Seizures, Seizures Go Away, (Don't) Come Again Another Day

Hello 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.

But, we need your prayers, and I'm finally ready to talk about what's been going on with Kinsley.

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.

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.

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.

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 atonic seizures 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 ketogenic diet was suggested.

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.

This increase in seizures again, caused us to go back to trying new medications. She tried one which was no help.

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).

So, our newest path to hopefully controlling Kinsley's seizures is a surgery to implant a device called a vagus nerve stimulator (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.

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.

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.

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.

28 

Have you not known? Have you not heard?

The Lord is the everlasting God,

    the Creator of the ends of the earth.

He does not faint or grow weary;

    his understanding is unsearchable.

29 

He gives power to the faint,

    and to him who has no might he increases strength.

30 

Even youths shall faint and be weary,

    and young men shall fall exhausted;

31 

but they who wait for the Lord shall renew their strength;

    they shall mount up with wings like eagles;

they shall run and not be weary;

    they shall walk and not faint.

- Isaiah 40:28-31

A rare smile from Kinsley during this time, but even here you can see bruising on her forehead from her seizures.

My sweet babies

Some Prayer Requests

Some 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.

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.

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.

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.

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.

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.

So, please pray for this process to go well, for Kinsley to show her abilities well on Friday, and for wise decisions all around.

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.

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.

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!

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!

P.S. Snowflake Baby Boy is doing great too!

Snowflake 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!

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.

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.)

Our two snowflakes on the day of the transfer.

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.

I took this picture on the day we found out.
Kinsley is officially a Big Sister!

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.

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.

First photo of Baby! Hard to see, but the top blue hatch is the top
of the head and the bottom hatch is the bottom of the rump.

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!

Baby has grown! The head is facing down on the right and a little
foot is on the left. And you can see the placenta below Baby.

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.

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!

So this is a picture of pictures. Sorry for the bad
quality, but you can see how big Baby is now!

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!

Kinsley is 4!

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.

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:

Relaxing with Uncle Jared
(they have December birthdays and celebrate together!)

Cake is good!

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!

• 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.
  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!
  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.

• 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!
  
• 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!
• 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!
• 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!
• 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.
• 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.
• Kinsley can scribble! It's not her favorite thing to do, but she can do it!
• 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!
  
• 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.
• 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!
• 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.)
• 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. :)
• 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 Dinosaur Vs. Santa by Bob Shea, Time to Sleep Sheep the Sheep by Mo Willems or But No Elephants (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.

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!

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.

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!

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.

Snowflakes in Heaven

I 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.

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).

So, I'm no longer pregnant. I'm heartbroken. I don't understand and I never will.

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.

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.

Please pray for us as we wait for the opportunity to move forward with another transfer and for our broken hearts too.

Blessed be Your name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name

And blessed be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be Your name

When the sun's shining down on me
When the world's all as it should be
Blessed be Your name

Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name

Every blessing You pour out
I'll turn back to praise
And when the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Oh, blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

You give and take away
You give and take away
My heart will choose to say, Lord
Blessed be Your name, Lord

You give and take away
You give and take away
My heart will choose to say, Lord
Blessed be Your name

You give and take away
You give and take away
My heart will choose to say, Lord

Blessed be Your name

Embryo Adoption Moving Forward

Well, 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!

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.

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.

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.

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:

"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."  - John 14:27

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!

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!

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.

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!

SHE'S WALKING!!!

Praise God from whom all blessings flow!

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.

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.

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!

So, some notes about the videos:

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!

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!

3) These are the best videos I have ever seen in my life! I am so proud of this little girl.

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!!!

Sweet Summertime with Sweet Kinsley

As 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.

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.

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.):

• 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.
• 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.)
• 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.
• 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.
• 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.
• 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!
• 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 Cat the Cat 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 Cat the Cat books right now, but more will be purchased!

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!

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.

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.

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!

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!

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!

A 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.

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 here 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.

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.

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.

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.)

Please pray for us through it all and specifically that my medication is doing what it's supposed to. Thank you!

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. :)

The Best Laid Plans

The heart of man plans his way, but the Lord establishes his steps. -Proverbs 16:19

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.

You're probably wondering what I'm talking about right now. Let me explain.

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!

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.

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 here.

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.

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.

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.

The Waiting Game and A Fundraising Update

Well, 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.

Sadness, frustration and impatience. Those are all of my initial reactions to this circumstance.

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.

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.

I found the perfect quote to help me through this situation:

“The times we find ourselves having to wait on others may be the perfect opportunities to train ourselves to wait on the Lord.” ~ Joni Eareckson Tada

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.

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.

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!

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.

Additionally, we have set up a website through Prue Charity 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 this link 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 this link 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!

And, lastly, here are some Easter pictures of our sweet Kinsley girl to give you a smile!

Fundraising and a Kinsley Update

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!!!

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!).

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!

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 this link.

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!

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!

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.

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.

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.

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.

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.

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. :)

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!

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!

Working hard during OT

Having fun during a Granny D visit

Sweet Kinsley Girl