Eclipse - a few percentage points makes a difference

We thought that 98.6 percent totality would be enough for us. The eclipse seemed like a lot of hoopla with the possibility of horrific traffic there and back. We knew in our cloudy part of the world, the chances of seeing anything were slim, but we weren't worried. It all seemed like a crazy fad.

 A dear friend of ours remembered the one from 1979 and has been waiting most of her life for another chance to see a solar eclipse. She planned to drive to Corvallis for the event and bought enough special glasses for all of us. Her enthusiasm sparked our interest, and we did some quick research and educating just in case we MIGHT get a chance to see it.

Nature was on our side. The clouds cleared early and we watched as the moon slowly covered the sun's light. Toe's first comment was, "It looks like a cookie with a bite taken out!"

We had tried to make a pinhole viewing device as well, but it never worked for us (my sister, following the same instructions, made a magnificent device that showed the eclipse, even over Face Time). We experienced the drop in temperature, the crazy onset of crickets, the eerie half-light, but we did not see any stars or solar flares. Our old dog Sasha stayed in the back yard with us but was restless the whole time. Jason was particularly moved and said that he could see the attraction of seeking the path of totality.

Toe and I actually watched the event twice - once in our back yard and once on Face Time with my sister and her younger daughter. It was fascinating to see how they experienced it - the similarities and differences of being half-way across the country, but also near (but not in) the path of totality.

My poor mother, a few miles southwest of us, experienced mostly fog. Apparently, it was a sunny day until the eclipse started and then the fog rolled in and stayed until the eclipse finished. All I can figure is that the heat of the sun was burning off the morning fog and without the sun's heat, it rolled in as it often does. 
 
After conferring with friends, we have determined that those two percentage points make ALL the difference. What we experienced was cool; what they experienced was a connection with the galaxy. Perhaps next time it comes around, we'll have to track it down.

The trees in our yard did a better job than my home-made pinhole viewing device.

Added photo: the yard debris from a major laurel hedge and spruce trim

Great Strides Update

2017 Great Strides: Toe's Green Team

Toby's Green Team raised $2800 this year for the CF Foundation's Great Strides walk. We had a great turnout of friends and perfect weather (read: weather in the 60's) for the 5K. As usual, we finished last because we were having too much fun walking.

Thanks to everyone who participated in the walk and to everyone who donated to the CF Foundation. I am REALLY behind on my thank you notes, but we are SO GRATEFUL for your support!

As a side note, we just had Toe's 3 month check up and his health is fantastic. We rely daily on so many medications to maintain Toe's health, but we are grateful that they are available.

Superheroes - the bravest is in purple.

Old Friends

It's all Fun and Games

Did I mention that we love playing board and card games? We each have our favorites. J and Toe love to play Heroclix and Yug-i-oh. Toe and I love to play Dragonwood, Gubs, and Holiday Fluxx. As a family we enjoy: Steampunk Munchkin, Legendary Showdown (Girl Genius pack), Bananagrams, Forbidden Island, UNO, and anything else we can think of. Toe is ready to learn to play hearts, which was my dad's favorite.

We play outdoors when we can and Sasha loves to spend time with us in the back yard, alternating between sunny and shady spots.

Spring

Eyes dilated much?

We are fully in Spring and I am stuck somewhere in January. I don't know where the time has gone.
We have had a number of Doernbecher visits, for Toby's ADHD as well as CF appointments. We have put Toe on Adderall (a medication for ADHD), increasing dosages slowly, and it has really helped improve his ability to sit and focus in the classroom. Because this medication is notorious for reducing appetite and affecting sleep, we are only able to give him doses at 8am and 12pm, covering school but not evening home life. We're still adapting and adjusting, which means many trips to Portland to meet with the doctor about dosage and other matters.

We also had a clinic visit coupled with some other appointments that included an eye appointment and took two days. We stayed overnight in Portland and went ice skating (Toe's second time ever).

Toe actually caught on pretty quickly. He was able to do short stints away from the wall without a parental hand by the end.

(Toe's eyesight is great, by the way). Toby's stomach problems have mostly been resolved as well. Our gastroenterologist is great.

The night before Easter, Toe became very ill. It was a long night and we think the Easter Bunny had a hard time knowing when to visit. We also suspect that he/she did not want to get sick, because there were baskets on our table, but no eggs hidden this year. Toe felt pretty cruddy Easter day, so we stayed home and rested. Whatever he caught triggered a bacterial party in his lungs and his cough got worse over the next week. We now have him on oral antibiotics (this is his first exacerbation in about a year) and are doing three breathing treatments a day.

Toe is now at an age where he realizes how much time three breathing treatments a day takes and he is pretty unhappy with the arrangement. I'm sure the high doses of antibiotics are not making him feel all that great either. He has been temperamental, which is so very unusual for him.We're all doing the best we can and hoping he'll be feeling better soon soon soon.

J and I are tired, too. And maybe a little cranky. We're all trying to take one day at a time and find joy in small moments. J and Toe have begun making jokes together... a pastime that they both enjoy thoroughly, and we have all tried to find the humor in our situation. Toe decided the other night that if he were a vegetable, he'd be a stem of broccoli (because of the curly head). We're laughing where we can. We're getting together with friends as we can, trying to practice self care, and take care of each other...

I could do with a little sun.

Toe Health Update

Lung Function: Fantastic

We have actually had many visits to OHSU and the CF clinic this winter, but not for any ill health. Over the past few years, Toe has had some anxiety issues. It became enough of a concern that we felt it warranted a psych evaluation and were referred by our CF social worker. We spent late November and December doing three visits to OHSU to have Toe evaluated. The good news is that he is experiencing anxiety symptoms, nothing more serious, and that it is manageable. But, while he was being evaluated, Toe was diagnosed with ADHD. This is not a surprise and we are happy to have it on our radar, but it has been ANOTHER learning curve to hurdle. We are now facing decisions about how to best proceed.

We were given many options of scientifically proven remedies to try and had to sort out the order in which we would try them (or which ones we would skip). It was a tough decision, because the last thing we want Toe to do is have to take more medication. However, when we looked at the other options (fish oil, an elimination diet of artificial colors, martial arts or yoga, therapy, medication), we began to realize that 1) It might take a variety of solutions to help Toe 2) He's not in bad shape now, but as school becomes more focused, with more transitions (Jr. High, especially), Toe will really begin to struggle 3) As much as I love the idea of Toe taking yoga or martial arts, that involves other people, the potential for germs, etc. It also is another thing to add to a schedule full with school, breathing treatments, and medical appointments.

We have opted to start with some of the fast-acting medications to see if some could be a quick, effective fix to help Toe, partnered with therapy from the psychiatrist at OHSU who is doing Toe's med management (and coordinating with our CF team). We tried Concerta (a Ritalin derivative) over Christmas break and there were some benefits, but also some problems. We have ruled it out. Next we try Aderall. We are looking for a real benefit without altering Toe's amazing personality. If we don't see that, we will stop. In the meantime, we are trying some other things systematically. We've added fish oil and not noticed much of a difference, but it doesn't seem to be hurting.

I know there are many alternative medicine type things out there, but with Toe's CF we really want to stick with things the doctors recommend. His body reacts differently to many things that are considered herbal or "natural." We will be doing counseling therapy at OHSU and probably adding some kind of mindfulness training when the weather is better and there are fewer germs in the air.

We want to provide support for our amazing, sweet boy, so that as he grows, he has the tools he needs to meet the challenges of structure, routine of school and jobs.

In the meantime, in January, we went to CF Clinic and had a full check up plus a meeting with the gastroenterologist for the stomach aches Toe has been experiencing (severe enough to come home from school multiple days).

When your appointment is at 8:30 in the morning, you sometimes see a fantastic sunrise. You also do breathing treatment and PEP in the car.

Toe's lung function is fantastic. His lungs are in great shape, as is his BMI. The gastroenterologist put Toe on two medications - one for daily use, and one to take when he has the stomach aches. This puts Toe at FIFTEEN medications. Some are vitamins or supplements, but all are prescribed for specific reasons. Others are disease-specific medications that can only be acquired from specialty pharmacies. This is not fifteen pills a day - he covers that in two meals. This is fifteen different medications - to be swallowed or inhaled. The kid can swallow six capsules in one go. He does two and a half hours of breathing treatments per day. He does all of this because he knows it keeps him healthy.

And he HAS been healthy. I hate to jinx it, but Toe has not had antibiotics since April or May of last year. As CF is a progressive disease, we take these stretches with gratitude and appreciation.

Testing for lung function in the Respiratory Therapy lab

Wrapping Up 2016

Mario and Yoshi at Halloween

You have to love it when you THINK you have all of your 2016 photos printed up for the yearly album (J's annual Christmas present) and then on January 2, discover that you have forgotten to check the SD cards from the various cameras and the phones. I have found some cute photos, though!

This year has been such a whirlwind, such combinations of bittersweet. I spent so much of 2016 worrying - about taking care of people, closing down people's lives, if I was/am making the right choices, how things will turn out - and grieving. I just saw that last year's New Year resolution was to be Aware, Attentive, and Present. Didn't work out so well. Which has been a shame, because some AMAZING things happened this year. This year, 2017,  I'm trying to take each day as it comes (an ongoing struggle for me). That's it. And to actually enjoy the happy moments. Because REALLY, look at this:

With Nana and Papa at Disneyland

Christmas Morning - "Look Mom! Santa left me an elf suit!"

With Dama making a gingerbread house

New Year's Day on the Bay

What's not to enjoy? There's so much great here, I just have to open my eyes.

REEEEEEAAAALLLY WIIIIIIIIDE!