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.

Wednesday, August 26, 2015

How to modify a backpack for a feeding tube pump

I've been modifying backpack for probably a year and a 1/2 now. Affordable Feeding Tube Backpacks of Facebook. This is the video I made for those who asked on how to make their own. The 2nd link I'd to another really simple way that doesn't require a sewing machine.

Tuesday, May 12, 2015

our Spastic Quad CP son in Macclaren Major stroller

I've posted about this stroller Before and all the strollers we have had. This had been the 1 we use the most and for the longest. Jacob will be 6 in 2 months. He is a tall about 42 inches and 53 lbs. We still use the size 2 special tomato chair in it. We tilt the chair leaving a gap at the  back/ bottom of the chair. We secure it with the strap that comes with the chair around the  back of the stroller. It works well overall. We do have some head control issyes and he likes to lean left  but this option has been best for going out in public without taking the 70+ pound wheelchair.

I'm posting today about the accessories that you can buy with the stroller. Today I installed the $44 sunshade I bought from Amazon.com. It is okay. It doesn't flip up out of the way. It is fixed in 1 spot. It is easy to remove though. You can fold the stroller with it attached, it just looks weird, but it wirks. I honestly haven't read the directions on it there is a certain way to fold it with the stroller or not. I was happy it fit over the tomato seat. his head is right a the top and he is just about to small for this seat but for now it is great.

I like to make sure things will work before ai spend big money on them. I'm working on buying accessories so he can sit in the stroller without the tomato seat. His head just above the back rest of the stroller when sitting in it without the seat.

Over the weekend I made my own chest pads aND made really ghetto lateral supports just to see how he sat before I ordered the factory ones. I think I will keep my chest pad, but I did find the laterals on ebay for $65, so I bought them. I will update this again once I have the rest of the accessories. For now this is what I have.


Saturday, April 11, 2015

About to check out Eye Gaze and found an Awesome Tooth Brush.

So while at therapy last week a representative came by during speech therapy to test Jacob to see if he could be a candidate for Eye Gaze. We are currently on the waiting list, which I guess is a few weeks long for him to have a 1 month long trial with the technology to see if he can learn to operate it. We have been working with him at therapy to make choices by looking in the direction of what he wants. I think he understand but he is still pretty hit or miss on if he wants to participate. He is still very engaged with Mickey Mouse Club house and that continues to be 1 of his only motivations.

I Seen someone post a toothbrush they found on Amazon it had bristles 360 around the brush. They have an infant 1 for up to 24 months and the next stage up. I accidently ordered the baby one but it works and he loves it. He laughs the entire time I brush his teeth instead of clamping down on the tooth brush or turning his head away from me while I attempt to brush his teeth.

We have had a swing away electric wheel chair lift that was donated to us in our garage for well over a year.  We didn't have a hitch or the extra money to have any of it installed. Well, my dad and I traded vehicles over Easter weekend and we now have an suv with a hitch. I really don't need the fancy, heavy lift we have, so I looked up manual lifts. I was suprise to a owe how cheap they are and now I'm thinking why didn't I just spend the $250 and have the hitch install and buy 1 of these geez! I'm going to buy 1 very soon.

I also just wanted to mention (not sure if I have before or not) that I make feeding tube backpacks. I modify toddler backpacks mainly and add straps and holes to make them work for Infinity and Joey pumps. I have a Facebook page (Affordable Feeding Tube Backpacks for Special Needs Children) where I take orders to modify the bags. I charge the actual price of the bag chosen then charge shipping to the person and $7 for Joey and $8 for Infinity to modify. That covers my paypal fees,shipping supplies, and supplies need to modify the bag. I don't do it for profit. I do make $2-3 for my time. I've made about 100 or so so far. I'm going to post a blog on how to modify them yourself. It is so easy. For anyone who asks I try to send them instructions to make them as well. Lately I have been exploring other bags. I currently mainly use Skip Hop Toddler backpacks they work perfect for the infinty pump and everyone who had used it with the Joey says the work well. For little ones who are mobile under  2 or 3 years old Skip Hop makes a small harness style backpack that already has a chest clip that works very well. This week I was challenged to modify a bag for a 8 year old little boy who uses 2 pumps and a ferral bag at the same time. The bag I used was Obersee Kid's preschool backpack. This bag would also work well for Joey pumps since it is slightly longer. It also has a chest clip already!

Tuesday, June 24, 2014

Jacob's newest accessories

I bought another stroller today.  I seen a Maclaren Major on Craigslist and I couldn't help myself. I have to try everything.  He fits decent without an insert, but I will definitely need to buy the lateral cushions.  I love that his old size 2 special tomato sitter fits in it. I also like that I can make him recline a little more than he would in the seat itself by angling the sitter a little. I let him sit in the stroller about an hour after we got home and he did well.

I bought this for the summer so I don't have to lift his 62 lb wheel chair in and out all summer during our 3 weekly therapy visits. I might hate it next week like the convaid we tried..not that I hated that one it just didn't work for us.
Maclaren Major umbrella stroller with size 2 special tomato soft touch sitter.

I seen someone post a few months ago on Facebook about an idea for a bed for a special needs child. Well of course I needed that to. Searched on Craigslist and ta-da the Step 2 Loft bed I was searching for had just been posted for $75 2 hours prior. It was mine. mine. Mine! I really love this bed for now. Eventually we will work on getting him an actual hospital/sleep safe type bed, but as a cheap alternative for a non mobile child this is wonderful.  At perfect waist height. Makes late night diapers changes easier. His matress is thicker than normal because of the memory foam so we added a board that we cushioned "just incase" to secure the opening toward the floor.

There has been talk of having a baclofen pump implanted. We met with a neurosurgeon. Jack and I decided that we are not at a stage where this is an option we are willing to consider. To many risks and complications.  If we keep him stretched and up in his gait trainer his legs are not so bad. He definitely could use some botox in his hamstrings right now but overall as long as we keep him weight bearing he is fine. He has been taking tons of steps lately. He walked across the distance of our small living room atleast 20 times the other day. He kept putting himself in the corner.
 Playing in mashed potatos and cottage cheese and licking it off his hands.
 Putting himself in the corner
My backyard water park lol

Tuesday, June 10, 2014

Jacob got a new Rifton prone stander

 Jacob has been a busy boy lately. He got this new stander. He also got ultraflex knee immobilizers and a new pair of AFOS and shoes. He went on his 1st roller coaster ride today at Legoland today. Also added some pictures of him at therapy in his new knee immobilizers in the cage. Daddy took him skating on Saturday at his sister's birthday party.