Happy Heart Day!

I don't have much new to report, but it is a "no news is good news" kind-of thing. I write many blogs in my head about this or that, but I don't seem to sit down and get them written in reality.

Annie seems to be doing well as she franken-walks around with her toddler belly sticking out. (We weighed her tonight and she is 20.4 pounds -- that's great!) Her other issues have come to the forefront right now, as she is not talking and still not swallowing solids. Her Physical Therapist is looking to transition her from PT to speech therapy sometime early spring -- a move that we expected. The speech therapist will work with swallowing/feeding issues as well, and Annie seems to be doing really well strength-wise. (We joke around here about Annie being "our hypotonic daughter" as she crawls out of her seat and WALKS across our island or dining room table, climbs ladders, or carries the step stool with her around the house so she can see and do anything she wants! The hypotonia diagnosis seems to be a distant memory, but the PT does still see some weakness in her arms and upper body. If you saw Annie in swim or gym class, though, you would never guess she has any strength issues! Strong-mindedness can make up for a lot, I think!)

As for the not talking part ... well, I don't know what to think about that. She has missed the dreaded developmental milestone of 3-5 words by 15 months. The dentist that saw Annie for the first time last week didn't see any structural reason Annie can't talk, so the ball is firmly in the speech therapist's court. Meanwhile, Annie has NO PROBLEM getting her message across. Believe me! Even the dogs know what she means sometimes (as she babbles loudly, holding a pretzel or cheerio in one hand, and clearly telling the dogs to leave her alone). She also has told me firmly to let her do things by herself, to help her up into a chair, give her my swim goggles, and many other things; all without uttering an inteligible word. Just a typical second child? We don't know at this point, but we're working on figuring it out.

Annie's sedated echo/bronchoscopy procedure has not been scheduled yet, and March is becoming crowded. I won't be sad if we have to push it out until April, but I know I can't put it off forever .... Lately there has been some talk on the children's cardiomyopathy list serve about the effectiveness of beta blockers in children. I hate seeing research like this come out. It's just so frustrating! I want to think that all of the work to get meds into Annie is paying off in increased heart function, but I think the reality is that nobody knows with this disease. As always, most people comment on "how great" Annie looks and that "you'd never know" she was sick at all. That's another common theme with families on the list serve, because these kids usually DON'T have any external symptoms of their disease. It's hard -- in many, many ways -- to keep telling people that we know she looks fine, but she could be on the transplant list after her next echo or hospitalized at any moment or ...???? (Truth be told, it's hard for me to remind myself of that, too, as she laughs and plays with her big sister. I have seen so many stories about cardiomyopathy, though, that reality is never far from my mind.)

This sounds like I am being or feeling negative and that is not the case at all. So let me reiterate that Annie seems to be doing really well right now! She is eating, gaining, taking her meds happily, and just a crazy, happy presence in our lives. Annie is definitely one-of-a-kind, in many ways! I have to admit that I have been in a bit of a funk lately, as we just passed the one year anniversary of Annie's cardiomyopathy diagnosis (Feb. 9). Last Valentine's Day, we were on the cardiac floor at Children's and our lives were upside-down. Seeing these pictures makes me happy, though, and helps me focus on TODAY. Today, we are doing well and managing Annie's diagnosis.

Last year versus this year: