Day 27 / 7 at TCH

I did not realize we have been here now for one week already until I typed the 7 in the headline. Time sure flies when you are having fun ... right?

There is something I want to add to my post today that I read on Hope's families Care Page and I hope they don't mind that I copied it:

Thank God for Kids

If it weren't for kids have you ever thought
There wouldn't be no Santa Clause
Look what the stork just brought
Thank God for Kids

We'd all live in a quiet house
Without Big Bird or a Mickey Mouse
And Kool-aid on the couch
Thank God for Kids

Thank God for kids there's magic for a while
A special kind of sunshine in a smile
Do you ever stop to think? or wonder why?
The nearest thing to Heaven is a child

Daddy how does this thing fly?
A hundred other where's and why's
You really don't know but we try
Thank God for Kids

When you look down in those trustin eyes
That look to you, you realize
Its love that you can't buy
Thank God for Kids

Thank God for there's magic for a while
A special kind of sunshine in a smile
Do you ever stop to think? or wonder why?
The nearest thing to Heaven is a child

When you get down on your knees tonight
To thank the Lord for his guiding light
And pray they turn out right
Thank God for Kids

Thank God for Kids

Truly, I do wonder what kind of people we would have turned out to be if it wasn't for our kids. They have brought magic back into our life, shown us kindness, do not worry about tomorrow and always have hope.

Today was a busy day again for Connor. He had once again OT, PT and Speech. He got to wear a little helmet for his speech assessment that measured how much air came through his nose when he talks and I am not using the medical term now because I forgot but the flap that is suppose to close when you sound out words other then M or N is not closing for him.

He also went for a group breakfast today with 4 other kids his age that are on this floor which is part of his therapy and seemed to enjoy.

We did have a bit of a challenge with Connor this morning due to him being in a miserable mood BUT we also knew it was not his fault. Unfortunately he got his dose of Solumedrol at 4 PM yesterday and it kept him up until 10:30 PM and then he was woken up for meds and his group breakfast at 7 AM. So he was tired and grouchy...., plus he had to throw up about 3 times :(

Sam and RW stayed until noon which was wonderful because at 10 AM I went to drive Ron and Alexander to the Airport so they could be on their way to Seattle and Anchorage.

The big news for today are that Connor is scheduled to have his port put in his chest tomorrow morning at 10:30 AM. I was told I can watch the procedure and all I have to do to go into the operating room is wear a bunny suit :)

Also tomorrow at noon will be a conference with Dr. Sope and all the different Therapists to give us an up-date as to were Connor is right now and if they see progress already. I am of course hoping to hear if there might be a tentative date for how long they all think Connor needs to stay in the Hospital.

We also got a visit from the Hospital Social Worker to see if Connor or us need any help at all. Which we feel after 4 weeks of living in hospitals we are finally getting the hang of it...

Connor also is back in the game for coloring pictures but to my big surprise Star Wars was not on his wish list. Instead he colored The Cat in The Hat, Thing 1 and Thing 2, and pictures of American Airlines.

We finished today with a Pizza social that one of the Harley Davidson Groups here in Denver sponsored. Which reminds me we also had a visit from the Nutritionist and they are not to impressed with Connor's lack of appetite and eating. It is important for him to get protein in him for his muscles but everything send his way in the form of drinks and shakes he refuses to drink.

So and then I will admit that those three days at home were very precious to me in a way that I did get some wonderful time alone with Alexander plus I have to say I would push my mind to think that Connor was on an outing with Ron and that life was back to what it was before this all hit us in December. The dream of it all was so beautiful that it was almost painful to face reality again and enter through those hospital doors this morning ...

I know my mind knows it could all be so much worse but still at times I can not help to think back of how carefree our life was not even 3 months ago ...

Also, I know I mentioned Hope on my blog before. She is still here with her family in Chicago and I want you all to please think of her and them. I know we do everyday but then we are the lucky ones because we got to meet them all ..

Love,

R A C A