Wednesday, April 13, 2016

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!

Sunday, February 7, 2016

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!

Saturday, January 9, 2016

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.

Tuesday, October 13, 2015

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

Thursday, July 9, 2015

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!


Thursday, June 18, 2015

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.

video


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!!!

Thursday, May 21, 2015

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!