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.

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.

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