Only You
It’s 6 am and I have about 30 min before the kid wakes up. His nurse just told me that he has a little fever. Ugghh.. I just need to find a way to stretch out the time between illnesses. Part of that deal is that he in now in school, and I understand from other parents that once they start school, it’s safe to just plan on having a couple years of colds and coughs. Lovely. Well, hopefully he’ll sleep for a couple more hours and fight this one off. This leaves me debating, blog post or pick keys for songs for Friday night’s gig? Songs or blog, blog or songs? Get coffee first, decide after.
Ok, I’m doing both at the same time. “Only You” by the Platters is playing and my hands are shaking slightly from the morning cold, but it appears that I am in fact blogging for the second day in a row. It’s an ugly verb, “blogging” but it gets the job done. Now I just need to keep getting the job done.
I wanted to post about what Maceo eats. “You Never Give Me Your Money” just came on and I can now also hear Maceo stirring. Gonna get this down real quick.
Mace is fed through a little button-like device on his stomach called a G-tube. Also not exactly pretty, but it does get the job done. As we are working on getting the muscles in his mouth going, the kid’s gotta eat somehow so we feed him a mix of foods and supplements that we blend up in the Vita-mix each night.
For the first six months of his life he got milk from me, and then my body said, “You know, I think I’m done. Get him something else cause I’m spent.” We started out with a non-allergenic formula called Elecare. It was disgusting. Maybe it works for some kids, but not for us. I wanted to keep him off of dairy and other potential allergens, cause I figured he had enough to deal with already so let’s not inflame his gut. But the Elecare smelled horrible and he spat up a lot and it was not okay.
We decided to start making our own formula. The first few months we alternated between blends of quinoa with hemp milk and every other day in order to switch up his protein sources, brown rice, hemp milk and chicken. To both of these mixtures, we’d add pureed veggies, flax oil, prunes and other supplements. Later we switched to only quinoa and hemp milk plus the veggies etc. after Maceo’s labs showed high amounts of arsenic in his system. Where in the hell does a 6 month old baby come across arsenic you ask? Well, chicken and brown rice are two places it’s been found.
I know it’s expensive but after this happened I find myself saying, “Buy organic people!” We had been using Mary’s organic chicken and Mary herself wrote to me and said that they don’t use arsenic so I’m thinking we didn’t get it from there. However, evidently, most if not all, commercial chicken “farmers” uses arsenic as a type of anti-biotic on all their chickens, to keep things clean and kill germs that might harm the chickens. Oy vey! Tyson was supposedly the only one that didn’t, but then it came out later that they too used it. We thought at the time that the most likely place we got the arsenic was the rice milk. I don’t mean to scare anybody, just to give this history in case it might be useful to anyone. I guess it’s hard to get totally clean food unless you’re growing it yourself cause then you know exactly the journey that the food has been on en route to your table.
Long story short, we played around with these ingredients for a few months until we landed on the recipe that works the best for the kid.
Maceo’s Vita-mix Grub:
2 cups Hemp Milk
2 cups Quinoa
2 tablespoons Veggies (carrots, peas, green beans ie: non-stringy veggies for ease in the G-tube)
3 tablespoons Non-Gmo Tofu
4 Prunes
4 teaspoons Flax Oil
½ Avocado
Recently we added the avocado to get the calories up. We also tried alternating the avocado with 2 tablespoons of tahini but it didn’t seem to keep things moving if you know what I mean. To this we add a powdered calcium/mineral supplement for G-tube guys called Nano-vm, and various other supplements. He gets 5 feedings a day, at 7 am, 12:30 pm, 4:30 pm, 9:30 and a small one around midnight.
Next up, a totally sexy topic: G-tube feedings? What is that like? It’s really not too bad. Joe keeps saying he wishes he could get one cause he finds it a real pain in the ass having to stop what he’s doing to eat. He likes the idea of just sticking it straight into his stomach so he can keep on living his life. I’m amazed by this cause I’m a total foodie, but as my grandmother would say, “That’s what makes horse races.”
Small Victories
Small Victories
There are a few things I’ve been meaning to post for months now. Today I’ll do one, and try to get the others down soon as well. As things have been improving, we’ve spent less time on the computer and more time having fun. But I did want to clarify a bit about an initial post that I did regarding Maceo’s suck/swallow reflexes. After the first round or two of HBOT, we heard sounds from Maceo that we hadn’t heard before, and we saw an alertness, a brightness in his eyes, his whole body relaxed and we saw less secretions (read drool) coming out of his mouth. We are constantly on the lookout for progress and success for him, and so we were overjoyed at these responses from him. I realize now that I made it sound as if his swallowing had improved to the point where he had overcome that hurdle completely. That is not however the case. He did at that point, a year and a half ago, begin to keep up with his secretions much better than he had been before, and he did start eating by mouth, but when we did the Modified Barium Swallow Study the next November, he did aspirate each time he went to swallow. Plainly put, he failed the test.
The MBSS as it is called, is a test in which barium is added to food that the kid normally eats and then that is given to him as he sits in a special feeding chair. His mouth and throat are X-rayed while he attempts to swallow. I was absolutely shocked for two reasons. First, because after they put the food in his mouth, he just sat there and did not swallow at all. He just looked at me unhappily. Secondly, when he did finally try to swallow, the radiologist kept shaking his head saying, “Nope, nope, he’s aspirating”. But the X-ray doesn’t lie. They stopped the test fairly quickly as aspirating food is a perfect way to get pneumonia.
For about four months we had been giving him about 1/4 of a cup of carrots, peas, green beans or squash each day. It looked like he was really enjoying it, and I thought triumphantly each time I fed him, “Ahhh! Maceo the warrior is swallowing now!”. The barium with the food probably tastes horrible, and it looked to me as if during the test Maceo was thinking, “What is this disgusting crap you are putting in my mouth?” As he sat there with it on his little tongue, he was looking at me like, “What am I supposed to do with this Mom?” So, at the time, I thought to myself, “Well, he didn’t swallow cause there was a lump of chalk in his mouth.” But the truth is that, for someone to be able to allow food to go down wrong pipe, there’s got to be a serious inability to protect their airway. The mechanism of sucking, swallowing and breathing is an intricate minuet of processes that ultimately protects the airway in addition to delivering food and oxygen into the body. I had to come to terms with the fact that in order for Maceo to safely eat, there had to be no circumstances under which he would or could allow food to slide on down into his lungs. That was a shitty day.
At that point, we stopped feeding him by mouth. I had been full on with it for months. We had also been taking him for VitalStim feeding therapy in Pasadena three times a week and did oral stimulation exercises at home like clockwork. After that day, I took my foot off the gas and started trying to focus on what would actually be comfortable and safe for Maceo. Until then my viewpoint had been we must do everything, all the time, without fail because that would give Maceo the best shot at a full recovery from his injury. The failed MBSS shone a light on another viewpoint that I had turned away from, but which had been given me by various members of Maceo’s team at various times since we got out of the hospital in May 2009. His doctor, feeding therapist, vision therapist, early intervention teacher, pulmonologist, dietician and occupational therapist had all said at various times, in various ways, “Let him rest”, “He’s just a little guy”, “He’s so young”, “It’s important for him to be feeling good, or whatever you’re doing won’t work so well”. In theory, I understood this but I had the feeling that because babies are small, and limited in communication abilities, that they are often left alone, and underestimated in their abilities to understand what’s going on around them, and to progress in unseen ways. Whenever someone would say something like that to me, I’d nod and try to listen politely but inside I’d be thinking, “Yeah but your kid doesn’t have a brain injury and I know he can handle this.”
I’ve relaxed a lot since then. As Maceo’s pediatrician Dr. Gantan said after the swallow study, in not swallowing that day Maceo may have been saying, “I need a little more time to work on this.”
We are taking our time now, moving ahead slowly but surely. We stopped the VitalStim after the MBSS to give him a break and relaxed a bit on the oral stim exercises, taking our cues from him. We started up with giving him little tastes of pureed fruit in this fall, and it looks like he is starting to enjoy it again. We do it with his oxygen on and his pulse oxymeter attached to his toe so we can monitor his oxygen levels. This is to ensure that if he aspirates that we will see a dip in his O2 levels and could quickly stop and suction him and keep him safe. He started going to the UCLA Early Intervention Preschool in December, and when his buddies eat lunch, he watches them very closely. Perhaps he’s thinking, “Oh it’s not just adults who eat? Little kids do it too?” I’ll keep you posted on what happens next.
February 1, 2011
We are at general pediatric appointment today at CHLA. Mace is getting stronger in many ways all the time but a couple months ago tested slightly low on his thyroid. We had it retested yesterday so I think we’ll get results today. The MRI we did a couple weeks ago showed just the original injury to his brain from the lack of oxygen of unknown origin around the time of his birth, I was a little confused cause I thought we might see improvement from the test. According to the neurologist, this was a good result because we don’t see any new injury or deterioration to Mace’s brain. The improvement we see is in what Maceo is doing every day.
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.