Meisyn was her usual delightful self. It was just Mama and Meisyn and we had alot of fun. We still have many things we want to do. I had a chuckle at my concerns over the darling dimple in Meisyn's left cheek. No worries. She is just getting FAT! She has gained another 2 pounds in the past 7 weeks. This explains the fatigue too. She is not used to having to drag all this weight around and it tuckers her out sometimes. She tips the scales at a whopping 33 lbs now. WAHOO. The specialists would like to see her at the 10% level on the growth chart. We will have a long way to go to get there.
Severe. I have learned through the years that hearing this from a doctor is never good. Meisyn still has many tests to pin down exactly what is going on with her but she has too many unique things happening that suggest she might have a nerve disease AND the muscular disease. We won't know for a while yet but it doesn't really matter as both end the same way. They are both on the same road but we aren't sure what exit we will be getting off. I asked if it is possible that Meisyn has just a nerve disease. It is possible though unlikely and the end result is the same....and whatever it turns out she has, she is a severe case already.
There will be overall deterioraton and weakness with Meisyn's body. The flu or a respiratory illness is
going to be her nemeis by overwhelming her respiratory system. She is considered medically fragile and if she goes more than 12 hours without food or drink she needs to be admitted to the hospital and be administered amino acids directly into her muscles. The pulmonologist will be seen next and she wll get nightly oxygen set up for nighttime.
The specialist would like us to consider again the surgery for her scoliosis as that bending spine will continue to limit her lung capacity. Shriners prefers to keep her comfortable and not do the surgery, let her enjoy the time that she has. I don't know yet what we will do.
We will make every day count. We have more princess dresses to buy. Today she told me she needed a crown. But of course! She told me on the ride home that she loves America because she can wear dresses and have long hair. The simple dreams fulfilled of pure hearted little girl.
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