I tell you this because I scored BIG TIME in the durable medical equipment department! I happened to see a post about someone selling a Convaid umbrella style wheelchair stroller. Well, they were asking for a donation for them to make to the Make a Wish Foundation and $25 for shipping. So, for $125 I used some of Jacob's savings to buy this stroller for him. I was hoping to get a wheel chair van this year, but it is just not going to happen unless an act of God happens. His wheel chair is complicated and extremely heavy to lift and put in the trunk of the van (and it messes up how everything is positioned). I thought this would be a great option for doctor appointments when I am alone with him and that it may work better than the Seat2go we have when we go out to dinner. Taking him in his actual wheel chair to dinner brings a lot of stares and like I said it is so heavy to load and unload and the Seat2go works well for the most part except we end up having to carry him in (he is 34lbs now) and the seat along with 3 other children etc. So, this was my justification for spending the money. We are going to try and get a grant from our local branch of Center for Independent Living to get a wheel chair lift on the back of our van. I actually plan on doing the paper work for it tomorrow, so it will help when I have to pick him up from school when he is already in his regular wheel chair.
The wheelchair stroller we bought was the Convaid Lite Rider. This thing base price retails for over $1700 and I got it for $125!!! This chair is really meant for someone who has better trunk control and I was worried he would need more lateral support than this would offer him (because it has none) so I had to think of what I could do to help. I figured if it did not work I could just resell for what I paid. So my initial plan was to buy a Special Tomato Soft-Touch Seat Liner but I worried about if it would be a bigger pain to weave and unweave the straps through the seat liner when folding the chair than it was worth....once again on the facebook group someone was offering one that appeared to be a size 3 seat for $50 plus shipping. I bought it $65 including shipping.This was great because I was actually planning on spending $160 buy it new. It came in the mail the same day as the stroller and it looks like it may actually be a size 1...but it did fit in the seat nicely and gave him the lateral support. As I suspected it was going to be a huge paid to thread the straps through it EVERY TIME when we used it.
I had a back-up plan though. I ALSO bought a Snuggin Go Too
Baby Jogger City Mini double (best stroller EVER)thay he normally sits in and his Graco Nautilus car seat. The way the Convaid is made with the deep seat it just works...at least for now. I have the larger 14 inch stroller which is actually meant for bigger kids I believe 8-12 years old, but with everything on the smallest setting I think I can get a few years out of it before I have to buy the addition head rest etc. Convaid makes lateral supports and H harnesses etc, but I find these options much cheaper. The stroller came with shoulder straps and a padded crotch harness. The next thing I am going to do is get 2 padded seat belt covers and a heavy duty piece of velco to sew onto it to make my own H-harness then my stroller will be PERFECT!
|Convaid lite rider|
|It weighs around 20lbs I think the smaller size weighs 16.|
I also wanted to update on his latest Neurologist visit. I discussed with his doctor about his sleeping habbits. He sleeps all morning, is awake all afternoon, and often did not fall asleep until 2-3am.
This time last year he was on A LOT more meds than he is right now. Toward the beginning of the school year He was on baclophen 3 times a day, trileptal 2x a day, and Klonipin at night. I weened him off his afternoon baclophen and his night time klonipin toward the end of August and early September and did not notice a difference in his sleeping habits and it also made no difference in his tone. So, the neuro suggested we take away the morning baclophen and cut the dose of his seizure meds down in the AM (we also discussed weening him from seizure meds of the next 6-12 months).
WOW! The difference is AMAZING. He went from sleeping through school almost EVERYDAY to being awake, alert, and looking around the room. The teacher says he now laughs, smiles, and is "chatty" all day long. She said he is tracking objects better and participates with a lot of help and only takes a 30 minute nap now. He is also better about sleeping at night and I have stopped giving him the melatonin I had been giving him in efforts to get him to sleep at night. I am waiting for the neuro office to schedule him for another 24 EEG and a MRI. This is being done to determine if he truly does have CVI and to see if he is having seizures or not. She wants a base line before we ween his meds to much. We both agree that we don't think he is having seizure and hasn't really ever had a seizure, just abnormal brain waves, so over the next 6 months to a year he MAY be off ALL MEDS.
What will we do about the spasticity? We are working with his physical medicine doctor. Early September he received his 2nd round of phenol and his 3rd ever round of botox. The combo of phenol and botox has worked extremely well for him, way better than any oral medication has. I think phenol and botox injects can manage his spasticity better than keeping him drugged on a medication that does not do much for him anyway. The down fall to the phenol is that the medication burns the nerves causing the tightness in his legs...it regrows over time...being the reason we have to repeat it.
Things I have noticed since his 1st injection of Phenol in May.
1. The tremors in his legs 100% went away.
2. His legs are MUCH weaker, but he still stands in his gait trainer, but he is much more floppy
3. He used his tone to help take step, he rarely takes steps in his gait trainer on his own now. He kicks and lifts his legs when sitting, but when he is standing and he is pushed in the gait trainer he used to start moving his legs and walk across the room, now his poor legs just drag behind him. It truly shows how weak his muscles are.
4. The phenol was probably over done in his left leg. Instead of his legs scissoring and being stiff, they are now floppy and his left leg rotates out and kinda does its own thing. You can kinda see what I am talking about by what his legs is doing in the stroller picture. His legs is also about 1/2 inch shorter than the other leg.