The Puddles

I don’t like tuna casserole.  Probably because my mom made it at least every other week. Probably because I spent years watching my brother cover it in ketchup (Gross!).  Either way I swore I would never make it.  The problem with that is that my husband and children really like it.  So now I am forced to make it for them.  

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We had originally posted a video of Ben on the treadmill.  So Madie insisted that we upload one of her too!  So here it is.

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“Mother!  This is man work.  Why didn’t you call me? ”  He steps in and helps Dad assemble my new rolling cart for the office.

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My wonderful new 8 year old decided that her birthday present was going to a trip to see “Wicked”.   So Ainsley and I went to Hobby Center in Houston and saw Wicked.  She loved it!  Because Daddy insisted we get seats as close to the front as possible and because Mommy waited too long, we ended up sitting in front of each other on the aisle.  She was a little nervous about all of it, but once we got there and got settled she was ok.  A nice group of women sat next to her and talked to her prior to the start of the musical which made her feel even more comfortable. At intermission, she started crying.  I couldn’t figure out why.  She finally was able to spit it out that her favorite song from “Wicked” hadn’t been sung yet and she was mad that it was over before they sung the song.  Once she realized that there was still more of the musical to go, she calmed down and we were able to have a seat.  By that time, the nice group of women sitting next to her had consumed large amount of alcohol and were singing every song and waving their arms like they were conducting the orchestra. The ladies sitting next to me kept trying to get them to stop and apologized to me after it was all over.  The funny thing is that I don’t think it bothered Ainsley at all.   She knew the words to all of the songs too.  Since she has never been to a musical before, I think she thinks that is what every body does who loves musicals!  She had the time of her life!  She told me it was the best day ever!

As a side note . . . the second picture nearly got us kicked out of the theatre.  I had two ushers reprimanding me .  I begged forgiveness and prayed hard!

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An interesting picture of Ben.  Very pensive.  He is a cutie!

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Chris offered the kids a trip to the movies in order to get help cleaning the garage.  2 of the 3 said, “No, thank you.”  I was sent in to negotiate a deal with them, so that he could get some help.    So what is the required payment for garage cleaning?  Madie – $10. Ben – movies. Ainsley – a new pool.  Of course, they worked on the garage yesterday and Ainsley really wanted her reward.  Unfortunately we couldn’t find the pool.  So she and I made a quick trip to the store to get one.  It took three stops to find a small pool for the backyard.  Ben and Ainsley love it!  It was a perfect way to reward themselves after getting all of their chores done.  Madie didn’t want to get it, so she was allowed to watch a couple of episodes of “Bones” on the iPad.   It was a great way to finish the day.  Tomorrow is a day off!  The kids have a lot of plans for their free time!

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The good news . . . 

The tests show that Ben’s heart has had no significant changes.  The growth is still there and the valve is still leaking. But it is gradually getting worse and there is still no need for intervention yet.

The lukewarm news  . . .

The symptoms that he has been experiencing (weakness, headaches, shortness of breath, dizziness, nausea, and feeling “out of shape”) are baffling his doctors. The hard part is that Ben’s symptoms can be attributed to any of his three main issues (heart, high blood pressure, reflux) and we have spoken to all three specialist doctors about them.  So far two of them said that they don’t think it is their issue.  They all deferred to the cardiologist.  Yesterday, his cardiologist said that she is not sure what is going on but that she was going to help us get to the bottom of it.  According to his test results he shouldn’t be feeling any of the symptoms.  But he is.  In true Ben fashion, the doctor asked Ben what he was experiencing and, boy, did she get an ear full.  We just sat back and let him talk.   A sample of his work,

“So how long does this (Ben feeling dizzy and nauseous) last?”

“Well . . .  about an hour.  When I feel sick, I will either go to my mom or lay down in bed. So I’ll be laying down in my bed and then I will get distracted doing something else , like playing on the ipad, and then suddenly I’ll realize “Wow!! I am feeling better!” “

So Ben is going in two weeks for a stress test.  The cardiologist said that she thinks that we need to look at several things:

1. stress test – make sure his heart is working good under pressure.

2. blood pressure – his diastolic could be too low (we always worry about his top number, but his bottom number has been high 30’s/low 40’s). We may have to change meds or lower his dose.

His blood pressure is hard to medicate.  His left arm is 10-20 points lower on the systolic than his right arm. So we medicate him based on his left arm (which is lower). But according to his right arm his medication should be increased because it is way too high.  So the dosage is determined by the numbers in his left arm.  If the bottom number (diastolic) is going too low, then we may have to lower the dose (which could cause the pressure on his right side to be too high) or completely change his medication.  It is truly a puzzling issue.  Have you ever heard of anyone who has a 20 point difference in their blood pressure readings from the left to the right side?  Because of the physiology of his heart, there is a huge difference.

3.  medication – some of the supplements that he takes could be causing some of these issues. But she is less sure about this one.

4.  reflux – his acid reflux could also cause some of these issues.

As the doctor stated yesterday, “Ben is complex.”  His nephrologist has told us many times, “Ben is a conundrum.”  So the good news is that we have a doctor who is trying to help us figure out the puzzle. We are taking Ben to see a new G.I. doctor (the last guy said not to call him until we were ready to do surgery and that is a whole other story) to get a second opinion.   Ben is not allowed to exert himself physically until the stress test (good luck with that).  Then after the stress test, we will do whatever the doctor tells us to do next.

We are grateful that Ben does not have to have open heart surgery in the next six months (I was really scared about that one.) We are grateful that we have an awesome cardiologist who cares about Ben to get to the bottom of this.  We thank God that we live so close to Texas Children’s Hospital and for all of the wonderful staff and doctors who take good care of Ben.

So we are not finished with this road yet.  It looks like we have a few more bends in the road before we will get to our answers.  But I have confidence that we will.

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This is the trouble that I have had to deal with on a regular basis. Since we came back off of vacation, she has joined me at my desk every day while I work. As you can see she is not very helpful. She is constantly pushing off my papers. Leaving cat hair everywhere. And her worst offense . . . Purring so loudly that I swear that the people I’m on the phone with for work can hear it.

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“Do you have a jingle yet?” asks Ben.

“What for?”replied Ainsley.

“You can’t have a lemonade stand without a jingle.  How will anyone know to come to buy your lemonade?” replies Ben.

Ainsley is having a lemonade stand on Labor Day.  She has been planning this stand for a month.  Now her publicist (a.k.a. Ben) is trying to help her get the word out, so she will have some success!

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“Madie why didn’t you tell me how fabulously awesome 4th grade was going to be?!” Ben was legitimately upset with her.  Like she had kept some big secret from him.  All he could do was rave about everything as soon as he got into the car.  It was a good first day.

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