Rare Genes Day

Today, February 28th, is Rare Genes Day.  Here are some facts about rare diseases.  See the thing is, while it's not uncommon to have a rare disease, they are so different and we are so spread out, that most doctors are simply not familiar with them or their treatments.  So wear your jeans today for rare genes day.  And here are some interesting (to me, anyway) facts courtesy of globalgenes.org 

Although rare and genetic diseases, and many times the symptoms, are uncommon to most doctors, rare diseases as a whole represent a large medical challenge. Combine this with the lack of financial or market incentives to treat or cure rare diseases, and you have a serious public health problem.

Here are a few statistics and facts to illustrate the breadth of the rare disease problem worldwide.

• There are approximately 7,000 different types of rare diseases and disorders, with more being discovered each day
• 30 million people in the United States are living with rare diseases. This equates to 1 in 10 Americans or 10% of the U.S. population
• Similar to the United States, Europe has approximately 30 million people living with rare diseases. It is estimated that 350 million people worldwide suffer from rare diseases
• If all of the people with rare diseases lived in one country,  it would be the world’s 3rd most populous country
• In the United States, a condition is considered “rare” it affects fewer than 200,000 persons combined in a particular rare disease group. International definitions on rare diseases vary. For example in the UK, a disease is considered rare if it affects fewer than 50,000 citizens per disease
• 80% of rare diseases are genetic in origin, and thus are present throughout a person’s life, even if symptoms do not immediately appear
• Approximately 50% of the people affected by rare diseases are children
• 30% of children with rare disease will not live to see their 5th birthday
• Rare diseases are responsible for 35% of deaths in the first year of life
• The prevalence distribution of rare diseases is skewed – 80% of all rare disease patients are affected by approximately 350 rare diseases
• According to the Kakkis EveryLife Foundation, 95% of rare diseases have not one single FDA approved drug treatment
• During the first 25 years of the Orphan Drug Act (passed in 1983), only 326 new drugs were approved by the FDA and brought to market for all rare disease patients combined
• According to the National Institutes of Health Office of Rare Disease Research, approximately 6% of the inquiries made to the Genetic and Rare Disease Information Center (GARD) are in reference to an undiagnosed disease
• Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease

If God had wanted me otherwise,

 He would have created me otherwise.  

~Johann von Goethe

Seizures and HB105

For those who don't think a minute is very long, try watching, holding your child while they seize.  It's forever.  Forever as you wonder if they're going to start breathing again.  Forever as you sit, helpless really to do anything.  Forever as you wonder if this going to happen again and again, and AGAIN in the next hour, two hours, day.

I admit, my personal experience is limited to say the least.  Aaron has experienced three seizures in his life, all within a 24 hour period.  The first, I didn't even recognize as a seizure.  I was that uneducated.  I thought he was trying to cough, over and over and over (yeah, pretty oblivious).  BUT his oxygen needs went from one liter to 8.5 in a matter of minutes, and stayed there for an hour.  Guess what?  We landed at Primary's ER.

While there, he had another one, this one witnessed by a fabulous respiratory therapist who recognized it, pointed it out to me, and watched.  Again, the seizing itself only lasted a very short time, short enough that there was no doctor to see.  But it was enough to send him to the PICU instead of the floor. 

His third was in the middle of the night.  Again, there was only a nurse and a resident, no attending, and after effects didn't show up on an EEG, so it was called, "suspected seizure activity."  And I was educated in protocol if it happened at home.  Because it wasn't "officially" diagnosed, we weren't given rescue meds.  Instead, I was told to make sure we supported his breathing with extra oxygen and bagging if needed, and to start a clock.  If after five minutes he was still seizing, we were to call 911.  Yeah, the paramedics.  Because at that point if he hadn't stopped, he would probably need medication to stop it.

Here's the kicker.  While there are meds to stop/help stop seizures, they don't always work.  And there are some awful side effects to them.  And they don't work for everyone.  Right now there's a bill before the Utah State Legislature called House Bill 105, or HB105.  This seeks to legalize an extract from marijuana that has shown in many cases to reduce or even eliminate seizures.  However, some are opposed to it because it might lead to a "slippery slope."  I wish they would educate themselves.  This extract would have less than 0.3% of TCH, the chemical that causes the high.  Remember junior high math?  That percent sign?  That is an infinitesimal amount.  Ain't nobody going to be getting high off that.

And let's put a face on this disorder.  Remember, my son has only had three in his life.  Many of my friends' children are very different.  One is Jeremiah.  This is shared with his mother's permission.

Jeremiah is a bright, happy boy who has Lennox-Gastaut Syndrome, a rare and severe form of childhood-onset epilepsy.  Up until age 2 1/2, he was a normal little boy, learning and developing like other children.  Then his seizures started.  As they progressed, he got to the point where he had over 300 per DAY.  That averages out to over 12 per hour, or one every five minutes. And the result is that he has now regressed to where he has become largely non-verbal, and dependent again on diapers and bottles.  He is now stuck at about two years old, but in an eight-year-old body.

Last weekend, he ended up at Primary's after seizing for much too long in spite of rescue meds.  Once he finally stopped seizing, he slept for over 24 hours.  These are his mom's words once he woke up:

After 25 1/2 hours of slumber, he woke up.  He had a seizure immediately and after it stopped he restarted.  Then it stopped and restarted immediately again.  It lasted 1 1/2 hours.  They gave him Ativan, again with no result.  They gave him another loading dose of fosphenytoin.  It gave him relief for about a half hour and he has started seizing again. The first time he has talked to me since Sunday and he says "mommy help me".

After this, there was only one more med they could try, and if that didn't work, they were going to take him to the ICU and put him in a medical coma.  Yeah, last resort to controlling the seizure.  And while the med they used did control them, it essentially was a coma.  He slept for six days straight, minus that time he woke to plea with Mommy to help him.  He was so sedated that he didn't even respond to painful stimuli. He is still in the hospital with no end in sight, except for the plan to add two more medications to his regimen that struggles to keep him alive.

HE is the kind of child that HB105 is trying to help.  His parents, and many, many more want their children to have this option.  The same chance that other children have had in states where the drug has been legalized, or those that have moved to those states for that purpose.  No one here is asking to legalize marijuana.  What they want is the extract that can give their children back their lives.

These parents want for their children the benefit that Charlotte, a 5 year old in Colorado, received.  She went from having 300 seizures a week (that's a lot of "forever") to being seizure FREE for a week after a single dose of the extract  

And in case you don't know, seizures aren't just an inconvenience, a bother.  When the brain misfires, it's life-threatening.  It damages the brain, and eventually it kills.  And some of these kids suffer hundreds of seizures a day.  So be grateful for your child, and help another one out.  Make sure your legislator knows that this isn't a gateway to legalizing a drug.  Rather it's a way to save a life, maybe even that of someone you know.

For more on this, you can read an excellent article in the Salt Lake Tribune. 
It has been publicly endorsed by three pediatric neurologists the U.  Yeah, doctors, who want it.
Even BYU has gotten on board with an article about it, and some of the kids it stands to benefit.
Also, there's a facebook page:  Hope 4 Children with Epilepsy
Another article in the Standard Examiner 

And by the way, when you stop to think about it, many, many of the medications we rely on for pain relief and other helps are also illegal if not prescribed.  But somehow, that doesn't stop doctors from prescribing them for those that need them.  And if you've ever had surgery or other challenges, aren't you glad?  Let's help out these families, these children, these precious souls.

It is easy to get a thousand prescriptions but hard to get one single remedy.  

~Chinese Proverb

So Far, So Good

We're almost a week from Aaron's vent changes, and he seems to be holding his own.  Actually, doing even better.

Here's how I think of it.  Back in college, I had classes in the Humanities building (funny place for an Spanish/English major, right?).  Anyway, it was an older building with kinda narrow halls.  Top that off with an auditorium for those massive classes right in a corner.  Let's just say, even for a 100 pound freshman girl, getting through those hallways during class changes was a challenge.  Even getting INTO the hallway could be difficult.

So imagine if you are the blood and blood vessels that are supposed to travel through the lungs.  Except the lungs are full, full way up with air (narrow hallways crammed with other students).  It's really hard to move that blood through, causing the blood vessels to be cramped, the heart to work harder, and sometimes the blood decides to escape through the VSD, the hole between the lower chambers in the heart rather than go to the trouble of trying to get to the lungs to pick up that oxygen.  Anyone ever been tempted to just use that Emergency Exit door??

So when the doctor lowered the tidal volume of his ventilator (think "tidal waves" in the ocean, the breath that's pushed into the lungs) and let him set the rate of his breathing, it cleared those "hallways" out pretty good.  The big question was, is he strong enough after over three years of not having to breathe, to be able to start back up and do it all on his own, all the time?

And it looks like the answer is, YES!  It's kinda weird to hear him when he's asleep.  I've gotten so used to 30 breaths per minute, that rhythm, that it's a bit disconcerting to hear 17-22 breaths, and some are really deep, long ones.  But apparently, that's what he needs.  Sometimes he doesn't breathe quite deeply enough and the ventilator complains, but it's becoming less and less often, and it's usually an every other, or every third breath when he's already breathing relatively fast.  So no biggie.  (Part of me wonders if the vent is confusing rocking movement with breathing motions.)

We went in to get some lab work done on Saturday, just to check things, and almost every one of his numbers was perfect.  The only one that was off (bicarbs, produced by his kidneys) was only slightly off.  Plus, he's started using less oxygen on a regular basis.  Again, a sign that the blood is not taking the easy route, the emergency exit through the VSD because it's just too crowded in those hallways.  What a blessing, what a tremendous answer to prayer.

In Other News:

We're looking for a nurse for this cute kiddo. Tuesdays only, from 7:30 am to 12:30 pm. You do have to have a current license because Alpine School District will be the actual employer, but you get to be Aaron's one-on-one nurse, responsible only for him. Five hours with a perfect soul, AND you get paid for it. If you or someone you know might be interested, please contact me. Thanks!

David had his knee surgery on Thursday, and it's been an difficult time with the pain.  But today, he starts his physical therapy and back on the road towards getting back to his mission in Portland, Oregon.  Please keep him in your prayers.  His goal is to be walking five miles a day by the first part of April.  It's a lofty goal, but one that his doctor thinks is doable.  

Michael is following in his big brother's footsteps and getting his tonsils out the end of March.  I almost want to line them all up on gurneys, and the doctor can simply go from one to the next, yank them all, and we'll have it over with.  Taking out stock in ice cream sounds like a good idea.  

Convert difficulties into opportunities, 

for difficulties are divine surgeries to make you better.  

~Author Unknown

I'll Always Be A Heart Mom

Today is Valentine's Day.  You know, the day where everything around you is plastered with hearts.  My older kids like to refer to it as "Singles Awareness Day."  (Yeah, we can be a sarcastic bunch around here.)  But those hearts, yeah, those cute pink, white, red shapes, they represent the real thing.  That organ inside your body that does amazing work.  It's a simple pump, but for most of us, it works tirelessly, without a break, for 70, 80, 90 or more years.  Just moving along.  No replacement parts, minimal maintenance needed.   

But for some, about one in every 100 people, it doesn't quite work that way.  Those people, kiddos, babies really, are born with something "wrong."  That means that if there are 100 second graders in your kid's school, one of them was born with a congenital (meaning "birth") heart defect.  Really, they're all around you, on your son's soccer team, working at the store, even keeping your kiddo in the PICU breathing while waiting for their own next procedure (really!).  They're heart warriors.  

Many, many heart defects have gone unnoticed, undiagnosed until they've caused damage or even death.  Now there's a movement to mandate a simple, painless, inexpensive newborn test to check.  Named after a precious newborn, Cora, Cora's Law would require a pulse oximetry test for all newborns to check oxygen levels in their blood.  

No pokes, no pain, it uses light to measure, just like when you go to your doctor's office and they put the little clip thing on your finger for a few minutes while they take your blood pressure.  Aaron is actually on a pulse/ox all the time.  It lets us know how much oxygen he needs.  And it can help identify which "healthy" newborns actually need help while there's still time to get it.  You can read more about the details of the testing here.

This month is CHD (Congenital Heart Defect) month.  Kinda fitting that the month where we celebrate love, right?  Here's an essay written by a heart hero.  He says it so well.  And if you want to know what it's like to be a "heart mom," don't miss the video.  Well done, short, and oh so real.  Enjoy.

And share this post.  You know someone who is pregnant or who will be pregnant.  Who knows?  You may help save a child's life, and a mother and father's heart.

Who are we?

Start counting... we're roughly 10 out of every 1,000 people (or 1 out of every 100, if you want a number you can get your head around.) We represent both genders and we are all ages. A million of us are adults, and about 800,000 of us are children.

We've made it through surgeries, hospital stays, infections, Endocarditis, pacemakers, and heaven know what else. We've given gallons of blood, one vial at a time. We've fought back against tremendous odds. We've been so sick that we've scared the world's best doctors witless... and then amazed them even more when we've fought back.

We've celebrated our victories and we've mourned our losses. We know that most of those who came before us died, including 14 of the first 70 to have the Blalock-Taussig Shunt. We know that most of us shouldn't even be here and so we live every moment as if it is our last - because it could be.

We're Cardiac Kids and Heart Warriors. We have an amazing inner strength, but we are terribly fragile at the same time. We refer to our parents as Heart Dad and Heart Mom, and we use those titles as Badges of Honor. Why? Because they DESERVE them. They were the first ones to discover that a heart defect doesn't just break one heart, it breaks three.

We work, we play, we pay our taxes and we live our lives. We're in your community, in your church, in your school, in your office, and quite possibly in your home. We move a little slower, do some things a little differently, but we usually get along without causing a fuss.

We are people living with Congenital Heart Defects.

written by:  Steve Catoe, CHD survivor and power-voice, who passed away November 2010, at 44 years old

MAJOR Changes!

A few weeks ago, Aaron had a cardiology check-up.  It went okay, sort of.  Well, it was actually a little depressing.  His pulmonary hypertension is still crazy high.  And we're maxed out on meds.  And I'm not sure if it was semantics or actual reality, but the doctor also said something that wasn't happy.

His echo came back essentially the same as it's been, so that's "okay."  At least it wasn't worse.  And the blood flow across his VSD is still bidirectional, which means that his lung and systemic (the rest of the body) pressures are still pretty equal.  That itself, is not a good thing.  The rest of us, our systemic pressures (that's what they're measuring with blood pressure readings) are usually about four times our lung pressures.

But then he mentioned that Aaron's lung pressures were higher than his systemic pressures.  I'm really hoping that what he meant was that they were much higher than they were supposed to be, and closer to his systemic pressures.  Given the bidirectional flow of his blood through his VSD, that's probably what it was.

But here's the kicker that really got things going.  He said (reminded me?) that his pulmonary hypertension is not primary pulmonary hypertension.  In other words, something else happening is causing it.  And he said that it was his lung and airway issues.  It's the air pressures inside the lungs.  We've kinda always knows this, known that his need for significant ventilation causes challenges for his heart.  But we've had to balance the need to breathe with his heart function.  (And the pulmonary blood vessels are considered cardiac, not pulmonary.  I know, kinda confusing.  But the blood goes with the heart and the air and CO2 go with the lungs.  Whatever.)

Then he told me that if we were able to put Aaron's heart (and blood vessels) into a body with good, healthy lungs, it would function just fine.  No issues.  We could close off the VSD and life would be good.  Obviously not an option to do that, BUT if we can improve that lung function somehow, it would help his heart.

So here's where the changes come.  Yesterday, we had an "all you can eat" appointment at Primary's.  We saw Special Needs, ENT, Respiratory, and Pulmonology.  Pulmonology was the biggie.  While we were discussing things, Aaron took a nap.  Hey, the kid had been playing all night.  But while sleeping on a CO2 monitor, his CO2's kept dropping.

Here's the deal with that:  our CO2 is what causes us to want to breathe.  It's not the lack of oxygen that makes you need to take a breath when you hold your breath.  It's the buildup of CO2.  So if you don't have enough, you don't want to breathe.

So Dr. T starts playing with the vent, looking at the numbers and his wave form.  And oh boy, did he make changes.  He essentially put Aaron on a BiPAP setting.  For those with CPAP machines that work to help keep the airway open while you're sleeping, that's pretty similar.  If he does drop down to ten breaths a minute, the vent will kick in.  But he reduced the support a TON!

And he kept saying, "oh, I'd really like to just turn this off and see what he does."  But he's going to wait until we get a sleep study before we make any more changes.  And we're also supposed to get some labs tomorrow to check on how it's going.  He did ask me if I was okay with all this.  I assured him that while I'm a little nervous, I'm excited to see if this will work.  And I do have an ambu bag and I know how to use it.  I'm also comfortable enough with his vent to simply change the settings back if it's too much for Aaron.

So we'll see how things go, especially over the next few days as he adjusts to doing all the breathing on his own.  If it works, it will significantly reduce the resistance in his lungs, which means blood will flow more freely, a very, VERY good thing.  Such a blessing for him, for his heart, for all of us.

So here's hoping for happy lungs.

It is not the mountain we conquer but ourselves.  ~Edmund Hillary

Home!

All dressed and ready to leave Primary's.
I love the bib.  He DOES bring Joy!

I'm afraid this is another down and dirty, quick update.  Not a lot of cerebral moments going on here right now.  Exhaustion and all, you know.

Anyway, we managed to come home yesterday.  Just over 48 hours for pneumonia, not bad!  He's better but not "all better."  It's just that he's been transitioned over to an oral (or g-tube) antibiotic, had no more need for his IV, and decided not to need the hospital vent.

In other words, there's nothing that they'd be doing at the hospital that we can't do at home.  We're still having to do CPT (chest physio therapy) quite often, at least every four hours.  He gets a breathing treatment every four hours.  We suction a LOT right now, but at least we're not pulling much blood out anymore.  Every so often we get it, but it's not every time.

We're still having fun with oxygen.  He was actually down just below three liters this afternoon while sleeping, but he's also been as high as 8 1/2 liters, for quite a while.  I've also bagged him once each day since we got home.  Yesterday, he "helped."  It was actually kinda cute.

I think I may be warping my kids.  It was so cute when he was "helping" that I paused to get my phone out.  Andrew asked if I was calling 911 ("again" is what I think he said).  Nope, I'm getting a video of it.  Yeah, 'cause around here, artificially resuscitating someone is becoming par for the course.

I've also done another "emergency" trach change.  And that helped, too.  Really, it's exactly what we'd be doing in the hospital, except the nurses would be doing a whole lot more and I'd be doing less.  And while the doctors were fully supportive of us coming home, they also put much tighter guidelines on for seeking medical attention, like a fever of 38 (100.4) will send us back in.  But we ARE at home.  So it's all good.  And we're hoping to stay here. 

There is nothing like staying at home for real comfort.  

~Jane Austen

Doing SOOO Much Better

Aaron is doing SOOO much better.  He's been on antibiotics for 36 hours now.  His oxygen needs are back down to his baseline. Not his baseline for this past week, his real baseline.  He's been happy and playful.  His x-ray looks better.  It's hard to believe this is the same kiddo that we brought in not even 48 hours ago.

His x-ray has also improved a lot.  In fact, enough that there has been some noise about it being at least partially a stubborn plug that we removed when I did the trach change.  That could have been obstructing part of the lung enough to cause some of the patchiness in the first x-ray.

Wednesday evening

Friday morning!

We're still pulling out blood tinged mucus, but he's only had one fever in the past 24 hours, which responded quickly to Tylenol.  He's also been happy, smiling, and singing his songs.  We're still waiting on labs to see if any bacteria (and how much and what!) grow in his blood cultures and his trach cultures.  Then we'll have to find an oral antibiotic that can take the place of his IV antibiotics.  But things are definitely looking up around here!

After seeing this x-ray, I knew we weren't going home.
Look especially at the upper right side (left lung).

This morning.  There's still some patchiness in
the upper left lung, but it's much better.
And overall, there's much more air
(black space) in both lungs.

Yep, things are definitely looking rosier around here (even if still much colder outside than I'd like).

In nothing do men more nearly approach the gods than in giving health to men.  ~Cicero

Quick Update

Aaron has been sick now since Saturday.  Because he should have been doing better, I tried to pull back on his fever/pain medications so he wasn't getting them round the clock every four hours.  Once again, I forgot to ask him his opinion.  No dice.

By 5:30, seven hours after his last Motrin and skipping the Tylenol in between, he had had it.  He started in with his fever again and was desatting.  I gave him the Motrin quickly, turned his oxygen up, and started doing chest therapy.  He wasn't impressed.  We ended up bagging him on ten liters and also giving him albuterol at the same time.

Now, some have sometimes accused me of being stubborn.  Apparently, I've passed on a little bit of this to him, and he wasn't cooperating with what we were trying.  Last thing on the list to try was a trach change.  So while William continued to bag, I got the trach ready.  Got it done and pulled out a big, fairly thick plug.

Once everything calmed down and the Motrin and albuterol had time to work, he settled back down.  Still a little uneasy, I called a friend who's also a doctor to talk things over.  Frankly, as long as he had his fever medication every four hours, he was looking pretty good, not great, not where he usually is, but okay.

She suggested that because it's Aaron, because he can tip so easily, I should take him in.  Plus, about a half hour after that trach change, we started pulling blood out of his lungs, over and over and over.  I made sure they knew at American Fork Hospital that if it looked viral, if it didn't look like some kind of bacteria, we were going home.

First thing was an x-ray.  I knew when I saw that that we weren't going home. There was a fairly large white patch in his upper left lung.  Their diagnosis: pneumonia.

This morning, he still looks pretty good, as long as he gets his fever meds.  We started in the PICU, but are transferring to the floor pretty soon.  He's on IV antibiotics and most of his labs are still pending.  But overall, since he looks okay, I'm hopeful that this will be one of his shorter stays.

Influenza!!

Yep, we've got it.  Or rather, he's got it.

Last Wednesday, Andrew woke me up early, like at 4:45, because he couldn't breathe.  I took him into the bathroom, started the steamy shower, and watched him.  He was retracting and had a slow capillary refill (way to measure how much oxygen is getting to his cells), so I went for his coat and shoes to take him outside.  While I was gone, he managed to cough up a bunch of yuck (too graphic? sorry) and was doing much better when I got back.  His throat had been a bit scratchy for a couple of days so we'd already put him on Aaron precautions.

I took him in because I figured that if Aaron got sick, knowing ahead of time what we were dealing with would be that much better.  He tested positive for RSV.  Not something that makes this mama's heart sing.  For grade school kids and older, it should be a mild cold.  It was more than mild for this ten year old.  So he got banished to the basement (where the TV and DVD player live anyway).  A few days later, all is good and he was even back to playing futsal without any issues.  All's good, right?

From this...

Um, yeah, and then there was Aaron.  Remember, I'm watching for coughing, congestion, slow onset here.  Not quite how it happened.  I left Saturday morning at 8:30 to run Matthew to a meeting after mentioning that I loved Aaron's resting heart rate of 78-80.  That meant that he wasn't working hard, oxygen was good, blood was flowing freely through those fragile lungs.  Birds singing, blue skies, you get the picture.

I get home at 9:15 and it had changed, big time!  His face is red, scrunched up.  He's pulling his legs up but also acting like moving hurts.  Heart rate was up, too.  Took his temp.  Fever of 38.4 (101.1).  And it climbed from there.  We spent the day bouncing between 38.4 and 39.2, and that was with both Motrin and Tylenol on board.  I started doing albuterol breathing treatments every four hours and simply didn't leave the house for anything the rest of the day.  And he was sad, so very, very sad.  If you moved him, he cried.  If he was awake, he cried.  Sometimes if he was asleep, he was crying.  I could cuddle him in the rocker and rock gently, but that was about the only thing that helped.

To this, in less than 45 minutes.  

The next morning before leaving for church, William asked me when it all started.  As I rehearsed what had been happening, it hit me.  He had the flu.  Influenza.  Classic onset.  And the coughing and congestion, the biggies for him, were due to hit the next day.

I called the pediatrician on call and we got Tamiflu for him and started it right away.  William and David gave him a priesthood blessing last night.  It all seems to be helping a little.  We get a few smiles here and there, but when you look at his eyes, they're still sad.  This morning, the congestion has started.  His lungs sound worse, we're suctioning a lot.  I put in a call (mostly for reassurance, you know, picture a brand new mom and all) to the hospital.  As long as we're maintaining here at home, as long as we can support him, we stay right here.  They do have some bigger guns up there, but they also have bigger germs.

I'm so grateful for my little hospital room set up right here.  Sometimes, I miss the "old me."  The one that didn't know how to monitor so closely, that didn't have the equipment at her fingertips to do the monitoring.  But today, I'm glad for it.  If we can get to Day 5, Wednesday, without having to go in, we should be on the downside of things.

The frustrating part of this is that there is only one place he could have got it.  The incubation period is 1-4 days.  The only place he went last week was to school.  And no one here, and none of my nurses or their families, have been sick. One of his nurses told me that there were at least 2 kids sent home last week from his class, obviously sick and feverish.  One came right back the next day.  District policy, in ALL schools, is that at least 24 hours fever free.  I guess I fooled myself that his classroom would be safer, because all the kids there are severely handicapped, and all the special needs moms I know are germaphobes.  In fact, I'm one of the most lenient I know!

Warning:  Soapbox Rant!
PLEASE, think of someone besides yourself when you're sick or your child is sick!  Yes, I get that it's inconvenient to rearrange your schedule.  I KNOW that.  I LIVE that, too!  Frankly, taking "time off" to spend two weeks at the hospital doesn't do great things for our family's schedule either.  But your desire to not be put out may KILL someone else.  And that's going to cause a whole lot more damage and heartache that missing a few days of work or activities or whatever has to be rescheduled.  Please consider others!!!!


Okay, rant over.  Please pray for our little man.  The next 48-72 hours could be dicey for him.

The greatest wealth is health.  ~Virgil