Some good, some fun, and a fast trip back to reality

We finally heard from the National Institute of Health. They think that Max is a great candidate for their research program and the ball is rolling on his admittance to the program. It was so nice talking with someone who knew all about this disease and finally validated all my fears. We will have a team of doctors that are experts in this disease and they might be able to help our boy.



Today it rained! I was thrilled with the free water for my garden and the nice cool temperatures. We had a nice lunch with our good friend Lindsey and then came home to sit on the patio for a bit. Brandi, Drew, and Lauren came over soon after we got home to pick up some of my yummy canned goods. We were all hanging out on the patio cutting up with the boys and having some laughs. It was a much needed distraction from life. It started to rain really hard and the boys and Lauren (she is 7) went running out in the yard to play in our first rain storm all year that didn't include thunder and lightening. Max was having a blast and stripped down to his undies. They were having so much fun and I decided to join. Brandi grabbed the camera to document our fun! Lauren and I ran all over the yard and then I made a mad dash for the mud puddle in the yard. It was so beautiful. Fresh mud! Does it get any better? I ran and jumped as hard as I could right in that puddle. Water and mud splashed everywhere. The boys thought it was hysterical. They soon joined and we were splashing and jumping and getting filthy! It was such a nice break for all of us and the first time I have allowed myself to cut loose.

I know it is a little blurry but it was so much fun!

After getting all the boys in the bath and rinsed off, I came in and downloaded all of Brandi's great photos to my computer. The fun of the day seemed to be zapped out of me as soon as I saw the pictures of Max. I could count the ribs sticking out of his back and his shoulder blades were sticking so far out that it was scary. The reality of his disease seemed to hit me all over again and it was hard to keep it together. He is so hungry all the time because he isn't getting anything from the food he eats. My sweet boy is starving and I can't do anything to make it better. As a parent all you want to do is protect your child and make sure that they are safe and happy and not in pain. Feeling helpless as a parent is not a good thing. I hurt for Max. We have one week until his surgery consult and I am praying there is little delay in his actual surgery.

We need lots of prayers this week. Prayers for a Max that doesn't hurt, prayers for a baby that isn't getting everything from his mother because she is so preoccupied with his big brother, prayers that the doctors don't delay on surgery, and prayers for me and Chas that we can keep our sanity and patience in this stressful time.