A Few Things I want to Share

1.  You know how I said I was completely swamped?  I'm still swamped.  The much needed TLC my house needs?  Haven't been able to give it yet, not even scratch the surface.  Why am I telling you this, instead of doing something about it?  Probably because misery loves company.  And I'm behind anyway.  And I'm very practiced in the art of procrastination.

2.  Just to confess and relieve my guilty conscious, despite everything I need to get done around my house, I managaed to find time yesterday to finish my book club book, North and South, by Elizabeth Gaskell.  It's a book best read when the house is quiet (that Victorian dialogue requires undivided attention), but I loved it.  Mrs. Gaskell is a new favorite; I love her books even more than I love the BBC movie adaptations of her books.  If you don't have time for a difficult read, go find these adaptions:  North and South, Wives and Daughters, and Cranford.  (I found them for you, here.)  Watch them with tissues! 

3.  Somehow--don't ask me how, mostly it involves long stories you won't be interested in--I have myself scheduled to do the following over the next three days:  plan and host a cub scout pack meeting at my house, chaparone the fourth grade field trip, and single-handedly throw the first grade fall party. How and why I have myself signed up for all these things remains a mystery, even to me.

4.  Last week our schools had fall break.  The Bionic Man took time off from work, and we took the children on a surprise trip to St. Louis.  I packed in secret so they wouldn't suspect a thing, and the Bionic Man went into great detail about all the jobs he had for them to do during fall break.  They were thrilled to find themselves in St. Louis, instead.  Have you ever surprised your family this way?  I don't know if we'll ever get away with it again, but it was certainly fun to pull off.  I'll go into more detail on our trip another day, because there are great times to be had in St. Louis: it is a fantastically family-friendly city, with many free or low-cost activities.  Our children said that this place was better than Disney World. 

5.  Umm....did you catch that?  My children said something was better than Disney World?  That is the most incredible recommendation EVER, considering that we were sent to Disney World for Superkid's Make a Wish trip.  At Disney World, those children did not wait in a single line, got front row seating at every show, and special attention from everyone they encountered--from Tinkerbell to Buzz Lightyear.  If my children say something is more fun than Disney World, you'd better find out quick what it is.  In this case, it was also cheaper than Disney World.

6.  Remind me to tell you about our Make a Wish trip, sometime.  We are forever indebted to the Wish Foundation.  They really do know how to make wishes come true.

7.  And, while we are on the topic of good things.....Superkid did see a neurologist last week, and we definitely got some effective help, there.  The neurologist knew of a non-habit forming antihistamine that has proven to be really helpful for young children who suffer from migraines.  I'm so grateful!  We've had a week free of migraines since Superkid started taking it, despite all the migraine triggers that are par for the course with family vacations (motion of the car, late nights, change in diet, etc.).  That is HUGE!  I am thrilled.

8.  I made beef and vegetable soup last night, with whole wheat sourdough bread.  I even made a pumpkin-gingerbread pie for dessert.  I felt completely heroic, considering I also had bread rising on the countertop, had made all the phone calls I needed to, loaded the dishwasher, gone grocery shopping, survived a tornado (there is a trampoline on a garage roof just down the street), AND finished reading my book club book!  Apparently, I'm accomplished, but lacking in humility.  Lest you think me a paragon of domestic capability (that Victorian dialogue sucks me in every time) I shall inform you that there is a pile of unfolded laundry in my bedroom soon to be listed as the highest point of elevation in Indiana, and the pie was a mix I found at Aldi.

9.  I hereby promise to share my recipe for whole wheat sourdough bread with you very soon, because--guess what?--you can make it in your bread machine and you don't need to use a sourdough starter.  

10.  Superkid's official birthday was on Saturday.  She's 7 now.  Wow.  Today, while I was straightening up around the house, I found a little birthday card addressed to her.  It had been handmade by one of the children in her Sunday school class.  The outside of the card read, "Happy Birthday Superkid!" and was decorated with colorful balloons, party hats, and a cake.  Opening the card, I found a very detailed drawing inside: a hillside covered with flowers, and two stick figures.  It looked like there was a doorway into the hillside, with a big rock next to it.  The little artist who had drawn this picture had carefully labeled everything.  An arrow pointing to the flowers said "flowers".  An arrow pointing to the stick girl said, "Superkid".  Another arrow pointed to the stick man, "Jesus." And a fourth arrow identified the hill as "tombstone."  There were instructions: "Color it."  The very best part?  Next to the large letters that spelled "Happy Birthday Superkid" was the speech bubble coming from Jesus.  He was saying, "COME FORTH Superkid!"  Not to lesson the sweet, child-like faith of the little artist, but I had a good laugh over that one.  Isn't that the perfect birthday card?  Hallmark, take note!  Forget all the over the hill business, I say we go with, "You may be another year older, but you've got resurrection to look forward to.  Happy Birthday!"

11.  A friend stopped by with her little boy yesterday for a short visit.  Hunter the dog looked extremely disappointed when they departed.  I felt so sorry for him that, as our friends walked down the sidewalk, I lifted Hunter's paw up so that he could "wave" to them.  In the middle of helping my dog wave bye-bye, I realized that I was helping my dog wave bye-bye.  It's not like Hunter is some kind of little pomeranian....the dog weighs 50 lbs.....and I'm waving his paw?  It was a shocking moment.  I've become one of those people, apparently, who treats their dog more like a child than a dog.  Luckily, I don't know how to knit, so you don't have to worry about seeing me and the dog wearing matching sweaters. 

Now, if you'll excuse me, I have to go sew Hunter's Halloween costume. 

In Which the ER Welcomes Us

The school nurse called the other day, just as I was finishing my incredibly long and complex grocery list.  The nurse said Superkid's head was hurting and she couldn't see when she moved her eyes to the left.

WHAT?


That was a new one for our pot of Symptom Soup.  Loss of vision.  And not just new, scary new.

Needless to say, we spent some time at the emergency room, that day.  A lot of time.


And then I spent more time on the phone the next day with our various doctors.  And then we went to see Superkid's opthamologist.  And we'll be going to see a new neurologist, soon.


In the last six years, I've spent a lot of time in ERs and hospital rooms and doctors' offices.  If there is anything I have learned that I can share with you, it is this:


None of the doctors ever, ever look like George Clooney.

EVER.  

But that's okay, because I'll tell you that it doesn't matter what the doctor looks like if he or she can reassure you that your six year old is not having a stroke or suddenly going blind.  (Thank you, Dr. Roberts, opthalmologist extraordinaire!)  Superkid has her peripheral vision back, and we now know that what she experienced is known as a "migraine event."  Not fun, but not permanent blindness, either. 

I'm glad we're home, and I'm glad Superkid is fine.  But we left many, many children behind at the hospital who are not fine and who won't be going home any time soon.  They need your prayers. 

Go here to learn about something else you can do for them, too.

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.

Another sleep study?!?!?

No, I'm not kidding.  Apparently the pediatric specialists in my neck of the woods have great access to pediatric sleep centers.....because last night was our second sleep study in seven days.  With two different children.

If you're response is "Whaaaaa?" you are probably not alone.  It boggles my mind, as well.  Many people go through life without ever spending the night in a sleep laboratory.  I, however, and apparently 3/4 of my children, are not those people.

Li'l Angel had a sleep study back when we were working on getting a diagnosis for her metabolic disease. It was a horrible, horrible night, let me tell you.  I'm not going to go into details, but I will say that during the course of the sleep study, I had to prevent the tech from calling a code.  (She wasn't coding.  She was vomiting.  But Li'l Angel had a unique way of vomiting that scared many a veteran nurse, so I really can't blame the tech.)  The sleep study was helpful, but also sad.  Li'l Angel never went into REM sleep.  I don't have enough time right now to explain why.

Justone had his sleep study a week ago.  I blogged about it already.  (Go back and read "Testing...1-2-3...")  It wasn't at all horrible, and his dad got to go along for it.  I still don't have results back on that one.  I was hoping to get a tonsillectomy scheduled before Thanksgiving if he's having apnea.  Doesn't look like that'll happen, now that the ENT's office says they won't have the results for 6-8 weeks.  That is hard to believe, isn't it?  I'm just a little bugged about it because since we reached our out-of-pocket maximum months ago, all procedures are on the house until 2010!!!  (Not really on the house.  Just paid for 100% by our insurance company.)  Now is the time for a tonsillectomy.  I just wish the sleep lab, the ENT, and Justone's tonsils knew that.

Superkid's night at the sleep lab was last night.  She was very excited about it, thanks to Justone's prior, painless experience.  I spent the night with her.  I saw the room where Li'l Angel had her study, but it wasn't ours.  Superkid's metabolic specialist and neurologist were the doctors who felt strongly about having her sleep studied.  I thought they were up in the night.....until I spent half the summer sleeping in a tent next to Superkid.  She is a mighty restless sleeper.  I could tell you some stories.  (And you know how I love stories.)  I don't have time, but let me tantalize you with this one:  Bionic Man woke up (thankfully) to the sound of the tent zipper unzipping as Superkid tried to get out in the middle of the night.   YIKES!

No, really, I didn't think our doctors were up in the night.  Superkid gets migraines, and as anyone who has ever suffered from a migraine can tell you, no little kid deserves those.  So I'm totally up for doing any test they recommend if it means an end to Superkid's migraines.  Or even finding a way to prevent them.

Superkid cooperated very nicely for her sleep study.  She provided the perfect sample by waking up at 5 A.M. this morning with a migraine.  I kid you not.  It was a doozy, too.  In fact, it got us sent home early from the sleep study.  Superkid vomited as soon as we got to the parking garage, and again as we pulled into our driveway.  And again an hour later as we waited in the pediatrician's office for H1N1 vaccines.  Normally, I would not drag her out during a migraine.  But I made an exception for swine flu.  We've had so much trouble getting the injectable vaccine here, I had to make sure she got it the day it arrived.

Anyway, it is past my bedtime, here.  I've got to go.  But I will say that Superkid recovered from her migraine in time for me to have a much needed trip to the hair salon and for our whole family to enjoy the ZOO BOO.  More on that later.

P.S.  Guess what?  Six years ago, at this exact time (10:10 P.M.)  I was trying to convince my pregnant self that I really wasn't in labor.  The Bionic Man arrived home from his night class (he was finishing his MBA) and provided me with a reality check.  (Dang, he always knows I'm in labor before I do.  Told you he has superpowers.)  So.....tomorrow is Superkid's sixth birthday!!!!!!!!!!!!!  We are all excited to celebrate.