As Sebastian gets older, the need for him to become more independent and mobile becomes increasingly obvious. Sebastian enjoys jumping and taking small steps forward with the help of his mama or daddy, but he cannot do these things on his own. Sitting and playing with toys is also a challenge, as he cannot sit up or manipulate toys on his own. There are certain types of equipment that can help Sebastian achieve these things while building up his strength. Unfortunately such equipment is not covered by our insurance. As we raised money this past summer for Sebastian’s alternative therapies, we are back at it again with a new fundraiser (details to follow).
When Sebastian was 6 months old, his therapists from London recommended we get a special seating system to help him sit in a stable position to allow him to learn to use his arms and hands to eat and play. Had we still been living in London, we would have been able to get that equipment paid for through the NHS. Because we are living in Cairo, this is not an option. The cost of purchasing and shipping the equipment was impossible for us.
Using adaptive equipment is a philosophy for some. His physical therapist thought we could modify a high chair for Sebastian rather than get him this special seat. As Sebastian was only 6 months old, I will be honest and say that I did not want to believe that my baby needed a special seat to do things. I was not ready to accept that so early.
Looking back, I think that there are still pros and cons to the adaptive seating system. Giving him secure, supportive seating for eating and playing would perhaps enable him to use his arms and hands more confidently. But if this seat supported him so well, would it enable him to build up those trunk muscles that he needs to sit and play on his own on the floor? I wasn’t willing to place Sebastian in this seat from the beginning. Sometimes now I wish we had a seat like this because as he is getting bigger, the high chair we have is not supportive enough, even with modifications on our part. I think partially this is because we only have access to certain things in Cairo. While we were in the US, we used a high chair that was very supportive with the modifications we made.
We believe that Sebastian is full of potential. Through research and discussion with other professionals, we work to find the best ways to help him reach his potential.
Here are some pieces of equipment we would like to get for Sebastian now: click on the links to see photos and more information.
Gait trainer: wheeled walking frame with armrests and upper body support.
Seat to Go: lightweight, padded positioning seat for children that need support while sitting on the floor, at the table or at play. Can be used at home or when traveling (which is very important for us since we need to travel long distances to see our families).
Second Skin: custom-made medical pressure garments and splinting.
The reason I think the gait trainer is so wonderful is because Sebastian can already stand, jump and take steps forward, but with upper body support. And these are things that he finds very fun. I do them as much as I can with he but they are hard on my back and my arms get tired. I also want him to gain more independence from me. I want to see him walking towards me with a smile on his face rather than always looking back at me through the mirror we do our exercises in front of. Developmentally, he is at that age where he really wants to move around but his body is keeping him from doing that. I believe he will be able to walk, at least with the help of a walker. But I see the gait trainer as a step towards that independence as he continues to improve his upper body strength and posture.
As for the seat to go, this is a more affordable and transportable option for independent seating for floor play and possible eating while out and about. I don’t know if it is right for Sebastian. We will be taking a trip over the holidays which will allow us to try one of these seats out and see if it would work for him. If not, then back to the drawing board.
I learned about Second Skin from a blogging friend whose son uses one of the suits. He has a similar kind of CP as Sebastian. I have contacted the company and am working towards when we can be in one of the locations for a full assessment to see if Sebastian would benefit from wearing one of these. It would build strength in his trunk and help him with more purposeful movement.
Sebastian’s needs will change as he grows and his abilities develop. With that will come modifications or new equipment. But we will take it one step at a time.