Tuesday, August 01, 2006


Whew, what a day. We were on the road for nearly twelve hours and that about wiped out lil' Max...and without Starbucks, it would have wiped me out too! :)

It was a very emotional day for several reasons, but I don't want to go into them tonight. Right now I just want to head to bed. I try to not think of Max's "shortcomings," but today they were there loud and clear....and it was just a little too much. He is so incredibly amazing...I just wish his "shell" (his body) could keep up with his beautiful, determined, loving and happy inner spirit.

In addition to the developmental issues today, we also were experiencing some medical concerns. And we are hoping that tomorrow we don't need to drive back to Seattle. Max is still having some difficulties with breathing, coughing, vomiting, etc. (same issues as this weekend) and the team was quite concerned....especially with the high respiratory rate. We did a blood gas and sure enough, his bicarb was up. They want to see him if he doesn't make improvement over night. My gut is that he will be feeling just enough better that we can avoid that possible hospital stay.

Now I need to close my eyes and turn off my emotions, my concerns, my questions about Maxwell...they will still be here tomorrow. Hopefully he is feeling well enough to give his mommy a happy dance and start our day off on a good note.


Drew said...

One day at a time, Amy. That's all you can do. I'm sorry it was a rough day. I'm sure Max will cheer you up today though, with a big happy dance. I hope he's feeling better.


RebeccaA said...


I hope today is a better day for you and Max.

You're in my prayers dear friend.
Cameron & Nathan's mom

Anonymous said...

sending prayers up for you Amy..Like Drew said, one day at time..Max is a trooper, and he has beat the odds so far. He hasdone things you never thought possible. Each day you are together it is a blessing.

Heather said...

You know, Max is such an incredible little boy on the inside, just think of how you or I (or any adult) would deal if we had his issues. We wouldn't be giving people hugs, kisses, and happy dances, and overcoming monumental obstacles! He is so amazing, and his inner self is so great, it takes a special human to be who Max is. I imagine how heartwrenching it is to watch your son struggle and know that his life isn't going to be what you dreamed, but maybe it will be what he dreams, and you alone are his key to the future.

Lisa W. said...

Things seemed really grim for Kennedy back in the day, too. It seemed SO much for one little person to cope with, I hope it helps you to know how far she's come and the mountains she's overcome. We swam, went on a picnic and a hike today and she's still raring to go. He'll come along, in his time...

Dylan (and Kristy) said...

I'm sorry to hear that you had a rough day. Please know that we are praying extra hard for you and I'm hoping for that big happy dance in the morning.

Let me know if you need anything. If you do have to go down to Children's and get admitted, I'll actually be down there on Monday with Dylan. He has a heart appointment. We can certainly bring you something if you need it...like Starbucks, a happy smile, hugs, scrapbooking supplies, chocolate....

Love ya.


Sarah Key Storrs said...

It really hits home when all the problems and delays are spelled out in black and white in front of you by the Drs. When you are at home, you can just compare your kiddo to themselves weeks, months, or a year ago and think "Wow--look at all he can do." But then to compare to others the same age, it can be really deflating. Max is going to get there--"there" for him may not be the same as there for every other kid and he is definately taking the scenic route--but he will get there.


elle said...

he is a fighter love u all

elle said...

he is a fighter love u all