6 Months Old

Amber continues to do well at home. She is doing oral therapy twice a week. This coming week we are going to try 5 cc of milk with a bottle. I am very excited about that, if she does well for two weeks they will try the swallow study again. I did figure out that therapy will be for a long time, not only does she need to learn how to bottle feed, she will need to learn to eat with a spoon watery, solid foods. We take it for granted but it takes lot of cordination to eat, taste and swallow. I am happy to say she is 11 lbs 8 oz according to the scale at the cardiologist office... woohoo. Cardiology did not increase or change her lasix, he said to let her out grow her dose.

Tomorrow she turns 6 months old, crazy how time flies. She desperately needs physical therapy more than what I do with her at home. We are waiting to be evaluated by someone else on August 21st, that makes two visits by the same department and nothing. She gets really stiff and tense when she has gas or is just unhappy for whatever reason (still not sure if its brain related).

I might be late with the blog next Sunday, it's my birthday and I am taking Taylor and Kyana to Disneyland. I wish I could take Amber but I am not that brave yet. So check on Tuesday instead of Monday for an update :-). It will be an easy week, just oral therapy.

I did get some sad news that I wish you could pray with me on. Laura and Mike lost their baby boy Mikey after nine months in the hospital on Tuesday, August 4th. Mikey's journey brought his parents from Ladera Ranch to Los Angeles. Even though we live a city apart, we met miles away. It was this meeting that gave Amber the best Cardio Surgeon in the Nation, Dr. Starnes. They had been there since December, we went for the first eye surgery in March and they recommend the dr. He was not only able to fix the chamber but adjust the tricuspid valve from severe to moderate/mild at an earlier date than expected... at the time she needed it. The other doctor wanted to wait til now (6 to 9 months old 10 to 11 lbs). His funeral and service will be tomorrow at 930am, please pray for his parents and family for peace.

I continue to be so grateful for all your positive energy, prayers and advice... God is listen and Amber continues to thrive at home.