Faye Has a Helmet!

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.

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wichita family photographer: jill + family

This session is nearly a year old, yet it looks as though it could have been from last weekend. I shoot from the heart, and I shoot for how things not only actually look, but how they really feel, and love shared between a family will always both look and feel timeless. It’s not without effort. It’s not without pain and growth and off days and golden days. But this love is timeless.

I can’t wait for you to see this family’s afternoon together. It felt redemptive, and easy, and genuine.

And I think it looks that way too.

xo

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wichita family photographer: the winchells at dusk

When the sun is hot, and the mood is adventurous, and kids are into it, and there’s space to roam and run, and the connections are real and a’plenty, there’s yellow! Yellow is always happy. It all makes me happy.

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wichita family photographer: feeling fall on the way

I had a shoot last night that was the swampiest, muggiest shoot of the year, and as much as I’m not ready to say goodbye to summer and pool days quite yet, seeing the mums start to line the walkway at the grocery store and thinking about cooler temps and getting to see all of my beautiful families for sessions this fall has got me inching towards that autumn season giddiness.

One of the most GORGEOUS, kind, endearing families from last fall, below.

xo

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Planning Henry’s 7th Birthday with Basic Invite!

This post is sponsored by Basic Invite

My kids start talking about what they want to do for their birthday the day after their most recent birthday. The ideas change for the next 364 days, and so I just let them party plan to their heart’s content! It is easy to say, “oh, okay, yes you can have a piñata, and a jumpy jumpy house, and a strawberry cake, and fifteen other things,” when they forget almost all of it. Clearly I’m going to need to change my parenting strategy once they’re a bit older because I have a feeling they’ll actually hold me to all of these super special birthday wishes. But for now, when I have so much I have to say no to during our regular day-to-day, saying yes to these daydreams is my go to. 

So, when we started asking Henry what he wanted to do this year when he turned the big seven (HOWWWWW?!), he once again had one million ideas, and then had bit of a challenge pulling the trigger on his party theme and venue. 

I think I designed four different invitations on Basic Invite for him! The hands down best part of shopping for invitations on their site was the option to change colors with nearly unlimited color options on the designs. This made my designer heart so happy. It gave me the creative freedom to really customize his potential invitations with just the right colors. They had darling designs for seriously so many different events – wedding invites, baby announcements, shower invitations, birthday party invites, invitations with foil options, and seriously so many awesome unique graduation invitations – high school graduation picture invitations, trifold graduation invitations, unique graduation invitations, you get it! Way better than the basic, very lame graduation announcements I had when I graduated high school many moons ago.

Henry changed his mind at the last minute on the final details of his birthday, so I didn’t get to send out his paper invites. But you know what will be hitting mailboxes? Thank you notes on his personalized stationary! (This design with customized color.)  

Get 15% off now with code 15FF51! And let me know if you want Henry to send you some snail mail. He’s very into writing real mail and using all of my stamps.

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ABOUT US

"It's a feeling."

One of the best ways I've heard my work described.

It's like a dream you can't quite get back to, but you know was so so good because when you woke up you had a smile on your face, and you keep trying desparately to remember all of the vivid details you can be present in that in-between state for just a little more  - the warmth of being together, the sounds, the laughter...the feelings.

Here's more on what our work together could be.

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