CF Checkups

Don't panic! This is just a test.

 For those of you who don't know, my son has cystic fibrosis. We drive two hours every three months to the CF clinic where they check his growth, have a check up, and take a sputum culture (commonly known to the rest of us as throat culture). The throat culture is done to identify the bad bacteria that are currently growing in Toe's lungs, so that if he suffers from an exacerbation (a flare of of said bad bacteria), the doctors will know the most effective antibiotics to prescribe for the specific baddies in Toe's lungs.

During the clinic, we meet with our nurse (the master-coordinator who is the point person for every child with CF in the clinic. He answers our questions or directs us to those who do. He is a superhero and we worship the ground he walks on), one of the five-six pulminologists who deal with CF (We like them all. We mostly see Dr. Link, a phenomenal doctor who really listens and gives you time to process information and form questions), our dietician (who has helped us struggle through Toe's early cow-milk protein allergy and has been the one to push Toe's weight gain in an effort to help Toe's lungs develop properly), and our social worker (also amazing!). They set up the meeting for fifteen minutes, but the process usually takes about two hours on a regular day. We are given ample time to address any concerns that have come up in the interim and have our questions answered.

We're on a pretty regular schedule. Check up every three months (this will continue for his entire life) that includes a throat culture, blood draw once a year to check the vitamins, sodium, and other goodies in his blood,  and a chest X ray once a year.

At five and a half, Toe is ready for a new assessment: the lung function test. As this is new to us, I am not as up to speed on what we're doing here, but here is what happened. First Toe had to be decked out in haz-mat gear. He was then given nose clips. This is to ensure that during the test, Toe is only breathing through his mouth and into the machine.

Toe gets nose clips

"Turn so your mom can take a picture!"

 Next, he was taught how to properly breathe into the device that would measure his lung function. He watched the monitors (behind them in the photo) and would take 4-5 normal breaths and then a huge breath in to blow out the image of candles on the monitor (which much have been attached to the machine, because they responded to his breath). For a first time, he did really well, although he needs to work on a long out-breath to completely empty his lungs rather than one forceful huff.

Kim was fantastic. She made the whole process playful and fun.

We were then given reminders about how to do PEP and huff-cough technique as well.

Outcomes from this particular visit:

• We are still addressing the dry cough Toe has had since May. Since he caught a regular cold Friday and still has that cough, it was difficult to assess whether the two week course of antibiotics he just finished helped to eradicate the other. We will have to follow up on this. In the meantime, Toe continues to take Flovent, an anti-inflammatory, in case he has asthma (Apparently there is a kind of asthma that just has a cough, but does not involve wheezing. The things you learn...).
• Toe's height:weight ratio put him in the 66th percentile for children his age. This is HUGE. To have his lungs develop properly, they like to have him above the 50th percentile. We have clawed our way up from the 7th percentile two years ago.
• They want to have us change from the percussive therapy (also known as "clapping." We call it "Whack-a-Toe") to using a vest or PEP. This is an entirely new protocol to us that involves very specific and focused breathing through a series of exercises. I'm a little daunted, but we will figure it out. All of these types of treatments help to move the mucus in Toe's lungs after breathing treatments aimed at loosening said mucus. Loosen it up, move it out. We do this 2-3 times a day, every day.
• It was recommended we raise the head of his bed 10-15 degrees to help with his night coughing which we believe is due to acid reflux. He is already taking high doses of omeprazole for his CF (similar to Prevacid). We tried this and  he did not cough last night. Huzzah.

Also, J got a flu shot yesterday. Toe will get his flu shot as soon as the pediatrician gets in the vaccine.

Long day. We celebrated with dinner out. 

 Here are some photos from the drive home.

Art?

 At the local hot rod show a few weeks ago, we came across this signpost. Yes, it is gum. All of it. The black stuff, the stuff that looks like rubber bands, the blue, the pink, the white, all gum. A good four feet of it. My initial reaction was complete revulsion. And then I really looked.

I was oddly fascinated.

Many years ago, I went with J and some close friends to the Museum of Modern Art in New York City. It was in its temporary space in Brooklyn at the time. We had a great visit, but the question of "What is art?" came up (as it should, when looking at modern art). My friend, who is much more versed in art and art history than I, said she thinks art requires some kind of proficiency and technique. She pointed to the piece of art we were examining - basically a two-toned canvas. I think it was probably red and white. Half the canvas red, half white. My friend said to look where the two colors met, the line between the two was completely straight and a clear division of red and white. It is hard to paint a straight line, let alone, have those two colors abut in so perfect a way.

However, it made me think of house painters. They get pretty straight lines. Does that make them artists? I know that is not what my friend was saying, but it was easy for me to extrapolate to the nth degree. And why not? If a house painter paints with skill, care and pride, doesn't it make it art?

Personally, I don't have any answers about what art is. I love the question, though. I love rolling it around in my mind, just for fun. It is one of those things my brain just likes to chew on. I like having possibilities rather than an answer. A couple of years ago, my perspective was broadened when I was introduced to the world of industrial art (thanks Scott). So much time and attention goes into so many items we take for granted every day - chairs, toothbrushes, can openers, wallets...and the focus changes depends on the artist. For some, it is comfort. For others, aesthetic and functionality. I believe that you can be an artist designing things like chairs or computer frames. I personally like art that takes me out of the mundane, makes me take a second look and think. I also think art that has multiple contributors is fascinating.

So I have to say, when I came across this...this...ode to gum, I had the odd feeling that I was looking at a piece of art. Each person who had chosen to put his or her gum there had chosen a spot carefully. It did have a kind of aesthetic to it. The black gum underneath showed that this was a work years in the making. It has a kind of fluidity to it because there are obviously pieces that have fallen off and new pieces are being added all the time. There was gum still fresh with saliva mingling with blackened tar that would not even be recognized except for its context. It certainly made me stop and think.

Actually I thought it was a fair tribute to Seaside as a tourist destination filled with people who come to ride surreys, eat snow cones, go to the arcade. There is of course more to the town. The beach is beautiful, the people are friendly, there is a sense of community... but this particular monument did not reflect that aspect of Seaside's legacy. This represented Seaside in the summer when people come from all over to have a good time and often ignore the fact that people actually live there. The town becomes sticky, gooey, and kind of sad by the end of the summer. And there it was, all on a pole, for all to see. And contribute. If I had been chewing gum, I would have added my artistic flair.

The Honeymoon is Over

Yesterday, as we were working through our morning breathing treatment, Toe said to me, "I don't want to go to school today. I just want to stay home and play with you." My heart dropped.

"Don't worry," I said, "today is a short day and I'll make sure that we don't have to do any errands after school so we can just play." This seemed to pacify him for the time being. The poor kid has had a rough time. The start of school coincided with a bout of antibiotics, which involves an extra breathing treatment. Between meals, school, breathing treatment, and transitions (to and from school, the shower to eradicate germs after, etc.), the boy has had little time to play. Antibiotics also traditionally are hard on his body. He is wired all the time, talking a mile a minute and having trouble with focusing/ concentration. Imagine Robin Williams doing stand up in the 80's, ant that's what it's like to live with Toe 24/7. He has trouble sleeping and little appetite. We know they are necessary, but it is hard slog getting through them.

However, when we got to school, he didn't want me to leave him in the line with the other Kinders outside the school like we have done for days. He wanted me to escort him into the school. Inside the school, he wanted me to escort him downstairs to the cafeteria. I got him to sit down and was ready to leave when he said, "I want my MOMMY!" in this desperate voice. I went upstairs and got a visitor's pass and sat with him through lunch. He snuggled into me the whole time. When their teacher came, I knew it was time. He wanted me to escort him to the classroom door and I said, "I have to go now, I need to turn my pass in at the office and I need to go up these stairs to do it." I knew he would be ok when I left, but I wanted to allow him the time he felt he needed (within reason) to separate.

I am so conflicted about this. I remember hating Kindergarten because it was much more fun to be at home with my favorite people (my family). I did not remember that I caught scarlet fever in my first weeks of Kindergarten - Mom had a brand new baby and thought my complaining was to get a chance to stay home....I went from strep throat to scarlet fever rapidly. Mom is still mortified.

Last year in preschool, as each day passed, Toe became more excited to go to school. He had friends, he got to play and explore with new things, he came to have a second home. Public school is so different. Can be so different. I am pretty sure Toe has a good teacher. I have had positive interactions with her. Her classroom is inviting and has a good balance of play/educational materials. She seems really together and has taken our specific CF needs in stride. I think it's just the nature of the beast.

Toe is having to learn institutional social structure - how to walk in lines, how and when to pay attention. He comes home telling me about songs he learned or games he played in P.E. and they sound Kinder appropriate. But the teacher has admitted she is feeling the half day pressure. She has a lot of material that she needs to teach and a short amount of time to do it. So free play is limited and recess does not happen every day. Meanwhile, they are taking the week to work on the word "the" (also Kinder appropriate, but this can not be helping my boy who is a fluent reader pay attention. Not the teacher's fault, just a reality).

We have discussed home schooling Toe, but realized early on that he needed a kind of socialization/social interaction I can't give him. You get it from interacting with children your own age. Before that we had never considered preschool. But we realized that Preschool and Kindergarten are really the main areas of school where you get any kind of social instruction for dealing with groups, working with others, learning how to compromise and share, and just generally how to get along with others. Toe is great with adults when he is the center of attention, but he needs work with other children. If we had other children, I don't think this would be as much of an issue.

So then the plan was that we would put him in preschool and maybe Kindergarten and then see how it went. Preschool was fantastic. Better than I could have hoped for. And when it was the end of the year and everyone was getting ready to move on, we considered keeping Toe at the preschool for another year and then putting him in first grade. But all of his friends were moving on and when we went to the local Kinder registration, Toe said to me, "MOM! Next year I'm going to KINDERGARTEN!" We opted to try it.

We have put in a lot of work in preparation, getting everyone up to speed on CF. And I feel we should at least give it a chance considering how much the staff has been willing and ready to accommodate our child's unique needs and also that this is only the first week of school. I believe in public school, I do.

Having said this, a small part of me whispers, "If he's just going to get sick from this, why are we doing it? If we're homeschooling next year or the year after, why are we putting in all of this effort now? Shouldn't we just pull him and send him back to preschool where he will be getting the social instruction he needs? I'm pretty sure he's going to be bored with the curriculum. I could do this..."

When Toe got home, I asked him if he's liking Kindergarten. He said, "I think I want to be liking Kindergarten." I asked him if there was anything he didn't like about it. He said he didn't like that he had to listen to the teacher all of the time and there was not enough playing. I think that's a fair assessment.

In a weird twist of fate, Toe had funny blisters on his hands that were odd enough that I kept him home today. One doctor visit later, we are still clueless about the rash/blisters but we have the ok to send him to school again.

I asked him tonight if he liked Kindergarten and he said yes.  I know the antibiotics and breathing treatments are causing frustration because even with no school today we had a rough day and Toe was complaining about everything I did (not enough play). At the doctor's office, he was downright manic, talking nonstop the entire time.The poor kid is struggling.

I don't have any answers. We will continue to send him for school for a few months to see how it goes and probably reassess then. In the meantime, this is a major transition that looks to be a little bumpy.

The Kindergarten Kid

 Is it possible for a child to literally be changed overnight? I took my son to Kindergarten Wednesday, a young child and yesterdayI had an independent elementary school kid. It has been coming for a while, but it seemed like a pronounced difference between the two days.

Stepping back a bit, Toe started Kindergarten this week at the elementary school where my father taught in the mid '80's.  When we went in for our early meeting with his teacher, the school nurse, and the school counselor, we went into the basement at the opposite end of the hall from my father's old classroom. Very surreal. We went into the school last week for a meeting with the staff to agree on the procedures and protocols surrounding Toe's CF. There are many. He needs to be kept in separate rooms from the other child at the school with CF (the bad bacteria in their lungs is not contagious except to each other). This means a choreographed dance as they each go to get enzymes from the office. Toe has accommodations in the classroom and the school. The meeting was productive and satisfactory. I left feeling that our needs will be met.

The first day of school was overwhelming for me. Toe goes in the afternoon and the first thing they do is go to lunch. This means no real check-in in the classroom. It was slightly chaotic and there were a lot a lot a lot of kids in the building - all K-2. We took him to the cafeteria and left him settling into eating his lunch. I managed to keep it together until we got back into the car. I thought I was really fine with Toe making this transition, but .... not so much.

It hit me as a complete surprise. I worry about his medical issues but not so much about him as a person. After seeing the chaos, all of those kids, I was hit with the overwhelming fears - what happens if he gets lost? What happens if he gets scared and forgets how to ask for help? What happens if he gets sick today? What if he forgets to wash his hands enough. He went to preschool last year, but his class had twenty children in it. We must have gone past a hundred children as we entered the school. I think the total school population is over 300 (all K-2. Imagine the number of runny noses this winter and you will see why I panicked! Yes, I know all kids get sick in winter, but K-2 still use their sleeves or just let it run down their noses more...).

 As we left the building I wondered why we were going to all of this trouble and risk and why we didn't send Toe back to his wonderful preschool for another year and then put him in first grade. BTW, I do have answers for this: Toe is excited to be with his peers from last year. He needs to learn institutional discipline (walking in rows, listening to the teacher, etc.) if he is going to continue in public school. Kindergarten is half day, 5 days a week - a good transition to a the full day of first grade. If we plan to have Toe go to public school at all, this is an important step. And the most important one: Toe is excited to go to Kindergarten. However, if he does get sick too much this year, we can send him back to the preschool if necessary. I just want to make sure it is the right choice and not a choice because I feel better about it.

I came home and cried to J and called my mom. My girlfriends came over and calmed me down.

When I went to pick Toe up, he didn't want to leave. The next day, he was excited to get to school.That day parent drop off happened in the lobby. We waited in the lobby until the kids from the  bus came in, walking single file, and then Toe tagged on at the end of the line and went off without looking back. As he was heading down the stairs to the cafeteria, another line of children (morning Kindergarteners going to the library to meet the pick-up parents) walked up the stairs. I heard, "Hi Toe! Hey Toe!" and I realized he's going to be fine. On his own. And he has crossed the line. He is no longer my preschooler. He is a big boy, an elementary schooler, in the realm of big kids.

This was reinforced at pick up time yesterday when he was mildly happy to see me but really wanted to stay and play with the kids at school. Getting him out of there was like pulling teeth, and he was very cross with me by the time I got him in the car. A snack helped and after some transition time, he was happy to be with me again. But I am realizing, he is no longer only ours. Friends and other things will take more priority as we go. And it will be fine for the Kindergarten Kid. And Mom has to keep up.

Kindergarten

J and I are scheduled to attend a meeting with Toe's teacher, the school nurse, and the school counselor tomorrow to discuss Toby's special needs related to his CF. I am in shock. First, because my baby is starting Kindergarten. Second, because there are so many protocols and things I need to keep in mind as we go in for the meeting. I have done my homework like a good girl and am now left to wonder if it will be enough. Launching into the unknown. Knowing that Toe is likely to get sick multiple times from this. I think it is worth it, though. He needs the social interaction and if orientation day was any indicator, he will love Kindergarten.

The good news: Kindergarten in our area is still a half day, so this won't be such a shock to his system. Toe is attending afternoon Kindergarten, so he doesn't have to wake up at 6am to do all of his breathing treatments and breakfast before getting to school at 8:20. We can get up at a leisurely rate and still get him to school. We'll see how it goes!

I'm pretty sure HE'S ready.

Role Model

My Dad's cousin Lenore turned 82 in June. She is one of the people I admire most in the world. She lives her life with passion and conviction. Here's a snapshot:

At 82 she is a yoga instructor. She started doing yoga under 10 years ago and trained to be an instructor in 2007/08.  She offers classes multiple days a week, specializing in yoga for those with physical limitations. She cares for a large garden - I think it's at least 1/2 an acre - and lives off the garden year round. She cares for a number of animals - most of them rescued. She keeps more than 10 fish tanks with tropical fish and amphibians. She is an outspoken advocate at both the city and state level for seniors and the poor ... She is active in mind and body and heart and I have learned so much from her. There is no way I can do her justice, so I will just share a few photos from our last visit.

If you are wondering, yes, she is the person who taught me how to make Pysanky (those eggs). She no longer produces any because she has a tremor in her hands. A terrible loss. She is very artistic and her eggs were gorgeous. Her life story could fill a book, but I'm not sure anyone would believe it. It is as incredible as she.

The New 30

I turned 40 this summer. Not sure where my 30's went. Not sure where this summer went. The celebrations lasted about a week and one hardcore friend sent me a birthday card every day of July (I think a few may have come in June, too). It was a variety of parties in a variety of groupings/scenarios, all just right for me. Thanks to everyone who attended and a special thanks to Miss Bluestars for throwing not one but three parties for me!

The barbecue the night before:

The Actual Day:

 The Hike/Picnic and Elegant Dinner/Slumber Party

After this, I crashed and burned for a few days. But the next weekend, we had another tea party with R and A!

Great times with great friends. I feel so fortunate.