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, February 28, 2012

New Toys for Jacob

Yesterday was a busy day. We live centrally between Tampa and Orlando, FL. 1st we drove EARLY in the morning to Shriner's Hospital in Tampa. We spent 4 hours their getting Jacob's long leg braces finished up for us to take home. They have AFO's at the bottom and from the knee joint to the hip is a metal brace that wraps around his waist. Haven't had the oportunity to put them back on him since the fitting but I will post pictuers of everything at the bottom of this post as soon as I have a chance. Also a really nice things they did for us was GIVE us a pair of Answer 2 AFO shoes! Heck yeah! I was pretty excited about it. :-)

After we left Tampa around 1pm by the time we got home we had time for an hour nap before the drive to Orlando. To another orthodics place. We FINALLY got to pick up his  TAOS device! It definately looks a lot more complicated than I thought it would be. Has the same kind of Long leg brace frame I described above except for AFOs at the bottoms their is a pair of high top shoes that have a metal thing that locks onto the braces. While we were waiting out the rain yesterday we took it over to a friends house that lives in Orlando and tried him in it. I'm not  quite sure we have master putting him in this thing right he did take a few tiny steps, but he is also not used to walking in shoes....I have been excited for this thing for months. Now I am not sure if I am more excited to put him in his Shriner long leg braces in the rifton or the TAOS device..I have pleanty of time to play with them today so we will see...

Sunday, February 19, 2012

Videos of Jacob in the Rifton Gait Trainer



This video was taken of Jacob at 14 months old.



This video was taken of Jacob about 27 months old.


Jacob is currently 2 years 7 months old. He still is hit or miss in the gait trainer. Some days he will walk toward the TV 4-5 times in a row. Other times he will just stand in the same spot of hours. He has walked in this gait trainer much better than in the last video, but  I can never catch it. For example, the other day I moved him in it to the other side of the room so he had a longer distance to walk (he only walks to toward the TV) before I had to back him up again. He hauled butt across the room toward THE WONDER PETS the fastest I have ever seen him move those little feet. I back him up and he does it again. He is laughing the entire time. I decide to go get the camera. he looks at me (which he rarely does when the TV is on) He laughs at me turns his attention to the TV and never moved the walker for the rest of the day LOL I think he knows exactly what he is doing. I can't wait to get his TAOS system hopefully next week!