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.

Saturday, October 19, 2013

Sweet Mimi is turning Three!

Mimi will be three years old on Monday. She had a Peppa Pig party today with some girls from the block. We kept it small, and tea-party like, and it worked out just right.

We ordered special Peppa Pig plates from England, and found polka dot napkins and the other things at shops here. They look cute on my Grandma's tablecloth.

Somewhere online, I found the idea for this cake, and I printed the people on my printer.

Mimi received the Peppa Pig people as a gift from us. They are having a great time in the RV! But George is being naughty saying he doesn't like the top bunk, and Mummy Pig keeps needing a band-aid.

They also enjoy the big doll house, and look very real hanging out in there. I am loving buying just the people to a set, and using them in the Loving Family house, van, and RV. Caillou and his band of friends have enjoyed the house for nearly a year already,
 Such a big girl, I am glad she had a nice party.
Happy Birthday Mimi!

Friday, September 27, 2013

Time for School

 We're back in school and back into the swing of things. Adjusting to new schedules, new teachers, new classrooms, new cub scout troop, etc. Mimi was not too happy the day Max went back to school. But she sure was proud when it was her turn the next day. With her backpack tipping her backwards a little bit, and her lunch box suddenly seeming much larger than the day we bought it...we headed to school happily.
 Mimi is attending Schreiber Pediatric STARS preschool. There were several trips with her PT  to the playground there this summer, to get acclimated. We also visited her teacher Mr. Jay a couple times. We learned that she didn't have to wait til she was three to start, because the school is associated with IU13, and she was able to start in late August. Mr. Jay and Ms. Carla help her get a mid morning meal, out of the Barbie lunchbox (LOL, not just for show). Inside is cereal with milk and a bowl and spoon. A cherry Lara bar. and two or three warm sausages in a Campbells thermos with a plate and fork. And maybe some fruit.
 Hershey gave us the option of scheduling her pituitary stimulation test on the first day of school (no way), or mid November. We picked November so she could have this moment like all the other kids.
BELOW: First day finger painting.
 It feels like it's been a very long month. I am enjoying and adjusting to the new schedules and "almost" having a diagnosis. Dr. Harbison at the MAGIC Convention announced that Mimi is Growth Hormone Deficient, and looks like a Laron Dwarf (Resistant to Growth Hormone), so we're nearly there, and hopefully the November stim test will go more easily than I'm imagining and give us a confirmed diagnosis. What is a STIM test? We received a brochure from Hershey created by Novo Nordisk (who we also met at the convention). You can read about the test here:

I am still getting asked if she eats from adults with accusing faces. But that is offset by mothers at preschool telling me about what their kids said at home about Mimi eating. "Mimi eats frosted mini wheats. but she doesn't share them." or "No, I don't eat Mimi's sausages." LOL

Adjusting to a new schedule has been both exciting and tiring for her. There are more naps than before. She's sleeping better and going to sleep earlier at night.

Mimi rides in a stroller sometimes so that she can preserve her calories. It feels strange for me, like she really should walk everywhere at almost three years old. but she's already using 1600 calories a day with little weight gain, so I feel it's necessary as to avoid total hunger exhaustion melt down, and to just use the stroller. I also fear weight loss as it takes her a very long time for her to gain a pound. As we learned, sometimes kids with growth impairment need a huge amount of food to grow at all. There is a delicate dance we go through, as to be careful not to burn up all we ate that day, but still be active, use our muscles, climb, run and have fun. (so for example, we might stroll her to the park and back, but let her play for quite a while there until she's "done.") and needs to eat again and head home.

We got out the winter clothes, boots, and flannel pajamas for Mimi as some days here in Pennsylvania, it's gotten quite chilly. We found that yes, they do still fit, and some are still too big. That is very much a strange thing, as with Max I knew nothing would fit him a year later. It's quite strange this saving of young childs clothes from one year to the next. I'm convinced it's a natural primal reaction to feel that this isn't natural... and so knowing what we know, I piled up the summer clothes and with a little sigh, put them away for next spring, in case they still fit- but hoping they won't. but also saying to myself too, "it's ok if they still's ok. get used to it." but not liking it. (primal reaction).

Max on the other hand, could be growing up to be an NFL football player (like his Great Grandfather who played for the original Buffalo Bills), and we discovered after school had started that he needed all new pants! So I also envision ten years from now. My tall son, and my little Mimi bossing him every evening and weekend. It makes me laugh.

I enjoy their sibling interactions and their size differences and personal differences. It's quite entertaining sometimes after a day of managing food, and pick ups and drop offs and playtime. Just to enjoy them in the here and now, knowing the future will also be entertaining- no matter what.