Tuesday, May 31, 2011

Katie at 16 months old

Katie is now 16 months old. She was dedicated to the Lord one year ago yesterday! I can still call her our little miracle baby! I had never truly thought of her that way until we were standing on the stage and Pastor Todd Molter said it. But it is the truth! Katie is our beautiful bright wonderful little girl!! Katie is so amazing! Katie is starting to cruise (walk along furniture, etc. while holding on). Katie is more comfortable going to the left than the right. She has issues with shifting her weight. She tends to use her left leg more as a sturdy pivoting point than a useful leg, almost like limping. She can walk holding on to our fingers, but her stride is significantly shorter on the left. So pray for improvement of muscular strength and stride on the left and learning to coordinate both feet together. Also, they have started using Kinesio tape on her left leg to try to encourage her to point her foot and push off as she steps. They might use it on her arm to encourage supination, or in English, turn her hand so the palm can face up. Pray for her left arm, it stiffens up quite significantly when we do not stretch her enough. Pray that we remember to continue to stretch her even when her arm is relaxed and improved and that it stays loose and relaxed more and longer!
Katie's biggest struggle has been drinking. I touched on it last time, but now I am asking for more prayer. Katie is still primarily nursing. We tried to wean, but she is not taking adequate liquid from other sources to stay hydrated. We have talked with her CCS occupational therapist, OT, and I took her to see a Speech and Language Pathologist, SLP, at Kaiser and both are really at a loss for what to do. I have asked some friends that are OTs and SLPs and they are at a loss for what to do. I have been given many suggestions, but so far no improvement. Katie is able and capable of drinking from a cup (open, straw, or sippy) but she has trouble swallowing the liquid once it is in her mouth, so in other words, she sucks it to her mouth, swallows a sip and the rest pours out on her clothes. The therapists thoughts are that it is not a swallowing issue since she can manage her saliva, breastfeeding and all food. The only thought of what it might be is increase desensitivity in her mouth, so she is familiar with breastfeeding, but all other liquid she can't feel properly in her mouth. Or the other debated possibility is oral aversion, where it is a sensory issue and she doesn't like the way it feels (I do not think it is this, since she has absolutely no other sensory issues, but always a possibility). But either way our only thing is to keep trying and stay encouraging. It is very frustrating, not only because she is such a fast learner, but she hasn't 'got' it yet, but it is difficult to spend 10-15 minutes or more repeatedly throughout the day trying to get her to drink and she might get down 1/2 - 2 ounces. (She needs at least 27 ounces a day.) Please continue to pray!! Pray she manages consecutive swallows from a cup!!
Then today I took Katie to see the optometrist at Blind Children's Learning Center, BCLC, they provide Katie's in home vision therapy. It is an amazing school, simple and modest with great resources, wonderful teachers and awesome therapy units. So, I went in hoping for some news of improvement. But I left realizing that we have a long road ahead of us. Katie has a significant amount of visual impairment. She has the nystagmus, (uncontrollable, involuntary eye movement) which makes it difficult for her to focus and retain the image in her sight for an extended period of time. She also has a fair amount of vision loss. Her eyes are healthy, but the stroke caused significant damage along the pathway from eyes to the brain where she processes vision. I told the optometrist that sometimes if I stand 30 feet away she has a hard time finding me. So, it is because it is hard to see that far for her. She has a small prescription of farsightedness, but it is within normal limits of her age range. So, please pray for her vision. Please pray for improvement!! Pray that God continues to repair and reroute the pathways in her brain!! Please pray!! Please Pray!!!
But also thank God!! Thank Him for her sweet determination, for her cognitive abilities, for her desire to move and explore, for her speech and her wonderful cuteness. Thank God that she is visual and CAN see!!!!

I wanted to share some cute tidbits. Katie can say dance and will dance, she will say bounce and bounce. Katie can repeat several words, even her therapist hear it- more, help, open, close, plus many more everyday words. The other day she pooped and was scooting around the house saying, "butt," (we say it is time to change your butt). Then the cutest thing lately is washing her hands. She rubs her hands together and I ask her if she wants to wash her hands, she'll say wash and scoot to the bathroom and pull up on the stool in front of the sink, oh, and don't forget to use the soap, she'll squeal if you try to skip it. Oh, then she has learn where her tongue is. I will have to post a video!! It is too cute!! Thanks for your prayers!! Life is adventure, a journey of peaks and valleys!! I am thankful to be able to share my family's and Katie's journey with you! Keep praying!!