We had our big evaluations with the neuromuscular specialist.
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.
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
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
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