Wednesday, February 2, 2011

Cooped Up & Cold

We are still missing sleep. You'd think Chris and I would get used to it. But we truly suffer when Noah's bedtime is 2am and he gets up at 6am. I'm not sure which is worse late nights, or being up every one to two hours. The other night we had an added bonus, his loudest toy in the master bedroom decided to go off because the batteries are trying to die. Nothing like being woke up to a toy cackling at you and lighting up your room like a UFO just landed on the carpet. And of course our little light sleeper heard every second of it and was up immediately. Darn.

Noah has been doing really well in pool therapy, we put a life jacket with a hood on him for the first time. He tolerated it really well, and we were able to give him some more freedom with his vestibular motion in the water. We made the formal decision to take a break from sensory class for a while. We've had discussions about addiing additional types of therapies in its place, but we're just trying to make sure we don't overload Noah. We know that he lacks the speech component to his therapy week. We've been trying to do as much in-home speech as we can, yet to no avail. Noah still has no words. We've had recommendations to enroll Noah in hippotherapy in the fall, something we can't afford either. I'm so frustrated that Medicaid won't help us pay for these things. It's not like they are experimental, they do work. I also was reading up on the benefits of acupunture for the compromised brain, and the help it can often give the nervous system, and we can't try that either. I know there is no cure for brain damage. I'm not looking to "fix" Noah. I know I can't do that. God how I want to. But it's compeletly out of my hands. All I can do is attempt to find ways to improve his life. And it's frustrating not to have access to things that we truly believe would offer Noah the hope of making physical gains.

It's been extremely cold here the last couple of days. I'm thankful that our snow was minimal as I know many other states haven't been that lucky. Due to the temperatures Noah's sensory class was cancelled, and I'm not sure if pool will be possible or not this week. The pool often suffers with temperature problems when it gets really cold outside, even though it's an indoor pool it still has an impact on keep the temperatures as high as usual for him. It's just as well that Noah stays inside, the cold can't be good for breathing, and I'm sure these temperatures will sprout a whole new chain of illnesses that we'll have to watch for. We keep Noah still heavily guarded from germs. We just aren't risking the onset of seizures if we don't have to. We remain so very thankful to family, friends and therapists that warn us when they aren't well so we can keep Noah healthy.

A representative from Noah's equipment vendor has agreed to pick up the Twist pediatric chair that is in my basement non-functional for Noah in the next few weeks. Even if it is modified I know that it's not the right chair for him. I really want to trial the Convaid Cuddlebug, yet I'm told that there is no way to do that in this state since there isn't a vendor that carries them. So as any persistent mom, I contacted Convaid via email to see if I had any other options to trial their product to see if it is a good match for Noah. Maybe I'll hear back, maybe I won't. But I won't give up on finding the right equipment match for him. There is a reason there are so many products out there because it isn't a one size fits all for special needs bodies. And I'm determined, to find the perfect equipment match for him. He deserves to be comfortable.

Hopefully Noah will want to snuggle for a while today and nap. Another cold day today, which means we'll be cooped up inside again, for the third day in a row. The highlights to our day are washing rugs and scrubbing the kitchen floor since the dogs think it's too cold to take even 30 seconds to piddle outside. I don't blame them really, below zero temperatures I wouldn't want to potty outside either. And Noah seems to like some of their cooped up energy as they bounce around stealing clean socks from my laundry basket and playing tug of war. I think I even seen him smile in one of their directions yesterday and usually he avoids looking or paying the dogs any attention unless he has to. Waiting patiently for spring.


Creative Commons License
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.