For the past 24 hours, I have had the stomach bug from hell. This morning I was so miserable that I basically forced my husband to stay home to take care of the kids. I was so bad that I couldn’t figure out how I could take care of Hannah during the day. I ended up sleeping until 12:30 pm today! (But I am starting to feel much better now).
Because I wasn’t feeling good, Daddy took Hannah to occupational therapy. She did not want to have ANY of it. From the moment that they took the paci out of her mouth, she apparently went hysterical. They tried walking her around the offices, trying to distract her. It could have been because she was just tired since she had just woken up or it could have been a change in routine with Daddy taking her instead of me, who knows. Needless to say, that didn’t go well.
When we were at the NIH a couple of weeks ago, we met with their PMR (Physical Medicine and Rehabilitation) physician, OT, and their PT. Their recommendations for therapy were as follows… 1] PT at least once a week (which we have), 2] increase OT to at least twice a week to incorporate fine motor skills along with the feeding issues, 3] add Speech therapy (ST) once a week because of the oral issues and vocal cord paresis, 4] add vision therapy through Early Intervention, and 5] continue developmental therapy with ECI.
That comes out to a minimum of 6 therapies of week but optimally 8. This doesn’t include her Cerezyme infusion treatments downtown every other Monday.
She is just 12 months old. I know the goal is to try and teach her as much as we can now while she is very suspectible to learning because we know there will be a point that it won’t be like this. But that is a LOT of therapies every week.
I feel like I need to determine what would be the best compromise for everyone. I mean, I don’t want to short her with the services she needs, but I also don’t want to overwhelm her. Also, I still do have the other two kids to take into consideration, but fortunately school starts in a few weeks.
I don’t know what would be the best compromise. This is something I need to work out.
Sounds so rough, I’m sorry you’re family is going through this! You are doing a great job for her even though it doesn’t always feel that way.
.-= Little Lovables´s last blog ..Oh Blue, How My Heart Loves You =-.
I’m sorry you weren’t feeling well and glad to hear you’re feeling better. That is quite a lot of therapies. How many hours a day would that be? You’re right in trying to consider a compromise. Can some of it begin when school starts or something? Gosh, I hope there’s something you can work out that will be effective for Hannah and work for your family as a whole as well.
.-= Petula´s last blog ..Critter city =-.