Topic: May weigh in
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April 30th, 2007, 07:18 PM
SadieCass SadieCass is offline
Mega Super Mommy
Join Date: Nov 2004
Location: Indiana
Posts: 1,615
I updated our weights for you! Not sure why I never put April in there...but there you go

Updates around here...

Molly put on a pound in a month, and got insanely taller. If the double your height at 2 years is accurate, she's going to be amazonian. She's still a beanpole and in the -20th %ile for weight, but she's doing well. Despite still being lacking in social and speech skills, her personality HAS blossomed. She's turning into a little snot...but an adorable one. Her next appt. w/ the specialist is in June. I'm sure we'll still not have any answers, but I had another doctor today comment that she had a Russell-Silver face...so I think we're pretty set on that diagnosis. The PDD is more of a challenge, and nothing will happen until she's 3 w/ that one.

Kennedy is still lacking in a diagnosis as well. To quote her pulmonologist..."I'm really on the fence as to whether she has CF or not. I just don't know yet." In other words, the sweat test (a definitive test) is wonky, with higher than borderline numbers...but we've only been able to get enough sweat once, and that was the bare minimum of preferred sweat. All of her nutritional bloodwork came back good. And the genome test tested for 97 of the genomes, and they were all normal...but there are 200 known genomes (and goodness knows how many unknown), so it's still out there. She wants to wait until K gets some more wait on to re-test a sweat test...but she WANTS to. She said that her weight gain is great, considering...but the continued coughing/wheezing is very concerning to her. We are to re-start the Zantac in case of reflux. We are to get Singulair once we get supplemental insurance again to cover it and start her on that. Keep up w/ two doses of Pulmicort a day, and the albuterol for bad fits. She's being medicated out the rear, but we still don't know for sure what's wrong with her. We should bet getting CSHC coverage for sure with all of her issues. She has "severe trunkal hypotonia" (doctor's words today) for which we are seeing a neurologist in July (sooner if we can...we're on a cancellation list). They may require a muscle biopsy, but we won't know anything further on that until we meet with the neurologist. She now has PT as well as OT...so hopefully that will help some of her issues.

Who'd have thought K would be the one facing all of this? Too look at her, she's a chunky, happy baby...but the only reason she's 'chunky' is because her height %ile is as low as her weight. Molly is persevering and getting better everyday. Still has her limitations, but she's good.

Anyway, because of all of this, I'm going in on the 7th to apply for SSI. I'm applying for both girls, but because Molly has no specific diagnosis yet, I'm not expecting it for her. If I can get SSI for K, I don't have to go back to work...which I really don't want to. Not until we know more...but our money is limited, and we're getting tight around the middle for sure.

That's it....I think. I'm sure there's more, but I'll have to do it tomorrow when I have more time.

Sadie
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