The Puddles

Ainsley wanted her hair curly for Easter. So last night we did a trial run. We couldn’t find any of the rollers that we bought for Madie, so we curled her hair the old fashioned way.

It worked and it looks great!!! Now we get to do it all over again for Easter.

So on Friday, we went to the doctor to find out the results from all of the testing that we had to do on Madie.  Wait, you say.  Are you sure you have the right kid?, you say.  Yes.  Yes, I do.

At Madie’s yearly check up, she failed her hearing test in her left ear.  Thinking that it may be an ear infection, the doctor gave her antibiotics and told us to come back in a month to repeat the hearing test.  So in January we went back and retested her hearing.  She failed again.  So that meant a trip to the ear, nose, and throat doctor . . .

In February, she went to see Dr. Chimenti and his audiologist performed another hearing test, although this one was much more official. She failed that one too.  Not just slightly . . . but significantly.  She is severely deaf in her left ear and she has some hearing loss in her right ear.  So what does that mean, doctor?  It means that we need to find out why.  So she had a couple of CT scans, blood tests, EKG, and other tests done at the hospital.  And yesterday  we heard the results.

Her hearing loss is congenital.  She was born that way.  My mother  and sister both have otosclerosis (another kind of hearing loss), but Madie does not.  It doesn’t mean she won’t get it, but that is not why she has lost her hearing right now.  The doctor doesn’t think that she will loose any more hearing, but we have to go back in 6 months and have it tested again.  After two stable hearing tests, she won’t have to go back to the doctor for another year.  The doctor said she can get hearing aids, but he said we need to wait until Madie thinks she needs them.  Right now, Madie has been using her right ear and compensating well.  She didn’t even realize that she had a hearing issue, so she doesn’t need the hearing aids right now.  Maybe one day. Maybe not.  We are to wait until Madie tells us that she needs them.  He also said that her bad ear is the reason for all of her headaches this year.  When it is loud and noisy (like middle school tends to be), she will get terrible headaches. So the doctor told her to put an earplug in the bad ear and it will help with all of the headaches.

So now for the  “ugh” part of yesterday’s visit, Madie’s EKG result came back abnormal.  Her test said that she had “borderline intraventricular conduction delay.”  Something about a prolonged QT interval.  Not sure what it all means.  Except that it means that Madie has to go see a cardiologist.  Luckily we know a good one.

Why does an ENT do an EKG on a kid with a hearing loss? Because a lot of kids who have a hearing loss as a child have a “syndrome” that also causes other health issues.  So I called Ben’s cardiologist and even though she is not taking new patients, she agreed to see Madie.  Thank goodness. Especially since the idea of explaining Ben to another cardiologist sounds exhausting and frankly . . . impossible.

Madie’s pediatrician called and talked to us about all of the test results.  She reaffirmed what Dr. Chimenti said.  Then she said that children that have this long QT also have siblings with it and that they wanted Ainsley to be tested.  What? Another kid. Really? That was when I just wanted to cry.  I missed work twice this week taking Ben to the hospital on Monday for his visit and Madie to her doctor on Friday.  I have to take Madie to see the cardiologist, Ben to the doctor to follow up for his ADD, Ben to the labs to retest his labs because his potassium was too high, Ben to the doctor to find out about his blood pressure issues (again), Ainsley to follow up for her IBS (or the doctor won’t give us anymore medicine), and that doesn’t include any sick visits that may crop up.  I am tired of the medical system. I am starting to feel like a hypochondriac.   I want to say no to something, but I don’t know what.  I’ve said no to a lot (you’d be surprised at some of the tests/followups that we have been asked to do.), but right now I want to sit on the floor and scream, “NOOOOOOOO!”

That is just my feeling right now. It will pass.  It generally does. I didn’t make up these issues. I didn’t cause my children to have bad test results so that I could go to more doctors.

We just smile at our children and tell them that in spite of it all that these were good test results.  We make the followup appointment for labs and doctor appointments.  We pull out our checkbook and pay the medical bills that constantly arrive at our home. We pray that our children can be healthy. We are thankful that this isn’t worse.   We thank God that we still have our children and that we at least have a medical system to turn to.  And then we go bed so that we can wake up and do it all over again the next day.

So please pray for our little family.  This heart thing with Madie will probably turn out to be nothing, but we will still go through the process to verify that it will be nothing.  Madie is doing surprisingly well under all of this stress.  She is a good kid.    Ainsley is on a power praying regime.  Every night she is talking to God about all of the kids she needs Him to fix.  Levity and laughter are great healers!  Thank you Ainsley for helping us to keep it all in perspective.

We are 45 minutes early to our appointment at Texas Children’s. We are rarely early to the doctor. On time? Yes. 5 minutes late? Yes. Early? Hardly ever.

So early that Ben has time to play on the indoor slide before we get called. Fabulous. Especially since he moaning about the routine blood draw he has to have today. It is good to have a little fun first!!

I made this sign tonight before Madie and I headed out for our umpteenth booth sale.  Chris asked me, “Are you hanging that up on the fridge?” “No,” I thought, but I should.  We are so ready for this cookie season to be over.  Madie has met her goal. Ainsley has met her goal.

Chris has been absolutely supportive this season.  We have been gone almost every weekend and a lot of week days for over a month.  Our troop has sold almost 10,000 boxes of cookies.  That is a lot of cookies.

I say the word “cookies” and everyone’s eyes start to glass over.  We love cookies. We love what they stand for.  And most importantly . . . they are very tasty!  Now we are almost to the finish line.  Madie has the whole cookie sale talking points down to a science.

“You can get 5 boxes for that $20.”

“Would you like to donate your change to buy cookies for the Montgomery County Food Bank?”

I already bought cookies . . .  “Thank you for supporting Girl Scouts.”

“You can only buy cookies once a year.”

One person said, “I will give you two dollars if you don’t ask me to buy cookies.”  Madie said, “Deal.” When the guy came out, he walked up to her and she didn’t say two words to him.  He smiled, said “A bargain is a bargain,” and handed her two dollars (which she promptly stuck in the donation jar).

But it is time to take this vast knowledge of cookie selling and store it away for another year. The girls have earned plenty of money to do all of the great things that they are planning on doing this year.  They are using the money for camping and a big trip to Galveston this summer.  But is also pays for patches, offset costs of other activities, supplies, and maybe an even bigger trip down the road.

So please wish us luck. Or stop by and buy a box.  Either way will be greatly appreciated.

“I’m all ready.  I’ve done my homework. I’ve had a bath.  I’ve got my pajamas on.  I shaved. I put deodorant on. I took my medicine. And I have good posture. I’m ready,” declares Ben.

That boy is hilarious.  How does he come up with this stuff sometimes?

This awesome, fabulous, magnificent, most excellent news!  Ben and Madie are going to Camp Pump It Up!!!!

Ben was invited to attend this camp sponsored by Texas Children’s Hospital for patient with congenital heart defects.  When we asked him whether he wanted to go, he said, “I don’t know, Mom.  I don’t know if I want to go to camp with all of those sick kids.”

“Dude, you are one of those sick kids.”

“Ohhhh. Ok. I’ll go.”

So we finally got the word today, that Ben and Madie (any siblings ages 9-12 are invited too) get to go to camp.  As soon as I got the email, I started to cry.  You know . . . the ugly sobbing kind.  I am so happy for him.  After our most recent visit to TCH, it was nice to finally hear something good to come out of this.  Ben doesn’t really know anyone like him.  He’s met a few other kids, but all of them had surgery when they were first born.  Never in the same boat as him.  I think Ben considers himself pretty normal and rarely focuses on all of his illnesses.  Of course, he doesn’t know any different.  I am so excited for Ben and Madie to meet other kids who have lived lives like theirs.  I know that there are kids who suffer worse than Ben, but Ben hasn’t had it easy either.   I hope they come home with some new friends and some awesome experiences.  And knowing those two . . . they will.

“Mom, does having babies hurt?”

“Yes. Why do you ask Ainsley?”

“I read it in the Bible that having babies is suppose to hurt.”

“What are you talking about?”

“Well, I read that after we ate the fruit off of the forbidden tree that our eyes were open to sin.  That we use to only eat the plants, but once our eyes were open we could eat the beast of the field.  And God made having babies hurt to punish us for listening to the serpent.”

“WHERE are you learning this? Church?  Did someone talk to you?”

“No, no, and no.”

“A movie?  School?”

“No, mom. I learned it all from reading the Bible.  I keep losing my bookmark out of my Bible, so I keep having to start over with Genesis.”

Yesterday was Ben’s biannual cardiology visit.  We left at 6:30 in the morning for our 8:00am appointment only to find out that they forgot to schedule Ben’s echo. So that meant that they had to work him into the schedule!  So our long day turned to an even longer day as we sat around TCH  for hours waiting for the phone call to come for an appointment.  Luckily, we plan for the unexpected and long days(just not this long), so Chris had his laptop and was able to work (yeah!).

But at the end of the day this is what we heard . . .

The growth is back.

His numbers have increased.

No intervention is needed yet because the numbers aren’t bad enough . . . yet.

So in the words of Martin Luther . . .  What does this mean?

The sub-aortic membrane that spontaneously grows inside Ben’s heart under his aortic valve has started growing again.  The doctor doesn’t think that it is as aggressive as the last two times, but it is there.  It is thin but it currently encircles the inside wall of his heart under the valve.  So his heart is having to pump blood through this porous “roadblock” to make it through his body.  This makes his heart work harder which causes thickening of his heart muscles. His aortic valve is still leaking and not working well.  His valve reminds me of a “clunker” car. The kind you see driving down the  street with black smoke coming out of the tailpipe, odd banging noises coming from the engine and the back window has been replaced with plastic and duct tape. The car is still driving, but it is certainly not working as well as 95% of the cars driving down the road.  His aortic valve has only 2 of the 3 flaps working, and it has already been repaired once.  So the leaking is significant enough that the back flow into his heart is coming from as far as the other side of his aortic arch.

She is also concerned about his blood pressure.  Ben has chronic high blood pressure, and ironically his blood pressure is significantly higher in his right arm than in his left (like yesterday his blood pressure was 90/56 in his left and 120/43 in his right).  His hypertension doctor wants us to take the pressure in his lower pressure arm.  But he has been getting a lot of headaches lately.  I didn’t even mention it to the doctor, but Ben did yesterday.  She thinks that his headaches are being caused by high blood pressure.  She said that the blood coming out of the heart branches out and goes into your right arm and up into your brain.  So the echo yesterday showed that the flow coming out of the heart is strong (which explains the difference between the left and right arm) and this blood is going into his brain.  So his blood pressure may be overall low, but the pressure into his brain is high causing headaches.  So there is no change in the medication.  But now we have to watch his headaches and take his blood pressure in both his right and left arm and mark the difference.  Geez.  I have a hard enough time finding a moment to take one pressure. Now two?

So that is the report from yesterday.  Not what we wanted.  Not horrible. But not stellar.  I was just really stunned that the growth had come back.  It just adds one more dimension to this already complex puzzle.  None of the numbers are by themselves bad, but together they add up to unpleasant report.  We go back in six months.  She said that she doesn’t think we will have a horrible year like 2009.  She doesn’t think the membrane will grow that fast, but that is not what happened the last time.  But we will just wait and see.  It is ok to be sad today, but there is nothing I can do about any of this but love Ben and pray.  It does no good to worry.  So we will just live within the rules that we have been given for this game called “life”.   We knew that another surgery was coming, but I think I had hoped for a little longer (like when he was 20).  And I didn’t expect his membrane to grow back (even though the surgeon said it probably would.)

I am pretty good about compartmentalizing my life.  I don’t worry about Ben until it is time to worry about Ben.  We absorb the changes in lifestyle, the numerous doctor visits, the medication, and the daily pressure checks into our lives and now it all routine.  Don’t get me wrong.  I am worrying about Ben, but there is worry and then there is WORRY.  The big-picture-long-term-life kind of worry.  I just can’t do that.  We just live six months at a time.  So right now life is good.  Ben is a riot and still charms everyone he runs into.  Ainsley is still our tiny princess, and Madie is still our young scholar.  Those are the worries that I choose to be concerned with . . . at least until our next visit with the cardiologist.

Ainsley needs to go get her uniform out of the car. So she this is the outfit she picked on a morning where it is 34 degrees outside. Crazy!