Our Little Jacob

This is a blog detailing the daily struggles of having a child with Spastic Quadriplegic Cerebral Palsy. My son is 1 of 2 surviving triplets. My son and his identical twin brother Logan who passed away at 6.5 months old had Twin to Twin Transfusion before they were born. They were delivered at 28 weeks to try and save all 3 of their lives. I have a hard time connecting with other parents raising children with severe disabilities so, I thought I would branch away from my other blog to blog just about my son and his special needs in hope of reaching out and supporting other moms dealing with similar issues.

Wednesday, October 17, 2012

Convaid Lite Rider and Snuggin Go Too positioner

I'm a member of quite a few groups on facebook that has parents and caregivers that buy, sell, and donated medical equipment. Since it is illegal to sell something private insurance or medicaid paid for, a lot of people give away equipment for just the cost of shipping. There are other people who will charge their co-pay...and then the trolls who lie and say they have a co-pay and sell stuff they don't pay for, but giving everyone the benefit of the doubt I try not to judge, but seriously people will post that they have 20 cases of formula for "$20-50 co-pays" Really? You paid $50 for something when you already had 10-15 cases of the same thing at home...I think not...I would tell my DME not to send it. Anyways started ranting off subject...

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
I found it a little cheaper than the website for $32 with free shipping on Ebay. I did not buy the bottom piece seen in the picture for the legs. the shoulder piece is adjustable and it has a ridged back to it with  foam that is kinda to soft to give excellent support. I really like this though...it could be better. It does not give wonderful support, but does give enough and works great in our 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.

This was the 1st day I put him in it. I love how I have the straps adjust just right that they are tight enough to stop him for leaning to the side to much but I can still unsnap him and pull him out like he was coming from his car seat. Not having to unbuckle 4 clips is great
I like the way it pushes even as an older used chair. It is a little short for him at a dinner table, probably wouldn't be fore an 8 year old, but for him his head is the only thing that would be above table height. I'm really happy with this. It folds up nice and small and lays flat in my trunk, so I can now keep it, my double stroller, and my daughter's snap and go stroller in the trunk of our van. I will probably use this instead of my Seat2go it is less complicated and supports him better. Anyone looking into a convaid stroller I think they are very well made and great for the right kids. I'm not sure Jacob will still be able to sit in this when he is 8-9 years old without me paying the crazy cost of the better lateral supports and head rest, for now it is great.

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.


  1. I happened along your blog and so enjoyed reading it. Jacob is a beautiful child. I'm sorry for your loss of his twin. I too am a parent of a child with spastic quad CP, so I can well relate to your daily fears, struggles and frustrations. Unfortunately, we lost our Angel just this past May at the age of 27. Just 5 months before her 28th birthday. I'm so glad to read of your success in weening Jacob from some of his meds and his positive response. It did my heart good to read the comments from his teacher about his increased alertness and improvement. I hope you continue to see positive results. If you ever want to connect with other CP families, please look up our families @ Cerebral Palsy Family Network It'd be so wonderful for you to share yours and Jacobs' story. My thoughts and prayers will be with you and Jacob and your family as you face your daily challenges. God bless and best of luck!

  2. Hi
    Would love to hear which pages you find good on FB, Im looking for some used equipment for my son. Thanks
    if easier you could email me via mariecbradley@gmail.com