Monday, October 14, 2013

PROGRESS with a capital P-R-O-G-R-E-S-S

Well, the past 2 and a half months have brought some wonderful things to Kinsley's life (and therefore ours). Kinsley has made some wonderful strides in her physical abilities and I am so excited about them! In my last post I told how she had learned to push herself into sitting and had done it a couple of times. I am proud to say she has continued to do so and it is no big deal for her at all anymore. It seems that this process being done over and over by her has been a huge help for her. It has strengthened her arms, but also her core and she now is able to get herself up on her hands and knees and can CRAWL forward! Ok, so she only goes about a foot or two before laying down, but it is still AMAZING progress for her. There were definitely times where I wondered if she would get this, but we see it happening! It's wonderful to see her so motivated to move. She does still fatigue easily and this is partly why she doesn't go far, but also it's still an uncoordinated move for her and she's still figuring out the whole reciprocal process of moving one arm and the opposite leg at the same time. Usually at this point she moves one limb at a time, but it's improving and she does very, very well with assisted crawling now (where we hold her legs and move them as she moves her arms forward). Anyway, we're so thankful to the Lord for this ability that she is developing. Her PT told me she believes by Christmas we can have her crawling all over and getting into everything! What a wonderful Christmas gift that will be. I have been waiting so long to see this sweet girl with some mobility and it is SUCH a blessing that it is (nearly) here.

In other progress she has also made great gains in her standing abilities. She has stood unassisted for 10 seconds! That is her max right now, but we've had several other 5-9 second bouts as well. She received some new braces to wear while she is working on standing. They help keep her feet stable as she seems to have weak ankles and she was standing on both the inside and outsides of her feet at different times (very wobbly feet). So, we got some AFOs and the first time she tried them was the first time she stood unassisted for any time at all. They are a great help to her and it's so exciting to watch her make this progress! She's also done some very long 30 second stretches with support only on her feet (she supports her whole body except for her feet which we hold down for her - this is the hardest assisted standing there is). It's awesome to see her doing so well! She is still very weak in her core and this makes it difficult for her to balance, but she is doing so much better than before. PTL!

Kinsley has also begun to use her spoon to help feed herself. She is so cute doing it too. I always make a big deal when she does the whole process of picking up her spoon, putting it in her mouth, getting the food off and then returning it to the bowl. She loves that and acts so pleased with herself. It's wonderful in two ways. First that she's making progress with self feeding and second that she is enjoying and understanding praise from others. She does not scoop the food herself yet and her grip can be iffy (sometimes the spoon gets turned over), but still this is big stuff for her and she keeps getting better at it. :)

That being said I still dearly wish for all of your prayers for our sweet girl and for our whole family. Kinsley is doing so well in her progress, but she will forever be behind. I know this, but I struggle to accept it. It's very hard as a mama to watch your child struggle and be "different" from other children her age. One thing that is starting to show itself more and more are some symptoms of autism. We were told this happens with some children with MEB (because of the brain issues). Kinsley is VERY delayed in receptive language skills and her social skills as well. It is difficult to understand. She can sometimes be very involved and engaged with me or Luke or her grandparents, etc, but very often she seems to be in her own world as well. I think for me this is the hardest part of this whole disease. I just want her to have a happy life, but I want that happy life to include us bringing her that happiness. I just want the very best for her, so I feel strongly about getting her all the therapy and help she can receive. Her developmental therapist and I are working on new ideas and skills to help her with these areas. Her speech therapist is too. And it all helps, for which I am thankful, but it is also very hard. It feels like a constant battle to get her attention at times, but at other times she does great. I try to focus on the positive, but I'd love prayers for this to get easier or at least for there to be noticeable progress in these areas. We're also trying to decide what further therapies (like ABA) may be appropriate for Kinsley in the near future, so please pray for us to have wisdom to make the right choices for our sweet girl. For we know that "the prayer of a righteous man is powerful and effective" (James 5:16b).

I think this is all I will post for now, but I'll leave you with some fall pictures of our Kinsley girl (and her crawling progress!)