Catching Up

It has been a crazy few months. I am actually a little dumbstruck by how busy it has been. First, I decided to embark on this journey of leading Tinkergarten classes for young children. These are outdoor, child-led, play-driven, nature-inspired classes for children 18-months to 8-years old. It has been fulfilling and yet, A LOT OF WORK. Between the training, the trial classes and the preparation, I am sinking. I know this will level out after I get more experienced but for now, my head is spinning. Second, Corrina’s blood levels tested high for lead so we had to get our home inspected for lead exposure. Her levels were not very high, but still, we had to get a lot of painting, cleaning and repair work done to protect against possible lead exposure. We did get Hana’s lead level tested again (she never had any detectable lead) and it came back as nothing, so that’s one relief. Third, we’ve been preparing for our condo conversion, including our inspection. I’ll spare you the details but basically it means we are legally separating our two unit house (which was once a single-family house). This is very common in San Francisco. It is costly and timely. Lastly, is the usual recovery from vacation (this is a real thing!) and recovery from summer colds.

But enough about that boring stuff!

Hana is doing great! Memorial Day weekend we went camping, thinking the girls were on the other side of the sickness they both had right before we went. Not so. Then the coughing started for both Hana and Corrina. I ended up having to take Hana in for a chest x-ray and a bunch of other tests. Everything came back fine. Paul and I managed to not get sick although we were feeling a little traumatized from the camping trip, because it ended up being so hard with sick kids.

Hana had her ballet recital, which was really fun. If you really want to watch her two dances, you can here:  https://vimeo.com/276555941
Just skip to 19:42 for her class’ tap dance (“If You’re Happy And You Know It”). And 39:44 for her class’ ballet dance (“Bunny Rabbit Blues”). Otherwise, here are a few professional images captured by the photographer Natalia Perez from the dress rehearsal.
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Next, we went to our dear friend, Megan’s wedding. Hana was excited for months/weeks for Megan’s wedding! Now, Megan is very special to us because she came to visit every week while Hana was in the hospital and living at the Ronald McDonald House. It gave me some time to get away for an hour or two and it gave Hana some special time with an amazing person. Even when Hana was back in the hospital for a month with adenovirus, Megan came. We are so sad that she moved to Arizona a few months ago (good for her, but we will miss her so much).
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Then, we had the highly anticipated Summer Scamper, the walk/run on Stanford University’s campus to raise money for the children’s hospital. Thank you to all who donated to the Hana’s Heart team. It was a small team this year and we really missed some of our past year’s team members. But it was a lot of fun. It was our first year doing the event after knowing about Hana’s heart donor, Leo, so that made it really special. We even had a few of Leo’s family members participate as virtual racers! One racer even made a really cool shirt. I had no idea of this until after the event (I guess I need to find more time to check my email.). We went down to Palo Alto the night before where I had gotten a deal on a hotel with a pool. We went swimming and then we went out to dinner. The next day we were able to get to the race quickly. We walked the 5K together as a family and then Hana did the fun run for 3 and 4-year olds! She had mixed feelings about it (because I didn’t run on the track with her, I thought all parents had to be off the track, yet some parents stayed, so it made her a bit sad). I did run right next to her in the grass, though.
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The next weekend we went to Camp Taylor’s family camp for the first time. Camp Taylor is a camp for kids with heart disease. We didn’t go last year because I wasn’t sure how that would work out with a newborn. This year was the first year they had camp at their new facility, so it wasn’t quite what it normally is as they continue to build the camp. Hana had an amazing time. She is still talking about it and can’t wait to go next year.
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After all that fun in June, Paul and I were exhausted. But then we had to rush around to do the lead work, where we had to be out of the house for a couple of days, and then get ready for the condo conversion inspection. I had to get a new phone somewhere in there. Thankfully, the lead work is DONE and the condo conversion inspection is over for the time being (let the real work begin!). My summer season Tinkergarten classes started and I’m getting in a bit of a groove with that so now we are playing catch up on everything else. This past week all of us except Paul had a cold.

We are looking forward to some more fun in our jam-packed August. My parents are coming out and we are headed to San Jose for the annual California Homeschool Conference. This is my first time going, so we will see what the homeschool landscape is all about in California. I’m really looking forward to it, as we need to make some big decisions in the coming months about Hana’s schooling. Between now and then, we need Hana to stay healthy because she has a big day coming up right after the conference, on August 13th, when she has her annual cardiac catheterization and biopsy. Then, a few days later its her birthday and then a few days after that we get to go to Hawaii to visit my sister’s family and my aunt and uncle! Please keep some positive thoughts and prayers coming Hana’s way for her cardiac cath & biopsy. We want her to be healthy and we went everything to look beautiful and come back as no rejection.

Thank you all for following Hana’s journey. We always appreciate all the support. I hope my updates can be more timely in the coming months when, hopefully, things quiet down a little bit for us!
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A Very Special Heartversary – Remembering Leo

Today, Memorial Day, is the 2nd anniversary of Hana receiving her new heart, her gift of life. Yesterday, far away in Colorado, a family, Leo’s family, was remembering him on the two-year anniversary of the day he died. Leo was a toddler, full of life, who touched the hearts of those around him in a special way. He was, of course, cherished by his parents, Kelly and David and his extended family. His first word was “Dada”. He started walking at 10-months old and quickly started running after that. He loved ZZ top. He liked to eat goldfish crackers, puffs, potatoes and BBQ ribs.

Leo had a few unexplained seizures, the first one at six-months old after his six-month vaccinations. He was admitted overnight to the hospital. Then, a couple more after that, but everything checked out fine, so they figured it was something he would outgrow and put him on medication to prevent further seizures. Then, one day in May while sitting on his father’s lap he became unresponsive. They administered emergency medication, called 911 and he was rushed to the hospital where he had a grand mal seizure. Leo was life flighted to the children’s hospital in Denver and 12 hours later his seizure finally stopped but left him in a coma that he would never come out of. After 8 days in the hospital, he was gone.

When you have a child, your heart changes forever. You are never the same person again. So, I imagine when you lose that child, your heart gushes with so much grief, it must feel hard to ever stop or slow down. Your child is gone but you are still that changed person, never going back to being that child-less person you once were and now there is a piece of you so vital that is now missing. So, in the midst of all of that, David and Kelly, Leo’s parents made the incredibly selfless choice to donate Leo’s organs. His kidneys went to a recipient and his heart, his perfect heart, came to Hana. So sweet, sweet Leo was gone but his heart beats on as Hana’s gift of life.

On this day, I celebrate Hana’s second chance at life and remember and cherish Leo’s life. The boy he was, the people who loved him so much. Please, if you can, take a moment or more and say a prayer, spare a thought, send positive vibes to Leo’s family and remember what a precious gift he was to them.

At the end of January we received a letter from Leo’s parents. We replied with our own letter a couple weeks later. Then, a week or so ago we got a call from the nurse practitioner at Stanford saying that the family has requested a consent to release our personal information, so that we can contact each other without having to go through the donor network. I sent in the release but since I had found Leo’s mother, Kelly, on Facebook, I decided to send her a message. So, that’s how we’ve been communicating. I hope in the coming months, years we to get to know the family better and learn more about Leo.

In other news, things have been busier than ever. Corrina turned 1-year! Hana successfully weaned off steroids! Hana had another biopsy which came back good, a 1a, which they treat as no rejection. Her next biopsy will be in August for her annual cardiac catheterization and biopsy. We went back to Pennsylvania to see family for a week! I’ve been doing training and preparation to lead Tinkergarten classes this summer (outdoor, play-based, child-led nature activities). Both kids were pretty sick this last week but managed to recover enough for us to go camping this Memorial Day Weekend. Now, they are settling into some bad coughing, so hopefully this too can pass without any drastic measures.

We are in the final month before the Summer Scamper which support the children’s hospital at Stanford – Lucile Packard Children’s Hospital. You can support Hana’s Heart team, especially in memory of Leo. With your help more children can get a second chance at life.

Lastly, please remember the importance of organ donation. If you haven’t already, register to be an organ donor.