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.

Moving about

Jacob was sitting in this chair. I turned my back to change his sisters diaper and he managed to wiggle himself into this postition. He was kicking his legs making the chair rock laughing. I may let him do this more often lol. Jacob had phenol and botox on May 2nd and he goes again tomorrow less than 5 months later for another round. He is not near as tight as he was before, but within another month or 2 he would have been. We are also having some issues with getting his formula provided, but I will post about it when I'm not on my cell phone.

Tumble Form 2 vs. Special Tomato Soft Touch Sitter

So I poured over the decision to pay out of pocket and try the special tomato seat over just dealing with the Tumble Form floors sitter I already own that was provided though Early Steps for my son for several months. There are 3 main reasons for my decision to change seats. 1. The harness in the Tumble Form is HORRIBLE 2. It was heavy and I hated moving it from room to room and I thought the base with the wheels was pretty nice on the special tomato. 3. The tumble form cover is very sensitive...our chair being less than a year old  already has a rip in the base.

There is a great link from adaptive mall that tells you the difference between the 2 seats HERE.

I like that the Special Tomato has a 5 year warranty. The harness is honestly what sold me. Our issue with the tumble form was the straps cutting into my son's neck and him leaning to the left no matter how tight I made it. There is slightly more side support in the special tomato seat, but he still leans but not as bad. I LOVE the harness. It does not cut into his neck anymore. He does not hang to the side and with the new crotch strap he can not arch and make himself slip down in the seat. I have found him on several occasions in the tumble form seat where 1. someone did not put the lap belt on at all or 2. It was not tight enough and he had manage to slouch out of the seat to the point that the clip that goes on his chest was under his neck. Also from the arching the straps were leaving a constant bruise or rub marks on his hip bones from the pressure of his arching or the tightening of the straps. He had bruises were the buckle was as well.

I spent $440 out of pocket for the chair I bought my son...$100 more for wheels on the base, which is crazy..There is 2 vertical screw holes on the base and you have to add the wheels yourself when it arrives in the mail...probably could find some at the hardware store cheaper.

Tumble Form 2 Floor Sitter

Special Tomato Soft Touch Sitter

The holes in the seat are in the same spots minus the special tomato having a 5th hole at the bottom for the crotch piece by the leg abductor making it 5 point. Hmm outside of my love for the wheels on the new base, I probably would have been just as happy ordering the harness for $29.99 from adaptive mall for the special tomato and putting it on the Tumble Form. I do believe it will work perfect! The only difference is you would have to take of the crotch strap piece off which is removable. I like that the belt is thinner personally and that the harness is padded. Seems like we get a more secure fit. The Special Tomato chair also has 2 extra straps attached that you can attach to a chair like a booster seat at a table..this is nice, but I honestly was able to do the same thing with the tumble form. I just unhooked the back strap and weaved it though the back of the chair before I tightened it down.

Love the seat..not really happy his feet hang. My children enjoy pushing him around and the seat is softer and you can squish it with you hand compared to how firm the old seat is. I still have issues with the strap across his legs causing red areas so we pad it with a cloth diaper now. This was the 1st time he sat in the new chair

The old seat. He was sitting pretty good on this day, but usually he leans to the side. The chest strap piece moves up and down and does not allow a tight fit to keep him sitting strait up. Like I said I think the special tomato harness will work on the tumble form seat if anyone else has the same issue and it would be a much cheaper solution that buying a new chair. I just HAD to have the base with the wheels though LOL

Jacob's 1st day of school and bus ride

Well, Jacob actually started school 2 weeks ago...naturally he slept through it.



Jacob's 1st day of school at Achievement Academy 8/6/12

Jacob's 1st wheel chair lift and bus ride 8/20/12...still sleeping

Jacob's brother joined him at his school on 8/10/12...doesn't he look thrilled?

Jacob's NEW CHAIR came in 8/14/12 LOVE this chair. The harness is so much better. like that it has a crotch strap so he can't arch in it as easily or slide down. It is softer and not as hard. Best of all it has WHEELS on the base! We bought this at adaptivemall.com  He also got new glasses...still don't see a difference in his vision.

Jacob leans to the left almost all the time. Drives me NUTS we go this Thursday to Shriner's to see if his spine is the issue.

3 years old and school is starting soon!

I can't believe both my baby boys are 3 years old already and they will both be going to ESE preschool. Jacob is going to a special charter school that I am super excited about. He starts MONDAY!!! We go for his orientation tomorrow. He is getting yet another new pair of glasses that will hopefully stay on his face and help him see. He is doing great since the surgery. He was 1 red area that has recently shown up in the middle of his incision that I am watching. He looks healthier over all...not so sickly and dehydrated. You can tell he is gaining weight when you pick him up. He is a heavy little boy! I am looking for info on how to get him on the waiting list for the state Medicaid waiver program. I hear the list is years long. The long awaited dynasplints he has been waiting on for his legs have so far been a huge disappointment. Night number 2 THEY TORE HIS LEGS UP!!!! So now we wait for them to come out with new padding. They are nothing like expected and $2800 a pair is crazy for what they are. They still allow his legs to bend, but apparently give tention to encourage him to keep them strait. I thought they would force a good stretch. Hopefully they will work, but right now I am really disappointed. The night they left his legs scabbed I made sure I could fit my fingers under the straps and that they were not to tight, but I guess the pressure of him bending his legs all night did it. I am adding pictures at the bottom but I am posting from my phone and have jo clue what order they will end up. I will post again on his 1st day of school.

Nissen Fundoplication

Way behind on posting! Jacob had his Nissen Fundoplication done on July 5th. He did WONDERFUL. He went back around 7:30 am and did not get out of recovery and into his room until around 12:30. The 1st days was the worst. He was crying a lot and was not allowed to eat. We think he was having some withdrawals from being off a few of his medications that could not be given IV. They gave Valium to help with that. Day 2 he was back to his normal self for the most part. He did not require anymore pain meds by day 3 and we left the hospital on day 5. He still has his gaging and dry heaving episodes, but NO VOMIT! He is already gaining weight. He is 30lbs now! This big boy will be 3 years old tomorrow (July 18th) Jacob seen the nurse practitioner today and they released him to go back to normal Jacob activities including full baths. :-)

Day of surgery just out of recovery

Day 2 watching TV

Day 2 He earned diaper hand after knocking his IV out. Smiling for Mickey Mouse Club House now

The day we left he hospital. We switched the long tube back out to his AMT Mini One

Riding home from the hospital

I've been a little crafty lately. We made a new head rest for Jacob's Seat2Go with the help of Jack's aunt. She has co workers the work metal.  I also made him and a friend a weighted blanket. These are his birthday gifts and of course he will get another Mickey Mouse DVD

The head rest that was custom made for us

The new improved head rest in Mickey Fabric and the old one is the blue 1 above it He was constantly getting his head around the old one

The weighted blanket I made Jacob

The weighted blanket I made for a friend

Surgery Date

Jacob is having a nissen/fundo July 5th. I worried, but can't wait for it to be done and over with. I am praying for exceptional results!