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, April 12, 2016

Large Rifton Gait Trainer

Anyone that is on FB and hasn't subscribed to any of the special needs equipment groups should check them out.

Jacob got a medium gait trainer when he was 3. It was paid for by my private insurance company. Since then I have left my job and my husband's insurance sucks. Jacob is now on CMS/ Pedi-Care  (Florida) I have been told it is hard to get gait trainers covered unless they can navigate them through a room. Well Jacob can bear weight and walk forward ina straight line, but other than that is is more just something for him to sit and stand in whenever he feels like it more than walking. I lock the wheels in place and let him stand. I put slack in the seat so he has to bend his knees a little to sit when he needs a break.  I wasn't even gking to bother trying to fight insurance for the next size up, because they just paid for his crappyou standard that I hate just over a year ago. This being said...I happen to be causing through my FB news feed a few months ago now and someone in Georgia was offering 1 for FREE! I happened to be waiting for income tax time to spend the $1400 to buy the new frame out of pocket.

You better bet my sister and I took a weekend to drive 8 hours each way to Georgia from central FLoria to pick it up for him. Thank you to the very generous family that gave us this wonderfulink gift! We passed our medium gait trainer to another family I know personally. His new pacer just fits him. He will get years of use out of this. I am thrilled there are people out there willing to pass on their equipment.

We recently were fitted for a pair of HKFO to help with how his legs turn out and give him better positioning, but 2 appointments later they still don't fit right.




6 comments:

  1. Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
    Knee Immobilizer Brace

    Keep Posting:)

    ReplyDelete
  2. That's Great Jennifer,
    Jacob is so cute. May god bless Jacob.

    ReplyDelete
  3. That is Great Jennifer, Jacob is so adorable. May god favor Jacob.

    ReplyDelete
  4. Hi Jennifer,
    I just found your site. Jacob has a lot in common with my 17 year old son.

    I finally gave up on AFOs and use these Memo shoes with my son instead: http://ablegaitor.com/index.php?route=product/product&path=36&product_id=118

    They have a rigid support bar inside the shoe (on the back of the ankle). The leather does stretch out after a lot of use, but are very well made and so much more comfortable and easy to deal with than those stupid AFOs that always have rub points. My son used to wear AFOs for stander time (to keep better allignment) and his Memo shoes for walking (to give him more movement). Now, he just wears the Memo shoes.

    Also, Convaid has wonderful customer service. You should call them about the stretched fabric on Jacob's wheelchair. They may offer a fix for it.

    I would like to privately email you or talk to you sometime. I have a lot of equipment experience and would love to pass on some of the things I have learned.
    Sandi

    ReplyDelete
  5. Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
    cp chair

    Keep Posting:)

    ReplyDelete