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, August 28, 2012

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

Tuesday, August 21, 2012

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.

Thursday, August 2, 2012

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.