"What?"

This past week, Eve was on school vacation.  Three of her fantastic teachers and one fantastic classmate came over for a visit on Thursday.  It was a meeting of the mutual admiration society.  Seriously, these folks are so incredible and we are so lucky to have them in our lives.  There was lots of laughing.

Today, after Eve's nap, Josie jumped up on Eve's bed.  She immediately climbed past Eve and sat at the top which is elevated.  She then looked at me like, "What?" 
Eve, of course, thought this was hysterical. 

toot toot

The other morning, Seamus handed me his toy flute and told me it was gross. When I asked him why, he said: "Me tooted on it."
I'm not sure if he meant with his mouth or his butt.....

Happy Easter Birthday

This weekend we celebrated both Easter and my birthday. My parents came up for a visit, and it was a lot of fun. The kids dyed eggs and we had a party for my birthday. Seamus kept us all laughing for most of the time. Saturday, he came down with a pretty high fever and was pretty out of sorts with some moments of being himself.  I think he did pretty well for a temp of 104 and swollen tonsils.  I took him to the doctor Sunday morning (yes, on Easter Sunday - they had office hours) and the rapid strep test came back negative.  He still had a high fever Sunday afternoon, but had a good night last night.  His fever seems to have broken.  He's in a good mood and thirsty.

Here are some photos from our weekend adventures:

Thrilled, isn't she?

Stopping him from stealing my wish!

Once again, thrilled.

RMR and GJ switch

Yesterday, Eve and I traveled to Baystate Medical center to get some things done.  First,we went to the GI's office and had her resting metabolic rate test done.  This will tell us her caloric needs.  I really suspect she's getting a tad too much right now.  It will be a bit before we get the results.  Eve did very well.  The test required her to lay still for 20 minutes under this plastic box, with a drape to seal off the outside air as best as possible.  Of course, the entire time Bowie's Space Oddity was running through my head.  It made me laugh.  I entertained Eve by showing her pictures on her ipad. 

I found the picture of the last time she had this done to show the nurse. Six years makes all the difference.  Well, that, and losing the ability to cry. 

After the RMR test, we headed over to the main part of the hospital to have the gj switch done.  We've done this enough times that I no longer get lost on the way to the pedi procedure unit.  Also, everyone recognizes us.  We had our favorite nurse, Grisel.  They all fuss over Eve, and it's quite sweet. 

The switch went well, and I was even able to make it through signing the DNR without crying (in front of anyone, at least - I teared up in the bathroom). It stinks that I have to sign one each time we are there (even though we already have one that is with Eve at all times).  I'm not worried anything will happen - it's such a minor procedure and she's barely sedated - but it's emotional nonetheless.

Speaking of emotional....
(Before I tell this story, I need to supply some background.  Our local hospital closed with just three days notice.  It's a giant mess and a horrible situation as over 500 people lost their jobs.  Eve's pediatric palliative care program was also closed.  So, she was transfered to another hospice program.  I am not super confident about this new program, but when I met one of the representatives, she gave me a folder of info.  In that folder, there was a pamphlet  from a website for parents of children living with life-limiting illness.  I started looking at it tonight and that's where this story picks up....)

Did you ever have an experience and think maybe you were the only one, or just not realize that it was an actual thing that other people experienced until one day you realize there's an ACTUAL NAME for it????  Yeah, that happened to me.  It's like the world suddenly spun and then snapped into focus the moment I read the words anticipatory grief.  Maybe it's because I don't know anyone else in our situation, but I just never knew that what I was experiencing was normal and an actual thing.  I know that words and names are powerful, but I'm not sure I can describe the intense emotion that is involved in reading those words (and then reading about their meaning)....