Thanksgiving came and went in a flash this year. It seems like there is so much going on here, but each time someone asks I’m at a loss to describe where we are.
Michelle and the girls are back in the house now. Major renovations to make the house Zoe-ready have completed, and so they were finally able to return full time to our home. We’ve been living elsewhere out of suitcases in apartments or relatives’ homes for most of the year, and the State of the Family reflects that. Our clothes are spread far and wide, our linens and half the components of our house in storage or bags from the renovations, and our routines are in shambles.
We’re doing our best to relearn what it is to have all of us under one roof. Zoe was born and entered the hospital shortly thereafter as a 2 month old, and we have had little opportunity to settle our daily routines with her in a more “normal” state — a state that doesn’t include hospital stays, hours of meds, daily clinic visits and/or physical therapy, finally.
Despite the chaos, we are thankful. Thankful above all that Zoe appears to be making her way clear of this horrible disease, and that we’re well on our way through the long span of time where she has to be kept away from so much of life. Thankful that she is young enough not to remember any of this when we finally exit the tunnel. Thankful that our family is still intact, given how hard this year has been. Thankful for our relatives and friends for supporting us.
Zoe is doing very well right now. Her White Blood Cell count is remaining stable around 4.5 without any medications to boost it, and her other indicators are great. Her height and weight have finally returned to something more reasonable, she’s sitting right around 40th percentile for both now. Her height continues to climb in the percentiles over time, we believe she lost some growth time during her treatments and she’s beginning to catch up now. In time perhaps she will be able to make up for the months she has lost. Her weight was really high, then low after she came off her IV nutrition, and now she is on solids and it seems to have stabilized.
In terms of development, Zoe is moving along pretty well. She is not yet walking or crawling, but she is doing some scooching and little fish flop-crawls where she gets up on all fours, flops forward and then repeats to reach something. We’re excited that we may see some actual crawling in the coming weeks. It’s taken a long time to build up her core strength after so much time on her back and unable to develop her abdomen.
She is also getting increasingly verbal with her babbling. Michelle is convinced that her first word will be Mama from the sounds she’s making, but I like to tell her I think it’s going to be Grizzly, our dog. She’s doesn’t find that very amusing. 🙂
We haven’t had any more big scares lately, though we do see some rashes now and then that cause no end of stress until they go away. Right now she has a little bit of rash around her nose and under her eyes, but we believe (as do her docs) that it’s new foods and allergens being rubbed there by little paws. We try to keep on top of keeping her hands clean, but with babies it’s hard. She will rub food in her eye in a flash. Hopefully this will clear up soon so that we can stop jumping at shadows.
As Michelle and I begin to look forward, we’ve begun to start new creative projects. Michelle has begun keeping a journal online at a site called ClunkyShoe (it’s a little joke we have), where she is writing about her experiences and thoughts on family and life, with less emphasis on disease.
I have been putting occasional updates on my old blog at evanz.org, however I suspect some of my time may end up going to another site called HLHForum.com. I’ll be writing more about it in the near future, but in short I’m trying to provide a place for parents, family and folks interested in supporting patients with similar disorders to meet, discuss information, and hopefully support one another. I don’t want it to be about any one child, hence a separate site from this one. Please feel free to take a look if you are interested, I’ll be trying to update it more when I can find time.
I’ll continue to update this site whenever there is new news about Zoe, hopefully every few weeks or on special occasions.