We also have had some medical appointments recently. I took Daniel and Christopher to the eye doctor. While we were there, I asked the doctor how likely it was that Daniel would lose his vision. He has optic nerve drusen which is a condition that can cause the loss of sight. I was told by a different doctor, a specialist, that this likely wouldn't happen until he was at least a young adult. As you can imagine, this is a lot for a mama's heart to carry. It isn't something that I've shared with him as there is no need for him to carry that weight as well. His regular eye doctor believes that it is not likely at all that he will lose his sight. Oh, I hope she is right! Continuing to pray that Daniel will keep his sight.
We also had Diabetes Clinic. It was a mixed set of information, but all in all a good visit. His numbers still aren't where they should be - on average and also his A1C had gone up a little bit. It is really discouraging to see that number when you are doing all you can to keep it low. It feels like a test and I just can't get that good grade no matter how hard I try. Then I wonder if I could be trying harder or doing more. I know some of you understand these feelings - even if it isn't the same issue.
He is higher on average than is optimal. They believe that he isn't getting enough insulin. This is most likely having an effect on his ability to gain weight. I knew this was true before diagnosis, but didn't even think about it happening now. :-( He is very low on the charts for his weight (though none of mine are high on it!). We've adjusted his base rate of insulin and thus far he does seem to be having better numbers. The goal in the past was to really keep him from having lows. Hopefully we can tweak this now and get him in a better spot.
We need to do some testing of this new rate by fasting through various meals/snacks and more frequent testing. I am planning on starting that *after* we get through birthdays! Should be next week.
As we finished the appointment and were checking out, we could hear loud noises. We went to see what was happening. As we approached the lobby, a woman eagerly invited us to join in. There were two young men there from Africa who were drumming beautiful rhythms. There were many additional drums and the children were encouraged to play with them. Joshua told me that it was much harder than he thought it would be to make different sounds based on where you hit the drum and with which part of your hard.
It is a sweet think to see people working to encourage children who are dealing with more than they should be in life. I'm thankful for these men and women who find ways to brighten their days!
As always, we have much to be thankful for! Tomorrow is a busy birthday day! Will post more on our sweet boy tomorrow.
Blessings
Leslie
His A1C was
Posts
