Tuesday, June 15, 2010

Summer in Holland

It's been a long-standing tradition of ours to have several appointments each summer for Superkid with specialists at the children's hospital.  Contrary to what you might think, Justone and Endeavor love to tag along.

Our children's hospital is soooooo good to all the children who enter it's doors.  It's not just the patients who are treated like royalty:  their siblings are always, always offered special prizes and opportunities with every procedure, as well.  I can't tell you how grateful I am that we have hospital that recognizes how difficult one child's health problems can be for an entire family and works hard to provide the entire family with care.  Since Superkid was born, I've spent time at three other children's medical centers; Riley Hospital far surpasses the others in this aspect.  I love this place.

Funny story: a few months ago I promised a friend I would watch her little girls one day.  I had forgotten when I promised that we had an appointment for Superkid up at the hospital that same day.  Since I'm used to having kids tag-along with me to doctors' offices, I decided to just take my extra charges along with us, instead of cancelling either obligation.  They loved it!  They were treated to special toys and prizes and given lots of attention, too.  The three year old asked when she could come again!

I have yet to leave any appointment at the hospital without an armful of stickers, toys, games, and other special prizes.  You will not believe what children are willing to put up with if they know that they can select whatever they want from the prize box when they are finished.  There is a time and a place for bribery, and I'm all for it when you are having any type of medical procedure.  I've been through a few gynecological procedures that would have been much easier to tolerate if I'd known I'd get a prize afterward.  I'm going to suggest to my OB/GYN that he needs to offer more prizes.  (Spa gift certificates would be totally fine.  I wouldn't have a problem with shoes or purses, either.  I'd even settle for chocolate.)

Recently, we made a trip to our children's hospital to see some of Superkid's doctor friends. 

Our cardiologist told us that--unfortunately for him--he won't need to see Superkid for another year.  That is a big deal for a heart kid.  It means Superkid's heart is in good shape, right now.  See you next summer, Dr. Ebenroth!

After reviewing how things had been over the winter (many school absences, four cases of pneumonia, lots of migraines), our metabolic specialist was ready to make a diagnosis.  While he can't pinpoint a specific variety without doing very invasive testing (which we are opting not to do at this time), Dr. Hainline can say that he is 99% positive that Superkid has a mild form of mitochondrial disease, with metabolic and neuromuscular ramifications.

Quite a mouthful, eh?  The very simplified explanation is this:

Mitochondria are like the power plants of the body's cells.  They take fuel and process it so that it becomes the forms of energy our cells need to function properly.  Superkid's mitochondria don't work the way they should.  They have difficulty metabolizing fuel into different forms of energy needed for her cells.  

If you look up mitochondrial disease on the internet, you'll be alarmed.  Remember, Superkid has a mild form.  But knowing that she has a form of mitochondrial disease explains a lot of things, including Superkid's migraines and her "squishy" muscles.  

It also explains why Superkid is such a picky, frequent eater.  Dr. Hainline's team of nutritionists met with us, to help us understand the form of hypoglycemia that Superkid has as a result of the metabolic side of this coin.  (Ketonic Hypoglycemia.)  We don't have to make any significant changes to her diet, just make sure that she has frequent meals.  At home, we've given her a little box of snacks that she can keep by her bed, so that if she wakes up hungry during the night, she has something right there to eat, immediately.  Dr. Hainline is sending a letter to Superkid's school, to let them know they need to follow my instructions for feeding Superkid during the school day. 
We don't know, at this point, what the long-term issues with this diagnosis will be.  At the moment, I'm content just to figure out how too keep Superkid from having ketonic episodes and migraines.  I'm also grateful to be able to know that some of her food issues aren't just personality quirks.  And I feel incredibly justified in knowing that I was right, five years ago, when I tried to convince some of our original (Connecticut) specialists that there had to be something more going on with my baby than a heart condition--I was convinced that something larger was affecting her muscular system.  I hate to be right, in this case, but it just goes to show that mother's intuition is the real deal.  Trust yourself when you receive inspiration about your children.  I can't help but be astonished by the road that led us to these answers:  visits with multiple specialists, several incomplete or wrong diagnoses, even the brief life of our daughter Lily--we may never have met Dr. Hainline had it not been for Lily.

I'm so grateful for the tender mercies of a loving Father in Heaven, who has given me the opportunity to take care of Superkid, until her mission here on earth is complete.  It is always an amazing experience to accompany her on her journey.  And I'm so, so thankful for the wonderful people at Riley Hospital who continue to provide so much care and support for our family.

By the way, my latest giveaway is still open!  Make sure you enter to win a free Picnik subscription.


  1. Isn't there something just amazing in a mother's intuition? I've seen so many who knew something was wrong with their child long before any doctor would agree. When they heard a murmur my husband was convinced it wasn't a big deal. But I knew that something was not only wrong with her heart, but that it was very wrong. That inspiration/intuition is a total gift from God!

  2. Glad to hear that Superkids appointments went well and that you are getting things figured out!