Canvasing the Neighborhood

Do you think it is possible that I could use too much canvas to decorate my house?  I'm on my way to find out, right now.  Testing to proceed in T minus 3 hours. 

I found a sweet sale at Home Depot on canvas drop cloths.  2 for $9.97!  My great room is about to be curtained.  I also found a sweet sale at JoAnn's in the Home Decor fabric.  50% off!  My great room is about to be valanced, as well.  If I get really ambitious, there might be a chair or two that gets slipcovered, too.  Nothing around here is safe, I tell you.

In other news, the waterproof camera died this week.  We were down to the one camera, and it just kicked the bucket.  Guess what that means?  Well, for starters, it may be a while before I post any pictures of all the canvas.  It also means that, sometime between now and Christmas, I get a new camera! 

This has nothing to do with curtains or cameras, but Superkid is home sick today.  She's debuting this school year's first case of pneumonia.  Lovely.  The Bionic Man and I are soooo over all things pneumococcal.  We wish pneumonia would leave our child alone.  It is like the class bully, only worse.  We've had it.  Hopefully the immunologist will have some answers for us at our upcoming visit. 

In the meantime....here's some inspiration I found on the WorldWide Web....just more proof that I can't go too far with all that canvas.

www.creationsbykara.com

 www.discountslipcovers.net

www.bellacottage.com

Adventures with Superkid

If you've recently stumbled upon my blog, you might have come for some of the sewing or craft ideas I've been posting (my goodness, I'm getting full of myself, aren't I?).  It's only been in the last few months that I've had the time, energy, or inclination to do that kind of stuff, and it is fun to share that on my blog.  My blog actually began as an extension of the CarePages I was keeping for my two daughters, Superkid and Lily.  (If you want to know about CarePages, click here.)  Today's post is an update on Superkid and some of her ongoing health challenges.....so no crafts today!  (But I did make that twirly skirt she's wearing.)

Some of you are aware that Superkid was born with a heart defect called mitral valve stenosis.  Her own mitral valve only worked for about a year, by that time it was causing severe enough heart failure that it had to be replaced by an prosthetic (artificial) valve during open heart surgery.  Superkid's new valve puts her at risk for blood clots, so she takes a blood-thinning medication called Coumadin.  (You can read more about that here.)  The other tricky thing about prosthetic valves is that they don't grow.  Superkid's prosthetic valve has to be replaced as her heart outgrows it.  She received her second valve in December, 2008.  It looks like this:

As if that weren't enough of a challenge for one little person, Superkid has had to deal with several others, as well.  

Her heart failure was severe enough prior to her first surgery that she had to have a feeding tube that went directly into her intestines.  We used this at the time of her initial heart surgery to help provide her with additional nutrition and calories that she didn't have the energy to ingest by mouth, both pre and post op.  We used it for several months after surgery to help her get extra calories she needed to catch up.  We also used it for a couple of years following surgery to administer her heart meds, until she could handle taking them by mouth.  All that remains of her feeding tube now is a small, closed hole on her tummy, which Superkid refers to as "my other belly button."  Up until last year, Superkid was followed by a gastroenterologist for issues related to the feeding tube and what was thought to be reflux.  (Turns out what everyone thought was reflux was actually discomfort that seems to stem from pressure changes in her heart and fluid issues.)

A few months after her first heart surgery, we started to notice that Superkid's eyes didn't always track together.  This was diagnosed as an eye-muscle disorder called intermittent exotropia.  Corrective lenses helped a little bit, but the only permanent solution for this problem is--you guessed it--surgery.  Taking a blood thinner makes even the most minor surgeries very complex, so Superkid's eye surgery in June of 2009 put us in the hospital for a good two weeks--longer than her open heart surgery six months prior.  To give you some perspective, the eye surgery that she had is normally an outpatient procedure.  We continue to see a pediatric opthamologist to monitor Superkid's eye muscles and vision.

And then there are the migraines.  Superkid gets migraines.  Severe headache can be a sign of a blood clot or hemmorrhage in the brain--two things that Superkid is at risk for.  She's had a litany of tests (from CT scans to sleep studies) with the conclusion being that Superkid gets migraines for no obvious reason.  They are awful for here, but fortunately they don't last more than four hours (so far).  We are getting better at determining what triggers them: chocolate, excessive juice, sugar, late nights, etc.  She only gets them in the morning, so at least they are predictable that way.  So, we started to work with a neurologist on those.  

Pneumonia is another issue.  If Sariah gets a cold, it more than likely turns into pneumonia.  I've become pretty reliable at knowing when the pneumonia is starting: sometimes I can catch it before there is even much indication of it in a chest x-ray.  She's never had to be hospitalized for pneumonia, although it has sent us to the ER a couple of times.  Anitibiotics and breathing treatments always clear it right up.  It's just that she gets it sooooo often: three times between the first day of school and the first of December, this last year.  This year, her pediatrician turned us over to a pulmonologist.  Everything that was easy to diagnose was ruled out: her pneumonia isn't caused by heart failure, lung damage, asthma, or any obvious immune disorders.  Our pediatric pulmonologist, at a loss for any easy explanation, is sending us on to a pediatric allergist, to see if undiagnosed allergies could be the cause of her frequent pneumonia.

In case you are having trouble keeping track of everyone, here is a list of all the medical specialties we've covered, so far:

Cardiology

Cardiothoracic Surgery

Pulmonology

Neurology

Gastroenterology

Allergy

Opthamology

Infectious Disease (did I mention that Superkid is MRSA positive?)

Nutrition (went with the feeding issues early on)

Anesthesiology

Radiology (for all our xrays and assorted other procedures)

and we're about to add

Psychology

and Child Development

because Superkid just isn't picking up reading the way I hoped she would.  The motivation and desire are there,  but Superkid's frustration is increasing exponentially as we near the end of kindergarten.  When she asked me one day, after a particularly difficult reading homework assignment, "Do the letters jump around on the page for every reader, or just me?" I could tell that it was time to get some extra help.  I've read about studies that show children who have been on heart/lung bypass have an increased rate of learning disorders, so we're going to have some educational testing done.  Whether or not they make a diagnosis, I'm hopeful that through the testing we'll get some tips for helping Superkid learn to read in a way that works for her and her unique learning style.

The other specialty that follows Superkid is 

genetics and metabolism.  

Ever since Superkids was little, and we were dealing with new diagnoses of eye muscles and reflux, I've been asking our doctors, "Is there something else going on?"  I was always told that this was typical for heart kids; many children with CHDs have accompanying other issues that most doctors blame on their hearts.  After all, inadequate blood flow or poor nutrition due to heart failure can cause so many other things to go wrong.  

When our daughter Lily was alive, she had a lot of feeding and digestive issues.  A very bright, caring third year resident was determined to find a way to improve Lily's digestion, so she called on the metabolic expert at our children's hospital, Dr. Brian Hainline, MD, PhD.  He special interests are Inborn metabolism errors, molecular genetics of fatty acid metabolism.   I've been told that Dr. Hainline is one of only about five experts in this particular area of medicine within the United States.  Don't ask me what any of that means; I already feel like I have to get a degree in Chemistry just to be able to converse with him.  Since our first meeting with Dr. Hainline, I've decided that he is one of the most caring, engaged physicians we've ever encountered--in his own, unique way.  Dr. Hainline was able to answer a lot of the questions that we had about Lily.  The answers weren't easy to get, but the knowledge made us better able to care for and comfort her during the remainder of her time with us.  

Dr. Hainline also told me that he'd like to meet Superkid.  He was the first doctor to agree with me that Superkid's various medical issues might not be heart related.  In fact, he believes that many of the children who have CHDs and accompanying health issues aren't necessarily correctly diagnosed: he believes many of them have overriding syndromes that caused their CHDs and the other problems, rather than blaming the CHD for everything.  The problem with this radical concept is that science has yet to discover most of those syndromes.  Dr. Hainline had been able to determine that Lily had some type of metabolic disorder but had not been able to pinpoint which one prior to her death.  He has been working with Superkid to discover if many of her health issues are a result of a metabolic or neuro/muscular disorder.  

We don't have any answers, yet.  Initial tests have been inconclusive.  After our last appointment with him, in December, Dr. Hainline said that he'd like to review how Superkid handled the winter.  Would she miss a lot of school?  (20 absences and 6 tardies, so far, due to illness.)  Would she continue to have pneumonia and migraines? (Yes.)  Would she have a growth spurt?  (Not a spurt, exactly.)  How would she do at school?  (Not as well as we hoped.)  These are the things he'll be reviewing as Dr. Hainline considers our next course of action.  And this will take some considering.  If Dr. Hainline feels that additional testing is needed to make a concrete diagnosis, that testing could get pretty invasive.  We're talking muscle biopsy in a patient on blood thinners.  Not fun.  Painful.  And it is doubtful whether or not an official diagnosis would be helpful.  Treatment for many metabolic disorders is somewhat behind the scientific community's ability to diagnose them.  It's a relatively new field of study.

So, that's where we're at: between a rock and a hard place.

It brings our list of specialists we've met up to 14.  Looking on the bright side, Superkid hasn't had to be treated by anyone in 

Dermatology

Endocrinology

Oncology

Nephrology

Orthopedics

Otolaryngology

Plastic Surgery

Rheumatology

or Urology.

Am I the only one who is disturbed that our list of specialists we've met is longer than our list of specialists we haven't met?  I'm afraid that I've reached a level of experience at which I am obligated to go back and get a nursing degree.  Seriously.

Well, if you've read this far, it's probably only because you are related to me or because you can relate due to your own ongoing medical challenges.  I have to tell you that the reason Superkid continues to consider all her doctor's appointments to be social calls and the reason I'm not yet completely insane is because we have such an amazing children's medical center.  It is staffed by some of the most caring, sensitive, all-around nice doctors, nurses, techs, and staff.  Yes, we've met a few people along the way who didn't make our list of faves, but they've been few and far between.  As homesick as I get for the mountains, I don't know how I'll ever be able to leave these wonderful people who have given our entire family such stellar care.  If anyone reading this needs a recommendation for any of the specialists we've seen and lives in the Midwest (or is motivated to travel to get care from one of them) feel free to leave a comment with your email address.

Head colds, chest colds, and other "fun" stuff

Son J and daughter S both came down with sore throats and runny noses this past Tuesday.  S had a migraine the day before, and had to miss kindergarten on Monday.  She and J both had to stay home from school on Wednesday.

Wednesday was a  big day for E.  It was the "Fifty Nifty United States" Fifth Grade Program.  (It was called a program, but it was really a pageant.  No lie.  The kids actually had to walk across the stage and pose in three different places.  They were referred to as "Mister" or "Miss" [name of the state they represented].)  E has worked hard for several weeks on her state.  Arkansas.  She and I made a costume to for her to wear in the pageant--I mean program.  It had to represent Arkansas.  Our choices were limited:  Huckleberry Finn, Hillary Clinton, Razorback Hog, and Diamond (did you know Arkansas is "the Diamond State"?)  We went with Diamond.

This is the diamond costume L and I created.  Hard to tell from the picture, but there were lots of rhinestones and pixie dust involved to make it very sparkly.  Like a diamond.  L plans to reuse the tutu for her Halloween costume.  More about that later.

I promised E that even though her siblings were sick, we would all be there for her program.  Like a fool I said the same thing when I left a message on the school's attendance line.  Less than an hour before the program, I got a call from the principal.  Yes, the principal.  Informing me that I was not allowed to bring my children to the school if they were sick.

"They will wear masks," I told her.  "They have no place else to go!"  The principal assured me that it was better for them to stay at home.  She was sure that E would understand, considering the circumstances.  "I have to be there," I told her, sounding a bit melodramatic.  "E has been experiencing a lot of anxiety.  She is expecting me.  I have to be there."  I started to cry.  On the phone.  With the principal!  I was both mortified and angry.

I hung up.  I scraped myself together.  It took only two phone calls to find a friend who was willing to let J and S sniffle and watch television at her house.  I wore my sort of skinny jeans with a white tee and black blazer and I even curled my hair, in an attempt not to look like the kind of crazy woman who would cry on the phone to the principal.  I dropped off J and S and made it to the school auditorium on time.  E looked adorable.  She waved at me.  She was thrilled to see me there.  We took lots of pictures.  E was pleased with her performance.

I said good bye to E and drove back to pick up J and S.  On the way, I cried some more.  I didn't want to have to spell it out for the principal.  How do you explain to someone who doesn't know your history why it is so important for you to be there?  The principal has no idea how many school functions I missed because I was at the hospital with L or S.  Or on my way o the hospital.  Or couldn't leave L with anyone else so I could go to the school.  The principal doesn't have a clue about all the things E has had to do for herself and her siblings in the last two years: carry a spare key just in case the school bus beats Mom home from the hospital, pack lunches, fix breakfast, complete school projects by herself because Mom and Dad were too preoccupied....the list goes on.  E is the oldest fifth grader I know.  And she's amazing.  But, like the rest of us, she has her share of baggage.  E experiences anxiety.  Not enough to interfere with academics or daily life, but enough for it to be a concern for me.

Anyway, so I cried.  And even though I cried, I totally understood where the principal was coming from.  Then again, as my sister, Nurse L, pointed out, "It is frustrating to think that there are children much sicker than your own who are attending school.  And no one calls their parents."

After an afternoon of playing in the warm sunshine, it looked to me that S and J would both be well enough to return to school on Thursday.  I was only 50% right.  J was well enough, but S was worse.  Much worse.  We hurried in to see the lovely Dr. B, our pediatrician, on Thursday afternoon.  Surprise!  Swine flu is running rampant in our area (vaccine doesn't arrive until next week), so S was tested for that, strep, and had her lungs xrayed.  Flu and strep tests were negative, but xray showed fluid in the lungs.  ARRRGH!  I've now lost count of how many times S has had pneumonia in the last year.

By that night, my head was pounding, my nose was dripping, and my throat was hurting.  S and I holed up in our extra bedroom with the humidifier, nebulizer, juice, and extra blankets.  We spent Friday together blowing our noses, coughing, and playing in Pixie Hollow.  Friday night, as I tucked S into our sick bed again, she told me, "Today was my most perfect day.  I got to stay home and do everything with you I've wanted to do with you for as long as I wanted."

Somehow, that made my own head cold more bearable.