DYLAN TEACHES "VANITY" THERAPY TO MAX!

WOW! WOW! WOW!

Yes, that is Mighty Max SITTING next to his friend Dylan! So exciting!

This is the very first time that Max has sat completely unassisted and without something to lean on.

Ok he is leaning on his legs...but still, this is so huge!! Kristy and I were thrilled! I was very happy to share this special moment....especially with a mommy who understands just how wonderful this is!

It only lasted for about a minute and then he started whimpering for his mommy. He gets really tired working so hard. But how cool is this progress!?!? WOW! WOW! WOW!

I am definitely going to buy a mirror tomorrow so we can try the same thing at home. It also encouraged him in the prone position to really look around. YAY! Thanks Dylan for teaching Maxwell your "vanity therapy!" hee hee! It worked! These two beautiful boys LOVE looking at themselves!

During our visit, we also got to meet baby Jonah. He is absolutely precious. And as strange as this may sound, it's amazing to see a newborn with no tubes and surgery wounds!

Another bonus of the visit with the Gillig family was that Max's O2 sats increased and stabilized. So we were able to take Maxwell off of his oxygen and have less tubes and wires getting in the way of playtime! YAY! (Max's O2 needs have gone up significantly during the night and now he is needing some during the day again too.)

So while baby Jonah slept, the two big boys had the opportunity to show off all their new tricks. So fun! They aren't quite at the stage yet to interact and play together, but they did stare a lot at each other. And Dylan did attempt to take fistfuls of Max's beautiful hair, but he made up for it with a very sweet kiss. :)

We brought along a toy to show Kristy how great Maxwell is doing sitting with support. (Little did I know Max was going to try sitting without the toy!) I love watching him play so independently with this toy...amazing!

He just started this a few days ago and I couldn't believe it. The first time he fell over he cried, but his therapist said he needed to learn some "cause and effect" so that he would react more quickly to the sensation of falling. Not sure if that has quite happened because now he actually thinks falling is a little fun. (That's probably my fault...I tickle him when he falls to keep him happy!)

After all that playing, Maxwell was completely worn out and fell asleep within minutes of leaving Dylan's house. He didn't even wake up when I took him into the house and put him to bed.

Thanks again for the fun visit Dylan, Kristy and Jonah! We love you guys!

THE CYCLE OF LIFE

I have never been so keenly aware of the precious cycle of life until Maxwell was born.

The number of early deaths among children that we have witnessed this past year is simply overwhelming. So many beautiful babies (and grown lil' boys like Timmy - I didn't forget you sweetheart!) only with us for a short period of time.

And then there are the children fighting the fight each and every day and attempting to beat the odds. Mighty Max still stumps me how he is alive (and trying to THRIVE) despite his medical "quirks." Man this kid has spunk!

I have an entire new appreciation for life and death and hopefully those around me have been changed by Maxwell and his special friends too.

Soooooooo (drum roll please!)...the wonderful news is that we have a new addition in this beautiful cycle of life!

Welcome AVA JANE HAYES!

She is a sweet lil' girl born to her wonderful parents, Bob & Tricia Hayes. Remember the courageous baby boy, Carter? He was one of the "three amigos" with Maxwell at Children's Hospital? He fought the good fight for many, many months but finally the Lord said "Hey kiddo, come on home. We miss you up here."

His parents were devastated of course...they absolutely adored this lil' man. A few months before Carter passed, Tricia and Bob found out they were pregnant. It was so exciting. They were building a family! It brought comfort to all of us knowing that if Carter did pass, there would be a lil' baby brother or sister to bring love to mommy and daddy. However, it was also terribly sad knowing that if Carter did pass, the two siblings would never know one another.

Baby Ava is now nine days old and doing great. Her mom has been extremely emotional of course...reliving all those terrifying moments with Carter. She said she didn't even sleep the first 3 or 4 days in fear that she would wake up and Ava would be gone too.

It is so wonderful seeing Bob and Tricia move forward with their life. Of course, Carter will never ever be forgotten, but to see the cycle of life continue is encouraging for everyone. And they certainly deserve this happiness and "normalcy" of life. They are wonderful people!

We became fast friends with them (and Lane's family - we miss you guys!) at Children's. You develop a special bond when you have endured such similiar and unique experiences...how many people can truly understand what it is like to LIVE in a hospital with your very sick child for months on end?

We have kept in touch and they are always so supportive of me and Max. Yesterday Tricia said quite honestly (with no disrespect - she adores Max!), "Amy, I think you have it hardest of all of us. We may have lost our child, but your journey in many ways has only begun. You two have a lifetime of serious challenges and hurdles."

I appreciated that she recognized the difficulty in our situation. The struggles don't simply vanish just because the child lives. Sometimes for some children, death is the better option for whatever reason. Other children are chosen to live but must endure a much different life with handicaps, hurdles, etc. I am extremely grateful that Maxwell was chosen to live, but I am well aware it will not be easy. But I also know in my heart and soul that this lil' guy is here for a reason (think of all the people he has already touched!) and he still has A LOT to accomplish in this world.

And actually one such thing is a fun, messy bath this morning with his mommy...so I better run. (I just heard him stirring and babbling in bed. He had an episode with a tomato last night so he definitely needs a good shampooing!)

CONGRATULATIONS TRICIA AND BOB...and WELCOME AVA! WE LOVE YOU! :)

Please pray for peace, health, joy and comfort for the Hayes family as they welcome this new precious addition to our cycle of life. Thank you everyone!

*About half my friends are expecting babies in the next few months...so the cycle of life is definitely moving forward quickly!

LOOK AT ME IN THE CART!!! YAY!!!

Yep, that's me! I'm sitting in a shopping cart, how cool is that??? (And seriously, could I be ANY more adorable? Look at that sweet grin of mine!)

I know for most parents this cart ride would not be a huge deal, but it certainly is for us! We are very, very, very excited! Such a big boy thing to do!

We were supposed to have a nurse this morning, but she didn't show up. No worries...I am feeling pretty good today. So Mom and I decided to make a quick trip to the grocery store. On the way in, she asked me if I wanted to try actually sitting in the cart. I said (with my eyes) "sure, let's give it a try!" So Mom quickly sanitized it all down and then I got in...and I did just great! WOW!

Ok, I'll be honest...I did have a little help. I used the bar the entire time for support and for a head rest. But I also looked around lots and enjoyed the view! And of course Mom kept her hand on me pretty much the whole time just to make sure I was ok. But overall, it was ALL me...MIGHTY MAX!!! I'm certainly living up to my name, don't you think? :)

We had pretty much the entire store rejoicing with us! I was looking around and smiling and Mom could not stop smiling either! She was sooooo proud of me! :) She thinks I am truly amazing!

And of course when Mom explained to others why we were so excited, they would be so happy and ask all about me. Mom didn't mind telling our story today because she was so thrilled to brag about me and my latest accomplishment!

Then on top of all this excitement, Mom got a free Starbucks...her favorite! :)

When we went to our car, the fun continued. Usually Mom doesn't go anywhere without her camera because you never know when I am going to do something fantastic. But she didn't have it with us today, but our cell phone was quite handy. We had a little photo shoot with the phone in the parking lot. And of course I got even more attention with that. I am developing quite the fan club in Bellingham!

What a super adventure today! You just never know when I am going to reach another milestone...so exciting! YAY FOR ME! YAY FOR ME! YAY FOR ME! (Can you tell how excited Mom and I are about this?!?!)

NICU DOCUMENTARY

Through a CHARGE friend, I just learned of the documentary "little man." Has anyone seen this yet? Apparently it was running on Showtime for a while and it has earned numerous awards. It is about a little boy born 100 days early and weighing only one pound. I just bought the DVD and I am questioning "am I crazy?" Why in the world would I want to relive Max's six months in the hospital? I know it will bring back a lot of very painful memories, but perhaps it will be good therapy too. For the most part, I have tucked away those dreaded days and have never really dealt with their full impact.

I'll let you know. But for those of you who want to learn more, here's the website:
http://www.littlemanthemovie.com/home.html

*Yes I know. Why in the world am I buying DVDs at nearly 3 in the morning? Max's Gtube came apart and he and his bed were completely drenched. So I just got him back to sleep and now I need to do the same. Night!

MEET THE AMAZING KENNEDY!

There is a beautiful girl named Kennedy and I would love for you to meet her! Her new website is: http://www.chargesyndrome.info/. She is AMAZING!

Kennedy and Mighty Max have experienced similiar medical complications, i.e. choanal atresia, open heart surgery, hearing loss, inability to eat orally, etc. (Unfortunately Max has the preemie issues /chronic lung disease too! Lucky Max.)

Her list of specialists include:

• teacher for the blind/visually impaired
• teacher for the deaf/hard of hearing
• early interventionist
• speech pathologist
• audiologist
• pediatrician
• gastroenterologist
• endocrinologist
• cardiologist
• nutritionist
• neurologist
• orthoptist
• ophthalmologist
• orthopedic surgeon
• cleft-palate team
• otolaryngologist
• physical therapist
• occupational therapist

In Kennedy's 8 1/2 years of life, she has already experienced 18 surgeries. What a trooper! But despite that and all the sensory/behavior/developmental delay issues typical with CHARGE, this lil' powerhouse is in the Brownies and has attended regular school with support for the past three years. Plus look how adorable and spirited she is in her videos!!!

She does continue to have ongoing medical needs around her secretions, heart, tube feeding, etc, but she has come a long way developmentally. She is considered (and admired as) a "high functioning" CHARGEr. (Many are non-verbal and severely delayed.) Obviously I am HOPING that Max is another "Kennedy" in seven years participating in activities and attending public school....but only time will tell. We are certainly doing all we can to hopefully reach the same goals! :)

Kennedy is a true inspiration to me and soooo many other families with young CHARGE children. Her mom dedicated all of her time to Kennedy's therapy and it is certainly paying off!

Her mom, Lisa, also heads up the CHARGE online international support group. This group has been a true lifesaver for sooooooooooooo many of us parents. I seriously don't know what I would do without the advice, support, love and humor of my fellow CHARGE moms and dads.

Thank you Kennedy, Lisa and family for the amazing support and inspiration you give to the CHARGE community. We love you!

MAX'S CRAZY ANTICS

Max had a little bit of a rough night again...several vomiting episodes. It's so strange that according to his tests, his Nissen (surgery to wrap the stomach around the esophagus) is still in place. It's supposed to prevent reflux (and therefore protect his lungs from aspiration) and allow some vomiting only if absolutely necessary. But apparently Max didn't hear the rules and manages to bypass his Nissen quite well. He is quite the spirited lil' boy!

This photo was after I cleaned up Max after one of his "episodes" and his hair quickly resembled Elvis. Not sure the photo really captures his crazy hairdo though! (Think about the funny date scene in "There's Something About Mary.")

His O2 needs were up again last night, but overall he seems to be feeling better. We are keeping up with his numerous inhalers which provide some relief to his tight lungs.

However, the other day I was thinking all was going great with Max. He was taking a nap and was having a few desats on room air but nothing requiring intervention. Then during an alarm silence, I was just watching him and admiring how adorable he is sleeping. Within a minute or so, I noticed that he didn't look all that good. And I thought about how many different "looks" Maxwell has. Sometimes he looks so healthy and "typical" and then other times he looks like he should still be in the ICU for a long term stay! Then I realize nope, he doesn't just not look right, he doesn't appear to be breathing. He quickly was turning the infamous pale, grayish blue and his sats were dropping significantly. It was crazy.

I picked him up and gave him a good shake and within minutes, his color was back to normal. Just another fun afternoon in the McKinley household!!!

We'll see what adventures are ahead of us today!