Friday, August 22, 2008
No New Is Good News, Right?
Well I am happy to report, although that hasn't always been the case with us, it is right now. Alec is doing really well and speech is improving very slowly, but a definite improvement. His swallows have become so powerful that his swallow therapist advises to put the g-tube placement on the back burner. He is making really good progress and alot quicker than he anticipated. He is on an all puree diet and needs no tube feeds right now. We were advised to just drop an ng tube when Alec needs his meds, he's on some really important ones for blood pressure and stinky steriod, but he needs it and for some hydration. Anyhow, after he gets his meds pull it out for the day. He was very excited to hear this, Alec that is. I am just waiting on the supplies to do so I might need another script from his Dr. for daily NG tubes.
He is so anxious to get back to school, he packs a lunch box everyday, he is so funny. Oh and some other good news, his numbers are coming up, yay!! His LYM read 1.06 and normal range is 2.5- 3.5 we are almost there. We will probably run a t-cell check on our next clinic visit in 3 weeks, yup 3 weeks, can you believe it. It's exciting and sad at the same time, Alec likes to see his clinic friends, Alyssa, she always gets the, "Can I have____________ questions from Alec, it's so funny. Then there is Mr. Rob- who makes a fingerstick not so bad, and Jan, Faye and the HEMOC nurses, and all of our HEMOC friends.
Alec continues to get his herbal supplements as well. I really feel it's helping his whole demeanor pick up. He plays so nicely now, and enjoys it.
There is always some depressing days, like when we were on our way home and having this wacky weather there were double rainbows in the sky and Alec couldn't see them. I snapped some pictures with my phone, but he still has a hard time narrowing in on it. He has been complaining about his vision more these days, he gets frustrated with it. This morning Sesame Street was on as always, our 7-8am ritual and we paused the TV, ya paused that alone is weird, but just to see if he could see the number on the TV and it was 4 and he got it. So it's so hard to understand what he is seeing.
Well enjoy some pictures, till next time keep the faith.
Love,
Amy
He is so anxious to get back to school, he packs a lunch box everyday, he is so funny. Oh and some other good news, his numbers are coming up, yay!! His LYM read 1.06 and normal range is 2.5- 3.5 we are almost there. We will probably run a t-cell check on our next clinic visit in 3 weeks, yup 3 weeks, can you believe it. It's exciting and sad at the same time, Alec likes to see his clinic friends, Alyssa, she always gets the, "Can I have____________ questions from Alec, it's so funny. Then there is Mr. Rob- who makes a fingerstick not so bad, and Jan, Faye and the HEMOC nurses, and all of our HEMOC friends.
Alec continues to get his herbal supplements as well. I really feel it's helping his whole demeanor pick up. He plays so nicely now, and enjoys it.
There is always some depressing days, like when we were on our way home and having this wacky weather there were double rainbows in the sky and Alec couldn't see them. I snapped some pictures with my phone, but he still has a hard time narrowing in on it. He has been complaining about his vision more these days, he gets frustrated with it. This morning Sesame Street was on as always, our 7-8am ritual and we paused the TV, ya paused that alone is weird, but just to see if he could see the number on the TV and it was 4 and he got it. So it's so hard to understand what he is seeing.
Well enjoy some pictures, till next time keep the faith.
Love,
Amy
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