Yesterday our OT and her assistant came to the house and met with us and an assistive technology professional to "try" some different equipment with Andrew. For now we are trying this wheelchair. We needed something to hold him upright and also something he could not get out of. We call him our Houdini and it has been difficult to manage him for months. Actually we have not seen smiles like this in over a year. We see a child psychiatrist whom we have trusted and respected. She finally has him on a med that he sleeps most nites all the way. We have tried many meds to find something that would help his non sleep issues and also regulate his moods to a more peaceful or happy state. Today we had the best day ever with him. At first he hated it but we knew we could get him used to it. I think we all are amazed at what a great day he did have. I love his smile in the top picture. He was sitting with the rest of the kids "participating " in their exercise video - having a blast .
He would sit in his chair for 45 minutes to an hour very content. Tonite was the first time he sat beside us at the table while we ate dinner. He did all of his exercising , sensory stuff in such a great mood.... and the best part we have been weaning him totally off of all the mood meds. I think seeing him like this today has been so encouraging. He has not been content with any of his favorites like music, being outside for any length of time in a long while. This past year was very hard but , we are beginning to see the light at the end of this tunnel....at least for now. Having special needs children is like this...You go thru periods of fast progress and then a plateau for awhile. I am excited to see the changes in the next few months....maybe potty training :)
4 comments:
Love seeing the smiles. You are so right about our kiddos. They can plateau for awhile and then suddenly we'll see progress. Right now, it is our Jon with his speech. For years we had very few words. I don't know when it started, but I suddenly realized he now has more than 100 words that he uses in a meaningful way. Unfortunately, sometimes we also see regression after the plateau. That is what we are seeing with our daughter. That is expected when kids with muscular dystrophy get to their teens, but still hard to see.
Glad Andrew is happy! :)
Wonderful news. :) He is precious and SO ARE YOU! :)
Wonderful! Love that first pic! =)
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