I am back, and (sort of) recovered from our very long trip to Cinci on Tuesday. I had to be driving at 5 in the morning, and I didn't get home until after 7:30. That is a VERY long day for this homeschool mama who doesn't have to move very fast in the mornings. Forget wondering how I do "it" with 9 children, I don't know how anyone gets their children on the bus by 6:30 in the morning.
Anyway- we were off on time. I take an older child each time to help me with Mercy in the car, etc. So this time it was Emma. She thought it was way cool to be getting up at 4:40 in the morning. I wasn't so thrilled since I had woken up to feed Bethany at 3:30 and not gotten to sleep again.
We had some pretty bad weather on the way up, and things were pretty slow. So I arrived to our first appointment a little late. But it didn't matter since the eye doctor had us wait almost two hours anyway. Luckily, since they are a children's hospital, the waiting rooms are really fun.
All was well with the Contact Lense Guy. We have found a lense which works well. It is staying in her eye, and seems comfortable. So he was pleased and said we should start patching her other eye as much as possible. This forces the brain to use the bad eye. Yesterday she was able to wear it for several hours. The hope is that maybe she will not need glasses forever. We'll see.
Then we had another hearing test. These are repeated every two months or so, to follow her development in the left ear. This one in specific was to be a baseline before putting a tube in her ear next week to see if that alleviated any blockage enough to improve her hearing. They were able to do a test she had not been able to do before (since she is getting older) which indicated that her hearing loss is not merely a blockage (the hemangioma blocking the ear canal), but that the hearing loss is permanent damage to the nerve. This is not really surprising as the hemangioma wraps around the nerve. So on the bad side, she will only have partial hearing in the left ear, but on the good side, we found it out before sedating her unnecessarily next week for a tube which would not make a difference.
Since she hears fully on the right side, her speech is developing as expected, so this will in no way pose any problems except maybe we will have to be sure we are not talking to her on the left side. No big deal, really, in the big scheme of things. It is too early to be able to tell if a hearing aid would help, and she currently doesn't have enough of her ear to even wear one anyway, so that will have to be explored when she is older, and the plastic surgeries are done to restore her ear.
The hemangioma doctor was really pleased with the way the hemangioma looked. We saw one who had not seen her for three months (not our primary doctor), and he felt that the hemangioma was smaller. (You were right, Oma and Papa Pete!) He said to try to reduce the prednisone from 0.8 ml. a day to 0.7 ml a day. The surgeries to start repairing her face are thought to start sometime in the spring, and they would like for her to be off the prednisone before that starts. He did say that we will probably see some growth again as we wean off the prednisone, but that will go back down again usually. I have so enjoyed the past few months of not having it grow. I will be so glad to have the whole thing done sometime in the future.
Since the ear tube surgery was canceled, we don't have to go to Cinci again until next month when we will go on Monday afternoon for a hearing test, (I think we need to schedule an eye appointment too to see how the patching is helping her...) then on Tuesday for an MRI, and to see the hemangioma and ENT doctors again.
So that is where we stand as of January on the Mercy front! Have a great day!
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