Update from the ICU

It's been a long day...I wanted to jump on and thank you all for the prayers, and love and continued support that you show our family. I will be updating in the am with a more detailed post, surgery did not go the way we had hoped but I do want to get more details and understand some things before I post them. Kyle is in the ICU and is in and out of sleep, he has some pain and is extremely swollen but he is doing as well as can be expected. His temp is up so we are watching that closely....

Again..thank you...our sweet boy is beyond brave. His spirit and love continues to amaze us every day.
XO
Kate

Quick Update

This is Carissa updating for Kate -

"He's out and stable. We haven't seen him yet but he's in the ICU and doing well."

It has been a very LONG surgery and day for all of them. Please keep them in your prayers. Kate will update more when she has time!

Moved to Wed

Just a quick update, due to an emergency with another patient Kyle's surgery was moved to Wed. The big bummer for Kyle was we didn't find out until after we were at the hospital and ready to go...We have lots of mixed emotions but we are going to take advantage of the next 2 days and enjoy them.

XO
K

Not ready

I have realized through this 5 year process with Kyle that no matter how hard I try I can't stop time, I can't freeze it....So many times this weekend I wanted to do just that, slow down the time, make the days longer. But at the end of the day I know that Kyle needs this, he knows he needs this....he pulled out his suitcase this morning...ready to pack for tomorrow. We have spent the weekend together, doing things that normally we would probably shield him from, like swimming...I was a wreck petrified he was going to slip or something, but he was so happy that it made it all worth it. So this is short, I'm off to play wii with the kids! :) One of my bf's will be updating the fb page and this page tomorrow....as always thank you for your support, love, thoughts and prayers.

xo

K

Oh and yes..the goggles are missing a lenses, but he didn't care, he just wanted to look like his sister! ;)

Wordless Wednesday

Sleepy Ramblings.

I am tired. Should I start a blog like that, I'm not a very good blogger...(do you know they have "rules" for blogging) my guess is I break all the rules, I don't update enough, my writing is horrid, I never edit my pictures...the list goes on and on. I actually had someone tell me how I could be getting more people to my site, more hits, more interest....crazy huh?!

I started blogging 3 years ago, isn't that a long time. I started blogging in a wonderful safe place surrounded by other Mom's with sick children. It was the only place I felt safe to be me. I noticed that now that I blog here I am more guarded. Why?! I sometimes think I am to scared to put the hardest feelings out there, worried about others reactions.

But tonight's its a necessity, We are in the countdown for surgery. Next Monday at 8:30 am Kyle's 14th surgery will begin. I'm sick over it. Literally. I'm grumpy and stressed and feeling pressured to do more for him, love him more, snuggle him more, breathe him in more, rub his face, his arms, his legs. I find myself telling him over and over that I love him, that I'm proud of him....I'm petrified that something will happen to him and there will be no more me after. No more listening to his sweet voice, no more laughing, giggles, hugs. During every crisis someone will say....you have two other children you will survive if something happens to Kyle....but they seem to not understand that we can't replace one child for another....that my connection is different, my entire day surrounds his needs....they have for the last five years....

Kyle is sick, horrible cold, that needs to be cleared up by this weekend or surgery will have to be postponed. Which at this point would be very difficult. He needs the surgery...badly, we aren't moving forward only backward. Our Kyle....needs this.

Love

K

Wordless Wednesday