Friday, June 28, 2013


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.

1 comment:

Karen said...

Maggie, I am always thinking about your family. I hope your upcoming trip gets you some answers!