Saturday, November 15, 2014

Kinsley's Going to Be a Big Sister! (But it's not what you might think…)

Yes, that's right, folks. Kinsley's getting promoted. Hopefully this will happen within the next year. We would like to officially announce that Luke and I have decided to do an embryo adoption.

What's embyro adoption you might ask? Well, we will be adopting embryos (of an unknown quantity at this point) from a family who has gone through in vitro fertilization, have successfully given birth to children and now have embryos leftover which they do not wish to birth, but also do not want to destroy. They have therefore decided to give their frozen embryos to a family they choose through an adoption agency and forfeit any parental rights and allow their embryos to join a loving home who would like to have them.

Why did we choose adoption? Well, when we found out that we have a one in four chance of any children we have to be born with MEB like Kinsley, we discussed, prayed about and ultimately decided that we would not pursue anymore biological children. I understand that some people may not agree with our decision, but we feel this is right. We believe God blessed us immensely by giving us Kinsely. She is our pride and joy. However I would be lying if I didn't say that every day I wish she did not have to live with this horrible disease. When asked if I could change anything about Kinsley, I have to say that yes I would. I would take away this disease that makes her seize, impairs her vision, stunts her ability to learn, slows her physical progress, stops her ability to speak, and could possibly (but Lord-willing not) weaken her muscles to the point of even death some day. I hate to even say those words, but they are facts about MEB. Does this mean that I think Kinsley is anything less than perfect? Of course not. She is my hero. She works harder than anyone I know to overcome every setback set in front of her. I am so proud to be her mother and I would never, ever go back and not have this sweet girl.

That being said, with this knowledge, Luke and I do not feel that we could bring another biological child into this world knowing we could be subjecting him or her to MEB. It's just not something I would wish on anyone.

We always knew we wanted to adopt some day anyway. This just helped us move in that direction earlier than originally planned.

So, why choose embryo adoption? Well, when we first began thinking about adoption we had never heard of embryo adoption, but a friend of mine (and one of Kinsley's therapists) has worked in the adoption field and mentioned it to me. I was immediately intrigued and researched it quite a bit. With embryo adoption we will be able to implant the embryos into my body and I can carry the child(ren) to term and give birth to them! To say this was exciting to me is an understatement. I LOVED being pregnant and the thought of giving that up was hard for me to do. Also, nursing Kinsley remains one of my favorite life events ever. I am so excited to be able to do these with the children we will adopt as well.

Additionally, as very strong pro-life advocates, Luke and I feel very strongly that these little frozen embryos deserve and need a family. Their lives have begun, but they are literally frozen in time and need someone who is willing to continue their lives to adopt them. We feel very strongly that this is an important issue and one worthy of pursuing. Our hope and prayer is that one day there will no longer be a need for embryo adoption because all these little embryos will have received families and will have a chance at the life that has already been begun.

Embryo adoption is not actually seen legally in the same light as typical domestic or international adoptions, but there are adoption agencies who offer this form of adoption along with the typical types. Their hope is that eventually this will be viewed as a legal form of adoption and will have the same laws applied to it. Therefore they follow all the same guidelines as a domestic adoption and keep track of the paperwork just the same. Because of this we had to complete a home study just like all others adopting. This was just (finally*) completed this week and we have mailed it to our adoption agency. Our next step is the matching phase and I so excited for this phase to begin! It is finally starting to feel real to me. Our family profile is going to be given to the genetic families (as they are called by the agency) and hopefully one will choose us to adopt their embryos. If we choose them back we will receive all of their embryos, and can begin the implantation process! The matching phase takes 3-6 months on average.

We are doing our adoption through Nightlight Christian Adoptions, but there are others who do embryo adoptions as well. Please feel free to read more about it, but also please ask me any other questions you may have. I know with this post I have not given all the information you may be wondering, but I will certainly be telling more as this process continues for us. Most of all we ask for your prayers as we continue on this adoption journey. We will certainly need them!

Family of 3 for a limited time!
*Our home study actually didn't take much longer than 1-2 months to complete. The draft of the document has been finished since the end of July. However, we have been waiting MONTHS for our FBI background check to be processed and completed. SO frustrating, but also fairly typical. If you are going through an adoption I would suggest either sending off your prints at the beginning of your home study process OR use Fieldprint to complete your background check. After waiting 3 months for our prints to be processed I was told my prints couldn't be read and that we would have to redo the whole process. Our social worker told us about Fieldprint. They are a company who will complete your prints electronically and submit them to the FBI electronically as well. They claim to get your results back for you in 3-5 business days. I got mine back in 6 HOURS! It was well worth the money (only a little over double what you pay if you mail them in and wait the 3 months for it to be processed.) Please note however, this company will not work for you if you require an apostille copy of your background check.

Sunday, October 26, 2014

Lately

I figured it was time to update everyone on Kinsley's progress of late. There are several issues which I would like to tell everyone about and request your prayers for.

First, and at the foremost of my mind is Kinsley's ERG tomorrow. Please be in prayer about this if you can be. It is going to occur at noon tomorrow and she will be sedated for this procedure. This is scary for a few reasons, first sedation is always scary, but can be worse for people with muscle diseases. Thankfully, we know from two previous experiences that she has been through sedation just fine with no issues, but it's still a slight concern. Additionally, she has to fast before it and therefore may only have one cup of apple juice tomorrow morning. No food and no other drink. This is something no toddler would tolerate well, but certainly not one with special needs who doesn't understand why she can't eat anything. So, that should be fun. Now, what's an ERG, you ask? It stands for electro-retino-gram and it will be an in depth eye exam for Kinsley. In my last post I mentioned how the ophthalmologist at the NIH suggested we have this done to check for retinal degeneration of Kinsley's retinas. We were supposed to have it done in August, but Kinsley and I both got the stomach bug the weekend before it was scheduled, so it was rescheduled for tomorrow. Please pray we will get good results which show that her retinas are great without any degeneration and also for the issues mentioned above.

The next issue we've been dealing with are Kinsley's seizures. Most of you know we've never fully stopped Kinsley's seizures, but they were not happening often and each EEG showed that her brain waves looked pretty good, with only occasional minor spikes that were not hurting her development. Although we'd prefer that not to happen, it was the best it could be if seizures were going to occur. Unfortunately for the past several months we've seen an increase in the number of and intensity of her seizures. They were happening about once a day. We tried several increases in the medications she was already taking, which would help for a little while, but eventually not so much. So a little over a week ago we added a third seizure medication. The great news is that it seems to be helping so far. Since starting it she's only had two seizures and none since last Tuesday. We're very thankful for that and ask that you pray this will continue to work.

The down side to any seizure medication is the side effects. The main ones we're dealing with this time include behavioral changes, effected sleep and balance issues. With this med, many people are calmer, but it can have the opposite effect. At first it seemed that Kinsley was calmer and happier over all, but as we slowly increased the med to the appropriate dosage, she's been cranky seemingly without cause. We're thinking the medicine is probably the cause. Also, her sleep is somewhat effected. Some nights she's waking in the middle of the night and others she sleeps through, but wakes up an hour or hour and a half earlier than normal for her. The worst side effect is it effects her balance. For a child who already has balance problems, this isn't something we want to see. Her tone is worse which just makes her more wobbly all around while she's trying stand or walk. It's not setting her back too far, but is definitely making her progress in those areas harder to achieve. All of this being said, the side effects should subside as her body adjusts to the medicine. Please pray that happens, but that the medicine will continue to hold back her seizures.

So, how is the walking coming? Since we've started using her walker, Kinsley's walking has improved so much. She's able to use the walker with minor help in direction changes to walk at least 50 feet. We use it often to walk from the car to different buildings we're entering. It's still easier to carry her around and she's not totally the best at avoiding people and all objects yet, so once we can find a place to "park" her walker inside we're mostly helping her walk by holding her hands, letting her crawl still or just carrying her. The biggest change since last time I posted is that she has started taking independent steps without her walker or holding anything! Around August she started walking in the shallow end of our neighborhood pool a few steps at a time. Slowly that transferred to on the ground and now she can consistently take 6-10 steps at a time. She still loses her balance often so one time she may take two steps and fall and the next she could take 8 steps. And then go right back to two. It's still a work in progress and like I mentioned above, the new medicine is not helping us with it at all. However, it is her PT's goal and mine as well that she be able to walk across a room all by herself by her 3rd birthday (Dec 20). Will you join me in praying this specific prayer to meet this goal? I know it will be more than possible, with God's help, for us to reach this goal. Here's a video of the progress so far:

video

Speaking of turning 3, Kinsley will soon be losing her wonderful developmental therapist. Carol has been so wonderful for us the past two years and she will remain a great friend, I'm sure, but sadly Kinsley will not be able to see her anymore when she turns 3. Kinsley's developmental therapy is funded through the Early Intervention program which only goes to age 3. After that she enters the world of public education if we wish to continue developmental therapy. So, we have some tough, important decisions coming up. In just over a week we have Kinsley's first IEP meeting. It's a scary thought, but I know it will be so important. As a teacher I sat through many of these meetings with ease, but as a parent I'm somewhat terrified. I, obviously, want what is best for Kinsley educationally. This doesn't mean she even needs to do anything right now, but there is an option for a half day, four days a week pre-school which we are considering. We think some socialization with other kids would be good for Kinsley, but we still aren't sure if she should do this or not. Thankfully, if she does this, she'll still be able to have the private PT, OT and ST she already has and we will not be changing that at all. Anyway, please pray we'll make the right decision.

Ok, I've asked for MANY prayers this post. I apologize, but truly I'm praying about each of these things constantly and I'd love your help as well. It's greatly appreciated. I would love to be praying for you as well. I've recently started writing all of my prayer requests down along with the many friends and family I know with their own requests (I should have been doing this long ago, I know). There is so much hurt and hardship in this world, but I'm so thankful God carries us through it all. One of those ways is when we help each other. So please send me your prayer requests as well. I'll add them to my list and will lift you up in prayer as well. "Bear one another's burdens and so fulfill the law of Christ." Galatians 6:2

Now for some pictures of our sweet girl over the last few months:




Playdate with Aubree

Getting ready to swim with Ellie (this girl loves the pool!)

Splash pad with Cooper

First haircut!

During a recent 8 hour EEG

Still patching 6 hours a day 6 days a week

Standing girl



Thursday, June 12, 2014

2nd Trip to the NIH

Well, we've made our second trip to the National Institute of Health for Kinsley to continue as one of their patients in the natural history study they are conducting on congenital muscular dystrophy. The trip was a few weeks ago and proved to be a good visit with a little bit of new information for us.

First off, I should explain that as a part of this study, Kinsley participates by being examined by the neuromuscular team, physical therapy and ophthalmology. They record her progress with the disease and will continue to do so as long as we want to continue to be a part of the study. The purpose of the study is to gather as much information about her disease and others like it in order to gain possible support/funding to (hopefully) bring about possible clinical trials which could lead to treatments and even a cure to these diseases. We are also extremely thankful to get to participate so the experts like Dr. Bonnemann, who we get to see, can give us as much insight into this rare disease as possible. Also, each appointment is free since it's a part of a research study, so we are very thankful to be a part of it and pray it will be beneficial and truly helpful some day. We only have to pay for the travel and with the generosity of everyone who helped with Kupcakes for Kinsley last year (and from others) we have plenty of money for a few more trips! Thank you again to all who helped with that!

Here's the low down on what we learned this trip. First, Kinsley is progressing VERY well. Compared to what could be happening and what, very sadly, is so often the case with MEB, Kinsley is making so much progress and very quickly. They were very impressed with her gross motor skills and how much she had gained in the last year. Dr. Bonnemann said he has no doubt that she will walk without assistance at some point. Her biggest problem getting there right now is due to balance issues. She is very unbalanced when trying to stand or walk independently. She can stand alone for anywhere from 3-60 seconds at a time, but the longer she does it the more she has to concentrate to remain steady and that wears her down until she falls. He said this is due to her small cerebellum (one of her brain abnormalities), but that with time she will be able to overcome it. Yea! We'll just keep practicing. In the mean time, Kinsley's physical therapist has provided us a walker which she is learning to use like a champ to help her walk without the assistance of a person. We're very excited about this! Here's a video of the first time she tried it out:

video

Ok, back to the NIH news. Other than their pleasure with her progress, we didn't learn much new info from Dr. Bonnemann. We were told to increase her vitamin D intake to help avoid possible osteoporosis which could happen in the future. We also asked about any updates on the possible gene therapy they told us about last year. They were still very hopeful about this, but funding is an issue, so PLEASE be praying more funding will be brought in so they can make progress in this. In order for it to be able to benefit Kinsley, a clinical trial would have to take place while she is still healthy. If she starts to have medical issues stemming from her disease then the gene therapy would not help those issues. So please pray for this. Also, if you find it on your heart to give money towards this please let me know and I can give you information on where best to send your money.*

When we visited with Dr. Zein, the ophthalmologist, we got the most interesting news. Kinsley no longer needs to wear her glasses. Just previous to going to the NIH our local ophthalmologist had suggested the same thing, so we were interested to hear about Dr. Zein would say. Turns out he was right (which we are glad to know). Last year when we went, Kinsley's vision was measured at about -1.25 in one eye and -2.0 in the other. This is somewhat nearsighted and glasses could benefit. However, as MEB goes, children tend to get progressively more and more near-sighted as time goes on. When adding that knowledge to the already near-sighted measure they were getting, glasses seemed like a good idea.

However, at this visit, Kinsley's eyes measured at a -0.65 in each eye. Dr. Zein said in normal circumstances a prescription would never be given out for this. He and our local doctor both said that there is a margin for error when measuring the eyes, so this likely explains why the numbers are better than last year. However, I'm also aware God could have easily helped them out if He wanted to. Either way we're just very thankful that instead of getting worse, as was expected, her eyes either remained the same or got better. We were also told a normal reading for MEB would be something like -4.0 or -5.0. So once again, thank you Lord for your provision in this area!

There is one possible concern with Kinsley's vision. Another concern about the eyes with MEB is possible retinal degeneration as time goes on. This would eventually lead to blindness and there is no cure for it right now. After looking at K's retinas, Dr. Zein said he saw something which could be a sign of retinal degeneration, but could also be nothing. The only way to know for sure is through a more invasive test called an ERG. This is a test she will have to be sedated for, so it will happen in Little Rock in August. Please be in prayer about this for us. Right now we are choosing not to worry because we have no real reason to be worried. We're just giving it to God and trusting that no matter the result of the test, He will provide just as he has all along this journey.

Other than that, we had a nice visit to DC again and got to enjoy some sightseeing, walking in great weather and Kinsley's first carousel ride which she thoroughly enjoyed. Here are a few pictures:


Flying to DC (she was so good!)
Being examined by Dr. Bonnemann (she was not as good!) ;)
Riding the carousel on the National Mall
Sightseeing after learning the glasses were no longer needed!

In other news I wanted to let you know that the behavioral therapist we hired has been so helpful and Kinsley's therapy sessions have been SO MUCH better. She tolerates so much better now and is continuing to make progress. We're so thankful. Thanks to all for prayed about that for us!

Also, here's a newer video of her using the walker at home. Of course she's wearing the same outfit! Enjoy!

video


*One very easy way to help fund the research is by using amazonSmile.com when shopping on amazon. If you sign in to amazonSmile then you can choose a charity or organization to receive a portion of the money you spend on amazon. Very simple. Just choose CureCMD and you will be helping to fund the research every time you shop on amazon! And who doesn't shop on amazon?

Friday, May 2, 2014

"That the works of God may be displayed"

1 As he passed by, he saw a man blind from birth. 2 And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” 3 Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him."          
John 9:1-3
When I read this passage I am so strengthened. I like to change the wording so that it's not about a man born blind, but instead about a little girl born with muscular dystrophy and brain abnormalities and weak eyes who also developed seizures. Nothing she nor we did caused this to happen. Instead, she was brought here so that the works of God might be displayed in her. 

Now, Jesus miraculously healed that man born blind. Has that happened to Kinsley? No. But does that not mean God is not working in her? Absolutely not. He has blessed her body so that it overcomes that muscle weakness and grows stronger daily. He led us to the best therapists and blessed them with the knowledge of how to work with Kinsley in just the way she needs. He has given her brain the ability to learn, problem solve and figure things out. He allows her seizures, but has not allowed them to stop her development instead giving her room to grow and flourish.

So, thank you, Lord! You are to be praised! And thank you, all who love and pray for Kinsley. You are helping so much with every prayer you say. Now, watch and see the works of God displayed in Kinsley:

video
Kinsley Standing Independently!

video
Kinsley cruising! (And this is a couple of months old. She is much faster and steadier now.)

video
Kinsley walking with a push toy!

video
Kinsley walks a few steps with assistance (but only a little)!

Obviously she still has work to do before she walks independently, but we are AMAZED at the progress she has made in the last several months. This time last year Kinsley couldn't even push herself up into sitting! And look where she is now. We're so thankful.

In other areas of development she is progressing as well, her fine motor control is improving, but that is more difficult to show you. She has gained more hand strength, is starting to isolate her fingers more often, she's much closer to using a pincher grasp consistently and her control with putting objects into small slots or spaces is improving greatly.

Her language skills are improving as well. She is now using three signs (inconsistently). She's great with the sign for "eat". She uses "more" very consistently in her swing because swinging is one of her favorite things ever. In other areas she will use "more" when reminded. We are also working on "all done" and she has copied that movement a few times. She understands what it means, but using the sign is not as exciting to her since it often signifies the end of something she likes.

She is also understanding more phrases and words. She's following more directions and showing more and more understanding of what she is supposed to do to complete any task at therapy after only a few reps of being shown how.

We are so thankful.

We, of course, have our struggles as well. We've struggled with many tantrums and fits, usually at therapy, for the past several months. Nearly every therapy session would be full of crying, screaming and little work. It's not fun. Not for Kinsley. Not her therapists. And not for her parents. So, we've recently added a behavioral therapist to our mix to help train me and others in ways to help Kinsley tolerate the activities that she does not want to do (any new, hard or unfamiliar tasks). The behavioral therapist spent some time observing and then this past week we began to work on implementing the plan she is forming for Kinsley. It's early to tell, but I am feeling very confident that this will be a wonderful help to Kinsley and to us. Thankfully, for the past month Kinsley already seemed to be showing some maturity and growth and more ability to tolerate, so that therapy has been much easier for the last few weeks. It's a wonderful reprieve, but I'm prayerful that this behavior plan will be something we can use going forward when harder tasks begin to come again. Please be in prayer about this topic specifically. 

My last request is that you pray for us as we take Kinsley back to the NIH in a couple of weeks. We are excited to show them all the progress she has made and are prayerful and hopeful that we will learn more about the progress being made towards the treatment they told us about last year!

Now enjoy some recent pictures of our sweetie:

She loves to be outside.

Dressed up for church in a beautiful dress (Thank you, Kristin Tomes!).

In the flower girl dress I wore in my Aunt Lisa's wedding.

Loved seeing our cousin, Ellie, recently!

Easter girl