ROBOT FAMILY?

I'm not sure if I can adequately describe how bizarre this moment was, but I'll try.

So I was all wired up with my halter monitor and sleeping in the room with Maxwell. (Our night nurse took a holiday vacation, which she definitely deserves!) Mr. Max was having a very difficult time sleeping (which has been the case all week due to various health issues) and I tried rocking him, playing with him...anything to ease his discomfort and make him happy.

He was definitely tired but his stomach was giving him a lot of problems. Finally we laid down together in my bed (next to his crib) hoping that this would help him relax. That sounds easy to most parents, but when your baby is hooked up to three different machines, it can be a little cumbersome.

Then add in my ten wires and monitor. We must have been quite the sight. Then Max spots my wires and starts pulling at them. Trying to keep a kiddo away from his AND your wires is quite interesting! The most comical part was that finally we managed to take a brief "nap" at 3 in the morning, and I wake up to our wires being all tangled together. Robot Mommy and Robot Baby!

Fortunately Max had a slightly easier night yesterday AND I was able to finally remove my halter monitor (48 hours). When I was ripping the tape off (yikes!!!), I gained an entire new appreciation for Maxwell!

TWO NEW BABIES!

My friend, Wade and Brandy, welcomed Avery into the world this past week. Congratulations to all three of you...and Riley the dog too of course!

And today we welcomed the very first GIRL baby into the McKinley family. The proud parents are my brother David and his wife Meredith. No name yet...perhaps Maxwella? :)

We are so happy that both deliveries went smoothly and the babies are very healthy. Congratulations everyone!

HAPPY THANKSGIVING

Thanksgiving was lots of fun! We went to a friend's house for dinner and everyone was so impressed with all my progress.

I crawled (commando style) around for everyone and then I even did a few crawls on my hands and knees with my head up! WOW! I got a lot of praise for that!

Last year I was in the hospital recovering from heart surgery. Mom, Grammy, Uncle Jim, Aunt Eliz, and my cousins had turkey dinner at the Ronald McDonald house. They had to eat in their room because some of them were sick and they couldn't risk getting any of the other families sick. It was an interesting holiday last year, that's for sure.

We have decided for now on, we will celebrate holidays OUT of the hospital. It's much better being at home with friends and family.

Mommy and I are very thankful this year for the wonderful new friends we have made locally and across the country. Your love and support have helped us tremendously through some very difficult times.

We are also incredibly thankful for the amazing progress I have made in recent months and for the dedication of my fantastic therapy, nursing and medical team. With everyone's help, I am becoming the amazing, adorable, wonderful, cute, funny, happy and determined lil' man that I was destined to be!

And who knows, maybe next year I can even try some turkey. Now wouldn't that be exciting!?!

MEETING SANTA!

I finally got to meet Santa...wow! He posed for photos with all of us special kiddos at the Festival of Trees. We were so excited! :)

He's quite a different looking guy, I couldn't keep my eyes off of him! He and Mommy kept trying to get me to turn around for the photo, but nope...I just wanted to check out this bearded fellow in the funny red suit!

Wonder if this guy would appreciate the famous "Max Attack?" That beard could be lots of fun to pull! :)







Oh hi Mom, have you met my new friend Santa?


















Now back to checking out this guy...


















Ok now I'm done.


















My super wonderful cousin, Jackson, came with us to the Festival of Trees. Isn't he soooo handsome? I just love my cousins.

FESTIVAL OF TREES

Tuesday was the annual Children's Hospital "Festival of Trees" celebration at the fancy Fairmont Olympic Hotel in Seattle. Wow, what a night! They had 25 uniquely decorated, absolutely gorgeous Christmas trees, and each one honors a courageous patient of the hospital. Several months ago we learned that I would be honored, and of course Mommy and I were thrilled. It was so exciting to see it all when we arrived. :)

We met many other wonderful families and learned about their challenging journeys. So many sad, yet incredibly inspiring stories...it was quite emotional. Many people stopped to ask Mommy about my story. She always is proud to report how much progress I have made!

These trees are part of an annual fundraiser for the hospital - each tree is expected to sell for $10,000. (My friend Dylan's tree sold first...way to go Dylan!) For more information on the fundraiser and to see the incredible trees, visit http://seasonoflight.seattlechildrens.org/festival_of_trees.asp.

Check out #19 (my tree). It's named "Alabaster Angels -- Iridescent white and silver ornaments and elegant white angels decorate this glitzy tree."

Mommy and I waving hello to my fan club. That's my tree behind me! Isn't it beautiful? :)








Here's an even better view of my tree.

Oh and notice my wave? That is definitely my favorite trick these days! :)














Each tree had a photo and story of the special child being honored.










Might not be in the mood to smile, but I am still darn cute.

Mommy's absolute favorite tree! :)

Titled "Man's Best Friend," it was covered with adorable doggy items. She loved, loved, loved it!

Me and Mommy in front of the "Grand Tree"













And last but not least, I finally got to meet the famous Mr. Phil Smart. Mommy has told me all about him and she was excited to introduce us to one another.

Phil Smart is an incredibly important and special man at the hospital. For decades, he has been a regular volunteer (first male volunteer there ever!) and fundraising advocate for us special kiddos and our "Miracle House." His book and video have truly inspired Mommy and got her through a very difficult time in the hospital.

We are checking each other out and deciding who the more amazing man is...him or me? hee hee!

PRAYERS NEEDED

Two precious CHARGE kiddos are having lots of problems right now and they definitely need our prayers.

JD, a little boy in Texas (same age as Max), almost passed away today due to respiratory complications. Fortunately his parents were quick to react and got him helicoptered to the local hospital immediately. And another little girl, Meagan, has been recovering from her cochlear implant surgery and got very sick and extremely dehydrated. Now she is back in the hospital.

This CHARGE disorder can be so frustrating at times...it impacts our children in so many ways and makes them vulnerable to so many illnesses. I am extremely emotional tonight about all of this, and it just breaks my heart how many families and children are suffering.

Earlier this week there was intense discussion among a few of the adult CHARGErs (on our group list) and how difficult their daily lives are...medically, developmentally, socially and emotionally. It saddens me to know that there will always be new challenges for Maxwell...once we surpass one, we have another ten more waiting for us. Even though I know this from researching CHARGE and the long term challenges, personal stories hit so much closer and make it all more real to me.

I best get to bed or I will get even more emotional about all of this. JD and Meagan's stories both really hit me hard and were frightening to read.

Please send your prayers of love and comfort to these two families and everyone in our wonderful CHARGE community. They are amazing people. Thank you.

ONE YEAR SINCE HEART SURGERY

Tomorrow (11/21) is a special day...one year since Maxwell's open heart surgery to repair his Tetralogy of Fallot (serious heart defect including ASD and VSD).

This surgery saved his life and transformed Maxwell into a MUCH stronger, healthier baby. Before the surgery, Max's body was really struggling with nearly every issue...from breathing in the 100s ALL the time to heartrates in the 200s. He was expected to require a trachestomy and was dealing with serious neurological "twits." Afterwards, he was an entirely different lil' man. It was incredible, absolutely incredible.

I remember feeling such a sense of peace going into that surgery. I just knew it was going to be successful. Perhaps I was calm because he had already endured so many surgeries or perhaps I was in denial. But I truly think my mommy instinct told me everything would be ok. His cardiac team was so impressed with him...they said they wished all their cardiac kiddos recovered as well as he did! :)

Here's a link to that post...pretty amazing change, isn't it???
http://maxupdate.blogspot.com/2005_11_20_maxupdate_archive.html