Today we went to see Oksana's OT, PT, Physiatrist, and a seating and mobility company all in one 2 hour appointment. They were shocked. They haven't seen Oksana since summer, right before she went to residential. She was regressing then. The reason that I took her to them was that I was very concerned about regression. At the time she was still walking but not as well and many skills were becoming a major ordeal. They evaluated her and like everyone else they thought it might have been behavioral. When they saw her this time there was no doubt this wasn't behavior. I've seen this happen little by little over time. I knew it was bad but seeing it through their eyes was like being hit over the head with a brick. Today I ordered a wheelchair and stander for my daughter who was almost completely independent a year ago. Today we talked about modifying our van. Tomorrow we are meeting with Regional Center and Crider to talk about funding her adaptive equipment and her personal care assistant so we can bring her home. Tuesday the seating and mobility company is coming out to evaluate our bathroom so we can adapt it. Let's remember that maybe a bit more than a year ago she was walking 10 minutes on a treadmill, going up and down stairs, and lifting 35 lbs with her legs in therapy.
Here is a picture I took today when she was trying out the stander. It's kind of cool because it can go from sitting to standing and anywhere in between. In this picture she is at about a 45 degree angle and they are thinking this is where they want her eating now. She can't hold up her upper body and this was an instance where she lifted her head to see the OT but mostly she can't hold it up anymore for any period of time. Mostly I am just shocked by this picture. When I took it I cried. It doesn't even look like her.
Everything in me wanted to bring her home. She needs to be with her family, but I know we can't yet. We need to be ready for her. A personal care assistant will be absolutely necessary. In our meeting tomorrow we will be discussing all of this. I have no idea how I am going to wait for those genetics results. It's torture.
9 comments:
Oh my gosh. This little girl has been through more in her short life than most of us can possibly imagine. My heart goes out to you all xx
I don't even have words, Erin. Praying and loving you all.
Oh Erin! This photo made me cry. Praying for your heart, my friend.
She does look so different and weak. Sending prayers.
How sad...
Wow. Erin, my heart is breaking just looking at this photo. You're right, it doesn't even really seem like Oksana. My prayers are with all of you!
I'm sure you've been through this, but the change is so dramatic it makes me wonder. Are the doctors absolutely sure that the psych meds aren't contributing to some of the changes in Oksana? Like you, I have no doubt that there is something genetic going on. Just wondering if the meds aren't also contributing to the rapid decline. Praying for quick answers for all of you. I can't even imagine how heart wrenching this must be to witness. God bless you.
Happymama - this is the exact question I asked the geneticist! This is kind of the reasoning I had been giving all along. She said no. Believe me...I don't think they are making the situation better. Having said that, she has been on these meds for a good long time and this has been a slow decline (I've seen it happening for a solid year if not more). Meds wouldn't account for regression like that. It's complicated. Still, it is something I've considered and am still pondering.
I have no words....it IS shocking indeed.
Samara
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