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!

White Christmas... sort of

Right after we got our tree this afternoon, it started to snow. Unlike this morning's dusting where the flakes were almost invisible, this was the real deal. We had about 15 minutes of big, beautiful flakes. For us, that's practically a snow storm.

J and Toe took the opportunity to have a light saber battle and Toe tried to scrape together some snow balls for a snow ball fight. It was incredible how hard he was willing to try. He made snowballs the size of superballs - wet and slushy. His aim is actually getting pretty good.

When the snow stopped, we brought out the bubble maker he got in Disneyland to see if it was cold enough for the bubbles to freeze. It wasn't, but the boy had a great afternoon in the back yard anyway.

Annual Fuzzy Bear Hunt

Each year in the autumn, we find a sunny afternoon to walk the trail from the Netul Landing to Fort Clatsop. It has become a tradition to look for the "fuzzy bear" caterpillars as we go.  We were not disappointed this year - we found caterpillars before we even got to the actual trail.

Toe was very gentle with the caterpillars he encountered, waiting patiently for them to climb on his hand.

We immediately noticed a resemblance between the caterpillars and J's new "face ferret." J grew the mustache for a show he's in. The final performance is tonight, but the mustache will stay until Halloween. Toe wants J to dress up as Mario for Halloween (to go with his Yoshi).

The 'stache

We tried to take a photo of J with the mustache and Toe with a caterpillar on his face, but we realized quickly that those guys are REALLY prickly when they get close to your face!

Caterstache

J liked the idea, though, and branched out to slugs as well....

Slugstache (don't try this at home, folks!)

It was a beautiful day - sunny and cool - with no wind. It served as a great contrast to the storm last week.

We also found a snake on our walk. At first, we thought it was dead, but it was just resting.

A poor photo of  Toe with a snake

August, September, and October are the busiest time of the year at J's work, and he has been doing a show at our local theater to fill in for a friend (who had some family issues at the last minute). It has been a very busy month for us and we have not had much family time. It was SO nice to have time this day to remember that we truly enjoy spending time together.

Detective Sasha on the Case

We've had Sasha since early February, when Lenore could no longer take care of her. She came to us stressed out after two months of watching her "mother" (Lenore) decline in health, with many people (including health care professionals, friends, and support personnel) coming and going all hours of the day. She left Lenore's side as little as possible - for bathroom breaks and to greet visitors at the door. Other than that, she planted herself between the couch where Lenore spent her days and the coffee table - a small place for a large dog, but as close as possible without climbing up next to Lenore. Toward the end, as more health care professionals came to exam and move Lenore, Sasha watched every move with anxiety. We could tell that the responsibility of watching over Lenore was weighing hard on her and we finally decided that it was time for her to come live with us.

Sasha politely got into the car when I asked and rode home in the front seat next to me, shaking for the entire two hour drive. She refused the french fries I offered her as a peace offering. When we got home, she was greeted by the Hussa Boys - J, Toe, and Uncle Awesome - who all lavished her with attention. She was reserved and polite. I texted Lenore's full-time caregiver (and great friend) that Sasha was "cautiously optimistic."

She texted back that she and Lenore had had a good laugh over that one. It sounded just like Sasha.

I traveled back and forth between our house and Lenore's a lot this spring. At first, when I came back, Sasha would sniff me all over, tail wagging like crazy. Then Lenore died and I came home wearing a coat of Lenore's (long story - I used it for strength when I met with the lawyers). I held it out for Sasha to smell and she sniffed it, and then looked down at the floor, tail down, for a very long time. I hate to anthropomorphize, but it really looked like a moment of grief. J came into the room and she went to him and  never looked back at the coat, even though I left it there for her to return to. After about half a day, I removed it and took it to the cleaner's.

Since that time, we have worked to make this fourteen year old girl feel as comfortable as possible and she has brought great joy to our lives. She bonded with Jason on Day 2 when he took her to the local pet store and gave her a bath. She has a bed on each floor of the house. Toe worships her with the adoration that a child gives his/her first pet. She is ever polite and gentle, a truly remarkable dog in the mildness of old age.

Sasha is a creature of habit and she gets a walk twice a day, rain or shine. The walk is for her, so we go at her pace, stopping as much as she wants to. She is very good on a leash and incredibly easy going. The length of the walk varies depending on her endurance on any particular day.

At Lenore's, there was usually another dog around and always had at least four indoor cats prowling nearby. She has come to our house an only animal, so she is always on the lookout for other animal life when we step out. She also loves stopping to meet people (many of whom comment on her beauty. I always respond with her age and the fact that she is so even-tempered).

Sasha spends the majority of any given outing with her nose in the air, following paths we can neither see nor smell. She stops to investigate regularly and sometimes leaves her "calling card." Her pace and process are incredibly methodical and I become absorbed watching her each walk. I am always fascinated to watch her ears, the way she sniffs one spot or follows a complete trail, how she finds a scent and picks it up five to ten feet away. It is like watching a detective or private investigator at work.

I know all dogs do this, but because of her age and pace, I take closer notice of her methodology (we stop A LOT). I wonder if it is just curiosity or instinct that drives her or if she is working like a detective, piecing together sordid tales of the outside world. There seems to be no outer purpose. Our old terrier lab mix, Abbey,  always searched for small critters to catch. Not so with Sasha. Occasionally she will find someone hiding in the brush or see a deer crossing the road and show no desire to take chase - she looks on with interest but with no sense of predatory intent. It's fascinating.

Sasha spends her days sleeping and spending time lying in the back yard, watching birds come and go, but her favorite times of the day are dawn and dusk, the times when she can resume her investigation of the invisible neighborhood gossip. J and/or I, the Watsons to her Sherlock, accompany and watch and hope we learn something in the process.

Spider Season

 I took myself "forest bathing" this morning in one of my favorite local parks. It started out supremely foggy and slowly burned off as I walked. I couldn't have asked for better light. These were all taken with a small point and shoot. I kicked myself for not bringing my good camera, but the point of the walk had been walking, not taking photos.

I believe there are three kinds of walks: exercise/GO-ing walks, partner walks, and soul walks. You can combine two of those three elements in a walk, but it is hard to combine all three. You end up missing something. Today was a soul walk for me. I certainly was exercising, but I was not on a time frame, and I chose my path as I walked. I stopped to take photos of things that stood out to me today.

It is spider season here. We have so many different kinds of spiders appearing in and out of our house, it feels a little like a wing of a zoo. Every time we walk outside, some new web is at head height, waiting to catch an unsuspecting human by the mouth.

In the forest, they are everywhere. Branches, ferns, grass, are all covered with webs, so many, it looks like someone went crazy decorating for Halloween.The fog had condensed on each line and the webs practically glowed from the right angle. I would frame six webs, but only one would show in the light...

The light through the fog really showed detail and texture today (without making too many shadows).

 You could practically hear the forest working. Leaves drifted down from trees, as did drops of condensed fog. The forest was literally watering itself today (um... rainforest).

 When I got to the overlook where you can usually see the river, I was treated to this sight:

 

I thought about how sometimes being in the fog only allows you to see what's in front of you, not the big picture. It can be disconcerting because it is difficult to know what's happening, but it can also be a chance to narrow your focus and really look at what is right in front of you.

I stopped in the part of the park where J and I were married one wet, dark afternoon in February (sixteen years ago). The place feels sacred to me - I can feel a connection with Spirit, Universe, God here.

 I walked up the hill and leaned against one of the shelters and just stood, soaking it all in: the light, the cool air, the trees, the grass, the bird noises.

 I turned to my left and saw THIS:

 It was just perched there, soaking it all in. We looked at each other on and off for a while and finally I left.  On the way home, the fog was gone and autumn was just beginning to do her beautiful work.