Maceo Loves his iPad!

We got Maceo an iPad not too long ago because it’s a simple way for him to interact with the different apps that are available. All he has to do is touch the screen! The fine motor skills don’t have to be perfected for Mace to have fun & learn his ABC’s, etc. There are many learning tools and communication devices for kids with CP and other motor issues but in Holly’s travels and conversations she realized that Maceo could get the same benefits by using the iPad and buying a some apps for a few dollars each instead of hundreds and thousands of dollars for essentially the same thing.

Pool Time!

Maceo swims in his pool everyday for 30 minutes. Usually we are rocking out to some music. He’s really been into Marvin Gaye recently.

Group Art Show / Benefit for Maceo

Many thanks to our friends at NEXT Model Management.

Here Comes The Sun

Maceo is 14 months old this week.  Things have changed a great deal in the last month.  On Friday we did our 21st dive of 100% hyperbaric oxygen therapy.  I have been driving him down to Irvine there every morning at 6 am to do it at the California Integrative Hypbaric Center.  The changes from this therapy are very exciting.  I guess if I had to come up with the most outstanding change it would be Maceo’s delightfully increased awareness and marked improvement in motor skills.

These days, when you look at him and smile, much of the time he will smile back.  When you point the camera at him and ask for a smile, he will smile back. If you look at the recent photos on the photo section of this site, those huge smiles were responses to prompts by the person snapping the pic.  My greatest wish for him appears to have come true:  my baby is enjoying his life.

When we were in the hospital, as we moved from the denial that anything was amiss, and everyday felt like further descent into the deep dark mysteries of brain injury, I would try to simplify things.  I remember saying to Joe more than a few times, if I can at some point just see my baby smile, all will be ok with me.  If he can just progress to a place where he can enjoy his life, in whatever condition his body and mind exist, everything else will be fine with me. I just want to see my baby smile.

In his first few weeks of life, he’d smile quite often.  The neurologists we were dealing with quickly cut in to our joy saying that those smiles were reflexive, and not responsive.  “Fuck them!” we’d say.  “FUCK THEM!!”  We always felt that Maceo was “there” with us, through all the beeps and blips and wires and doctors and pokes and feeding tubes etc.  We felt that he was pissed about the chaos around him and perhaps in him, but the guy, the actual being, was present no matter what was going on around him.

At about two months old, around the time we came home from the hospital, we noticed that we hadn’t seen any smiles for a few days.  A few days became a few weeks, and then a few weeks became a few months and then I wondered if I would ever see him smile again.  It was a terrifying feeling that grew every day as days then weeks then months passed with no smiles and all we saw was the blank look that you can see on Maceo’s face in the early pictures.  That’s when my mantra took shape.  “If I can just see him smile, I can handle the rest of this shit.  Just want to know that Maceo has some pleasure, joy, love, happiness in his life.”

There is a longer version of this story to tell.

I’d like to get to a place where I can tell the whole thing so that other parents can visit Maceo’s world and ideally get some ideas, solace, inspiration or hope from it.  My viewpoint is that salvation exists outside the box and that postulates create realities.  The more corroboration I found for that viewpoint over this past year, the easy it was to disagree with those who would have me prepare for the worst.

Around ten months old, as Joe threw Maceo in the up in the air, we noticed that he was smiling as he flew up out of his dad’s arms.  We freaked out, “Oh my god, he’s smiling!!!!!!”  I had the tricky job of catching those smiles with the camera.  It took me about 5 minutes to get it together and just stay low so that when the little man came back into frame I could grab ‘em.  Those shots of him in the Guns and Roses shirt on the photo section of this site are those shots.

Since then the smiles have steadily increased.  He had pneumonia a month ago and he emerged from that smiling and cooing responsively.  We started the 100% HBOT at around that same time and it appears that that is when the smiles in conversations started happening. These days he smiles at music, jokes, tickles, his dad’s voice, books, toys etc.  I feel relief at every turn.  My baby is enjoying his life.

A Message to Maceo

I’m glad you stuck around kid.
You changed my life.
You made me stand up & be a man.
I experienced the most pain & heartache that I ever have in those first few months.
And every minute, every hour, every day was worth it because you decided to stay with us.
I watched you be born without a breath in you.
I watched you falter & stop breathing again weeks later.
More than once.
I asked you to stay.
Your mom asked you to stay.
And you did.
Thanks bud.
I love you.

100% HBOT

Maceo has been going to Irvine every weekday morning for about 3 weeks now and has been doing Hyberbaric O2 Treatment at 100% oxygen. We’ve been doing HBOT with Maceo at home in our chamber since he was about 3 months old. Both the home chamber and the one in Irvine are set at the same atmospheric pressure and they essentially pressurize room air, forcing oxygen into the body. The difference for Maceo when he goes to Irvine as opposed to doing the treatment at home is that he puts on a hood in which 100% oxygen is pumped inside.

After about 10 treatments (10 hours), we noticed Maceo really smiling a lot! He’s smiling from being tickled, from being smiled at, from being told a joke, from being read to, from being kissed and my favorite, from having raspberries blown on his tummy! He’s becoming more and more vocal also. Maceo started making “goos” and “boos” a while ago but after this new HBOT, he seems to be making some different sounds. Today Holly and I agreed that it sounded like he was definitely trying to talk.

We’re very excited about this treatment. Maceo is scheduled to do 40 hours (2 months) of this 100% HBOT in Irvine and possibly another 40 depending on the results and if we think it can help him more.

You can find out more about HBOT and the facility where Maceo goes HERE.

Here’s a pic of Maceo with his friend Monica inside the chamber.

More smiles…

Maceo has been smiling a lot and it’s like magic when you see it.

At first he was smiling when I threw him in the air and caught him.

He’s been smiling some when he gets out of the bath and I tickle him while I’m putting on his pajamas.

The other day I came home from driving around and doing errands and Maceo was sitting on Holly’s lap. Holly said to him, “Hey! Your dad’s home!” Naturally I went over to him and knelt down and said “Hey buddy!” or something like that. Maceo turned his head and looked right in my eyes and smiled as big as ever. I started smiling and laughing because it was so cute and so awesome and it was the first time Maceo has smiled in direct relation to being smiled at. The more I laughed and smiled the more he smiled. I couldn’t get enough.

Moments like these make life worth living.

Some big smiles!

So Maceo is big enough now that I feel comfortable launching him into the air and catching him. It’s the old father and son game that scares the hell out of pretty much everyone else around except for father and son.

Recently I started playing this game with Maceo and I could see it in his eyes that he totally enjoyed it. I say “I could see it in his eyes” because although Maceo smiles, he doesn’t do it all the time for whatever reason. He may grin about something and sometimes give a pretty big smile but it’s usually pretty quick so it’s hard to catch on film unless you just happen to have the camera ready.

Well the other day we had a little extra time to hang out together and just have fun so I tossed him up towards the ceiling a couple of times and I immediately noticed that it looked like he was grinning as soon as he was airborn. I kept going because I wanted to see if he was in fact smiling as a direct reaction to me throwing him up in the air. And sure enough, the more I did it, the more he smiled. The smiles got bigger and lasted longer and I thought he was going to start laughing at any second.

Holly had the tough job of shooting a moving target but she did a great job. The whole room was in glee watching this kid fly in the air and smile repeatedly.

Seeing this happen was the most beautiful thing I’ve ever seen so I thought I should share it on the blog.

Maceo’s first Halloween

hey guys!
here’s how my halloween went.
i went to a party with my folks.
i dressed up as a skeleton!

Continue reading Maceo’s first Halloween…

…and some days are harder than others

My heart is heavy and dark today.
I went to someone’s naming ceremony
and I saw three babies younger than Maceo
who are all doing a lot more then him.
It upset me.
I left early.

I’ve been online this morning at my computer
and last night on my iphone Continue reading …and some days are harder than others…