Holiday Festivities

 Since Toe spent last December 15-31 in the hospital last year, we've been trying to celebrate the holidays throughout the month (in the off-chance that the hospital experience is repeated. Toe has been on antibiotics for almost two weeks). We've had some great experiences. We decorated the house (all but the tree - haven't gotten to that one yet...). We pulled out and assembled the Christmas train. Toe played with the Playmobil nativity. Here are some of our celebrations:

The TRAIN:
J's mom got this train for Toe when he was maybe two and we assemble it each year. The coal car's wheels have broken, but the rest of it has held together remarkably well considering the train spends about half the time on the track and half of the time "off-roading." This year, Toe has been much better about keeping the train on the track and enjoys having his figurines take rides to places across the country.

 HOLIDAY CONCERT:
Toe says he thinks this tie looks like a peacock. Last year, he was in the hospital and missed the concert. This year, the second graders sang "Rock the Holly" "While the Miller Sleeps" and then they sang "We Need a Little Christmas" with the first graders. They had hand movements. It was so adorable, I cried through the whole thing. Meanwhile J waved like a madman to get Toe's attention.... and then Toe started waving back. It was a pretty great experience (and we came away with no photos from the event...).

 COOKIES:
We drove over the river and through the woods to Grandmother's house, where we baked Iced Sugar Cookies (with a recipe from a neighbor from my childhood) and Esses (The recipe calls for a full pound of butter). We made the dough at our house and took it to Dama's to actually make the cookies.

Toe and Dad add sprinkles to Esses

Sunny was VERY interested in the process

Choosing cutters

Making Esses

 HANUKKAH
We also spent much of the week reading about Hanukkah celebrations and traditions and the Holocaust. We lit the candles with a prayer for loving kindness, understanding, and compassion...

We've also been brushing up on Christmas carols and of course the story of the birth of the baby Jesus!
Up Next: Zoo Lights!

Bread

Toe likes to help me cook but we go through phases. Sometimes he just wants to add ingredients and let me do the mixing, other times he's ready to get in and get messy. Apparently messy is on the agenda right now. We made bread recently and I could barely get him to stop kneading the dough.

Trick or Treat - ish

Toe opted this year (at the very last minute) to dress as a dragon. Fortunately, we had a dragon cape from Uncle Cool in the costume box and some (very old) clown make up.

Our Halloween tradition forgoes the traditional door-to-door approach for a more in-depth, visit a few houses and stop-and-visit approach. This works well for us because Toe doesn't like chocolate, he doesn't need much candy in his life, and it gives us a chance to visit with friends. We have a few routine stops and occasionally we will visit others in the process. Last year, we visited a few friends in north county before heading south to Dama and other friends in south county. This year, we started in south county and made it to a total of four houses (including Dama's, where we prepared his costume).

We spent so much time playing at house number 3 that when we arrived at our last stop for dinner and drinks, our host said, "Well.... are you... a ghoul?" Toe said, "No, I'm a dragon. Can I come in and wash my face?" He walked right in, washed off all of his makeup (spraying water everywhere in the process) and continued to play for our two hour visit. My kind of Halloween.

CF Update

Toe had a quarterly CF check up this week.  He was relatively healthy over the summer although it took him a long time to recover his energy after his last major illness and hospital stay. He has been sick a couple of times, but has managed to recover without getting an exacerbation (Hallelujah!).

It was the kind of visit we like to have: his height and weight growth were good, and his lung function test showed that his lungs are doing well. He is in the 80th percentile for his age for his BMI (they want him to be over 50th percentile). His PFTs came in around 110% (fantastic for him). The doctor and nutritionist were happy with what they saw.

They had a clinic downstairs for patients' families to get flu shots, so J got his (Toe and I had ours earlier).

They now take the sputum culture (throat culture) at the beginning of the visit and then offered Toe a snack. Forget stickers. In CF clinic, where calories are always an issue, you get chips, crackers, or a cookie as a prize. The nurse asked whether Toe wanted something salty or more dessert-y. Toe opted for salty and was given a choice of chips.

Eating Puffs in clinic like a champ

Because we see an entire team: nurse, pulmonologist, nutritionist, pharmacist, and social worker, visits can be long - we're usually there about three hours. We'll go again in December for Toe's next clinic visit. In the meantime, we're trying to keep him healthy and in school as much as we can.

Day Tripper

 Friday was a state-wide teacher inservice day, so we decided to go visit Toe's Godparents, A and R,  in Portland. With a threat of rain, we opted to take Toe to the art museum (his first visit). Toe did really well. We wandered through Chinese and Korean art, ceramics, and then ended up in the modern art section. We spent much of our visit looking at paintings of washes of yellow with stripes, or paint splotches. We talked about how to view paintings closely and from far away. I spent a lot of time asking Toe "Do you think this one is art? Why? Why not?"

The above painting, titled something like  "Black and White," (or was it "Black and Red?")  was determined by Toe to be a volcano: magma below, mountain above, and then sky.

After the art museum, with no rain yet, we played in the Park blocks and enjoyed the dichotomy of leaves falling off trees and blooming roses.

Don't make me sit on the pavement, Mom!

With the Godparents

From there, we walked to Pioneer Courthouse Square Mall to ride the escalators. Oh the simple joys for a small-town boy.

I need to work on training him to walk around town with other people. We walked the six or seven blocks right around five o'clock and foot traffic was heavy. Toe had a hard time keeping track of us and even tried to hold hands with an amused walker (he was busy looking at his Uncle and I was a few steps behind him)... He was safe, but needs a little practice on body and group awareness in those situations.

We wandered a little, rode escalators a lot, and had dinner in the courtyard...

Skybridge

We had a great afternoon and Toe was so worn out, he slept the entire way home.

Autumn Afternoons

One of the advantages to J's new job is that he is able to take time in the afternoon to spend with us. On Thursdays Toe gets out of school an hour early and we often take adventures. This Thursday, Toe went to see Pan with his Nana and Papa (and J and I walked to one of our favorite parks). Last Thursday, we went hiking on a local trail looking for "Fuzzy Bear" caterpillars.

Hiking this trail and hunting for Fuzzy Bears has become an annual tradition since Toe started Kindergarten, but this was the first year J was able to join us. Pretty much everything is more fun with J.

We found some caterpillars, had a great walk on a beautiful day, and enjoyed each others' company.  What a treat.

Open Wide

With all of Toe's medical appointments, we have not managed to get him to the dentist. I have felt guilt about it, but not enough guilt to force me to do anything. There has not been a huge pressing need to get me motivated: the kid brushes and has had no pain or visible cavities. I finally broke down and made the appointment and last week, Toe had his first dental visit.

The night before, he became a little worried. I told him that after all of his doctor appointments, hospital stays, and PICC line insertions, a dental cleaning would be a piece of cake. He didn't believe me. We negotiated taking a washable stuffed animal (he is not allowed to take stuffed animals most places because they are hard to clean and harbor germs). J and I both went for moral support.

Ms. J, our dental hygienist was fantastic. She explained things as she went, had Toe hold the saliva vacuum (I'm sure there's a technical term for this.. Ms. J called it "Mr. Slurpy"), stopped as he had questions or wanted to talk. It was an easy and mellow first experience. Right after they started, Toe handed the stuffed animal over to Jason so he could more fully participate in the cleaning. The kid has no cavities and the mark he has on his upper front tooth is from a mouth trauma he had when he still had his baby teeth (when they mentioned that, we both immediately identified the event in question).

Positive experience. Prize box (I had forgotten about the prize box at the dentist!). Clean, healthy teeth and gums. Check. Now we move on to another CF clinic visit next week....