Friday, December 16, 2011
Saturday, August 27, 2011
Friday, July 15, 2011
Guess I'm venting a bit, its been a stressful past month.. But Gabriel is doing good (knock on wood), hes a happy chubby little guy and just an absolute joy. I thank god that although he has poor muscle tone, he doesn't seem to have any other issues, like with his organs and such. Feeding is also getting better, hes more willing to try new foods, though he doesn't eat much of it, he is trying, so for this I'm very happy!
BTW the wheel chair will take about 4-8wks to get, maybe I will be more prepared for it by the time it arrives..
Friday, May 20, 2011
She told me that sometimes this can be normal to urinate crystals, but she would need to analyze his urine to see if this is crystals or stones or uric acid.. So she sent us home with an urine collection kit, I will collect Sunday night then send to the lab Monday. We will also be sending the white stuff I collected off his skin. She said the results would take about a week, but believe me I will not be holding my breath. According to what she finds will determine the next step, which would probably be a renal ultrasound.
I'll try to keep posting as new results come in.
So the nurse called back in about 10 minutes, hmm, I was right (as usual lol). The myotonic dystrophy was the blood test, she said that this is negitive, and she found the finalized results of the muscle biopsy and the results for the mitochondrial test was back. She said she would have to talk it over with the dr before she could give me the results. Of course the dr is in surgery all day so she would have to call me back tomorrow.
I asked if she could just read me the results from the report, she wouldn't have to explain what they mean. So said sorry she couldn't.. So I anxiously awaited for her to call today. I decided to give her a call at 2:32pm, guess what the freakin answering service picked up, the office closes at 2:30pm! I was so upset to say the least. So I tried a last ditch effort and call the general ped office, talked with the nurse, she was sorry to say that there access to the All Children's website would be down until Monday afternoon.
So you know I'm going to be calling bright and early Monday to get some answers.. Just a hunch, but I'm guessing he does have the mitochondrial related congenital myopathy since the nurse was so adamant she had to the Dr before giving me the results..
And so the wait continues...
Another thing I noticed is that now he is getting better at putting his binki in his mouth, I was really wondering how he did it.. For instance, he would be laying in the bed, binki near by, but not in his mouth. So I watched how he did it one day. He would randomly pick it up, put it to his mouth, and like the first 20 times he would have it the wrong way, so he would bang the plastic back to his teeth, realize its not right, drop it down on the bed and pick it back up and put it to his mouth. He would do this repeatedly until he got it right! You could see how proud he was, he will chew the binki back and forth and smile to show off like "Look Mama look what I can do!". He is was patient little man, rarely gets frustrated when he is doing things himself, like playing with toys. But I you try to make him do something, oh man does he get mad, and he'll let you know it lol!
Heres a link to the you tube video of him clapping, so cute!
Wednesday, May 4, 2011
Finally got his vest to help his posture, and got the shorts to go with, this will help him from keeping his legs wide open, and he got the soft splints.... love them all! He seems to enjoy them too! He's got the best therapists around, I always look forward to wed, his therapy day!