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.
9 comments:
gosh i'm surprised the appt was not ordered! Guess in Singapore we're so used to efficiency, so this seems like a really long wait. keep calling...sometimes people cancel last minute you never know, but you'll have to go on short notice.
Whereas a wait like that seems quite normal to me, from a UK perspective!
Actually, what I really posted to say was "Look at our great big standing-up girl!" I haven't seen a pic of her standing before, and am really impressed!
Yikes! What about hospitals in nearby states? I know the hurricanes have delayed everything, but if you feel this situation is life threatening then I would investigate other facilities. Maybe Dallas, Louisiana, or Denver - they have a wonderful children's hospital. What about the Trisomy clinic - is that in Utah? Would they help? I am praying for you!
Love,
Lisa
Seeing Annabel standing with her walker brought tears to my eyes! Awesome!!! Way to go sweet Annabel!
Annabel is really looking so grown up. Great pictures. Thank you for sharing your beautiful princess with all of us!
Thank God you called the sleep clinic. What inefficiency.
I think May has a good idea to ask to be put on a cancellation list! Also, I would ask (beg) the pulmonologist to call and see if she can't get in sooner. He may be able to get her high up on the cancellation list if not an actual appointment. I would think a little one should be "triaged" in earlier considering she has extenuatiing circumstances.
Continuing to pray for Annabel to get better and better each day. Praying for her wonderful Mom. You are the best!
Love,
Kathy
Annabel's story as it plays out in your posts and the pictures, always makes me think she's a crazy miracle. Remember how crazily excited we got over her eating mac & cheese @ Luby's? And the whole sitting up thing? I could NOT believe my eyes, when I saw her standing with the walker. What's next???
WHAT!!!! OK SERIOUSLY I HAD TO GO BACK AND TAKE A SECOND SCROLL DOWN "POST LANE" TO SEE IF I MISSED SOMETHING WITH THE WALKER! I CAN NOT BELIEVE MISS ANNABEL IS STANDING AND HOLDING ON AND LOOKING SO GROWN-UP!!!!! PRAISE GOD!
Wow Cathy..... what's next!?!
I so completely understand about the whole frusterating appointment thing! Abbys is developing a thing on her eye and the earliest they can get me in is JAN 9, 2009... what is up with our medical system! Do we not have enough doctors to provide service to all these kids in need? You'd think our special angels would have 1st priority!!!!
AWYYY... I will be praying for you and Missy... please don't be sad... she is in Gods hands and He every appointment logged in His book... don't you wish we could peek!
Love ya friend!
hi Just wanted to say that when i read about Annabel, i am really amazed and thankful for God's Grace. Annabel really is so cute, and smiley. I am May's oldest friend (we met when we were 8 years old in primary school!) and so i follow the blogs she follows and i am so glad that you amazing bands of T18moms are supporting each other in ways that doctors know not of. Your family is amazing.
Bridgette
She is so precious, and beautiful. I love reading about Annabel and I am praying for her too. :-)
I too was quite impressed with the standing up picture. Go Annabel!
My first visit to your blog--Annabel is so stinkin cute!
I'm with the other girls--have them put you on the cancellation list, and then call the pulm and complain complain complain. A lot of times our docs can get things scheduled much faster than we could manage. Must be MAGIC!
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