Yesterday was a very long day but we knew it would be. Most everything ran as scheduled so we were able to make all the appointments.
Her first appointment was for her eyes. She did great as always. We have noticed that she seems to reach all around objects not directly at them at times. It seemed better when I would put my readers on her that she could reach right at them, but maybe just coincidence. So she does have some vision loss but the dr. says we will recheck in 6months. The scaring is still there on the left eye with too much dryness. Also her right eye is too dry. We were doing ointment when she slept but now we need to wake and doing it more during the night while she sleeps and several times daily. This is because Annabel sleeps with her eyes open and so the dryness occurs. This is a very common occurrence with Trisomy 18 babies sleeping with their eyes open. When I say open, not fully but you can definitely see her eyeballs when asleep. The goal is to keep them from becoming so dry to cause more damage. This will also be reassessed in 6 months to see if there is improvement. She agreed that if all possible she needs to not do the bi-pap due to the air that escapes under the mask (no matter how well it seals) it causes harm to her eyes. With everything there is a trade off with her. At this point the nasal cannula with oxygen is keeping her from having too many episodes of not breathing.
After this we had to do surgery admission for Friday and then anesthesia pre-admit. After this we had to go for the Kangaroo team to place her IV for sedation for the two MRI's. This save much poking and proding as with their ultrasound machine they are able to get a good vein and she is such a brave little girl. You can see the tears in her eyes and whincing with pain but she never once cries out. Of course watching her make me sad that she is so strong. It is obvious she know that crying won't get her out of it. Love this girl so much and I probably need to practice some her strength daily.
Then finally for the MRI's. We will not have results til later in the week and maybe not until we have the surgery. They are not expecting a normal brain MRI, just because they say they know there are issues. (What does this mean???) The spine they are just making sure since the last MRI was done in 2007. She did have several episode of not breathing as we expected but were totally manageable with oxygen and intubation. She was tough to wake but she had not had much sleep the two nights before, just because she didn't want to sleep. Once she woke she made the entire trip home without sleeping.
Thanks to all for the calls, prayers, emails, text and total support for Annabel. I never want to take any surgery lightly but Friday's surgery from what I understand will not be near as hard on her as her surgery in June. The issue is always being put to sleep but God continues to hold her tightly in his hand when we can't and have no control!!! Will keep you posted and hoping that your week to this new year goes well.
