Re: Kathy-Does anyone have trouble with oxygen dropping while asleep????

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Thanks for the note. I wish Amie didn't have to deal with the possibility of another child dealing with Mito. We know that several of our kids have symptoms of Mito and wonder about their futures, but I try not to worry about them. Both my 10 year old and my 7 year old and extremely thin and don't seem to be gaining. In fact, Isaac lost about 10 lbs. with the pertussis and hasn't regained it yet. He is 10 and only 65 lbs. Tirzah weighs 48 lbs. at 7 years of age. They both have rings under their eyes all the time and are sickly looking. Tirzah saw Dr. Whiteman and checked out ok but Isaac has never seen him. I probably won't have him seen unless something more serious happens. Leah, my 13 year old has many of the symptoms I had as a child and I assume she has Mito but hope it will remain "dormant" or not get bad as she gets older. Rachael is my "healthy one." Other than some asthma flare-ups during the pertussis and some migraines, she is doing great. I am sure it must be stressful for your daughter as Audry has had so many problems to deal with. It has been a hard couple of years for her. Again, you are such a neat grandma! I always enjoy hearing you speak of Audry and can se how special she is to you. Amie is very fortunate to have you. Darla Re: Does anyone have trouble with oxygen dropping while asleep???? Darla, I was just reading a few posts and I wanted to jump in and tell you how we get Audrey to keep her O2 on. We have taken a large adult face mask and cut the top of it off, we then put the elastic around Audrey's chest under her arms. It is just blow by but it is enough to bring her sats up. She wears hers off and on through out the day as we have discovered it seems to give her a boost in energy. She doesn't have to work so hard for her O2 I guess. The respiratory folks didn't think she would get enough O2 this way, but it brings her sats up from the 80's to the low 90's, and that is good for her. She just will not keep the regular mask or the cannula on. For a child that has really no purposeful movement, she can sure get that mask and cannula off in a hurry. The doctor said her sats would be better if the O2 were delivered a different way but it is not worth it, with her fighting it so bad her sats go down even more. I also read ahead and I want to tell you we are praying for Luke. I know this is a very big worry for you as I also see Amie with it with her son, Alec. He has not gained any weight in a year and he just looks pale all the time. Her Ped says to leave him alone but the neurologist says to get a muscle biopsy. He is 6 1/2 and Amie just doesn't know what to do. His father, Amie's ex, won't even talk about the possibilities of something being wrong Please know that you are all in my prayers. I hope you get a chance to have some "just you" time once in a while. It is very important to keep you healthy as well. Take care Darla, and know that there are many people thinking and praying for all of you. Kathy, grandma to Audrey, 33mosPlease contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com