I can hardly believe that it has been three months since I last wrote an update. As most of you know, in August our little family of four (and our dog, Oso) said, “see ya soon” to California and made our way to Tennessee. There are several things that prompted the move, and although it was certainly the right decision for our family, it has not been easy. The move itself was relatively painless thanks to Casey, his little brother, and his dad. My dear friend Melissa was sweet enough to drive from Long Beach to Carmel Valley to San Francisco, to hop on a plane just to be an extra set of hands for the flight. She is simply the best.
We are living and helping out on a beautiful farm in a small town east of Nashville. Casey gets up most mornings to help with the morning chores and helps throughout the day with anything from cleaning eggs to moving cattle fencing. I have learned how to eviscerate chickens and ducks. With this setup Casey is able to spend time working on his music and we can spend more time together as a family. This transition has forced me to rethink my ideas around productivity. I have worked outside of the house pulling in predictable and scheduled paychecks that I’m trying to figure out what is realistic to expect of myself right now.
Between the farm work, establishing medical care for Olivia, and settling into life as a family of four, the last few months have just blown by. We deeply miss “our people” back in California that did so much to wrap us in their arms and take care of us in immeasurable ways. We were so lucky to have people around us that knew how to deeply care for us. We have been welcomed to Tennessee by some wonderful people, including the Simpsons who have been gracious enough to let us “help” on the farm. We are continuously humbled by the generosity and love that was and continues to be extended to us.
Life seems to be slowing as the weather gets cooler and Casey and I are finding that there are a lot of things that we are just now processing about the last 10 months. It often feels like the world was going by us a hundred miles an hour and it has taken awhile for us to catch up. And as Olivia’s first birthday draws near, I find myself wondering how it’s all going to feel when the day after Christmas arrives. Of course, we find ourselves in awe of her on a daily basis. In awe that she is here with us giving up belly laughs for Oscar and mimicking sounds. We are in awe that she has such a laidback temperament after the trauma that she has experienced in her short 10 months. We often say that when you look at her, you just know that her soul knows something more than any words can express. She’s already lived a remarkable life. And we know that there is just more of the sweetness to come, and for that we are incredibly lucky. But do not be fooled, the girl has an ornery streak.
Establishing medical care for a baby with a rare condition in a new state is a fulltime job – let me tell you. I’m still trying to learn the ins and outs of the system in Tennessee. We are fortunate enough to be tapped into Vanderbilt, which has a children’s hospital that is on par with USCF. The care Olivia has received has been wonderful. What is difficult is educating and re-educating about Harlequin ichthysosis, and having to answer the same questions and review the same information over and over again. As any parent of a child with medical needs will tell you, it’s draining and exhausting to go through these appointments. At UCSF all the specialists saw Olivia while she was still in the NICU so they were learning with me. Here, they walk into the room like a deer caught in headlights. What has helped me be a little less annoyed is that Vanderbilt is a teaching hospital, as was UCSF, which means that just by Olivia going to her routine appointments future medical professionals are learning about a rare condition. If that means that another set of parents down the road doesn’t have to be told outdated information and can be given some peace of mind, than I can curb my frustration that her chart is STILL not up to date after months of appointments.
Olivia has been able to maintain some weight gain without her feeding tube, but that conversation is still my least favorite and the most frequent. We go to physical therapy and occupational therapy on a weekly basis and we average three appointments a week in Nashville (about a 40 minute drive). Cognitively Olivia is typical and hitting her marks. Although, we know she has minor hearing loss in one ear, she is cooing and mimicking sounds. She still loves to hear Casey play guitar just like when she was in the hospital. She and Oscar find so much joy in “playing” together, which is usually Oscar whipping around the room and Olivia smiling and laughing along. Olivia sits up on her own and has been doing so for a little over a month. Much of her physical development is delayed though – she doesn’t roll over well, or frequently, and she is just now starting to put weight on her feet and legs. We know to be patient because she will catch up. She will be getting another ear cleaning and hearing test in the next few weeks to determine her hearing in her left ear. She may need surgery on her left hand and left foot – we have an appointment next week about that. I’m hoping none of this means any more hospital stays, but that’s always a possibility. It seems as though hair is growing in well, but her scalp is definitely one of her most dry areas so damaged hair follicles are always a concern. Overall, Olivia is doing well. She is happy and curious and sociable. We are so lucky to have her in our family.
Life is starting to find its rhythm again. Please continue to pray for us: that we are able to figure out stable income, Olivia’s continued health as flu season started early this year, and for wisdom and protection for upcoming procedures. And, as always, keep all the families with children in the hospital in your prayers. Lastly, please keep my cousin Tito in your prayers. He is recovering from being in a coma. I started a GoFundMe for my aunt where you can learn more about his progress: https://www.gofundme.com/TitoAlfaro.
In infinite gratitude,