Sweet Kinsley Girl: May 2014

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:

Kinsley Standing Independently!

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

Kinsley walking with a push toy!

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: