On the Road Again

Well Noel is traveling again... not alone of I'm with her of course. This time we have traveled almost 650 miles to Kansas City, unfortunately we have come for a funeral. My cousin Matthew, who was a year younger than me, lost his life early last Sunday morning in St. Louis, MO. He left behind a wife and a beautiful daughter who is only six months old. So we came to be with our family in this very hard time. (I have to say as far as traveling with a trach vented baby I might be becoming quite the expert.) I would truly appreciate if you would keep my family in your thoughts and prayers this weekend.

Kids Street

So Noel is scheduled to start Kids Street (a special needs day care) in a few days, up till now I have been really excited. I’ve been thinking of all the great things she’ll be able to do, she will get to socialize, get therapy and have experiences that don’t just include me. Well last night I could barely sleep because I was overcome with such a feeling of worry. What if she gets sick, what if the nurses don’t suction her and she plugs off, what if she is crying and she get’s ignored because no one can hear her? I suppose that some of the worry is the same any mother would feel, but for me it’s hard to let someone else be responsible for Noel. Since the day she was born I have been her primary care giver, sure there have been times when I left her with people I really trusted, but that’s only been four people in her whole life (thanks Alissa and Heather!). I hope these are just jitters and not my motherly intuition telling me that this isn’t where she should go. I was thinking we just have to take it one step at time, if it doesn’t work for us we can always try something else.

It's amazing the feeling that comes with being understood. We had a picnic on Sunday with some amazing families who's children also have trachs. I felt so normal for those three hours, I didn't have to explain anything to anyone I was just understood. All the kids had lunch together, tubes and formula was on the menu. I was even able to share my homemade formula recipe with the other moms, something that is usually useless in any other conversation. This was my first experience of a support group and now I understand why they are so important:
1. Sometimes it seems like not even doctors, the ones who are suppose to know everything, don't truly understand what you go through or what you're trying to tell them, but when you get around other people who live what you live day in and day out they can't help but understand you.
2. I think it helps to ground all of us and help us reflect on the journey we walk everyday. I looked around at all the other families there with so much respect and I feel honored to be a part of such a unique group of people. I also feel so blessed to be able to meet all these incredible children, they truly are special and you can't help but notice when you get to be around their sweet spirits!

Home Sweet Home

Wow we have already been home for a week now and what a week it's been! Noel has been doing great, besides not sleeping to much but I can't really blame her with all that's going on. We have been blessed to get to visit with all of our many friends here in Grand Junction, I didn't realize how much I missed home until I finally stepped foot in the door after such a long time. I feel like a completely different person though, I never knew how much my life could change in such a short time. Noel is a different person too, being here makes me realize just how much she has grown and changed since she's been vented. It's amazing what proper ventilation can do for a person! Here are some of the pictures of our trip so far:

Below: Noel's is palying at the mall on an airplane, she liked it so much she didn't want to get down!

Here is Noel and her Grandma (Scott's mom) at our friends lake, Noel wasn't to fond of the water, but she had fun anyway!

Noel would rather play in her duckie tub instead of the lake, we couldn't

get her out of here either!

Here is Noel in her carseat saying "Hi" to everyone!

Going Home?? Can it be?

Well it looks like Noel and I will finally, after 7 months get to go HOME!!! Well it might just work out that this weekend we will get to go home for a short visit, or good bye! I'm so glad, I've secretly wanted to go home for a long time, but I haven't that it would be possible. So we'll see if it works out or not but for now even just the thought is very exciting!

Tossing and turning

Last night I had an epiphany... Noel can toss and turn on her own. I know this may sound like no big deal, but I started to think that it was just in April when her nurses or I would have to reposition her every three hours so that one side of her body wouldn't fall asleep. Now she is able to reposition herself whenever she feels like it. I realized this last night when she kept tossing and turning and kicking me. She finally woke herself up around 11:30 pm and because of an irritating diaper rash she stayed awake until a little after 4:00 am. When you're up that late you really start to think of things, sometimes it's easy to look over all the little improvements Noel is making in the busy day time but at night I have more time to reflect. It is absolutely amazing how much Noel has improved since she has been on the Vent, I can't even imagine where she'll be in six months form now, she's already doing things that at one point I thought were impossible. Sometimes it seems like the vent has opened up a whole new world of possibilities for Noel!

Fun in the Sun

Noel had a great time swinging with her cousins!