As Our World Wobbles……

What a couple of days. If I wasn’t living this life, I don’t think I’d actually believe someone’s life could actually be this N.U.T.S.

But first:

I want to thank everyone for all of their emails for offers of help, etc. I use this blog as a sort of a journal and sometimes I tend to ‘think out loud’ on it. After my last post we received so many offers to purchase stuff for Parker.


I tried to reply to some of those emails with reassurances that we could put something together for Parker…..but so many of you basically asked me to please shut up and just post a list of things on Parker’s blog……thankyouverymuch.


So here is a link to a wish list I put together for my Mom on Amazon. BUT, remember this list was put together for Parker’s Gam, and there are a couple of things that are eyeball popping-ly expensive. Because, you know, sometime’s Gam’s like to purchase their Brave Hero’s some of the finer things in life :)

Sigh….I can’t get the Amazon Wishlist button in my sidebar to work.
So try this LINK instead.

Most of all, please know that ‘new to us’ is simply wonderful. Don’t feel as though any offers have to be only for new stuff. Really. I had planned on pursuing yard sales for some stuff for Parker.

And Thank You.

Your offers via both emails and comments on this blog have simply made our hearts sing. It is so wonderful to know that we aren’t going this alone.

Mostly it is a list of DVD’s and books ands a few toys that go right along with the lessons we are working with Parker on. Animals and their sounds. Body parts. etc. These would all be great activities to do while he is recovering from this next surgery.

We are also always looking for machine stitched, trach friendly quilts.

But most of all, please keep this Brave Hero in your prayers. That is so very important to us.

BTW, this surgery is set for MAY 16th.


But the really concerning news includes:

A blood test that even with factoring in Parker’s crying during the test tells us that his CO2 levels are outrageously high. This tells us that Parker isn’t getting the proper amount of oxygen during the night because of the issues we’ve been having with his vent.

He will be going in for another sleep study ASAP. His ENT is pretty concerned. This could perhaps be a reason his right heart cath didn’t have quite the results we were hoping for. (!) The vent settings are off PLUS we haven’t been able to keep him on the vent anywhere long enough each night. Parker has severe obstructive sleep apnea.

Yeah. He’s a bit of a mess. But we love him. Every single bit of him.


Parker had a very alarming amount of blood in his upper ostomy bag today. His surgeon is concerned because this amount of blood in his ostomy bag could mean that he is refluxing again.

Severe Reflux can cause bleeding in the ostomy bags. Parker’s crit is already low. I hate to see what tomorrow’s testing results will show.

Parker’s surgeon didn’t realize that his reflux issues were still……an issue. We chose to try a g-tube alone before going the Nissen route. He may need that Nissen after all.

So now Parker gets to go in for more studies on his insides. Fun times, those.


The surgeon brought in pictures from the last testing where they shot dye up through his stoma and followed it via a series of x-rays. (Yeah. I know. OUCH!)

Now, read this carefully. This is important:

The distance between Parker’s tush and the end of his intestines is LESS THAN 1.25 centimeters. (Or was that millimeters? I can’t remember.) The muscles in his tush look well defined via x-ray. Although, you really can’t tell for sure until they spread everything out on the operating table.


The surgeon says that THIS IS A VERY LOW DEFECT. VERY LOW. Parker’s prognosis is EXCELLENT as far as future bowel skills go.

Now, this all leads to quite a few questions I kept asking Parker’s FIRST surgeon. Why was he given the obviously WRONG stoma? Is it possible that Parker could have had this PSARP procedure performed at birth?

And WHY did she constantly insist that Parker’s defect was very high, when I had sent all of his records to specialists at CCHMC and was told that this distance was so very, very slight.

I personally believe that she saw Parker, knew he had Down syndrome, and immediately believed that he would never be bright enough to successfully potty train….so just do the easiest procedure possible and call it a day. I could never prove that, but I believe it.

I won’t go into much more detail on this very public blog. But know that I am putting together a fact file on Parker’s case and after these next two surgeries are done I plan on going to the Powers That Be and laying it totally on the line with them.


My gratitude for today? Our new surgeon. He sees Parker just as another kid. He believes in both me and Parker. And the fact that his skills are top notch doesn’t hurt any either.

Like I told ya. It’s been a day.

If you would like a shipping addy for Parker, just email me at! I’m not sure if I have it on the Amazon wishlist stuff or not. I tried, but with my skillz one can never be sure. Plus, we’d love to simply get things that have previously been loved too! :)

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