This year they are Sassy and I have to chase after them!

at Conestoga House and Gardens tonight...for annual summer pictures. This year they RUN through the gardens. I yell, "Hey! hold her hand!"..."Hey! watch the stone steps!" ..."Hey! wait up!!!" While looking like crazy lady with little camera amongst casual picnic people, eating brie and drinking wine...LOL. Big contrast from the last two years.  Placing Mimi here and there. Organizing her little dresses.
Now I've got adventure boy, and "I go where brother goes!" lady.

at Nearly Eight. And Nearly Three.

It was MAGIC

 I really can't believe that we went to the MAGIC Convention in Chicago, and are home safe and sound. My beautiful little Mimi had an amazing consultation with Dr. Harbison, who announced to us immediately that Mimi is a Growth Hormone Deficient Baby! She wants Mimi to have her stim test right away. She also wants her to have an MRI to check her pituitary as well as cortisol and adrenal studies. (scary)
Mimi was so beautiful here as a little butterfly. I, on the other hand, was about to faint...this was half an hour after our consultation.

 I wandered around the convention hall seeing friends and faces I'd met on Facebook. Little children from photos coming to life, running in front of me, hugging their friends...eating watermelon, being silly.

 Mimi waited for Heloise in the hallway. She wanted to meet her online friend from Canada so badly. It was so sweet to see them first see each other. They brought with them 33 pairs of French shoes from Heloise to share with other tiny girls. (size 16-20). how cool...

 Suddenly we knew what we were dealing with, with Mimi. and in minutes, I have all the growth hormone reps in full view. I was able to ask questions and gather literature to bring home. I have a sack of GH medication pamphlets. Well they aren't pamphlets. they are like super glossy info packs. of course. but rather timely!

 I spent Friday in lectures learning about Growth Hormone deficiency, and Laron syndrome, cortisol dangers, puberty, and all sorts of other things. Mimi, Max, and Dad went to the Brookfield Zoo with a tour. We met up at 5pm in the room, and the kids got ready for the costume dinner. They were so excited.

 Here's some photos of the night. Mimi thought it was her birthday party. Max wanted the dancing to start right away. He got on the dance floor way too early.

Our friends...

Mimi and "my new best friend!"

Superman, and little ones.

and with a big one. LOL

My first on the floor dancers (well, running around-ers)

 We drove a total of 1500 miles. At one point we were half an hour from IOWA! I saw so many things I've never seen before. And finally, someone had an answer for me. After three long years.

 

 We drove home feeling empowered. Knowing what we need to do. 

Amazed. and feeling educated and supported.

Rail Day

Pioneers

We've been in crowds lately. At two graduations and church. At events for children, at crowded pools. We've traveled to Connecticut and crossed states. And in every setting, I've realized that everywhere we've gone, no doctor could stare across the aisle at us, casually approach us, and tell us what they think is going on with Mimi. Because, they wouldn't know. In a crowd of a thousand, or ten thousand, no one could help us.

As a Mom this is a rather shocking, and stunning realization. It's so isolating, it makes me instantly find a strength inside me. It's one that makes you say to yourself, "well I know what I need to do."

For us it means driving 700 miles to have Mimi meet with the best doctors for growth in the world. We are hopeful that our trip to the MAGIC Foundation Convention next month will give us answers and peace of mind- after three years of uncertainty. I found MAGIC on the web a year or so ago, and was also referred to their website from our nutritionist at CHOP. They are the foremost resource for growth disorders in children, and provide support and information to parents and physicians.

In my "journey" with Mimi, I've been quite surprised to learn that all of Mimi's current local doctors are interested in hearing what I've learned from MAGIC, and in all their current literature. Growth disorders aren't for the faint of heart parent. If your child has one, get ready to stay up to date on everything related to your child's care. At the MAGIC convention, we are hoping for a diagnosis, for lots of information in the form of seminars, and for information to take back home to our doctors.

On our trip to Connecticut it was evident that Mimi keeps me busy. Does the hotel have a microwave? Does it have a fridge? Because at midnight she'll need to eat a meal. It proved to be a good trial run for our trip to Chicago.

We have a couple weeks to wait for our trip. But right now, across the world and America, Little People are packing their bags for the LPA convention which is in DC and starts this weekend! It's so close, the upcoming years will find the convention in California, Texas and Massachusetts. Parents of Little People are breathing a sigh of relief to be near people who understand them. They are throwing clothes in their suitcases and getting out of Dodge. To a place where the people around them are civilized and not staring.

The thought has certainly crossed my mind to attend with it being so close to home, and I have to admit I've had a few conversations with the operators at the 800 LPA phone number (and yes, Mimi would qualify as a member at this point.)...but we need more information, and we're starting with MAGIC. from there, we'll figure out where we belong, based on what is determined, and if Mimi is able to get medication for her growth delay.

We'll have our first experience with a medical convention soon. And on the first day, we will know if these type of things are in our future each summer from now on. I feel like a pioneer, nervous for my child, unsure what the future holds, but thankful that someone out there can help us.

Mimi met with our dietician yesterday. At 32 months old she is 23.6lbs, and 33.6 inches tall. Since the fall, she has gone from 88% of standard weight for her length, to 94%, and no longer fits the criteria for wasting. (hooray!) She continues to eat 1600-1800 a day. She is still suffering from hypoglycemia and must be fed immediately in the morning, and before she sleeps at night, and given a high protein diet combined with complex carbohydrates.

Her IGF-1 level has gone from a low of 40 to a lower level of 26.

Changes...the Short of It.

It's been so long since I wrote anything for my blog. I had so many great ideas. "our week with Jenny the au pair!"..."How I delivered hundreds of stuffed animals to Max's school." ..."baseball season!''..."end of first grade!"...."should I continue making little hair things?"...."Mimi's recent tests"...."turning 40."

but no, instead I watched online movies about people I met on facebook attending a Growth Convention and Little People of America stories. I read Endocrine Today articles and Journal of Medicine Growth Studies, and learned about Growth Hormone, and Ipsen Pharmaceutical Labs.

I am in a bit of a state, saving to get out of the state- to attend the world's largest growth convention for children with Growth Disorders. The Magic Foundation Convention in Chicago.

Things have gotten a bit intense, as Mimi I think hasn't grown again since February. or gained many ounces since then either. She's like this little beauty who seems to always look pretty close to what she looked like the last time you saw her. At 32 months old her hands are the size of a one year old. Only thinner. Her feet are the size of Will's feet on the Little Couple. Will has achon dwarfism and just turned three...only Mimi's feet are thinner.

I am nervous, as we've made the monumental move to have Mimi seen by two world growth experts at the convention. I have wondered about her for three years. Is a month all that I have to wait now?

I've really changed as I've taken care of Mimi. And I have to continue to change in order to survive the endless specialty appointments and feedings. I have to keep track of a lot and have energy for Max. and energy to play with both of them. I can't hear, "oh she's just short" and then abandon her needs ten minutes later. I have to block out those voices and carry on.

Scarily, everyday things seem utterly ridiculous to me now, including my own Creativity. (which has been replaced by research.)

It's rather odd to move away from things I've done for so long. To spend my days differently. It's Adaption.

Happy Easter Little Ones! XO

Mimi and her Sure Steps

Mimi had a great Good Friday morning.
She was so excited to get her "new shoes"...her Sure Step orthotics. They will help her run more easily.

She waited patiently for Chris Lawall from Lawall Orthotics and Prosthetics to arrive from Hershey. She took a photo of him when he came in:)

They were made just for her and she helped pick the pattern and the strap color.

She loved them and loved looking at them.

 

She took off running around the house. Now I'm not sure I'll be able to get them off of her!

 Less falling and more stability...we're all so happy for that.