Shhhh.....

Happy Valentine's Day!

I'm back!  And since the Bionic Man doesn't read the old blog on a frequent basis, I can tell you that I'm headed off to surprise him for Valentine's Day.  I haven't quite figured out what the surprise is, yet....but I'm thinking part of it will be 13 large balloons in his very small commuter car.  Good times!  

Since she's home from school today, Superkid will be my special assistant.  My special assitant and I will also be heading to the doctor and the lab and hopefully not to the hospital, but that is another story.

I Have no Formula for Winning the Race

Perseverance is not a long race; it is many short races one after another.  ~Walter Elliott

Last week, Superkid and I spent a day visiting with doctors.  Superkid had three specialists that we needed to have follow-up visits with, and somehow I was able to fit all three appointments into the same day.  It was a long day for both of us, shuttling between two downtown clinics at two different hospitals, with a couple of loooong waits in various waiting rooms.  No tests--which was nice--but a long day, nevertheless.  

Our follow-ups were with immunology, neurology, and genetics/metabolism.  Immunology was completely unproductive in that the battery of tests they had done provided no answers to why Superkid gets pneumonia so frequently, but productive in that the tests did show that Superkid has a healthy immune system, so we can cross immunology off the list of specialties that follow her.  The neurologist had some additional tricks up her sleeve to help combat Superkid's migraines, and I feel like we're seeing some improvement with those.  And genetics/metabolism was, like always, a full semester of advanced bio-chemistry fit into a single hour: extremely intense and very educational.

Can I just tell you that I am deeply grateful for Dr. Hainline, our metabolic specialist?  The man is my hero.  He never fails to have answers for problems with Superkid that have troubled me for years.  Dr. Hainline's answers don't always make the problems easier to deal with, but they give me something to hang on to, something to use, and sometimes even something to blame.  I am absolutely certain that one of the greater purposes of our Lily's brief life was to introduce us to Dr. Hainline.  

Case in point:  the immunologist we met with earlier that day was not exactly sensitive or sympathetic.  Also, I'm pretty certain he wasn't big on reading patient charts before walking into exam rooms, either.  His use of the phrases, "We've just wasted $2500 of lab work to prove to you your child is normal" and, "Go home and be thankful your child is healthy," were proof of that.  

After a very different meeting with Dr. Hainline, in which he had answers to all of my concerns, I drove away in my mini-van and cried.  I knew, without a doubt, that had it not been for Lily, who introduced us to Dr. Hainline, that I would be taking Superkid to specialist after specialist, looking for answers, and getting both sympathetic and unsympathetic responses that amounted to, "We don't know."

It overwhelms me.  Not just the recognition of how Lily's time with our family continues to have meaning and impact.  But also the recognition of how much love and sacrifice must have gone into Lily's decision to come to earth in such an imperfect body.

I need to take a deep breath and go get some tissues.  I'll be right back.

Okay.  So, I'm gradually learning more about the implications of metabolic disorders, particularly mitochondrial disease, which is what they suspect Superkid has in a mild form. I'm finding it much more difficult to educate myself about mitochondrial disease than it was to educate myself about congenital heart disease--for one thing, mitochondrial disease is so new and the various ways it presents itself are so different; there is no road map.  I'm also finding it much harder to discuss Superkid's mitochondrial disease with people.  As difficult as it is to discuss the possibility of future heart surgeries with others, at least we know what that future is and what it entails: we've done heart surgery,  so have a lot of other families;  it's very serious, but it is understandable.  I don't know what to say about mitochondrial disease, on the other hand; not only do I barely understand what it is, but I have absolutely no idea what a future with mitochondrial disease holds.  It's taking me much longer to adjust to this diagnosis and learn how to deal with it than it took when we learned about CHD's.  

I guess that is why I started this post with some thoughts on running races.  This is no short sprint I am running, as a mother.  I'm pretty sure it is a marathon and I've already lost a couple of toenails.  Then again, perhaps I'm not the one running this, but the one being pushed, Team Hoyt style.  For I have to admit, I'm not naturally inclined to accomplish the things that I have, thanks to the strength and well-timed nudges of my children.  And when I look at it that way, how can I not be grateful that they are willing to let me accompany them?

       

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.