MAJOR, MAJOR MILESTONES!!!

I have GREAT news about some major milestones that Max has reached this weekend!!! It's funny, I was just telling one of his therapists yesterday that it seems like Max has taken some "super drugs" these past few weeks because he has really shown tremendous development recently. It is FANTASTIC! And then today he took that up even a few more notches...way to go Mighty Max! :)

Keeping you in suspense, I know! But I promise to write more tomorrow and include photos to illustrate these amazing Mighty Max milestone moments!

FUNDRAISER A BIG SUCCESS!

Thank you everyone who helped make the kickoff event for The Mighty Maxwell Guild for Children's Hospital such a huge success!!! :) Nearly 100 women (including a few of Max's nurses AND some moms of other former patients) were in attendance...and we definitely came close (or quite possibly surpassed) our $10,000 goal. As soon as possible, I will post the final tally. And also very important, everyone had a super great time! YAY! :)

Thank you, thank you, thank you to everyone who contributed their money, time, talents and donations. You have helped make a difference in the life of a child! THANK YOU! :)

* I promise to post photos asap too! It was sooooo cool to see nearly 100 women all sporting their "I "heart" Mighty Max" shirts! Below are a few quick "pre event" pics:

Here are some of the "dots" we sold at Treasury of Memories. From the very beginning, the customers have been sooo supportive of Maxwell!

Local businesses really pitched in and helped advertise the event and donated great auction items.

FUN DAY WITH MIGHTY MAX

You know the days when you just look at your child and are just completely overwhelmed with your love and adoration? THIS IS ONE OF THOSE DAYS!!! To be honest, I find myself overwhelmed with my love for him quite often (yes, he has me "hook, line and sinker"!!!)...but these past few days he has been even more adorable and interactive than usual. He amazes me each and every day with what a true miracle he is! :)

He was super cute today...I had a doctor's appointment and so for the first time we went to an appointment and I was the patient. He seemed to enjoy it much better this way! He was soooo well behaved the whole time...just sucking on his thumb and looking around and of course getting lots of attention from everyone! I had to get a biopsy taken and sent away...results will be back next week. I'm not overly worried, but anytime I think of my health I immediately think how it impacts Maxwell. You know? It's amazing that ever since his arrival, all I think about it is his health, happiness and well being! Anyway, it was an interesting adventure out and about today!

Here are some adorable photos from today. I know, I know, I am obsessed with taking his picture! :) (Yesterday the clinic photographer at Children's had to take a bunch of photos for Max's medical records and Max kept turning to the camera and he was teasing me that it is obvious Max feels very comfortable in front of the camera!!!) It seems like I spend all my money these days on diapers, gas for doctor's visits and photo developing! But with all that he has been through and how super cute he is, how can you not want to capture each and every moment???

ENJOY!!!! :)


























Here is Max attempting to sit in his boppy chair...a lot of work but sooo good for his torso and neck strength! GO MAX GO!

Today Max wore "big boy" clothes for the first time! I usually keep him in knits and outfits that allow easy access to his Gtube. But today I decided to try a pair of overalls on him...and could he be ANY cuter???

Kissing Max's neck and making him giggle is my absolute favorite thing to do these days! I love his smile!!! We were in the middle of a "photo session" when I stopped to give him kisses and thought I would try and snap one of us! :)

TRIP TO CHILDREN'S

Today Max had appointments with the Craniofacial team at Children's. They had not seen Max since his discharge and were very excited with how great he looks!

This was the initial team that followed Max upon his first graduation from the NICU when he was two months old. That was a very scary time for us. While we were excited that he was doing better, he was right on the borderline on where he should be (ICU versus the floor)...and then came the issue of the trach. Max was having severe "failure to thrive" and the conditions of "congestive heart failure" and "chronic lung disease" were daily discussions. Yuck. Always hated those terms but that was our reality for the mighty lil' man.

Additionally this was the period of time when Max was having his major "twit spells" when he would cry for hours upon hours upon hours...and literally NOTHING would calm him down. Each time he nearly ended up in the ICU because his weak fragile body couldn't handle that stress...his heart and respiratory rate would skyrocket and everyone would be completely freaked. Just writing this brings back some very painful memories...it was so horribly sad to watch him in so much discomfort. (Later these episodes were diagnosed as "twit spells," which are common with babies with major pulmonary issues and Ativan became Max's new best friend.)

Anyway that team helped us through many, many difficult days/weeks/months...whether they were treating Maxwell with extra TLC or taking the time to discuss the big and small issues in detail with his very worried mommy (who was dealing with absolutely no sleep but still trying to make major decisions). And when I was angry/upset occasionally on some difficult and confusing matters, they were always quick to respond. (I think I often won the record for the most questions asked during morning rounds! Oh well!)

We were at clinic to check up on some of his craniofacial issues...primarily his facial palsy, recessed jaw and choanal atresia. I am particularly worried about the jaw and wanted to know how soon we would know if he will require surgery. The answer for now is "wait and see." So that's that for now.

The clinics were apparently very backed up today so we had quite a long wait...but as you can see from the photos, Max and I like to have fun no matter where we are! And of course we had to fit in some tummy time for his therapy...he was not happy with that activity choice! But Max did really enjoy reaching for the doctor's instruments. Every time I would look away he seemed to sense that and would grab and chew on them. I was trying to discourage this but he was very determined!

*On a side note, I have been getting up and down every two seconds while I write this post because Max's monitor is beeping like crazy. He is having constant bradycardia tonight...I think it is because he is so exhausted from his big adventure today! Fortunately his heart rate has self resolved thus far with no intervention.*

So no big news from our appointments today. Hopefully his labs come back ok...it's been a few weeks since the last draw and we want to ensure everything is stable despite his medication changes and recent illness.

It was fun to run into several more doctors and nurses today and learn that they too are reading the blog. (Not sure how they even heard about it!) But how nice is that? Even after his discharge, they are still concerned about sweet lil' Maxwell. Many of them review his updated computer records too just to keep track of his progress. I love how much they all adore him!

I am tempted to go wake up Max because of this heart issue, but he is so peaceful right now. Well looks like I will stay right by his side until the nurse gets here!

MAX & TWO OF HIS FAVORITE BUDDIES

Max really enjoyed his weekend with "Uncle" Drew and "Aunt" Stephanie. It was a mutual love fest! :) And I was sooo proud to show off how great he is doing! He started feeling better just in time for their visit too...which was wonderful.

Steph and Drew's family has been hit hard recently with many serious health issues, so we spent a lot of time talking about special needs, our worries and concerns, the future, life, etc. Lots and lots to discuss! And they are good about wanting to learn more about Max's issues...I know it's uncomfortable for some but I love when people do ask questions and try to understand his challenges. We can all learn so much from each other.

Thanks Drew and Steph for your visit! You are incredible and we just wished you lived closer!!! Come back soon! :)

Drew was doing a funny whistle and Maxwell responded eagerly with his sweet lil' giggle...we aren't sure if it was because he could hear the sound or if he just thought Drew looked funny making the sound!!! Either way, it was an adorable moment!

And of course Shakespeare had to join in on the action. Doesn't Max look kind of annoyed that he is having to share Drew?

Steph and Drew were great about helping out too! Drew helped me hold Maxwell down for suctioning several times...not a fun job but it was soooo great to have an "assistant". Max may be small but he is quite mighty when it comes to defending his nose. And here in the photo is Steph when she was able to calm Maxwell down and put him to sleep. She was sooo happy with herself, and I was too! :)

Drew was a big hit for both of the little ones! We took everyone on a picnic and kite flying adventure...lots of fun!

How cute is my lil' angel all bundled up for our adventure? I think he really enjoys his trips outdoors...excitement but no germy crowds! He had to catch a few ZZZs to keep up with everyone.

MAX'S FAN CLUB CONTINUES TO GROW...AND GROW...AND GROW!!!

So last week I was wondering how many people really do read Max's blog, because it seems like every day I find about yet another person who has been following our journey. I either receive emails from complete strangers or a friend tells me that "Oh of course my niece, my mailman, my hairdresser all know about Max. They have been reading his blog for months now..."

I added a simple monitor to the site and it gives you a summary of the number of visits, the city and states of the visitors, etc. Boy was I surprised to see not only how many states were listed, but also how many countries! The majority of the visitors are from Washington and West Virginia but nearly every state is represented too! Every day there are over 300 people visiting his site! Some days many, many more!

What is funny too is "how" people are learning about Mighty Max. Many other sites now post links to this blog and then there have been numerous tv interviews, newspaper articles and the latest...our fun radio interview this past week. Others say they have heard about him through a friend and have been hooked to this lil' miracle's story from that point on!

THANK YOU everyone! I love how many people are caring for, concerned about and celebrating Maxwell!!! :) I love your prayers and your supportive emails and letters...it has provided incredible strength and comfort during our challenging journey. I can't wait to tell Maxwell someday how many people were routing him on...I have a feeling though that his fan club will be quadrupled by that time!!! :)