We have had a busy week. It started off with an appointment to the cardiologist (all is well, still can't figure out what happened.) Next we visited Johnsons Orthopedic and he got fitted for splints for his arms. If all goes according to plan, he will get the Botox shots next week, they take approximately 5 days to start feeling the effects, and in that time the splints will be ready so that he can start wearing them... that is if it all works out.
We also visited CCS and he got fitted for his custom wheelchair (it will take anywhere from two to three months to make.) Billy (Dad) was excited because we got to choose colors, etc. We also got an evaluation from the Occupational and Physical Therapists from CCS (the experts.) These are the therapist that will follow him till he is 21 years old. In a couple of weeks they will come with the vendor to assess the house and see what other equipment is needed. Yay!!!! Billy Boy will finally get to take a shower (not just a sponge bath, which by the way, THANK GOD for Rachelle and Mom who come and help Billy and I with bath times once a week.)
Monet received her report card today... all A's. "What did you expect?" her teacher says, "She's perfect!" Monet (and us) have been handling the situation we are in a little better this week. She reads to him, watches TV with him, she even took a nap with him. It's been a lot better (emotionally) this week (I no longer cry every night), although I am physically drained. Hopefully we will figure out Billy's pain soon and we wont have to listen to his cries of agony anymore. Poor baby!
We also visited CCS and he got fitted for his custom wheelchair (it will take anywhere from two to three months to make.) Billy (Dad) was excited because we got to choose colors, etc. We also got an evaluation from the Occupational and Physical Therapists from CCS (the experts.) These are the therapist that will follow him till he is 21 years old. In a couple of weeks they will come with the vendor to assess the house and see what other equipment is needed. Yay!!!! Billy Boy will finally get to take a shower (not just a sponge bath, which by the way, THANK GOD for Rachelle and Mom who come and help Billy and I with bath times once a week.)
Monet received her report card today... all A's. "What did you expect?" her teacher says, "She's perfect!" Monet (and us) have been handling the situation we are in a little better this week. She reads to him, watches TV with him, she even took a nap with him. It's been a lot better (emotionally) this week (I no longer cry every night), although I am physically drained. Hopefully we will figure out Billy's pain soon and we wont have to listen to his cries of agony anymore. Poor baby!
1 comment:
It is my pleasure! It gives me an excuse to spend time with Billy Boy and to see all of you. When Billy is able to take a shower you are going to have to find something else for me to do so I can come see my little man!
Love you all,
Rachelle
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