Monday, August 21, 2006

OUR DAY

I called my doctor today and as soon as the nurse answered the phone, I said "You know that movie Groundhog Day?" She immediately started to chuckle and said "what is the latest Amy? What is Max doing now?" We are trying to find humor together in this most difficult situation! :) Max simply doesn't want to stay healthy for more than a few days...and it can be quite worrisome. But if I got all freaked out everytime, I would have been in a straight jacket months ago! So we try and keep calm about all these ups and downs of Mr. Max's and just go with the flow.

Since he didn't get any worse today, I decided to hold off on until tomorrow for an appointment. I am almost confident he will need to restart some of his heart drugs. In addition to his lung issues, I have noticed he is looking puffy in the morning...which could be a sign of fluid retention. Not good for his lungs or heart.

So to give him a break, we tried to have a more relaxing day with less intensive therapy. Ok, I still made him do some...but I did ease up a little! Our PT appointment went fairly well. He wasn't at his finest, but we still did do some good work. And we ended with a few minutes on the swing. His PT (Jill - she's wonderful!) thinks it is helping with his trunk strength and control. I just like it because he looks so cute and grown up swinging all on his own!!! Check out the photos!

Later this afternoon we did some sensory work in the grass at home. He is NOT liking laying in the grass...but we will keep working on it. To reward him for trying, I let him go crazy on my hair (his absolute favorite activity). He was making so much noise that one of my neighbors came over. She said we looked like we were having such a good time, she wanted to join us!!! Too funny! :)

Then tonight Eliz and I went on a quick walk down the street and did some blackberry picking. YUM, YUM, YUM! How cool is that to be able to walk down your street and pick fresh, delicious blackberries? I was sooo happy! Max kept reaching for my cup of berries and I kept reminding him that someday we will be berry picking together!

It's funny about Max. A part of me wants to shelter him and keep him isolated and safe. The other part wants to expose him to as much as possible in life. I have no idea what the future holds for Maxwell and I want us to enjoy each and every minute we have together. I was thinking about that tonight as we were picking the blackberries. Here I am with Max in the Bjourn without a monitor...and just a few hours earlier, I thought I should take him into the emergency room for his labored breathing. It is such a balancing act! :) I want to be careful, yet I want him to enjoy life. I guess I will just keep relying on my gut instinct...fortunately it's been right on for the most part.

Anyway off to clean the house before the nurse gets here...Max and I made a mess today! It's like a toy store exploded in every room! :)

3 comments:

ang said...

hey there..
saying prayers for little one that there won't be a need to go to the dr. and no need to start up the prednisone.
Blackberry cobbler, blackberry jam..NUMMY!!! Blackblerry's and f/f whipcream. Ok...never mind..now I'm hungry and can't eat.
Enjoy!!

elle said...

yum yum

Ruthie said...

Amy, always go with your gut feeling. That's why God gave it to us. And honestly, yours does seem to be pretty accurate!
Take care-