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:
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.