It’s been a while since we’ve posted so I may try to cram a bit in this post. The brief version is that a couple weeks ago Havyn got her cast off. We took the family to Sevierville, TN and where we had some quality family time and Havyn got to swim to her heart’s content. Right now we’re in Cincinnati where she’s getting an MRI and a new cast.
If you want to hear more about our escapades and see a few photos, read on.
Removing the cast was fun. Really. It actually was! We didn’t really want to take a trip all the way to Cincy just for a two-minute cast removal, especially since the surgeon wouldn’t even see her at the removal. When we spoke to the nurse she said we could get it done in Louisville or that we might even want to tackle it ourselves. She (who shall remain nameless) let us know that she wasn’t supposed to say anything but that there were Youtube videos we could watch. This seemed like a better plan. If we could spare her the anxiety of another doctor’s visit and have a fun project at the same time, well that’s a win-win! So I watched the videos. All of the people use tinsnips which didn’t seem like the best idea to me. Cast saws are just vibrating saw blades that cut hard materials but don’t hurt skin. So I got out my oscillating tool with a saw blade and it was perfect! Just like a cast saw, minus the built in vacuum. So we set up shop in the driveway. Amelia and Henry operated the shop-vac while I carefully cut the cast. Havyn didn’t freak out a bit and it was off lightning quick.
The first thing she did was to start up with the scratching. I can’t imagine how good that would feel. Her skin was dry and flaky but there were no sores under the cast. There was a random safety pin (closed) that had gotten stuck down in there, so that was neat. And oh… to hold her again! To wrap my arms around her and feel her… what a precious thing! That obnoxious cast, as grateful as we are for it, sure makes snuggling with your baby girl pretty tough.
Tennessee was a blast. Mamaw joined us for the road trip and we packed 4 days full of fun. The place we stayed had a a couple pools and water slides which we spent plenty of time in. We also ate out a bunch, rode mountain coasters, panned for gems, visited WonderWorks, and, of course, enjoyed the Dixie Stampede. See the end of this post for a bunch of photos from the trip.
Fast forward to this week. We got news late last week that our good friend Shelli Armstrong lost her battle with cancer. Tammy, Havyn and I left Tuesday morning to drive to gorgeous Fort Recovery, Ohio for the funeral. Afterward we trekked back south to Cincinnati. Havyn got her choice of dinner. We knew the answer before we asked the question. “Chips & salsa!” This girl would eat it for every meal if she could. There is little she loves in life more than chips and salsa at a Mexican restaurant. Then on to the hotel – we booked a place with a pool so Havyn could enjoy just a bit more water time before her cast.
Her appointment was this morning at 9:30. MRI first, followed by the cast. A few months ago, Havyn had very little anxiety and was almost excited about getting a cast. Today was a different story. Even though she barely complained the whole time she had her cast, this couple weeks of freedom have spoiled her. I can’t blame her a bit. But she soldiered on. This was the first time for sedation that Tammy and I have been able to be with her when she’s gone to sleep. They have an “induction room” here where we’re able to hold her hands as they give her the sleepy gas. I’m not sure if it’s harder to watch them wheel your waking daughter down the hall or to have your daughter pass out in your arms.
And now we’re trying to patiently wait. She’s still in MRI (more than 2.5 hours) and they haven’t started the cast yet. We’re not sure what’s taking so long with the MRI but they are assuring us that everything is just fine. Typically in Louisville (where her previous MRIs have been) she’s been done in about an hour. Hopefully she’ll be done soon and we’ll be out of here before too awful long. We’ll post again when she’s done.
A few random things:
- We had a gathering a few weeks back with other families in Louisville affected by NF-1. We had a good time connecting. It’s nice to hear from others who understand the journey. Thanks to Gilda’s Club for hosting us! We’ve said it before, but we believe strongly that part of the reasons we endure what we do in life is so that we can help others in the same situations. We like to say that we all have “mud.” Whether it’s cancer, divorce, depression, unemployment, or anything else, we’ve all get stuck in the mud. We can look down at our own feet, staring at our mud, wallowing in our pity. Or we can lift our eyes up and see that there are others in the mud with us. Maybe we can get through this mud a bit better in the community of the other muddy people.
- We have a new friend to tell you about and to invite you to pray for. Her name is Emily and she’s is as sweet as can be. She is 4 and has an abdominal tumor. Havyn first met Emily in the hospital at the end of February. We’ve since seen her a few times during chemo visits. She gets chemo every day for a couple weeks at a time. Every day. Her dad, a single dad with FIVE kids, faithfully brings her down every day. She and Havyn has become buddies and we try to pray for her often. Will you join us? A week ago I was scrolling through my Facebook feed (a rare thing for me) when a post from a new friend Elizabeth popped up. I found Elizabeth when I was searching for people affected by NF-1 in Louisville. She lives in town and works at a Speedway gas station. Here’s what she posted: “So there is a little girl that comes in my store every morning with her daddy before her chemo treatments. She’s no more then 4 ! 🙁 yet EVERYDAY this baby is smiling. Her daddy always looks so tired! So I’m going today to get her some coloring books and such to give to her tomorrow when she comes in. She has chemo again tomorrow. Anyone wanna drop off some coloring books or markers to me today or tonight let me know. I’m going to grab some other goodies for a gift bag and maybe a gift card for dinner some where” … It could be only one girl! I got in touch with Elizabeth and filled her in on what I know. And Elizabeth has run wild! She surprised Emily with a bunch of gifts. And she’s been busy collecting gifts for dad and the other kids, too. And not just toys… things they need like toiletries, cleaning supplies, shoes, gifts cards and more. Elizabeth, you are truly an inspiration. You have your own mud but are willing to take time to help someone else with theirs. Thanks for helping out this sweet family!
- While you’re praying, add Alyssa to your mix. She has leukemia. Havyn has met her a couple times while getting chemo. What happened a few weeks ago was the most precious sight. Havyn was dealing with an abnormal amount of anxiety and Alyssa came to the rescue. She offered to hold Havyn’s hand while she got her port accessed. Then Havyn returned the favor for Alyssa when she got her blood pressure checked.
- Brief update here… I’d go back up and edit the rest of this post, but nah… you should get rewarded for reading this far. We just got called back and Dr. Sturm talked to us. Havyn is all done and they are waking her up now. We should see her soon! She did well. No MRI results yet but we’ll share those when we get them.
Alright… thanks for your continued prayers for Havyn. Your prayers and encouragement are what keeps us moving. We appreciate you so much! Here are some more photos!