Whew! We're back!

Hello everybody!

I'm sorry we've been so absent -- it's been quite the few weeks!

Just after Christmas Maisie was re-admitted to the hospital, where we started some pretty heavy-duty testing. My brain is spinning with medical facts and diagnoses, so I'm going to spare you most of the medical jargon. Basically, we've been meeting with a rare disease specialist who was concerned that, with all the trauma and problems associated with Maisie's birth and first few years of life, a rare disease was overlooked. We've been testing and testing and testing but so far we have not found anything definite. There is still a ways to go, so we'll see.

Moving forward, we needed to get a handle on Maisie's muscular problems so she could return to school and normal life. On January 3rd we started a new physical/occupational therapy as well as a new diet plan. We are hoping that a high-protein diet will help to counteract some of the atrophy she seems to be experiencing. To give you an idea, most kids ages 4-8 need 19 grams of protein per day. Maisie is getting 30 grams. To do that we supplement almost every single meal with a protein shake. We're trying to only give her homemade shakes (peanut butter, bananas, whey protein, egg, cashews, coconut milk, etc) but she does get a Breakfast Essentials or PediaSure occasionally.

In terms of physical therapy, she is mostly working with her therapist, Dr. L, who is wonderful. Some days she is very weak and uses a Leckey Totstander, exactly like the one below). We are hoping to order a second one that can be kept in her classroom.

I just quickly want to address a couple of things people have asked about before I go to sleep. I've heard from a lot of parents, just as we did with the dialysis, that their experiences with hypotonia don't match up with what I've said about Maisie. I know it seems like this came on very quickly, but in truth she has been getting weaker and weaker for some time now. In fact, looking back at photographs and being honest with myself, she's been slowly becoming more lethargic and "floppy" since before she turned three. I just wasn't willing to realize how much trouble she was in until she could hardly stand by herself anymore. It's true that hypotonia is usually present from birth, and that is not the case with Maisie. With normal hypotonia cases it doesn't make any sense that a diet change would help anything. But her tests (which I really don't want to go into in detail about right now) show that we might see some improvement with a high protein intake and lots of physical exercise. Actually, I should be calling her condition muscular atrophy instead of hypotonia. Her diagnosis was changed two or three weeks ago but out of bad habit we are all still calling it hypotonia. It's unprofessional, I know.

I'm sorry we've been distant, and I promise we'll be in touch more.
Love and hugs from Charlotte!