1.13.2010

Just a quick update

So we met with the pulmonologist to go over Lillian's last sleep study. She said "this sleep study doesn't concern me." In fact, when I told her Lillian had the sleep study in preparation for starting growth hormones she said "Growth hormones will definitely make an improvement." So when I told her our endocrinologist cancelled Lillian's GH because of the "failed"sleep study, she went to get a second opinion from another pulmonologist. That pulmonologist also said the sleep study wasn't concerning...

Yeah. So take THAT endocrinologist. ::insert angry face here::

I assume he's still going to be too chicken to prescribe Lillian growth hormones, so we've been in contact with a doctor in Florida to do it instead. She agreed to call him and try to talk some sense into him, but I will be shocked if he listens. After all the trouble we went through with this sleep study and trying to get Lillian on growth hormones, I'm really glad we are educating ourselves and not letting the doctors call all the shots. It's so true that we as parents are the only ones that are really going to look out for her best interest.

Another example of poor guidance from a medical professional: Last weekend I was talking with a speech therapist about wanting to get Lillian help with oral motor skills. She needs it. How else is she going to learn to eat by mouth? I tried to get a speech therapist through First Steps back in October and she didn't qualify for one. They said we would have to wait until she has a speech delay and that being on a feeding tube doesn't automatically qualify someone for a speech therapist. I explained this to the speech therapist and mentioned I thought I would try to get one again through First Steps. She tried to tell me that it wasn't worth trying again, that I should hire a private speech therapist and that First Steps had too many rules set in place to get a speech therapist this early. Today I made ONE phone call, told the coordinator with First Steps that it's standard of care for anyone with Prader-Willi to have a speech therapist to help with oral motor and feeding, and wouldn't you know... she said SURE! She sent out a mass email to all of their speech therapists to see who would be available to start meeting with us ASAP.

I'm definitely learning how persistence can really make a difference in the type of care Lillian receives. There's no reason why she shouldn't get every opportunity to get the treatment she needs, and I'll be damned if somebody tells me "no" and thinks that I'm going to accept that as an answer.

7 comments:

  1. Good job with staying persistent, it will totally pay off in the end. A good and helpful endo is very hard to find, but there are some out there. Keep looking, you will find one that meshes well with you guys! Your family is always in my prayers!

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  2. Never accept a "no" from someone who isn't empowered enough to give you a "yes". My favorite motto, "Can I speak with your supervisor?" Good for you for putting balls to the grindstone and getting what you need.

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  3. You guys are truly amazing parents. Lillian is in good hands!

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  4. Lillian is one lucky girl to have you for a Mom. Way to go! :)

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  5. You go girl! I'm so happy things are looking up :)

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