Wednesday, May 17, 2006


Yesterday we had a review with all of our therapists involved with Maxwell's care....what a team! It has been nearly six months since we began the therapy and we wanted to review his progress and plan the upcoming goals. Unfortunately he still has not reached some of our initial goals, but everyone agrees that he is definitely making good progress. That lengthy hospital stay and his reoccuring illnesses, in addition to his CHARGE issues, have certainly set him back quite far...but all we keep saying is that practice makes perfect. Max will do what Max will do. As my favorite nurse once said, "With the right therapy and lots of mommy love, Max will reach HIS potential and that is all we can ask for...he will do the best that HE can do."

The official reports will be ready next week and my FRC (Family Resources Coordinator) reminded me to be prepared and that it will not be easy to read. Fortunately I am much stronger than I was six months ago and hearing the extent of Max's delays don't hurt as much as they once did.

I remember in the hospital when I was looking at his daily nurses report (each nurse gives a report to the next nurse on their patient) and read "DD" (developmentally delayed) and "deaf." I lost it, totally lost it. I cried and cried...I hated him being labeled. I will always, always remember how much that stung. But today I am a different person and I am well aware of his setbacks/delays (but I am also very aware how absolutely amazing, adorable, courageous and hard working he is!!!) and so HOPEFULLY I won't completely lose it when I read the therapy reports.


Ruthie said...

Just keep repeating those words- "HIS BEST". You have been wonderful through all of this. You have given so many of us quite an example to follow. Take the update with a little sugar and salt if you have too. And then build from there. You and Max will accomplish great things. Look what you have done so far.

Anonymous said...

Swallow, any lumps that form..and know this:

he is where he is supposed to be. he is working as fast as he can to develop as he can..All in the Devine Time. His Devine Time. Your Devine Time..He can't be rushed, and he can be slightly pushed, encouraged, and cheered. In the end it is HIS Devine Time..

Dr.'s can speculate, and give goals..And those are great to shoot for. They teach you, and he so much..But in the end it's YOUR Devine TIME that sets the pace.

Love to you both for the remarkable progress you both have made during this trying and sometimes difficult time..But oh the rewards that come with this. The sweet blessings you've been given.

anne said...


Has beaten his bug? Here's to a healthy Max and a rested Mom!

(Tessa's friend)

elle said...

cool i really wanna meet u all one day