Little Bella has captured the hearts of our family and everyone that meets her. We want to share her story with all.

Tuesday, September 16, 2014


How often is that label slapped on my baby girl?


Except today!  So thrilled.

I have been feeling that Bella did not need to be on thyroid meds.  I know, DS kids have a higher rate of hypothyroidism than the rest of the population.  I know that she has had more labs on her thyroid levels than I care to count.  We have done nuclear medicine scans to even locate her thyroid at one point.  We have walked the endocrine road, but lately, I just wasn’t feeling it.

Talked to her Endocrinologist.  Well, that was a no go.  After she was decannulated, I asked to have as many of her docs moved closer to our home.  Shocking, I know.  Who doesn’t enjoy the commute downtown?  I got an NP and a doc that I just didn’t like.  Won’t listen and frankly, was hard to understand.  Crazy Mom who questions everything. How dare I?

So I was crazy and during the move just stopped giving her the med.  Lest anyone jump all over me, I watched carefully for signs and symptoms of low thyroid – and nothing.  I had the pills ready to crush and push into her tummy should I see so much as a stray hair on her pillow, a patch of dry skin, or extra fatigue. She was the same.

We got here and I visited with her new pediatrician about my concerns  - and she listened to me.  TSH and T4 labs were ordered and have just come back.  Her results are completely normal!  Wahoo!  So excited!

Now we’ll continue to monitor, but I really feel and the pedi agrees with me that this might be the cause, her abnormal results started during our ICU days.  And being on death’s doorstep can definitely have an effect on thyroid and thyroid function.  So did she need the med during all of that time?  Probably.  But this girl of mine has healed and her body is preforming its proper functions – and we are down one med and one doctor!  I am so grateful!

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