Great news from Blake's dr. His kidneys are fine. So far all three tests we've had have come back normal! I am hopeful that he will be one of the few kids that don't have any health issues related to PTLS.
He was so funny last night. We had the music on and he was walking around the house dancing, but kind of half-dancing and half-walking. I told his therapists once sometimes he reminds me of that episode of Seinfeld where Elaine thinks she can dance, but just looks like she's having some sort of fit? LOL. No really, he actually does have rhythm; he's just not able to coordinate all his movements yet. I will not be surprised if he grows up to be a break dancer or something. He is a dancing machine.
Monday, September 22, 2008
Friday, September 19, 2008
Blake had his renal ultrasound yesterday. We were there early and they got us in right away. It only took about 15 minutes. Blakie was good during the first part because he got to lay on his tummy facing me, but when he had to lay on his back he cried and cried and wiggled until they were done. Good thing it was a short test. We will get results in 2-5 days. I am optimistic that this test will come back normal and we will be 3 for 3 (heart, hearing and kidneys.) Our next appt. is opthalmology in January, so we will have a much needed break until then.
Other than that he is doing great. He is getting used to his SMO's (orthotics) although we need to get them on quickly or he gets irritated. We are working on climbing in physical therapy and he is doing a lot better with steps, curbs, etc. We have been having trouble with insurance so he has not had any feeding therapy for the past few months, but he is still doing well with his eating. Although he is still very delayed with speech he has started saying 'yeah'. Every time we ask him something the answer is "YEAH!" It's really cute. We are still fighting to get him speech therapy. Even though this is his biggest obstacle and therapy is desperately needed, it is one of those things that are rarely covered. The sad reality is that he may have to wait until he is 3 and in the school system before he gets any speech.
A friend came in to work tonight with her daughter, who is 5 days older than Blake. She was speaking full sentences and telling me how big she was and eating grilled chicken. It was really hard for me to see. I am so used to Blake's delays that it has become our new "normal". Just when I start to think that all 2 year olds are where Blake is developmentally, I'll see a typical child running or eating steak or singing, and it is like someone slapped me. I think, why us? Why our Blakie? It's not fair... And then I feel guilty for feeling like that. Blake has come so far and I am so proud of him, but he has so far to go. Why does it have to be so hard for him and so easy for others?
Until tonight I thought that I had accepted all this; that I was at peace with this new "normal." I guess it will take a lot longer than I thought it would for my heart to heal. I'm going to go tuck him in now, and rub his head like I always do, and thank God that we have him. And tomorrow when he gets up he'll smile at me and make me feel better, like he always does.
Other than that he is doing great. He is getting used to his SMO's (orthotics) although we need to get them on quickly or he gets irritated. We are working on climbing in physical therapy and he is doing a lot better with steps, curbs, etc. We have been having trouble with insurance so he has not had any feeding therapy for the past few months, but he is still doing well with his eating. Although he is still very delayed with speech he has started saying 'yeah'. Every time we ask him something the answer is "YEAH!" It's really cute. We are still fighting to get him speech therapy. Even though this is his biggest obstacle and therapy is desperately needed, it is one of those things that are rarely covered. The sad reality is that he may have to wait until he is 3 and in the school system before he gets any speech.
A friend came in to work tonight with her daughter, who is 5 days older than Blake. She was speaking full sentences and telling me how big she was and eating grilled chicken. It was really hard for me to see. I am so used to Blake's delays that it has become our new "normal". Just when I start to think that all 2 year olds are where Blake is developmentally, I'll see a typical child running or eating steak or singing, and it is like someone slapped me. I think, why us? Why our Blakie? It's not fair... And then I feel guilty for feeling like that. Blake has come so far and I am so proud of him, but he has so far to go. Why does it have to be so hard for him and so easy for others?
Until tonight I thought that I had accepted all this; that I was at peace with this new "normal." I guess it will take a lot longer than I thought it would for my heart to heal. I'm going to go tuck him in now, and rub his head like I always do, and thank God that we have him. And tomorrow when he gets up he'll smile at me and make me feel better, like he always does.
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