Naughty

Yah...Big (aka Kyle) has been naughty. Super naughty..and while quite honestly when he's naughty I secretly cheer (he wasn't naughty for 3 1/2 years!) the last two days I have not been cheering..(secretly or otherwise!)
I can't figure out what it's all about he has had a change in meds...he has been a little under the weather, he hasn't been tolerating his g tube feeds well...I mean really this could all add up to a little 4 year old who just wants to be pissed at the world. Can't really blame him! :)
We should hear more from his Dr's on Tuesday or Wednesday....looking for a date to have the j tube placed and a muscle biopsy done.

So send us some patience...and maybe a big ole glass of wine for the Momma! ;)

Hugs
HAPPY MEMORIAL DAY...thank a soldier today! They have given us more than we realize.
Kate

Miss me? :)

Life has been insane...literally. Two weeks ago my grandmother went in for a routine colonoscopy and the doctor ended up perforating her bowel which required immediate surgery. She came through it like a champ but it was a very tense couple of hours. The next day my step Mom went in for surgery, and luckily she also came through amazing. Kyle's been on and off sick and last Monday am my laptop fried. I have to say not having Internet access for 4 days was brutal! ;)
I'm sorry for not posting more often over the last 2 weeks...it's been one thing after another...Kyle's new meds are not working and it seems as though things right now things are actually worse. I got a call from his Doctor here in Maine with unwanted news and her request for Kyle to under go more invasive testing to try to rule some things out. She is concerned (boy I hate when dr's use that word) that his stomach over time has shut down. That this MAY be a progressive thing and there is a concern that his bowels will start to do the same thing. It took me days to process this in my head...I'm still not sure on where I stand. We need answers, even if we don't like the results, Kyle deserves that.
So no new pictures...I'm borrowing a laptop until I can get a new one on order..
Hugs
Kate

Prayers for Emerson

http://cotaforemersonw.com/node/35

I have been following Emerson's story for almost a year, 2 weeks ago she received her second full bowel, kidney and liver transplant...things are not going well...I ask of you all to keep her in your thoughts...Her Mama has been in the hospital with her for over a year, far away from their home and family.

Squeeze your babies tonight a little harder....

A whole world outside of our own.

When Kyle was in the NICU, nearly three weeks in to our 9 month stay Mark convinced me to meet Alex and he on my way home from the hospital for dinner, I remember sitting down at the table and placing my drink order and desperately trying to hold back the tears. I reached down to pick up my purse to check my phone for the 10th time since leaving the NICU and I snagged my Hospital ID NICU band on the chair and it fell off....I scrambled to grab it and realized that I had stopped breathing, tears were uncontrollable and I remember looking at Mark so desperately, wanting and needing him to fix it and put it back on my wrist. It was in that moment as I looked around the restaurant at all those that were sitting there quietly eating their meals who were completely unaware of my anguish when the harsh reality of the world continuing on without me slapped me in my face. I had this feeling of rage...I wanted to shake some of them....how could they not know our baby who should have still been in my belly was in the NICU fighting for his life.

No matter what happens in our lives, the world continues to move on with or without us. When your the mother of a child who struggles or who is sick. The mother of a child who fought to live, who fights to breathe, to stay healthy. Their are many moments when I so need the world to stop just for a few minutes so I can catch my breath...or to stop so I can snuggle the kids a minute longer..or to stop because Kyle just stopped playing trains to tell me that he loves me. I so want those moments to last forever...I know they can't...really I know I'm all over the place right now. Some thing is up with Kyle....he's tired and very thirsty...small loss of movement in his right arm when he runs...all things that for Kyle can be concerning so we'll watch him closely and pray, and hope...

Our March for Babies walk is tomorrow....it's going to be a great day!

xoxoxo

Kate