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, 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.

STEP 2 LOFT BED
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
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2 comments:

  1. UnknownNovember 12, 2014 at 10:39 AM

    I stumbled upon your blog while looking through resources for quadriplegic children. Do you have any resources you particularly like for finding voice activated toys and anything interactive for quadriplegic children. The child I want to help is quad by injury and trying to adjust to a completely new world!

    ReplyDelete
  2. UnknownMarch 23, 2016 at 7:01 AM

    Thanks for sharing we are looking for a safe option for my brother in law at my house. He's almost 4 and has quadriplegic spactic cp

    ReplyDelete

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