It was a very busy week... sorry I am late not our usual Sunday night. We had all the cousins over, the kids had a great time, we laughed, we ate, and everyone went home.
Amber started last week with an easy Monday but on Tuesday we are up bright and early. Tuesday we met Dr. Zadeh, genetics. She had nothing new to say, just that all the syndromes they could test her for, they've tested her for and it's all negative. They will have to wait to see how she continues to grow and develop to attach a syndrome to her. The next appointment will be in six months. She did say that anything this syndrome could have caused it has already done so, there should not be any new developments due to what she has.
On Wednesday, we saw Dr. Sami, Ophthalmology in Orange. He saw that her right eye is still pulling the pupil away from the center due to scar tissue. We have a new and different eye drop to see if this will help. If it does she will be fitted for contact lenses in two weeks, however, if it does not help we will need to go in for surgery. The surgery will be to remove the scar tissue and allow the pupil to be round again, it should be an outpatient procedure in and out.
On Thursday, we saw Dr. Grant, GI in Mission Viejo. This was an exciting appointment. We made some changes to her feeds. One we are skipping her 1am feeding so instead of 8 times a day she eats 7 times but the same amount in one day. We also added rice cereal to her milk once a day, we do this at her 10pm feed so that it helps her last through the night until 4am. We are able to get a little more sleep time. We also learned that her MicKey button will be changed every 3 to 6 months. We can bring her in to the office to get it done or do it ourselves at home... I am not sure we are ready for that adventure so when it's time we will take her in.
On Friday, we had our big Neurology appointment that got cancelled. After several calls back and forth with their office we still don't have a new date and time. I hope we hear something this week.
Amber continues to grow 13 lbs 8 oz and 24 inches long, she is doing great. Oral therapy is still going on Tuesdays and Thursdays she is progressing according to the therapist but in my eyes we have a long way to go :-( Please continue to pray for her progress, and continue to send possitive energy our way. Thank you so much for your love and friendship.
It sounds to me like she is doing more and more things like any baby would, that notwithstanding the fact that she has specific issues to deal with. The one thing you can be certain of, for all kids, the learning process is long and continual. It is what becomes part of the fun of watching them grow. Thanks for visiting with us. She is another great part of the family!
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