Tuesday, December 27, 2011

A Christmas at Home...

Since I last wrote, we've spent many hours with one of Max's doctors trying to figure out what might be going on inside of him, to make him cry and be in so much discomfort.

His GI doctor suggested we get an xray and once he saw the results from that, asked that Max come in to do another scan.  I think at this point we've been in nearly every radiology room in The Children's Hospital.  The scan we did on last Friday was one to measure how quickly his stomach empties when there is food in there.

The tech put nearly a full can of food into his stomach within 5 minutes and then Max had to lay still on a hard scan table for one hour while his stomach emptied.  Here's the thing. . . Max doesn't lay still.  Max is ALWAYS moving, unless he's completely asleep.  So, we got to sit with him and hold his arms up above his head, while the very large straps helped hold him still to the table.  It sounds awful, and we certainly thought we were about to encounter the coming undone of our son, but I think he almost liked it.  He pushed against the straps quite a few times and enjoyed the sensation of them pushing back.  I think it made him feel like his muscles were doing just as much as he thinks they can.

Directly after the test, we went for a clinic visit with his GI doctor.  Thankfully Radiology had read the results and dictated them into the system so the doctor could see.  It was found that Max does have a mild delay of emptying his stomach.  Which we already knew.  We were glad it wasn't significant, and it gave the doctor direction on what to treat.

His doctor thinks that at some point, in all of the "messing with intestines" Max has had in the past year, with 2 surgeries and 1 scoped procedure, that his intestines are just temperamental.  We all have bacteria that moves through, but for Max he thinks it's finding some areas to just get lazy and set up camp.  When that happens, the bacteria start producing extra gas.  That extra gas is getting trapped, and making Max a very uncomfortable guy.  Luckily, there is a medicine that helps.  Within the first full day of doses, he's back to his happy self, and doing all of his potty business as he should.

The question still remains, why does this happen?  Can he be on this medicine periodically - long term?  We'll get through this round and just see.  He had to be on it back in October, for the same sort of funky gut stuff.  It may be that we will add a different maintenance medicine on that will move things through his intestines more quickly, so they don't have the chance to get settled and cause problems.

But for now, we're just happy he's happy.  He's not uncomfortable, and we had a merry Christmas, at HOME!  I'm so thankful that he has such great doctors who care for him.  It's really something incredible when I get a phone call, after hours, from one of his doctors and can hear in the background his own holiday festivities picking up.  You can't teach that sort of care in medical school, and we feel especially lucky that all of his doctors truly do care for him.

We're on the right track, hopefully of getting him better.  And hopefully, with fingers crossed, prayers whispered, and a few shouted, we'll end 2011 without illness and can look to a much healthier 2012.

Now, that you've gotten through all of that, I'll load you with the photos from the weekend.

We really had a nice Christmas, it wasn't a big to-do, which was what we were hoping for.  But, we were happy to be together.

The end of last week, we got a lot of snow.  George loves the snow, and wanted to play in it all day long!

He even got in the igloo that Steve and Abbey made.

And he wanted to show it to Max, who still had a little bit of the grumpies on the day it was built, as we hadn't seen the doctor yet.

Max thought it was pretty great!

On Saturday, we had our big Christmas meal, and opened gifts with family.  Max's cousin Addie was such a great helper to open all of Max's gifts for him.

Max was still feeling a little grumpy on Saturday, and really didn't want me to take his picture.

I finally got him to put his arm down from his face, and to stop kicking for half a second for me to get one.

Christmas morning, he got up and was ready for the fun.

photo (67)

He got this rad light box that he loves.

photo (60)

A set of his very own jingle bells like Ms. Laura brings to music therapy each week.

photo (68)

And a new shirt, which is yellow, has Curious George on it, and says Teachers Pet on it.

photo (63)

Christmas afternoon, we got out and went to Max's favorite park for a long walk.  Before we got out, Max had not been out of the house the entire month of December besides going to the hospital for appointments, or when he was sick.  We thought that was for the birds, so we made sure to get out for a long time in the sunshine...even though there was snow on the ground!  Grammy and Grampy were here for the weekend, so they got to see Max's favorite park too.

photo (69)

All is quieting down now, and the year is nearly finished.  I am working on our "year in review" post, and finding it hard to come through it without feeling sadness for just how much he's gone through this year.  But, being the eternal optimist that I am, I am finding all of the wonderful things that have happened in 2011, and still find myself in a place of gratitude.

No comments: