Thursday, December 5, 2013

Just Like a Rock Star...Thank You Fresh Beat Band!

We were so excited to head to Hershey last night for something so fun and special.
We attended the Fresh Beat Band concert at the Giant Center...and I have to say, it was a beautiful sight to see that "Little Light of Mine" happier than she's ever been I think.
And for her big brother to do something so exciting. We needed a fantastic night out!

This was the official first concert experience for both kids!
They could hardly wait for the show to start!
We were really treated so well as VIP guests! Check out the fab seats and cool Fresh Beat Band wrist bands (which 24 hours later they are still wearing, after having gone to school in them, etc. !)
 Mimi was so engaged, such a big girl. She was SO excited, her eyes lit up in anticipation.
And his too...!
At times I held Mimi on my lap, and would wonder what she was thinking. Then I'd glance around at her expression, and every time she was beaming. Or giggling. At Twist. LOL
 My favorite picture of night.
Mimi made a new friend named Carly, and it was all I could do to keep her off the floor (sorry ushers! the kids have to dance!) The band sang all the favorites and were hilarious.  Needless to say, Mimi is playing "dance show" today. And Max is considering taking dance classes like hip hop!

 The show ended with machines shooting confetti from the stage into the air, and cool huge beach balls bounced through the audience.
After the show, we headed back to the VIP party. There were healthy snacks including pretzels and organic fruit chewies. Lots of costumes and things to play on. A dance contest, and the much anticipated photos with the band.

 Check out Max with the gang. Marina had just told him she loved his glasses. So sweet!
If you can check out a Fresh Beat show in your local city, I'd recommend it. The kids will have so much fun. What a professional group of performers. They don't miss a beat!
Thank you Fresh Beat Band! You rock!

Wednesday, December 4, 2013

Officially Growth Hormone Deficient

Mimi had a busy end of November, with two trips to Hershey Endocrine. On November 18, she underwent a morning long Growth Hormone Pituitary Stimulation Test- which is three and a half hours of blood draws. Awake and alert...hard enough for adult. Imagine getting this done at three years old.
If your child is having growth issues, it can take a long time to get to this test...and so for us, it was a major milestone, that we knew would lead to her diagnosis.

The results came back a week later, and we came in to hear them.

My little sweet petunia failed the test quite impressively, proving to ALL that she is Growth Hormone Deficient, and has Pituitary Dwarfism.

The two tests they ran came back in the 2 and 4 range with an average of 3.
A score of 10 or under can prove you need the $2,000-$3,000/month growth hormone shots. A low level like Mimi's shows that she really isn't creating much growth hormone at all, and the lack of GH she makes can have a significant impact on her entire body.

Is this just about being small? No, sadly no. And I love munchkins, gnomes...gnome houses. Small things, probably more than the average person. Her lack of GH is impacting her hair. teeth. throat. ear canals. her heart size. muscle size. organ size. energy level. etc.

So the question in the followup room was, How are her other pituitary hormones functioning?

Poor Mimi...She was sent right out the door of the office and across the street to the medical center lab for another blood draw. but this time just one. And yes, she screamed from the minute he said go, all the way to the car, in the car, across the street, out of the car, walking into the lab, during the blood draw, and then, stopped when she got her sticker. (here is the save the day sticker. she attached it to my bedroom wall. and I let her keep it there. LOL)

So now we wait to hear back on the labs and a sedated MRI scheduled for January to examine the structure of the pituitary.

For all the research I've done from week 20 of my pregnancy until last week, I still could not have prepared myself. I am sad she needs shots for the next 10 years, or maybe even every day for life. I love her and I don't want her to go through all this.

I know I did absolutely all I could to find out for her what was going on. I prided myself in realizing that few kids Mimi's age get this test done (maybe 12 a year in children that young per institution...usually it's later in their childhood, say ages 8-12.) I also knew what to ask at the followup. What about her other levels? What about her eating so much? Yes, her development is right on, but she does tire out and need food, a lot. And when is the MRI?

I am proud that I joined the MAGIC Foundation a year ago, drove 1500 miles to attend the conference. Met with amazing endocrine doctors in the USA and asked their opinion.

I just have to get used to the new normal, and brace myself for a shelf fridge of medical items and a needle dispenser. I want to make the best of all the appointments that are in our future, and make those days as comfortable and happy as possible.