I'm Going There: Young-Onset Parkinson's Disease

I started this blog in January, with the goal of writing about my life, which has a lot of good and some bad. While I have written extensively about my daughter and her medical issues, my son and parenting challenges I face, training for my half marathons and triathlon, cooking, and a host of various other topics, I have yet to write about my husband. And this is a big one.

You see, my husband has Young-Onset Parkinson's Disease (YOPD, or PD). He was officially diagnosed a few months before A was born, at the age of 35, although he was having symptoms before that.

I am not sure why I haven't written about J having PD. It's probably due to the fact that I hate it, it upsets me to no end, and I like to pretend it isn't happening to him. To us. To write about it is like opening a can of worms for me. But I think that now, eight months after starting this blog, I am ready. I will start slowly with this post....I will write about how he came to be diagnosed with a disease that usually hits people in old age.

It all started (for all intents and purposes) in 2004. I was pregnant with D, our firstborn. I went on the computer one day to get online, and was about to google something when I noticed that J had just done a search for "shaking finger" or something like that. I thought that was an odd thing to google, so I asked him what was up. He told me that his finger had been shaking recently, and he didn't know why. I urged him to go to his doctor to get it checked out. Of course, being a typical guy, J didn't go right then, and wanted to wait until his scheduled physical in the fall. I kept telling him to get it checked out sooner, but he didn't listen to me. (Note: I am not making judgements. It took me years to finally get my headaches checked out by a doctor; now I am diagnosed with migraines. I get the not-wanting-to-know thing).

Anyhow, in the fall of that year, J finally went for his physical. He came home in a good mood, saying that his doctor told him that the tremor in his finger was due to stress and was no big deal. I flipped out; I knew it wasn't stress-related. I am (in my past life) a Marriage and Family Therapist, and I know the physical symptoms of stress and anxiety. People may get a raised heartrate, sweaty palms, and decreased appetite, but a shaking finger is not a stress symptom. I urged him to go to a neurologist. He didn't want to go; he trusted his primary physician. Finally I told him that if he didn't go, I was going to call his mother and tell her what was going on. This scared him into action--he knew his mother would freak out!--and he went back to his primary care physician to get a referral for a neurologist.

Finally J saw the neurologist. As I had suspected, the shaking finger WASN'T stress related. The doctor said it could be caused by many things: Parkinson's Disease, a stroke, a brain tumor, or other diseases. I remember the next morning getting in the shower. J had already left for work, and our newborn, D, was in his bouncy seat next to the shower stall. I was freaking out, thinking about my husband possibly having a brain tumor, and here we were a young married couple with a newborn son. I sobbed and sobbed. I prayed that day for it to be PD, because the idea of some of the other possible causes were too frightening to imagine.

J soon began a series of tests to find out the cause of the tremor. Blood work, urine samples, MRIs...you name it, he had it. The thing with PD is that there is no test for it. Unlike cancer, you can't take a biopsy to diagnose it. Unlike diabetes, you can't take a blood sample. With PD you have to rule everything else out, and what you're left with is Parkinson's. A year or so later, his neurologist was convinced that he had PD. Our daughter, A, was born in June of that year, and if you're a faithful reader of this blog you know what a roller coaster we've been on with HER!

Since then the tremor in his finger has gotten worse. His whole right arm shakes now, and he is just starting to feel a bit of tremor in his left hand. His speech and gait are affected a bit. He is on lots of medications, which seem to help a bit.

I'm sure at some other point I will write more about this...my anger, my concerns, my fear....but I feel better for getting this written down now. I am hopeful that there will be a cure one day; I just hope it's in time to help my wonderful husband.

My Kids: The Tortoise and The Hare

On one of the kids stations my kids watch (PBS Sprouts? Noggin?) they have been playing the story of the Tortoise and the Hare every day. For those of you who are unfamiliar with the story, it's one of Aesop's fables, and you can read the synopsis on the link I provided. The moral of the story is "slow and steady wins the race".

Hearing this story on television every day really got me to think about my kids. In a way, my son, D, is the Hare. Quick to learn, smart as a whip, he excels academically and has met every developmental milestone early or on time. I wouldn't call him lazy, like the Hare in the fable, but he doesn't usually have to work hard at anything. Of course, he just started first grade today, so time will tell if and when something becomes challenging that he really has to work at. But so far, he's quick. Unlike the Hare in the fable, he doesn't lose the race; rather, he wins. Or at least finishes.

My daughter, A, is the Tortoise. She is slow to meet almost every single developmental milestone (sat up on her own at age 15 months, walked independently at age 3 1/2, is still not potty trained at age 4, just to name a few examples.) However, just like the Tortoise in the fable, she keeps plugging away. She is stubborn and persistent, and wants to do things like "typical" kids do. She works her tush off in therapies, making her a favorite among her therapists. She is up for challenges all the time, which is why I felt comfortable signing her up for a race only 6 weeks after she began to walk independently. She is on her own timeline, but she gets there eventually. Last week I wrote about my concerns about her not writing yet; but given her tenacity, I know she will. Eventually.

I need to take a lesson from the Tortoise and the Hare fable. It doesn't matter if you are quick to learn, like the Hare, or slowly plod along, like the Tortoise. What matters is getting to the finish line. Heck, I have learned that in my own life: I am a slow runner, and will never finish in a fast time during my races, but I am proud of myself as long as I train properly and make it to the finish line. There is no "right" way to develop in life. Yes, there is a preferable way (and I often wish she would meet her milestones quicker, dammit!) but the preferable way is not the "right" way. She meets her goals on her own timeline. The point is that she gets there. Plodding along like the Tortoise she is.

A Melancholy Mood

I'm in a melancholy sort of mood. Not sad, just a bit nostalgic,

D starts 1st grade in two days. First grade! I just can't believe it. It seems like just yesterday when I was at his preschool graduation, sobbing about what a big boy he was getting to be. Kindergarten seemed so OLD to me. And now he is going into first grade. Amazing.

And A is going into her last year of preschool! I still have a few more weeks of vacation with her before her school starts, but she will be going three days a week for the first time. Next year she will go to a pre-kindergarten program offered through our school district (we're holding her back a year for a million obvious reasons) and then the year after SHE will be in kindergarten too.

I've written before about how sad I get as the kids get older. The passing of time is so fast. I do try to savor each moment, but it's hard....I easily get caught up in the day-to-day stuff and forget to be IN THE MOMENT. This summer has been wonderful. I feel like I did get lots of quality time with the kids. We did some "big" stuff (took a trip to Colorado to visit my dad and step-mother; D was in camp for a month) but much of what I loved was the "small" stuff (trips to the beach, going to Sea World, getting frozen yogurt, running errands). I purposefully didn't schedule a lot of playdates, even though they would have filled up some time. Although we saw friends here and there, much of the summer was just D, A and myself. I loved spending time together, even if it was just a routine trip to Target.

In two days D will be gone every day until 1:45. The next few weeks will be quieter. When A starts school in 3 weeks, things will amp up quite a bit (see here for last year's schedule; this year will only be busier and more hectic). Not only will she be in school as well (and she will be in the afternoon session) but all of her school-based therapies will kick in again, in addition to the therapies she also has as Children's Hospital. We will be busy, busy, busy, so I'm glad we had a slow-paced summer.

Yes, I'm melancholy. But in a good way. I love my kids, and want to soak it all up.

A Few Steps Back: OT Eval

Although I have been feeling so good about A's progress these days (walking! talking! no feeding tube! no breathing tube!) I have become more and more concerned about her writing skills. Although she is now four years old, she is not writing. Hardly at all. And I'm not just complaining that she isn't writing her letters; I know a lot of children her age can't. What worries me is she can't draw even simple shapes, like a circle, nor can she do simple line tasks like follow a very easy maze. I know I compare her unfairly to her older brother, D, who is a boy-genius (was reading at age three, was able to write legibly at age four) but I also have seen what other children her age are able to write when I visit her preschool class. I have no doubt she is delayed in this area. And with A entering kindergarten in two years (and a pre-K program in one year) I wanted to see what we could do to help her now.

When I took her last month for her four year check up, I asked the pediatrician for a referral for an occupational therapy (OT) evaluation. He told me that most insurance companies don't pay for OT for writing skills (they don't consider it necessary) but that they WOULD pay for an evaluation. I figured I'd get the medically-based evaluation, at Children's Hospital, and if they thought she really needed services I would ask her to be evaluated for OT through the school district (where she already receives speech therapy, physical therapy, adapted physical education, and will soon start deaf/hard-of-hearing therapy).

I should backtrack and disclose that A WAS in OT before. She had OT since her days in the NICU, and was discharged last fall, at the age of three. However, her OT goals were soley focused on feeding. Per her OT therapist, A's fine motor skills were great. And they are! She has always been able to hold a pencil correctly (even at the age of two!), build a tower of blocks, and string beads. I'm not saying that she's perfect; surely there are fine motor skills that can be improved upon. But they have always been good. A's OT issue was eating, and once she was eating and drinking enough that we were able to stop using her feeding tube, we were discharged.

So the thought of going BACK to OT is disheartening, but we went to the evaluation nonetheless. And I'm glad we did. A did great on most of the fine motor tasks (except for being able to use scissors), but had a hard time doing the writing tasks asked of her (ie drawing shapes, tracing lines, etc). She did surprise me by being able to correctly fill in the eyes, nose, mouth, hands and feet on a stick figure, but other than that her writing/drawing skills were not good. Not good at all.

The therapist strongly feels that her inability to write is largely based on her vision issues. A has coloboma in both eyes; that is, she has a small hole on each of her optic nerves limiting vision. We don't know for sure, since A isn't able to tell us yet, but her opthamologist thinks that A is legally blind in her left eye (she probably only sees shapes and light in that eye) and while her right eye is much better, she may have fields of vision missing there. A wears non-prescription glasses (no prescription because she is not near- or far-sighted) in order to protect her right eye. If something happened to it accidentally, she'd be virtually blind. With so much limited vision, A may not actually be SEEING what she needs to write or copy!

The OT still has to write up her report and submit it, but she told me she is going to recommend coming every other week for a few months "to give us some tools". I am considering this good news; surely if A was in terrible shape she's recommend coming in weekly for a longer period of time. The good news is that insurance may pay for it after all; A isn't able to button a button or do a few other dressing skills, and the OT said that insurance usually pays for OT if it includes self-help issues. So we'll see. If not, I'll pursue the school route.

In the meantime, the OT gave us some good tips to try. She told us to have her write at an easel, where she can see the shapes vertically in front of her (I tried this today and still nothing). She recommended playing games like "I Spy" where she has to really focus her vision. Having A color in coloring books, rather than on plain white paper, may help her color in a small area. Finally, things like lacing, tracing, and finger play games may be helpful.

I can only hope that we are intervening in time, and that A can overcome this latest challenge. She can recognize her shapes, letters and numbers, so I know she SEES things on the paper. It's just writing that is hard for her. I guess if worst comes to worst, and she is never able to write or draw, this is the best time for that; in this day and age, there are so many adapted technologies that she can "write" with (laptops, iPads, texting, etc) so it wouldn't be the end of the world. But of course, like all parents, I want her to be as typical as possible, and this means being able to write whatever is age-appropriate for her to do so.

AFC Half Marathon (2010) Race Recap!

Yesterday was the first of 3 races I signed up to do this year. It was the 33rd running of the AFC Half Marathon here in San Diego; it was my second time to do it. My first time was in 1999, and my time was *almost* 3:05. My goal was to not only beat that time and set a PR (personal record) but to also come in under 3 hours. I realize that doing a half marathon, which is 13.1 miles, in under 3 hours is easily achievable to a lot of people. I have lots of friends who run that distance anywhere from the 1.5 hour range to 2.5 hours. However, as I have talked about before, I am slow. My pace is slow, I take walking breaks when I need it, and I am totally ok with that (although I secretly love to be faster).

I was very excited and nervous about this race. I've been training since January, and felt ready. My dad and step-mother flew out to race with me (my step-mother did the half marathon, and my dad did the adjunctive 5K). They were picking me up at 4:45 in the morning, so I set my alarm for 4:15 and went to bed very early. However, my anxiety was so high that I tossed and turned most of the night, getting little sleep. I was up way before my alarm. I got dressed, triple checked that I had my gear (iPod, sunglasses, hat, Gatorade, and of course my race bib and timing chip). I ate a Clif Bar, was picked up, and we headed down to Balboa Park where we were instructed to park; shuttles would take all the half marathoners to the start of the race at Cabrillo National Monument in Point Loma.

When we finally arrived in Point Loma, it was still pretty dark. Thousands of racers milled around with a lot of pre-race excitement buzzing around. We quickly got in line for the porta-potty...although there were lots of them, each stall had a line with at least a dozen people. Ironically enough, we got in line directly in back of A's physical therapist, who was also running! And while we were in line another friend of mine saw me and came over for a hug. It was her first half marathon, and it was good to see her to wish her luck. Finally it was my turn for the potty and I went. Afterwards, I searched for and found my friend who is training me for the half marathons and the triathlons. I had a few more friends running that I would have loved to have run into, but seeing how there were over 8000 runners, seeing 3 was actually pretty good!

Finally the race started. We started toward the back of the pack, and walked our way toward the starting line. Once I hit the start line, I started running. My step-mother and I had agreed to start together but to run our own race at our own pace. She quickly was ahead of me (a rock star!) and I turned on my iPod to listen to tunes. Adam Lambert kicked me off on a good pace. The weather was perfect; a marine layer covered the sun during the entire race, and with the combination of the bay breeze blowing, I stayed cool during my entire run.

The first several miles were wonderful. The excitement of the runners was palpable, and I soon settled into my pace. The residents of Point Loma are amazing; several families were seated on lawn chairs cheering on the runners. I loved that! After a slight incline in the beginning, the road began a nice downhill for several miles. I ran pretty much non-stop (save for one quick walk break to drink some of the Gatorade I had with me) for the first 6 miles of so.

Some of you might be wondering why I brought Gatorade with me. Yes, water was provided in many aid stations on the course, and they also offered another sports drink. But I subscribe to the theory not to do anything new on race day. When I do long runs, I always bring Gatorade, not water with me. And although they did offer another sports drink, I was unfamiliar with it and I didn't want to take a chance with it not agreeing with my tummy. So, I brought one bottle of Gatorade in my running belt, and drank this to hydrate (supplemented with water from the aid stations when I needed it).

After about 6 miles, when we started to run by the airport and around Harbor Island, I started to lose a bit of steam. I decided to eat one of the Clif Bars I had brought with me to give me more energy. At mile 7 I started getting sciatic nerve pain in my leg (which happens periodically when I run). I took a Napraxen (which is what my doctor gives me for sciatic nerve pain) and hoped it would kick in soon. Taking the pill made me feel a bit nauseous, but not terribly so. Still at mile 8 I began to hit a bit of a wall, and began doing more walking than I had planned. I took my one and only bathroom break. I knew I was not feeling great when even the music on my iPod, and the podcasts I had downloaded, started to irritate me and I had to turn my iPod off for a while! I always run with music, but I was suddenly not in such a great space.

At around mile 9, I started to feel better, enough so to turn my music back on. However, I had bonked enough that from miles 9-13.1 I did a lot more walking than I wanted to. I'd run for a while, then my legs would start to hurt, so I'd walk for a bit, etc. I took in about 1/2 a packet of Gu for more energy, but it tasted too sickly sweet for me to finish the packet. The aid station manned by OMBAC cheered me up; they had a shower set up with pipes that was fun to run through. When I saw the mile marker for mile 11, I was so happy! I knew I was doing ok on time, enough so that if need be I could walk the next 2 miles and still make my goal. Of course, I didn't walk the next 2 miles, I did my run/walk combination, but it was nice to realize that in a worst-case scenario I would have most likely made my goal anyway.

Miles 11.5-12.5 are notoriously hard in this race. It is a mile uphill. Not terribly steep, a pretty gradual incline, but nonstop for about a mile. Everyone around me (all the back-of-the-packers!) were walking it. I ran/walked, and was thrilled when it was finally over and the course turned toward the finish line in Balboa Park. On the hill the Front Runners Club gave out ice-cold washclothes---boy did those feel good!

When I finally saw the finish line I ecstatic. People were lining both sides, but I easily picked out my family. J was there with D on his shoulders and A in a stroller. I saw D's beautiful face above the crowd, cheering me on. I also saw my dad, and high-fived him on the way in. My step-mother, who had come in several minutes before, was there and ran with me to the finish line. I had done it---not only finished but met both my goals. My time was just under 2:55. I not only did a sub-3 half marathon, but had broken my previous time by a little over 10 minutes. I had set a PR.

After the race, I convened with the rest of my family. D told me that I was the best racer out there, and that he wished he could make me a trophy as tall as I am. This set me to tears; I really want to be a good example for my kids, and I hope they remember me training and racing.

I am very proud of myself. Not just for meeting my goals, but for the way I did it. I really trained! When I did the half marathon in 1999, I trained too, but not as well. Back then my longest run had been 10 miles, and I only did that once or twice. This time around, I did SEVERAL 10 milers, and even did a 12.8 and a 13.3. I had been training since January....doing lots of runs and more recently adding in the biking and swimming while training for my triathlon. Even if I HADN'T met my goals, I would have been disappointed but okay. I had put my time and paid my dues.

Now onto the Disneyland Half Marathon, which is in 3 weeks. I hope to PR again, but even if I don't it's ok. I need to figure out why I hit the wall so early; I don't always feel like that in my long runs, so it was odd. I am loving the experience, the training, and the feeling of being so fit and healthy.

On Being Vegetarian

I wasn't always a vegetarian.

Up until 8 1/2 years ago, I was an omnivore. I loved meat. Chicken, bacon, steak, lobster, shrimp....I ate most things except for lamb, veal and other animals that I deemed "too icky" to eat. I never really thought about what I ate....if it was on the menu, and it looked good, I'd order it.

I did know some vegetarians, and they intrigued me. My step-mother is a life-long vegetarian, and my ex-best-friend was too, among others. I remember years ago asking these people questions about vegetarianism. I was intrigued. What did they eat? What were their reasons for not eating meat? Did they miss it? The answers I got were as varied as the people answering. Some people gave up meat for ethical reasons, some because of health issues, some because they simply did not like the taste of meat. And of course, everyone's diets varied, as expected. I remember talking to one friend about being vegetarian. I clearly remember telling her that I could do it, but that I would miss tacos too much. She replied that I simply wasn't ready yet.

On March 5, 2002, I was ready. I decided to try it for one month. I figured that anything less than one month wouldn't really be giving it a fair shot, and anything more than one month may seem daunting. I had just turned 32, and was ready for something new. That day was the first day I went vegetarian. One month later, I renewed my commitment for another month...then another...then another....and soon I wasn't renewing anymore because it was already part of who I was. I have not had any meat---beef, chicken, pork, seafood, etc--since that day.

A few months into going vegetarian, I read the book Fast Food Nation. While it is a fascinating book all the way through, what really got me was the chapter on how they kill the cows and chickens in the slaughterhouse. It really grossed me out, and made me really sad for these poor animals. That totally sealed the deal for me. No more eating animals.

My reason for being vegetarian is strictly ethical. Sure, I enjoy the health benefit--my cholesterol is very low--but that is a side benefit. In fact, when I first became vegetarian over 8 years ago I GAINED weight! I was suddenly eating a lot more cheese products and junk food and my weight climbed up 20 pounds. I lost that immediately (thanks Weight Watchers!) and quickly learned healthier ways of eating.

At first I missed meat terribly, but now I don't miss it whatsoever. There are so many vegetarian recipes that keep me satisfied. I am always on the prowl for new cookbooks and love to buy them or check them out from the library. And so many traditional meat dishes can be made using soy substitutes (like Morningstar Farms, Boca or my new favorite, gardein). I still have tacos, veggie burgers, sausage and bacon, but it's all made with these fabulous and tasty soy-substitute products.

I am not a vegan (someone who eats no animal products whatsoever, like eggs, dairy or honey). I do eat a lot of dairy, and use eggs in my cooking. I have no interest in going vegan, although I do make a concerted effort to buy milk and eggs that come from free-range animals. One thing that is my biggest pet peeve is when people ask me if I eat fish. No, I don't eat fish; fish is an animal. I know there are people out there who call themselves vegetarians and still eat fish, but that is not correct. They are pescatarian (or as I heard once, veg-aquarium!).

I am not raising my kids to be vegetarian. If J was vegetarian as well, then of course it would be a different story. But I believe that what you eat is a personal choice. I made my choice for very specific reasons, and I want D and A to come to their own conclusions. Of course, in the house all they get are vegetarian dishes; I will not cook meat, so all the meals I make for them, whether it's breakfast, lunch or dinner, are meat-free. However, I will let them order a hamburger or chicken nuggets or whatever if we are out at a restaurant. If they come to me in a few years and want to be vegetarian, I will happily support their decision. If they choose to remain omnivores (and by the way they both love meat I think they will!) then that's ok with me too.

I love to cook and it is so fun and satisfying to make delicious and healthy food. Tonight I made homemade hot-and-sour soup and wontons. See? Being a vegetarian doesn't have to mean sacrifice! And I love having to think about what I eat before I put it in my mouth. Asking questions, reading labels, studying ingredients---it's important for me to know so I don't accidentally eat something with meat. Meat hides in things---many foods are cooked in chicken broth, for example--so I need to be vigilant. I'm glad I've made this choice. It's a lifestyle that I will always have. For me, there is no going back.

No Need for Fear

Today was D-Day.

D, as in Doctor. Our ENT (ear, nose and throat) doctor to be exact. It has been 3 1/2 weeks since A had her trach removed, and this was her first post-op appointment.

I was scared, to say the least.

You see, even though A now doesn't have a trach, I still had some concerns. Actually, one big concern. A still has a stridor, which means her breathing can get loud. Not all the time; sometimes she's a silent breather, as most people are, and sometimes the stridor is a bit loud. But sometimes, like when she is walking fast or doing some other sort of physical activity, her breathing gets really, really loud, as if she is gasping for air. However, I hadn't been too worried....her oxygen levels were 100%, she never turned blue or any color other than her beautiful natural pink coloring, and she never even appeared to be in respiratory distress. If I had ever been even the tiniest bit worried, I would have called the doctor right away.

Trust me, I know respiratory distress. In the months before she got her trachestomy (she had it placed at 4 months old) not only was her stridor really loud, but she would arch her back and neck gasping for air. A few times in the NICU, I even watched her turn blue. So I know the signs of a child in respiratory distress, and A clearly hasn't been, although she at times sounds just terrible.

So it was with great trepidation that we returned to the ENT today. I was scared that, given her stridor, he would want to put the trach back in. And now that I've had a taste of a trach-free life (for example, I am now able to leave A with friends or in a daycare setting, and she took her first trip to the beach last week) I don't want to go back. Of course, if A needed to have the trach put back in, it would be for her health and of course I would do it. But I didn't want to.

Luckily, the doctor couldn't have been more pleased. I told him about the stridor, and he said she would always have it; because she has a paralyzed vocal cord the air going around it will always make a loud sound. Hopefully once he stitches up the stoma in the spring the sound will be decreased (because she still has a hole in her neck, there is still air coming out, which makes a sound). And perhaps as she grows bigger, her airway will get even larger making the sound less. But perhaps not. And as much as I don't want my daughter to be a loud breather, or to make gasping sounds, I'd much prefer this to a trach. I am grateful, and will not let the volume of her breathing bother me or her.

Now I get to finally get rid of all her trach supplies. The machinery needs to be picked up from the company we were renting from, and the numerous supplies we have will be be donated to someone whose insurance doesn't pay for a lot of supplies. The med cart can be removed from her room (it was storing tons of supplies like extra trachs, trach ties, saline, etc). Best of all, I can finally believe that the trach is out for good. This appointment confirmed it for us!

Fit and Forty! Race Days Approach!

I've talked before about my upcoming races, and now they are almost here! I am doing the AFC Half Marathon next Sunday, and the Disneyland Half Marathon a few weeks after that, over Labor Day weekend. Additionally, my first ever triathon (Mission Bay Triathlon) is first weekend of October. They are all sneaking up on me!

My training has been going really, really well. In fact, during the last 40 days I have worked out 39 days! I did miss one day; I woke up early that morning to swim and was so exhausted that I went right back to bed. I realize that I have to listen to my body, and if it needs rest, I need to rest. The next day, however, I did two workouts (ran and swam) so really I have done 40 workouts in the past 40 days. It has become a habit for me; the girl who used to love to sleep in as late as possible is now getting up at 5:45 every day to get the workout in!

I have been logging lots of miles running, and had some great long runs. Four weeks ago I ran 12.8 miles, and two weeks ago I ran 13.3 miles. Since the half marathons are 13.1 miles each, I totally feel prepared for them. In biking news, last week I did my longest ride yet: 18 miles. I am riding on a lot of hills, which makes it both hard and easy (uphill is grueling for me, while I love the speed and ease of the downhill!) Finally, I have been doing much better on my swims. I have worked up do doing 1/4 mile in the pool nonstop, then taking a rest, then doing another 1/4 mile nonstop, taking another rest, then doing 1/8 mile nonstop and then ending my swim. I found out that the triathlon is only 1/4 mile swim, not 1/2 mile as I had previously thought, so I am in good shape for that. I just need to get myself a triathlon wetsuit, as the water will be cold!

I have been struggling with the idea of seeing myself as an athlete. I have never been an athletic person. I was always the kid chosen last for teams, and I never did any sports as a child, either individual or team. My parents never offered athletics to me, and I didn't ask to join. I didn't WANT to join! However, as I grew older I got more and more interesting in working out. I joined a gym during high school and loved lifting weights and being on the Stair Master. I worked out on and off during college and beyond....mainly doing workouts at a gym. In 1998, at the age of 28 I began to run. I began by doing dozens and dozens of 5K races, with a smattering of 8K and 10Ks. I did my first half marathon in 1999 (the same AFC I'm doing next weekend) and in 2003 completed my first and only full marathon (San Diego Rock n Roll). Now, years later at age 40, that I feel like I've finally become the athlete I always wanted to be.

And yet...I am slow. I am a slow runner, a slow biker, and a slow swimmer. I do speedwork, but I think I am destined to always be slow. Which is fine with me, except that I struggle with the idea of a slow person being an athlete. I recently saw someone (on Facebook? Twitter? Another blog?) saying that they were a jogger about to do their first half marathon. Someone responded that if they are doing 13.1 miles, they are not a jogger, they are a runner. I need to make that my mantra too. It doesn't matter how slow I am, or how many people (or snails!) pass me by. I am doing what to me (and for a lot of people) is a challenge. I am fit, strong, and becoming more heart-healthy and bone-healthy every day. These (in addition to the other reasons I have listed) are motivating for me to keep on going.

I hope to have a great report after the AFC Half Marathon next Sunday! If all goes well, as it should, I plan on signing up for more halfs in 2011!

My Beach Bunny Baby

Today A and I went to the beach.

Yeah, I know I wrote that kind of casually, but really, that sentence is something I have wanted to write for 4 years. You see, although we live only 15 miles or so from the beach, I have never been able to take my daughter there. With a tracheostomy, things like sand and water don't mix. Sand can easily get in the trach, and therefore down her airway. And water....well, it is obvious what being in water would do. So even though we live in San Diego, in warm weather and very close to the beach, A had never:

Been to the beach
Swam in a swimming pool
Gone on a water slide
Played at a splash park
Bathed with more than an inch or so of water in the bathtub
Frolicked in sprinklers
Had a water pistol fight

Heck, until this past year she had never even been in a sandbox! We finally let her go at school (she wanted to so badly!) and always made sure she had a heat moisture exchanger (or HME) over the trach to protect it from sand entering. Of course, her hearing aids are a factor as well, but those can easily be taken out, or have a protective cover put on (not for total water immersion, of course, but for things like water gun fights).

When she had her trach removed 2 weeks ago, the first thing I thought of is that she would be able to finally go swimming. I thought wrong. Her stoma is still open, and won't be surgically closed for 6-12 months. Our ENT told us to treat her as if she still had the trach in, at least until he did the closing surgery. So even though so much as changed for us, she still has some limitations.

My two sisters and their families had gotten A some swimsuits and a towel as a "decannulation" gift, which was such an incredibly sweet gesture. At first I thought that we'd have to wait until next spring or summer, after the next surgery, to use it. However, after much deliberation, I thought it would be ok to take her to the beach today. I put a piece of gauze over the stoma, and taped it (both horizontally and vertically) so the airway was effectively closed off and protected. I got her in her swim diaper (her first time wearing one!) and a swimsuit (again, her first time wearing one!) and to the beach we went! It was just the two of us, as J was at work and D was at camp.

A LOVED the beach. Absolutely loved it. The look on her face while walking onto the sand was priceless; it was as if she had been in the Midwest her whole life and was seeing the ocean for the first time. In actuality, she WAS seeing the ocean for the first time, at least up close! We set up our blanket, and then headed to the water. Even though I couldn't take her IN the water, I figured she could at least get her feet wet! The water was freezing (as usual) and I think the combination of cold water and the vastness of the ocean scared her, because within a few minutes she wanted to go back to the blanket, and wouldn't go back to the water's edge no matter how many times I suggested it.

We stayed only about an hour, which was plenty of time for my fair-skinned beach bunny. She played with the bucket and shovel I brought; we made sand castles; we hunted for shells around our blanket; we ate lunch; and we relaxed and sunbathed a bit. The entire way home she kept talking about how she wanted to go to the beach...again.

This will be the first of many beach trips for my amazing daughter. I can't wait to take her again. Next year (God willing) her stoma will be closed, and we can take swim lessons, go to the water park, and maybe, if she allows it, I can take her in the beautiful Pacific.

From the Professional's Point of View

We have had a gazillion therapists, specialists and doctors work with A over the past 4 years. In addition to the many neonatologists, surgeons, nurses and therapists that worked with A during the 12 weeks she was in the NICU, we have had:

Neurology (discharged)
Genetics
Audiology
Opthomology
Cardiology
Renal (discharged)
ENT
Pulmonology (discharged)
GI
Plastic Surgery
General Surgery
Nutrition (soon to be discharged)
Developmental Assessment (discharged)
Early Intervention Team (aged out; this included a teacher and visits from a physical therapist, speech therapist, occupational therapist, vision therapist, deaf/hard-of-hearing therapist, social worker and nurse)
Speech Therapy (both through our insurance and through the school district)
Occupational Therapy (discharged)
Physical Therapy (both through our insurance and through the school district)
Adapted Physical Education
Deaf/Hard-of-Hearing Therapy (to start this fall)
Regular Pediatrician
Dentist

Whew! That's a lot of specialists! This doesn't even include the nurses that Children's Hospital and the county would send to our home soon after the NICU discharge, nor our fabulous nurses we had to help take care of her.

I am so consumed with my life as mother to two children, including one with special medical needs, that I rarely think about the professionals in our life. I rarely think about how THEY feel treating my daughter. I wrote about it a little when her physical therapist expressed how pleased she was at A's motivation. I have also heard from other therapists that their work is most rewarding when they see the kids make progress: A progressing from rolling to crawling to walking was amazing for our physical therapists; A progressing from signing to saying a few words to speaking in full sentences puts a smile on our speech therapists' faces.

Today I got a glimpse into how it is for her doctors to treat her. We had a follow-up appointment with the surgeon who removed her g-tube (the incision/scar looks great, by the way). She was in the room when the ENT removed her trach (again, the trach removal was a total surprise for us). So I asked her....what did the ENT say when he was looking at the trach? She said that he and his team looked, and just said "let's take it out". But she also said that he (the ENT) was very excited. In fact, they had a little fight about who was going to talk to J and I first in the consultation room post-op. He wanted to go first to tell us that he had taken the trach out; she wanted to go first "because otherwise it would steal my thunder about taking the feeding tube out". Both were excited to tell us! I really think that taking A's tubes out made their day!

The surgeon also told me that it was great for her to take the feeding tube out. She sees so many babies with g-tubes, and it is nice for her to be able to tell parents that she just removed one from a 4 year old; it gives the parents hope that their baby's tubes will someday come out, too. I know the feeling of seeing someone who recently got their feeding or breathing tubes removed, and the sense of hope it instills.

It made me realize just how much these doctors and therapists want the kids to become healthy. The therapists WANT their patients to talk, walk, eat, etc. The doctors WANT their patients to have their feeding and breathing tubes removed, to pass audiology tests, to not need as severe corrective lenses, or whatever the case may be. I now realize that it makes their day to have a success story.

I am so glad that A is, and will continue to become, that success story. I hope that she is an inspiration to others going through similar issues.