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Jackson's Heart
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Jessica [userpic]

We will be spending the next couple days in Milwaukee.  If there is any significant changes with him I'll have Jessica update the page.
His head is very huge right now.  All the fluid he is retaining is settling in there.  He isn't urinating much of anything either.  They did an ultrasound of his abdomen yesterday to see if there was any fluid pooling up in the area.  They didn't see anything.  The doctor did take a needle to that area to see if they were able to get anything out that way.  They were able to get some draining immeditately and that was it.  When we called last night, it wasn't draining any more.
I tried to go to work yesterday for a couple hours.  I never even punched in.  I had stopped to get some coffee at the Whitelaw gas station.  They clerk asked me how I was doing and I said "Okay", even though I wasn't.  This of course had me thinking of Jackson all the way to work, tears in my eyes off and on.  Imagine how I would be at work when all the guys I work with ask me how things are.  I would of been a mess there and told my boss I couldn't work.  They've been great throughout this whole ordeal.  I will try again next week to work and see what happens.
We do plan on getting stuff prepared for Jackson after this is over.  Sara and I have decided to see if we can have Jackson live his next life in the cemetery at the end of the road where we live.  We meet with Deacon Tom on Monday.  We will be contacting the funeral director this morning before we leave for Milwaukee. 
Molly is doing well with everything.  She's being the strong one for Sara and I.  Her hugs are a huge relief and she even pats our backs for us.  I took her for a bike ride yesterday and showed her where we would be putting Jackson.  She knows it as "the place by Courtneys house and where Mrs. Gayle is".  We walked around for awhile, of course she wanted me to start reading what some of the headstones said. 
Okay, so i'm done on this one.  Have a good weekend and we'll talk again soon.
Jake and Sara

I'm so sorry

I lost my son to HLHS in April of this year. I know how excruciatingly hard it is to make your child's "arrangements". We also started looking into things before Kenneth died. It made me feel awful at the time, but in the long run I was glad that we did, because I don't think we would have been capable of any decisions right after he passed. You are all in my prayers during this very hard time.

My thoughts and prayers are with you!!

I am so sorry you are all going threw this, I have posted Jackson on my daughters site for all her friends and family to see. He has so many prayers going up to heaven for him. My daughter was at CHW and they are a wonderful group and I know they always do whatever they can for them. Thoughts and prayers for you, Jackson and the whole family.
Crystal M.

In my prayers!

I have not been down the rough road you are going down, but I will pray for God's peace and comfort to surround you.

Lisa A. Spencer
Grand Rivers, KY
Step-mom to Josh, 8, HLHS, doing great by the grace of God
Josh's site: http://www.geocities.com/darylandlisa/
Josh’s carepage: www.carepages.com JoshuaThomasSpencer
Mom to Alissa, HH, 6.5, and Abbi, HH, will be 5 on June 18!

You all are in our thoughts and prayers...

I am so sorry. You all will be in our thoughts and prayers.

Mom of 4
3 with healthy hearts
1 with HLHS

In our thoughts and prayers

My thoughts and prayers go out to you and your family. Keep your faith in God. Stay strong.

Tracey (Dietrich) Schmidt and family


I am so sorry. We can't even begin to imagine how hard this must be for you. Our thoughts and prayers are with you.

Brevet and Christy Larsen