Sweet smiles...

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.

NO PICTURES PLEASE...

WARNING... This post is concerning Poop so you may want to just skip this one! Well, one of my other concerns with Annabel has been her very long term use of laxatives. Specifically, Miralax what she is taking now and has been for about a year and half if not longer. If you read the warnings it says not for children and also not to be on it longer than several days. Also, Annabel has been taking the adult dosage of this medicine for over a year. I have also been told by other moms that this is basically antifreeze. I have tried natural remedies, tons of prune juices and fruits, Activia w/prune, cereal with prune and other over the counter remedies. It has been brought to my attention the benefits of breast milk and all it could possibly do for her. We began using breast milk about 8 days ago and was still adding the Miralax but slowly weening her off. The last two days she has had no Miralax with the breast milk and today she had two beautiful loose diapers. You can thank our nurse from stopping me taking pictures of this historic event. Annabel never has diarrhea or loose stools. I am praying that this is one of the benefits of breast milk.
UPDATE ON POTTY TRAINING: While on this potty subject since Annabel has been sick with all her oxygen needs we have been lax on her potty chair activities. This week I decided to put her back on and immediately she did both her business right away and then proceeded to clap so happily for herself. So we have been putting her on the potty and then cathing her. Just wanted to let you know she has not lost this skill and we are so proud of this.
MAJOR THANK YOUS....these are for Connie who strongly told me about the benefits of breast milk and the good things that can come from this. (Being an adoptive mom, I never really research this for my older 5 children) She also helped me join Milkshare and navigate this site. She also shared a couple of her contacts. I hope these mommy's aren't offended if we call them Annabel's new milk mommies! They are Lyanna, Michele and Tamara. What a gift that these mothers are offering so my precious Angel can have a healthier, more natural nourishment for her fragile body. Annabel continues to bring me more blessings than I could have ever imagined.

Some improvement....

I am so thankful for the improvement that she is experiencing. It has brought much relief to her and myself. The spells seem to have decreased during the day, which required less oxygen use. YIPPEE!!! She is eating better by spoon and also taking her milk better. She is still having these these episodes during the night. She is dropping down to 50 some nights which scares me. As I have posted before they can do NOTHING until this sleep study is done. We were told almost 2 weeks ago that it would take two months for the study to be done. Well as of today I have heard nothing! So I called the nurse in the sleep lab and was told that it was never ordered or sent. So she now has to give to a dr. in the sleep lab to review (which takes 5 days, approx.) and then the soonest an appt. can be made is March, 2009! It is so hard for me to believe that in this huge city of Houston at this supposedly wonderful children's medical center that this is the earliest we can get an appt. I just cried when I was told this and was more than frustrated. Anyway, I just need to pray harder and will. I truly am praising God for the good days and the happier times that she is having. Thank you for continuing to read about our precious Annabel.