Wednesday, December 18, 2013
Sunday, December 8, 2013
Thursday, December 5, 2013
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!
Mimi was so engaged, such a big girl. She was SO excited, her eyes lit up in anticipation.
And his too...!
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
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.
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)
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
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.
Such a big girl, I am glad she had a nice party.
Happy Birthday Mimi!
Friday, September 27, 2013
BELOW: First day finger painting.
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 fit...it'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.