Wednesday, April 18, 2007

Results of Tommy's OT/PT evaluations

I am so emotionally drained. Today was our IFSP meeting to add an OT and a PT to Tommy's treatment plan through our early intervention service. They had their reports of the evaluations they did last week. I was totally caught off guard when they both told me his motor skills and sensory skills are that of a 2 month old! I knew he was behind, but I never in a million years thought it was this bad. We now begin aggressive therapy in physical therapy and occupational therapy to work on his sensory issues and lack of gross motor skills. Once a week for one hour each until further notice....

I am physically tired from a lack of sleep that I won't ever be caught up on. I asked for respite care again today and I was told the paperwork had been filed and it was a matter of waiting to see if we qualify. Tommy has been coughing and wheezing all day. Ugh! Every time I sit down or start something (laundry, cooking, eating, showering) I have to suction him. If I had help just one day a week on a day I won't be in a clinic somewhere, I could take the boys for a walk, take a shower, catch up on a book, finish a blog entry in one sitting!

I always get worked up the night before cardiology clinic day. One little variation in his tests could mean bad news for us. It hasn't happened yet, and I stress out all the time about how long we have until the next surgery.

GRRR! Fighting boys again. Sooooooooooo tired of that nonsense too! Going to put the baby to bed and hide out in my room with the door barricaded.

1 comment:

Nancy said...

I am sending you some (((big hugs!))). I'm sure you should qualify for respite. I hope you get it SOON! When Miss Jess was 5 months old she had her first heart surgery which resulted in a stroke. We had to start all over again and she needed aggressive therapy too. I had to make sure that the therapists didn't over-work her and make her too blue, yet let them work with her enough that she would benefit from it.

Hang in there! I hope you get a break soon! Again, lots of (((hugs)))!

Diagram of Tommy's Heart Defects

Diagram of Tommy's Heart Defects
Double Inlet Left Ventricle with Transpostion of the Great Arteries