I forget that not everyone knows that until we see someone we haven’t seen in a while (the last three months), and there’s a quick surprised/puzzled/confused moment, followed by an even quicker recovery lol. You guys, it’s okay! I probably should have posted something weeks/months ago, and meant to…but life.
Also, talking about hard things is hard.
If you want the short story, Faye has a helmet for a flat spot, and we are so incredibly grateful helmeting was finally determined to be a viable option for her because there were many scary things like CT scans, and road trips to Children’s Mercy in Kansas City and talks of a major invasive surgery in addition to hours of appointments and physical therapy that got us to this point.
The beginning of the long story starts back when Faye was just a few months old (I think?) when I noticed her forehead slanted out towards the right. I brought it up at her four month appointment, and our pediatrician also noted a flat spot on the back right side of her head, most likely because she preferred to sleep towards the right. I diligently turned her head to the left when she slept, but at her six month appointment her head still dipped in significantly over her left eyebrow and gradually slanted out to the right still so we were referred to a plastics specialist from Children’s Mercy that traveled to Wichita throughout the month.
I went into that appointment trying to prepare myself for a helmet recommendation and came out with a likely craniosynostosis diagnosis and a CT scheduled in Kansas City to confirm that one of her sutures had pre-fused.
The next few weeks were awful; I couldn’t sleep, I spent way too much time googling images and medical journals and hospital websites trying to educate myself as much as possible, but also trying to compare images I found with my sweet baby’s head. I had to cut myself off from the internet because sometimes knowledge is power, and sometime knowledge tells you too much about massive surgery cutting your baby’s head open, likely blood transfusions, etc. There were many, many nights when I would nurse Faye to sleep and the be up for hours panicking about her precious head and thinking about her head being cut open from ear to ear. I found praying for Faye and also praying for peace for Andrew and I calmed me the most.
Andrew and I took Faye to Children’s Mercy at the end of March armed with a lot of faith and a bunch of prayers and good friends supporting us and checking in. She rocked her scan, and we saw the same plastics specialist from Wichita a bit later that day. He believed one of her sutures to be pre-fused. However, he wanted us to try and get in with his partner that afternoon since his focus was on other facial corrections (cleft palate, for example), and Dr. Goldstein did handled many more cases with craniotomies. I was devastated and in denial and so glad we could see Dr. Goldstein immediately.
Dr. Goldstein and his nurse were both wonderful, and as he reviewed her scans he noted the spot that Faye’s previous surgeon had seen, but for her age, that suture was supposed to begin fusing. He honestly felt like her flat spot was caused by tortocollis, and that aggressive physical therapy would help. Clearly, Dr. Goldstein was our favorite person that day.
We set up physical therapy through Rainbows United, and they came to our house all summer long working with Faye to loosen up her neck muscles. We also went to Greenleaf Chiro in Delano for cranial adjustments, and checked in with Hanger Clinic to discuss helmeting. No one felt like helmeting was a clear answer. The front location of the flat spot was really puzzling. It’s not common…at all. It was discouraging, but throughout the summer we just kept at it, and her head shape improved ever so slightly. (When Hanger measured her originally her degree of asymmetry was an 11, and she moved down to a 9.) But most importantly, her head had grown AND grown proportionately. Our contact at Hanger felt like helmeting would help. This was the BEST news! We had a follow up at Children’s Mercy the following week, and Dr. Goldstein had hoped her head would have improved more, but she was still cleared from needing surgery. Praaaaaaise.
And so, we picked up Faye’s pink helmet the weekend before we left for our family vacay to Colorado, and she’s been in it all day, every day since.
A month ago her degree of asymmetry had moved down to a 6(between months 0-1), so we’re pleased with her progress, and very thankful for this very expensive piece of headgear. Ha.
We actually have a follow up with Hanger this afternoon, and I’ll be honest, last month was a bit discouraging because there wasn’t any significant movement between months 1 and 2. I think we’re either going to see signs of continued movement orrrr if we don’t, need to accept that she’s just always going to have a slightly sunken forehead on the left side.
Thank you, thank you, thank you friends and family that have been praying for us and helping share our trials. I’m soooo ready to have this behind us, and equally thankful that her story didn’t include surgery or further complications.