Overall, I do think Annabel is better. Her spells have lessened for now. When they are happening it can be very scary but they don't seem as often. After my last post when I was hoping the breast milk had done some miracle things (poop) she was actually getting a virus(assumed). She began to run fever and then the diarrhea began. Sunday was the day she really felt bad. The medicine the pulmonary doctor prescribed to help her control her secretions works some as far as the secretions. Some of the side effects are that they will make the secretions too thick where she can't move them, also urinary retention (sure don't need any help in this area), and also slow her GI tract (it was already basically at a standstill). She was already on a low dose and today we have cut that in half. It helps with the runny nose (nasal area) but as far as the mucous in her chest, it totally turns it into a glue like substance. She can barely cough and it is so hard to get up. Occasionally, she would have some urine in her diaper during the night or if we couldn't cath her right on time, but since the meds. she doesn't have any wet diapers. Her urine output at ca thing has gone up about 80-100 cc. We have had to begin Miralax, breast milk and still no Bm's. We are having to help her in other ways. So everything seems to be a trade off.
The good thing is when the fever started her sats stayed in the normal range. Not sure if she has not been sleeping as deeply or what but now she only had a very few. That is huge news for me, as I am not nearly as stressed about get the sleep study right away.
Tonight we attended my aunt and uncle (godparents) 50th wedding anniversary. She has mutured so much. When she was little she could hardly stand to be out of my site. She went to everyone and made all smile. Of course tonight she was so happy. There was music which she loves and lots of picture taking. I didn't bring my camera but will get some and post soon of what a happy baby she was.
Praises here are that she seems to need much less oxygen, there seems to be a bit more of managing her secretions and tons more happy times than before.
If this had anything to do with her having some kind of reactive airway issue due to the storm, I am hoping the cool weather/rain has maybe washed or done away with some of the bad air. This would mean that Annabel is not experiencing anything permanent from the Trisomy itself.
Thank you to all who comment, visit her site, place calls, ask questions about her and offer prays on her behalf. Thank you to LaToya our nurse who has helped me to be able to be more consistent with her care. Thank you to our therapist, Meg and Carole, who continue to push Annabel and to put up with last minute cancellations due to her just not being able to make it. Thank you to my friends who offer me support, calling me to take me out making me feel normal and that I can have some bit of a social life, to my children who come over and love their little sister to her core. I know she bring them such joy, but they can't begin to imagine the joy they bring to her little life. God has blessed me with so much and I will pray he continues to give me the courage to make wise decisions and the strength to meet her daily needs.
P. S. by the way, she doesn't sleep with headband in her hair. We had been out and I had not removed it yet.
