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.

Medical Equipment

I thought I would make a list of what my son uses on a daily bases past and current and what we think about it.

**Many of these images were taken from website and google search**

Rifton Toddler Chairs

The Rifton Toddler Chair is designed to encourage normal sitting posture. It has adjustments for varying degrees of abduction and knee flexion. The Toddler Chair is designed for use indoors on level, dry surfaces.


My son personally did not love this chair. He has poor trunk control and tended to lean to the right no matter how tight I made the chest harness. Though I did love that it has a base and I could wheel it around the room.
Taken from the website: www.charleywrap.com

The unique design of the CharleyWrap has enabled our daughter to achieve a degree of independence we had never thought possible. The support offered by the brace is such that Charley is able to: sit in a chair unaided, be propped up with one hand, and sleep without positioning aids.

CharleyWrap does not create pressure sores, and does not restrict breathing.
It is lightweight and comfortable.

Its discrete design means that no-one can even tell it is being worn.
Because the CharleyWrap is not bulky, users are able to continue to use equipment (such as high chairs, standing frames and car seats) without replacements being necessary.
It can eliminate the need for Sleep Systems.

Every aspect of the design has been well thought out - from the choice of fabrics used to the multi function fastening system; to the specific dimensional ratios; and the placement of the boning.
I bought one of these for my son desperate to find something to help him sit up when were in out in public...shopping carts and high chairs. He has head control just no trunk control. It does serve its purpose. The lady that makes these is in New Zeland. She charges $500 dollars in US currency!!! He had a growth spurt shortly after receiving this item and the g-tube port never lined up. I mailed it back to her and she tried to fix it. It fits, but I never cut the hole out for the g-tube. It still is a little snug for him but works. I will probably find a way to extend it myself to get my money worth when it becomes to small.
My son sitting up in a resturant chair using his arms for support. My son likes to throw himself backwards so you can also make your own strap to go around the back and tie to the front of the chair to prevent from falling back

It helped him sit in the rifton chair with better posture. I did take one strap to help him from falling forward.

Tumble Form II Deluxe Floor Sitter. Includes both the Feeder Seat Positioner and the Floor Sitter Wedge. The wedge can be used to position the Feeder Seat Positioner in an upright or a reclined position suitable for the child’s activity. A Velcro® brand hook and loop system holds the seat securely, allowing instant adjustability
My son is 2 1/2 and uses this everyday. I love that you can sit it up as high as I want to lay it back. It is smooth and does not cause any pressure spots on him. He still manages to make himself lean to the side in it. I hate putting the straps to tight because the buckle on the waist will leave a bruse because he arches his hips all the time. He also has the tray. It is nice and adjust to different hights and angles

Three-in-One TriStander® from Tumble Forms 2®
The TriStander® positioner does the job of three standers. Its unique design allows prone, supine or vertical standing so a single stander can provide a variety of positioning needs. A foot-operated pneumatic tilt mechanism makes it easy to adjust the stander from 15° to 90°. The wide range of adjustability in the TriStander allows it to grow with the child. The TriStander is available in two sizes. The TriStander 45 accommodates children 32" to 45" tall, weight capacity 70 lbs. and the TriStander 58 accommodates children 43" to 58" in height. Weight capacity 150 lbs. Latex free.

TriStander® features:

  • Adjustable, soft, cushioned pads
  • Pads are seamless, impervious to body fluids and wipe clean
  • Module cushions are interchangeable
  • 3" double locking casters prevent roll and swivel
TriStander® includes:
  • TriStander frame
  • Shoes with bar
  • Hip support
  • Headrest
  • Knee support
  • Trunk support
The TriStander can also be ordered with the same as above, with the addition of the Activity Tray.

I like this stander. Jacob has 1 prior to this that I can't recall the name of that was horrible he slipped down in it and his head was the only thing stopping him from falling out. I like this one even though it can be a chore to get him in it. I has pleanty of straps to keep him where he should be. I love that I can adjust it to any angle I want and he can face either direction. It is also nice having the tray to push up to it.

Quickie Zippie 2:
The Zippie 2 is a light-weight, folding chair designed just for children. Its locking brace gives it an easy-pushing, solid feel. It's also extremely adjustable and has the ability to grow with a child. Swing-away footrests and quick-release components make it easy to transport.
The ZIppie 2 folding back and folding cross-brace design the Zippie 2 folds to a compact size for storage and transport. The compact package is small enough to fit in almost any car.

Jacob's 1st day of school...fast asleep
The seat in this is solid. It is secured with 4 latches. To fold this beast up that ways about 60 pounds atleast if not more... you have to take the solid seat off. Then you remove the arms and the foot pedels. It folds in and then the push handles fold down. It is such a hassle and take a good 10 minutes to put together I leave it together and it just fits filling the entire trunk of out Ford Windstar van. Even with th side supports I still have a hard time getting him not to lean even with the chest strap. It is a pain having to find all the snaps to get him in to, but it solved many problems. We can not take him into restaurant and the movie theatre wthout having to leave him in a stroller.


Rifton Pacer Gait TrainerDurable, adjustable, portable, the Pacer Gait Trainer empowers clients of nearly all sizes and abilities to improve their mobility.

  • Prompts mount anywhere; no tools required
  • Simple two-handed height adjustment in 1" increments
  • Innovative casters with separate swivel lock, brake, variable drag and one-way ratchet control
  • Fits easily in car trunks and through 32" door frames
  • Easy rear access for transfers from Rifton SoloLift
  • Clients can face either way (posterior or anterior)

This was either the small or mini gait trainer

The new gait trainer. It is a size medium. I like that the frame folds down on this one.

 I like that he can do some actuve standing in this while getting trunk support. It has a thin seat between the legs for him to sit. There is straps that go around the ankle to stop his legs from sissoring. It is a heavy piece of equipment that take a lot of space, so it make it hard to take to the park. I can fit it in the front seat of my van though. He does not have the ability to manover this around the room, but with the wheels locked strait he can walk forward in it. He stands much better in it now than when he 1st got it. It has allowed him to gain strength in his legs and helped with his head and trunk control.

Kangaroom Joey Enteral Nutrician Pump
The Kangaroo Joey™ enteral feeding pump provides feeding and flushing in a completely portable device. This feeding pump is the first hydrating and ambulatory enteral device available. It assures clinicians of accurate and reliable function while providing patients with freedom and mobility.

We used this pump for about a year. My son has severe reflux and I decided to start making my own formula for him. The pump worked fine while on commercial thin liquid fomulas, but when I started blending my own foods the pump constantly alarmed saying it was clogged even when the foods (pureed stage 2 baby foods, milk, and rice cereal) were water down and made as thin as pediasure...I guess it didn't like the texture? Anyways it was a nightmare. If your child is on commercial formula and has no issues with it the pump is fine. I like that it has an auto prime feature so you don't have to hold the button down the entire time. I also like that you can delay a feed. For example my son takes medications 30 minutes prior to eating so I could hook him all up and delay the pump for 30 minutes. His current pump does not have the above features. This pump is about 2x the size, heavier and has to have a drop 6 inches i believe between the bag and pump to work correctly. It does come with a back pack, but if you have a child that can walk or crawl this is not the pump they need.
The EnteraLite Infinity enteral feeding pump allows both pediatric and adult tube fed patients the ability to maintain a normal lifestyle, resulting in increased compliance with prescribed feeding regimens.
Accurate: Maintains +/- 5% accuracy at any flow rate and when operated in any orientation, allowing patients to comply exactly with prescribed feeding regimens.
Portable: Weighing less than 1 pound, the pump is easily carried in a custom-designed carry pack for extended use, resulting in fewer limitations to a patient's normal lifestyle and increased feeding schedule compliance.
Rugged: Designed to perform consistently well under a wide variety of conditions. Does not require any regularly scheduled maintenance and can be cleaned by simply rinsing under running water.
Easy to Use: Extremely easy to operate and program, allowing the caregiver the ability to focus on other areas of care.
Full-feature set available only with the EnteraLite Infinity:

  • Operates in any orientation
  • Bolus, continuous, and intermittent feeding programs
  • Selectable flow rates from 0.1 ml/hr to 600 ml/hr
  • 24-hour battery
  • +/- 5% accuracy

LOVE LOVE LOVE this pump. It is tiny. It comes with a tiny bag (or bigger) that can fit on your child's back. You can set it up to take all the air out of the bag and lay it flat on the ground if you want and it still works. It does not have the delay feed feature (or I have not figured it out) nor does it auto prime. I love that it is made to take thicker foods and I have nevery had an issue putting blended pureed foods through it.

A MIC-KEY* Low Profile feeding tube

(MIC-KEY*) has been inserted into your

stomach through the abdominal wall. There

is an inflatable balloon at one end and an

external base at the other. This tube allows

the intake of food and water that your

body requires.

Your specialist has measured you to ensure

that you have the right size MIC-KEY*

feeding tube.You also received care and

maintenance instructions. This pamphlet will

help you remember the instructions.You

received instructions about your diet and

medication. Follow the instructions closely

and never put any other diet or medication

through your tube.

My son had a long none removal tube when his g-tube was 1st placed. It was clear and had a circular disk that stopped at his skin. His GI doctor made him keep this tube for 11 months even though it was becoming weak and constantly sprang leaks. It started off at about 2 foot long and ended at about 6 inches. It was hard to keep it from getting pulled and I had to leave him in onesies all the time.

I LOVE the Mic-Key button. They are easy to insert and easy to care for . Though I was always worried about his g-tube being ripped out...after his initial mic-key was placed, it was nearly 5 months before we had to replace it. 3 days after having a brand new one placed my friend was caring for my son and had the extention tubing on it. It got pulled and fell out. I forgot to pack the syringe to deflate the ballon so she had to cut a hole in the $1000+ button to get it back in the hole until I got their to fix it. I had a back up and was able to replace it easily. Since then it has fallen out 4 or 5 times. We always carry the correct size syringe to just deflate the ballon and put it back in. So far we have never had issues with the ballon leaking.

8/28/12 We switched to the the AMT Mini One button in May. I LOVE it. Has not popped out 1 time. We recently had some leaking issue and it was because the water volume was a little low. I do think I prefer the extentions for the Mic-key button better. They are thinner than the ones our DME provides us for the AMT both extentions can be used on either button though.


Otter Bath Chair

Available in small, medium and large.

Seat and Back are angle adjustable to 5 locations at 0, 22.2, 45, 67,5 and 90 degrees.

Adjustable slip-resistant legs raises chair to a 5" height range. Folds flat for storage. 2 year warranty.

The Otter bath chair’s seat and backrest angles are independently adjustable to suit child’s specific upper and lower body positioning needs. Can be used upright or horizontal.

The Otter bath chair is certain to provide optimal support, comfort, and safety to suit each individual’s needs.

Ours has a stand that makes it more of a shower height that attaches to the legs of the seat. It adjust the top and bottom do. The legs lay flat so it can lay in a bath tub as well.

The TAOS (Therapeutic Ambulatory Orthotic System) is a combination of an Orthosis and a mobility base. These two components work together to provide your special needs child the ability to flourish in an upright hands free environment. The orthosis ensures your child's legs and torso are kept in proper alignment so his muscles can be trained to work in the manner in which they were intended. The mobility base supports your child in a standing position, enabling him to safely explore his environment to the best of his abilities. Many special needs children are able to take steps independently for the first time when utilizing the assistance provided by the TAOS. Since we first started fitting TAOS units in 2006, we have been amazed at the benefit it provides to a very wide range of children and abilities. The upright activity and excercise children get while in the TAOS is a tremendous benefit to their health and well being.

Unlike a traditional pediatric walker, stander or gait trainer, the TAOS ensures that your child is in proper alignment while bearing weight. This is important, as prolonged weight bearing in poor alignment can lead to damage to joints because of unnatural loading.

I like that it is braces with a harness that attaches to an adjustable pole. It breaks down in 3 pieces to travel with easier. It also has head support pieces and seat pieces that can be added to it. I am very excited to see what my little man can do with this.
Update 4/11/12: My son got this about 2 months ago. Not sure how I feel about it yet. Take a lot to get him in it compared to the rifton. Kind of a pain to set up, I'm sure the more I use it the easier it will be. I think my son personally needs something to rest his arms on since he does not use his arms a lot. He tends to flop forward in it and not hold his trunk up. He has yet to take any steps in it...this might not be the best fit for my son, but other kids with more trunk control it may be perfect.

 Wenzelite Seat2Go: 4/11/12
The Wenzelite Seat2Go is a lightweight, padded positioning seat that has been specifically designed for children with special needs. This versatile pediatric positioning seat can be used on the floor or attached to a regular chair for tabletop activities and mealtimes.

The Seat2Go padded positioning seat is lightweight and easily portable for traveling away from home. Parents and therapists like the Seat2Go because it’s latex-free, adjustable for secure support, easy to use, and compact for storage and transport.

The Seat2Go is available in 2 sizes. The Small Seat2Go measures 8" inside WIDTH x 9" inside DEPTH x 12" inside HEIGHT, while the Medium Seat2Go is 12" inside WIDTH x 12" inside DEPTH x 14" inside HEIGHT.

We had a new headrest made and I padded it myself. Works much better for him. This is also the bigger size he has now.
Just got this in the mail for him yesterday. The seat usually run over $200 new. I was able to get it on Ebay for $100. I had to buy the head rest and leg abductor at full price..looked for them all of the web and got both for about $150..so this seat is one of the 1st things I paid for out of pocket (besides the Charleywrap)  and it was just over $250 with shipping. I was a little sad that he almost don't fit in it. The velcro on the shoulder straps is weak, if he pushes back it pops off. Not sure if they are all like this or if it is the fact that he probably needs the next size up or because it is used. Hoping to get a year out of this one and maybe tax time next year I can find the bigger one. He sits best in it at a table so he can prop his arms up which helps prevent some of the leaning he still does. It is great for extra support in a stroller, a solution to put in the back of a grocery cart to do shopping, going out to dinner, or a portable floor sitter or seat in general at friends and families houses when we don't have the wheel chair.
Benik Trunk Support:
Two-piece dynamic body vest is constructed of 3mm ventilated neoprene and is terry lined for comfort. Velcro® straps adhere to the Velcro®-sensitive material of the vest. Velcro straps at shoulders, sides and crotch provide for maximum adjustment. Once the Velcro® closures are adjusted, the vest simply zips on and off. The orthosis provides upper trunk support and proprioceptive input. The vest will provide warmth and added buoyancy during hydrotherapy and other water activities, but is NOT to be used as a life preserver. I also noticed on their website they have metal support bars that go in them we never had those though http://www.benik.com/peds/trunk/v-200
only picture I can find of him in it.
Jacob had one of these when he was about a year old. I am considering trying another one with the supports in it. He used to arch back alot and the therapist thought it might help pull him forward. I didn't like using it when he was smaller because it made him very hot, but now it might be a nice option to give him some extra trunk support without being as bulky and stiff as the Charleywrap he has.

Benik Hand Splints
He also still wears these thumb splint to stop him from keeping his hands fisted.

Special Tomato Soft Touch Sitter:
I LOVE the harness and wheels on the base. I do believe this harness ($29.99) could technically be used on the Tumble Form seat minus the crotch strap. It is a much cheaper solution to the horrible straps on the tumble form. I loved the base with wheels. This was one of Jacob's late birthday presents. $440 out of pocket from adaptivemall.com This site also has a great link to the pros and cons of the 2 different brand seats. http://www.adaptivemall.com/sptovstufo.html


Cascade Hindged AFOs

Dafo 2 Hinged Pf Block & Df Free Shoe Insert

Key Features Custom fabricated from cast Defined plantar surface contours Full wrap-around shell for flexible control of foot position and alignment Fully integrated padding Hinged ankle control Proximal posteriorblocks plantarflexion and provides additional medial/lateral stability

Work really well for Jacob allow his foot to stay at a 90 degree angle but he can also been his foot forward. There is a strap on the back that allows them to stay in a solid position.