YAY! SUCCESSFUL BIG BOY BATH!!!

Mom has been been buying me all kinds of different seat gadgets to see what would help with my bathtime...and it has been quite a challenge! I am too big for my baby bath, but not yet ("YET" is the key word!!!) strong enough for a big boy bath. I'm an "in between" kind of kiddo! :)

Last week we tried this new seat and it didn't work, but today we had some success. Ok, I must admit it still wasn't perfect (I was working so hard that my breathing sounded like I just finished a marathon!) but it was HUGE progress! I even managed to sit independently for several seconds at a time and then would lean on the protective device around me. It was soooo exciting for me and Mommy!!! And are these photos adorable or what??? :)


You are so silly Mommy. :) Did you really need to bring the camera to our bath?


















My head is a little heavy. I'll just rest it here for a bit and study the water.


















Hey look what I found!














Not only does this ducky change colors, but it is chewable! Love it! :)

MAX LEARNING HOW TO POST

Mom's camera is distracting me from posting...


















I got to stay focused. I have lots of updates. Let's see, what should I tell my fan club about today??? Hmm...should I talk about my achievements or simply focus on how absolutely delicious I am?













I'm kinda sad. All this typing...my fingers are tired. And yet there is sooo much more I could say about myself!

ANOTHER MILESTONE!

Today we had an appointment with our sign language teacher Meril, and we continued our work on basic communication skills.

Along with some signs, we worked with Maxwell on taking toys out of a box. Sure enough he did it! (Not the sign, but the taking toys out of a box.) He has been able to do this for the past week or so, but today the therapist said we could officially "mark" it on his goal sheet! YAY! I love checking things off of a list! The next goal is to learn how to put them back in! Right now he just loves taking things out, throwing them, and watching me retrieve them! This actually is a great game for learning the signs "more" and "where is it?". We did that a gazillion times today and I think Mighty Max got quite the kick out of it! :)

She even recommended I get some new "cause and effect" toys that require higher learning because she thinks Max is making some good progress! That was exciting to hear! :) Way to go Mr. Max!!!

He was being soooo funny in our session with this toy box...he would practically put his entire head in the box looking for another toy. I was laughing and laughing and then Max would lose his focus and smile at me! :)

PAULA YOHO?

Hello Paula!!! After reading your post, I tried to google you to find you but no luck! How the heck are you girlfriend!?!? :) It's been years! :) Email me (amysmckinley@aol.com) and let's get in touch! Love, Amy

PROGRESS REPORT FROM MAX!

I had a very good session today with my Occupational Therapist Eileen. And since I have been making such great progress, Mom thought she better take a few photos to capture these fun milestone moments!

I am working really hard learning how to sit unassisted. Last week we started having me lean forward and play with toys on this bench...and it helped so much! Mom started crying when I did it the first time! She gets so excited about my progress!













Hard at work at my bench! Eileen is right by my side helping if I start to fall...she's so great!











Now Eileen is trying a different technique...sitting me on my bench and having me reach for the sticky toys on the mirror. But c'mon Eileen, how can I focus on the toys when I can look at my own adorable reflection?!? :)









This position also helps strengthen my upper body. It's not one of my favorites, but I'll give it a go for Eileen and Mommy.

Strengthening my legs is another priority. I used to absolutely refuse to put any weight on my legs, but slowly but surely I am making progress in this area too! But only on mats...I just don't like my little feet to touch carpet, it freaks me out!

FIELD TRIP TO THE BEACH

Yesterday was our playgroup through the Whatcom Center for Early Learning, and we had our last summer field trip. We went to Birch Bay and played on the beach. Max was a little hesitant about the sand and water (and bright sun!), but we both enjoyed watching the other kiddos...especially our friend Dylan!


Max wasn't too sure about the therapist putting sand on his feet. (We are working through some sensory issues and this is part of his "therapy.) But he didn't completely freak out, so that's progress!















Dylan was soooo funny in the sand! He was dirty from head to toe!

(I felt so bad because Max had a major blow out when we got there and we borrowed Dylan's extra outfit....which left Dylan very dirty for the drive home. Sorry buddy! Thanks again Kristy!)













Dirty Dylan and his beautiful and VERY pregnant mommy Kristy enjoying the beach!
















There always is "snack time" at playgroup. Max is the only one in the group who cannot yet eat orally, but we still try and involve him. How cute is he in his plaid hat gumming this graham cracker!?! Actually I thought he was just gumming it, but then I heard a crunch and realized his tooth was now big enough to take a bite! He quickly spit out the cracker...I think he was a little confused!

POSSIBLE SEIZURES

Yep, Max is at it again. The past few weeks his twitches and "absent" spells have increased and that certainly has me worried and questioning. And more troubling is that several of his therapists have noticed it recently too.

And today at play group (field trip to the beach!) , one of the teachers also noticed it. No one knows for sure what these "episodes" are, but they are concerning.

I put calls into our PCP and our team at Children's. Last week I talked with our PCP about it and he didn't seem overly worried since the initial EEG appeared normal. However, I have learned from other CHARGE parents that some of the tests can be misleading and give false hope. So we are pushing for a neurology consult and gain their insight. I am trying to take it in stride and not freak out too much, but this is one issue I was soooooo hoping we could avoid.

HEAVEN'S SPECIAL CHILD

A good friend of mine in WV (thanks Nancy!) sent this beautiful poem to me. Thanks everyone for the encouragement after yesterday's event. I love how much you adore my lil' guy! :) He definitely has won the hearts of many!!!


Heaven's Special Child

A meeting was held quite far from earth.
"It's time for another birth"
Said the Angels to the Lord above,
"This special child will need much love.
His progress may seem slow,
Accomplishments he may not show,
And he'll require extra care,
From folks he meets way down there."

"He may not run, laugh or play,
His thoughts may seem quite far away.
In many ways he won't adapt,
And he'll be known as handicapped"
So let's be careful where he's sent,
We want his life to be content,
Please Lord find the parent who
Will do this special job for you."

"They may not realize it right away,
The special role they're asked to play,
But this child sent from above,
Comes a richer much stronger love."

"Soon his parent will know the privilege given,
In caring for this gift from heaven,
Their precious gift meek and mild,
He is Heaven's Special Child."

-- Author Unknown

"WHAT'S WRONG WITH HIM?"

I have often wondered if people can tell something is "different" about Maxwell. Can they see he is not a "typical" child...do they notice his facial differences? On a quick glance, do they notice his delays and quirks? Or are they simply attracted to his inner spirit?

My love is so strong for Max that I view him like any other child. I think he is absolutely gorgeous and incredible. Deep down, I know there are "differences" but I have wondered, are they different enough for others to notice?

I usually try and make all his wires and machines pretty inconspicuous. However, when they are noticed, people often ask "what's wrong with him?" And a few times, I initially forget about his wires and are somewhat offended and respond with "nothing is wrong with him." Then I remember the oxygen backpack and I'll just explain "he just has some lung issues" and I let it go at that. My answer all depends on how they ask. If they are asking with kindness, I will then use the opportunity to increase awareness about CHARGE, special needs, etc.

Once I was in the grocery store with my sister and I told her to observe all the people who stare at us (when his machines are noticeable) and try to act like they are not staring...especially when his alarms are sounding. First she thought I was a bit paranoid, but then she saw it happen too. But then of course she started teasing me that perhaps they were staring because I was constantly kissing Maxwell! :)

So I know that when his machines are around, it is obvious this kiddo has something going on. If it were me (pre-Max), I would probably sneak a glance too and perhaps ask questions if the parents seemed open about it. It would be out of wanting to learn more about the child, not just to be nosy...and I think that is totally acceptable for people to do.

But without the machines, is it still obvious he is not a "typical" baby? Do they still wonder?

Well the answer, from at least one person, came today...and that "defining moment" (not sure what else to call it) finally happened.

Max and I made a quick run to the grocery store earlier today, and all was well. He has been off of oxygen all day (the meds are doing their job!) and I even had him off of his monitor for a few hours...so he was tube free.

As we stood in the checkout line, I was kissing his feet and telling him how beautiful and amazing he was. When I was paying, the cashier commented on how cute Maxwell was and how much she always enjoyed seeing him when we shopped there. Then she asked, "So what does he have...Down's Syndrome?" Her question, while simply out of kindness and simple curiousity, totally caught me off guard. I have never once been asked (when his tubes and machines are hidden) about his condition. It was so strange. I wasn't angry with the woman...not at all. She was very nice, but little did she know what an impact her question had on me. She was able to see his "differences" and actually felt comfortable enough to ask about them.

It was quite a moment. Definitely not a good moment...but not an absolutely horrible moment. (Ok, I did cry a little in the car...and I was a little numb all afternoon.) Just a defining moment in a special needs mom's life when their child is noticed for being "different." I have a feeling this will be the first of many, many, many...