Saturday, October 21, 2006


Check out my big ol' snot!!! Yucky for you maybe, but very exciting for us! See my nose never, ever runs. Some kiddos with repaired choanal atresia (born with closed nasal passages) have constant runny noses and others (like me) have the opposite problem...all of the snot runs backward. This can cause a lot of coughing, congestion, vomiting, etc. And Mom and my nurses have to suction my nose all the time since the passageways are so narrow.

But for some odd reason today, my nose started running...and running...and running. Mommy was thrilled to get to wipe my snot over and over again! It was quite funny! :)


Here are some recent photos of two of my best buddies...Barney and Shakespeare. They are super cute and Mommy just adores them both! She is excited for me to play with them when I get big and strong.

For the most part, Barney doesn't pay too much attention to me right now. He is too busy chasing squirrels outside.

But Shakespeare is another story! :) He loves to be with me and Mommy all the time...always kissing us and trying to steal Mommy's attention away from me. And of course, he LOVES when I have visitors so he can get love from them too! He is one silly dog!

If only I could train him to hide my hearing aid for me! (Oh yea, Mommy found my hearing aid...yay for her, nay for me. She was super excited, but I am determined to not wear it and adamantly pull it out every few minutes.)

Mom was trying to feed me but Barney decided he wanted a little Mommy lovin' too! :)

And here is that silly "always by my side, always kissing me" dog Shakespeare!

Wednesday, October 18, 2006


This time of year brings back many emotional memories from 2005. October and November were two very difficult put it mildly.

Maxwell endured his Gtube and Nissen surgery and experienced multiple complications afterwards. Then once he stabilized and returned to the general floor, he started to crash and was intubated for the next two long months.

I remember clearly some moments when we were just not sure he was going to make it in the long run. (I never wanted to admit that at the time, but looking back I was probably in a little denial...ok a lot. Or perhaps it was just good ol' Mommy intuition?) I also was constantly worried about his quality of life...would he ever smile, would he ever play, would he ever know who I am? I didn't want to keep him alive just to have him alive. And at times, it was feeling that way.

Now it is so incredibly strange to think of Maxwell not being here with us. I simply cannot imagine a life without my beautiful, amazing little man.

And he certainly has far surpassed everyone's expectations on his development!!! I know that we are still very behind, but man oh man is he trying hard every day to reach his goals! His determination is remarkable! And smiles, playing, and loving? It's now an every day thing!

For a snapshot of what life was like for Maxwell a year ago, here is a link:


It's a standard snapshot...a child in beautiful colorful leaves. Every parent does it. And the photos are always so cute. :)

Well did you realize it can also be a good therapy experience for kiddos with sensory issues?

Maxwell's OT and I have really been working with him on his high sensitivity to various textures. You take it for granted that a child will touch whatever, whenever...but when the brain is sending different messages, new textures can be quite overwhelming! It's quite fascinating to watch how particular Max is and how adamant he is about what he likes and does NOT like.

To help with this, we tried sitting in leaves (that was ok) and rocks (absolutely NOT ok) today. I also bought more toys and items with random textures. We have tried a few and the response was mixed! But we'll keep trying.

In the meantime, here are some super cute photos. Note that Mr. Max never actually touches a leaf...he accepted me sitting him there and throwing leaves but would not touch. :)

What's this all about Mommy?

Oh cool! I like when they float through the air. Keep doing that Mom. Just please don't let them touch me!

Ok, are we done? Look at how cute I am? We're done right?

P.S. To all the Mountaineers in Max's fan club, how CUTE is Max in his WVU sweatshirt??? Thanks Uncle Dan and Aunt Carolyn! :)

Monday, October 16, 2006


Today at playgroup, Max decided to alter his crawling style a bit. He wasn't as high on his hands and knees BUT he lifted his head and moved forward all together! Very exciting!

He did it right during song time, so of course I interrupted everyone and said "Look at Max, look at Max!" Everyone gave him a well deserved round of applause...YAY MAX!

Another little boy suddenly became mobile this week (learning to walk and crawl all in just a few days!!!) so everyone was very excited for this amazing progress for our special kiddos. I love how these parents truly "get it" because they know firsthand how much work goes into reaching each and every milestone. Speaking of, tonight I am attending my first "Parent 2 Parent" support group meeting without Maxwell. (I went once before with Max but that didn't work out too well!) I am really looking forward to meeting more parents of special need children.

Kristy, Dylan and Jonah - we missed you all this morning! And we are gone next Monday for Children's for a gazillion clinic visits (again!). So we will have to get together on our own for sure. These two are making progress by the leaps and bounds ! :)

Now Max and I are off to his first official feeding therapy session. Soooo excited to see how they can help us reach our goals.


YAY! I am so excited! We just finished our Speech Therapy appointment and Mighty Max TOTALLY knows his momma! It is sooooo cute! Kim, our therapist, will ask Max "Where's Momma" and he will then look for me. We have practiced with me being in various places and he always looks for me. He has done this a few times before but today it was 100% each time.

Wow, this kiddo really knows how to warm my heart! Thanks Mighty Max! :)


Mommy's cousin, "Physical Therapist Extraordinaire" Kristen, is simply wonderful. Look at this fun gadget she has! (ha ha) All the buttons and lights...I could really have fun!

Mommy and Kristen were discussing different toys and therapy devices (bars, swings, mirrors, boards) we could install in the house to help with my progress. So they were looking things up on the internet. Thanks Kristen for such great ideas...we are going shopping TODAY! :)

Have to fit it into my busy schedule though - I have my therapy playgroup this morning and two other therapy appointments too! Yikes, I am a busy, busy man!

Oh and Mommy wants everyone to notice how strong and absolutely beautiful I look with my head so high! She's just a wee bit proud of my newly developed strength! :) GO ME GO!


This poem was recently posted on our CHARGE list. For those of you who have experienced this journey, it will certainly bring tears to your eyes...

"When Time Stands Still"
by Debbie Hilton-Kamm

It starts with news impossible to hear
It conjures up your every fear
It's when they say your child is ill
That's when time just stands still

In that moment, that suspended time
A thousand thoughts run through your mind
Will he ever laugh and play?
Will I see his wedding day?

All the planning, the hopes and dreams
Are put on hold -- just what does this mean?
His crib is empty, his toys alone
For now, the hospital will be his home

This is a place where time stands still
Where the void's too large to ever fill
For in a hospital's intensive care
Children lie, some unconscious, some aware

And time is measured by a new yardstick
Every second marked by a monitor's tick
Noting every breath the child takes
And every beat his tired heart makes

Just a moment of watching a child writhe or strain
In sedated confusion, or fear or pain
Or pleading for a drink to which you can't oblige
Seems like far more than an entire lifetime

And the children who live far too long
In hospital gowns, trying to be strong
They have old souls, that's what they say
Because in each moment they've lived a thousand days

For those who say time goes by too fast
Sit with an ill child, and see just how slowly time can pass