Noel's Birthday!

Happy Birthday Noel!!

Wow I can't believe that she's already two! It's amazing how fast the time flies! I was going to do a photo story of her first two years, but unfortunately with our weekend trip to Denver I have run out of time! On a great note, her Muscle Clinic appointment went great! I got my lingering question answered if Noel will continue to get better or if she might start to digress. The answer is they think she will continue to improve and they think that YES she WILL WALK! That is so exciting! She will still get a motorized wheelchair, which should be here soon, because even when she is able to walk she will probably tire very easily. So I have to say starting out her second year of life looks so promising, we are worlds away from where we were a year ago today!

Thanks to everyone who has been here for us on this journey!

Tina

Noel

Here are some videos of Noel Cruising at her friend Connor's Birthday party, in the last video Connor was pulling her vent for her while she rode on the car, what a gentlemen!!

Some days...

Some days it all catches up with me, some days I realize just how much I deal with and how much I’ve had to learn. Some days I grasp the fact that I am a 24 hour nurse; I’m on call all the time, ready to resuscitate my patient any time any where, my patient, my daughter. Some days I think wow I really am a respiratory therapist, I know more about this ventilator then some of the professionals that come into contact with it. And some days I realize that I’m sad. Today is one of those days where I realize that I am sad. It’s in the little moments, watching kids play at the mall, drink a bottle or run and shriek through the house that awakens my sadness. Will Noel ever be able to play like other kids, will she be able to eat on her own and the one that has been the hardest recently WILL SHE EVER WALK? It’s a question that I thought I knew the answer to before January and that answer was no. Now I don’t know; she is doing so much better but unfortunately her underling muscular condition is a very grim reality, her body’s muscles are wasting away. But has she gotten better? Will her muscle continue to get better? Will she walk? I thought I was ok with the fact that she may never walk, but am I? Can you ever really be ok with the fact that your child won’t be able to dance? Run? WALK?? The answer is no, I don’t think it’s something that you can ever just get over or not let bother you. I am so grateful for how far Noel has come and what a perfect angel she is, it’s just some days; some days are a little bit harder than others.

Happy Halloween!

Here are some pictures of our little bumble bee!

Below: Getting ready to Trick or Treat

Noel and Daddy ready to go,

Noel is even holding her own pumpkin!

Here we are at the mall, there are so many things to look at...

this is so much better than the zoo!

Ok mom I'm done taking pictures,

just let me get to that candy...

Finally, just me and my Candy!!
Alright this is just a funny picture, if you ever wondered if kids really will put plastic over their mouth and nose, wonder no more... ahh the things you can do when you breath out of your neck!