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



5 comments:

  1. Love our sweet girl! I always keep her in my prayers. Hope everything goes well tomorrow.

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  2. Thanks for requesting specific prayers! Always praying! ♡♡♡

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  4. She is just so cute. Wish we could all meet up. My boys send their love and hugs and you are in our prayers. x

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  5. Praying for your Kinsley and her upcoming tests. And, for you as you make decisions concerning her future. You are wonderful parents to this precious girl and you are an inspiration to us all!

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