It took us some time, but we eventually started getting used to life with Cystic Fibrosis. Kennedy learned how to swallow her pills at a very young age, which meant no more opening or crushing them into applesauce (to this day, I do not eat applesauce because of how much we had to feed Kennedy in the first year...barf!). She also eventually started to hold her own nebulizer for treatments, although that took a little more time. There were still a lot of bumps in the road, but we were managing.
We originally took Kennedy to Children's Hospital in Detroit, but some things were starting to rub us wrong about the place. First of all, it really wasn't in the nicest area of Detroit and the cleanliness inside the hospital left a lot to be desired. But more importantly, every visit we started feeling more and more uncomfortable with our doctor. We had TONS of questions (Holly did most of the talking...yeah, I know that's odd considering how she and I are, but she was the one that took the bull by the horns when it came to CF), but each time we asked them we felt as though we were inconveniencing the doctor. He would literally stand by the door with his hand on the handle while we were asking questions, and didn't seem interested in what WE had to say. I specifically remember Holly asking him one time about supplementing her meals with magnesium because she had read something about magnesium deficiency in CF kids, and the doctor was outwardly annoyed at her. He said something to the effect of, "Just give her what I tell you to give her and she'll be ok." Well, that wasn't good enough.
We made an appointment and took a little trip to Ann Arbor to visit the CF center at Mott Children's Hospital on the campus of the University of Michigan. I think we were there for about 5 minutes and we knew this is where we wanted to be. It was clean and the people were so incredibly friendly. We were excited to see how nice everything was, but we still needed to meet the doctor. When we finally did meet her, it became a no-brainer. Her name is Dr. Amy Filbrun and she was so much more compassionate and understanding than any doctor in Detroit. We never got the sense that she was telling us what to do, but merely making suggestions and letting us make the final decision...as it should be. I remember her sitting down with us and LISTENING to us. She would NOT leave the room until she was certain that all of our questions had been answered. We knew this was the place to be and we've been there ever since.
We originally planned on having a third child, but after Kennedy, everything seemed to be up in the air. She demanded so much of our time and attention and that was hard for all of us, including and especially Cheyenne. Then in the fall of 2007, we found out that Holly was pregnant again. Kennedy was now 5 years old and we had finally fallen into a routine, and here comes the news of our new adventure. However, there was a little problem. Cystic Fibrosis is a genetic disease, which in a nutshell meant that our third child had a 1 in 4 chance of having Cystic Fibrosis. (I could make Mr. Teets happy and draw you a punnett square with dominant and recessive genes, but I hope you'll just take my word for it.) This scared the hell out of me. We knew that there was this risk, but we didn't care. We wanted a third child and if the third one had CF, we would live with it and laugh even more. More than anything I wanted a child without CF, but I would be lying if I didn't say that I really wanted a boy. I mean...I really really wanted a boy! Before Kennedy was born, I really didn't care...but I knew this would likely be our last child so I really wanted a son.
This pregnancy was a little more difficult for Holly than the first two. She ended up getting gestational diabetes, which forced her to really watch what she ate. But in typical Holly fashion, she stepped up to the challenge and got herself through the nine months without much of a problem. It was also a unique feeling for the both of us since we knew there was a 25% chance of the newborn having CF, so mixed in with the excitement was a lot of nervousness and even some fear.
Then the day finally came on April 19th of 2008. The good thing about this time was that I had already known what to expect from the whole "child birth" thing so I wouldn't have to be surprised by the sights and sounds I was about to witness. "A beautiful thing" my ass! As the labor got further and further along, I was brimming with anticipation until the moment finally came. A head! Shoulders! Belly! And....A PENIS!!!! BAM, Felax got himself a boy! Now, I hear people say all the time how beautiful babies are and all of that nonsense, but I'll be the first to admit that he was one ugly baby! Yeah yeah, I can hear many of you now..."How could you say such a thing about your only boy? You're an awful person!" And to that I say this...Nope, I'm an honest person. He honestly looked like a dinosaur, but more on that later. (Sidenote: As ugly as he was then, he is now one of the most beautiful little boys I've ever laid my eyes on...and you KNOW I'm being honest:)
My immense joy, however, was quickly subdued when the nurses seemed to become concerned with something almost immediately. I asked them what the problem was, and they just kind of said that he seemed to be having issues with his breathing. I tried to remain positive, but my thoughts immediately went to CF. We had no way of knowing if he had CF at the time but they nearly immediately drew blood to send it out for DNA testing for CF. They took Nolan to the PICU almost right away and started him on oxygen. We were not able to see him for quite some time and it was killing us. When the nurses finally took Holly and I back to see him, it was once again one of the hardest things I ever went through. He was under a protective bubble and he had all sorts of tubes and wires connected to him, but what bothered me the most is what one nurse in particular had to say. It was the FIRST TIME Holly got to see Nolan since the birth, and she just immediately started pointing out this laundry list of things that seemed to be wrong with him. Long fingers and toes...ears too low on his head....sunken chin....and on and on she went. Before she was able to finish, I left the room in search of something to break. I found my way into a vacant birthing suite and started punching whatever could handle a punch. Fortunately, one of the nursed found me almost immediately and came in and calmed me down. I don't remember the conversation, but I do remember saying over and over, "Not again...why do we have to go through this again."
After a few days, Nolan left the PICU and he got to come home shortly after. Things seemed to be OK as far as his breathing, but something still just didn't seem quite right. Like I said before, he looked like a dinosaur. His hands were so long that the tips of his fingers were almost touching his elbows when he was curled up and we started to notice some of the things that the nurse pointed out. More than anything, we noticed that the shape of his head didn't seem quite right. Holly repeatedly pointed out that she expected him to have an enormous head like his dad, but that just wasn't quite it. His head seemed to be elongated and fairly narrow, but I wasn't sure if it was just the "conehead" thing that all newborns seem to have. Then one time during a doctor visit to Dr. Dev, we were thrown into an absolute roller coaster. First of all, Nolan does NOT have CF. Elation! However, we think he has a condition known as Craniosynostosis, which is basically a malformation of the skull that most of the time needs corrective surgery. I still remember Dr. Dev making a comment to us about how much he wished that things would have turned out perfectly with Nolan for us since Kennedy had been so difficult, but it just wasn't in the cards.
Holly did her research and she ended up choosing a surgeon at Children's Hospital in Detroit. We were both hesitant to go back there, but the neurosurgery department there came highly recommended and we went with it. Nolan's surgery was a major one, and they did it when he was only 3 months old. They made a zig zag incision from one ear, all the way across the top of his head to the other ear. They then peeled his scalp forward and backward, exposing his entire skull. At that point, they had to carefully cut out and remove a long strip of his skull from front to back. His plates had fused together too soon and were no longer pliable, so they had to remove that chunk of his skull in order to begin the reshaping process. When he came out of surgery, he was all wrapped up and his head looked sooooo different. It was round and not elongated like before. Even though a lot of it was because he was all puffed up from the surgery, he honestly looked like a new kid. I remember seeing the incision for the first time in a picture Holly sent me and I was stunned. Here was my little man with an enormous incision and his scalp being held together by a bunch of staples...and he was just sitting there drinking milk like nothing was going on.
The good news was that Nolan's surgery was a success and he would recover just fine, and the zig zag scar was just a little added bonus. Chicks dig scars, you know. The bad news was that this surgery would almost certainly hold back his progress for a few weeks, but it was well worth it our minds. We had gotten the great news that he didn't have CF, the bad news that he needed surgery, and then the good news that the surgery was a success. Unfortunately, a couple months later, that pattern would continue.
We noticed Nolan was not reaching the milestones that he was supposed to reach. Even simple things like rolling over were not even close to possible for this little guy who seemed to struggle with almost every little task that a baby should be able to accomplish. At first we attributed it to the surgery holding him back, but then it got to a point where we knew something else wasn't quite right. We took him back to the doctors and they ran a battery of tests and Nolan was shortly thereafter diagnosed with Cerebal Palsy. I couldn't believe it, even though I think Holly knew it was coming. Needless to say I was devastated, even though it was for very selfish reasons. As a guy, you always have dreams of playing catch with your son and coaching him in little league, and I was slowly seeing those dreams washed away by this diagnosis.
So what exactly is the definition of cerebral palsy? Cerebral palsy is a term used to describe a group of chronic conditions affecting body movements and muscle coordination. It is caused by damage to one or more specific areas of the brain, usually occurring during fetal development or infancy. It also can occur before, during or shortly following birth. In other words, there are all sorts of different severities and cases of CP, and we had no way of knowing how bad Nolan's case was. All I knew was that Holly and I were hell bent on doing everything we could to make him as strong as possible. Yeah...I know I say "Holly and I", but once again I have to be completely honest and let you know that Holly is pretty much a miracle worker when it comes to things like this. She did everything. She scheduled physical therapy, she scheduled occupatioinal therapy, and she scheduled every other appointment, test, or consultation that we had and she made sure it happened. She made sure he was scheduled for a special pre-school in St. Clair. She made sure he had his walkers and his specially fitted wheel chair. During one stretch of about a year or a year and a half, Nolan not only had school in the morning, but also had either physical or occupational therapy three or four times a week over in Chesterfield, which is 20 minutes from where we now live. Holly did it all...I was just along for the ride.
There were other bumps in the road as well. He was also diagnosed with something called Arnold-Chiari brain malformation and he had to have another brain surgery to correct the problem. He had strabismus in one of his eyes and had to have a surgery to correct that. Then one day he started having seizures and has also been diagnosed with epilepsy. I have to once again give Holly some insane amount of credit for how she handled this. During his first three or four seizures, I bawled like an 8th grade girl that got dumped by her boyfriend, but Holly didn't miss a beat. She was the one comforting Nolan while I was sobbing like a pansy ass. Nolan has had 8 or 9 seizures in all and will likely continue to have them, but he is medicated to help control them. Each of these things in and of themselves are life changing events for many people, but with Holly at the helm of this family, we don't miss a beat. (OK...I guess I'm bragging now a little bit, but the strength of this Felax 5 makes me smile.)
Nolan would gradually achieve his milestones because of all of the work Holly put in to make sure of it, but it just took him a LONG time to do so. We weren't sure when he would be able to walk, but at one point I was thinking I'd be happy if he would walk by the time he was 4 years old. That seemed like an achievable milestone with the right amount of work. But heres the thing about Holly and Nolan...they aren't normal. They don't do things half way...they do things 110%. Then a couple of months before this third birthday, the amazing happened in our living room. Nolan, who had been able to sort of stand up on his own for a couple months, decided he wanted to walk. And he did. As I type this, my eyes water and I get a lump in my throat thinking about it. He was still a long ways from being stable while walking, but that little shit just did it. Fortunately I had my phone right next to me and caught the moment on camera, and it was a moment I will never forget. I remember another huge milestone at the end of last year when Nolan, for the first time ever, walked out to the bus instead of being in his wheelchair and he got into a "big boy seat" instead of being strapped into his chair. All of these little moments mean so much more because he had to work so much harder for them and they are a testament to the will of a little boy who has had a lot thrown into his path.
So now here we are, 4 months from "Crazy Nolan's" 4th birthday, and he is further along than I could have ever imagined. There is a special bond that a dad and a son share, and his disability does nothing but make that bond stronger for Nolan and me. I may never have the pleasure of coaching him in little league, but there is nothing that says he can't be my first base coach or my score keeper. He may never score the game winning touchdown, but there is nothing that says that he can't be right next to me cheering on the guy that does. He still does everything that a totally healthy boy would do...he eats his body weight on a regular basis, he likes to wrestle, punch, and bash heads together, and he looks up to his daddy.
The funny thing is that our job as parents is to teach our kids and give them the strength to be successful in their lives, but in this case, Crazy Nolan has been the one giving all of us strength. He is strong, he is resilient...and he makes our family complete.
Until next time...
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