Thanks to everyone who reached out after my last blog post. I know it's hard to reach out and try to say something when there really isn't anything to say - so I appreciate all of the love.
Tomorrow we are looking forward to going to Physical Therapy....said no special needs mom....ever :)
Alex is being serial casted tomorrow. That means that both of her legs are going to be in casts from her hips to her ankles. For three weeks. It's been a bit of a challenge trying to find 'accessories' for her wheel chair to support and elevate her legs - so a big, huge thank you to Shannon for getting her all straight. Between the genetic testing and this hanging over my head I am so ready to have tomorrow over with and get on with the next few weeks!
Basically, Alex's knees are at a negative 21 for range of motion. You and I are at a zero. She stands with her legs completely bent....ALL THE TIME. She had been doing so well in her walker, but she can't take purposeful steps - or even help support herself the way her knees are. Tonight I was carrying her in from the car and I came up the ramp to open the door and I tried to stand her up so I could open the door and she fell right down. It's becoming a bigger and bigger, not to mention safety issue. So tomorrow she will be stretched and her legs will be casted. Next week we will go back, the casts will be cut off, she will be stretched again and recasted and the following week the casts will be cut off again, she will be stretched even further and then she will be recasted.
It's not the best picture - but you can see how bent her knees stay. I blogged here about how her knees still stay bent even with knee immobilizers on and how terribly flat footed she is. Her feet completely pronate and it's looks so uncomfortable.
And I've noticed a lot lately that anytime she is not sitting in her wheel chair with her legs secured to her foot plates that she constantly sits with her knees up.
(Sorry for the mis-matched pj's...that's just how we roll sometimes!!!)
And the other thing I noticed is that she is holding on to her feet a lot - so she pulls her knees up even tighter. She'll sit like this for an hour.
I feel TERRIBLE for her knowing what's coming. She loves to sit like that - even when she sleeps she always has her knees drawn up.
Here are my major concerns. I'm really worried most about the extra weight. Alex is 63 pounds of dead weight as it is - now we're looking at another 15 pounds of cast weight. Carrying her is now going to be a two person job. Period - so logistically it's going to be a challenge - and not one I'm sure is going to always work out in our favor. Another huge concern is her seizures and if she convulses - clearly her safety is an issue and we need to make sure she doesn't hurt herself or pull anything if she goes into a seizure. Then there's the skin breakdown concern - being casted from your hip to your ankle leaves a lot of areas for breakdown. Being casted also means no water - so she wont be able to go in the shower, or to the pool for the next three weeks - and SHE LOVES the water. The plan right now is to have her downstairs from the time she wakes up in the morning until bed time. Getting her up and down the stairs scares me so we're going to have set up camp downstairs. Nap time will be challenging - she loves to lay in her bed and watch her DVD's, so I have a portable DVD player ready for her. We are having another reclining wheel chair delivered to try and keep her more comfortable. She needs to be upright in a supported position to be able to eat so she doesn't choke. Her current feeding chair doesn't have the leg supports she will need. We have an extra IV pole as well so we can give her tube feedings and flushes downstairs without a problem. She'll be in the house for the next three weeks, other than going to Children's Hospital each week for the recasting, so it's going to be fun and interesting trying to make her comfortable and keep her occupied so she doesn't get too stir-crazy. I hate that she's going to be missing three weeks of pool time. It's her favorite. And Zach's birthday party is in two weeks - it's a pool party and she's going to have to miss it. That's just a whole other post in itself.
I'll post pictures of what she looks like tomorrow. Say a prayer for us! And if you're in the neighborhood, come on by and sign her casts! :)
1 comment:
Prayers and LOTS of love to all! Ellen
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