Thursday, September 13, 2012

Land of Disappointment

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As I had predicted Noah's exchange on his demo Freedom Concepts bike will only include standard equipment and nothing that will really be customized for Noah. We were first sold on the idea of a Freedom Concepts bike with the belief that it was a product that offered the most customized options for a child with severe cerebral palsy. That they had the potential to be custom made for each child's particular needs. And while I think that's still possible; the kind of features and customization that Noah would need would exceed more than the $2,500 donated funds between two foundations. They won't fund things like a raised pummel seat so Noah doesn't slide/arch forwards, a Neoprene Hip Stabilizer because we are significantly worried about movement in his hips, sheep covers or sunshades for sensory issues, or even leg braces so that Noah's legs don't turn inwards while pedaling... all of those things would cost thousands more. Chris and I have surrendered to the fact that our original goal and dream for Noah isn't happening as we had hoped and intended for him. Freedom Concepts will exchange Noah's rusted demo bike with another bike on Tuesday with changing a few features to include a closed handlebar, headrest, footplates, and a narrower seat. Will that be enough to make it the right match for Noah? I really don't think so. I'm trying to be optimistic but realistic at the same time. But it is what it is, and it comes down to money like most things do.

This week will be Noah's second week at hippotherapy with a new horse. Dock retired and Chris and I are really sad about it. Strangely we both felt a connection with Dock - a trust - an unspoken caring that we felt from him. We both had trouble bonding with Lightening - Noah's new ride. It wasn't that Lightening really did anything that spooked us as parents, he just rather seemed uninterested and lazy. Dock just gave us a vibe that he knew what he was doing and was going to do the best job possible at helping Noah. Lightening just wanted to nap afterwards rather than really get to know Noah. Although Lightening is about the same height Dock was he's a bit wider so he provides more movement. And although the therapist reports that Noah handled the extra movements well, I still have some reservations about it all that I can't quite put my finger on yet. Maybe we'll feel differently this week with Lightening. Maybe we're just missing Dock too much. It's hard when you find what you feel is a perfect match and things change.

Still no progress on our Mygo Lecky Feeder/Activity Seat with hi/lo base. That's a huge thing for us right now something we really need and something we're very frustrated about. And there is no way I could find a foundation able to help with that kind of a cost; no way I could fundraise enough, no way we could fund it out of pocket. I'll wake up in the middle of the night and stew about it all. My mind wanders to what haven't I thought of or tried; a shed a pint of tears into my pillow trying not to wake up the household. I hate it when my hands feel tied. I keep trying to think of ways to get around these constant roadblocks with little success. But Noah depends on me to come through for him - so I carry on each day trying to find ways around all these continuing obstacles.

Noah has started to apply a lot of pressure his index finger with his thumb causing self-injury. So I spent six hours researching inexpensive thumb splints I could afford. $18 for each hand was the cheapest I could find. Hopefully they will help. It's the best I could do under the circumstances.

Noah's feet are still too small for winter Piedro shoes that are the appropriate size for him. There a vendor that is in New York that does custom molded shoes but they are $700 out of pocket. Unbelievable it's not a typo - $700 is the cost. So to say to say the least we can't go that route. I contacted a new orthotic vendor that I'm hoping can offer Noah something for now. My two product choice options are Sure steps and Keeping pace. Keeping pace definitely has a more attractive line and I didn't much care for the sure steps that Noah had previously. His Piedro shoes that we purchased out of pocket were really the best stabilizing shoe. But once again I have to go with a different plan. I really liked a high boot option for Noah but non of them look like they come in a velcro style and Noah isn't a fan of laces. We need something that we can quickly put on him. He'll fight us if we have to lace up something. But hopefully the orthotist will have some ideas or options for us that maybe I haven't thought of.

We put in a request in for a stander for Noah. We're hoping for a sit to stand device that I think would help Noah with sit to stand patterning and would be easier for me to load him into. I fear it's time to get Noah weight bearing and we really need to move forward with those types of equipment. I don't know that it will be approved or not. But I continue to be as hopeful as I can be knowing that it too could likely face the same uphill battle that I'm facing with the Mygo Leckey Feeder Seat. How I would so love it if I didn't have all these worries, headaches and daily battles on Noah's behalf. If I could just be mom. That I didn't have to spend hours advocating for Noah each day. That we could just be. Maybe someday - but for now I fight on.


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