Life and the Center for Courageous Kids

Playing outside with sister

Have I mentioned her bus ride and how I feel about it?

Bella’s school had a Gallop A Thon.  Bella doesn’t know what that means, but she got a new shirt (and it’s not a uniform shirt!)

Little Miss picked up ringworm somewhere, so off to the doctor we went.  She wanted to sign herself in!

More play time with sister

Mama is getting ready for this strange concept, winter!  At least Bella gets to play with the boxes!

Blood work was required for her physical.  She was happy to wait, but so not happy (one Mama and two nurses plus two child life specialists) to give her blood.  Her results were fantastic though!

French fries to cheer us up!  She’s not sure they are worth it! :)

For the weekend our family went to Center for Courageous Kids.  Our family was assigned two helpers, Miss Amy and Miss Shanna.  She loved them.  We had so much fun! She loved the music and the horses!

On the way home from camp, we stopped at Abraham Lincoln’s birthplace.  They have a lovely National Monument there celebrating his life and accomplishments.  They also have a boardwalk so people in wheelchairs can see everything too! We were grateful for that!

NORMAL!

How often is that label slapped on my baby girl?

Ummm……never.

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!