Poor Timing/ No! Bad Virus!

In the ER - pre-Motrin

Let me start by saying the visit to the Emergency Room was only because Toe's regular doctor was booked, it was a Friday, and we had plane tickets to fly to Texas on Monday. If it had been a regular week, I would have let it ride. We suspected he had a virus, but just wanted to check in. Because Dr Ram's schedule was full, they sent us to the Emergency Room and Toe went through a variety of tests to rule out viral meningitis, something CF related, or a bacterial infection.

We hadn't given him any ibuprofen because we wanted them to see how he was pre-pain meds. The ER doctor told us that wasn't necessary, he would have trusted us...and then gave him Motrin. We waited until it worked and the doctor had spoken to one of our CF team. He sent us home with a note so we could cancel our flight if we needed to, which turned out to be a good thing because Toe was sick for a full week.

Post-Motrin

Not a fun virus - high fever for a full week, vomiting, swollen lymph nodes. The kid felt so terrible he did not eat anything but a few crackers a day. He lost quite a bit of weight.

The next day...

On Thursday and Friday of the next week, J and I were unsure whether to cancel the plane flight again (set for the next Monday) or not. We decided to wait. Saturday, Toe perked up and did not need meds every minute of the day. Sunday we decided to go ahead and travel. Monday, Toe and I got on the plane for Texas, and although his lymph nodes were still swollen, he seemed fine the entire trip. Thank goodness! We were in Texas for a full week and have just returned. Keeping our fingers crossed that he stays healthy for a while.....

Summer Days

Want to know how the kid has been spending his summer? Here are some adventures..... (he's making banana bread above).

We opted for simple kid stuff this summer. It's the speed we can handle.

Row, row, row....

Mom and I took Toe on out in an inflatable boat on the river the other day. He still needs some work on paddling, but he had a great time.

Mom did too - don't you think?

I think Toe's favorite part was dragging his fingers through the water. I am constantly reminded that I need to slow down and allow Toe to have these simple pleasures (ones that I remember having and enjoying so much as a child).

Recap

I received a hand-me-down (but still very new) iPad for Christmas, right before Toe was admitted to the hospital. I just got around to connecting it to my computer for the first time last week. Needless to say, it was a real overview of our last eight months.

First time admitted to the hospital for Toe's CF. J and I both stayed with him in the hospital for two weeks. We celebrated Christmas in the hospital. We played cards and cards and cards.

Once we got back into the swing of school, J's folks came to visit from Texas to help Toe celebrate his seventh birthday. He and his Grandma Gus made an EPIC cake.

Toe had a couple of successful check-ups at his CF clinic..

We had some beautiful spring days where we could get outside.

J shaved his head to support of a friend going through chemotherapy. He then asked Toe to draw on his scalp in permanent marker. Yep. Surprisingly, permanent marker is not permanent on Toe's scalp.

Uncle Awesome was there, providing support and laughs, especially as spring wore on and Toe was home sick for an extended period of time (Toe pretty much missed the last two months of school and then had another hospital stay).

Kind of a bumpy spring... but many good moments as well.

Brush with the Past

A few weeks ago, we had to drive out of town and on our way home, I drove to my my mom's old school to show Toe. Mom taught there more than twenty-five years and for a long time, the place felt like home to me - I'd just stop by to visit her as I could... I spent hundreds of hours helping prep her classroom, reading with kids, and generally working with first/second graders and/ or the associated art, writing, and math projects. I even slept under the table in the back of her classroom some afternoons.

As we drove up to the school, I realized I was only a year and a half older than Toe when she started working there. I remember playing on this playground the first day I came to her school.

Hot and Cold - Experiments in Summer Temps

The weekend after Reduced Day Camp, had two more experiences that became important lessons for me.

After a three hour drive, we made it to Mom's favorite place in the world - Namanu

Saturday, we drove three hours up to the Sandy River near Mount Hood to visit Camp Fire Council’s Camp Namanu. Mom went there for a week every summer between the second and ninth grade, took us to family camp when it was allowed (starting when I was in high school), and now attends “Friends of Namanu” weekends annually. A few years ago when my sister and her girls were visiting, we took the kids to family camp and had an amazing visit. Saturday was Namanu’s open house, a time for potential campers to see the place. As I have no intention of sending Toe there this summer, we kind of crashed the party, but we wanted to take the opportunity to show Toe around again (it has been four years since his last visit) and have an outdoor experience (As a side note, I did talk to the camp director about whether she could accommodate Toe’s CF if we ever felt he was up for camp – she actually knew about CF and gave a conditional yes. A remote possibility for us, but it was nice to know there was even an option. Family camp has been cancelled this year and potentially long-term).

It was supposed to be hot that day – the forecast predicted 100 degrees. Toe wilts in the heat, but we decided to risk it. We’d ride up with the air conditioning on and rely on the lower temperatures in the forest. Worst case scenario, we’d drive there and not get out of the car…

Surprisingly, the weather was perfect. The sky was overcast and temperatures hovered in the low 80’s. The air felt perfect to me – slightly warm with a breeze. However, Toe did not get that memo. It was too hot for him. He made it to the story house, near the entrance and wanted to play in the meadow. After a few minutes in the meadow, I took him to the art barn to cool down, where he did a project and then we set off to get a souvenir next door. By this time, he was hot and cranky. We took him to dip his feet in the water and it placated him momentarily, but it was shortly followed by a meltdown. We finally had to pour a full water bottle over his body and wrap his head in a wet towel to get him back to the dining hall where Mom drove to pick him up. We had been there under an hour and a half, mostly in the shade. It was 81 degrees.

The calm before the storm. Twenty minutes later, he was DONE.

Lesson # 1 – Right now, the kid can’t take the heat. That trip to Klamath Falls/Ashland that I was hoping to do this summer to visit friends will probably not happen. Nor will the road trip I had fantasized about taking to visit my sister in Illinois. Actually, any summer travel seemed pretty impossible from that day’s experience. I had a sinking feeling about travel in general. We can’t travel during flu season. We shouldn’t really travel during the school year because Toe misses so much school from illness anyway. I thought summer was our time. Apparently I was wrong.

The next day, we went to the Mill Ponds for a North Coast Land Conservancy event. Toe started the morning cranky because he had been up late the night before and was very tired. But there were dip nets and magnifying glasses and critters. Pretty soon, Toe and his dad were fully absorbed in catching snails, damselfly larvae, beetles, and marsh grass. Mom was there, too, and it turned into a perfect outdoor experience for our family. We were the only non-NCLC people who attended the thing because it was threatening to drizzle and was 64 degrees.

The visor is actually a pair of special magnifying lenses he borrowed from our guide.

Lesson # 2 – We live in the right place for this kid. We’ve had weather solidly in the mid 60’s to low 70’s this summer while inland, they are experiencing a real scorcher (for us) – 90’s almost every day. We can actually go outside here and enjoy the weather, especially on cloudy, cool days.

So, I’m having to recalibrate my thinking. We’re going to stick to coastal regions as much as we can this summer and continue to experiment with warmer weather in situations that are short. A friend of mine said, “You should go to the Olympic Peninsula!” I remember going camping there with my mom and a dear friend when I was in college. I was hoping for sun, but we got drizzle and fog. I remember thinking, “We drove all this way to have the same weather we have at home?” I am learning to appreciate that cooler weather. The Olympic Peninsula is looking mighty fine.

Reduced Scout Day Camp

 The hike to the range: "Moooommmm, don't take my picture...."

One week after Toe had his PICC line removed, he was scheduled to attend Cub Scout day camp. The camp ran 8:30 to 3:30 Monday through Thursday, with a family event on Friday. It became apparent after a couple of days post-PICC that Toe did not have enough energy to attend. When I informed the leader for our district, she was very understanding but felt badly that Toe would have to miss camp (as did we). She suggested that the most high-interest part of day camp was the BB gun shooting and bows and arrows and asked if Toe might like to attend camp for those activities. It was two and a half hours for two days. We jumped at the opportunity.

Archery

 Shooting (BB Guns)

So, on a dusty Tuesday morning, we arrived in time to hike the mile to the range with a group of Cub Scouts. Toe was able to see the fellow Wolves from his den for the first time in two months (he has been sick for months and missed scouts due to illness/treatments). The boys learned how to hold bows properly, shoot arrows, and bow and arrow safety.  Toe managed to hit the corner of the target of the boy next to him… Then they rotated to BB guns. They received a talk about safety, put on their goggles, and shot at targets. Toe did not hit his target, but managed to shoot the clothes pin holding the target up.  Each group was too large for all boys to participate at once, so I spent most of my time watching/entertaining the boys not shooting. After the mile hike back, it was really time for us to go.

The next day, Toe opted to catch a ride to the shooting range – a good choice, as he was tired and short tempered. When we got to the range, his mood improved, and he fell in with his friends. It was more of the same, but the boys knew what they were doing this time, so things went more smoothly.

It was incredible to have Toe be able to participate so close after his hospital stay and home infusions. The experience showed me that two and a half hours for two days was exactly the amount that Toe could handle and that we had made the right decision not to send him for the full week. I am extremely grateful to the district for allowing Toe to attend on a reduced schedule so that he could have the experience without having to sacrifice his health.

Waiting in-between was hard. And Mom just kept shooting photos.