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, October 24, 2013

I've been stroller shopping AGAIN! Advance Mobility (Baby Jogger) Liberty

I have a small list of expensive items I have been saving up for for Jacob...most I was planning on buying by income tax time depending on refund amount etc. I have been drooling over a Liberty stroller which I think I have mention on here before. I also need to get him a special needs car seat. I heard insurance does not pay for them, but we seen a new physical medicine doctor today (or old one is moving out of state) and she said she has seen them covered. So tomorrow I make an appointment for Jacob to see the seating specialist to look at his wheel chair and for someone to go over equipment option with us because he is starting to outgrow some equipment. We are for sure in the market for a new stander. Not sure if we will go with the Tumble Form 2 again this time.

While browsing Facebook special needs equipment sell pages I seen someone list a Liberty stroller. I was 2nd in line for it and the 1st person passed. I got it and I am REALLY THRILLED about it. It is bigger than I expected and is not tiny and compact like my single baby jogger city mini GT, but most of the features are exactly the same. Similar harness, same quick fold release in the seat, adjustable handlebar. It does have air filled tires so it rides better. It is heavier and more awkward to push as well, but I think that is just getting used to it. I was able to push it easily at the park through the mulch with 1 hand while holding my toddler with the other hand. It has more of a reline in the highest position and it does NOT lay as flat as the baby stroller do. It is still WAY BETTER than the Special Tomato stroller and much larger and better than the convaid we tried as well. Since the stroller is a little big for him he does seem to need some kind of side supports I need to add. Sure they make some for some high price...I will make my own.  He like to lean left. He did okay with the Snuggin Go Too insert, but that is a little to flimsy for what he needs.

My next purchase is to go up as size on his special tomato seat. I really LOVE that seat. It can be used in some many situations for a special needs child. I actually might use it as the stroller insert eventually when I have 1 to keep at home. We have had our special tomato chair for awhile now and if that thing was to break in 1/2 right now (I'd die) but would say I have well got my moneys worth out of it already. I use it for another special needs friend I take care of who needs even more support than Jacob so it is used A LOT.

*  We us it at the park in special needs swings. My little friend I watch likes to curve his back forward and will bang his head even in the swing at the park so the size 2 seat fits perfect in the swing to give him a soft secure place to swing.

* We use it in restaurants so he can sit at the table with us and also at home for when we try oral feeds.

* I use it in the back of shopping carts and if I am lucky enough to find the 2 seater shopping carts that either look like a car or just have the bench seat I am able to strap the seat to those since it has straps attached to it. This saves me a lot of grief from him constantly falling over in the shopping carts that he can still fit in and makes shopping much easier.

* We travel with it and take it to friends' houses even without the base it gives him a secure place to sit even if we place it in a recliner or the couch. Jacob is very active and kicks and wiggles his body to the point of making himself fall over and eventually end up on the floor if not strapped to something.

At our appointment today at Nemours in Orlando I was happy to hear the physical medicine doctor there Dr. Reid does PHENOL. We were seeing the doctor at Arnold Palmer and they have not been able to do phenol in a year. Jacob is not really at a point of needing phenol again right now. He has a few tight muscles but has full range of motion. We did botox on 9/26 and haven't notice any real improvements. I think he will need phenol again in the next 6-9 months though. I was really relieved to know I had it as an option again. I was ready to drive hours away for it. She was wanting to increase his baclophen again in which I told her no. I'm not a fan of my son being so snowed on meds he is asleep or 1/2 on conscience all day. Our medication routine is working okay. I would like to see him a little less tight, but taking away his alert time during the day is not an option for me. She mentioned giving him a new medication that I had never heard of I think it was Zanaflex.. She told me it was less sedating than Baclophen, but Dr. Google has told me otherwise. He also needs blood work on a regular bases to check for liver failure why on it. Not sure I am willing risk liver failure....but hell all the other meds have side effects too.

1 comment:

  1. We are looking for a new stroller (and carseat) for our one year old who is spastic quad. Do you have any suggestions for little ones?