Happy INDEPENDENCE Day!

Likes the walker on cement. :)

Interesting comparative note regarding her development: She is almost 2 yrs younger than her older cousin but actually a little over 6 months older than her boy cousin in the picture. Even her adjusted age makes her more than 3 months older. Of course, her cousin "Vinny" on the left may be older or younger than she... I'm not sure.

Watching the fountains.

Crying fountains after the noisy one finished.

Well, we dodged a bullet on the 2nd and almost had to readmit Kiera, but we did 3 hr nebs for 48 hours and managed to keep her INDEPENDENT and at home! :) She's doing much better today.

SOOO...we got to celebrate her 2nd Fourth of July, but her first INDEPENDENT one at home! Yeah! AND..the cute outfit I found at a garage sale LAST summer in hopes of it fitting this year does, indeed, fit thanks to a decrease in her calories and her GI bug in June. :) We decided to do fireworks at home so she could watch from the garage rather than take her to the big city displays where we would be far from our car and unable to control smokers and others around her.

She enjoyed playing with her cousins and being in her walker in the garage, and she liked the QUIET fireworks, but once some started making loud noises, she kind of hit her sensory overload limit, so I took her inside before the show was finished. It's not surprising since usually around 9:30 PM she starts needing lights dimmed and the TV volume turned down anyway. She has been kind of programmed that way after her first year and 1/2 in the hospital.

The pic with daddy and peek-a-boo video at the top right of the blog home page is from the 4th last year in the hospital. She was at a peak then right before we ended up putting her back in a sedative coma and things started drifting downhill toward our trip to Houston. It's amazing how far she and we have come. Even though we had been through the worst in Feb 2007, we were still in an innocent time of thinking she'd be home before her 1st birthday.

It feels like lifetimes since then, and we still have such a long road ahead before she is not so fragile. Last week my nurse quit, and Tuesday Kiera had a sudden turn and needed bagging 6 times throughout the day just to remind me that she REALLY needs qualified nursing. Thankfully, I was home and not the nurse who quit, because I had planned to lunch with a friend and would have been away when it happened, and I'm not sure the nurse could've handled it. Of course, all of this happened the week I had decided that I might have to take a teaching job for the school year. Without more consistent QUALIFIED nursing, that will not be possible. Those of you with jobs who have the option of leaving your child at a day care or with a family member while you work or with a sitter so you can have a date night should be grateful. It is disturbing when you discover you really are the only one who can take care of your child. After 14 years of business, our family owned restaurant is closing soon. We will be making a new start, but it will take months of government beauracy before we can do that. Be on the lookout for our new found INDEPENDENCE, and keep us in your prayers that we can manage in the meantime and that everything happens in a timely fashion.

Love,

Therese