Archive for March, 2011

Another day, another specialist.

We’re home from the Endocrinologist, with more to think about.

He’s not convinced that her growth issue has to do with her steroid issue. It COULD have to do with her nutrition and eating…but he’s not convinced of that either.

We’re doing a full genetics test, along with another early morning cortisol draw tomorrow morning. She also had a bone age test.

I did learn that even when she was still following her growth curve, she was “small” for her predicted height (whatever formula they use with parent height to get the range of how tall a child will turn out) Meaning that even if she had not bottomed out, she wouldn’t have reached her predicted height. (which is between 5’2 and 5’5, or something like that) I think that’s why he’s not convinced that this all has to do with the steroids.

He’s not sure that getting her off the steroids is the best course of action, but will defer to the pulmonologists on the case.

I didn’t walk out of there feeling like we had “ruled out” anything. It sort of feels like he really thinks there’s something more going on, and that really, really frightens me. That whole “we don’t get more than we can handle…” I’m feeling like I’m getting to my end point…I’m frustrated, and scared, and not feeling a whole lot like I can “handle” it.  I will…I have to…but, really…how much more can I take?

The importance of someone who “gets it”

I was chatting with an acquaintance  yesterday.  Her daughter is in dance class with my girls, and her son went to preschool with Abby.  Her son has multiple medical issues, both with food allergies, and Autism.  I mentioned that we were doing a week inpatient stay to get Mariella off of her medications.  (she had overheard a conversation I was having with a friend in the waiting room, and asked me…which is no big deal)  The look on her face was priceless.  She’s seen Mariella at her worst, and at her best…which isn’t all that great.  Needless to say, she was in shock that  her team would be trying to get her off her medications.  I just said it was a trial, and we would adjust as necessary.  I DID however say, “I know I shouldn’t be freaking out right now, there’s nothing to freak out over, yet.  I don’t need to start worrying until July.”   She gave me a wonderful gift…and I don’t think she even KNOWS she did it.  She gave me permission.  She said, “But you WILL worry…every day, because she’s your baby.  Just because it’s not happening for a long time doesn’t mean you aren’t thinking about it, and worrying about the implications…it really just means you have a long time to think about it, and worry.”  It was just so nice to have someone GET IT.  Someone who understands, who validates the feelings I’m having.  (and that’s not to say there haven’t been other people who have done those things…but YESTERDAY, when I was in a pretty bad place…having her say it was a gift.)

There are so many people in my life that get it…that understand.  I’ve been blessed with a friend who has a child that has gone through this before….and while getting to the place where he’s at now was a very scary road, and I hope we don’t have to follow the same path, I know that if the worst case scenario happens, I can call Sherry and say, “how did you do it?”  I know I can call her and cry, and she’s just going to listen, and when I ask, she’s going to tell me what I need to know.

I have fabulous friends on the internet…people who I will likely never meet, who get the worst of me, because they see a face of me that I don’t show other people around me.  They get me when I’m freaking out and crying and at the lowest of the low.  I can’t express HOW grateful I am for that.

It’s important to have people who “get it”  A support system, a safety net.  Everyone needs someone in their corner…and I am blessed and grateful for the people in mine.