Updates and Prayer Request

Hello all:

Quick post tonight, as I have a very big jewelry show Monday through Wednesday this week, and need some rest. I set up tonight and I am already exhausted and the week hasn't started yet. I might be in trouble....

My most sincere apology for not posting the results of Abby Grace's last sleep study. I was a little bummed by the results and frankly, just wasn't ready to talk about it I guess. However, it just lets me know that our journey did not end when she had this surgery, and it isn't time for us to get off the ride just yet. She is having MORE central apnea, than she was having prior to her surgery, which was VERY discouraging to me. I spoke with multiple doctors that day, and they all have said we are in "uncharted territory" with Abby Grace and her case is "so rare" (meaning all of her symptoms combined and the SIZE of her chiari; not actually having a chiari itself) that we really don't know what to do with her at this point. So, the plan is for now, that we will repeat her sleep study in December to see if her brain has healed or adjusted anymore since her surgery. We are still very much anticipating her MRI on November 12 and our fervent prayer is right now that her surgery was indeed a success. However, if when we see the results of her MRI and the surgery IS deemed a success, there is a possibility that they will start looking for something ELSE on her brain that could be causing all this central apnea. Obviously we do not want to go there. Hope that all made sense.......

One of the other things we are doing to try and help her with this apnea is, she will be sleeping on oxygen every night. Her first night was last night and it was very short lived, but not for the reasons you would think. She let me put the cannula in her nose, and wrap it around her head, and she even went right to sleep without too much of a fuss. But the problem is, it won't stay on her nose and when she turns over it wraps around her......so needless to say, I took it off because it really wasn't safe. So are there any parents out there who have to use oxygen for your kids? I would love to hear any tips you could give me on making it a little safer so she doesn't get this around her neck in the night? That is one worry I just cannot have....

Also, I want to ask all of you to please pray for my family right now, my brother and his wife specifically. I cannot go into detail just yet, but there is the possibility of an addition to our family very soon and I just ask that you cover them in prayer right now. We ask for the Lord's protection over them, for His guidance and wisdom, but most importantly that this precious child have a safe and loving home to grow up in. Thank you all so much.

I think that is all the updating for tonight. S0 sorry no energy for pictures, although I have baseball and softball pics to post. I need to get it together......maybe on another day. Goodnight friends, thank you for being such a part of this journey with us called life!!!

Amanda