GUILD KICKOFF A GREAT SUCCESS!

Thank you everyone soooooooooooooo much for making the Mighty Max Guild kickoff such a wild success! The final tally is in and we exceeded our goal!!! We raised $15,000 for Children's Hospital Uncompensated Care Fund! Very impressive everyone! Thank you attendees, donors and businesses!

Max poses with a few members of his fan club! They read the blog regularly and were so excited to meet sweet Max in person. And just how cute are these t-shirts? Nearly all 100 attendees wore them that night and the Treasury staff proudly sported them every day the month prior. So fun to see everyone "hearting" Mighty Max!

(Unfortunately Max couldn't come to the actual event - I was too nervous with so many people there, but I did bring him by after an OT appointment that afternoon before the event to meet a few of his fans!)

Dan Mello entertained the audience with his personal tribute to my lil' guy, "Mighty Max: The Unstoppable Boy." It brought smiles and tears to everyone! Thank you Dan...I absolutely loved your vision of Maxwell running around and being very happy!

(Dan sent me the CD today and Max and I listened to it a million times on the way to his various appointments...I cried and laughed! Such a wonderful tribute!)

Here are two of Max's nurses from Children's. Wakara (on the left) was Max's primary nurse on the floor and they always had such a special connection! So nice of them to come and support our event! We had so much fun together! Thanks Wakara and Debra! :)

For more photos, visit the Treasury of Memories blog: http://www.treasuryofmemories.typepad.com

THANKS AGAIN EVERYONE!

And if you were not able to attend this event, no worries! You can still support the guild for Children's Hospital and Regional Medical Center by sending your tax deductible donation to:
The Mighty Maxwell Guild

3204 Illinois Lane

Bellingham, wA 98226

Or perhaps we will have another event later this year and you can get involved then! We appreciate your commitment to Children's Hospital and look forward to your help in ensuring each and every child has access to quality health care. :)

*HEADS UP* I am also hoping to organize a fundraising drive for The CHARGE Foundation later this year...they desperately need funding for important research projects, information distribution, outreach, and conferences. If anyone has any grand ideas, let me know! Thanks!

HOME NURSING UPDATE

Many of you have emailed me asking the latest on the nursing situation...I still don't have any final answers unfortunately. The hours have been cut back some and possibly completely as of next week. They are currently reviewing our situation.

Last night I didn't have a nurse and while I didn't get much sleep, it was fun to sleep in the same room with him and listen to him breathe. (And when he would wake up he would play with this toy that sounds like a bell...so it sounds like he is "ringing" for me to come play too!)

And it's amazing what you can get done at 4 in the morning! But really, I did manage to get some sleep since he is so much more stable right now. Not sure how it would be if he was sick because then his O2 sats are all over the place and he needs suctioning frequently. The one odd thing right now is that he has bradycardic episodes more frequently than before...last night the monitor never stopped beeping.

We'll see. As much as home nursing is soooo incredibly helpful and it will be difficult without it, I do look forward to having our home once again be just "our" home and be on "our" schedule. I know we will find a way to manage...there may just be a rough transition. I (with hopefully some help from the other parent) will have to hire someone with nursing training who can help with Maxwell so I can run errands, sleep occasionally, etc. -- all things you cannot do with a "medically fragile" kiddo. I am confident it will all work out...what is most important right now is how great Maxwell is doing!!! :)

"NOSE HOSE" BACK AGAIN

Well it was fun while it lasted.

Talked with the pulmonary team today and they said Max should remain on oxygen despite good saturations. They reviewed his last echo and it showed several problems and those will worsen without supplemental oxygen. I put another call into cardiology to confirm that they agree. I am HOPING he wants a repeat echo and this will show much improvement since January. However, pulmonary said not to get my hopes up because it usually takes six months or so to show that much of an improvement and therefore it will be months and months before the 02 "nose hose" will be removed. Darn it, darn it, darn it. And one more time....DARN IT!!!

HE'S DOING WHAT???

Max and I have been working VERY diligently on his head control and neck strength. This has not been one of his favorite activites (by far) but soooo necessary. Children with CHARGE can have significantly low muscle tone, especially in their upper body...therefore neck, head and torso strength are quite weak and require a lot of work.

Fortunately, these past few weeks he finally decided tummy time wasn't complete torture and would accept short periods of time. And he has attempted to lift his head briefly (for just about two seconds) and only a few times and then he would be upset and exhausted. THEN this weekend he decided "heck with it"...let's do this already! When placed in just the right position and with LOTS of encouragement, he lifts his head much higher and for a much longer period of time!!!! And then if that isn't great enough, he uses that as a launch to roll over!!!

YES, you read correctly. HE ROLLED OVER!!! Yay Maxwell!!! Lifting your head and rolling over...TWO BIG MILESTONES ALL IN ONE DAY! WOW!!! :) He has made such tremendous progress this past week...and I am absolutely thrilled! :) Can you tell???

WHAT'S MISSING?

What's missing on this adorable lil' boy???

(If you can't guess, scroll down below for answer!)

His oxygen silly! Can you believe it??? It was a temporary trial on Friday and he PASSED!!! He went five hours without being on oxygen...it was absolutely incredible!!! I had not seen his sweet face tube free for that long of a time...EVER! So of course I snapped many, many photos and smothered his "tube free" cheeks with lots of kisses! :)

I think it goes without saying that this is a HUGE step for Mighty Maxwell. HUGE!!! :) We are trying to slowly wean him off oxygen and see how he does. But we also have to be concerned with his pulmonary hypertension, which requires some oxygen despite good saturations. I am putting calls into cardiology and pulmonary today to get their latest thoughts on how I should proceed. Right now he is on just a tad of O2 (the least amount that he has been on post heart surgery) and doing great...hopefully this afternoon we will do another successful tube free trial!!! GO MAX GO! :)