The Puddles

It has been a rough couple of days from my brain.  For whatever reason, I have had a hard time wrapping my head around this new issue with Ben.  Perhaps it is because I have yet to let myself really cry about it.  I understand that this is not terrible compared to his earlier issue.  But please  . . . I don’t want to compare it.  I don’t want him to HAVE the issue to begin with!  Little boys shouldn’t be worried about blood pressure and salt intake and medication to keep his heart in working order.  And until I get a long moment without the children, I won’t have that moment to grieve for his loss of normalcy.

That thought has consumed me for the last few days.  All I really wanted to do was crawl into a corner and cry, but . . . then there was Madie.

Madie has a slumber party tonight. Her 8 1/2 year old birthday party. She is so excited. She has been planning it for a week.  Making lists. Creating games. Putting together a schedule.  So last night  after an evening of bowling, Madie begged me that I let her go shopping with me for her party.  She never asks to go shopping with me. NEVER. Especially to Walmart. So I said yes. Madie grabbed her notebook with her party plan in it and jumped in the car.  We had so much fun. She got to pick all of the stuff for her party.  She didn’t complain at all when we had to pick out other stuff for the house.  She just kept to her list and checking things off to make sure that everything for her party was taken care of.  Her eyes were so blood shot at 10:45pm when we were checking out.  Poor girl.  But there was this huge smile on her face.  She told the cashier about her party. She told the girl at McDonald’s (she needed a little sugar to continue the shopping journey) about her party.  I love that girl. It was such a joy to hang with her last night.  She reminded me of the joys of life.  Family and taking in the good moments when they come and stocking that feeling of love and joy away for a rainy day when life is not going so well.

I wanted my story and Ben’s story and our family’s story to go so differently.  But it is what it is. I am slowly adapting to the recent plot twist.  It is hard for me to accept change.  Chris says it takes me about six months to adjust to a major life change.  I don’t know about that.  It will take me awhile. But I’ll get there.

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Chris called the cardiologist today to get the results of Ben’s testing.   The reason for this testing was to answer the question: Why is Ben’s blood pressure (B/P) so high after his last surgery? We still have more questions than answers but this is what we learned . . .

The flow to the kidneys is high (it is suppose to be around 70 and Ben’s is around 400). The doctor said that this may be caused by any number of issues including obstruction in the descending aorta.    Usually in these circumstances, the patient would go back to the clinic for an ultrasound of the aorta, Dr. Altman is “tired of all these tests” and chosen to be more aggressive and find out what is going on with Ben’s B/P.  She has scheduled a  cardiac MRI on Sept. 9 at Texas Children’s Hospital which will take a picture of his entire cardiovascular system.   This will help eliminate or answer the questions for the  doctor if Ben’s B/P is a “plumbing problem”  or if it is something else.
All of this is very distracting and hard on us as parents right now.  6 years ago we never thought we would live a life where we go day to day wondering about the safety of our child because of some cardiac issue.  Days like today don’t help.

We do not know  . .
*  what happens if there is an obstruction although our best guess is that we will fix it.
*  what happens if there are no obstructions
*  why Ben has any of these problems to begin with (don’t ask cause we don’t know either)

Ben and the rest of our children DO NOT know about any of this.  Our plan is to inform Ben prior to the MRI  but he will be sedated for this which means a possible IV and Ben has strong feelings about needles.  So hear us out on this one.  Don’t ask Chris or I about this at church.  Call us on the phone if you want to know more but public conversation is not helpful at this point.    We ask for your continued prayers for Ben. He is such an awesome boy who cleans his room sometimes, plays with transformers like a wild genesis, and makes his sisters mad but does not deserve any of this, but must go through it.
Katherine and Chris Lake

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I am trying to put up a bunch of pictures of the summer.  I haven’t been able to get to all of them because we were so busy this summer.  I’ve got a bunch more to put up.  The kids love seeing themselves up on the blog.  I didn’t totally realize why I wanted to put so many posts up until around 5pm when I realized that we hadn’t heard from the doctor yet and I was actually disappointed.  I realize I was trying to distract myself with good thoughts and memories instead of watching the clock.  I’m glad my subconscious has a built-in coping mechanism to deal with stress!  Gordon is spending the day with us tomorrow so I have an awesome way to get through the day tomorrow without thinking of anything but fun.

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“Go ahead and eat your lunch, Ainsley.”

“Freaky, freaky, what?” retorts Ainsley as she throws me a peace sign and puts a smirk on her face. And did I mention that she insists on being called Lena all day today.  Yeah . . . it is that kind of day.

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We spent the day at Papa and Grandma Lake’s house in Brenham.  They found the perfect water slide for my little troop.  No one has to wait.  Of course, they have the best sledding hill for this.  Unfortunately, Ben was building up speeds that I thought would send him into the fence.  We followed up with fireworks at the country club where I tried my camera with the fireworks setting.  It was cool to try it out.  I think they turned out cool.  We had a great time.  From the last water slide picture you can tell that Ainsley was not ready to quit. That’s the mark of a good day.

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Ben

Ainsley

Madie

Waiting for swim lessons to be over

Thank goodness swim lessons are over.  They learned a ton.  Ben swims like a fish now.  Ainsley at least as some success as saving her life. And Madie learned to dive.  A good summer for lessons.  But two hours a day for two weeks was enough for me.

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A month ago, Ben decided to dump half a container of baby powder on his head to look like an old person.  Hilarious, Ben!  Just don’t do it again.  Besides you looking cute it took me forever to get all of the powder out of the carpet and the bathroom.

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This happened on Sunday night at dinner . . .

” . . . and they had a camouflage chair.  They had everything camo,” declares Ben.

“Ben, why don’t you finish eating?  You will have Mom and Dad all morning long and you can tell us everything about Bass Pro Shop then,” begs Mom.

“It’s ok, Mom.  I’ll just finish tonight and then you can ask me questions about it all morning.”

and then Ben kept right on talking. Papa Grace took Ben to the Bass Pro Shop last week for the first time and you would have thought Ben had gone to Disney World.  He talked non-stop about it during dinner.  I called Chris back to the dinner table to listen to Ben go on and on about how awesome it was.  It was good to see Ben light up like that.

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They are all finally in bed.  It has been a rather long day for everyone.  We had so many adventures and the day started so early in the morning that it almost feels like we tried to cram a week’s worth of adventures into one day.

Ben, Chris and I left for the hospital this morning at 6:15am.  We had to turn around once because we forgot Ben’s shoes (when you carry the boy out to the car because he is still sleeping it is easy to forget the shoes) but we still managed to get there by 7:30am.  The doppler took over an hour to complete.  Ben asked at one point why it was taking so long.  I told him that he only had one heart but two kidneys so it takes twice as long to look at your kidneys.  He did really awesome and kept really still until the bitter end.  Every time we have ever had a doppler/ultrasound done, the tech always has to go to the back to check with the doctor to see if he/she got all of the pictures that the doctor wants.  Then they either come back and take some more or they tell us that Ben’s done.  This time she came back to get more pictures, went and checked with the doc again and this time she brought back the doc with her and took even more images. We actually got to see the “man behind the curtain.”  Like on the Wizard of Oz, we actually got to the see the wizard today.  But just like Dorothy we didn’t learn anything from him today.  We will have to wait to talk to our cardiologist.  I don’t like waiting.  Chris says that he already knows that something is wrong (six year old boys should not have high blood pressure and require betablockers and ace-inhibitors), so now he is just waiting to hear what it is.  True.  But hearing only bad news does get old sometimes.  I could go for some good.

The girls had the time of their lives this morning.  Let’s just say it had something to do with meeting the sheriff and learning about taking fingerprints.  Call and ask Madie or Ainsley (for the really dramatic version) for the rest of the story.  They have been telling it all day to everyone they meet.

So we all had adventures.  And to top the day off Chris and the puddles headed to Brenham to spend time with the grandparents while I cleaned the house and then received a tutoring session on a new software program for work.  We are all exhausted from the day.  Everyone has gone to sleep already and with good reasons.  I am going to go lock the car (Madie reminded to do that tonight.  All part of her story for the day.) and go to bed.  Tomorrow will come soon enough.

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