We are working on the progress of things here. I talked with McCrocklin Mobility about our situation, they said we would need to come in for sure to get pricing (which we will do soon) but just from our chat on the phone, they said that we would need a full size van. The lady I spoke with explained that we could even get it set up so the kids wheel chairs act as their "Seat" in the van so we wouldn't have the tearing down and setting up each time we need to use them. That would ROCK! Both the boys have tilt wheel chairs and our daughter has a regular one.
Joey uses his more frequently because his muscles are not growing and developing as they should. Because of this, his body uses more energy to do things like walking and getting around is leaving his energy low for playing. The metabolic doc we see felt if he started using his chair more than he would have more energy for being a kid. His also is more supportive and tilts back for fatigue and sleeping. It is also designed to keep him safe if he would have a seizure while sitting in it.
JJ uses a tilt wheel chair also, however not as frequently. On days when he is sick, he needs the added support because he gets more "floppy" and his energy is low because of the illness. Also, if we are having a long day of appointments or we are some place that requires lots of standing and walking, he needs it then as well. Mito truly affects their energy level. The more energy you spend, the harder it gets for you to function.
Abby has a regular wheel chair that she utilizes for standing and walking. As she has grown, she has more and more issues with standing and long distance walking. Often, a trip to Wal-Mart is too much for her. This gets tough on her as she doesn't want to use the chair but she has come to realize on her own that sometimes it's better to just use it so that later she can have more fun playing. It's tough she has come to that understanding!
Our van is so small that all three of these chairs get completely torn down and stuffed... yes STUFFED in the back of our van. We had to remove one of the seats in the back in order to do so. The chairs get harder wear and tear because of this. As you can imagine too, it's quite a process to unload and get everyone situated.
Please join us in making this possible!
We have bracelets for $5 each (see last post) and then you can also donate to the right of this post any dollar amount you like! That money goes into a designated account that wont be touched until time to make the purchase and it's tax deductible! Thank you!
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