Saturday, October 28, 2006


Many of you have posted or emailed me requesting Maxwell's clothing size, so I thought I would just post it here. :)

He is definitely growing and looking good these days! He now weighs nineteen pounds! :) YAY! His clothing size changes a bit based on the brand. For the most part, he is in the 12 - 18 month size. (I tend to keep his clothes on the looser side so I can get to his Gtube easier.) I know that GAP /Osh Kosh pants tend to run large (for Max), so he is in the smaller size for that...usually 6 - 9 or 6-12 months.

Thanks for caring so much about this precious lil' man. It really warms my heart knowing how many lives he has touched. :)


Yep, we are checking "tricks" off of Mighty Maxwell's goal list every day! So fast that it is hard for his therapists to keep track of all his accomplishments! I am absolutely stunned with his proud of my lil' man!!!

His sign language teacher (who also helps in general communication skills) checked off FOURTEEN tricks. How cool is that??? She was completely blown away! And she was so impressed with how attentive he was being with me. :) (Love that!) Every time he does his trick, he looks to me for his praise. Sooooo cute!

Some highlights from his latest tricks include...

1) Putting things IN a bucket. This is HUGE! He has been able to take them OUT for quite some time, but he wasn't moving on to the next milestone very quickly. And now he loves doing it. I told him that once he can walk, he can help me clean up his toys! hee hee :)

2) Rolling TO me. If I sit about five feet away from him and encourage him, he will happily roll to me. So cute! This purposeful rolling is big progress.

3) Taking turns in conversation! I love this trick so much! I will "Ba ba da da" and he will then make sounds...and so on and so on and so on. He won't necessarily imitate the exact sounds but he will converse! And sometimes he will actually imitate the "ooooooohhhh" sound or the raspberry making.

I love this trick because it is so reassuring that he wants to communicate...he is a VERY social boy! That is important to me!

4) Initiating a game. This is one of my VERY favorites!!!

When we drive to Seattle, it is supposed to take less than two hours but often times, but often times it takes much longer because he is cranky or needs medical intervention (i.e. oxygen, tube feeding change, etc.) To calm him down, I will pull over and play with the lights above his seat...he is absolutely fascinated with lights (most hard of hearing children are). I cover the lights on and off with my hand and make a firetruck sound. He LOVES this. Well on our latest trip to Seattle, we had many, many stops and soon enough he decided he could tell me to do the light game. He would raise his hand (imitating me) and I would then do the lights. We did this over and over and over again. It was awesome. This is the first game he has ever initiated.

This trick continued when we arrived home. As soon as he noticed our ceiling light, he raised his hand for me to do the game. (Generalization is another important milestone.) So of course I have spent much time now flicking the light switch on and off. I called over Eliz and several friends yesterday to show off our new trick!!! :)

This was on our way home from Seattle and he was absolutely exhausted and not very happy. But yet he still played the game with me. Not with much spirit as you can see...but still he got the concept!

* We have many more tricks to share, but I have a lot of things to do this morning so I best run. Have a great day everyone and who knows what new things Max will do today!?!? :)

Friday, October 27, 2006


Maxwell has been very congested lately and needing a lot of suctioning...I mean A LOT! (With his narrow nasal passages, you have to keep them open as much as possible.)

But you know what? I'm not complaining because he isn't complaining. :) This kiddo is unbelievably amazing! He actually is now letting me suction his nose with NO crying!!! I have done it to myself just to see what it feels like and it's not fun. But yet Mighty Maxwell tolerates it like a champ! I have to do lots of funny faces when I am suctioning for him to be ok with it, but hey, whatever works! :) He truly is amazing.

The other night he was having such a difficult time breathing in his sleep. Then he started coughing so hard that he was crying miserably. So once I calmed him down, I went to suction him and he actually fell right back to sleep during the process. I was even able to give him all three of his inhalers...and he didn't fuss at all about it.

I hope this new "acceptance" phase is here to stay...loving, loving, loving it!!! :)

Just for proof of how cool this kid is, I had my mom take some photos of him sleeping through all of this!

Max's room can look like a mini hospital at times...that's his oximeter and stethoscope on our left, suction machine on the right, and oxygen tubing by my leg.

(Oh, and please excuse the dirty socks...just took out the trash in my socks! Opps!)

How cute and cuddly is my lil' man...even when receiving an inhaler???

Thursday, October 26, 2006


Time for guild membership renewal at Children's Hospital!

As most of you know, we started The Mighty Maxwell Guild earlier this year to celebrate Max's life and support the work of Children's Hospital. The guild helps provide much needed funds for the Uncompensated Care Fund.

Children's never turns down a child because of a family's financial constraints. This fund ensures that each and every child has access to quality health care. I think that is truly remarkable and want to do everything I can to help their efforts, and I hope you will join us! :)

We would love your support of Max's guild by joining as a member. The membership levels are as follows:

Basic Membership - $20
Babino Membership - $100 - $999
Life Membership (one time only payment) - $1000
Senior Citizens - $10 Junior Guild (ages 18 and younger) - $10

If you are interested, please email me ( your contact information, and I can send you the envelope. Or you can simply mail me the check directly and I will turn in all the checks together.

*If you are already a guild member, please send in your dues to renew your membership for the upcoming year.

Thank you very much for your support of The Mighty Maxwell Guild. Together, we can help some truly wonderful children. :)

Wednesday, October 25, 2006


Maxwell had his testicular ultrasound on Monday, and we met with the urology specialist on Tuesday to review the results.

The specialist was absolutely amazing. He was very informative and thorough (and very funny too!). He determined that Maxwell will indeed need surgery to bring down his testicles. Fortunately they are both present, they simply need brought down. The surgery is fairly simple but will require general anesthesia, intubation, etc. Most kiddos would be able to go home the same day but with Max's lungs and heart condition, he will probably have to spend the night...hopefully just one night!

Another issue we discussed was circumcision. With all that Maxwell has endured, I didn't want to put him through another procedure that was not medically necessary. However, the doctor brought up a good point that was difficult to hear but important to consider. He thinks this procedure would be a good precautionary measure should Maxwell need long term care. As much as I don't think that is going to happen (you gotta be optimistic), I suppose it is better to plan for the worse. Additionally, Max has some other minor issues "down there" that need surgical we will be taking care of all of this at one time.

The surgery is not until February. Of course I have been trained well by the doctors and immediately started racking my brain for any other procedures we could combine with this one since he will already be under anesthesia. The specialist laughed at how I was already thinking ahead on that one! :) I am going to check with a few of his other doctors...I think ENT will definitely want to check out at least his nose and ears.


I decided it was finally time for Mighty Maxwell to receive a professional trim. I was so nervous! Funny considering all that we have been through that a simple hair cut would scare me. :)

We had some time after our afternoon speech therapy appointment, so we ran over before I changed my mind. Max was amazing as always! He wanted to stand up in my lap and he was smiling. Not a single whimper!

He looks quite dashing in his new sleek do. No worries, he still has plenty of beautiful curls and the longer locks will grow back quickly! :)

Here's his before shot...a little on the wild side! (How cute is he in his blue cape???)

Time to get started Maxwell!

Looking to Mom for approval!

And here is the "after"...the new and improved MIGHTY MAXWELL! Looking good my boy, looking real good! :)


Mommy introduced me to a fun new friend, Ronald McDonald, during our trip to Children's. She said that he makes really yummy french fries and someday I can enjoy them too! Sounds good to me! :) But I gotta hurry up and get my swallow more coordinated, that's for sure!

Here are some super, super cute photos of me and Ronald! ENJOY! :) (Notice my new Halloween shirt "Little Wild Man" appropriate!)

Mommy, check out this guy's hair! It's crazier than mine!

Me and my new friend!

Tuesday, October 24, 2006


Another child in our CHARGE community has passed away, and we are mourning the loss of this sweet little girl. My friend Sarah wrote about it today in her blog and her words echo my thoughts so clearly...

The relationship I have with my friends on the CHARGE list-serve is so bitter-sweet sometimes. Although I know very few of them in the traditional, in-person, "real" sort of way--the common bond of our children has forged a very unique kind of kinship.

I feel a swell of pride when I read about the 10 year-old who needs a walker to get around receiving the much anticipated violin from her parents. I sense the lonliness and isolation one mother has learned about her 17 year old son--from his 14 year old brother who now attends the same school--the other kids know him merely as "the boy who always has an adult (his ASL interpreter) with him." And I can almost taste the victory from another parent relating a sucessful surgical procedure or favorable outcome on a diagnostic test.

But the most real and most difficult news to hear about is the loss of a child. No matter how many times it happens, no matter how much or how little I knew of the parent or child on the list, reading that news still catches me--almost like taking my breath, and wadding it into a little ball that stays lodged in my throat.

Over the weekend, another child in the CHARGE community passed away. I don't know all the details, but the parents found their 2 1/2 year old daughter in her crib on Sunday morning. She had pulled her trach out, and by the time her mom and dad came to check on her, she wasn't breathing and had no pulse. I know her mom has expressed that she "should have been watching her every second"...but that just isn't humanly possible. Again, not knowing the details I don't know if the family had any nursing care or if they had a monitor. Please keep them in your thoughts and prayers, during this unimaginably difficult time.


We met with my surgeon today, and he and Mommy decided to hold off on redoing the Nissen...for now. (That's the surgery when the doctor wraps a portion of the stomach around the esophagus to help with vomiting and reflux issues...common with CHARGE and being a preemie.) Whew, what a relief. (I had a very difficult recovery from this surgery last year!)

If it becomes enough of a problem (as it was a few weeks ago) that the vomiting is hindering our quality of life significantly OR if I stop growing OR if I begin to develop more respiratory problems (i.e. pneumonia), we will revisit this and probably move ahead with the surgery.

The second time around has a lot more potential complications, including cutting some very important nerves, rupturing the spleen, damaging the stomach, etc.

So obviously Mommy and I are doing to do EVERYTHING possible to avoid this "redo" surgery. Plus, they said if it failed the first time, it is likely to fail again the second time.

We will just continue our efforts with the various feeding regimens we do, and hopefully Mom doesn't get too frustrated and I stay healthy and growing. Let's hope for the best! :)


I gave Mommy a pretty hard time in Seattle. Oops!

I kept her up pretty much all night...both nights. It was miserable. I was having difficulty breathing due to my heavy secretions and that would wake me up. But I think what kept me up was the different surroundings. I'm not used to being outside of my home for overnight stays. I have always been either at the hospital or my home.

Once Mom managed to get me back to sleep, she would try and put me back in the crib and I would cry immediately. This happened all night long. We tried to cuddle in her bed together, but she was worried she would fall asleep and that wouldn't be very safe. I tend to roll a lot in my sleep.

What made it worse was all my portable machines with short wires, tubes, etc. She was trying to calm me down by walking around but kept tripping over everything (small room) and then she'd be holding me and also trying to pick up the O2 tank, feeding pump, etc. We kiddos with extra "wiring" are definitely not easy to calm down when we are all hooked up!

Hopefully we are both able to catch up on our sleep tonight. We are home sweet home and we have a nurse coming tonight. Mommy is eagerly awaiting the nurse's arrival so she can catch some ZZZ's. :)


What a few days! WOW! I had a lot of appointments. We got some answers and also have some new issues to address. Mommy seemed a little concerned but for the most part, all is well.

We were excited to run into some of our favorite nurses and doctors from last year. I must be pretty popular because everyone seemed to know my name! That was fun! And everyone couldn't believe how great I am doing. Mommy was super proud to show me off!

Mommy was also very proud of my patience, because we had a lot of waiting, waiting, waiting. The hospital was extremely hectic and all the clinics were WAY behind in their schedules. Fortunately I am an amazing little kiddo (that's what Mommy and Grammy kept saying!) and I was tolerant. They are pretty good entertainers and snugglers!

And as always, the camera served as a good distraction...enjoy a few from our trip!

I was bored waiting for the doctor, so Mommy let me pull her hair. :)

Here's me and Grammy talking, "BA BA NA NA DA DA." We are working a lot these days on copying and conversation.

Enough talking for now, I need to catch some ZZZ's. No time for a real nap, so I just snuck in some shut eye in the waiting room.

And here I am snoozing again in the waiting room the next day. Thanks Grammy for the snuggle!

We brought along my favorite toy and Grammy played with me. I am completely addicted to this toy box! The only problem is that I love, love, love standing with it and often come tumbling down with the toy on top of me. Mom has to keep a close eye on me!

Check out my side sitting! This requires a lot of balance and strength!

Sunday, October 22, 2006


We had such a fun afternoon first REAL playtime in a park!

This was also my first time really enjoying an outdoor swing. At first I was quite hesitant to touch the swing...that rubber is a weird texture. But Mommy kept trying and trying, and finally I got the hang of it and away we went!

I have practiced swinging with my OT and PT during our sessions, because it is helpful for my vestibular input and my core strength and balance. But this time was JUST for fun! (Ok Mom did make me do some PT moves...but she did it all while making silly faces so I still thought it was fun!)

Check this out, I'm touching the swing!

Yippee!!! Look at me!!!

That was fun Mom! Let's do it again!

Aunt Elizabeth and cousin Thomas were with us too...that was great! We are always amazed with Tom Tom...he is so big, strong and adventurous! What an inspiration for me!

Here we are chillin' in our swings.

Tom Tom was walking all around the park. He even walked up these very steep stairs to the slide...all by himself!

Look at me standing...this is my favorite thing to do.

Oh and how can I forget my first big slide? So cool! We were going so fast, Aunt Eliz barely got me in the photo!

And this was a perfect swing for me and Mommy. Good time to cuddle!

With all of that excitement, I am wiped out! Time for a nappy nap!


Tonight we head to Seattle for a 2 1/2 day stint at Children's. We have lots and lots of clinic visits again. Some of the highlights include:

Craniofacial - Does he have a submucous cleft palate? Will this require surgery? Is his "soft spot" size acceptable - still not completely closed? What about his jaw? Max's lower jaw is recessed and during his hospital stay, there was talk that in the future he may require surgery if his gumlines don't match up.

Urology/Testicular Ultrasound - We will be doing the prep work for Max's surgery to bring down the testicles and making sure that he indeed needs this procedure. It will most likely happen very soon.

General Surgery - What should we do with Maxwell's Nissen??? There is great debate on this one.

Audiology - This will be Maxwell's second behavioral hearing study. The first he did "ok" but he wasn't really paying attention to instructions. But he has developed so much in the past few months that I am hoping this goes much better!

Hopefully these overnight stays will be easier than last time. Practice makes perfect, right? Plus Grammy is in town and is joining us on our adventure too. She can help watch Maxwell while I load his mini hospital into the room! That was very tricky last time.

Max has been very congested the past few days and has had difficulty sleeping through the night. He's requiring a lot of suctioning, nebulizers, and CPT (clapping of the chest and back to move the congestion in the lungs). So I am curious to see how much sleep I will actually manage. No sleep for two nights yet managing serious conversations with doctors all day...hmm, that reminds me of our 6 months in the hospital! :) However, as an outpatient you have to coordinate a lot of the studies, appointments, etc. yourself, so you have to really be on your toes. It will all work out...we'll just keep thinking of it as a fun lil' adventure! :)

Off to Seattle we go...