BUSY WITH APPOINTMENTS, RESEARCH

Sorry we haven't posted for a few days, it's been busy! We have been running around to various appointments, researching financial support and CHARGE information, and dealing with a few different medical issues of Maxwell's. Additionally, there have been several nights this week without a nurse, but we have done pretty well. I sleep beside his crib and I must sleep pretty lightly now because the beeps easily wake me up and alert me to any problems. Last night he had a pretty good desat (73) and I jumped up and was pretty scared for a moment, but luckily he resolved it without any intervention. Crazy Max, always keeping me on my toes!!! :)

Today we had a trip down to Children's to meet with Max's audiologist. Yay, he currently does not appear to have fluid in his ears...this is great news. We are hoping it stays this way and he does not require tubes (which can hinder the ability to wear hearing aides due to his "craniofacial differences"). We got him fitted for new ear molds...he is growing out of them so quickly and once they are even a little loose, you get feedback and the aides don't work very well. Additionally we got them programmed a little stronger and we are HOPING that helps Maxwell. We are planning for another hearing test in June...perhaps a sedated BAER or if he is developmentally doing well, we may try a response oriented test. I hope he can do the latter! Ran into several of his doctors and nurses and of course they were blown away with how great Mr. Max is looking! Always fun to show him off! :)

We had our various therapy appointments this week and everyone is very impressed with his recent progress. So exciting to brag about his new "tricks"...lifting head, rolling from side to side, verbalizing more, touching toes. Unfortunately, he is not wanting to lift his head as much like he did earlier this week. He seems to be quite particular about when he wants to do his therapy and when he doesn't. But progress is progress so I am not going to complain.

Then yesterday afternoon we had our car seat checked at the police station. They were incredibly helpful and gave me extra tips to adjust the car seat now and in the future to help ensure his safety with his low muscle tone. Such a great service they provide...I recommend every one does it. Even if you think the seat is in properly, I guarantee they can tweak it to make it even better! I had it near perfect but now I feel much better having it checked by them. Thank you Bellingham Police Department!

Max is zonked right now from his long day on the road, but soon he will wake up and we will get going on our favorite activity - BATHTIME!!! So I must run...and get everything ready for him.

P.S. My biopsy came back negative - yay! :)

MORE IN LOVE THAN EVER!

I seriously am not sure if I could love this boy anymore than I do right now...he is so incredibly amazing. Every day I fall more and more in love. I know I say that all the time, but the feelings are so overwhelming. I am stunned with his amazing progress and it gives me such great hope for his future. I know we have many, many challenges ahead but I feel certain Max was brought to this earth and to me for a very specific reason. He has much to accomplish, but already he has taught us all the power of love, determination and faith. Max, you are truly a miracle. Thank you for all that you are and all that you will become.

MORE PHOTOS OF DELICIOUS MAX!

Watch out everyone, these are some of my cutest pictures yet! Trust me, they are absolutely adorable, if I do say so myself! I am getting bigger, stronger and more handsome each and every day. Once you see these photos, I think you will agree! ENJOY! :)

I am going to get these flying bugs if it takes me all day!!!

(I had these same toys for him in the hospital but he didn't show much interest then. I found them this weekend and brought them out, and WOW what a difference! He is obsessed with them now and finds great joy trying to "get them." Love seeing this amazing progress!)

Mommy, for real. A doggie hat?
(This has to be one of my all time favorite photos of sweet Max! Could he be ANY cuter???)

Yummmmmmy...Mommy's glasses are delicious!
(Max LOVES to take my glasses off and play with them!)

Mommy, look I have a foot!

(That day was Max's VERY first time to touch his foot...so exciting! Another milestone!)

Just chillin' in the beautiful weather! Mom was busy trying to get our yard ready for spring. We must have been a sight...Mom brought out my O2 tank, milk machine, right there in the front yard. She is getting very good with making me "portable." She thinks the fresh air is good for me...I agree! :)

(Very hard to weed when your son is looking this precious!)

"THE MAX ATTACK"

I am attempting to wade my way through a pile of medical bills today (what fun!) and so I encouraged Max to take a nap so I can stay focused. However, he has other plans (why don't babies understand schedules???), but fortunately he is busy entertaining himself in his crib right now. As long as I come and play with him every five minutes or so, he seems pretty satisfied.

So I just went in to say hi and give him a quick kiss and sure enough he returned the gesture with a "Max Attack," which is absolutely hilarious. He grabs my hair on both sides of my face (and his grip is QUITE strong these days!) and pulls me closer and then takes my nose into his mouth and bites and sucks it. Sounds funny I know...and trust me, it is! But it is soooo adorable! All the while he makes this funny sound "aaahhhaaahhh" because he is so excited! :)

Ok, back to dealing with the insurance company...YAY!

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! :)