Praises...

There are little signs of improvement. I hesitate to say at this point, but I am so grateful for anything that shows some relief for Annabel. She seemed to have more energy today and more playful times. The pulmonary dr. has given her some meds to help her manage her secretions. This should have made her sleepy but instead she woke at 1, 3 and 5 p.m. with smiles and playing pattycake. She never really experience those deep sleeps where she had those low desats. So I don't know if the meds energized her or if she just had a good day. Like I said I will praise God for any upswings. There is a downside to this medicine that we have to closely monitor. It can thicken her mucuos so that she will not be able to move it, also will lessen her urine output (risk of infections), and also slow her GI tract (not good for her already severe constipation). It will probably be a few days to see if this is making an impact. Thank you so much for your prayers.

Garden Fairies...

Just a brief note to say that the email that was sent to me yesterday from a mom with a similar situation was so well received by the pulmonary doctor. I want to thank her from the bottom of my heart for not just reading and clicking off her blog. Thank you to her for taking the time to write in such detail what she has experienced. As I said I didn't come home from our appt. on Wed. feeling so good about the time it was going to take to find anything out. Within probably one hour after the doctor received the copy of the letter from this mom that I faxed, he called me. The nurse was so friendly and reassuring when I called and said she would give it right to him. He had to have read it, then he took the time to see her blog and then called. I felt he took so much time on the phone with me today and told me we would work together to help Annabel. He said this email from the mom all sounded so familiar to Annabel's issues. He explained so much in detail and actually said that he had said several of the same things just in different words. He even said maybe that the other dr. had used better wording. But today he was so reassuring that I feel very comfortable and excited to be on board with him. He also explained that he has treated trisomy patient before, that he is a pediatrician and is just beginning his pulmonary stint. He also said he was going to be open to any information that I would come across and then we could discuss it. I am thankful that God obviously knew I need this comfort. Along with stress, helpless is not a great feeling.
On a good note, the oxygen is helping Annabel through the night. She seems at this point to not be quite as tired the next day after a good nights sleep.
I am posting a few pics of our Garden Fairy! She can make any garden bright and colorful. We made one house for trick r treat and that was her teacher! When you seen Annabel come alive in her presence you know she has an amazing gift.