the end of our Hawaii trip and back home to child proof

On Sunday night Jonika and Ollie went to a birthday party.

all dressed up for the birthday party

Stan and Andy and I went to the restaurant at the Kona Country Club. We had a great view of Keauhou Bay and the dive boats with their lights for manta ray diving.

On Monday, our last full day in Hawai’i, we were treated to a whale watching tour on the Body Glove Boat, which is where Jonika and Chris met when they both worked in the boat.

Jonika and Andy, cousins, enjoying the boat
Ollie with dad Chris

We got very close to the whales, and one even bumped the boat! I saw a baby one swimming next to mom. They winter in Hawai’i for mating and giving birth, then make a beeline for Alaska for the summer. We had a naturalist telling us all about them.

there were Spinner Dolphins swimming around too.

The naturalist told us all about the whales’ mating rituals, and we realized we had the results of the Body Glove Boat mating ritual with us. And we love them.

That night we went out for our farewell dinner at Lava Java, a nice ocean front venue with the sound of crashing waves.

Then Tuesday we packed up and Chris and Jonika and Ollie came over to help us clean up the condo and get packed up. With a very short connection in L.A., we knew we had to pack for an extra day, including my food. We put all our meds and toothbrushes in my carryon bag.

When we got to the airport we didn’t have much time to spare. They were lining up the pre boarders. But they soon announced a delay. And then more delay. And we were in the open air airport in the voggy wind. They kept announcing, “no updates, please continue to wait”. We finally made our way to the enclosed restaurant. And then we saw that something had been announced. Stan went to find out. I saw the flight crew leaving as Stan came back and said the flight was canceled. American would put us up at the Hilton Waikiloa with meal vouchers and taxi vouchers. We and all the other passengers had to stand in line for our vouchers and to rebook. We were talking to the people around us and we made a new friend, Anssi from Finland. He had been there for an IT convention. The agent found us a flight the next day on Alaska Airlines which would get us home that night. Our original flight was rescheduled for 4 pm the following day which would get us to Los Angeles after the last flight to Reno.

We rode in a great taxi for the 1/2 hour ride up to Waikiloa. The driver was the owner of a fleet and he said he or another driver would pick us up at 10:30 the next morning.

Our room was on the ground floor right in front of the dolphin pool. Andy called Chris and he said “Sweet!” and said he and Ollie would come early to swim.

We had dinner in a sports bar and Anssi walked by so we invited him to sit with us. We learned a lot about him and Helsinki. He is a sailor and a skier like us. He had been to Reno for gambling and skiing at Squaw Valley. He learned a lot about us too! We will keep in touch.

The next morning Chris and Ollie showed up bright and early. We went to brunch on American Airlines dime.

Then Andy and Chris and Ollie went swimming and Stan and I packed up. On the way out of the hotel there was a man with a parrot.

Our taxi was waiting at 10:30 AM.

And then we flew off the island.

if you look closely, in the distant left you can see snow up on Mauna Kea

Then we finally arrived home and had a few days of sleeping late on Hawai’i time. We also had to do major baby proofing because Jonika and Ollie will be here on January 16, coming to stay with us for a month. Jonika was shaken by Stan’s septic shock as we all were, and we were all reminded that life is short.

Jonika’s best friend, Lyndi, has a son the same age. Jonika said Ollie and Landon meeting will be a dream come true.

they made it! a quick lunch after 2 long flights overnight

I was hoping that my sinuses would clear up by getting out of the vog. But they are still draining. I hope to see an Ear, Nose, and Throat doctor soon.

I also started my fourth round of Radicava and my motion sensors for the precision medicine program arrived. I do have to spend a lot of time managing my illness, leaving little time for pleasure things, like knitting or playing piano and I wonder when I will be able to go back to aqua fitness. I decided to pick up my knitting and the meditative aspect of helps me ignore my sinus problems. I posted a long time ago that ALS is a disease of ch-ch-ch-ch-changes. And life is full of the same.

Even Sue, the T Rex from the Field Museum in Chicago, where Stan and I both saw her as kids, is visiting Reno at our Terry G. Wells Discovery Museum.

Holidays, family and friends: love and connection

We spent Christmas with Stan’s dad and step mom, Cathy.  Stan left for Las Vegas five days before Andy and me. He drove down towing our RZR side by side in order to spend a few days taking his dad off road. His dad has loved hiking and getting out in the wild his whole life, but due to his health he has not been able to go out.

Stan texted me this photo and it was wonderful to see John out in the land he loves.

They had a great time for three days exploring the hills near Vegas.

Andy and I flew down Friday night after Andy finished finals. We had a nice visit. There are four dogs in that house and I was bothered by an allergy to the dog hair. I know I talk a lot about allergies in this blog, but with Bulbar ALS at the extent I have it, it is a big problem. I can’t swallow or cough or blow my nose. The week before Christmas I realized my symptoms were indicative of a sinus infection.  My awesome nurse practitioner called in a Zpac for me, and then a second one. And it was still with me.  So she called in Cipro for me. I started to feel better, but the intense dog allergy made it hard to know if the antibiotics were working.

Stan had a bout of food poisoning while we were in Vegas and was sick for a day. But for once he got sick and didn’t end up in the hospital. 

Andy helped Grandpa by picking all the ripe lemons off the tree in the back yard. They were posing for a photo, both holding handles on the bag when it broke.

On December 23, Stan’s step mom Cathy’s friend, Sandy, came over and we had a nice visit. 

Andy even played his viola for all of us.

Grandpa was a great music holder

Christmas was a nice gathering of my inlaws’ friends. The guests all were impressed with my text to speech app on my phone with my wireless keyboard and my Boogie Board too.  We shared stories and laughed. 

Stan gave me some gifts that will help me deal with my ALS. One is a charging cellphone case. I use my phone to speak so by mid afternoon my battery is already running low. I have tried external batteries but they are cumbersome and the charger connections don’t last long. Now I can charge overnight and both phone and case charge and in the morning the phone is charged and when the charge goes down the phone case takes over charging it. So my charge now lasts all day. It is wonderful. Another thing is a pill grinding syringe.

It has a grinding surface at the bottom of the syringe, so you can grind a pill or pills right in the syringe with the plunger. It works best to suck in some water and suspend the ground medication in an aqueous solution. Then it can go right into my stomach through my Mic-key Tube.

The day after Christmas we drove to Kingston, Nevada to visit our good friends, Ann and John, at Miles End Bed and Breakfast. This was the end of their Christmas br√®ak. They had just returned from Carson City that afternoon. We were the only guests and they brought pizza from Carson for dinner. That was fine because we were there as friends, not B&B guests. 

Long time friends Ann and Stan talking while Zee enjoys a Christmas present of dog biscuits.

But in the morning, Stan and Andy enjoyed John’s normal wonderful breakfast. Ann had to run off to work at the clinic, which she runs. So we packed up, said goodbye to John, and stopped by the clinic to say goodbye too Ann.

Andy drove us home and we got home mid afternoon.  We had to unpack, do laundry, and pack for another trip – this one to Hawai’i. But we were able to have dinner with my sister Cathy and Rick and 10-year-old Sam, visiting from Portland, Oregon. It was too bad that was all the time we had to visit. It was also too bad I was so tired I didn’t even take photos. But here is one they texted from San Francisco a few days later.

Then we flew to Hawai’i. I was worried about needing cough assist and suction on the long flight. But I went and talked to the flight attendants in the back and asked where I could do it. They asked if I could use the bathroom. I said no, too small. Then they offered me the back row of the plane (their seats) while they did beverage service. That worked out great because it was so loud back there that no one noticed me coughing with the cough assist or suctioning and both are loud.

Our niece who we raised lives on the Big Island and her son Oliver is 18 months old. We are his ‘grandparents’ and so proud of this handsome, smart boy (spoken like every grandmotherūüėé).

Andy and Jonika have a bond closer than cousins. And Andy has a special bond with Ollie too.

We had a crazy surreal and funny dinner at a restaurant that will not be named. The waitress had real difficulty with our order, bringing the wrong things and totally forgetting one meal. But it was very fun and I was told the food that did come was great. 

Chris and Stan
Headstrong Ollie saying no to mom

Chris ended up getting his food to go. That led to jokes that may continue the whole trip – like ‘we could go back to that restaurant – but we might want to eat before we go!’

My morning view on December 31, 2017. The ocean is in the distance on the right.
New Year’s Eve 2017 (photo by Chris Grossi)

I had lots of love, connection, and hope in 2017 and I am looking forward to lots of the same in 2018 too. I hope you find the same.

Surf’s up, our “grandson” is wonderful, Hawaii’s the life for me

Having booked our trip only two weeks before (after a much needed phone call between Jonika and Andy) we flew to Hawaii on Friday March 24, for the second half of Andy’s spring break. Our niece, Jonika, who lived with us from age 11 to 15, now lives in Kona on the Big Island with her man Chris and her beautiful 8 month old son Oliver (our “grandson”). Jonika and Andy are very close despite the 14 years between them.

Just like on the flight to Panama for our Galapagos trip, I threw up after “eating”my normal two can dinner through my g tube on the flight from Los Angeles to Kona. This time I made it to the bathroom. I think it’s caused by inactivity and maybe the anti diarrhea pills I take prophactily when I fly. I guess I have finally learned I will have to pace my eating differently when flying.

The time change to Hawaii this time of year is 3 hours. We arrived at 7:30 pm and picked up our rental car, then Jonika and Ollie met us at the condo. By the time I tried to sleep I had been up about 21 hours. But when I laid down, I felt like I was going to choke on my tongue. I got up and put some of my saliva reducing medication in my grinder and took that in through my tube. I Googled to see if this was a symptom of bulbar ALS and found that it can be a symptom of Gastrointestinal Reflux. Since my throat muscles don’t work well, some of my acidic vomit stays in my esophagus after vomiting, burning the whole time. So I apparently had a swollen esophagus. That helped me get to sleep but I was low energy the next day.

Life in Hawaii is fairly low energy so all was good. We went to Jonika’s house and hung out with cute little Ollie.

Lunch was huli chicken salad. Chris was able to come home from work for lunch. Then we went to a grassy beach park that we love.

Nakey keiki with his mama and auntie

Andy had fun swimming with goggles looking at colorful fish and climbing into lava tide pools to soak. We tried to go to Costco (rather a long drive from where we were staying) to stock up, but they had already closed. By the time we were back and ready for dinner, Jonika had already put Ollie to bed. So just Stan, Andy, and I went went to the pizza place in the shopping center nearby.

Andy kept up with his training plan for his April 15 10K and enjoyed his runs along Ali’i Drive. I was envious.

On Sunday Jonika and Ollie came over  (Chris was working again) and we swam in the pool across the parking lot. Jonika and Stan had made some poke (fresh ahi tuna with lime, soy sauce, sesame oil, and avocado) which I understand was wonderful. We had lunch at the pool.

After the pool Andy took me to see the Ocean Pool and the awesome waves on the cliffs.

Dreaming about his first surfing lesson the next day. We heard there were high surf warnings for Sunday afternoon and Monday morning. We were lucky to see the cool waves in these conditions.

Then we finally did our Costco run. On Sunday night we celebrated Jonika’s birthday which was earlier in March. We went to a lovely Italian restaurant on the water called Mi’s. I was not feeling well because of saliva in my throat causing a gag reflex. I did manage to ingest my 2 can dinner. I went to the railing and looked at the ocean for awhile (memories of the night of New Years Day in the Galapagos, not feeling well, watching the ocean). My anti saliva medication finally kicked in by dessert. I slept better that night.

Monday morning Andy had his first surfing lesson. It was delayed two hours so the instructor could catch the big waves. Jonika had gone to work but Chris was off and we had time to go swim in the ocean pool and watch the big waves. Chris had his GoPro and got a video of Stan scaring Ollie in the pool that reminded Jonika and me of Stan scaring us on a kayak trip to the Cook Monument on our Big Island fall break trip when Jonika was 11.

In the surf lesson Andy picked it up right away  (all that skateboarding paid off).

He was standing up during most of the lesson. Chris, Ollie’s dad, had a surfing lesson too. Stan and I babysat on the beach and let Ollie get all sandy, much to Jonika’s chagrin (she hates sand).

Daddy with sandy Ollie

We ate dinner at Rebel Kitchen and while Andy was using my phone to video Ollie, he happened to catch Jonika’s rant about the sand perfectly:  “So this man,” (pointing at Chris), “hands me my beautiful baby boy and I notice there is sand in his nose, and in his ears! So I say ok we’re going to take a bath. Then I notice it’s even in his belly button!” We love you Jonika!

I got to hold Ollie after I was done “eating”.

Andy loved surfing so much and he loves Ollie so much. So first thing Tuesday morning I booked a visit to University of Hawaii, Hilo for Wednesday afternoon, since we had planned to visit the Hawaii Volcano National Park on Wednesday and we would be close to Hilo. I would love to have Andy go there because he would have loving family two hours away. 

On Tuesday we had a lazy morning and then we got to hang with Ollie and Chris for lunch at our condo. Then Chris left for work and we played with Ollie. Then Jonika came over after work but left for a meeting so we babysat again. No complaints. We love him!

Who wouldn’t love this kid?

How I used to talk:

How I talk now:

I wish this was how I talk but it really is mostly vowels that come out now.

Ollie loves me because we speak the same language. He says,  A, and I say, A. And I can match everything he says perfectly, which he finds fascinating. 

Andy and I walked down to the closest beach to check it out. 

He really wanted to boogie board but it was high tide with big waves on a rocky steep beach. I explained the physics of undertow and he decided not to try it.

Tuesday dinner was steak and veggie stir fry made by Stan and Jonika at our condo. Chris joined us after work.

On Wednesday we got up and out by 7:15 to drive up to Hawaii Volcanos National Park. First we visited steam vents.

Kńęlauea’s steaming crater in the caldera

Then we had lunch at the Volcano House. It was raining then, so we timed it right. Andy tried the Hawaii Sampler plate.

The caldera and steaming crater through the rain from our lunch table. 
Beautiful Koa wood oars
Andy, sitting in a $7000 Koa wood rocking chair in the Volcano House.

After lunch we went through Thurston’s Lava tube.

Then we visited Hilo and the University of Hawaii, Hilo.

We had a lovely tour from a senior soccer player, who truly loves her school.

And there was a lot to love – 15 students per class, all professor taught classes, mostly hands on learning (example: Statistics is taught on a boat out at sea.) The small school is like a family. There were beautiful trees,

Some of the dorms

and the only Olympic sized pool on the island.

They even have massage week the week before finals! Andy was partially sold when we left.

The 4 boys at dinner on Wednesday.

On Thursday we went on a snorkel trip on the Body Glove boat. Jonika and Chris met while working at Body Glove.

They announced a scuba diving opportunity and Andy was eager to try.

He loved it and scuba diving further cemented the possibility of college in Hilo.  Stan, Jonika, and I snorkeled and I was happy because I did not swallow any sea water (two of my tries in the Galapagos resulted in big gulps which scared me). The nose purge mask and splash preventer on the snorkel helped. We saw lots colorful fish and a coral arch. Andy saw eels and starfish on his dive. Andy also said he wants to work on the Body Glove boat so I made sure that he saw how hard they worked.

Andy and Jonika enjoyed the slide and Jonika jumped off the top deck after waiting in line with all the little kids (she had never done that in the four years she worked on the boat). Andy had borrowed a rash guard from Chris and it was the uniform of the crew so they kept teasing him by trying to put him to work.

Thursday afternoon Jonika’s friend Hope came over. Stan and Andy and Hope and Jonika went to the ocean pool and I happily volunteered to babysit.

Stan the fan man, as we called him, in his favorite place in front of the fan (he does not do humidity well)

Thursday dinner was grilled steak and potatoes and asperaragus at our condo with taro for Ollie.

On Friday morning we had to pack up and be out of our condo by 11 a.m., although our flight was not until 10:30 p.m. We hung out at Jonika’s again.

We had lunch with Chris at Annie’s, one of my favorite places because of their breezy lanai, and then had to say goodbye to him when he went to work. Back at Jonika’s, Andy went for a run around the coffee farm and up the steep road that Jonika lives on. Then he wanted more beach time and Stan and Jonika were game and I again happily agreed to babysit.

Ollie loves Roxy’s bed, just like Andy used to love his Grandpa’s dog beds.

It was a wonderful week of love, connection, and hope. It ended too soon, but this wall hanging in Jonika’s house says it all:

We counted really high this week!