The Most Fun, Ever.

On Monday, Independence Day, we drove to Santa Cruz for the day. If you are on Facebook you might have seen the little video that Facebook automatically made from a few of the pictures on the beach. It does not even tell half the story. Let me tell you the rest of it. But first I just want to plant a seed in your head because its been growing in my mine – its about embracing every moment, there are best days and there are worst day and there are good days and there are bad days and for some of us, our “bad day” is someone else’s good day. But more on that later.

We had fun on Monday seeing the redwood trees and walking downtown Santa Cruz while Hana stuffed her mouth with chocolate covered biscuit that she wouldn’t swallow. Eventually half of it was spit out and the rest was swallowed. Then we went to a tiny little beach near Pleasure Point, about a block from a house that Paul and I rented when we got married in Santa Cruz (well technically Pescadero). To say Hana loved the ocean is an understatement. She was kind of scared and intrigued by the waves at first. Before we even got to the beach she kept going to the railing over the cliff that went down to the ocean. Then, after witnessing the waves for a few minutes she decided it was the greatest thing EVER. She clapped every time a wave crashed. She squealed with delight when the waves rushed over to us. I’ve never seen her so excited and happy. My parents got to witness a slice of this when we FaceTimed with them for a few minutes. (Too bad I didn’t really capture it on video.) She got pretty wet from her diaper on down but was very excited. When we left she kept running back to the stairs down to the sand because she did not want to leave. It was so heartwarming and joyful to witness! It was a good day, maybe even a best day!

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​​​Hana had another clinic visit on Tuesday. It went well. Things seem to be going very well. She doesn’t have another cath/biopsy until late July and then the next one is late August. Maybe after that we can move home. We shall see. In the meantime, we can do some day trips to our house in San Francisco! I am excited to get some things done around the house so that we can live there again! The other news from the clinic visit is that Hana’s blood pressure is still too high. We are working on meds to get that down, they increased her diltiazem again. She is continuing to wean off of the sildenafil and the prednisolone. I worry a bit that her appetite hasn’t taken off that much while on the steroid. I’ve heard that its supposed to and it did get better but has now plateaued.  I really want to get rid of this NG tube. I want Hana to be eating!

When you spend enough time living in a hospital and then living at a place like the Ronald McDonald House, especially at a place that serves very severe and complicated medical conditions, you get to hear a lot of stories. In some ways it is a comfort to feel “normal” amongst all these families that have experienced very tough times with their children. You see a kid wearing a mask or has a feeding tube or oxygen? No big deal. My kid’s been there. There is less explaining.
After hearing so many stories over the long months I realized that we have it easy. Now, many people reading this might think that’s crazy, that this has been tough and incredibly hard. It has, but its all perspective. Someone’s “bad day” might be my “good day” and my “bad day” may be someone else’s “good day”! I’ve also realized that this does not matter too much. Stress and suffering is still stress and suffering. I’m not saying that all stress and suffering is equal. Life threatening situations are indeed stressful. This has been hard and stressful for us. Paul and I laugh, actually laugh out loud, about the things we used to stress over. I think what I am trying to say is, lets be kind and gentle with one another because almost all of us are experiencing some kind of suffering or stress. Maybe I’m saying it because I haven’t always been kind or gentle. Or I could have done better. I could do better. Maybe I’m saying this because I’d like people to be kind and gentle with me. People have been kind and gentle with me, thank you.

This (hospital, Ronald McDonald House) is a very hard and inspiring place to be. There is both a lot of suffering and a lot of hope. There is a lot of heartache and joy. You see it on the faces of the kids. You see it on the faces of the parents. Thank you for reading and loving and praying and commenting and gifting and sharing it helps bring on the inspiration and hope and joy, and the good days! We need it!



A Long Day Coming Up

Tomorrow, Thursday, is going to be a long day. Hana has her cath/biopsy in the morning. Hopefully we will get to leave around lunchtime. Then we have to go back to the hospital in the evening for her overnight IVIG treatment. I am preparing for a lot of boredom and crankiness.

It’s the first time we will be taking Hana to the hospital for these treatments as an outpatient. I hope I remember to pack everything!

Today has been another great day. Hana is talking and happy. She still runs around and says, “Happy! Happy!” I wish I were more like her. After all she’s been through and all she has to face, she can still be happy and she can share it without hesitation. Maybe I’ll experiment with walking around and saying “I’m happy!” when I feel it.

But it’s hard sometimes. I try not to worry about the results from tomorrow’s catheterization and biopsy. I shouldn’t worry because there is nothing to worry about… Not until there is actually something to worry about and we don’t know when that will be. Maybe never. If I can really put that to rest than what else is left to feel? Happy!

If you would like to support saving lives with organ donation, please consider purchasing a print or cards of The Gift, a portrait of Hana by Eugenia Mancini Horan. The majority of proceeds are going to Donate Life America!

To order the print, only available until July 1st: http://eugeniamancinihoran.bigcartel.com/product/giclee-limited-edition-print-of-the-gift-a-tribute-to-hana-yago

To order a pack of five 5×7 greeting cards, only available June 26th: http://eugeniamancinihoran.bigcartel.com/product/fundraising-event-the-hana-card-pre-order-only-and-only-until-sunday-6-26


From our room at the Ronald McDonald House, we can watch the moon rise at night. Lately it’s been fantastic. Hana loves looking at it too (she’s been getting to bed way too late)!

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Thank you for all the great gifts, packages, food, visits and decorations! It’s been great and very heartwarming.

Ronald McDonald House

Today was our first day with nothing medical to do. All that means is we didn’t have to go to the hospital for anything. We will have to go on Wednesday and Thursday. I decided to let Hana sleep in a little. We finally got a good night’s sleep – there was a short period where she was tossing and turning and crying out but she was fine. We are still doing middle of the night tube feeds, so I have to get up to start and stop that but maybe my body is just so used to that by now that it’s no big deal.

Today after a late breakfast we walked to a playground. The playground at the Ronald McDonald House is off limits to Hana during summer camp and she is too young for camp so for most of the day we will have to go somewhere else for a playground. Anyway, Hana loved going to the playground! She went of the swings and the sliding board. She like watching the other kids. It wasn’t too crowded where I felt she should wear her mask and we used lots of hand sanitizer. We did leave when they came to spread new mulch.


Hana took a real nap today! She loves exploring the Ronald McDonald House (RMH). The house is brand new. They just started moving families from the old house (next door) over the week before we got there. I’m sure we are the first family to occupy our room. Everything feels new and clean.

You get to meet a lot of people here. Often, you see the same people – families I’ve seen over and over again over the last several months. It’s usually because their child has had an organ transplant or maybe cancer or maybe a baby in the NICU. People come from all over. I met two families from Hawaii. One woman with her son came all the way from Poland. She just got here and looked quite lonely. She was speaking Polish with another woman that I’ve seen around the hospital with her son for months. 

We share a community kitchen, dining room and living rooms. We have our own assigned pantry, refrigerator space and freezer space. It’s so much better than the hospital! They have gas stoves and ovens, toasters, cooking equipment and microwaves. It’s nice having something other than a tiny microwave to share! There is also shared pantry items and refrigerated food. Some miscellaneous fresh fruit and vegetables appear too. Hana is enjoying opening and closing every drawer and cabinet.

The living space does not seem to get utilized too much. There are playrooms, by age, that seem to be locked up most of the time. In fact, there seems to be a lot of great space that is locked up most of the time. The back patio/yard is nice too – they have tables and chairs and a few very nice grills.

Our room is nice. All the rooms are uniquely and were designed by a bunch of fancy design firms. The room is kind of small for all we need it to do. We have a small refrigerator for medications and then a freezer for storing breast milk. These are only available upon request. We brought in one of our storage carts from home to store medical supplies and to serve as a workstation for drawing up medications. We have a queen sized bed with a trundle bed underneath. They both have Temperpedic mattresses. Very comfortable. My mom’s been sleeping on the trundle. Hana is in her Pack N Play. We brought the toybox because it also serves as a bench. There is “closet area” but no drawers. This is where we park the stroller. I don’t think the rooms were designed to hang out in. They are also strict about no food or drinks in the rooms. It’s okay for now, but this newfound privacy feels kind of limited.

We feel very fortunate. It’s 200 square feet all to ourselves.

The location of the RMH is great. It’s a ten minute walk to the hospital, a fifteen minute walk to downtown and its across from the Stanford Shopping Center where I probably wouldn’t buy much but it’s a very nice place to stroll.

First Day Out

Well, Hana has been out of the hospital now for a full day! She has been very, very happy – exploring and running around. Sleep is still a scarce commodity. It did not go well last night – she woke for an hour or so and then we had to wake her up early to take her back to the hospital for bloodwork. She did take two one-hour naps. Tonight she got to bed a little earlier at 10:45!

Her bloodwork experience went well and she was fine with putting her mask back on at the hospital. Her tacrolimus levels were too low again so they increased her dose and she will get bloodwork again on Wednesday.

We walked to downtown Palo Alto and it was lovely. I had to get some things at Walgreens. The weather was great. Hana napped in the stroller, she was so tired. It was so nice to be outside! If only there could be more sleep happening…

Speaking of sleep, that’s what I’m going to do now. Things are falling into place and we are very elated to be out of the hospital!

Discharged 

Today Hana was discharged from the hospital. We walked out the front of the hospital. We walked as far outside the hospital as Hana has been and then we just kept going (by then she was riding in the stroller). We walked all the way to the Ronald McDonald House, which is our new home. As you can probably imagine, it was loaded with emotion – happiness, gratitude, joy but also some sadness to be leaving the amazing team of people who had come to be like neighbors, co-workers, friends and family! There has also been a little stress and fear with the transition, like getting all the new medications exactly right and getting the room at the Ronald McDonald House ready and organized – it’s smaller than Hana’s hospital room and we actually need to store a lot more things in it! Hana has never seemed happier and more like a normal toddler! But she has also had a tough time transitioning to sleeping in a strange place and in a Pack ‘N Play and it was almost 11:30 before she fell asleep for the night. Because of that I’ll share more tomorrow! After 205 and a half days in the hospital we are ready to start a new adventure!