Today.

Is Tuesday. Henry slept last night. We finally found the correct combo of meds that help relieve his pain. We can tell that he has some swelling in his abdomen. But we aren't certain how the infection is spreading.
Zane asks smart questions about Henry, when I pick him up from school. Anastasia is tender and wise. They are both well adjusted kids, having a terrible experience. They love their brother. They don't want to see him in pain.
"The bed is sort of scary," Anastasia said upon seeing Henry's hospital bed. "but I see how he needs it."
We set it up in the living room. Not a normal place to set up a bed, but it's the center of our house, and Henry, right now, right or wrong, is the center of our family.

We are so grateful to the folks at hospice. We have learned that many of them have never worked a peds case. That they have children of their own. They are all loving, kind, supportive and compassionate. We mentioned wanting to get married before Henry passes - so Trevecca is now our 'Hospice Wedding Planner'... Everyone at the hospice office, even people that don't have direct contact with our case - are pitching in to help get us married quickly and with some celebration. We should have more details, when where and what-not this afternoon. Our friend Liz is hoping to do the music. We're trying to secure a venue, the rings, and a dress this week. The food and cake are taken care of. We have our ceremony itinerary in rough draft, and the wedding favors are already being made. We had planned a ceremony for August - bumping it up a few months has eliminated the need for all of the extras, but has complicated a few others... It will happen though. Everyone is welcome to join us, where ever it happens.

We have been experiencing a great flood of love and support from our friends and family from all over the world! It helps us stand up straight, move through this with courage and grace and relieves our feelings of loneliness. Thanks to my mom and to my baby cousin Jess for taking care of Lewis and distracting him from all of this. 
We have folks bringing us food. You can sign up to drop off something, or have something delivered too. 
~Elizabeth has set up a sign up sheet online. Sign up HERE.
~Our friends Rose and R are organizing fundraiser at Papa's Pizza. More info will be posted as we get it.
~Our friend Christine felt moved and has made some beautiful candles and is donating the proceeds to Henry's fund. You can preorder through this LINK. <3 I think she has 2 candles left.
~Our friend Fred challenged all of his friends to buy out my shop. He's reduced my stock by about 30%. He's giving them until Friday! It's sort of fun to watch people get excited about feeling useful - until it hits me why they feel the need to be useful. If you want to help Fred sell out my shop HERE's a link! 
~And if you feel the need to donate cash, we have set up a bank account. You can reference Henry Kaplowiz, or Rebecca Fitkin or the account # 521758 Selco Credit Union members can go online. Other folks may need to go into a branch, but I think folks can call and wire a transfer from their bank accnt to Henry's accnt. 
~You can also make direct deposits to my Paypal. tritegreen @ gmail.com (remove the spaces)

We are so grateful for all the outreach. Our hearts are breaking for Henry and our family but our friends are keeping us enveloped in love and kindness. 



I asked Zane how he feels about everyone reaching out to us, "It makes me want to help them, to help other people like us." We already have a few plans for paying it forward. Thank you for inspiring generosity in our children and expanding our hearts.

"Why is everyone being so nice to us?" "Because people feel helpless to help Henry. They love us and want to make this as easy as possible. Because they see themselves and are suddenly grateful for their own health and the health of their children. Cards, emails, money and food are easy ways to show their support and love." "Makes sense."

Our friend Staci has been sharing Henry's story with her children. One of them took it to his classmates. They all painted and drew pictures for Henry. We'll be hanging them up in our little red house. 
If you want to send Henry a picture, he likes bright colors - The sun and rainbows are easy for him to appreciate! 

Much love.

Scheduling Surgery!

Dr. Wadie confirmed our suspicions. After trying to find the right floor, and the right office, we sat in Dr. Wadies office and discussed both procedures, and how Henry will need both. We were informed that Henry's reflux could get worse if we do the Gtube. So the nissan fundaplication will be an eventual need... there are risks to the 'wrap' as he called it. Because the stitching is also attached to the stomach muscles and diaphram, it's possible for the stitches to be dislodged and may need an eventual re-evaluation... He said that we don't <i>have</i> to do the 'wrap' but it's very likely that he will need it.
So, my opinion... the odds of Henry's stitches being dislodged are lower than the eventual need for the 'wrap'... Do the wrap with the Gtube, so that we don't have to go back and do another procedure. If he needs the stitches re-stitched, we'll deal with it then...

Henry has gained weight. Every time we take Henry to an appointment, he needs to be weighted. Have you ever weighed a child that has no muscle control? Well, I have to hold him on the scale, then pass him off to someone so that we can get MY weight and subtract it, to get his. It seems petty, but I hate the scale, and an already stressful appointment, somehow gets amped when everyone in the world gets to see the scale flash an extraordinary amount of pounds on the digital scale... (I'm totally having a pity party!) But, to change the subject, Henry's eating has been more concentrated and successful... We haven't tried any solid or pureed food for nearly two months, and he hasn't thrown up but a couple of times, in those months! So thank goodness for small rewards!

After this surgery we meet with a nutrition specialist, and an OT to discuss a 'feeding plan'. We'll need to coordinate tube feedings with oral exercises, so that there is an eventual removal of the tube, if at all possible. Surgery is just one step in this process, but there is hope and we're aiming high.

Henry will be fitted for leg braces the day before his surgery. He'll probably have the braces, his tube and the final fitting of his wheelchair before the end of the year.

It's almost overwhelming. Almost. One thing at a time. Distractions from life, and the other children - keep my head from obsessing and ruminating on the ins and outs of Henry's issues. Lewis is nearly crawling, Anastasia starts basketball - the quad team, and Zane want to explore Homeschooling options. They'll keep me busy!