Life with CP

A family's story living with cerebral palsy in Chicago

Life with CP - A family's story living with cerebral palsy in Chicago

Wheelchair or stroller debate #2

I was just looking back through my posts and found one from a year ago. I can’t believe that we are still in the same situation as far as how we will transport our son. Currently, he is in a MacLaren fold up, but his toes are almost touching the ground. Due to his high tone, he rarely is able to keep his legs bent and resting on the foot rest. I really thought that we would be past this issue by now???? I had hoped that by now, he would be walking longer distances. Jacob’s scissoring was really terrible towards the end of spring and his last series of botox shots had not worked at all. Our doctor suggested surgery, which we had 6 weeks ago.
He is walking so well now- I am hopeful that we can continue to work endurance. As a matter of fact, a few days ago, we went to the store to fix a pair of glasses. I found parking 1/2 a block down the street and we walked to to store. It takes a while because he gets so distracted with cars, dogs, and babies passing him by. We rested and ate a cookie at Starbuck’s next door before walking all the way back. This was the first time that we have left the “just incase of fatigue” stroller in the car! I’m so proud of him!!!
While we were inpatient at Rehab Institute of Chicago, our therapist had lent us a wheelchair to try out. I was very much against one in the past, because he has the ability to walk so well. Besides the “stigma” that wheelchairs often have. But I could not have been more wrong!!!! His posture was upright and was able to make eye contact with his peers, rather than being cramped up into our little stroller. It also provided him with more independence that he so much needs, being 3 years old. After only a day, he got the hang of rolling himself around. Jacob was able to explore his environment so much more than being locked into his stroller. He rolled himself over to the table, as well as out in the hall. We have an appointment to be fitted for one in a few weeks and I cannot wait! I never thought that he would have been able to roll himself independently- and if we never got the chance to try it- I think we would still be looking for another stroller.

Category: Uncategorized
  • Kari Jefferson says:

    Hello, while I realize your blog is from 2009, my husband and I are in a similar situation with one of our sons. I just read “your story” and while we have many similarities, there are also many differences. As you, we are truly blessed to have our sons. Our boys were born at 23 weeks and both have CP. While one can walk, the other cannot. We are struggling with stroller vs wheelchair. I just read your blog and I am wondering what type of wheelchair you ended up with. As our son continues to grow, I am having more difficulty with lifting, carrying him or if we just want to go for a walk, he doesn’t have the stamina to walk that far with his walker. So, I have been searching all over for the “right or perfect” stroller for him. Your comment on seating upright in a wheelchair and cramped in a stroller are so true. Our son is low tone though and cannot walk without his reverse walker. I could go on about my sons, as I am sure you can about your Jacob. They all are amazing individuals. Thank you so much for your time. Kari

    March 23, 2011 at 8:54 pm
  • Natalie says:

    Kari… Yes, I cant believe how long it has been since I have been on my blog. Sometimes, its easier just to stop or give up. We still have no real diagnosis or answers why Jacob has CP. Our inquiries into the genetics field has turned up nothing. But I have recently connected with some new CP families and feel inspired to write again.
    Ironically, we have been measured for a new wheelchair. The chair that we got was apparently archaic. We also got it off of ebay, since our insurance wouldnt pay for it. The one that we have recently been fitted for was “Tsunami- Little Wave”. Its great because they customize it the their needs.
    It’s so funny to watch the stares from people while he is in the chair, especially from kids. They often come up to him- Im talking a few feet away, and stare at him. But when I try to initiate conversation between the child and Jacob, they warm up and start asking questions. Funny.
    Best of luck to you and your family!

    July 22, 2011 at 1:04 pm

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