Archive for September, 2012



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The sad part is that this is the first bulletin board that you see when you walk into the elementary school. Chris told the librarian this week. She caught me in the car rider line today and told me she was fixing it but that she had to wait until the PTA moms went home (since it was their board).

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Of course catching her in a quiet moment was difficult, but she managed.

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Ainsley is dancing because she got her first homework assignment. She loves her school work (this week). I told her that I was taking a picture of her loving homework, so that I could show it to her when decided that she hates homework.


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She is getting so good in art class. Her body of work is becoming so large that I will soon need an art gallery to show all of it.

She insisted that I take a picture of her with her painting inside her art studio. She LOVES art class.

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If you haven’t met Ainsley, she has the personality of someone 10 feet taller.  Most of the time she never laments over her size.  But there are times (usually late at night) she will ask why she is so “little.”  We usually tell her that God made her special that way. If that answer doesn’t work, then we tell her that it isn’t her fault that her parents aren’t exactly tall and none of the women in her family are tall (minus Aunt Debra). Her great grandmas were short. Her great aunts are short.  Her grandmas are short.  Her mother is short.  She has just been given the short end of the stick when it comes to height. But we make up for it in other ways.  (She had a friend in Nebraska who was younger than her by six months who was always way taller than her but her hair didn’t grow as fast as Ainsley’s.  We would joke that all of Ainsley’s growing fuel was being sent to her hair and not her bones!)

So we went to the doctor yesterday for our well child check up (only two months late!) and the doctor says, ” I think we need to investigate Ainsley’s lack of height.”  Really??  Really??????   Her family doctor in Nebraska would tell us it was ok that Ainsley wasn’t even on the growth chart because she was strong and healthy.  When we moved to Texas, she finally grew enough to make it to the 2% on the chart (YEAH!!!). She has stayed there ever since. At least she is consistent!

But Ainsley has a long history of tummy troubles.  We haven’t gone to the doctor about her tummy in over a year.  We have just accepted her tummy as part of who she is.  It hasn’t terribly inconvenienced our lives.  We just work around it.  The doctor said that the combination of her tummy and lack of height could mean she has something more serious.   She caught my ear on that one.   The doctor explained the tests (blood work up and a wrist X-ray).  Ok. I am feeling more inclined to follow through.  The test aren’t invasive. It is really just my time that it being used up.  So we will follow up and get the test done.

The office drew the blood work yesterday (she did stellar and was looking forward to the blood draw so she could get ice cream).  Ainsley said when she found out she was having blood drawn, “I’m glad Ben is here.  He can talk me through the procedure.”  Way to go girl!!

I love how little Ainsley is.  She is in 2nd grade and she still can snuggle on my lap.  It is awesome!  It will not hurt us to go through this process.  But after the last several weeks with multiple doctor visits for everyone in the family, I am ready to hang a neon sign on my neck for every doctor to see that lets them know that I am done with doctors, hospitals, tests, and bills.  In the words of Chris (the question he asks the children each time they come to him injured), “Are you bleeding, leaking, or broken? No?  Then you’re ok.”  This is what I want to hear from the doctor at the next checkup!

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A good day for Ben.

Ben had his name drawn from the entire school for a PTA award. Look what he won. I can’t believe it! He had a yucky day yesterday and then an awesome today!! From the canyon to the mountain top in 24 hours!! What a great day he had!





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Direct quote from Ben. He told me what to write.


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Update on Ben.

So today we finished our second appointment in two weeks at Texas Children’s Hospital.  Today was our visit with Dr. Schwartz at the hypertensive clinic.  Last week’s visit made me bone-weary that i procrastination until this week to update the blog with ALL of the new news on Ben’s health.

Our visit with the Heart Clinic . . . 

The morning did not start out the way I (or anyone) wanted it too.  The traffic was horrible.  The tech was rude (rude enough that we are considering writing a letter to TCH).  The ultrasound tech didn’t say two words to Ben or us during the entire exam.  The nurse who did the stress test was fabulous (almost made us sad that Ben doesn’t have to do that test for awhile).  She told Ben that she knew he was going to be one of her favorite patients.

The end result  . . . no surgery at this time. The leaking in Ben’s aortic valve has increased.  But it is the difference between the elevation of Galveston and Houston.  There is an increase, but it is incremental.  The same goes for the rest of the “watch” areas of his cardiovascular system.  Ben’s stress test went stellar.  He soared on this test!  The only issue was the nurse kept trying to ask Ben questions and he was so focused on the tv show that he wasn’t answering.  I told them that when Ben zones like that, I will put my hand in front of the tv and that will break the concentration. She did it and it worked!  In the end, the restrictions haven’t changed.  Ben still has to pace himself.  Ben still can’t go outside if it is over 85 degrees. Ben still has to drink A LOT of water.  And goes back in six months.

Our visit with the Hypertensive Clinic

We met with Dr. Schwartz today.  His numbers are slightly elevated.  His blood pressure is above 109/60.  But only slightly.  The problem is that in his right arm his bp is around 110-114/50.  In his left arm his bp is around 107-109/50 which is good.  So he is slowly growing out of his current dose of medication.  The question is rather she ups his dose now.  She doesn’t want to make his blood pressure too low.   So now we have to take his bp at home every morning and every day at school.  I already have a hard time getting up in the morning and getting everything done in a timely matter.  Ugh. But we will find time to do it.

To top off the visit the doctor says, “And continue his low sodium diet.” What?  We were really suppose to do that?  Apparently, yes we were.  I don’t add salt to my cooking but I need to change the condiments that we use and be more conscious of the sodium in his diet.  Bad mommy.  Ok. we will do that too. And he goes back in three months.

Afterwards the doctor sent Ben for labs. He doesn’t like this part. The tech started the draw.  Ben got nervous.  The needle blow out of the arm while the tech was trying to reapply the tourniquet.  There was a “mess” everywhere.  Ben looked like he was going to pass out. It was bad.  The tech didn’t know what to do.  She still needed blood so she went to the other arm.  Ben was crying by now.  Then she got his arm, filled the viles, and then before she could pull the needle, he threw up.  We were in a little curtain area.  No room except a chair and a rolling cart. The tech didn’t even move.  I asked for towels and she told me not to worry about cleaning up the floor.  I said, “No. For him.  I need to clean Ben up.”  Geez.  It was a mess after that.  It took forever to get any help to clean up Ben, the floor, and we haven’t even started to worry about the fact that Ben is really  not doing well.  I know it was nerves and a combination of other things but he needed to lay down and he couldn’t even sit down.  I was proping him up.  Ok. ok. enough venting.  He’s home. He has a story to tell.  He has new bandages  for George to match the two on his arm.

In the end.

The visits were good.  He is ok.  We just maintain the current regimen and add a few others to the regimen.  And we will see Texas Children’s again in a few months.

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“Do you think there are toilets in heaven?”

“The Bible doesn’t say.”

“Maybe they go squat on a cloud?”

“I guess that’s where rain comes from!”

“Then I can’t wait to see the moon today!”

Poor Ainsley.  She had no idea that she made a funny.  But Dad, Mom, Madie, and Ben were laughing up a storm.  It took awhile to stop.  She never did understand.

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