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.

Tuesday, April 12, 2016

Large Rifton Gait Trainer

Anyone that is on FB and hasn't subscribed to any of the special needs equipment groups should check them out.

Jacob got a medium gait trainer when he was 3. It was paid for by my private insurance company. Since then I have left my job and my husband's insurance sucks. Jacob is now on CMS/ Pedi-Care  (Florida) I have been told it is hard to get gait trainers covered unless they can navigate them through a room. Well Jacob can bear weight and walk forward ina straight line, but other than that is is more just something for him to sit and stand in whenever he feels like it more than walking. I lock the wheels in place and let him stand. I put slack in the seat so he has to bend his knees a little to sit when he needs a break.  I wasn't even gking to bother trying to fight insurance for the next size up, because they just paid for his crappyou standard that I hate just over a year ago. This being said...I happen to be causing through my FB news feed a few months ago now and someone in Georgia was offering 1 for FREE! I happened to be waiting for income tax time to spend the $1400 to buy the new frame out of pocket.

You better bet my sister and I took a weekend to drive 8 hours each way to Georgia from central FLoria to pick it up for him. Thank you to the very generous family that gave us this wonderfulink gift! We passed our medium gait trainer to another family I know personally. His new pacer just fits him. He will get years of use out of this. I am thrilled there are people out there willing to pass on their equipment.

We recently were fitted for a pair of HKFO to help with how his legs turn out and give him better positioning, but 2 appointments later they still don't fit right.

Jacob's new wheelchair!! Convaid Rodeo Tilt

Loving the new chair. It isn't 100% perfect but 100x better than his old Quickie Zippie chair for both of us!

We had to add alot of accessories to make this chair work for him and YES insurance paid for it 100% without us having to fight for any of it.  (He has CMS - Florida) It only took us about 2 weeks to get approval once everything was submitted. The entire process from the initial measuring and ordering with the PT and DME sales person was 3 months.

He has hard laterals on the side that curve a little contouring to him to prevent some of the leaning  that we had constantly in his old chair even with the laterals.

 He has an thick padded anti thrust cushion with a hard bottom to help with his extention.

There is a leg piece to stop his legs from hanging over the side of the chair or it can be used to help prevent scissoring.

There is a contoured cusion for his head and straps for his feet when needed.

He also has a padded tray and it is the transit model that he can use on the bus or in a van.

I think some of the fabric was extra options to like between the seat and his legs and the extra straps on the side to stop his arms from falling back.

From website:

Rodeo Tilt Standard Features:

    • 5-45ยบ of Adjustable Tilt  
    • Stylish Padded Upholstery 
    • Adjustable One-Piece Push Handle
    • 2-Point Positioning Belt
    • 7.5" x 2.5" Front, 11.5" x 2.5" Rear Solid Tires 
    • Quick Release Rear Wheels 
    • Elevating Legrest with One-Piece, Angle Adjustable Footplate
    • Seat Depth Growth of 5"
    • Silver Powder Coated Frame
    • Closure Strap
    • Wheel Locks
    • Made in the USA p
We have had it for abiut 2 weeks and have taken it everywhere with us. Usually he sits in his Advanced Mobility Liberty Stroller because we never took his old wheelchair with us. I really hated that chair.

This chair folds down with 1 movement and it is small enough to fit in the back of our van with some space to spare! His old wheelchair which barely fit in the van fully assembled was 75lbs. It would easily take 10 minutes to take apart and put back together if I had to. I'd say this chair is between between 40 and 50lbs.

Also what it doesn't say in the above specs it has a 0-20° back rest adjustment without the tilt.

Today we are at a specials needs dentist and I have had atleast 5 people comment "oh wow that is a nice wheelchair".

*nearly 6 months later*

I started writing this post back in November. I still like this chair. The fabric started to stretch a little on the back rest causing his back to curve in a little. I was able to lower the strap down that holds the fabric to the frame to fix this. Convaid also sent extra velcro strap to reinforce the back. We tried to get a firm back for the chair. Unfortunately they don't make 1 for this model. I learned after weach bought this Convaid Trekker has a foldable frame with a hard back seat that comes off. If I had the choice to rebuy this chair I would probably look into the Trekker 1st. (I have no idea on sizing for it etc) other than that I would choose this chair again with a better harness. He has the standard harness on his chair. He has a lot of extention and pushes on it so much he manages to get the straps loose some which then causes him to get his shoulders out and he starts his leaning. The straps that keep his pelvis down are kinda like backpack straps on each side. I have to retighten them everyday but it only takes a few seconds. We barely use our other stroller anymore. We used this chair almost always. I would give it 4 out of 5 stars..with a better harness I'd say 4.5 stars because nothing is perfect. We tool the extra head rest off a few months ago. We decided his head drops forward less without it. He also ended up needing a neck support collar, but that is more due to his spasticity than his chair. Nothing stopped his head from dropping. Laying flat he could try to tuck his chin into his chest. I lover that I can fold the wheelchair down. Takes about a minute and pick it up to put in the trunk of my van. I'd say it is about 40ish lbs still but better than the 75lb chair he had before.