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.

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.

While you were sleeping...

This past month we've battled some sickness with Max. The flu, his appendix out on day 5 of the flu!, 2 nights in the hospital, then 5 days later a stomach flu. It's been really one day at a time for us, as his energy is rather low, and it's taking a while for him to recover. This past Friday he became sick again with a stomach flu and now we're set back again.

Mimi has taken to eating more than ever. We're over 1400 calories a day now, and since October she has gained 2.5 pounds. This past month she grew .75 inches suddenly which was the first time she has shown significant growth since early summer.. She's up til 1am most nights eating. We've added more calorie rich/high protein/high fat foods to especially her nighttime feeding. I added an IKEA step stool to the counter to accommodate her growing independence. But it's also facilitating her eating even more, as she's able to help. She's sneaking lots of extra soy butter in, during her helping, and is vocal about needing another serving of what we're cooking.



We're on another cleaning tangent. It's the simple things:)




We have joined the MAGIC Foundation for Children's Growth. It's been a wealth of knowledge for us as we learn about growth disorders. We hope to attend their educational medical convention this July and are raising funds to attend. To contribute you can click on the link in my side bar. If Mimi has a diagnosis by then, we can attend seminars to learn about that condition. If we don't know, and even if we do know, we can meet for free with the top two growth specialists in the world.



This past week we had Mimi's genetic testing done for Russell Silver Syndrome, a rare form of proportionate dwarfism that is actually in the Primordial Dwarfism category. Girls with RSS can reach an adult height of 4 foot 5 inches with no growth hormone, have worrisome early years (it's dangerous if they become ill with typical illnesses) and need their growth and health monitored religiously. Because of their low muscle tone, they can develop cardiovascular issues. They can be prone to kidney problems, and it's dangerous for them to have any surgeries without a glucose running IV. It's really not our concern that she may be very small, but that these children have a severe need for food during their infant and toddler years, need fed every 2-3 hours round the clock, have hypoglycemia issues, and have gut mobility issues. Mimi has all these and we are focusing on absolute calories all day long. Mimi has already had two surgeries with no glucose running IV...and both times worried me so much- I was a mess over the fact that they fasted her beforehand.There are guidelines for weight gain in these children, the most practical advice is that no matter how many calories they are consuming, if they are not gaining, more must be added.

We have tackled this over a year ago, which is why she went up to 1400 calories. but now we are stepping it up to a level you wouldn't believe to help potentially increase weight gain and subsequently, height. This means boxes and boxes of soy ice cream sandwiches, sausages (20 eaten since Thursday- three days ago), peanut butter, pringles, oreos (yes oreos, dairy free and high calorie). We've added pints and pints of blueberries to her diet for gut mobility. Our nutritionist has worked with us to meal plan with rounded meals and snacks, each providing fiber, fat and protein to help keep hypoglycemia at bay. Even so, two times this weekend her ketones were "moderately" high. They are considering putting her on a three day blood glucose monitor to see what her sugars are doing day and night. Her doctor feels that Mimi can express her need for food, "I need eat!" and that I'm responsive to her. But it's extreme what she's doing, and now we have ketone levels to seriously worry about.
and after all this, still, I hear, "it looks like you don't feed her." (!)

For those who say that I'd invite you to follow me for a day (and night!). If I run out of protein foods or blueberries, I'm at the grocery at 10pm for her. If we are out she is consuming full meals on the go. If a light snack is offered I know within an hour she will need protein and fats again or we're done for.

The genetic blood work for Russell Silver was sent to Sick Kids Hospital Toronto. Mimi is suspected to have the milder but rarer form with no asymmetry in the body and no cafe au lait spots. Additional tests run on the same blood that will be banked can be tested again for methylation levels if the initial tests are negative. This is another way RSS can be spotted. If both those tests are negative, then there would be the wait it out component. "increasingly tiny compared to peers at age 3 or 4." Or they could test for other abnormalities if all comes back negative. The initial tests should take 4-8 weeks.

I just know, exhausted at 1am, after cooking more food for her (and feeling like I'm a flight attendant working the night shift) that she falls asleep with her too slim body. and all is not typical, and she is special is a rare way. That is what I know now.