tag:blogger.com,1999:blog-46314859749508722632024-03-14T13:29:43.695-05:00Sweet Kinsley GirlThe joys (and struggles) of raising a daughter with special needs.Carolinehttp://www.blogger.com/profile/06814472759057652109noreply@blogger.comBlogger30125tag:blogger.com,1999:blog-4631485974950872263.post-29348514483600728432017-05-25T11:54:00.000-05:002017-05-25T11:54:22.032-05:00Seizures, Seizures Go Away, (Don't) Come Again Another DayHello Readers. I am beyond sorry that it has been over a year since my last post. As you probably know, we've had our hands full with our beautiful baby boy, Seth. But Kinsley has also had a difficult year related to her seizures. These things combined with the day in day out grind of taking care of two children who need your help to do every single thing ever, means that I just haven't had time to blog.<br />
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But, we need your prayers, and I'm finally ready to talk about what's been going on with Kinsley.<br />
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In reality, Kinsley's seizures have never been gone. Since her diagnosis of epilepsy began at 13 months old, she's had seizures ever since. However, for about three years, we were able to keep them mostly controlled with medications. This control looked like one to three clusters of seizures per week on average. Most people never saw them because they usually occurred just after she would wake up in the morning or after a nap. Then throughout the rest of the time, she would be just fine. Occasionally, things would get slightly worse and we'd adjust medications or sometimes add a new one in order to go back to our semi-control. Until last year, she was on three seizure medications, each of which was very helpful each time we started it or adjusted it. Each of these medications has side effects, but she was able to adjust to them and go about her "normal" life.<br />
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Then, just over a year ago, our neurologist suggested we change one of her medications to a very similar one. The purpose of this was because the one she was using often wears off in effectiveness while the new one doesn't. Additionally, it has less severe side effects. He'd also seen most patients react better to it than the one she was on. He did warn us that it may not work for her, and the decision was up to us. The pros seemed good to us, so we decided to go ahead with the switch. This meant a slow addition of the new med and then a slow wean of the old.<br />
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At first things seemed to go well, when we added in the new one, but as we weaned off the old one, things got worse with more seizures than normal. Eventually it was decided that she should stay on the old one in addition to the new one. This brought her to a total of four seizure meds. For a while this worked ok. She still had semi control, if not the best it had been, she was still able to go about life as usual.<br />
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About six months later, her seizures increased again. At this point she began to have a cluster or more a day (for those wondering, she has <a href="https://en.wikipedia.org/wiki/Atonic_seizure" target="_blank">atonic seizures</a> aka drop seizures or drop attacks). Then one day she had 8 different occurrences throughout the day including one that happened during therapy. She was riding a scooter board on her belly and unfortunately a seizure occurred. Her head dropped, she hit her face on the ground, and bit through her lip. She had to be taken to the ER and have it glued together. Thankfully she was fine after that. However, we were worried about the major increase and I called her neurologist to see what we should do to start to get some control over her seizures back. At that point, trying the <a href="https://en.wikipedia.org/wiki/Ketogenic_diet" target="_blank">ketogenic diet</a> was suggested.<br />
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Therefore in November, just before Thanksgiving, we spent several days at Arkansas Children's Hospital in Little Rock to get her started on the diet. Initially, we did see some improvement with the diet. After a few weeks on the diet, her seizure activity decreased from 5-8 events a day down to 1-3. That was better for sure. However, over time that seemed to go away. By April she was back up to 5-8 events a day. Also, she suffered some side effects of the diet including stomach pain, and severe constipation which in turn caused lethargy, brain fog, and all around a decline in her quality of life.<br />
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This increase in seizures again, caused us to go back to trying new medications. She tried one which was no help.<br />
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Last month we saw her neurologist again. At that point we decided to quit the new med and try another. This newer one helped a bit again, but not a ton. For a week or so she had fewer seizures. As of today (a few weeks in with the newest med) she is having 4-5 events a day (FYI when I say event, I'm meaning either one drop or a cluster of drops that occurs within a small time span).<br />
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So, our newest path to hopefully controlling Kinsley's seizures is a surgery to implant a device called a <a href="http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/vagus-nerve-stimulation-vns" target="_blank">vagus nerve stimulator</a> (VNS). This device helps control seizures in approximately 80% of people who receive one. We have no guarantee that it will help Kinsley, but we have very high hopes. We know it greatly improved seizure control for one of Kinsley's fellow MEB friends. That gives us hope that it can work for her too.<br />
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The surgery is minor with two small incisions. Side effects are mild and rare. The main one being possible infection. Please pray this does not occur. If infection happens, the device has to be removed and usually cannot be re-implanted. The only other side effect is a tickle in the throat due to the stimulations. This can cause some throat clearing or coughing at first, but she should adjust to it fairly quickly without discomfort. The stimulator could show us improvement immediately or slowly over time. They say it can take up to two years for full improvement to occur. Of course we are prayerful that she will improve quickly, but also thankful that even if she doesn't, it could still come eventually. Another positive that we are hoping is that possibility of weaning off of some of her medications if this works. For many patients, this is able to happen. We'd love that.<br />
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Kinsley's current state is one of sleeping or lethargy most of the day. When she is awake, she is not interested in most things that she used to enjoy. It's difficult to have our girl feeling so badly. And worse to not be able to help her feel happier with the songs, books, swinging, etc that always used to work.<br />
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PLEASE, PLEASE pray that this VNS is the answer to our prayers that will turn things around for Kinsley. I'm somewhat at the end of my rope, worrying over her. I try to pray when I feel the worries crowd in and that helps, but I really need there to be some improvement. The stress is getting to me. In all that Kinsley has had to deal with up to now, her smile and happy disposition were what made it all ok. Now that we don't have that, we feel the pain and despair we felt when she was first diagnosed all over again. My prayer is that this is just a season that we will overcome just as we did her initial diagnosis. Please let this be your prayer as well. I keep reminding myself that God IS in control. I'm stuck on my human timeline of the here and now and I can't see the end that God does. I know somehow, in some way He will be glorified through all this and that He has Kinsley's best in his control. Pray for me as I wait on the Lord.<br />
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<span class="text Isa-40-28" id="en-ESV-18449" style="-webkit-font-smoothing: antialiased; background-color: white; box-sizing: border-box; font-family: 'Helvetica Neue', Verdana, Helvetica, Arial, sans-serif; font-size: 16px; line-height: 24px; position: relative;"><span class="versenum" style="box-sizing: border-box; display: block; font-family: Arial; font-size: 12px; font-weight: bold; left: -4.4em; line-height: 22px; position: absolute; text-align: center; top: 0px; vertical-align: top;">28 </span></span><br />
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Have you not known? Have you not heard?</div>
<span class="text Isa-40-28" style="-webkit-font-smoothing: antialiased; background-color: white; box-sizing: border-box; font-family: 'Helvetica Neue', Verdana, Helvetica, Arial, sans-serif; font-size: 16px; line-height: 24px; position: relative;"><div style="text-align: center;">
The <span class="small-caps" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; font-variant: small-caps;">Lord</span> is <span class="crossreference" data-cr="#cen-ESV-18449AL" data-link="(<a href="#cen-ESV-18449AL" title="See cross-reference AL">AL</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span>the everlasting God,</div>
</span><span class="indent-1" style="-webkit-font-smoothing: antialiased; background-color: white; box-sizing: border-box; font-family: 'Helvetica Neue', Verdana, Helvetica, Arial, sans-serif; font-size: 16px; line-height: 24px;"><div style="text-align: center;">
<span class="indent-1-breaks" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; font-family: monospace; font-size: 0.42em; line-height: 0;"> </span><span class="text Isa-40-28" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;">the Creator of the ends of the earth.</span></div>
</span><span class="text Isa-40-28" style="-webkit-font-smoothing: antialiased; background-color: white; box-sizing: border-box; font-family: 'Helvetica Neue', Verdana, Helvetica, Arial, sans-serif; font-size: 16px; line-height: 24px; position: relative;"><div style="text-align: center;">
He does not faint or grow weary;</div>
</span><span class="indent-1" style="-webkit-font-smoothing: antialiased; background-color: white; box-sizing: border-box; font-family: 'Helvetica Neue', Verdana, Helvetica, Arial, sans-serif; font-size: 16px; line-height: 24px;"><div style="text-align: center;">
<span class="indent-1-breaks" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; font-family: monospace; font-size: 0.42em; line-height: 0;"> </span><span class="text Isa-40-28" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;"><span class="crossreference" data-cr="#cen-ESV-18449AM" data-link="(<a href="#cen-ESV-18449AM" title="See cross-reference AM">AM</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span>his understanding is unsearchable.</span></div>
</span><span class="text Isa-40-29" id="en-ESV-18450" style="-webkit-font-smoothing: antialiased; background-color: white; box-sizing: border-box; font-family: 'Helvetica Neue', Verdana, Helvetica, Arial, sans-serif; font-size: 16px; line-height: 24px; position: relative;"><span class="versenum" style="box-sizing: border-box; display: block; font-family: Arial; font-size: 12px; font-weight: bold; left: -4.4em; line-height: 22px; position: absolute; text-align: center; top: 0px; vertical-align: top;">29 </span><div style="text-align: center;">
He gives power to the faint,</div>
</span><span class="indent-1" style="-webkit-font-smoothing: antialiased; background-color: white; box-sizing: border-box; font-family: 'Helvetica Neue', Verdana, Helvetica, Arial, sans-serif; font-size: 16px; line-height: 24px;"><div style="text-align: center;">
<span class="indent-1-breaks" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; font-family: monospace; font-size: 0.42em; line-height: 0;"> </span><span class="text Isa-40-29" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;">and to him who has no might he increases strength.</span></div>
</span><span class="text Isa-40-30" id="en-ESV-18451" style="-webkit-font-smoothing: antialiased; background-color: white; box-sizing: border-box; font-family: 'Helvetica Neue', Verdana, Helvetica, Arial, sans-serif; font-size: 16px; line-height: 24px; position: relative;"><span class="versenum" style="box-sizing: border-box; display: block; font-family: Arial; font-size: 12px; font-weight: bold; left: -4.4em; line-height: 22px; position: absolute; text-align: center; top: 0px; vertical-align: top;">30 </span><div style="text-align: center;">
Even youths shall faint and be weary,</div>
</span><span class="indent-1" style="-webkit-font-smoothing: antialiased; background-color: white; box-sizing: border-box; font-family: 'Helvetica Neue', Verdana, Helvetica, Arial, sans-serif; font-size: 16px; line-height: 24px;"><div style="text-align: center;">
<span class="indent-1-breaks" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; font-family: monospace; font-size: 0.42em; line-height: 0;"> </span><span class="text Isa-40-30" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;">and young men shall fall exhausted;</span></div>
</span><span class="text Isa-40-31" id="en-ESV-18452" style="-webkit-font-smoothing: antialiased; background-color: white; box-sizing: border-box; font-family: 'Helvetica Neue', Verdana, Helvetica, Arial, sans-serif; font-size: 16px; line-height: 24px; position: relative;"><span class="versenum" style="box-sizing: border-box; display: block; font-family: Arial; font-size: 12px; font-weight: bold; left: -4.4em; line-height: 22px; position: absolute; text-align: center; top: 0px; vertical-align: top;">31 </span><div style="text-align: center;">
<b>but </b><span class="crossreference" data-cr="#cen-ESV-18452AN" data-link="(<a href="#cen-ESV-18452AN" title="See cross-reference AN">AN</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span><b>they who wait for the <span class="small-caps" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; font-variant: small-caps;">Lord</span> shall renew their strength</b>;</div>
</span><span class="indent-1" style="-webkit-font-smoothing: antialiased; background-color: white; box-sizing: border-box; font-family: 'Helvetica Neue', Verdana, Helvetica, Arial, sans-serif; font-size: 16px; line-height: 24px;"><div style="text-align: center;">
<span class="indent-1-breaks" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; font-family: monospace; font-size: 0.42em; line-height: 0;"> </span><span class="text Isa-40-31" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;">they shall mount up with wings <span class="crossreference" data-cr="#cen-ESV-18452AO" data-link="(<a href="#cen-ESV-18452AO" title="See cross-reference AO">AO</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span>like eagles;</span></div>
</span><span class="text Isa-40-31" style="-webkit-font-smoothing: antialiased; background-color: white; box-sizing: border-box; font-family: 'Helvetica Neue', Verdana, Helvetica, Arial, sans-serif; font-size: 16px; line-height: 24px; position: relative;"><div style="text-align: center;">
they shall run and not be weary;</div>
</span><div style="text-align: center;">
<span class="indent-1-breaks" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; font-family: monospace; font-size: 0.42em; line-height: 0;"> </span><span class="text Isa-40-31" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; font-family: 'Helvetica Neue', Verdana, Helvetica, Arial, sans-serif; font-size: 16px; line-height: 24px; position: relative;">they shall walk and not faint.</span></div>
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<span class="text Isa-40-31" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; font-family: 'Helvetica Neue', Verdana, Helvetica, Arial, sans-serif; font-size: 16px; line-height: 24px; position: relative;"><br /></span></div>
<div style="text-align: center;">
<span class="text Isa-40-31" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; font-family: 'Helvetica Neue', Verdana, Helvetica, Arial, sans-serif; font-size: 16px; line-height: 24px; position: relative;">- Isaiah 40:28-31</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho2fcZ5Jsoe32SNyhWtk3e05ssbyOsW0uh_apc4XJi3IeBcT1CMigTopC4pwj2l2nE6mI5X9pqDlNmAWmQngDrZgDAA6jYExY8DJhBBUeUrplxWHA3RApEEyQqjssLhGUvM_MMz61xBDwn/s1600/FBKinsleySmileOpen.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1068" data-original-width="1600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEho2fcZ5Jsoe32SNyhWtk3e05ssbyOsW0uh_apc4XJi3IeBcT1CMigTopC4pwj2l2nE6mI5X9pqDlNmAWmQngDrZgDAA6jYExY8DJhBBUeUrplxWHA3RApEEyQqjssLhGUvM_MMz61xBDwn/s320/FBKinsleySmileOpen.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">A rare smile from Kinsley during this time, but even here you can see bruising on her forehead from her seizures.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhMwQ6GasbTCYc-05Tm5SagNuciJRnR0ZpsV508WLPcF0bbV4hFIqNZuAwuKvMaQeuqYgaA6uPKxNbPbr65kGohQmBj7cfnsf6-5xL1cQPXTUQpV9acKztInqcFGC_zRzXC4upuIM-PFa3/s1600/FBBothNonchalant.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1068" data-original-width="1600" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhhMwQ6GasbTCYc-05Tm5SagNuciJRnR0ZpsV508WLPcF0bbV4hFIqNZuAwuKvMaQeuqYgaA6uPKxNbPbr65kGohQmBj7cfnsf6-5xL1cQPXTUQpV9acKztInqcFGC_zRzXC4upuIM-PFa3/s320/FBBothNonchalant.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My sweet babies</td></tr>
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<br />Carolinehttp://www.blogger.com/profile/06814472759057652109noreply@blogger.com15tag:blogger.com,1999:blog-4631485974950872263.post-10044300509380627022016-04-13T21:55:00.001-05:002016-04-13T21:59:25.708-05:00Some Prayer RequestsSome big, new things are coming up for Kinsley in the next few days and I wanted to share them with you all, requesting that you keep each item in your prayers.<br />
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First, Kinsley will have her first ever dental appointment. While this isn't normally something big, for Kinsley it is. I've avoided it for a long time now, but at 4 years old, I think it's time she's finally gone.<br />
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There are several reasons why it's a worry and why I'd like your prayers. First, Kinsley has had some oral aversions in the past. She didn't like anyone to try to get in her mouth other than herself. However, her speech therapist has helped with this and she now tolerates someone else's hands in her mouth much better than she did in the past. However, I'm still not sure she'll allow it long enough for an actual dental exam. So, pray that she will.<br />
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I'm also worried about her teeth for two reasons. First, she has acid re-flux. This can harm the enamel on teeth, so I'm worried about what we'll find there. Second, if you've spent any extended amount of time with her then you know that Kinsley likes to grind her teeth for fun. She thinks it sounds or feels wonderful (it doesn't sound wonderful btw). So, after years of doing this for fun, I don't know really how much it's hurt her teeth or really what if anything the dentist will want to do to help the issue. We shall see.<br />
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The second big event Kinsley has coming up is an evaluation for a communication device! On Friday of this week, during her speech therapy session, she will be observed and evaluated on her use of PECS (Picture Exchange Card System). That combined with her fine motor and visual abilities will be evaluated to give us some ideas and options for an electronic communication device. There are hundreds of different devices and/or apps available for this type of thing, so someone knowledgeable on many of those devices will be doing the evaluation and then giving her opinion on which types she think could work for Kinsley.<br />
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This is a very exciting step forward for Kinsley's communication. PECS are great, but are limited by the number of pictures you have laminated and ready to go. With something electronic, you can store thousands of pictures and add new ones in seconds which will be much better.<br />
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So, please pray for this process to go well, for Kinsley to show her abilities well on Friday, and for wise decisions all around.<br />
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The last event I would like prayers for is for Botox injections. Kinsley had this procedure done once about three years ago. She will again be receiving Botox injections in her eyes. The Botox will help straighten her inward crossing. Just like the last time, the Botox is temporary. The hope is that while she is temporarily having corrected vision, her brain will see how this works better and then when the Botox wears off, her brain will not cause the crossing anymore and will keep her eyes straightened.<br />
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We are aware that this procedure is not guaranteed to work, but then neither is eye muscle surgery which is the other option she has for correcting her crossing. The injections are much less invasive than surgery which is why we're willing to try it. She will be sedated for the injections, so pray the sedation works and is easy on her.<br />
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This will be the last time we try Botox though. I'd really love for this to help improve her vision (the crossing effects her depth perception), so please pray this is successful!<br />
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I'd love to share more about our sweet girl, but don't have time at the moment. But she is continuing to grow, learn and improve every day. We're so proud of this sweet girl!<br />
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P.S. Snowflake Baby Boy is doing great too!<br />
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<br />Carolinehttp://www.blogger.com/profile/06814472759057652109noreply@blogger.com7tag:blogger.com,1999:blog-4631485974950872263.post-75447961121317390122016-02-07T14:22:00.004-06:002016-02-07T14:22:50.357-06:00Snowflake on the Way!Praise the Lord! The thing for which we have been fervently praying for nearly two years now has finally been answered with a YES! We couldn't be more excited to announce that I am expecting a baby and he/she will arrive on or around August 19. Again, praise God from whom all blessings flow!<br />
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As many of you know from my last adoption update, very sadly, our first transfer was unsuccessful. After that we decided to keep things closer to the chest and didn't tell anyone when our second transfer would take place (except the family who helped us take care of Kinsley during the transfer and the few days after as I rested - and we're very thankful for them!). As much as I love to have everyone up to date and praying for us, for the sake of our emotions, it seemed easier to let things happen privately this time.<br />
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So, on December 1st we, once again, transferred two embryos. (Side note: After first feeling twins would be too difficult, we both prayed about it, discussed it with our doctor and each other and decided our chances of pregnancy were greater if we transferred two. We both felt strongly in deciding that that we wanted both babies to live. Obviously we're doing this because we are pro-life and know these are already human lives, just in their earliest form.)<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdWI4eF25cnMPxMrebPXCvUTCuMlTjAeQaGTdLo-im-AP30jXD3CA131q6mf0wW8eDZQL9kdUR3U4C4ut0oU_zwEbL4OXCs6avNvDtItcxZG_OiQDSTmO7ujyVqOhpsASnqt_zoxQ1t7j3/s1600/eIVF_ImgX.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdWI4eF25cnMPxMrebPXCvUTCuMlTjAeQaGTdLo-im-AP30jXD3CA131q6mf0wW8eDZQL9kdUR3U4C4ut0oU_zwEbL4OXCs6avNvDtItcxZG_OiQDSTmO7ujyVqOhpsASnqt_zoxQ1t7j3/s400/eIVF_ImgX.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our two snowflakes on the day of the transfer.</td></tr>
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After the transfer, I followed all the protocols: rest for 24-48 hours, no heavy lifting, no hot baths or showers, maintain all medications which I'd begun in the weeks leading up to the transfer. Those include daily progesterone injections, estrogen patches, prenatal vitamins and a few other things thrown in there. On the tenth day following the transfer, I had my first HCG blood test to test for the pregnancy hormone in my body. (for those who don't know, HCG is a hormone your body releases when pregnant. A level of 5 or above indicates pregnancy)We got the call mid-morning that I was pregnant! My level was a very healthy 365 (compare that to the first transfer where it was a very low 24 and then three days later at a 4 showing the pregnancy had not lasted). At that point I was 4 weeks pregnant. From there I was instructed to continue my medications and wait for the next blood test.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYa8Fje4xUk9Ed7MFsdp3Mle41obdzZAAMLoUPFhK1K4Zw__iidDMRv2s2LkFxo-hP0GEOJHSKRV0Yga5U95KOChoJnMzffienrvBjkAOA-qWu193fzTdmaidv0OZGpjb-FDkLhb3QMBhf/s1600/IMG_7850.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYa8Fje4xUk9Ed7MFsdp3Mle41obdzZAAMLoUPFhK1K4Zw__iidDMRv2s2LkFxo-hP0GEOJHSKRV0Yga5U95KOChoJnMzffienrvBjkAOA-qWu193fzTdmaidv0OZGpjb-FDkLhb3QMBhf/s400/IMG_7850.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I took this picture on the day we found out. <br />Kinsley is officially a Big Sister!</td></tr>
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The second test was one week later. (I kept myself busy that week buying a new van as I discovered the week before that my trusting car from high school graduation had given up the ghost. But I LOVE my new van!) My second blood test showed that the pregnancy was progressing as needed and my levels were up to 6,665! Very healthy! At that point we scheduled our first ultrasound with my fertility doctor. Then we enjoyed a fun Christmas with family.<br />
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On December 27 we got to see our baby for the first time! It was a day of mixed emotions. Of course we were elated to see our baby and his/her heart beating and even get to hear the heartbeat (I didn't know it was possible at six and a half weeks pregnant, but it is!) However, we were very saddened to learn only one baby had survived. We wanted both so badly. We may not understand it, but we accept that God is in control. And we couldn't stop feeling excited about our growing baby.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg52GdSDva6DbHNLYfbpdeIdYICcxjX-gxGTE6p6SE89nH4ljuZ2oK-ctHyo2lFZEwjuEgvgCdsGLLxjqbSaVlJxX0b-5_asts8y_k-NUDcWs53JnUY_wFvyO8h7xlP1uJwWmZkE46mYHHo/s1600/10-04-51+copy.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="306" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg52GdSDva6DbHNLYfbpdeIdYICcxjX-gxGTE6p6SE89nH4ljuZ2oK-ctHyo2lFZEwjuEgvgCdsGLLxjqbSaVlJxX0b-5_asts8y_k-NUDcWs53JnUY_wFvyO8h7xlP1uJwWmZkE46mYHHo/s400/10-04-51+copy.png" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First photo of Baby! Hard to see, but the top blue hatch is the top <br />of the head and the bottom hatch is the bottom of the rump.</td></tr>
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Two weeks later we had our second ultrasound at the fertility clinic. By then Baby had grown and we even got to see a little foot kicking. It was exciting! From there my fertility doctor told us how pleased she was with everything and I was released from her care to my OB's. In the ultrasound we were also able to see the placenta had set up nicely. This meant my daily injections and medicines were no longer necessary. At that point my body was perfectly capable of providing everything Baby needed. In any IVF or frozen transfer situation, when your body's ready, you continue meds for more week just to be safe. So I finished those off after one more week and I can tell you that was a happy day for both Luke and myself. I was tired of the shots and Luke was tired of giving them to me!<br />
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<tr><td class="tr-caption" style="text-align: center;">Baby has grown! The head is facing down on the right and a little <br />foot is on the left. And you can see the placenta below Baby.</td></tr>
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Since then I had my first OB appointment at 10 weeks with the OB nurse. She took medical history, answered questions, etc. They also did blood work including checking my thyroid which has to be monitored throughout pregnancy because of my Hashimoto's.<br />
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Then this past Thursday, at 11 weeks 6 days, we went to see my OB. She's the same doctor who delivered Kinsley and I am very happy to have her again. We got there just expecting a normal OB appointment with a doppler check of the heartbeat, but we were happily surprised to get another ultrasound! Since this was my first OB visit with the doctor we had an ultrasound to confirm the pregnancy and heartbeat (even though they already knew all that from our fertility clinic, but I wasn't going to complain). So we got to see Baby again and he/she has grown so much! We could see him/her moving around. The heartbeat sounded great and everything is progressing just as it should! We are so thankful to God for that. My blood work also came back normal with my thyroid levels being just where they should be. Yay!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXVpQCrZjXI8o1cpfe4TLwP4uDmzow6k37peWPDHVZin5z99zCvhy9AxrSGJmU3QmdHBC38HiTI4pIG-GJiwU1Of32cl7aaZzdDl69Z1Qe6ZqbCqX1NV73I4oi_xiO1VEkyFhuHeUGxzhh/s1600/IMG_8209.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhXVpQCrZjXI8o1cpfe4TLwP4uDmzow6k37peWPDHVZin5z99zCvhy9AxrSGJmU3QmdHBC38HiTI4pIG-GJiwU1Of32cl7aaZzdDl69Z1Qe6ZqbCqX1NV73I4oi_xiO1VEkyFhuHeUGxzhh/s400/IMG_8209.JPG" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">So this is a picture of pictures. Sorry for the bad <br />quality, but you can see how big Baby is now!</td></tr>
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But we are also so, so, so thankful to all of you who have supported us throughout this entire process. Thank you so much for all who have prayed for us and this baby, for those who donated money and/or participated in our fundraisers! We seriously would not have this baby without you all. So you are a very real part of this! Thank you, thank you, thank you!!! Now, please, continue those prayers for a healthy pregnancy all the way through out! <br />
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<br />Carolinehttp://www.blogger.com/profile/06814472759057652109noreply@blogger.com11tag:blogger.com,1999:blog-4631485974950872263.post-20841948198592249482016-01-09T16:33:00.003-06:002016-01-10T16:27:30.718-06:00Kinsley is 4!<div class="separator" style="clear: both; text-align: center;">
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Well, it has been far too long since I updated everyone on our sweet Kinsley girl. But, it's time to share how far our sweet girl has come in the past year. Kinsley had an amazing third year of life and we can only pray her fourth will be just as amazing.<br />
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It was a few weeks ago now that Kinsley turned 4. She was a bit spoiled with three different parties (all small family affairs) and too many presents to count from all her loving family. We're continually grateful for the amazing amount of love and support Kinsley receives from our families. She is one loved little girl. Here are some pictures of her celebrations:<br />
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<tr><td class="tr-caption" style="text-align: center;">Relaxing with Uncle Jared <br />
(they have December birthdays and celebrate together!)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Cake is good!</td></tr>
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For my own sake of record keeping and to update all you wonderful people who constantly pray for our sweet girl, I wanted to list all the amazing things Kinsley has learned in the past year. So here's the list as I can remember it!<br />
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<li>She can walk! Independently! If you've read the last few posts on her, then you already know this, but since her first evening walking around the house on her own back in June, she has made soo much progress. Kinsley is much more stable now than she was then. She still falls occasionally, but her balance is improved so much that I don't feel she needs her helmet most of the time. Even when she does fall, she is very good at catching herself and getting back up and going.<br />Kinsley walks all around our house, she walks around her classroom at school, all around the church building, etc. Anywhere we go, she walks. I can't tell you how much easier it is on us now that she is able to do this. Not to mention just amazing to watch. Praise God for this amazing blessing!<br />She is currently working on walking around obstacles (which she's getting pretty good at), stopping and going on command (a game she loves to play with Ms. Christina), and walking up and down a ramp (a skill which requires assistance, but that she is slowly improving.</li>
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<li>She can push to stand from the floor! For a long time she's been able to do this with assistance, but in the last few months it has become more of an independent skill. I wouldn't say it's completely mastered, but about 75% of the time she is able to do it on her own (not to mention that when asked to, she understands the direction). This also helps with her walking more. When she first started walking everywhere, if she fell, she would just continue by crawling where she was going. Then she transitioned to falling, crawling to somewhere that she could pull up on and then walk again. Now she's finally realized that she can push herself back up from the floor. She doesn't do it every time, but definitely is starting to without being reminded that she can. Yay!<br /> </li>
<li>She can walk up and down 3-4 steps without assistance (sometimes). This is a big skill still being worked on at physical therapy. Every time she has PT, she does this skill 5 or 6 times. She often still needs a bit of assistance, but has on many occasions walked up the four steps only with the help of the railing. Going down is harder, but she does at least one on her own each time and has done two on her own many times. Such a big, strong girl!</li>
<li>Kinsley is able to enter and exit the bath tub on her own! She started this skill on her own when she started walking. She started wandering all around the house and I'd find her in the bath tub. She used to just put her hands down in it and pull her body in the rest of the way. Then she would just lay happily in the tub until I took her out (she loves baths). So, I talked to her PT about it and Ms. Christina has taught her the correct way to get in and out. She now is able to hold on, put one leg in at a time and then sit down. She can do the same to get out. She usually requires little to no assistance. Once again, this skill helps my back out and makes her more independent. So thankful for these skills!</li>
<li>Kinsley can pull her body on a scooter board down a long hallway and make a turn! This is a skill worked on in OT and a huge testament to the upper body strength she's been gaining. And it's fun to watch her be such a big girl! </li>
<li>She can scoop with her spoon! For a long time she's pick up a spoon and eat off of it, but wouldn't try to scoop the food out. Ms. Kelly has worked on this with her in OT for several months now and she's made much progress! It's still a skill we're working on, but every day she does this on her own at least two or three times.</li>
<li>She can pinch something in her pincer grasp (sometimes)! This is a loooooong time skill we've been working on forever. Usually she finds it easier to use a raking motion and pick foods up that way, but she is FINALLY showing an ability to get her two pincers out and pinch a puff between them. Yay! Now we just need more practice to make it perfect.</li>
<li>Kinsley can scribble! It's not her favorite thing to do, but she can do it!</li>
<li>She can remove her shirt with minimal assistance with the sleeves! And she can partially push and pull her pants up and down. Big girl!<br /> </li>
<li>Kinsley can choose between three photos to request the item she wants! PECS has been going great with Ms. Connie and with her teachers at school. She can also do it at home, but admittedly, I'm still trying to figure out how to make it a constant. I'm hoping we can get an evaluation for an electronic device soon. With this evaluation, she'll be given an opportunity to try out an electronic communication device that would work well with her abilities. </li>
<li>She can understand and follow simple one step instructions. Kinsley's receptive language has made leaps and bounds of progress this year. I can't begin to list all the words and phrases she understands, because the list is so long. I'm so thankful for this as this was something I worried would never come in my bad moments. I'm so thankful to God for his amazing provision!</li>
<li>She has a favorite TV show! I realize this isn't a skill, but it still is a development I wondered if she would ever gain. Now, it's just one episode that she likes, but each time she watches it, she is so happy and pays such close attention. It's adorable to watch. (In case you were wondering, it's Baby Genius Favorite Sing Alongs.)</li>
<li>She loves music! We've always known she loved to be sung to, but in the past year she's shown us an even greater love of music. I've played nursery rhymes and toddler songs for her in my car for years now. I couldn't tell if she cared or not, but I still did it. Sometime last year she started crying and whining every time she rode in Luke's car. It was frustrating and we couldn't figure out why. Then one day in my car she started to do the same thing. I turned on her music hoping it would distract her. It did immediately. No more complaining. I immediately transferred some of the music to Luke's car and told him to try it. He was skeptical at first, but the second we turned the music on in his car, her crying stopped again. We finally understood what she had been requesting for so long! Now, anywhere we go, her music is required if a peaceful car ride is desired. :)</li>
<li>Kinsley loves to be read to! She's always enjoyed books with texture or buttons to push and she still does. But she's also developed an enjoyment of books that are repetitive or silly. She just smiles and laughs at books like <i>Dinosaur Vs. Santa</i> by Bob Shea, <i>Time to Sleep Sheep the Sheep</i> by Mo Willems or <i>But No Elephants</i> (a favorite from my childhood)! It's so fun to enjoy these typical things with her and I'm so thankful for the cognition she's gained in order to enjoy these things.</li>
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This is the list I can think of. And these are the big things. There are many other tiny little things that have led to each of these major things that she has learned as well. It's amazing to be able to see her growth. Each thing she learns is something that was in doubt before. Maybe she would learn them, maybe not. What a blessing it is that she has!<br />
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As this new year progresses, I pray she will gain just as much this year as last. Please be in prayer for two major goals in my mind. First, I want improved communication. I would love for her to talk! That would be a miracle from God at this point, but I KNOW He can help her do it. And I am praying for it. Will you join this prayer, please? However, I am aware, that sometimes, a no is the answer we receive to our prayers. If that is the case, I know He will provide in another way. Maybe the communication device evaluation will be the answer to our prayers. Only time will tell.<br />
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Second, a goal that wasn't on my radar, but Kinsley has shown us may be time for, is potty training. This will be a long process that may never be fully completely controlled, but only God knows the answer to that. And our girl peed in a potty on just her third try at it! I was so proud of her! So, please pray for this as well!<br />
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I want to thank each of you again, who read this, pray for our girl and our family. Without you and your prayers, many of these gains would not be possible. So, THANK YOU! You are loved and appreciated.<br />
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Carolinehttp://www.blogger.com/profile/06814472759057652109noreply@blogger.com4tag:blogger.com,1999:blog-4631485974950872263.post-32437876140719908212015-10-13T17:08:00.000-05:002015-10-13T17:14:46.547-05:00Snowflakes in HeavenI don't know any other way to say this, so I'll just say it. We did our first transfer on September 22. We transfered two of our embryo babies. (Yes, I did previously say we were only going to transfer one, but that is a story for another post.) Ten days later I had a blood test done to test for HCG (pregnancy hormone). It was positive, but very low at 24. We knew then it was possible our pregnancy would last, but that it was unlikely to.<br />
<br />
Three days later I was tested again and that test showed my HCG level was down to 2 (anything below 5 is considered a negative pregnancy test).<br />
<br />
So, I'm no longer pregnant. I'm heartbroken. I don't understand and I never will.<br />
<br />
I do know that God is faithful. Even in this. It's hard to see how at this point, but I know it's true.<br />
<br />
The song "Blessed Be Your Name" resonated with me in the miscarriage we experienced in early 2011 and it does again with me now. It's an excellent reminder that we praise and glorify our Lord in all things. We can't only love and worship Him when he gives us what we ask for. When things are difficult, He's still there and He still deserves our love. It can be hard for me to remember that in times like this and so I'm thankful for songs like this to help me when I want to forget that.<br />
<br />
Please pray for us as we wait for the opportunity to move forward with another transfer and for our broken hearts too. <br />
<br />
<div style="background-color: white; border: medium none; color: black; overflow: hidden; text-align: left; text-decoration: none;">
<blockquote class="tr_bq">
<b><i>Blessed be Your name<br />
In the land that is plentiful<br />
Where Your streams of abundance flow<br />
Blessed be Your name</i> </b></blockquote>
<blockquote class="tr_bq">
<b><i>And blessed be Your name<br />
When I'm found in the desert place<br />
Though I walk through the wilderness<br />
Blessed be Your name</i> </b></blockquote>
<blockquote class="tr_bq">
<div class="verse">
<b><i>Every blessing You pour out<br />
I'll turn back to praise<br />
When the darkness closes in, Lord<br />
Still I will say</i></b></div>
<div class="verse">
<b><i>Blessed be the name of the Lord<br />
Blessed be Your name<br />
Blessed be the name of the Lord<br />
Blessed be Your glorious name</i></b></div>
<b><i>Blessed be Your name</i> </b></blockquote>
<blockquote class="tr_bq">
<b><i>
When the sun's shining down on me<br />
When the world's all as it should be<br />
Blessed be Your name</i> </b></blockquote>
<blockquote class="tr_bq">
<b><i>Blessed be Your name<br />
On the road marked with suffering<br />
Though there's pain in the offering<br />
Blessed be Your name</i> </b></blockquote>
<blockquote class="tr_bq">
<b><i>Every blessing You pour out<br />
I'll turn back to praise<br />
And when the darkness closes in, Lord<br />
Still I will say</i> </b></blockquote>
<blockquote class="tr_bq">
<div class="verse">
<b><i>Blessed be the name of the Lord<br />
Blessed be Your name<br />
Blessed be the name of the Lord<br />
Blessed be Your glorious name</i></b></div>
<b><i>Oh, blessed be the name of the Lord<br />
Blessed be Your name<br />
Blessed be the name of the Lord<br />
Blessed be Your glorious name</i> </b></blockquote>
<blockquote class="tr_bq">
<b><i>You give and take away<br />
You give and take away<br />
My heart will choose to say, Lord<br />
Blessed be Your name, Lord</i> </b></blockquote>
<blockquote class="tr_bq">
<b><i>You give and take away<br />
You give and take away<br />
My heart will choose to say, Lord<br />
Blessed be Your name</i> </b></blockquote>
<blockquote class="tr_bq">
<b><i>You give and take away<br />
You give and take away<br />
My heart will choose to say, Lord</i> </b></blockquote>
<blockquote class="tr_bq">
<div class="verse">
<b><i>Blessed be Your name</i> </b></div>
</blockquote>
</div>
Carolinehttp://www.blogger.com/profile/06814472759057652109noreply@blogger.com5tag:blogger.com,1999:blog-4631485974950872263.post-11888667592742992082015-07-09T11:16:00.003-05:002015-07-09T11:18:08.436-05:00Embryo Adoption Moving ForwardWell, it's been awhile since we've been able to say this, but we are finally moving forward with our embryo adoption! No more waiting!<br />
<br />
My last thyroid function tests showed that my thyroid hormone levels are back within the normal range thanks to the medication I've been taking. Praise God for that. Unfortunately, my TPO antibodies (for those who don't know, these are a part of Hashimoto's and are a part of what has been hurting my thyroid) are still in the abnormal range. The antibodies are lower than ever before (down to a 168 for those who want to know) which is good, but a normal level is below 38.<br />
<br />
After talking with my doctor she said I am medically ready to move forward with our first cycle. However, I was also informed that because of my diagnosis, I will always have elevated TPO antibody levels for the rest of my life (this was not something we understood before). She said I would not ever get below 38. This means that I will always have an increased risk of miscarriage, but she also said if it was her, she would go forward with the cycle.<br />
<br />
The increased risk of miscarriage is a very scary truth for me. Some of you know, but many don't, that I experienced a miscarriage before we had Kinsley. It was the hardest experience I'd been through up to that point in my life and (of course) not something I ever want to experience again. That being said, we've always known of the risk of miscarriage in expanding our family through embryo adoption. Statistics say that half of all pregnancies end in miscarriage (many happen without the mother's knowledge very early in the pregnancy). Knowing that we still chose this option.<br />
<br />
Now knowing that we have an even greater risk of miscarriage is difficult to process. BUT, we believe God brought us to this point and will carry us through. I could live this next part of my life in fear of what will happen with worry and anxious feelings, but I'm choosing to leave this up to God. God's word talks about fear so much. And what He's always reminding us is to TRUST Him. Do not live in fear. He is always with us and will never forsake us. Does that mean I won't have a miscarriage or that our first transfer will even result in a pregnancy. No, not necessarily. Obviously, we are aware of the realities of our own free will in choosing this path. And the realities of a fallen world that includes sickness and death. However, we also know our God is greater than all of that and He can carry us through this process. These words of Jesus will be what I remind myself of over these next few months:<br />
<blockquote class="tr_bq">
<blockquote class="tr_bq">
<blockquote class="tr_bq">
"Peace
I leave with you; my peace I give you. I do not give to you as the
world gives. Do not let your hearts be troubled and do not be afraid.<span class="p">" - John 14:27</span></blockquote>
</blockquote>
</blockquote>
So, we will not live in fear. Instead, when fear creeps in, we will go
to Him in prayer asking for peace, and His will to be done. Will, you
please join us in praying for this process? We know that the fervent prayers
of a righteous person are powerful and effective. So, we desire all of
your prayers for this first transfer to be successful and result in a strong, healthy pregnancy and baby. Thank you so much!<br />
<br />
As for the specifics, we are not doing the July cycle as we previously had hoped. Really, this month is so incredibly busy for us and it was just going to be impossible to get everything done that needs to be done medically, financially and legally (we're doing our transfer in Tulsa and Oklahoma law requires a judge to approve this). So we are moving forward with the August/September cycle. This means I will begin my medications for the cycle next month and if everything progresses as it should, our first frozen embryo transfer will take place in early September. Again, we so desire your prayers over this whole process!<br />
<br />
I haven't decided how much more I will post on the blog through this part of the process. I feel the need to keep how things go private through this part, mostly for my own ability to process the emotions and unknowns without the whole world knowing everything. I guess what I'm saying is, please don't be offended, but I may not post about the transfer until it's over and we know whether or not a pregnancy occurred. I will definitely let you know one way or another, but it will just be awhile before I do. I hope you can understand that! I really do appreciate all who have kept up with our adoption and have helped us financially and/or through prayer.<br />
<br />
That's all for now, but I'll leave you with a picture of our little walker. She's been making more and more gains in her walking and we are so thankful! Her new record is 46 independent steps. Thank you, Lord!<br />
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<br />Carolinehttp://www.blogger.com/profile/06814472759057652109noreply@blogger.com1tag:blogger.com,1999:blog-4631485974950872263.post-65648233767847990112015-06-18T20:53:00.001-05:002015-06-18T20:59:51.434-05:00 SHE'S WALKING!!!Praise God from whom all blessings flow!<br />
<br />
I can't even describe the elation I am feeling right now. I'm somewhat shocked too. I knew this day was coming, but I just never knew when it would be.<br />
<br />
This past week or two Kinsley's walking while holding one hand has become so stable. She's been moving with very few balance checks and then yesterday during physical therapy she walked independently for 14 steps. That was a new record for her. I should have realized it was tidings of good things to come.<br />
<br />
Then, tonight, I watched her walk from our love seat to the couch with no problems. Then she started walking to the kitchen - further than she's gone. So I decided to get out my camera and get it on film!<br />
<br />
So, some notes about the videos:<br />
<br />
1) Recently we got a helmet for Kinsley to wear around the house so she can move around independently without someone right next to her 24/7. She's wearing it in the video and her hair is a wreck. Please excuse that!<br />
<br />
2) There is a better video of her walking, but it was too large a file size and blogger wouldn't let me upload it. I will post that one on Facebook. Please watch that one (and forgive the crazy camera work as we were home alone and I had to video while following her around). If you don't have Facebook, I'm very sorry!<br />
<br />
3) These are the best videos I have ever seen in my life! I am so proud of this little girl.<br />
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Thank you so much for all that have prayed for this for so long and especially for the prayers for greater balance that I asked for in the last post. You guys are so helpful and God is so gracious and amazing to bless us in this way. Thank you, thank you, thank you!!!Carolinehttp://www.blogger.com/profile/06814472759057652109noreply@blogger.com6tag:blogger.com,1999:blog-4631485974950872263.post-58820786575844774912015-05-21T12:02:00.002-05:002015-05-21T12:02:57.528-05:00Sweet Summertime with Sweet KinsleyAs promised, it's time for a post about our sweet Kinsley girl. Kinsley has one week left of preschool and then it's time for summer! Yay! I'll admit, I've come to enjoy having the hours in the afternoon to work on chores, run errands, blog, work on adoption stuff, watch a little Netflix and enjoy the occasional day date with Luke. It helps that I know she's having fun at school with teachers and students who've come to love her. My initial reaction to thinking about having her home those hours again was, um, what are we going to do during that time? But, I've been happily planning some summer activities which I'm eager to try out with our precious girl.<br />
<br />
You see, it can be difficult with Kinsley to find things to do. She has a limited number of activities that she enjoys and her attention span is not long and if I let myself, I start to feel sorry about all the things we can't enjoy together - movie dates, dress-up time, baking cookies together, craft projects, singing together, playing games, etc. These are the sorts of things I imagined I would enjoy with my child before we knew about her diagnosis. And unfortunately, those are just not things Kinsley can do or wants to do.<br />
<br />
However, when I feel down, it helps to make a list of the things she CAN do and enjoys doing and make sure we spend time doing some of them each day. Every smile or laugh that comes from her over these activities makes all the sadness disappear and my every second with her so worth it. So here are some things we plan to do every day this summer (and of course we already do these now, but we can do them MORE this summer.):<br />
<br />
<ul>
<li>Swinging - we have a toddler swing hanging out back and I think this is Kinsley's favorite place in the world. The second she sits down in that swing her smile appears and the first push always comes with a squeal of delight. I seriously think she could swing for hours and enjoy every second of it. It's the best thing ever. She loves it. And I love how much she loves it.</li>
<li>Singing - I mentioned this above and while we can't sing together, I can still sing to her, which she loves. When I sit her in my lap and start into her favorite songs, she just smiles and makes her happy sounds until each song is finished. If clapping is involved, she claps along too. This too she could enjoy forever. It only ends because my repertoire of songs runs out. (If you're wondering she enjoys songs like, "If You're Happy and You Know It", "The Wheels on the Bus", "Roley Poley Roley", "Where is Thumbkin?" "Our God is So Big", etc., etc. etc.)</li>
<li>Bouncing on her trampoline - she received a mini-trampoline as a birthday gift and the girl loves it. If I help her bounce her body, she'll smile and ask for more until I run out of strength to continue.</li>
<li>Dancing - I hold her in a dancing position and spin us around singing "Dancing, dancing, dancing, dancing," and she always wants more. Unfortunately for her I get motion sickness way to easily (yes, just spinning in a circle makes me sick) and this can only last a few rounds. But each happy smile is worth it.</li>
<li>Blast Offs - This is more of a daddy game because he's much stronger than me. I can only do it with her in a pool. But this girl is an adrenaline junky and loves to be thrown in the air.</li>
<li>Play ball - While Kinsley's ball skills are mostly poor, she does understand and is able to push a ball back and forth. She loves the cheers she gets with each pass and claps and smiles the whole time. It's much fun!</li>
<li>Read together - Kinsley's favorite books right now are the ones with the sound buttons. Each time she pushes one of the buttons and hears the sounds, a smile crosses her face or her happy hum comes out. Needless to say, we have many of these books and we read them each day. But also, she's recently begun enjoying hear us read <i>Cat the Cat</i> books by Mo Willems (isn't he the best, btw?!). They are repetitive books for toddlers and she finds them so funny! It's so fun to watch her face as she listens. We only have two <i>Cat the Cat</i> books right now, but more will be purchased!</li>
</ul>
There are more, similar things to add to this list, but this is the gist of our day to day fun. We also have other exciting things planned for this summer like a family wedding where Kinsley gets to be a flower girl! Luke's brother, Jared is marrying an amazing lady, Natalie and we couldn't be happier for them. This wedding will be our first big adventure for the summer. We'll also enjoy a week in Alabama with my family, some time in Colorado with Luke's extended family, play dates, park time, pool time, splash pad fun and more. I'm planning to buy a sprinkler and get that set up for Kinsley some this summer too. This girl loves water and I'm hoping some sprinkler time can help adjust her to feeling the grass (she doesn't enjoy touching grass and other similar textures). I think it'll be a fun way to work on her walking skills too. We'll see how it goes!<br />
<br />
Kinsley will also be doing a summer program through her preschool for five weeks, three hours each week. It'll be in her same classroom and she will work to maintain her level of comfort, language skills and adaptation to school that she's gained this past few months. This is to avoid losing anything over the summer and avoid a rough transition back into school come August. <br />
<br />
As for prayer requests in regards to Kinsley, I have some specific ones. First, please continue to pray for her to gain more balance. She's still not walking independently more than five or six steps consistently because her balance is so poor. She has the strength and desire to walk, she just has very little balance and control. So, please pray for that! She's become very good with her walker and is also constantly improving at walking with one hand held. I can take her into church, therapy or a store holding one hand with only a few balance checks and rarely a fall. I know that doesn't sound amazing, but a few months ago we could only walk a couple of feet that way. Now she can go hundreds.<br />
<br />
Secondly, pray for her language development. She still only uses three signs and babbles, but without any words for meaning. I'm ok with whatever she is able to develop, but I know God is all powerful and can help her to gain more than we imagine. So please pray about this for us. She is currently working on using PECS (Picture Exchange Card System) during speech therapy and she's become quite good at it. It took awhile to get there, but she now can differentiate between two pictures and choose which item she wants and hand the card over to her therapist or me to receive the item. It's very exciting to watch because it shows us the understanding she has and we're very thankful for it. Currently she only uses it during therapy, when I do "home therapy" with her and at school, especially during snack time where she uses the cards to request food and drink. My hope and plan for the summer is to begin to adapt our home and environment where the PECS can be used more functionally throughout the day in order to encourage more language development from Kinsley. This is a big endevour though and I'm a bit overwhelmed by what all needs to be done (items she likes need to be re-organized, picture cards laminated with velcro will need to be placed at her level throughout the house, etc.) and I'm nervous that she's going to hate it (since it means her toys will only be available when she requests them now instead of just out where she can get to them like they have been.) But I will be good for her and hopefully all of this is leading us towards an adaptive device for her to communicate with eventually. Anyway, many prayers are needed!<br />
<br />
My last prayer request is related to the gene therapies that some day may be available to help treat CMD. CureCMD, a research organization who are working on a cure for MEB and related diseases some day, recently announced a research grant that has been funded to them and they will be working on developing a gene therapy in mice with the affected FKRP gene. This is not the gene the Kinsley has affected (hers is POMGNT1), but it is a gene that causes a dystroglycanopathy (what hers causes too) and is very closely related. This is not a clinical trial or anything, but it's a great step towards that and what we've been praying for. Honestly, all the gene stuff and research about gene therapy can be somewhat confusing, but the big thing is they've started researching gene therapy in dystroglycanopathies. That's huge for Kinsley and kids like her. It may not mean anything would be available in her lifetime, but it COULD. So, keep those researchers in your prayers, please!<br />
<br />
Thank you so much for loving our sweet girl and caring enough to keep updated on her and most especially, thank you so much to all those who are praying for her. On a regular basis I have people (all different people) tell me they are praying for her and our family. This is huge for her and for us. We so appreciate the support and love, but most importantly know that God is in control and it's through his blessing and help that our sweet girl has come as far as she has. All praise goes to Him!<br />
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<br />Carolinehttp://www.blogger.com/profile/06814472759057652109noreply@blogger.com2tag:blogger.com,1999:blog-4631485974950872263.post-30958453696545809582015-05-19T16:33:00.000-05:002015-05-19T16:33:44.075-05:00A Short Update...Some people have been asking me how things are going thyroid-wise and moving forward with our embryo adoption, so I thought I'd give everyone a quick update.<br />
<br />
Up until yesterday, we've just been waiting. I started taking thyroid replacement meds about five and half weeks ago now. (For those who missed the last post and are confused, click <a href="http://sweetkinsleygirl.blogspot.com/2015/04/the-best-laid-plans.html" target="_blank">here</a> to find out about my Hashimoto's Disease diagnosis.) Like I said before, we were told it would take weeks to months to really take effect and help get my hormone levels back within normal range.<br />
<br />
I went ahead and got a blood test done exactly four weeks after starting the meds since I've been anxious to hear how the meds were helping. I should have had the results back within a day or two, but just like everything we've done so far, more waiting than planned was involved (God really is teaching me some patience these days!) My doctor was out of town for the week, so I was not able to receive the results until she was in the clinic and had read them. So ten days after the blood test, I finally heard back.<br /><br />My levels are still not within normal range, which is disappointing, but they are progressing towards the correct ranges. So, basically, I'm getting better, but I'm not there yet. The doctor decided to increase my dosage three days a week and she thinks this will get me on track and within normal ranges by July. July is important because that is when the next FET cycle is offered by our clinic. They only do eight cycles a year and they don't do any in June. So we already knew, even if my levels were back to normal by now, we still would have to wait until July for our first cycle anyway.<br />
<br />
So, at this point we are waiting. Again. Still. Waiting isn't fun, but you know, seriously, with all the waiting we've been doing, I really have learned to deal with it. I truly am feeling ok with things right now. I want God's timing to be what leads us through this process, not my blundering human rushing around, so I'm thankful He's in control and helping us down this path. (Now check with me next month after I check my levels again and make sure I'm still feeling this way. Give me a good reminder if I'm not! Gotta keep me accountable, people.)<br />
<br />
Please pray for us through it all and specifically that my medication is doing what it's supposed to. Thank you!<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNahWE4KAZWXZI02pwfY_2DUhqIQi-C55sI1PJ4bnImUETIr8x3IP1VjEbrCoAeWL8xD7QHlHbBEXTxG2KCkIP1YnXc62foAJ13og5IybfNvhqOnizadD1Wu6iFF1sNN6eaz-CEHqjB8mq/s1600/IMG_6337+1.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNahWE4KAZWXZI02pwfY_2DUhqIQi-C55sI1PJ4bnImUETIr8x3IP1VjEbrCoAeWL8xD7QHlHbBEXTxG2KCkIP1YnXc62foAJ13og5IybfNvhqOnizadD1Wu6iFF1sNN6eaz-CEHqjB8mq/s320/IMG_6337+1.JPG" width="240" /></a></div>
P.S. I realize this blog is called Sweet Kinsley Girl and it's supposed to be about her. I apologize that it's morphed into more than that. I promise my next post will be very soon and it will be all about her. :) Carolinehttp://www.blogger.com/profile/06814472759057652109noreply@blogger.com1tag:blogger.com,1999:blog-4631485974950872263.post-49606868385439376242015-04-08T18:21:00.001-05:002015-04-08T18:21:09.646-05:00The Best Laid Plans<blockquote class="tr_bq">
The heart of man plans his way, but the Lord establishes his steps. -Proverbs 16:19 </blockquote>
We humans plan and plan, but God will continually step and in and remind us that he's in charge. Which is good. His plans are the plans I actually do want to follow, it's just that sometimes I forget that and I make my own plans. That's when things get messed up.<br />
<br />
You're probably wondering what I'm talking about right now. Let me explain.<br />
<br />
Our embryos arrived at our clinic today safe and sound!!! Praise the Lord! We've been waiting for this day for so long and I'm so excited that it is finally here!<br />
<br />
So what's the problem? See, I had set things up so that when our embryos arrived we'd be ready to move right into our first Frozen Embryo Transfer (FET) cycle and in fact had already begun the checklist of things to do during a cycle. I already started taking some of the medication (at this point just a normal birth control pill to add needed hormones to my body), we met with our doctor, Luke and I each had to take antibiotics to be sure certain diseases were not present in our bodies (an annoying FDA regulation) and we each had to have blood draws to check for certain things including, for me, my thyroid hormone levels. This is a common test done when pregnancies are being planned.<br />
<br />
This is where the problem comes in. It turns out I have what's known as Hashimoto's thyroiditis which is the most common form of hypothyroidism. Basically, my doctor explained it by saying I contracted a virus which to my body looked a lot like the hormone my thyroid produces and in the process of attacking the virus it also is attacking my thyroid. My thyroid, therefore, is not able to produce enough of the hormone it is supposed to produce. If you want a better description, click <a href="http://www.endocrineweb.com/conditions/hypothyroidism/causes-hypothyroidism" target="_blank">here</a>.<br />
<br />
The good news is it is very treatable and I will begin taking medication for it tomorrow. The down side is we have to put off doing our first embryo transfer. If we tried to transfer the baby now, I would be at an increased risk of miscarrying, which of course we do not want at all. The doctor said it often takes a few weeks to a few months to get the thyroid healed and back to proper working order, so we're kind of at a wait and see point for when we can try another cycle. In four weeks I will be tested again to see how my levels are looking, if they are improving we'll be able to move forward then. If not, then I'll continue the medication, wait another four weeks and see how things look.<br />
<br />
This is what I mean about humans and making plans. See, I'd built it all up in my mind already, imagining our first transfer taking place in early May, praying and believing the embryo would implant and we'd be having our next child by early 2016. But, like I said, God knows what's best. I just have to stop being all human and making my own plans and expectations.<br />
<br />
If y'all would, please pray for this to pass soon, but also thank the Lord for helping us to find out this important information. It would have been horrible to not know, move forward and put our baby at risk. In the meantime, we'll keep having fun with our sweet Kinsley girl and waiting for God's timing to have our family grow.Carolinehttp://www.blogger.com/profile/06814472759057652109noreply@blogger.com0tag:blogger.com,1999:blog-4631485974950872263.post-83249346811954784662015-03-26T11:54:00.001-05:002015-03-26T11:54:47.654-05:00The Waiting Game and A Fundraising UpdateWell, I'm sure some of you may be wondering what's been happening with our embryos. Unfortunately, I don't have much to report. We're still waiting for them. I'll save you from a long story by just telling you that the paperwork which would have released the embryos last month was lost. We don't know who lost it, either the postal service or the embryo storage facility. Therefore the paperwork has to
be redone and we are waiting for that to happen so we can have our embryos here by
the end of this month.<br />
<br />
Sadness, frustration and impatience. Those are all of my initial reactions to this circumstance.<br />
<br />
I have never been a very patient person. I do not like traveling to places (I enjoy when we arrive, but not the travel time). I want to arrive places quickly. I find myself impatient with other drivers who do not seem to care as much as I do about arriving quickly. At the grocery store, I always try to find the shortest line to checkout in to avoid waiting, even going so far as to change lines if it seems quicker (and then feeling incredibly frustrated as that inevitably turns out to be a bad move). It always feels like waiting is a waste of my time.<br />
<br />
However, I've learned over time (or I should say I'm still learning) that patience is not really about not minding a slow pace, but rather it's more of a help for us to lean on God when we have no control over a situation. I can't force people to drive the speed limit or in the slow lane, nor can I force the paperwork for our adoption to finally go through. I have done everything I can to make this process happen, the rest is up to other human beings. Those humans don't have as much invested in this as I do, nor are they perfect. Mistakes happen. <br />
<br />
I found the perfect quote to help me through this situation: <br />
<blockquote class="tr_bq">
<div style="text-align: justify;">
<em>“The times we find ourselves having to wait on others may be the perfect opportunities to train ourselves to wait on the Lord.”</em> <strong>~ Joni Eareckson Tada</strong></div>
</blockquote>
<br />
Instead of yelling in frustration, getting angry or crying, I'm learning to go to my Lord in prayer. And not to pray that He'll make that guy drive faster or to magically have our embryos here now, but rather pray that I will be patient and wait for His timing. I really have zero control over this situation, but I do have control over my emotions. When I pray over the situation and release the impatience to Him, I really do have a sense of calm and patience. I feel thankful that I don't have to be the one dealing with the impatience anymore. God takes the worry and puts His hand over the situation (Read Phil. 4:6-7). It's so much easier on me that way and I'm so thankful He gives us this avenue of prayer to give our worries and frustrations up to Him.<br />
<br />
The embryos will arrive when they arrive and it will be in God's timing. We'll have this baby(ies) when the time is right. And that's ok. I can wait.<br />
<br />
I do need to report on our fundraising efforts as well. We've raised so much money towards our probable $10,000-$15,000 adoption costs. So far, with our fundraisers and kind donations by so many friends and family, we have raised $5,788.39 towards our total cost! That is possibly more than half the amount we will spend. We are VERY blessed to have raised so much and we thank each of you that has contributed!<br />
<br />
And we're not done yet. I had a very sweet friend offer to host another Thirty-One party which has now closed, but we're still waiting to hear the total amount from that party, so more will come in there.<br />
<br />
Additionally, we have set up a website through <a href="https://purecharity.com/home" target="_blank">Prue Charity</a> where tax deductible donations can be made. It will only be open for a few days. If you have not contributed, but would like to, you can go to <a href="https://purecharity.com/dockery-embryo-adoption" target="_blank">this link</a> and make a tax deductible donation towards our adoption. We have a goal of $5,000 shown on the website, but over half of that has already been met with a portion of the money we've raised that I mentioned above. Prue Charity also offers a sweet deal to individuals who like to shop online, but also want to help people raise fund towards their causes. If you like to shop online at places like Walmart, Target, Gap, and so many more, check out<a href="https://purecharity.com/rewards" target="_blank"> this link</a> to learn how you can shop and help us out at the same time! However, our fundraiser will only be open through March 31. I'm going to push it on Facebook over the weekend in a last ditch effort to raise more funds. Please pray for us to raise as much as we can. Thank you so much!<br />
<br />
And, lastly, here are some Easter pictures of our sweet Kinsley girl to give you a smile! <br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRYKr96CXf9exfJvS8Oz5Hd0gjn7pqXmpoIGrSIdsNt8o3n2mZHCqgVKvcEk8Fwt3p3Clh4fn_xKemfCmPdDuPBNb5uErrikT8BA_GKk9vhLNWw2bcHoVx5_lon_ZE8BwBFJkFo9eA6wpA/s1600/39+Bunny+Lap+Smile.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRYKr96CXf9exfJvS8Oz5Hd0gjn7pqXmpoIGrSIdsNt8o3n2mZHCqgVKvcEk8Fwt3p3Clh4fn_xKemfCmPdDuPBNb5uErrikT8BA_GKk9vhLNWw2bcHoVx5_lon_ZE8BwBFJkFo9eA6wpA/s1600/39+Bunny+Lap+Smile.JPG" height="320" width="213" /></a></div>
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Carolinehttp://www.blogger.com/profile/06814472759057652109noreply@blogger.com0tag:blogger.com,1999:blog-4631485974950872263.post-89013326419693095402015-02-04T15:00:00.000-06:002015-02-04T17:30:42.368-06:00Fundraising and a Kinsley Update<div class="separator" style="clear: both; text-align: center;">
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<span style="font-size: 12.0pt;">The contracts are almost finished! We've completed our
portion of them and have mailed off the last of the forms needed by our clinic
in order for them to receive the embryos. All that's left is to wait for the
contracts to be signed by the genetic parents and then for the shipment of the
embryos to take place! This is fast becoming a very real thing and my
excitement is very high (my patience isn't as high, but I'm working on it.) We
should have our embryos this month! Yea!!!</span></div>
<div style="margin-bottom: .1pt; margin-left: 0in; margin-right: 0in; margin-top: .1pt;">
<br /></div>
<div style="margin-bottom: .1pt; margin-left: 0in; margin-right: 0in; margin-top: .1pt;">
<span style="font-size: 12.0pt;">I want to publicly thank each of the people who
ordered from Thirty-One for our first fundraiser! It was a lot of fun, and I
hope each of you will enjoy your products very much. Perhaps each time you use
one you'll think of our little snowflake babies and remember how much we appreciate
you helping us bring them home. In case you're wondering, we raised about $500
through our first fundraiser! Yea! Also, if anyone is interested in hosting
their own party while raising funds for us too, please let me know and I can
get your hooked up with the kind Anne Little who will donate her commission to
us (again!).</span></div>
<div style="margin-bottom: .1pt; margin-left: 0in; margin-right: 0in; margin-top: .1pt;">
<br /></div>
<div style="margin-bottom: .1pt; margin-left: 0in; margin-right: 0in; margin-top: .1pt;">
<span style="font-size: 12.0pt;">Now, several of you read my last post and expressed
your desire to help us financially, but didn't want or need any bags. Well, we
have launched our next fundraising campaign. It includes an opportunity to buy
a t-shirt, but also allows for a donation to be made. One small caveat is that
you do have to order a shirt in order to make a donation (though no donations
are required!) Please feel free to do whatever you desire. We super appreciate
any help offered, but realize that money isn't the only way to help. Prayers
are greatly appreciated too!</span></div>
<div style="margin-bottom: .1pt; margin-left: 0in; margin-right: 0in; margin-top: .1pt;">
<br /></div>
<div style="margin-bottom: .1pt; margin-left: 0in; margin-right: 0in; margin-top: .1pt;">
<span style="font-size: 12.0pt;">The t-shirts were designed by Luke based on some ideas
I gave him. They say, "Fearfully and Wonderfully Made" and have a
snowflake for the "o" in "wonderfully". It's a simple
reminder that, first of all, each of us is made by our Creator, but especially
a reminder that our sweet snowflake embryos are already created beings with
life as well. While they were created with the genetic material of others and
the help of doctors, all beings are created by the Author of Life in His image.
I hope, if you choose to buy a shirt, that you will wear it with pride and can
use it to share the wonder of life created by God. If you’re interested in a
t-shirt or in making a donation please go to <a href="https://www.booster.com/dockery-embryo-adoption" target="_blank"><span style="color: #ff3a3a;">this link</span></a>.</span></div>
<div style="margin-bottom: .1pt; margin-left: 0in; margin-right: 0in; margin-top: .1pt;">
<br /></div>
<div style="margin-bottom: .1pt; margin-left: 0in; margin-right: 0in; margin-top: .1pt;">
<span style="font-size: 12.0pt;">Additionally, a sweet friend, Amanda Hendrix wants to
help us out too! Amanda has a booth at a flea market in Lincoln, AR. She has
decided to donate all of her profits from the month of February from her sales
at her booth to our adoption fund. She has vintage and homemade items in her
booth. If you’re local and like flea market shopping, go check out her booth,
Cheery Pie, at Back in the Day in Lincoln. There are several awesome flea
markets in Prairie Grove you could stop at on the way home and make a fun day
of shopping while also helping us out! Happy shopping!</span></div>
<div style="margin-bottom: .1pt; margin-left: 0in; margin-right: 0in; margin-top: .1pt;">
<br /></div>
<div style="margin-bottom: .1pt; margin-left: 0in; margin-right: 0in; margin-top: .1pt;">
<span style="font-size: 12.0pt;">Now, I feel that I must say, I HATE asking people for
money. It’s just a personality trait of mine. I’m a people pleaser and asking
people for money isn’t exactly something that generates warm, fuzzy feelings.
However, as we’ve shared our news with others, many of you have asked how you
can help and since we need help, I’m asking for it. PLEASE do not feel
obligated to donate, buy something or try to raise money for us on your own.
We’re so thankful just to have encouragement and support through prayer and
goodwill. So, do what works for you. We appreciate each of you very much!</span></div>
<div style="margin-bottom: .1pt; margin-left: 0in; margin-right: 0in; margin-top: .1pt;">
<br /></div>
<div style="margin-bottom: .1pt; margin-left: 0in; margin-right: 0in; margin-top: .1pt;">
<span style="font-size: 12.0pt;">Now, time for some Kinsley news. Our sweet girl has
seemed to enjoy her first month of preschool. Most days she has a good time
and her teachers say she’s working hard – sometimes at what they want her to do
and others at what she wants to do instead. ;) Having said I’d give preschool a
one month trial run, it’s been quite difficult to decide what really is best.
I’ve gone back and forth so many times and prayed about it a lot. Ultimately, I
don’t think there is a right or wrong answer about preschool. I think she can
get a lot of benefit from school and she could get a lot of benefit from being
home. I just can’t quite decide what I think we should choose. But one thing I
think is very true is that Kinsley is a special little girl in so many ways.
Because she is nonverbal and her communication skills are limited, it can take
quite a bit of time for new people working with her to figure out the best ways
to help her. Additionally, she often takes many, many repetitions of new things
in order to learn or understand them. Therefore, I think we need to give
preschool more time before making a final decision. So that’s what we’re going
to do. Please continue to pray for Kinsley and Luke and I as we try to figure
it all out.</span></div>
<div style="margin-bottom: .1pt; margin-left: 0in; margin-right: 0in; margin-top: .1pt;">
<br /></div>
<div style="margin-bottom: .1pt; margin-left: 0in; margin-right: 0in; margin-top: .1pt;">
<span style="font-size: 12.0pt;">Kinsley has had some appointments lately. She had a
check-up with her neurologist that was good, but mostly uneventful. We have
increased her latest seizure medication again. She’s now taking three different
ones. Her seizures still happen on a weekly basis, but remain mostly mild and
non-harming. Please continue to pray for the best in regards to her seizures.
I’d love for them to be gone completely, but that seems to be extremely
unlikely to occur. So, we’re thankful she’s doing as well as she is with them
and pray that will continue.</span></div>
<div style="margin-bottom: .1pt; margin-left: 0in; margin-right: 0in; margin-top: .1pt;">
<br /></div>
<div style="margin-bottom: .1pt; margin-left: 0in; margin-right: 0in; margin-top: .1pt;">
<span style="font-size: 12.0pt;">She also had an eye checkup last week. Her crossing
was slightly reduced from last time which is a praise! We’d like that to
continue to decrease if possible. She still has to wear her eye patch six days
a week for six hours a day. It’s quite a bit of time actually, but she does it
like a champ. One small issue we’ve had is that her sensitive skin has begun to
react to her patches sometimes and recently it even pulled her skin off in one
small area. Poor girly! I felt so bad, but she acted like it was no biggie.
She’s such a tough girl. The doctor gave her a two week break from patching to
help her skin heal and gave me some ideas of how to stop the reactions. </span></div>
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<span style="font-size: 12.0pt;">Please continue to keep Kinsley’s vision in your
prayers. I’m not sure I ever posted about the results of Kinsley’s sedated ERG
last October. At first I didn’t want to talk about it because it made me sad,
but then I just forgot to post. But we found out that she does have some
retinal degeneration. Specifically the ERG showed signs of early retinal
dystrophy. It showed that all of her rods and cones are affected at all times.
This means that her vision is always mildly affected – in the dark, color
vision, at a distance, etc. Unfortunately there is absolutely nothing that can
be done about it. We were told that it could get worse as she ages, but could
remain the same. We will have to have yearly ERGs done to track the progress.
This is a typical issue with people with MEB, so no surprise, but still not
happy. If it does worsen, she could eventually be legally blind. I don’t have
to tell you how much we’d hate that. This poor girl already has so many things
she has to battle. Should she have to battle blindness too? It really breaks my heart to think about it, so I don't since I can't do anything about it. But the positive is that we believe she’s always had this
since she was born. We have no reason to think it’s worsened as she’s grown
older because her visual ability has never changed for the worse. Will you
please keep this issue in your permanent prayers? We want her vision to stay as strong as it can and we know and believe God can make that happen.</span></div>
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<span style="font-size: 12.0pt;">On a happier note, Kinsley continues to work hard and
progress at therapy. She is still working on walking and I’ve come to realize
it’s going to be an even longer process than I thought to get her to walk
completely independently, but that is ok. Each month that passes, she gets a
tiny bit better. She can use her walker for over 100 feet independently (as
long as there aren’t too many turns or obstacles). But, she’s also greatly
improved in her ability to turn and control where she goes in it. It’s a work
in progress, but she’s slowly improving. Completely on her own, she is still
able to take 5-6 steps at a time each day, but her balance continues to be a
problem. It’s something that will get better. She just has to practice a million
times and eventually her body and brain will develop muscle memory. It’s slow,
but it’ll happen.</span></div>
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<span style="font-size: 12.0pt;">Her fine motor skills are improving as well! She's able to put shapes in a shape sorter with minimal help on most occasions and no help at others. She's developed a pincer grasp which is huge! But she's still only using it in a specific context and hasn't fully transferred the skill to eating yet. She can do it while eating with a little cuing, but I know she'll do it independently soon. :)</span></div>
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<span style="font-size: 12.0pt;">Language development continues to be very slow as
well, but she is making progress. Her receptive language has developed far
beyond where she was last year at this time. Then she understood a handful of
words or phrases, but now she understands over 30! She is still babbling and
makes sounds that sound like words like mama, dada, up and yeah. She doesn’t
use them consistently nor necessarily for meaning, but I know she hears them
enough that she wants to say them too. She is still using her three main signs,
but we’ve been working on bye-bye for forever and we FINALLY see progress!
Instead of signing eat (which is what she was doing for a long time) when we
tell her to say bye she reaches out and touches your hand instead. Not exactly
right, but much closer. She’s also progressing in her use of PECS (Picture
Exchange Card System). She is now able to consistently request the toy she
wants by choosing the correct picture when given two picture options (like a
picture of a car toy and piggy bank toy). Our goal and belief is that with this
ability we will move into requesting more and more things using pictures of
items. Eventually the goal will be to move to an electronic device to help her
speak. Her speech language pathologist told me a few weeks ago that with as
well as Kinsley is doing at this age with her PECS that she believes she will
be able to use a device eventually. We would love to be able to hear Kinsley
“talking” some day even if it’s with the help of an electronic voice. Please
pray for this as well!</span></div>
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<span style="font-size: 12.0pt;">We appreciate and love all of you who support and pray
for our family both for Kinsley and for our adoption. Our family has some
exciting things going on right now and we are so blessed to have you all on the
journey with us! Now, here are some recent pictures of our cutie pie Kinsley!</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH4Zt1ay55H54U_AqFrbpM_E8dT6SzpSeLoienhk4BiqYIIFTMq6BopxRuJGuJ5gLBEbtoHcijqjGKBRmjxi-DQV52xYJt7tnC34gyyV5fCx-Eh-ppq5t2mSovaWoQ-r44yQuP4Lpm686K/s1600/IMG_5572+1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiH4Zt1ay55H54U_AqFrbpM_E8dT6SzpSeLoienhk4BiqYIIFTMq6BopxRuJGuJ5gLBEbtoHcijqjGKBRmjxi-DQV52xYJt7tnC34gyyV5fCx-Eh-ppq5t2mSovaWoQ-r44yQuP4Lpm686K/s1600/IMG_5572+1.JPG" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Working hard during OT</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXlOdqjkLVeYOqDXoUmBsD343pO0ne6LFbH4BB4G5TKVDsHAU4HXoUOqMneQ0Ttdr3rDf6uisA4kd06UEt8YRabzEMJTMqIgkfvz8QDVo0FwIMTshnDCqeCHC0etX0oNRBocFrFvLgFbLQ/s1600/IMG_5604.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXlOdqjkLVeYOqDXoUmBsD343pO0ne6LFbH4BB4G5TKVDsHAU4HXoUOqMneQ0Ttdr3rDf6uisA4kd06UEt8YRabzEMJTMqIgkfvz8QDVo0FwIMTshnDCqeCHC0etX0oNRBocFrFvLgFbLQ/s1600/IMG_5604.JPG" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Having fun during a Granny D visit</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipIbHMraFHvf3MjT4YwuYCfds3eVgjPHdjdJEJDK3zYNUwNR6l5PkH5G8fj2VOE4D5sb8VTSBi9QxI4nR4RB2lKuxi8dNQ4qnCUKfxtYbEYxB6cYEAk1syk85o_e5cfSrwiS5PI3XKhe3I/s1600/IMG_5595.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipIbHMraFHvf3MjT4YwuYCfds3eVgjPHdjdJEJDK3zYNUwNR6l5PkH5G8fj2VOE4D5sb8VTSBi9QxI4nR4RB2lKuxi8dNQ4qnCUKfxtYbEYxB6cYEAk1syk85o_e5cfSrwiS5PI3XKhe3I/s1600/IMG_5595.JPG" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sweet Kinsley Girl</td></tr>
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<br />Carolinehttp://www.blogger.com/profile/06814472759057652109noreply@blogger.com5tag:blogger.com,1999:blog-4631485974950872263.post-34692905850893456542015-01-14T21:57:00.002-06:002015-01-15T13:10:58.219-06:00Our Embryos are Coming Soon! Could you help us maybe?<span style="font-family: inherit; font-size: small;">As I posted last time, we have been matched with a family who would like to adopt their embryos to us! We are so excited and praising God for this. We are currently working on the legal contracts to transfer the embryos away from their genetic family to us. We are so thankful to this family (who has chosen to remain anonymous) for choosing us to be the family for their embryos. It is an honor. This phase should take 1-3 months (we are one month in, so hopefully we'll have them here by March!) Now, without giving away information we aren't supposed to, let me share the lowdown on our snowflakes with you.</span><br />
<span style="font-family: inherit; font-size: small;"><br /></span>
<span style="font-family: inherit; font-size: small;">We are adopting 14 embryos. 14. Yes, that is a large number. In fact we almost said no to the match when we first saw the number. However, we prayed about it a lot and asked for advice from other Snowflake families (others who've adopted embryos through Nightlight like we are). Basically, with embryo adoption there are, very sadly, many embryos who do not survive the process. We've been told that about half of embryos survive the thawing method and then only about one in three survives implantation. Now, obviously those numbers vary greatly amongst each case. We spoke with families who adopted between 10-20 embryos and only 2-4 survived the thaw (each resulting in at least one baby born). But, another family told us they adopted six embryos, thawed 5 of them and had four children born! So, there is no way to tell what will happen with the thawing/implanting process until we actually try it. And no matter what, our 14 sweet babies need someone to adopt them, so why shouldn't it be us? </span><br />
<span style="font-size: small;"><br /></span>
<span style="font-family: inherit; font-size: small;">Our prayer is that all the embryos we thaw and implant will survive. We do not want any to be lost. With that in mind, we plan to only thaw one at a time (they are frozen in cohorts of one and two embryos). Prayerfully that first one will survive and he/she will be implanted alone. With our desire to have all survive, but also to remain sane, we are not hoping for multiples. So our decision (at least to start with) is to only implant one at a time. We don't think having twins or triplets at this point is something we want to have to handle. We know if God has other plans, the single implanted embryo could split into identical twins. In that case we'll make it and we'll be so blessed by each child, but we are not going to actively pursue that. Honestly, the odds of the implantation working are best when implanting three embryos. In that case, I'd be most likely to have one implant. However, two or all three could and can you imagine implanting three embryos and then hoping only one will survive?! Of course not. Each of these little lives are precious and we want each to live if possible. </span><br />
<span style="font-size: small;"><br /></span>
<span style="font-family: inherit; font-size: small;">Which leads me back to our number 14. Our hope is that we will only have to thaw one, implant it and have that result in our next child. Maybe a couple of years later we will try again with the next embryo. We will have to leave all that up to God's will though. If, however, there are embryos left after we feel our family is complete, then we will allow the rest of them to be adopted by another family. Although it will be strange for our children to have genetic siblings in multiple families around the nation, I'd much prefer that than for these sweet snowflake babies to die when thawed or in the womb. I hope that makes sense to you all.<br /><br /><span style="font-family: inherit;">It's so amazing to think about each of these 14 lit<span style="font-family: inherit;">tle lives that ha<span style="font-family: inherit;">ve</span> already begun. I wonder<span style="font-family: inherit;"> now many are boys and how many are girls? Will they all have blon<span style="font-family: inherit;">d <span style="font-family: inherit;">hair <span style="font-family: inherit;">like their genetic siblings? Will they have blue eyes like their <span style="font-family: inherit;">genetic siblings or green eyes like their genetic parents? What <span style="font-family: inherit;">will they be like as t<span style="font-family: inherit;">oddlers? <span style="font-family: inherit;">As teenagers? As grow<span style="font-family: inherit;">n-ups with jobs and families of their own? I am in awe of these 14 l<span style="font-family: inherit;">ittle lives we are being entrusted with and cannot wait to see what God's plans are for each of them. <span style="font-family: inherit;">When I think about our embr<span style="font-family: inherit;">yos<span style="font-family: inherit;"> this is what always comes to mind from Psalm 139:</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><br />
<blockquote class="tr_bq">
<span style="font-family: inherit; font-size: small;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"> </span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span><span style="font-family: inherit; font-size: small;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span class="text Ps-139-14" id="en-NIV-16254"><sup class="versenum">14 </sup>I praise you because I am fearfully and wonderfully made;</span><br /><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Ps-139-14">your works are wonderful,</span></span><br /><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Ps-139-14">I know that full well.</span></span><br /><span class="text Ps-139-15" id="en-NIV-16255"><sup class="versenum">15 </sup>My frame was not hidden from you</span><br /><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Ps-139-15">when I was made in the secret place,</span></span><br /><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Ps-139-15">when I was woven together in the depths of the earth.</span></span><br /><span class="text Ps-139-16" id="en-NIV-16256"><sup class="versenum">16 </sup>Your eyes saw my unformed body;</span><br /><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Ps-139-16">all the days ordained for me were written in your book</span></span><br /><span class="indent-1"><span class="indent-1-breaks"> </span><span class="text Ps-139-16">before one of them came to be.</span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></span></blockquote>
<span style="font-family: inherit; font-size: small;">Although these precious souls were not created in the wo<span style="font-family: inherit;">mb of their mother<span style="font-family: inherit;">, they <span style="font-family: inherit;">are still f<span style="font-family: inherit;">earfully and<span style="font-family: inherit;"> wonderfully <span style="font-family: inherit;">made by our Heavenly Father. He knows each of them and knows <span style="font-family: inherit;">w<span style="font-family: inherit;">hat each of their days will be like. I'm so thankful to be the mother <span style="font-family: inherit;">who gets to help <span style="font-family: inherit;">some of these little<span style="font-family: inherit;"> lives continue to lengthen their days. Praise God for this amazing blessing!</span></span></span></span></span></span></span></span></span></span></span></span><br />
<span style="font-family: inherit; font-size: small;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"><span style="font-family: inherit;"> </span></span></span></span></span></span></span></span></span></span></span> </span><br />
<span style="font-family: inherit; font-size: small;">Now, with all of that being said, there are many costs associated with any adoption and that is true of an embryo adoption too. Costs range from application fees, home study fees, legal contract fees, agency fees for storing records, embryo shipments, storage fees for frozen embryos, however many Frozen Embryo Transfer (FET) cycles we have to go through, medications, etc. Nightlight says that an embryo adoption can cost from $8000-$17,500. The wide range depends on the differences in home study costs, fertility clinic costs, etc. Also, I think they're only accounting for one FET cycle in their range, so that's not always how it always happens. And it does not include normal health insurance deductibles and costs associated with a pregnancy. Now, we have always been fully aware of the costs we would be meeting with this adoption and know it's a lot of money, but we have remained steadfast in our faith that God will sustain and provide for us. We have some money saved, but we also intend to do fundraising for our adoption. If you are at all interested in helping us fund raise, please continue reading below.</span><br />
<span style="font-family: inherit; font-size: small;"><br /></span>
<span style="font-family: inherit; font-size: small;">Starting TODAY we are doing a Thirty-One Adoption Fundraiser. If you are familiar with the company, they make and sell bags, storage containers, etc. A very kind adoptive mother, Anne Little, is a consultant for Thirty-One and she helps other adoptive families by donating her entire commission from a party to the adoptive family. And she's doing one for us! The fundraiser lasts from today through Monday, January 26th at noon EDT/11 am CST. If you are in need of a new bag, organizing tote, lunch thermal or anything like it please check out <a href="https://www.mythirtyone.com/shop/catalog.aspx?eventId=E5361020&from=DIRECTLINK&extern=true&" target="_blank">this link</a>. You'll be able to order whatever you want and all the commission of the sale will go towards our adoption! </span><br />
<span style="font-family: inherit; font-size: small;"><br /></span>
<span style="font-family: inherit; font-size: small;">However, if bags aren't your thing, never fear, we will have other fundraisers/donation opportunities coming very soon including a t-shirt sale and an online donation site combined in one. As soon as this fundraiser is over we'll start the next one. I'll keep you posted<span style="font-family: inherit;">.</span> Thanks in advance to any of you who choose to help us monetarily! But, if all you can do is pray for us to raise the funds, please do! That will be a humongous help to us!</span><br />
<span style="font-family: inherit; font-size: small;"><br /></span>
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<span style="font-family: inherit; font-size: small;">P.S. If you do want to order from Thirty-One, in January if a customer spends
$35, he/she can choose to purchase a Zip-Top Utility Tote for just $10 (a $35
value) or an All about the Benjamins Wallet for just $20 (a $48 value). <span style="color: #548dd4;">***HOW TO ENTER A SPECIAL: Enter at least $35 in
products at regular price. Then enter the item number of the special followed
by the letter “S”. It will show up in your cart at the special price.<span style="color: black;"> Again, here's the <a href="https://www.mythirtyone.com/shop/catalog.aspx?eventId=E5361020&from=DIRECTLINK&extern=true&" target="_blank">link to the fundraiser</a>.</span></span></span><style><!--
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<span style="font-family: inherit; font-size: small;"><span style="color: #548dd4;"><span style="color: black;">P.S.S. Like Thirty-One, but can't buy anything right now? Well, you can host a party for us and get free Thirty-One items and huge discounts while at the same time raising funds for our adoption! Anne will allow any of our friends to host a party as a fundraiser for us too! How amazing is that? If you are interested, PLEASE let me know. I'd love to hook you (and our adoption funds) up!</span></span></span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTTtHWUPfHPCjR4KoHD3UeuGQmU6puOAbj0HTJY7pbtaeMZScxc1hoKRuJBbPkJ4zfKX9-dmqjNMQ4tEvwa659kse1TKSYrXvdBOCTbQ1kudii4wMzVnvEmaPCGDL_p2uFCG3FWRr5Uy7l/s1600/IMG_5317.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTTtHWUPfHPCjR4KoHD3UeuGQmU6puOAbj0HTJY7pbtaeMZScxc1hoKRuJBbPkJ4zfKX9-dmqjNMQ4tEvwa659kse1TKSYrXvdBOCTbQ1kudii4wMzVnvEmaPCGDL_p2uFCG3FWRr5Uy7l/s1600/IMG_5317.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And in case you were wondering, here's a sweet, silly girl who's doing a good job at Preschool!</td></tr>
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Carolinehttp://www.blogger.com/profile/06814472759057652109noreply@blogger.com1tag:blogger.com,1999:blog-4631485974950872263.post-23380369178852711722015-01-06T14:05:00.003-06:002015-01-06T14:05:42.361-06:001st Day of Preschool!Well, today was the big day. Luke and I just dropped Kinsley off for her first day of preschool. In my second to last post, I mentioned that we had her first IEP meeting coming up and we would be deciding whether or not she should attend a special needs preschool. Well, after visiting the school, talking with the teacher, a lot of prayer and some great help from Kinsley's (now former) developmental therapist, we made the decision to do a trial run of the preschool.<br />
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When Kinsley turned three years old a few weeks ago, she aged out of Early Intervention. Carol, our wonderful developmental therapist, is now no longer able to see Kinsley since she works for EI. We will miss seeing her every week so much, but as she has become a wonderful friend, we will still be seeing her as friends! Anyway, after EI, in Arkansas, children with special needs move on to the 3-5 program which is set up through the public school system. None of it is required, but if we wanted Kinsley to continue receiving developmental therapy, which we do, then this is how it's done. We had the option of meeting with another developmental therapist who works with kids aged 3-5 once a week or we could try the preschool. The preschool has a morning and afternoon class each lasting 3 hours a day Monday-Thursday. We decided the interaction with other children is something we wanted Kinsley to have more exposure to, so we enrolled her in the afternoon class. We are going to do a trial run for one month and see how things are going. If it seems to be overwhelming to her, unbeneficial or in any way wrong for her then we'll take her out and set up the one hour a week with a developmental therapist. Hopefully, though, she will enjoy it and it will help her development to continue to increase. <br />
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As I drove away from the preschool, I fought off tears. I have such mixed emotions about this. I hate to lose the 12 hours a week with her that I'm so used to having. Afternoons were our Mommy and Kinsley time where we would read, play and work on therapy skills together. Of course I also had household chores and errands to do during that time that she would tag along with me for. But, I've felt for a long time now that she needed more opportunities to be around other children. There are 5 or 6 other children in the afternoon class. Of course I don't know any of their diagnoses, but at a glance, each of them is higher functioning than Kinsley. Though it breaks my heart that she is so far behind her peers, I'm thankful she will have other kids showing her an example of what more appropriate play looks like. Additionally, they try to include typically developing children in the class to provide role models for the students which is very helpful as well.<br />
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I will miss our afternoons together, but we will still have every morning (where she still receives her PT, OT, and ST therapies which I attend with her) all day Friday, all weekend and all summer together. That's what I keep telling myself to remember that it will be alright.<br />
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Will you please pray with us that this will be a successful and beneficial change for Kinsley?<br />
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Here's a picture of her right before we drove to preschool. Of course I forgot to take pictures once we got her there! Ugh. Mother of the Year Award goes to me, right!? If I'm not too emotional to think, I'll try to take some when I pick her up.<br />
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<tr><td class="tr-caption" style="text-align: center;">First Day of Preschool!</td></tr>
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Of course, I have to share some pictures from her birthday and Christmas. I can't believe she's three years old! Love this beautiful Kinsley girl. (P.S. Scroll past the pictures for some exciting news!)<br /><div class="separator" style="clear: both; text-align: center;">
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<tr><td class="tr-caption" style="text-align: center;">Happy birthday, Kinsley!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">She got a big girl bed as a combined birthday gift from all her grandparents and Mommy and Daddy! This is her first time checking it out.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The next morning we found her like this. :)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">I think she likes it! And she has transitioned from the crib so well!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Kissing Chuck E. Cheese at her birthday party</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Finding Santa presents in Alabama</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Cousin Ellie, Daddy and Kinsley girl</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Matching cousins by the tree (Dresses made by my amazing Aunt Jana!)</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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And, just in case you were wondering, we have been matched with a genetic family who is going to adopt out their embryos to us! More details to come in the next blog post, but we wanted you all to know and thank everyone for their prayers. We are super excited to be onto the contract phase. Within one-two months from now we should have our embryos at our clinic! Yea! Thank you, Lord!<br />
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<br />Carolinehttp://www.blogger.com/profile/06814472759057652109noreply@blogger.com5tag:blogger.com,1999:blog-4631485974950872263.post-49382702996575209502014-11-15T16:41:00.000-06:002014-11-15T16:41:56.265-06:00Kinsley's Going to Be a Big Sister! (But it's not what you might think…)Yes, that's right, folks. Kinsley's getting promoted. Hopefully this will happen within the next year. We would like to officially announce that Luke and I have decided to do an embryo adoption.<br />
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What's embyro adoption you might ask? Well, we will be adopting embryos (of an unknown quantity at this point) from a family who has gone through in vitro fertilization, have successfully given birth to children and now have embryos leftover which they do not wish to birth, but also do not want to destroy. They have therefore decided to give their frozen embryos to a family they choose through an adoption agency and forfeit any parental rights and allow their embryos to join a loving home who would like to have them.<br />
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Why did we choose adoption? Well, when we found out that we have a one in four chance of any children we have to be born with MEB like Kinsley, we discussed, prayed about and ultimately decided that we would not pursue anymore biological children. I understand that some people may not agree with our decision, but we feel this is right. We believe God blessed us immensely by giving us Kinsely. She is our pride and joy. However I would be lying if I didn't say that every day I wish she did not have to live with this horrible disease. When asked if I could change anything about Kinsley, I have to say that yes I would. I would take away this disease that makes her seize, impairs her vision, stunts her ability to learn, slows her physical progress, stops her ability to speak, and could possibly (but Lord-willing not) weaken her muscles to the point of even death some day. I hate to even say those words, but they are facts about MEB. Does this mean that I think Kinsley is anything less than perfect? Of course not. She is my hero. She works harder than anyone I know to overcome every setback set in front of her. I am so proud to be her mother and I would never, ever go back and not have this sweet girl.<br />
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That being said, with this knowledge, Luke and I do not feel that we could bring another biological child into this world knowing we could be subjecting him or her to MEB. It's just not something I would wish on anyone.<br />
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We always knew we wanted to adopt some day anyway. This just helped us move in that direction earlier than originally planned.<br />
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So, why choose <a href="http://www.embryoadoption.org/" target="_blank"><b>embryo</b> adoption</a>? Well, when we first began thinking about adoption we had never heard of embryo adoption, but a friend of mine (and one of Kinsley's therapists) has worked in the adoption field and mentioned it to me. I was immediately intrigued and researched it quite a bit. With embryo adoption we will be able to implant the embryos into my body and I can carry the child(ren) to term and give birth to them! To say this was exciting to me is an understatement. I LOVED being pregnant and the thought of giving that up was hard for me to do. Also, nursing Kinsley remains one of my favorite life events ever. I am so excited to be able to do these with the children we will adopt as well.<br />
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Additionally, as very strong pro-life advocates, Luke and I feel very strongly that these little frozen embryos deserve and need a family. Their lives have begun, but they are literally frozen in time and need someone who is willing to continue their lives to adopt them. We feel very strongly that this is an important issue and one worthy of pursuing. Our hope and prayer is that one day there will no longer be a need for embryo adoption because all these little embryos will have received families and will have a chance at the life that has already been begun.<br />
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Embryo adoption is not actually seen legally in the same light as typical domestic or international adoptions, but there are adoption agencies who offer this form of adoption along with the typical types. Their hope is that eventually this will be viewed as a legal form of adoption and will have the same laws applied to it. Therefore they follow all the same guidelines as a domestic adoption and keep track of the paperwork just the same. Because of this we had to complete a home study just like all others adopting. This was just (finally*) completed this week and we have mailed it to our adoption agency. Our next step is the matching phase and I so excited for this phase to begin! It is finally starting to feel real to me. Our family profile is going to be given to the genetic families (as they are called by the agency) and hopefully one will choose us to adopt their embryos. If we choose them back we will receive all of their embryos, and can begin the implantation process! The matching phase takes 3-6 months on average.<br />
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We are doing our adoption through <a href="https://www.nightlight.org/" target="_blank">Nightlight Christian Adoptions</a>, but there are others who do embryo adoptions as well. Please feel free to read more about it, but also please ask me any other questions you may have. I know with this post I have not given all the information you may be wondering, but I will certainly be telling more as this process continues for us. Most of all we ask for your prayers as we continue on this adoption journey. We will certainly need them!<br />
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<tr><td class="tr-caption" style="text-align: center;">Family of 3 for a limited time!</td></tr>
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*Our home study actually didn't take much longer than 1-2 months to complete. The draft of the document has been finished since the end of July. However, we have been waiting MONTHS for our FBI background check to be processed and completed. SO frustrating, but also fairly typical. If you are going through an adoption I would suggest either sending off your prints at the beginning of your home study process OR use <a href="http://www.fieldprintfbi.com/FBIHomePage.aspx?PostingID=540&ChannelID=264" target="_blank">Fieldprint</a> to complete your background check. After waiting 3 months for our prints to be processed I was told my prints couldn't be read and that we would have to redo the whole process. Our social worker told us about Fieldprint. They are a company who will complete your prints electronically and submit them to the FBI electronically as well. They claim to get your results back for you in 3-5 business days. I got mine back in 6 HOURS! It was well worth the money (only a little over double what you pay if you mail them in and wait the 3 months for it to be processed.) Please note however, this company will not work for you if you require an apostille copy of your background check.Carolinehttp://www.blogger.com/profile/06814472759057652109noreply@blogger.com5tag:blogger.com,1999:blog-4631485974950872263.post-84351267096554445302014-10-26T16:42:00.001-05:002014-10-26T20:36:30.699-05:00LatelyI figured it was time to update everyone on Kinsley's progress of late. There are several issues which I would like to tell everyone about and request your prayers for.<br />
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First, and at the foremost of my mind is Kinsley's ERG tomorrow. Please be in prayer about this if you can be. It is going to occur at noon tomorrow and she will be sedated for this procedure. This is scary for a few reasons, first sedation is always scary, but can be worse for people with muscle diseases. Thankfully, we know from two previous experiences that she has been through sedation just fine with no issues, but it's still a slight concern. Additionally, she has to fast before it and therefore may only have one cup of apple juice tomorrow morning. No food and no other drink. This is something no toddler would tolerate well, but certainly not one with special needs who doesn't understand why she can't eat anything. So, that should be fun. Now, what's an ERG, you ask? It stands for electro-retino-gram and it will be an in depth eye exam for Kinsley. In my last post I mentioned how the ophthalmologist at the NIH suggested we have this done to check for retinal degeneration of Kinsley's retinas. We were supposed to have it done in August, but Kinsley and I both got the stomach bug the weekend before it was scheduled, so it was rescheduled for tomorrow. Please pray we will get good results which show that her retinas are great without any degeneration and also for the issues mentioned above.<br />
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The next issue we've been dealing with are Kinsley's seizures. Most of you know we've never fully stopped Kinsley's seizures, but they were not happening often and each EEG showed that her brain waves looked pretty good, with only occasional minor spikes that were not hurting her development. Although we'd prefer that not to happen, it was the best it could be if seizures were going to occur. Unfortunately for the past several months we've seen an increase in the number of and intensity of her seizures. They were happening about once a day. We tried several increases in the medications she was already taking, which would help for a little while, but eventually not so much. So a little over a week ago we added a third seizure medication. The great news is that it seems to be helping so far. Since starting it she's only had two seizures and none since last Tuesday. We're very thankful for that and ask that you pray this will continue to work.<br />
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The down side to any seizure medication is the side effects. The main ones we're dealing with this time include behavioral changes, effected sleep and balance issues. With this med, many people are calmer, but it can have the opposite effect. At first it seemed that Kinsley was calmer and happier over all, but as we slowly increased the med to the appropriate dosage, she's been cranky seemingly without cause. We're thinking the medicine is probably the cause. Also, her sleep is somewhat effected. Some nights she's waking in the middle of the night and others she sleeps through, but wakes up an hour or hour and a half earlier than normal for her. The worst side effect is it effects her balance. For a child who already has balance problems, this isn't something we want to see. Her tone is worse which just makes her more wobbly all around while she's trying stand or walk. It's not setting her back too far, but is definitely making her progress in those areas harder to achieve. All of this being said, the side effects should subside as her body adjusts to the medicine. Please pray that happens, but that the medicine will continue to hold back her seizures.<br />
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So, how is the walking coming? Since we've started using her walker, Kinsley's walking has improved so much. She's able to use the walker with minor help in direction changes to walk at least 50 feet. We use it often to walk from the car to different buildings we're entering. It's still easier to carry her around and she's not totally the best at avoiding people and all objects yet, so once we can find a place to "park" her walker inside we're mostly helping her walk by holding her hands, letting her crawl still or just carrying her. The biggest change since last time I posted is that she has started taking independent steps without her walker or holding anything! Around August she started walking in the shallow end of our neighborhood pool a few steps at a time. Slowly that transferred to on the ground and now she can consistently take 6-10 steps at a time. She still loses her balance often so one time she may take two steps and fall and the next she could take 8 steps. And then go right back to two. It's still a work in progress and like I mentioned above, the new medicine is not helping us with it at all. However, it is her PT's goal and mine as well that she be able to walk across a room all by herself by her 3rd birthday (Dec 20). Will you join me in praying this specific prayer to meet this goal? I know it will be more than possible, with God's help, for us to reach this goal. Here's a video of the progress so far:<br />
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Speaking of turning 3, Kinsley will soon be losing her wonderful developmental therapist. Carol has been so wonderful for us the past two years and she will remain a great friend, I'm sure, but sadly Kinsley will not be able to see her anymore when she turns 3. Kinsley's developmental therapy is funded through the Early Intervention program which only goes to age 3. After that she enters the world of public education if we wish to continue developmental therapy. So, we have some tough, important decisions coming up. In just over a week we have Kinsley's first IEP meeting. It's a scary thought, but I know it will be so important. As a teacher I sat through many of these meetings with ease, but as a parent I'm somewhat terrified. I, obviously, want what is best for Kinsley educationally. This doesn't mean she even needs to do anything right now, but there is an option for a half day, four days a week pre-school which we are considering. We think some socialization with other kids would be good for Kinsley, but we still aren't sure if she should do this or not. Thankfully, if she does this, she'll still be able to have the private PT, OT and ST she already has and we will not be changing that at all. Anyway, please pray we'll make the right decision.<br />
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Ok, I've asked for MANY prayers this post. I apologize, but truly I'm praying about each of these things constantly and I'd love your help as well. It's greatly appreciated. I would love to be praying for you as well. I've recently started writing all of my prayer requests down along with the many friends and family I know with their own requests (I should have been doing this long ago, I know). There is so much hurt and hardship in this world, but I'm so thankful God carries us through it all. One of those ways is when we help each other. So please send me your prayer requests as well. I'll add them to my list and will lift you up in prayer as well. "Bear one another's burdens and so fulfill the law of Christ." Galatians 6:2<br />
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Now for some pictures of our sweet girl over the last few months:<br />
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<tr><td class="tr-caption" style="text-align: center;">Playdate with Aubree</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Getting ready to swim with Ellie (this girl loves the pool!)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Splash pad with Cooper</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">First haircut!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">During a recent 8 hour EEG</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Still patching 6 hours a day 6 days a week</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Standing girl</td></tr>
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<br />Carolinehttp://www.blogger.com/profile/06814472759057652109noreply@blogger.com5tag:blogger.com,1999:blog-4631485974950872263.post-9309271894160296132014-06-12T16:27:00.001-05:002014-06-12T16:41:43.186-05:002nd Trip to the NIHWell, we've made our second trip to the National Institute of Health for Kinsley to continue as one of their patients in the natural history study they are conducting on congenital muscular dystrophy. The trip was a few weeks ago and proved to be a good visit with a little bit of new information for us.<br />
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First off, I should explain that as a part of this study, Kinsley participates by being examined by the neuromuscular team, physical therapy and ophthalmology. They record her progress with the disease and will continue to do so as long as we want to continue to be a part of the study. The purpose of the study is to gather as much information about her disease and others like it in order to gain possible support/funding to (hopefully) bring about possible clinical trials which could lead to treatments and even a cure to these diseases. We are also extremely thankful to get to participate so the experts like
Dr. Bonnemann, who we get to see, can give us as much insight into this
rare disease as possible. Also, each appointment is free since it's a part of a research study, so we are very thankful to be a part of it and pray it will be beneficial and truly helpful some day. We only have to pay for the travel and with the generosity of everyone who helped with <a href="http://sweetkinsleygirl.blogspot.com/2013/04/kupcakes-for-kinsley.html" target="_blank">Kupcakes for Kinsley</a> last year (and from others) we have plenty of money for a few more trips! Thank you again to all who helped with that! <br />
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Here's the low down on what we learned this trip. First, Kinsley is progressing VERY well. Compared to what could be happening and what, very sadly, is so often the case with MEB, Kinsley is making so much progress and very quickly. They were very impressed with her gross motor skills and how much she had gained in the last year. Dr. Bonnemann said he has no doubt that she will walk without assistance at some point. Her biggest problem getting there right now is due to balance issues. She is very unbalanced when trying to stand or walk independently. She can stand alone for anywhere from 3-60 seconds at a time, but the longer she does it the more she has to concentrate to remain steady and that wears her down until she falls. He said this is due to her small cerebellum (one of her brain abnormalities), but that with time she will be able to overcome it. Yea! We'll just keep practicing. In the mean time, Kinsley's physical therapist has provided us a walker which she is learning to use like a champ to help her walk without the assistance of a person. We're very excited about this! Here's a video of the first time she tried it out:<br />
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Ok, back to the NIH news. Other than their pleasure with her progress, we didn't learn much new info from Dr. Bonnemann. We were told to increase her vitamin D intake to help avoid possible osteoporosis which could happen in the future. We also asked about any updates on the possible gene therapy they told us about last year. They were still very hopeful about this, but funding is an issue, so PLEASE be praying more funding will be brought in so they can make progress in this. In order for it to be able to benefit Kinsley, a clinical trial would have to take place while she is still healthy. If she starts to have medical issues stemming from her disease then the gene therapy would not help those issues. So please pray for this. Also, if you find it on your heart to give money towards this please let me know and I can give you information on where best to send your money.* <br />
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When we visited with Dr. Zein, the ophthalmologist, we got the most interesting news. Kinsley no longer needs to wear her glasses. Just previous to going to the NIH our local ophthalmologist had suggested the same thing, so we were interested to hear about Dr. Zein would say. Turns out he was right (which we are glad to know). Last year when we went, Kinsley's vision was measured at about -1.25 in one eye and -2.0 in the other. This is somewhat nearsighted and glasses could benefit. However, as MEB goes, children tend to get progressively more and more near-sighted as time goes on. When adding that knowledge to the already near-sighted measure they were getting, glasses seemed like a good idea.<br />
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However, at this visit, Kinsley's eyes measured at a -0.65 in each eye. Dr. Zein said in normal circumstances a prescription would never be given out for this. He and our local doctor both said that there is a margin for error when measuring the eyes, so this likely explains why the numbers are better than last year. However, I'm also aware God could have easily helped them out if He wanted to. Either way we're just very thankful that instead of getting worse, as was expected, her eyes either remained the same or got better. We were also told a normal reading for MEB would be something like -4.0 or -5.0. So once again, thank you Lord for your provision in this area!<br />
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There is one possible concern with Kinsley's vision. Another concern about the eyes with MEB is possible retinal degeneration as time goes on. This would eventually lead to blindness and there is no cure for it right now. After looking at K's retinas, Dr. Zein said he saw something which could be a sign of retinal degeneration, but could also be nothing. The only way to know for sure is through a more invasive test called an ERG. This is a test she will have to be sedated for, so it will happen in Little Rock in August. Please be in prayer about this for us. Right now we are choosing not to worry because we have no real reason to be worried. We're just giving it to God and trusting that no matter the result of the test, He will provide just as he has all along this journey.<br />
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Other than that, we had a nice visit to DC again and got to enjoy some sightseeing, walking in great weather and Kinsley's first carousel ride which she thoroughly enjoyed. Here are a few pictures:<br />
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<tr><td class="tr-caption" style="text-align: center;">Flying to DC (she was so good!)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaTSXutGvrtSbKykxtfngZpD88V9vs4lNM6NHsascFHSi0b-wuRXHs1eUFM-pxvFJph8MmpDn8rGz6eSRBMdqhjKboj2RJgljV4SXpScG9jTJyM-F5P3ZhQfocS0vgjHF7nOw8cVlv6OR1/s1600/IMG_3877.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiaTSXutGvrtSbKykxtfngZpD88V9vs4lNM6NHsascFHSi0b-wuRXHs1eUFM-pxvFJph8MmpDn8rGz6eSRBMdqhjKboj2RJgljV4SXpScG9jTJyM-F5P3ZhQfocS0vgjHF7nOw8cVlv6OR1/s1600/IMG_3877.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Being examined by Dr. Bonnemann (she was not as good!) ;)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWihBSKO1ExXwHrKn-X1kNwxvODvjEmZllDLVGuOwIzBjJmA7k4krCQfku2D03RhLiTaUIwKcJS_IfgxJKxFdCu2Kl52RFGNNyLYGoNpsEyX3RUEzpKLee2mhF7XQsN6D4K-vySnXX9QNj/s1600/10169440_10100226324231931_3583830384911949346_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWihBSKO1ExXwHrKn-X1kNwxvODvjEmZllDLVGuOwIzBjJmA7k4krCQfku2D03RhLiTaUIwKcJS_IfgxJKxFdCu2Kl52RFGNNyLYGoNpsEyX3RUEzpKLee2mhF7XQsN6D4K-vySnXX9QNj/s1600/10169440_10100226324231931_3583830384911949346_n.jpg" height="320" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Riding the carousel on the National Mall</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_1TV3BBDk64cu7NJfZ_9asThBiirNYfB4J6-SFh1E3eESkcKxYuAwfdblV5OfixXhHaRni5syUgXsV1UG3NUGcgYJ9Pxt_hwfeEZJfvDRuKkqXJDw60p2FWqrQRA_nQHqmNjO4E-0Jrq-/s1600/IMG_3893.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_1TV3BBDk64cu7NJfZ_9asThBiirNYfB4J6-SFh1E3eESkcKxYuAwfdblV5OfixXhHaRni5syUgXsV1UG3NUGcgYJ9Pxt_hwfeEZJfvDRuKkqXJDw60p2FWqrQRA_nQHqmNjO4E-0Jrq-/s1600/IMG_3893.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sightseeing after learning the glasses were no longer needed!</td></tr>
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In other news I wanted to let you know that the behavioral therapist we hired has been so helpful and Kinsley's therapy sessions have been SO MUCH better. She tolerates so much better now and is continuing to make progress. We're so thankful. Thanks to all for prayed about that for us!<br />
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Also, here's a newer video of her using the walker at home. Of course she's wearing the same outfit! Enjoy!<br />
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*One very easy way to help fund the research is by using amazonSmile.com when shopping on amazon. If you sign in to amazonSmile then you can choose a charity or organization to receive a portion of the money you spend on amazon. Very simple. Just choose CureCMD and you will be helping to fund the research every time you shop on amazon! And who doesn't shop on amazon?Carolinehttp://www.blogger.com/profile/06814472759057652109noreply@blogger.com4tag:blogger.com,1999:blog-4631485974950872263.post-46188491431280499702014-05-02T13:55:00.000-05:002014-05-02T13:55:54.263-05:00"That the works of God may be displayed"<div style="text-align: left;">
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<blockquote class="tr_bq">
<span class="reftext"><b>1 </b></span>As he passed by, he saw a man blind from birth. <span class="reftext"><b>2 </b></span>And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” <span class="reftext"><b>3</b> </span>Jesus answered, <span class="woc">“It was not that this man sinned, or his parents, but that the works of God might be displayed in him." </span> </blockquote>
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<span class="woc"><b>John 9:1-3</b></span></blockquote>
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When I read this passage I am so strengthened. I like to change the wording so that it's not about a man born blind, but instead about a little girl born with muscular dystrophy and brain abnormalities and weak eyes who also developed seizures. Nothing she nor we did caused this to happen. Instead, she was brought here so that the works of God might be displayed in her. </div>
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Now, Jesus miraculously healed that man born blind. Has that happened to Kinsley? No. But does that not mean God is not working in her? Absolutely not. He has blessed her body so that it overcomes that muscle weakness and grows stronger daily. He led us to the best therapists and blessed them with the knowledge of how to work with Kinsley in just the way she needs. He has given her brain the ability to learn, problem solve and figure things out. He allows her seizures, but has not allowed them to stop her development instead giving her room to grow and flourish.</div>
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So, thank you, Lord! You are to be praised! And thank you, all who love and pray for Kinsley. You are helping so much with every prayer you say. Now, watch and see the works of God displayed in Kinsley:</div>
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Kinsley Standing Independently!</div>
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Kinsley cruising! (And this is a couple of months old. She is much faster and steadier now.)</div>
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Kinsley walking with a push toy!</div>
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Kinsley walks a few steps with assistance (but only a little)!</div>
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Obviously she still has work to do before she walks independently, but we are AMAZED at the progress she has made in the last several months. This time last year Kinsley couldn't even push herself up into sitting! And look where she is now. We're so thankful.</div>
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In other areas of development she is progressing as well, her fine motor control is improving, but that is more difficult to show you. She has gained more hand strength, is starting to isolate her fingers more often, she's much closer to using a pincher grasp consistently and her control with putting objects into small slots or spaces is improving greatly.</div>
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Her language skills are improving as well. She is now using three signs (inconsistently). She's great with the sign for "eat". She uses "more" very consistently in her swing because swinging is one of her favorite things ever. In other areas she will use "more" when reminded. We are also working on "all done" and she has copied that movement a few times. She understands what it means, but using the sign is not as exciting to her since it often signifies the end of something she likes.</div>
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She is also understanding more phrases and words. She's following more directions and showing more and more understanding of what she is supposed to do to complete any task at therapy after only a few reps of being shown how.</div>
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We are so thankful.</div>
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We, of course, have our struggles as well. We've struggled with many tantrums and fits, usually at therapy, for the past several months. Nearly every therapy session would be full of crying, screaming and little work. It's not fun. Not for Kinsley. Not her therapists. And not for her parents. So, we've recently added a behavioral therapist to our mix to help train me and others in ways to help Kinsley tolerate the activities that she does not want to do (any new, hard or unfamiliar tasks). The behavioral therapist spent some time observing and then this past week we began to work on implementing the plan she is forming for Kinsley. It's early to tell, but I am feeling very confident that this will be a wonderful help to Kinsley and to us. Thankfully, for the past month Kinsley already seemed to be showing some maturity and growth and more ability to tolerate, so that therapy has been much easier for the last few weeks. It's a wonderful reprieve, but I'm prayerful that this behavior plan will be something we can use going forward when harder tasks begin to come again. Please be in prayer about this topic specifically. </div>
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My last request is that you pray for us as we take Kinsley back to the NIH in a couple of weeks. We are excited to show them all the progress she has made and are prayerful and hopeful that we will learn more about the progress being made towards the treatment they told us about last year!</div>
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Now enjoy some recent pictures of our sweetie: </div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCfOIvBC8y7QYW7WkyaKngI801i_zsU25Y5EQm8PLRl1ZcknMzEv3xAgat7KgFSoowdaD4Mw-4W-fPRU7BDolqPDOYpApYxYXbgo1BQ7zZ7YdR0Ztn6opwoay-Lar2KctYqokqcg1fAq85/s1600/IMG_6061.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjCfOIvBC8y7QYW7WkyaKngI801i_zsU25Y5EQm8PLRl1ZcknMzEv3xAgat7KgFSoowdaD4Mw-4W-fPRU7BDolqPDOYpApYxYXbgo1BQ7zZ7YdR0Ztn6opwoay-Lar2KctYqokqcg1fAq85/s1600/IMG_6061.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">She loves to be outside. </td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMb2LGyVxU7TPS0AiuSUIjguSss9SLnh1IaUie6gJISiBnf8EIeY2nmwRTkba_Ee2ZEdpZuL2J488d0cYs54MsYl-77bn94gUjPcizn8JGBVSJRMv1dYTwFxLJhXabWKlDLg2bCJrN2sO1/s1600/IMG_3510+1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMb2LGyVxU7TPS0AiuSUIjguSss9SLnh1IaUie6gJISiBnf8EIeY2nmwRTkba_Ee2ZEdpZuL2J488d0cYs54MsYl-77bn94gUjPcizn8JGBVSJRMv1dYTwFxLJhXabWKlDLg2bCJrN2sO1/s1600/IMG_3510+1.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dressed up for church in a beautiful dress (Thank you, Kristin Tomes!).</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjqLrlon1rseHSwfqucHg2DlOfms-odzLIKl02t2efyTAYK-vBbq7G9zhOuBH5WZmCZmwPXxaQTnJjbzz1Z6LGqWR9XBIvXpPJi5S4PkV1tc3DSYPhF0N9uZ9XXqSJkjyfrWjvHB1FznU8/s1600/IMG_5994.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjqLrlon1rseHSwfqucHg2DlOfms-odzLIKl02t2efyTAYK-vBbq7G9zhOuBH5WZmCZmwPXxaQTnJjbzz1Z6LGqWR9XBIvXpPJi5S4PkV1tc3DSYPhF0N9uZ9XXqSJkjyfrWjvHB1FznU8/s1600/IMG_5994.JPG" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">In the flower girl dress I wore in my Aunt Lisa's wedding.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwf_ADjPcG13foUnKkG_4ryRX4kmarDySu6ZwmKFqS8WioEExz7-LYTQe-3BCEwv50GiowoDdHO1S-F0IHnBBmBeh9tHCl_YJA3adc2KyryzwqYiuzcNuwgf34PMsQ3Cw_nxMO0joLzojW/s1600/IMG_3753+1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgwf_ADjPcG13foUnKkG_4ryRX4kmarDySu6ZwmKFqS8WioEExz7-LYTQe-3BCEwv50GiowoDdHO1S-F0IHnBBmBeh9tHCl_YJA3adc2KyryzwqYiuzcNuwgf34PMsQ3Cw_nxMO0joLzojW/s1600/IMG_3753+1.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Loved seeing our cousin, Ellie, recently!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpeF12M-Cm_DoWw_lG3LPVl0HGWYprdqggk-i7V1X3xnqGEDCK1vHtUeOmswAHAW3Iz5GpgVpAAeop4-goB_4aLFOxmF8NJw1HfeyTBIqOMmY98xFnEzrIWnZQ8dJmk0ATeG51Yt9fDMip/s1600/IMG_7350.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjpeF12M-Cm_DoWw_lG3LPVl0HGWYprdqggk-i7V1X3xnqGEDCK1vHtUeOmswAHAW3Iz5GpgVpAAeop4-goB_4aLFOxmF8NJw1HfeyTBIqOMmY98xFnEzrIWnZQ8dJmk0ATeG51Yt9fDMip/s1600/IMG_7350.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Easter girl</td></tr>
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Carolinehttp://www.blogger.com/profile/06814472759057652109noreply@blogger.com6tag:blogger.com,1999:blog-4631485974950872263.post-48668173980514195642013-12-20T12:06:00.001-06:002013-12-20T12:09:44.011-06:00Happy 2nd Birthday, Sweet Kinsley Girl!<div class="separator" style="clear: both; text-align: center;">
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaVcHUegPj_bAEkr1beC9V23QaJrreggmH-iokbrNI6CEIyao5eooZt1vQD5A8vBhBI-HZFJmB9cedkKQyYF8rxnqDNW7C0I2q9bXX2sicKcIgL9WN9ZeWXK8S40LU9yBck0ObuKwMv8CR/s1600/IMG_1558.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaVcHUegPj_bAEkr1beC9V23QaJrreggmH-iokbrNI6CEIyao5eooZt1vQD5A8vBhBI-HZFJmB9cedkKQyYF8rxnqDNW7C0I2q9bXX2sicKcIgL9WN9ZeWXK8S40LU9yBck0ObuKwMv8CR/s320/IMG_1558.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kinsley Abigail, Born December 20, 2011 at 12:38 pm</td></tr>
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How can it have been two years since this precious girl came into this world? In some ways time flies and it feels like just yesterday that I first held her in my arms. In other ways this journey through understanding her diagnosis and getting TONS of therapy and watching each milestone and inchstone (as many special needs parents call the tiny steps of progress in between each milestone) slowly come has felt like a lifetime. My life is TOTALLY changed because of this sweet girl, but I wouldn't have it any other way. Kinsley is the brightest little light shining for us when we go through the hard times. It's wonderful to think that through all the hardship that comes with Kinsley having MEB, that Kinsley herself is that one that makes it all worth it and all ok. She is the hardest working, strongest willed, little miss independent, beautiful girl who we are SO proud of. So on this second anniversary of her birth I want to just take a moment to celebrate all that she has accomplished in her little, beautiful life this past year.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6DNgqFqWUBB-4Bg2y5Cysv5ytCQU5MJ9GhcpoA25vL_CxKHv-xZ-vIbKNzTMuBmJXBbjcrlWgf116l6RZc6qRs1QREMUTp-Ehg0PrfOGqJrzrg9626YY2t069DivnJPRhaHoJzc-x6zn_/s1600/IMG_0692.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6DNgqFqWUBB-4Bg2y5Cysv5ytCQU5MJ9GhcpoA25vL_CxKHv-xZ-vIbKNzTMuBmJXBbjcrlWgf116l6RZc6qRs1QREMUTp-Ehg0PrfOGqJrzrg9626YY2t069DivnJPRhaHoJzc-x6zn_/s320/IMG_0692.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">December 20, 2012</td></tr>
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At 1 year old Kinsley could:<br />
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<ul>
<li>Hold her head up in any position </li>
<li>Sit unassissted</li>
<li>Roll from belly to back</li>
<li>Roll from back to belly</li>
<li>Bear weight through her legs </li>
<li>Grasp objects</li>
<li>Bring objects to her mouth</li>
<li>Bang two objects together </li>
<li>Track objects with her eyes </li>
<li>Smile socially</li>
<li>Laugh at funny sounds</li>
<li>Recognize familiar songs</li>
<li>Understand cause and effect toys </li>
<li>Respond to her name (inconsistently)</li>
<li>Make vowel sounds and blow raspberries</li>
</ul>
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<tr><td class="tr-caption" style="text-align: center;">December 20, 2013</td></tr>
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At 2 years old Kinsley can:<br />
<ul>
<li>Do all of the above</li>
<li>Achieve sitting from laying down on her belly or on her side </li>
<li>Crawl </li>
<li>Stand with support from a wall, at a table, couch or standing toy </li>
<li>Stand without support for over a minute (inconsistently) </li>
<li>Stand up from a bench unassisted and remain standing for 30 seconds (she did this for the very first time TODAY at therapy and she did it TWICE!)</li>
<li>Walk 3-5 feet with support</li>
<li>Hold and drink from a sippy cup</li>
<li>Drink from a straw </li>
<li>Self-feed with hands</li>
<li>Self-feed with a spoon (inconsistently)</li>
<li>Clap her hands </li>
<li>Remove rings from a ring stacker</li>
<li>Put rings back on a ring stacker (inconsistently)</li>
<li>Put objects into a container</li>
<li>Remove objects from a container</li>
<li>Understand more complex cause and effect toys </li>
<li>Babble many sounds including any combination of mamama, dadada, bababa, papapa, or lalala</li>
<li>Reach for me when I hold my arms out </li>
<li>Understand words or phrases like, "Give kisses," "Look at Mama," "Up," "No," or "Where's Daddy?" and (inconsistently) follow the command if one is given</li>
<li>Sign the word "Eat" (a new skill she mastered over Thanksgiving break and one that she uses VERY consistently!)</li>
<li>Use a switch (communication device) to ask for an object</li>
<li>Maintain eye contact (when she wants to)</li>
<li>Play Peek-a-boo</li>
<li>Recognize (very) familiar people and smile at them</li>
</ul>
<br />
I am sure there are more accomplishments I am forgetting. I also realize for a typical 2 year old this is not the list of accomplishments you would be looking for. However, this list is not to elicit any pity or saddness from any of you wonderful readers. This list is something we are SO proud of. This little girl works SO hard. Not many 1 or 2 year olds are constantly asked to work out and do tasks they don't want to do. Kinsley is and although she's not afraid to complain about it (she definitely isn't delayed in being able to throw a fit like any 2 year old might), she does the work anyway and has made SO MUCH progress. And most of that list was accomplished in the last six months. She has made such steady progress since she began to get herself into sitting and we couldn't feel more blessed. We are well aware that things could be so much worse for our sweet Kinsley and we just want to PRAISE GOD that she can do all that she can and that the progress is just continuing.<br />
<br />
Looking back on how much Kinsley has learned in the last year I am reminded of the verse I mentioned in my <a href="http://sweetkinsleygirl.blogspot.com/2012/12/an-update-on-our-daughter.html" target="_blank">first blog post</a> about Kinsley written a year ago: <br />
<blockquote class="tr_bq">
<i>“‘For I know the plans I have for you,’ declares the Lord, ‘Plans to
prosper you and not to harm you, plans to give you a hope and a
future.’” </i>Jeremiah 29:11</blockquote>
One year ago when I first told you all about Kinsley and what her life may be like we did not know what the future held and for many things we still don't. But this year of progress and accomplishment has shown us that God is with us! Kinsley's future is blessed because of Him. He has given her SO many abilities already that we were never sure she would accomplish and I fully believe that He will continue to bless her in the years to come. However, I feel the need to add that I know that even if or when the accomplishments stop, God STILL has a plan for her and I know it will be a plan to prosper her. My prayer is that the coming year and years will be filled with continued blessings for our Kinsley girl, but even when the hard times come that we will continue to lean fully on God and trust His guidance in everything.<br />
<br />
So, happy birthday, Sweet Kinsley Girl. You are truly an inspiration to your mama. I love you, sweet girl!<br />
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<br />Carolinehttp://www.blogger.com/profile/06814472759057652109noreply@blogger.com6tag:blogger.com,1999:blog-4631485974950872263.post-86235333699772369792013-10-14T11:37:00.002-05:002013-10-14T11:37:40.016-05:00PROGRESS with a capital P-R-O-G-R-E-S-SWell, the past 2 and a half months have brought some wonderful things to Kinsley's life (and therefore ours). Kinsley has made some wonderful strides in her physical abilities and I am so excited about them! In my last post I told how she had learned to push herself into sitting and had done it a couple of times. I am proud to say she has continued to do so and it is no big deal for her at all anymore. It seems that this process being done over and over by her has been a huge help for her. It has strengthened her arms, but also her core and she now is able to get herself up on her hands and knees and can CRAWL forward! Ok, so she only goes about a foot or two before laying down, but it is still AMAZING progress for her. There were definitely times where I wondered if she would get this, but we see it happening! It's wonderful to see her so motivated to move. She does still fatigue easily and this is partly why she doesn't go far, but also it's still an uncoordinated move for her and she's still figuring out the whole reciprocal process of moving one arm and the opposite leg at the same time. Usually at this point she moves one limb at a time, but it's improving and she does very, very well with assisted crawling now (where we hold her legs and move them as she moves her arms forward). Anyway, we're so thankful to the Lord for this ability that she is developing. Her PT told me she believes by Christmas we can have her crawling all over and getting into everything! What a wonderful Christmas gift that will be. I have been waiting so long to see this sweet girl with some mobility and it is SUCH a blessing that it is (nearly) here.<br />
<br />
In other progress she has also made great gains in her standing abilities. She has stood unassisted for 10 seconds! That is her max right now, but we've had several other 5-9 second bouts as well. She received some new braces to wear while she is working on standing. They help keep her feet stable as she seems to have weak ankles and she was standing on both the inside and outsides of her feet at different times (very wobbly feet). So, we got some AFOs and the first time she tried them was the first time she stood unassisted for any time at all. They are a great help to her and it's so exciting to watch her make this progress! She's also done some very long 30 second stretches with support only on her feet (she supports her whole body except for her feet which we hold down for her - this is the hardest assisted standing there is). It's awesome to see her doing so well! She is still very weak in her core and this makes it difficult for her to balance, but she is doing so much better than before. PTL!<br />
<br />
Kinsley has also begun to use her spoon to help feed herself. She is so cute doing it too. I always make a big deal when she does the whole process of picking up her spoon, putting it in her mouth, getting the food off and then returning it to the bowl. She loves that and acts so pleased with herself. It's wonderful in two ways. First that she's making progress with self feeding and second that she is enjoying and understanding praise from others. She does not scoop the food herself yet and her grip can be iffy (sometimes the spoon gets turned over), but still this is big stuff for her and she keeps getting better at it. :)<br />
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That being said I still dearly wish for all of your prayers for our sweet girl and for our whole family. Kinsley is doing so well in her progress, but she will forever be behind. I know this, but I struggle to accept it. It's very hard as a mama to watch your child struggle and be "different" from other children her age. One thing that is starting to show itself more and more are some symptoms of autism. We were told this happens with some children with MEB (because of the brain issues). Kinsley is VERY delayed in receptive language skills and her social skills as well. It is difficult to understand. She can sometimes be very involved and engaged with me or Luke or her grandparents, etc, but very often she seems to be in her own world as well. I think for me this is the hardest part of this whole disease. I just want her to have a happy life, but I want that happy life to include us bringing her that happiness. I just want the very best for her, so I feel strongly about getting her all the therapy and help she can receive. Her developmental therapist and I are working on new ideas and skills to help her with these areas. Her speech therapist is too. And it all helps, for which I am thankful, but it is also very hard. It feels like a constant battle to get her attention at times, but at other times she does great. I try to focus on the positive, but I'd love prayers for this to get easier or at least for there to be noticeable progress in these areas. We're also trying to decide what further therapies (like ABA) may be appropriate for Kinsley in the near future, so please pray for us to have wisdom to make the right choices for our sweet girl. For we know that "the prayer of a righteous man is powerful and effective" (James 5:16b).<br />
<br />
I think this is all I will post for now, but I'll leave you with some fall pictures of our Kinsley girl (and her crawling progress!)<br />
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<br />Carolinehttp://www.blogger.com/profile/06814472759057652109noreply@blogger.com6tag:blogger.com,1999:blog-4631485974950872263.post-34232967036920625742013-07-29T10:43:00.000-05:002013-07-29T10:43:31.340-05:00Problemettes and ProgressThe past month and a half have been as busy as ever! Kinsley has had some minor medical issues pop up which I will tell you about (hence the "problemettes" in the title), but she has also shown us some fun steps of progress which I am excited to share with you.<br />
<br />
Problemette #1: Kinsley has a peanut allergy. :( Around the middle of June I made Kinsley a peanut butter sandwich for dinner one evening. She'd tried peanut butter once before, but didn't really like it, so I didn't give her anymore for a few months. But people say you should keep trying foods as it takes up to 10 times for a child to decide whether or not they really like a food. So we tried the food again and she seemed to like it this time since she ate the whole sandwich. Yea! An easy food to give her to get some protein and for on the go times. But, alas it was not to be. Within two hours of eating it Kinsley began to cough weakly and she got red around her mouth. Then the redness spread and continued to spread until she was covered in hives all over her body. Poor baby. She did not enjoy that. I gave her a dose of Benadryl and that quickly seemed to help the problem. The coughing stopped soon after that. We took her to the ER to be on the safe side. They said it was good to bring her in, but that thankfully she was doing fine. They prescribed a steroid treatment for a few days to be sure there were no re-occurrences from the food still being in her system. Thankfully she seemed totally fine the next day with no more hives and nothing else popping up. We followed up with our pediatrician and we've set up an appointment with an allergist to do a nut panel and be sure she's not allergic to any other nuts. So, like I said, this is a problem, but honestly, of all the things we are dealing with, this is a minor one.<br />
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Problemette #2: Kinsley has to have her liquids thickened, at least for the time being. One thing Kinsley has always been good at is eating and drinking. She's never been a picky eater and likes most everything she tries. However, sometime in May she began screaming during meals and it continued for many days. Not knowing what was wrong we set up several appointments to try and figure it out. One appointment was to have a swallow study done just to see if there was something going wrong while she was swallowing. Another appointment was with our pediatrician just to be sure she didn't have strep throat or something else causing pain while swallowing. As it turned out neither of those things was it. She had an ear infection and it was just causing her to be irritable especially while chewing and swallowing (as it moved her ear). However, we decided to keep the swallow study appointment just to be on the safe side. We were not expecting to see anything on the study, but that was not to be. For those who don't know, a swallow study involves the patient swallowing different foods and liquids of different thicknesses and watching the swallows on an x-ray like machine. Kinsley did great swallowing all the foods and liquids up until we got to the straight liquids. Unfortunately at that point she silently aspirated twice. This means the liquid went down the "wrong pipe" as we usually like to describe it, but without her coughing or choking or anything. Obviously, this can be a problem as it can lead to pneumonia eventually if left untreated.<br />
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The thinking is that she has some low-tone in her mouth which was causing her to not control a large amount of liquid in her mouth at one time without aspirating. So, for now we are adding a thickener (at nectar thickness for those who are wondering) to all her liquids. She'd swallowed that thickness during the study with no issues. We also added a second speech therapy session each week after the study was done. We're continuing all our speech goals as before, but we are also now working on some oral motor development by doing oral motor exercises. The hope is that these will build up her mouth strength and that within a few months she may not need anymore thickeners. We shall see. Once again, this is a problem (and believe me I am TIRED of problems popping up), but once again, it's not too big a deal. She continues her normal diet and all that we have to do differently is squeeze some packets into her drinks which I am more than willing to do to keep her healthy. :)<br />
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Kinsley's had several other appointments since my last post too including three visits to her pediatrician (one sick, one well and one mama thought maybe she was sick, but thankfully not), developmental pediatrician, audiologist (who gave us a good hearing report), neurologist (with another pretty good EEG like the last one), opthamologist and of course all of her therapy sessions (now at 8 sessions a week!). We've received good/normal reports from each of these for which I am very thankful. Of course it has kept us all very busy!<br />
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Progress wise Kinsley has added a couple of exciting skills to her repertoire of late. First of all, about a month ago she started babbling "mamamama"! I love to hear her say it, though of course she does not say it with meaning yet, but it gives me high hopes that some day she will. But, even better is that in the last week she has even begun to imitate it! She doesn't copy me every time, but she has done more times than I can remember now, so she definitely seems to have that imitation down! This makes me one happy mama!<br />
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Secondly, Kinsley has FINALLY learned how to push herself from her tummy into sitting all on her own! We've worked on this for a long time, so it's nice to see her finally make it there! Her arms have been so weak for so long that I wondered if she would ever be able to do this, but she's done it twice in the last week, so we are so excited for this step of progress! This shows a great amount of strength has been gained in her arms since she began therapy for which we are very thankful. Hopefully this will lead to more exciting things (maybe crawling next?! Fingers crossed!).<br />
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I must admit that it is sometimes difficult for me to be patient and not worry about Kinsley's abilities. I sometimes fear she will never "make it" to things like walking or communicating. This is a hard road to walk. But I am only admitting this in hopes that I can ask for your continued prayers and encouragement. I know Kinsley can do these things because I know God is in control. I just have to be aware that it may take a LOOOOONG time for some of these things to come, but that does not mean I must give up. Take, for example, the fact that she learned to sit unassisted at nine months, but it took until she was 19 months to actually get herself into sitting. Ten months is a long time, at least for normal development. But that's what I must remember. She's not going through a "normal" development. This is at her own pace and I can not control that. All I can do is persevere and keep pushing her. This means fighting the fears, doubts, saddness, physical, mental and emotional fatigue and any other temptation to wallow in self-pity sent by Satan. I will fight to help my sweet daughter do all and be all that she can be. Praise the Lord that he is here to help because I know I could not do this without Him.<br />
<blockquote class="tr_bq">
<span class="text Deut-31-6" id="en-ESV-5735">"Be strong and courageous. Do not fear or be in dread of them, for it is the <span class="small-caps" style="font-variant: small-caps;">Lord</span> your God who goes with you. He will not leave you or forsake you.” Deuteronomy 31:6</span></blockquote>
I would like to also tell you about a blessing I have received. I have officially been offered a posiion as an adjunct university supervisor to student teachers by Harding University (for those who may be confused, Harding has a satellite campus in Northwest Arkansas for whom I will be working). I will be supervising four student teachers this fall meaning I will observe each one four times and will be guiding them towards becoming fully prepared to teach after this semester. I by no means think I am the best teacher ever, but I have hope that I can guide these soon to be professionals towards a successful start to their careers. I am nervous, but very excited about this blessed opportunity. I am most excited that this work will only require me to be gone one day a week from Kinsley so I can continue to keep her and her therapy and other appointments as my focus. Luke will be able to care for Kinsley on the one day I work as he always has one day off during the school week. Thank you, Lord for these blessings!<br />
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I will leave you with some pictures from our summer vacation which included a trip to Memphis to spend time with college friends and their kiddos, my parents house in Alabama and a week at the beach in Florida! Fun times! :)<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6BEZ8y32pqDsDL3yMtGmv_IrGC7D-Vc01mkIsna7Ux8rpj890zfvxbK2gJmQPMmckRdlHCjIO-VrZCFteOwPyUVPMzdLO6h1Hv0fNP10yFjXMvRNyJCc4B5xeD9wUI7Uus0oIgColA0p2/s1600/IMG_4983.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6BEZ8y32pqDsDL3yMtGmv_IrGC7D-Vc01mkIsna7Ux8rpj890zfvxbK2gJmQPMmckRdlHCjIO-VrZCFteOwPyUVPMzdLO6h1Hv0fNP10yFjXMvRNyJCc4B5xeD9wUI7Uus0oIgColA0p2/s320/IMG_4983.JPG" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At the Memphis Zoo</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Levi and Kinsley at the Splash Pad in Memphis</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Beach baby!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Grandaddy David and the beach baby :)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Family picture on the 4th of July</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">A very windy evening at Rosemary Beach!</td></tr>
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Carolinehttp://www.blogger.com/profile/06814472759057652109noreply@blogger.com4tag:blogger.com,1999:blog-4631485974950872263.post-21496405699657174562013-06-10T15:47:00.000-05:002013-06-10T15:47:02.195-05:00LatelySo I realize it's been FOREVER since I've posted. Life is just constantly busy and every time I found myself with time to sit down and type I've decided I'd rather read, watch Netflix or nap. Not to mention that I spent the last two months trying to get 60 hours of professional development in by May 31 while Kinsley napped just to keep my license up to date so I can maybe sub once a month or tutor or SOMETHING next school year. Of course I should have done many hours in previous months, but I was a tad distracted. But I digress.<br />
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Kinsley has had a busy month and a half since I lasted posted. We added a third medication for her seizures at the beginning of May in an attempt to get them totally under control. She started taking a steroid which had been shown to work well with other kids with similar brain abnormalities at stopping their seizures. We were told it would probably work to stop the spasms while she was taking it, but that there was a 40-60% chance they would reoccur as the steroid was weaned. Unfortunately this is what has happened. She took a full dosage of the meds for two weeks and we saw a nice 10 days seizure free. We saw Dr. Sharp, our neurologist and had an EEG during this two week period. Her EEG at the time looked "pretty good" to quote the doctor. It was not a normal EEG reading, but he basically said it looked as good as it could without being normal. He said there was no sign of the spasms effecting her brain waves at all. That was WONDERFUL news. She was only showing a few spikes on her occipital lobe during sleep which several other MEB parents have told me is similar for their children. Those spikes are very minor and do not require any extra help. Also despite these happening during sleep he said her sleep waves look great otherwise and she has been sleeping very well of late which we are thankful for.<br />
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The main issue with this good EEG reading was it's possibility of being a temporary thing. We were told at that appointment that we would wean the steroid down for five weeks and then go back for another EEG to see how things looked without the steroid in her system (in case you are wondering, she cannot stay on the steroid permanently because it's not good for anyone to do so). So this past Saturday was the last dose of steroids that she would take. As we've weaned the steroid we have gradually seen the spasms become a bit more frequent again. There does not seem to be a pattern to when they occur. We've seen them five days apart, then two days apart, then three days, etc., and now it's been seven days seizure free again. We're very happy to not see them so often, but obviously we want them gone for good. Unfortunately Dr. Sharp did tell us it is possible we will never get them under control completely. But he did say as long as they stay infrequent and her EEG continues to look good like the last one then we can be happy. Obviously it would be best for everything to be normal, but this would be the next best thing. So our next step is another EEG and appointment with Dr. Sharp this week to see how things look now that the steroid is totally weaned.<br />
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As for Kinsley's progress in development we continue to see slow, but steady gains for which we are always grateful. One wonderful development in the past month has been Kinsley's first signs of understanding some language! Yea for receptive language progress! About a month ago now Kinsley started to respond to the words, "Give me kisses," without any puckering from us as a clue. She just leans right in and lays one on you. Sometimes it's closed mouth, sometimes open and even occasionally with a bit of tongue. Obviously, we're not fans of the tongue kisses, but we just make sure to keep our mouths closed! Now she doesn't do it every single time we ask, but she has done it sooooo many times now that there can be no doubt that she understands it! :) Then a couple weeks later she seemed to begin to understand when we say, "Yea, Kinsley! Yea!" She's been working on clapping for a few months now and has been able to randomly do it since about February, but only when she felt like it. So whenever she did it I would always say, "Yea, Kinsley! Yea!" And we would clap along with her. So suddenly she started to get it. We would be working on a skill for therapy and when she would complete the skill I would say, "Yea, Kinsley," and start clapping and a few weeks ago she began to copy me with the clapping which was very exciting to see. So then I would just be holding her and I'd say it again and she now will (sometimes) clap just hearing us say it! I know this may not sound like much to some, but for us it's wonderful to see the beginnings of her understanding us!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimmQbPOt0rS6iLeNZsrMP78P7l-i0su52Q8bnPay1Osd_Bx4BpkIEgcqidi0tND_kfqd48Xbi8H4js_oN0LrZ4ZFKdJ3-B3kP0d6VJ6-E-puBbeTXMG_a7sClPIkASTSNAd6v8AKzEIE-x/s1600/IMG_1861+1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimmQbPOt0rS6iLeNZsrMP78P7l-i0su52Q8bnPay1Osd_Bx4BpkIEgcqidi0tND_kfqd48Xbi8H4js_oN0LrZ4ZFKdJ3-B3kP0d6VJ6-E-puBbeTXMG_a7sClPIkASTSNAd6v8AKzEIE-x/s320/IMG_1861+1.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Clapping girl</td></tr>
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Physically the progress is still slow and we have not reached crawling or walking yet, but she is still getting closer and closer. She can maintain her hands and knees position for longer periods of time and even tries to reach for things while in this position, which is an important step in crawling forward, obviously. She also will rock her body back and forth which is a step before actually moving forward as it helps her body feel the motion of bearing her weight first in the front and then the back over and over. Walking wise she has been using a walker in therapy! She by no means can use it on her own and requires trunk support and for her hands to be held or tied to it (I know that sounds terrible, but they're really just wrapped). As I've mentioned many times before, she hates having her hands manipulated so this is something we're slowly having to accustom her to, but once again she is making progress! She's also making progress towards independent standing. We can hold her around her knees and have her support the rest of her body on her own. The lower we get our hands the closer she gets to independent standing! Please continue to pray for these endeavors for her.<br />
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<tr><td class="tr-caption" style="text-align: center;">First time trying out her walker. :)</td></tr>
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She has also begun pool or aquatic therapy. We've gone twice for about thirty minutes each time and she seems to really enjoy it! She loves to splash with her hands and last time she literally splashed for thirty minutes straight. Her arms must have been sooo tired afterwards. She will also kick her little legs under water and just overall seems like she could be a great little swimmer eventually. For those of you who are wondering why pool therapy helps, it increases the resistance against her muscles, but takes gravity out of the equation, so she doesn't have to work as hard, but gets more benefit to her muscles. :) Yea! We also can work on standing on the steps in the pool and get the same benefits of making it an easier task for her.<br />
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Kinsley has also made great progress in self-feeding. About 80% of the time now she will feed herself finger foods right from her tray or plate! Yes! This is a great skill (and makes meal times easier on mama)! I'm still having to feed her anything that comes from a spoon, but I'm ok with that for now and she's making slow progress towards doing that herself too. She will pick up the spoon very rarely, but will take it from me sometimes and put it in her mouth, so progress. :)<br />
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<tr><td class="tr-caption" style="text-align: center;">Good self feeder! Good as in "feeds herself", not good as in "has good aim". ;)</td></tr>
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In the vision area, we have seen a return of the eye crossing in the past few weeks. This was expected, though we were hoping not. This probably means either another round of botox to try one more time to see if it could help permanently or the other option would be eye muscle surgery. We'll see our eye doctor in July to decide. Kinsley did get her glasses a couple of weeks ago, though and I must say they are ADORABLE! At first I thought she was going to mess with them constantly as she did just that for the first little while, but honestly within one day she seemed used to them and really leaves them alone quite well. We are very pleased by that. As for how much they're helping? It's hard to say. Many, many people have commented that they think she has noticed them much more and has been paying more attention to what is going on around her. It's hard for me to tell. There have been times when I thought not, but then others where it seemed quite clear that she was seeing much further than she had before. So, we hope they're helping. But either way, we know she will always need them, so at least she is getting used to wearing them already and we know as she ages and develops more ability to move they will be more useful for her then.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAQ0a5NrH8eJsWvrKniR19t86uEc1lsWn3pPJV9XsRVNZAXzvqhTApShwdXdhxvpXXFtB0pnVgYOBGK1GO15t6orfP7oXiI-WN8tSR9eQYOdwu5U4o9WpgkHnxCDG5_P_MTSq0Rp1vja34/s1600/IMG_2070+1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiAQ0a5NrH8eJsWvrKniR19t86uEc1lsWn3pPJV9XsRVNZAXzvqhTApShwdXdhxvpXXFtB0pnVgYOBGK1GO15t6orfP7oXiI-WN8tSR9eQYOdwu5U4o9WpgkHnxCDG5_P_MTSq0Rp1vja34/s320/IMG_2070+1.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cutie with glasses</td></tr>
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In the last couple of months our baby girl has grown into a toddler for sure. She looks so much older and her limbs are soooo long. She's a tall girl. :) Her are some pictures lately. (I'm not sure why some of the pictures are squished, but blogger won't let me try to format them. :/ Sorry!)<br />
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We continue to be amazed and feel so blessed by God at how well Kinsley is doing considering all the odds against her. We feel overwhelmed with love and support from all of our family, friends, and all you out there praying for our sweet girl. Thank you all!<br />
1 Corinthians 15:57, "But thanks be to God, who gives us the victory through our Lord Jesus Christ." <br />
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Carolinehttp://www.blogger.com/profile/06814472759057652109noreply@blogger.com7tag:blogger.com,1999:blog-4631485974950872263.post-23921556527910714342013-04-25T13:05:00.000-05:002013-04-26T15:57:43.108-05:00Kupcakes for Kinsley<div style="text-align: justify;">
I need to share with you all about the wonderful support Luke, Kinsley, and I have received throughout this whole process of figuring out and learning about our sweet girl's condition. Obviously, Kinsley requires many visits to doctors, daily therapy sessions, prescription medications, testing, one hospitalization and of course travel to each of these things. Thankfully, we have pretty good insurance which covers quite a bit of this, but of course not all (and obviously it would not cover travel costs). Our trip to the NIH, although free for each appointment, was a somewhat expensive trip when you factor in costs for flights, hotel, car rental, public transportation use (because you do NOT want to drive in and out of D.C.—worst traffic ever), and food, things start to add up. </div>
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In addition to that, right now Luke is the only one working. I loved my years teaching, but since finding out about Kinsley's needs we decided it would be best for her if I stay home and focus on helping her and teaching her to become as successful in every way as is possible. I love this new job too. However, being down one less salary does make things a bit more tight.</div>
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So, I say all of that to say many, many people including family and friends have been so very generous to us despite our insistence that all we ask for is prayers and encouragement. The most overwhelming generosity of all has come from our church family. When they found out about our trip to the NIH they did a special collection for money to help with our travel expenses. We only allowed it because they asked and we appreciated their desire to help very much. We did not however expect the $1400 they raised from the congregation in one week! We were somewhat overwhelmed. But that was just the beginning. The day after we returned from our trip we got to experience “Kupcakes for Kinsley.” This sweet, sweet event was the idea of one of our dear elders' wives. Unbeknownst to us they invited everyone in the congregation to bake their favorite or cutest cupcakes and bring them to an auction. At the auction everyone from the congregation bid on each others' cupcakes and raised over $2000 more for us! Below are some pictures of the fabulous cupcakes.</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNThrvJjeKvruZQn575sJ00Dpl-nzS9vrLAYAtveDKkiLCedvf5jt5EKFtAGeSGddUBAGtii_9tz4EZzFfTMyvnZTinpla7o1jcCP3tjiAolgmhyoVz8PrL-RmEL_RxpbWAC0_IsUo67sc/s1600/IMG_1765.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjNThrvJjeKvruZQn575sJ00Dpl-nzS9vrLAYAtveDKkiLCedvf5jt5EKFtAGeSGddUBAGtii_9tz4EZzFfTMyvnZTinpla7o1jcCP3tjiAolgmhyoVz8PrL-RmEL_RxpbWAC0_IsUo67sc/s320/IMG_1765.JPG" width="320" /></a></div>
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But, the giving did not stop there and has not stopped yet! A very kind lady from church who bakes cakes and such professionally took the “Kupcakes for Kinsley” idea and added more. She pledged to sell cupcakes for three weekends in a row and give us all the proceeds. Last night at church she said she's had 80 orders so far! I've tried to tell her it's too much, but she (and everyone) insists that it's not and that they just love Kinsley and us and want to help. And since we've been back we have continuously had people at church bring us more and more saying, "I didn't get to help earlier," or even, "I had some cupcakes and someone asked what they were for and then wanted to donate." Seriously, strangers have given money to church members to give to us. Did I mention that the generosity has been overwhelming?!</div>
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Suffice it to say the money raised has far more than covered our traveling expenses, so our plan is to open an account to save all the leftover money and all that seems to keep rolling in. I should mention that our church family is by no means the only people who've shown us such generosity. We've had many friends and family send gifts and money along this journey and this post is to thank you all. You are appreciated! We will use this to continue to see our wonderful new doctors in Bethesda once a year and to help fund our many trips to Little Rock each year to see our neurologist and (soon to be) muscular dystrophy team. </div>
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Now, my last note, this is by no means a plea for money, so if you are not one of the people I've mentioned tonight, please do not feel that you need to be! All we ask for is your continued encouragement and prayers for our sweet girl. :)</div>
Carolinehttp://www.blogger.com/profile/06814472759057652109noreply@blogger.com3tag:blogger.com,1999:blog-4631485974950872263.post-73982910311909433962013-04-16T21:53:00.001-05:002013-04-16T21:53:40.119-05:00A Trip to the National Institute of Health Part II<div class="separator" style="clear: both; text-align: center;">
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For those of you who may have missed Part I of this post, <a href="http://sweetkinsleygirl.blogspot.com/2013/04/a-visit-to-national-institute-of-health.html" target="_blank">here</a> it is. The rest of this post won't make much sense if you haven't read it first.</div>
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So, picking up right where we left off before . . . </div>
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The last major thing we discussed with Dr. Bonnemann was the brain aspect of Kinsley's
disease. We went through her MRI and looked at each brain abnormality.
We first looked at her lissencephaly which is a cobblestone effect caused by malformation of the layers of the brain during development in utero.
Kinsley has this at the back bottom part of her brain on the temporal
lobe. This lobe is what controls vision, so at that point Dr. Bonnemann
suggested that cortical vision impairment was a very real possibility.
Thankfully, only a small portion of Kinsley's temporal lobe is effected
and the rest is formed correctly. Dr. Bonnemann
explained that this is very important because Kinsley's brain should be
able to reroute any use away from the abnormal part and use the
correctly formed part with success to see just fine. This would require
vision therapy to accomplish, but otherwise should be able to be
overcome. Yea! The brain is an amazing organ!</div>
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Next, we looked at her polymicrogyria.
This is a weird word for a thickness in the top layer of Kinsley's
brain. It has more white matter than is normal. This abnormality is only
seen in the frontal lobe of Kinsley's brain. Dr. Bonnemann
said the frontal lobe is not devoted to any specific task, so whatever
goes on there should be able to reroute and work through a different
part of the brain. Once again, wow! Brains, especially of those in
infancy and early childhood, are amazing. One reason for Kinsley's
delays in developing language skills could be explained by this. Right
now it is not developing, but the brain is working to find an area of
the brain it can use to develop these skills. Dr. Bonnemann
said we should not worry that Kinsley will develop receptive language
skills. He said she will, it will just take more time to come. Yea! As
much as I've heard people say that it made it much more real coming from
this man. Why him? I'm not sure, but I finally believe it! We did
discuss the possibility that she may never speak, but he also said most
children develop signs or use communication devices with success. But
he also said speaking is not out of the realm of possibility. They saw
one child recently who did not have MEB, but a different dystroglycanopathy (K's type of CMD) who knows and can speak hundreds of words. And they said he had worse brain abnormalities than Kinsley. So Dr. Bonnemann
said that he will never rule that out for any child. So let's keep
praying, praying, praying for our sweet girl to learn how to talk!</div>
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The
last abnormality we looked at is something I still don't fully
understand, so I'm sure I'll have a hard time explaining it, but I'll do
my best. On Kinsley's MRI this abnormality looks like a lack of myelination. Myelin
is a coating on the neurons in the brain which helps speedily send
signals from the brain to other parts of the body. We'd been told up
until now that Kinsley doesn't have myelin which would cause Kinsley to have each action she takes/makes be very slooooooow. However, Dr. Bonnemann informed us that this is not actually the case with Kinsley. She does have myelin,
but it just appears that she doesn't on the MRI. He said the other
neurologists and radiologists who said this would have no reason to
think otherwise, but he knows differently because this is the main issue
caused by Kinsley's MEB. This is where I get hazy. So, the gene that gave Kinsley MEB
is called POMGNT1. On this gene she has two different mutations (one
from me and one from Luke - we each only have one mutation which makes
us carriers, but doesn't give us the condition). The problem with the
mutations is that it causes a disconnection between a part of the gene
and a protein. This disconnection is what causes all of the problems
with the muscles, eyes and brain. Specifically with this third brain abnormalitity it gives the appearance of lack of myelination, but really the myelin
is there, but there's a strange watery substance and the lack of the
protein causes this. That's all I really understand about it at this
point. But, I do know that this lack of a protein causes disconnections
for understanding for Kinsley. So it seems to be the biggest problem.
Dr. Bonnemann did say to expect some developmental disabilities
associated with all of this, but the degree to which they will go will
all depend on her therapies and how well she responds to them. He said
we seem to be doing all that we can there and that we should keep it up. </div>
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He did say it would be very important to get Kinsley's infantile spasms
completely under control (as we know) in order to stop it from causing
worse development (unfortunately at this point she is still having one
cluster of spasms every four days or so). So he was making contact with
other neurologists to see if they know of the best treatment of
infantile spasms for kids with a dystroglycanopathy.</div>
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So the last thing I will tell you is the best news we received of all. Dr. Bonnemann
told us about research he is involved in in developing a treatment
through gene therapy. He told us it is a very real possibility that
within three to four years there may be a treatment available that could
help with her brain and muscle issues!!! They are currently looking at
skin cells of children with the dystroglycanopathies
to see how the protein disconnection I mentioned earlier works. They
are comparing it to normal genes and working out a way to get that
normal gene into a vector which they can give to kids like Kinsley. I'm
not going to pretend to understand all of that, but all I know is there
may be a treatment soon! Wow! We were not expecting to hear that at all
and were totally unaware of this possibility, so we are very excited to
say the least. PLEASE be praying for this treatment to develop quickly,
to work and for the doctors and researchers working on it to be wise in
their endeavors.</div>
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Our last appointment at the NIH took
place the next day with the ophthalmology department. We met with a very
kind doctor who complimented Kinsley and worked very hard to entertain
her. Luke and I thought he was quite adorable singing The Wheels on the
Bus with an accent and not the best singing voice, but very animatedly.
He thought Kinsley's eye alignment looks great and said she is using her
eyes together very well right now. He did mention (as we already knew)
that the Botox
injections would probably only work temporarily, but we still have hope
that it will be permanent. He also dilated her eyes and checked them
for us. He informed us that Kinsley's eyes now look myopic and that she
is indeed nearsighted. She needs glasses. This was not a surprise and
we're actually happy and hopeful that glasses with help her with further
development. It is likely that her eyes will continue to get worse over
time, but we won't know how much until it happens. He said she
shouldn't become blind, but the more nearsighted the person becomes the
more problems can occur. But, for now that's not an issue, so we're not
going to worry over it until it is. </div>
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After all of our
appointments were done, we decided to stay an extra day to enjoy
Washington D.C. We toured around some of the memorials including the
Lincoln and Jefferson Memorials and got to see the BEAUTIFUL cherry
blossoms in full bloom! We also visited the Museum of Natural History
and the National Gallery of Art. Lastly, we got to see our Braves
overtake the Nationals in a 10-inning, come-from-behind win! A wonderful,
anonymous friend purchased tickets for us and got us amazing seats! It
was a wonderful way to end our trip. We flew home the next day and we
are glad to be back!</div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXktlMDAit6rCQ5biVdfjOuC174BUviVbFw3_w1AmMv1T_BeFlpkOZDMZ5CocbI7zdmciSIMwP-H2SYyyuywpxtOrWqHjkaxmsUBq6vjZkF4W018Hqj72A0-sYCyQoW9YFUxGIKsreZMvQ/s1600/IMG_4504.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXktlMDAit6rCQ5biVdfjOuC174BUviVbFw3_w1AmMv1T_BeFlpkOZDMZ5CocbI7zdmciSIMwP-H2SYyyuywpxtOrWqHjkaxmsUBq6vjZkF4W018Hqj72A0-sYCyQoW9YFUxGIKsreZMvQ/s320/IMG_4504.JPG" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lincoln Memorial</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiU_BuXl-zCmFtmUbFrN7f_8kn0tmvpvwZKAraWxT4nPZX820ZACs6J0BxLmp_ARc17q25vyIlgDaOZ9mE31pqSXxJ0haq29nqO-siEd9V836JEsX_VQUE8KQKE8_cz64YRRL6rdn0i_VZt/s1600/IMG_4569.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiU_BuXl-zCmFtmUbFrN7f_8kn0tmvpvwZKAraWxT4nPZX820ZACs6J0BxLmp_ARc17q25vyIlgDaOZ9mE31pqSXxJ0haq29nqO-siEd9V836JEsX_VQUE8KQKE8_cz64YRRL6rdn0i_VZt/s320/IMG_4569.JPG" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jefferson Memorial</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3lKRvn4YVWeC9bpIdJDPFJeylYmTscYV-jlehS35LICqrFHXog6k0tyL4alG3zEjwi6_WgUzq1zBz6uYQ1OXQ5lI8Vbqu-h4URvRHA_PCO6ontnOqMU7b5MUCK_o3zDrxnsJanwDL2WDf/s1600/IMG_4631.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3lKRvn4YVWeC9bpIdJDPFJeylYmTscYV-jlehS35LICqrFHXog6k0tyL4alG3zEjwi6_WgUzq1zBz6uYQ1OXQ5lI8Vbqu-h4URvRHA_PCO6ontnOqMU7b5MUCK_o3zDrxnsJanwDL2WDf/s320/IMG_4631.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Enjoying the cherry blossoms</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHAKwKXk6vTCp1vDJe75RzZsGjPJe66seKqMJF-sekbZT1BXE-LXCDDvHxN4UwgoBG0GOZL3F2ZEmChnpI8GfPeRYPdV20fA7c-KxVD_zMCe3GLW4d5gxssxfxCzAS9hURPT9m_1G9ih6A/s1600/IMG_4646.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHAKwKXk6vTCp1vDJe75RzZsGjPJe66seKqMJF-sekbZT1BXE-LXCDDvHxN4UwgoBG0GOZL3F2ZEmChnpI8GfPeRYPdV20fA7c-KxVD_zMCe3GLW4d5gxssxfxCzAS9hURPT9m_1G9ih6A/s320/IMG_4646.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Beautiful shot of the Jefferson Memorial with cherry blossoms taken by Luke</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtl04QDc1pC8Iq-_5PpCdoX-75OWJi0q1iozefC6cJ5tFA1ZR2DMI_qFg0rxPw6HBV15xuC5O9Oep9HgF7gBDdAdNg0Kz6C8aRXgLV8Zwa7WcXua3ZCADJYGIcMZCLERV3xyHAw7I29snZ/s1600/IMG_4660.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtl04QDc1pC8Iq-_5PpCdoX-75OWJi0q1iozefC6cJ5tFA1ZR2DMI_qFg0rxPw6HBV15xuC5O9Oep9HgF7gBDdAdNg0Kz6C8aRXgLV8Zwa7WcXua3ZCADJYGIcMZCLERV3xyHAw7I29snZ/s320/IMG_4660.JPG" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Silly girl was loving the wind in her face</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj75TuMz5bbK2Y4c2NRMprFeQT0C_52C3alNDmmyKxJL8IUW7DmB6Q05lu0hREh5eir1GDTO3Kae8tIRkg_QljUPuBfzfqNMp_4DiNewqoykkxQhMmvbciewg-OSjvHm5d3BwlIs2eNNYz0/s1600/IMG_1755.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj75TuMz5bbK2Y4c2NRMprFeQT0C_52C3alNDmmyKxJL8IUW7DmB6Q05lu0hREh5eir1GDTO3Kae8tIRkg_QljUPuBfzfqNMp_4DiNewqoykkxQhMmvbciewg-OSjvHm5d3BwlIs2eNNYz0/s1600/IMG_1755.JPG" height="240" width="320" /></a></td></tr>
<tr align="justify"><td class="tr-caption">Go Braves!</td></tr>
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OK, so I tried to be brief, but apparently that is impossible for me! Sorry! If you are still reading then thank you!
My next post will be coming soon and will detail our amazing church
family's support of us and Kinsley through this whole process.</div>
<br />Carolinehttp://www.blogger.com/profile/06814472759057652109noreply@blogger.com10tag:blogger.com,1999:blog-4631485974950872263.post-36258952072728397212013-04-15T20:59:00.002-05:002013-04-15T21:17:26.684-05:00A Visit to the National Institute of Health, Part I<div style="text-align: justify;">
Well, much has happened since my last post.<br />
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A few months ago I contacted a neurologist, Dr. Carsten Bonnemann, who I had heard about from a few sources as a leader in the field of congenital muscular dystrophy. I had his email address and decided I would contact him to see if he could shed more light on Kinsley's condition of Muscle Eye Brain disease since it is very difficult to get good information on such a rare condition. Amazingly, about five minutes after I emailed him he responded to my email. He said he would be more than happy to give us any information and that he would be interested in seeing Kinsley at the National Institute of Health (NIH) at some point. Luke and I were very interested in that possibility because at that point we still were not sure which condition she had and we'd been told Dr. Bonnemann was an excellent diagnostician of CMD and each of its subtypes. Our back and forth emails led me to emailing with the genetic counselor on his team about setting them up with Kinsley's information. We sent them all of her medical records and MRI including the information we later received about Kinsley's genetic testing.<br />
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The genetic counselor confirmed that Kinsley did indeed have MEB and she spent some time talking on the phone with me about her results, which I appreciated greatly. We were also informed that Dr. Bonnemann's team at the NIH were currently conducting a natural history research into congenital muscular dystrophy. The research study was simply collecting data and information about people with any subtype of CMD. They said they would love for Kinsley to be a part of the study and said if we wished to come that all appointments would be free and it would include a consultation with Dr. Bonnemann where he would answer any questions we had. After discussing it together and being reassured that there would be no experimental treatments or difficult, uncomfortable procedures done, Luke and I decided we would like to take Kinsley. So, about three weeks ago now, they contacted us with a few date options for when we would like to take Kinsley. We settled on April 10-11 and quickly booked a trip.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYbV009wtbP4WbTgTiy-7tCCDFWNGfApIdp8DfawbjTtsXOmhoRPaHiROkNnY4kyzAmkN6TscUShvokb7TSkX_hzbaGLBUhNPlXK5vQs4Xp7mxi60RR6X-VPriNNjIjqVH7X5mPfwKC4cj/s1600/IMG_1714+1.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYbV009wtbP4WbTgTiy-7tCCDFWNGfApIdp8DfawbjTtsXOmhoRPaHiROkNnY4kyzAmkN6TscUShvokb7TSkX_hzbaGLBUhNPlXK5vQs4Xp7mxi60RR6X-VPriNNjIjqVH7X5mPfwKC4cj/s320/IMG_1714+1.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sweet girl in her new stander a week before travel.</td></tr>
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Kinsley was scheduled to have appointments all day on Wednesday and one on Thursday. Therefore we left home on Tuesday and arrived in Washington D.C. that afternoon (I should mention that the NIH is located in Bethesda, Maryland which is basically part of the D.C. area). After fighting rush hour traffic in our rental car we arrived at our hotel that evening, went out to grab some dinner and a few groceries for Kinsley before crashing for the night. It is also worth mentioning that Kinsley was a wonderful flyer. She was great on the plane and we had several people mention how good of a job she did!</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3rKDP3MbCnsz-D8Sn8pLshyphenhyphenycwnxe1NJ422l4aTcckOf1LQsOvdCf5cOPFOm6IEjed7_K2bjCvWoPJsKeh3_CFUhpeG10LLFtg5ZlJTK8aGptbS4J0UxpcVxeMgykZMpSRZA-YRcpZfer/s1600/IMG_1731.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3rKDP3MbCnsz-D8Sn8pLshyphenhyphenycwnxe1NJ422l4aTcckOf1LQsOvdCf5cOPFOm6IEjed7_K2bjCvWoPJsKeh3_CFUhpeG10LLFtg5ZlJTK8aGptbS4J0UxpcVxeMgykZMpSRZA-YRcpZfer/s320/IMG_1731.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Daddy and baby on the plane.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQ6nXkcnAsGXl9tvJROsX8d8mYY85cZCjDLsoglx1hmvdWINLTgEtH-n3IjRCwRMbwT93BA3IHK-0PbNExY6d8-bvMIXLavD78ZWd-aVlJPgnP6qnzTEWKbJTIsAGpg8zUK5fMf6JbDciK/s1600/IMG_1735.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQ6nXkcnAsGXl9tvJROsX8d8mYY85cZCjDLsoglx1hmvdWINLTgEtH-n3IjRCwRMbwT93BA3IHK-0PbNExY6d8-bvMIXLavD78ZWd-aVlJPgnP6qnzTEWKbJTIsAGpg8zUK5fMf6JbDciK/s320/IMG_1735.JPG" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sweet girl in the hotel.</td></tr>
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The next morning we got up early and made our way through morning rush hour traffic to the NIH campus. You have to go through security and have your car checked before you can get on campus. It takes a bit of time, but they give you passes and then you can move on. We went through admissions first (although Kinsley was not being admitted to the hospital. This is just done for each patient who visits the NIH.) Around this time Kinsley began to be a bit fussy. I think she was just getting tired and ready for a nap, but unfortunately she wasn't able to fall asleep because of all we had to do. After admissions we went to the pediatric clinic to fill out more paper work and for Kinsley to get her vitals done (weight, height, blood pressure, etc.). All of this is normal stuff, but because she was tired (and I think feeling strange about unfamiliar surroundings) she screamed and cried through that whole process which was somewhat stressful on her mama and daddy as well. The next step was our appointment with the genetic counselor. She only wanted to go over our family history so they could record it for the research and then answer any genetic-type questions we might have. This should have been easy, but of course, Kinsley was screaming through most of the process. The counselor kept reassuring us that it was fine and not the first time they'd had a tired, upset child around, but I still felt horrible. However, finally, as the appointment was finishing up, she passed out on her daddy's shoulder.</div>
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We had about thirty minutes after that to wait for the next appointment which was with the physical therapy department. Kinsley slept while we waited and during the initial part of the appointment, but we had to wake her up for the PT evaluation. She did OK on the evaluation, but not the best possible, but I very much expected that. She would not show the therapist that she can roll over (this is because she still only does this on occasion during the day, but always at night. She still prefers to play on her back or side at this point and although she doesn't hate tummy anymore she will usually roll right back over to her back once she is on her tummy). She did however do some good sitting and side sitting as well as good assisted standing. They said it seemed like we were doing all that we should at this point, but added that it might help to try some pool therapy in order to build more trunk strength. I already had been wanting to try something like this with Kinsley this summer, so we're talking with our home PT right now about trying to get this set up.</div>
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After a lunch break we headed back to the pediatric clinic to meet with a neuro-muscular doctor. She asked a lot of questions and took down all of Kinsley's history. She did a short examination (checking reflexes, muscle-tone, etc.) and then left to share all of the information with Dr. Bonnemann. After waiting 25 minutes or so (during which time Kinsley began to become tired and fussy again) Dr. Bonnemann and several people from his team came in. During that time he did another short examination of Kinsley (including holding her hands as she walked towards me :) ), answered every question I could think to ask and explained as much to us as possible about everything related to her condition and what expectations we should have. It will be hard for me to repeat everything he told us, so I will give you the highlights.</div>
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First, starting with her muscle condition and strength, he said she does indeed look very strong and healthy right now. Obviously, her low-muscle tone is causing problems, but she is doing a good job of working to overcome it through her therapies. They also did an ultrasound of her leg and arm muscles which showed that her muscles look very good and are not deteriorating at all yet. He said as long as her muscles stay strong then her health should continue to stay strong. If at some point the muscles begin to deteriorate then that is when we would begin to see problems with the lungs and or possibly the heart (though heart problems are less common with Kinsley's type of CMD.) So, for now we are very thankful to hear that her muscles are strong and that we shouldn't have to worry about that at this point. He also explained that with dystroglycanopathies (a very long term for the types of CMD of which MEB and Walker-Warburg are a part) you never know for sure what will happen with the muscles in the future. Every child is different and you don't necessarily see bad deterioration of the muscles ever, although with some you do. We just won't know until it begins to happen, but the good thing is that for now it's not happening and we will continue to pray that it never will (Also, this difference in how much the muscles are effected is what causes the wide range in life expectancy with MEB—early childhood up to 70 years old). </div>
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Next, we discussed the eye portion of the disease. He asked if we thought Kinsley saw better close up or far away and I told him I'd thought she was nearsighted for many months now. Extreme myopia (nearsightedness) is one result of this disease for most children. However, last summer when Kinsley had her eyes checked there was no sign of myopic eyes (apparently ophthalmologists can see this at the back of the eye when the eyes are dilated). We'd been told that since her eyes were healthy it seemed likely that she has cortical vision impairment which is when there is a problem seeing because of brain malfunction rather than eye problems. We discussed this possibility with Dr. Bonnemann and he said it was a very real possibility, but he also wanted us to be sure and have her eyes checked again for myopia. Cataracts and glaucoma are also sometimes seen with MEB, but he said it was very unlikely for Kinsley to develop them from MEB at this point. He said we would have already seen them if they were going to happen, so there is another praise.</div>
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Ok, so this will have to end Part I of the post and you can find out the rest of our visit with Dr. Bonnemann soon. Please come back to read it because there is some good information to come! </div>
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Carolinehttp://www.blogger.com/profile/06814472759057652109noreply@blogger.com4