child – Page 2 – Hana's Heart

People Can Be Awesome

Posted on July 16, 2016 by katmeander

It’s been a really great week for us. It has not been a great week for some of our neighbors here at the Ronald McDonald House. The news has been crowded with depressing stories ever since Hana was discharged from the hospital (Orlando shootings)

That’s all I’m going to say here about the news. I will say there are a lot of sick kids around here, some get better, some get worse, some hold steady. I hope we can all help each other the best we can at any given time. Sometimes you are the one who needs help. I’ve been that person. This week an amazing group of moms in a Facebook group in San Francisco rounded up an amazing collection of newborn gear for a mom here that needs it. This mom is one incredibly strong woman who I would never ever describe as needy but life has handed her and her family an incredible challenge and it warms my heart that people have jumped at the chance to make someone else’s life less stressful when a baby is coming and an older child is very sick in the hospital and the rest of the family live far away. People can be awesome too!

People like Gina are awesome, who worked so hard to raise $3,000 for Donate Life America in honor of Hana and her donor. I started writing this post Friday night before I dropped my phone (I write almost all these posts using my phone) on my face because I was so tired, so I decided to finish it tonight (Saturday). I’m glad I did because now I can include the blog post from Mitch at Apericots. Mitch sent us the Tiny But Mighty t-shirt seen in this video. The blog post is about Hana and Gina and a little about me but it’s mostly about Hana and Gina. It’s a great story! Here is the link:

http://www.apericots.com/blog/the-good-in-the-world/
People like Mitch are awesome!

This past week we went to a new playground called Magical Bridge Playground, it was developed for special needs kids and has an incredible assortment of play structures that are fun for all kids. Hana’s physical therapist recommended it. We’ve had a great time going four times this week! We met up with some San Francisco friends one day. One time I even jogged there (and back) with the jogging stroller. I decided on the way back midway between mile 7 and 8 that I am probably crazy for taking on this adventure and I wish I could bottle up my motivation to be used in other areas of my life.

Besides physical therapy, Hana had feeding therapy, bloodwork, an echocardiogram and a clinic visit. Feeding therapy is actually showing progress! Hana loves pickles. She’s trying more and more foods. It still requires a lot of effort on my part every day but small steps are being made. Blood work showed that Hana’s Prograf (tacrolimus) levels are still way too high, but not dangerously so. Her echocardiogram looks great, for a transplanted heart, which I think means that it looks like a transplanted heart and it is functioning great. The only note was that the walls of the heart look a bit thick, which they said is not surprising. Lastly, Hana is finally gaining weight and is above her pre-transplant weight! This is definitely the way we want things to go especially if we are talking about tube weaning. The doctor said, about her clinic visit, that there really wasn’t much to talk about!

Hana’s blood pressure continues to be high, but it seems to be trending down a bit. She is nearly maxed out on her current blood pressure meds so we just need for her Prograf levels to come down and her blood pressure should follow. Hana’s last scab fell off on Friday – the larger of the two Berlin Heart cannula sites. I’m giving the site a few more days and then Hana will be able to take a real bath and she will be able to swim, for the first time since mid-November! We are so excited!

This coming week we have physical therapy, feeding therapy, clinic visit, blood work and another cath lab/biopsy. It’s busy! They moved up the cath lab/biopsy because they were having some scheduling problems. After that we should know more about some medication levels and weaning. On Monday we hear about the results from her last round of IVIG therapy and we will know if we need to continue it or if she is done. Then, maybe, we will even have a clearer sense of when we can move home! There is still work to be done in and around the house. The exterior is being painted (we were advised to do so before moving back). Amazing friends are helping to clean and organize! The backyard needs to be free of all the dried leaves and the compost pile. I am so excited! In the meantime, we are enjoying warm summer weather while it lasts, since it is not really ever warm in San Francisco.

Lastly, there is a family here from Hawaii whose 14-year old daughter, Destiny, desperately needs a bone marrow transplant. Unfortunately, there is no match for her in the registry. Destiny is of Japanese, Filipino, Hawaiian and Puerto Rican descent. Ethnically mixed people are the hardest to match for bone marrow. There is less than 4% chance of matching ethnically mixed people from the bone marrow registry. If you are not already registered, I urge you all to register to be a bone marrow donor. If you are of mixed ethnicity similar to Destiny, I urge you to register or encourage someone you know to register right away, maybe we can still find a match for Destiny that will save her life.

Hana Visits Home

Posted on July 11, 2016 by katmeander

Its so strange to say that we are “visiting home” but that is indeed what we did. It makes you think about what “home” really means and for us it is still our place in San Francisco. That’s where we want to be, soon! On Saturday we made the trip, with Hana, to our home in San Francisco.

Hana got out of the car, walked out of the garage and immediately started climbing our front steps. This is all after we picked up Poppy and the two of them were quite excited to see each other. Anyway, Hana walked in the front door of our house liked she owned the place and started walking down our long hallway. You know what she was saying? “Happy! Happy! Happy! Happy!” I couldn’t believe it. I really didn’t think she would remember it, not after eight months and being so young and little when she left. She certainly seemed to remember it.

Hana LOVED being home. She had a great time. She loved being in the backyard checking out all the plants. She loved climbing things and going through all the toys she hasn’t seen in a while. Poppy loved being home with us too. Poppy also loved getting LOTS of treats from Hana. Unfortunately for me it was rather stressful. Hana was putting lots of things in her mouth. The house is quite dirty and dusty and Hana was touching everything and putting her fingers in her mouth. I found the rubber end of a door stopper and several dog treats in her mouth. Instead of getting much done, I was following Hana around wiping her hands.

The hated blue ball, kind of hoping she breaks it.

It was very clear that our house is NOT a place ready for an immune compromised person to spend more than a few hours. At least, not when they are a toddler and can’t comply with keeping their hands clean or at least out of their mouth.

We did have a great time being out in our neighborhood. But it did remind me how much dirtier our streets and sidewalks are compared to Palo Alto. It is definitely going to be another transition we will have to make when we get home. We walked through our neighborhood, got some ice cream and just checked out what’s new. Later we went to the BBQ place where we could sit outside with Poppy. It made me really sad to leave. I can’t wait to be back home! But for now, we wait and we make the best of what is.

Back in Palo Alto things continue to go well. Hana’s blood pressure is still high and I try not to worry too much about it because the doctor’s don’t seem to be too worried. Hana went to her first feeding therapy appointment with one of the speech therapists that she worked with in the hospital. It went really well. Hana has been putting food in her mouth and then holding it in her cheeks. She will do this for more than an hour. Then I have to fish it out. In feeding therapy we worked on getting her to chew smaller amounts and getting her to swallow. At home (oops, I mean the Ronald McDonald House) we have been continuing this rather laborious process but every day she seems to be making progress. Today she ate three baby pickles (she loves pickles), a string cheese stick and various crackers and pickle flavored popcorn (the latter two I mostly had to fish out of her mouth). She also will eat ice cream or frozen yogurt but seems to self limit. I honestly can’t believe she’s eating this much. Today she actually drank enough milk that I could reduce the volume of one of her tube feeds.

Feeding disorders or tube weaning is VERY stressful. Anyone and everyone I know that has had to deal with it will agree. I didn’t stress about it in the hospital, I decided to wait to tackle this after Hana’s transplant. Now I actually have hope!

Speaking of hope, I saw a sneak preview of the very nice letter written to Hana for the awesome check donated to Donate Life America. The word from Gina is that they aren’t used to getting sums of money because of a toddler or even a living recipient.

Thank you for making this so special! One of these days I hope I have the opportunity to more specifically honor Hana’s donor. Sometimes those things don’t work out. Sometimes they do. I think of the donor family often. The loss they must feel. What it was like to go home and see their child’s things around. It’s been six weeks. How are they doing after six weeks? Would it give them some peace to know Hana is doing so well with their child’s heart? Or maybe it would make them feel even more sad. I would get it either way. I hope they can feel somehow that we honor their child and choice to donate life to Hana. Below I am reposting the lovingkindness meditation for Hana’s heart donor:

May the donor family be wrapped in a blanket of love and tenderness.
May they be held and rocked in their grief.
May their memories and stories be heard as sacred.
May their compassion and generosity be a lesson to us all.
May their child’s life force bless the world with each sunrise.
In time, may they find solace and meaning in their most loving gift.
In time, may their hearts be healed and at peace.

We’ve been getting out and about and Hana is climbing and talking and really making up for lost time. She is definitely closing the gap on her development!

Thank you everyone!

The Most Fun, Ever.

Posted on July 6, 2016 by katmeander

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!

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!

Getting In A Groove

Posted on June 27, 2016 by katmeander

Things have been great! There is much happiness. Hana is really loving life, she’s so free. She does still have to put up with a lot, but she is such a trooper. She is talking like crazy. There are so many new words. She is drinking a lot too and experimenting with more foods.

We are starting to get in a groove here at the RMH. A routine is taking shape. We have a flow. I still have a longing to be home, which is even stronger since the day is in sight. I can’t wait to have Poppy with us again. So, I think the longing is really to be back as a family doing day to day things in a permanent place. I say it like that because all of this has made us think about moving out of the city. We love our neighborhood in San Francisco, mostly because of all our great friends, but city life is making less sense for an immune compromised kid. Plus, we are really enjoying warm weather here in Palo Alto, it would be nice to live somewhere warm again. For those of you not aware, a warm day in San Francisco is maybe 70 degrees for just a few hours and then the fog rolls in and it’s 55 degrees. Occasionally it gets hot, but that’s freakish weather. If we move, it won’t be any time soon.

Hana has been so happy! She still has a hard time getting to sleep at night. She still has diarrhea and bloating and seems to have intestinal pain from medications. Unfortunately, I don’t think is going to change any time soon. She does have a lot of appointments, but that won’t be forever! I did take her out jogging in the stroller and seemed to really enjoy it. She was very quiet and I discovered her mouth was loaded with cheese she hadn’t swallowed!

Thank you all for following this journey with us. All of you inspire us! We have received many letters and packages and notes and comments and they bring us joy. We feel loved and that makes all of this so much easier!

One person who has been putting forth a lot of love lately is Gina, the artist who painted the painting of Hana, The Gift. Her enthusiasm is inspiring to me. Her willingness to be so transparent is inspiring. I think that shows in her art work. I am so honored that she is making prints of her artwork to raise for Donate Life America in honor of Hana and her donor. I am in awe of her efforts, which makes me feel like I can afford to be a bit braver!

To help support the donate life effort, get your prints using the links below. They are only available until July 1st!

http://eugeniamancinihoran.bigcartel.com/product/donate-life-america-prints-4-hana
http://eugeniamancinihoran.bigcartel.com/product/giclee-limited-edition-print-of-the-gift-a-tribute-to-hana-yago

Hana will thank you!

Biopsy Results

Posted on June 25, 2016 by katmeander

First, Sunday the 26th is the deadline to order The Gift (portrait of Hana) greeting cards. All the profit from the cards are going to be donated to Donate Life America, which raises awareness about the importance or organ donation (amongst other things). See the link below!

http://eugeniamancinihoran.bigcartel.com/product/fundraising-event-the-hana-card-pre-order-only-and-only-until-sunday-6-26
I could mention the cards first because the second news, Hana’s biopsy results, were the same as last time, zero rejection!!! This news came as we were waiting to be discharged from the short stay unit, which was delayed because Hana’s blood pressure was so high. They decided to double her dose of amlodipine, her blood pressure medication. This is the second time in a week they’ve doubled it. I guess as you taper off the steroids, blood pressure can go up for a while. Anyway, we are very happy with zero rejection!

Hana has been very happy. She is talking a lot more, signing a lot more and almost running! She is really starting to climb which means all the wounds in her chest and abdomen must be feeling better. Her Berlin Heart cannula sites are hardly weeping at all. She still isunder sternal precautions for another two weeks.

Today we took Hana on a road trip eight miles from the RMH. It may be pushing the boundaries a bit but it is only 20 minutes away. There was a special occasion at the golf course there at Shoreline. Bill, an instructor, was giving golf lessons all day long to raise money for the hospital! I think he was doing it from 5am to 9pm. By the time we got there in the morning he had already raised $5,000! I think it was a nice surprise for them when Hana showed up. Bill was first inspired to do this when he saw the Dateline show about the Bingham family. Two of their kids have had heart transplants (one of them has had a second transplant) and one of them was on the Berlin Heart for a very long time waiting. Their youngest is currently waiting for a transplant. After seeing that show, he met Paul a week later and discovered Hana was waiting for a heart so he decided it was a sign to do something!

Hana is enjoying the social activity at RMH. Today they celebrated patients and siblings birthdays. People made tons of food and drink and cake. We brought out the tricycle and she loved being pushed around with the big kids on bikes.

Remember, you can order prints of The Gift by Eugenia Mancini Horan, as well as some other beautiful prints by her, for one more week. The majority of the proceeds will go to Donate Life!

http://eugeniamancinihoran.bigcartel.com/product/giclee-limited-edition-print-of-the-gift-a-tribute-to-hana-yago

http://eugeniamancinihoran.bigcartel.com/product/donate-life-america-prints-4-hana
Thank you to everyone! We’ve received so much support we are so thankful! You have kept us well stocked and fed and most importantly you have kept our spirits up and reminded us how much we need each other and what a difference we can all make, no matter how big or small.

Welcome To The Short Stay Unit

Posted on June 23, 2016 by katmeander

We’ve been spoiled rotten. In the past, I mean, not now. I’m laying in a hospital bed. The last time I was in a hospital bed, Hana was a newborn. It’s 10:30 and the movie Frozen is playing on the other side of the curtain in our tiny shared room in the short stay unit at the hospital. The mom on the other side is talking on the phone. The door to the room is open. The lights are dimmed a bit. Monitors are beeping and IV alarms are sounding.

They let Hana sleep in a hospital bed instead of a crib. It wasn’t my idea or request. Before I knew it they were ordering a bed instead of a crib like it were my idea so that I could lie in bed with Hana. It sounds like a lovely idea to me – cuddled up asleep next to your baby, when you couldn’t do it for months. But Hana is not crazy about the arrangement. She kept pushing me away. She likes her space, I guess. She is finally asleep.

Hopefully the 12-hour run of IVIG therapy goes well! We need more time out of the hospital. We got up really early this morning for the cath lab appointment. We had to be at the hospital at 6:30am. It went smoothly, her heart pressures are still high but they are coming down. The will get her biopsy results tomorrow.

In more exciting news, the amazing Eugenia Mancini Horan is offering six more of her prints for a limited time where half the proceeds will be donated to Donate Life America. Check out the link to get a better look!

http://eugeniamancinihoran.bigcartel.com/product/donate-life-america-prints-4-hana
You can still support Donate Life America by ordering The Gift cards until June 26th and prints until July 1st.

http://eugeniamancinihoran.bigcartel.com/product/fundraising-event-the-hana-card-pre-order-only-and-only-until-sunday-6-26
http://eugeniamancinihoran.bigcartel.com/product/giclee-limited-edition-print-of-the-gift-a-tribute-to-hana-yago
Show your support for Donate Life!

A Long Day Coming Up

Posted on June 22, 2016June 22, 2016 by katmeander

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)!

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

Happy

Posted on June 20, 2016 by katmeander

Hana has had an explosion of new words, both spoken and using American Sign Language. Some things she only signs (like poopy diaper, it’s probably good she isn’t mentioning that out loud) and some things she only speaks. Her new favorite spoken word is “happy”! Of course, she is also using it in the proper context – she’s been really happy!

Today was my first day on my own – my mom left to fly back home very early this morning and Paul is trying to get back to the routine of working from the office every day. So far, so good! We walked to physical therapy (certainly there were some eyebrows raised at this, but it’s only one mile away) and the route I took was quite nice and peaceful. In the afternoon after her nap, Hana and I cleaned our room at the Ronald McDonald House (it’s been a long time since I’ve cleaned a bathroom!), we did a load of laundry and we washed a bucket of used syringes (I don’t miss washing syringes). If you were wondering NONE of the syringes we use have needles.

It was nice to do some normal things as we start to think about going back home again some day.

Once again, I’ll mention that the amazing Gina is offering prints of her paintings, The Gift and 10 prints of Let Go. The majority of the price of these prints are going to support Donate Life America which is committed to getting people registered and raising awareness about the importance of organ donation. In addition to the prints, Gina is going to offer 5×7 greeting cards of The Gift for $5 each, again with some portion going to Donate Life. If you are interested, please contact me or mention it in the comments with an email address where you can be contacted. Support a heart!!!

See the links for these amazing prints below.

http://eugeniamancinihoran.bigcartel.com/product/giclee-limited-edition-print-of-the-gift-a-tribute-to-hana-yago

http://eugeniamancinihoran.bigcartel.com/product/let-go-new-large-sized-limited-edition-of-10-for-hana

A Great Summer Scamper

Posted on June 19, 2016June 19, 2016 by katmeander

Today (Sunday) was the Summer Scamper and it was great! I heard that 3,500 participants raised about $550,000 for the hospital where Hana is treated. I finished the 10K at in 57 minutes and I felt good! My only regret is that I did not do enough for our Hana’s Heart team, next year we will get team shirts, at the very least! I will admit that I cried a little when we started running – sometimes it all just feels so big, all of this, this way of life, the huge depth of emotion through all of this.

Hana had a good time too. We generally kept her away from the crowds and when we moved towards more people she wore her mask. She seemed to really enjoy watching the kids race and afterwards enjoyed running on the track! We also seemed to have constant hand sanitizing going on, the poor kid had hands sticky with so much sanitizer!

Thank you to Suzanne, Delphi, Travers, Megan and Susan for being part of our team! I hope we can have even more fun next year! Thank you to my mom and Paul, especially Paul on Father’s Day, for helping us get through the morning. Thank you to everyone who donated, you are awesome!

On the topic of donation, I’d like to remind you again that Eugenia Mancini Horan is offering prints of her painting, The Gift, until July 1st, with 50% of the proceeds going to Donate Life America in honor of Hana and her donor.

http://eugeniamancinihoran.bigcartel.com/product/giclee-limited-edition-print-of-the-gift-a-tribute-to-hana-yago

In addition, Gina is offering ten prints of the original painting that introduced me to her work, Let Go.

Please use the following link if you’d like to purchase one of the ten prints, again, 50% of the proceeds are going to Donate Life America: http://eugeniamancinihoran.bigcartel.com/product/let-go-new-large-sized-limited-edition-of-10-for-hana

Sunday Summer Scamper

Posted on June 18, 2016 by katmeander

Tomorrow (Sunday, Father’s Day) is the Summer Scamper race to benefit Lucile Packard Chikdren’s Hospital at Stanford. I will be running the 10K race! I haven’t had a chance to do much running over the last several weeks, so I hope I don’t hurt too much! If you’d like, I think you can still donate. Thank you to everyone who has donated! I hope we have some great pictures to share tomorrow!

Today has been a great day. We were all sad to see my dad go, but he has to get back home and get things taken care of. I’m kind of feeling the same way about our home in San Francisco. It’s been a dumping ground for things coming from the hospital – things she’s outgrown or are no longer useful or we just don’t have the room. Plus it’s kind of dusty and dirty and disheveled! Now, we need to start thinking about getting things ready for Hana to live there again in a couple of months!

Hana did a lot of walking and climbing and talking today! She also ate more than I’ve ever seen her eat – ice cream and cheese and bread. It’s not very nutritious but we have to start somewhere! Things at the Ronald McDonald House are going really well and we are enjoying the community feeling. Hana really likes watching all the big kids.

Remember, prints of The Gift are available to order!