Those are the words I've heard most the last couple of days. I've sat down and scribbled ideas and notes for the last 3 days trying to find the right words for this entry in the blog...I don't think I've really found them, but I feel like I need to get it going.
Before we ever found out about brain surgery, we found out about Effie's need to wear a scoliosis brace...I dreaded it even then, but after facing surgery, bracing was put on hold and my fears surrounding the brace hit a pause button too. We scheduled the fitting for early December thinking at least then it would be filed to insurance before the end of the year...that would be good for us since we have already met that great "maximum out of pocket" amount. When I asked the receptionist about filing it to insurance before December 31, she let me know that they can't bill until we receive the brace and it usually takes about a month to make them, so she didn't think we would get it on this year's benefits...that was a big bummer. However, we met her orthotist at our initial appointment, and after discussing with her, she scheduled us to return on December 29 to get the brace..she felt confident they would have it ready by then. Praise God for that because it really saved us a chunk of money...at least for now.
Lee is her orthotist. She carefully measured so many places at that appointment nearly a month ago, and with unbelievable technology and intelligence, Effie slipped into her light pink hard shell brace for the first time last week. The fitting was flawless, and after some trimming, some padding and some practice, we were headed out on the next leg of this adventure. I've had people ask so many questions about surgery and bracing...I think with the two diagnoses so close together, there were folks that thought her recent surgery repaired everything. Just to clear up confusion, the surgery she had in November was to repair a Chiari malformation and open up the area so that hopefully, her cerebrospinal fluid will flow more easily, and prevent the buildup of fluid within her spinal cord...the scoliosis was sort of put on the back burner until she recovered. The two are somewhat related, but that's a longer story. Now, we start to address the scoliosis itself. The brace is designed to put pressure on the two curves and attempt to help those curves become more straight and more stable. The hope is that the brace helps to slow progression...I don't think there's a lot of hope that the brace will actually improve her curve, but rather to slow down how much it continues to curve. It's a race against time as the higher degree the curve, the faster the curve changes...also against her, is that the closer to puberty she gets, the faster it changes too. Her brace is a Rigo brace...it's a newer design, rather than the traditional Boston brace. I don't know the reasoning behind why this one versus the other, except based on Effie's case, the orthotist worked with our pediatric orthopedic physician and decided this was the best option for her.
22 hours per day.
I don't think many of us have something that we have to do for at least 22 hours per day other than those involuntary actions of breathing and living, but starting this past Friday, Effie started the process of working her way up to 22 hours per day. I've searched and searched for information from families on what to expect with bracing. The basics are out there on scoliosis websites, but no real people advice to be found, so while many of this may not interest you, I'm going to do a 30-day "diary" of Effie's experience with her brace. I'll continue to edit this specific post and I won't re-share it each time, just so I don't bore you:) My hopes are that at some point, it will help some other family and little girl facing the same challenges.
From the very beginning, one of my biggest fears with bracing was the lack of physical touch when she's wearing it. We hug...we hug a lot. I think I've already told this story, but that fear started one morning when I went in to wake Effie. She always reaches up to hug me when I wake her up in the morning. The morning after we found out about the need for a brace, I went in to wake her and as she wrapped her arms around my neck, mine went around her little torso...her gown was soft against her soft skin...the perfect amount of squishiness:) As I felt her body in my hands, my eyes began to sting and I had to finish the hug with a quickness to sneak out of the room before the salty stream of a tear slipped down my face. I knew in that moment that once she had the brace, and had to wear it the length of time prescribed, that my days of feeling her body in my hands every morning were limited...sadly, I was right. We are two nights in to wearing it, and just this morning, she took it off, laid it aside and then quickly jumped back under the covers and said "now you can really snuggle me". She knows. She doesn't say it, but I'm sure she knows.
Effie was anxious to get her brace, and already she's handled it like a pro. She was so attentive when Lee taught her (and us) how to wear the brace. She will get it on lying down for now, but is told that she'll be flawless at putting it on different ways very soon. She saved some stickers from Christmas, and already the light pink hard shell of a brace adorns unicorns and glitter stickers. We've been supplied with some specially made undershirts to wear underneath the brace...so far, her normal clothes fit over the brace, although I'm sure jeans will be an adventure.
Day 1 - She chose to leave the brace in place as we left her fitting appointment - the plan for Day 1 was just 1 hour for the day. She made it about 30-45 minutes before she started to complain of back pain. She found it super uncomfortable to ride in the car, but the pressure on her curves by which the brace actually works, forced her out of it before the hour was up, she postponed the remaining half hour or so until later evening. She wore it that evening with little complaints, and was proud of herself for sticking to her schedule.
Day 2 - Eager that morning, she knocked the hour of bracing out first thing. She was near the hour mark before she started whimpering...we talked, changed positions and toughed it out. I dreaded the night, but it wasn't as bad as I thought it would be. She even woke up surprised that she slept most of the time.
Day 3 - The agenda for the day was two hours in the morning, two in the evening and to wear it through the night...the morning hours went by pretty quickly, but the evening two brought along tears and frustration...the minutes seemed to tick by as reality had set in that soon, she would need to wear it nearly every minute of the day. Nearing bedtime, she grabbed the brace and with a little help was all tucked into it. We all sat to watch a movie...she was up and down and just could not find a comfy spot. She climbed up on the couch with me and attempted to get settled...the hard shell of plastic laying on my chest. It's so hard to comfort her when she gets upset...she knows she has to wear the brace, so she doesn't ask not to...she does it, but she's frustrated by the magnitude of change that comes along with it. I laid beside her in bed this night listening to her moan and sigh as she turned over...I prayed the night would pass quickly and she would sleep well. It's New Year's Eve...she didn't stay awake to see it in, but I'm sure she would hope for a better 2018 than what 2017 brought along for her, yet I know that this is God's plan, and I remind myself that He knows best.
Day 4 - Again the night went better than I expected, but as I mentioned above, she couldn't wait to get the brace off for some real snuggling. She faced three hours this morning, then two for the afternoon, then again to wear through the night...she'll be wearing it every night from here on out. She's come to me several times asking "Can I have a hug? Because your hugs always make everything better." Each time, she's wearing the brace...needing some contact. Maybe it's such a midwife thing, but I worry so much about this lack of physical touch while wearing the brace. The hugs are hard...I usually wrap my arms around her body, but now that's replaced with a shell that she actually can't feel through...so I make sure I kiss her and rub her face. I'm wishing deep down that my hugs really did make everything better...I'm glad for her it soothes her for now. She started questioning me today on how long she would need to wear the brace...she knows it's years...she also realizes it may not even help. She asked to be tucked in early tonight because she just couldn't find a comfortable place hanging out in the living room with us. She has another week before she returns to school, but I worry about it already...removing and reapplying the brace for PE...going to the bathroom...getting frustrated, or just being in pain in the middle of the school day...some of the things on my mind. I know it'll be fine, it always is. I need a clone...because if my hugs really do make everything better...I need one.
Day 5 - "I just don't know why this is happening to me." There are times she doesn't understand why she has to do this...why anyone would have to do this. Morning and afternoon stretches of wearing the brace are starting to run together, and it's becoming more obvious that she will get little break from the new contraption. Sleep is ok...if you enjoy bedding down with alligators. I go back to sleep fairly easily, and I know that my being with her is giving her comfort, so it doesn't bother me to much, but if you require lots of sleep, be aware.
Day 6 - She woke to the morning and decided she would just leave it on through the morning. She is up to 17 hours per day of wearing the brace, and still handling it much better than me. A long bath seems to be her go-to when she wants to be out of it for a while. Thank goodness for that bath-bomb kit she got for Christmas:)
Day 7 - She came out of the brace for just a few minutes while eating breakfast then no complaints to put it back on. She did tell me she was able to go to the bathroom today while wearing the brace...when I asked her how it went...her response "terrible". We are up to 18 hours per day...only 4 more to go! I feel like there are less complaints. Tonight, though she laid down in my lap during a movie...the brace firmly laying against my thigh and causing some discomfort when I noticed she was asleep. I didn't move her until Matt could pick her up and tuck her into bed. I just cannot imagine how uncomfortable it is to wear the brace...tough girl for sure!
Day 8-9 - She doing pretty good...up to 21 1/2 hours per day. She's still restless at night, but not waking up like she was before.
Day 10 - We saw her neurosurgeon and her orthopedic specialist today. It went well. The neurosurgeon said she had no restrictions, but then she asked him about the trampoline...that was a firm "no". He didn't really mean "no" restrictions, but he promised they would TALK about it when we see him back in May. That was good enough for Effie. At the orthopedist, there is no real change in the curve since October, and that is good news for now. We see him back in six months for another x-ray, then if there are any changes, she may need her MRI sooner than November.
Day 13 - Effie doesn't wear the brace when she's practicing or playing guitar, honestly, she just hasn't found a comfortable way to do it, so out the door on the way to guitar lesson, she forgot her brace. We were headed to Perry, GA for an archery tournament just after that, so she got a free pass for extra hours. We didn't make it home until close to midnight, but she gladly buckled herself back into it and went right to sleep.
Day 18 - GET OUT OF JAIL FREE CARD---Snow day out of school and we spent hours outside and sledding, as snow for us is a rare opportunity. It wasn't until the afternoon that any of us really noticed that she didn't wear it all day. Honestly, had I noticed, I probably would have given her a pass to be out of it while were sledding and playing, so no harm done. After she showered, she was back into it and right back to the routine. Effie knows the brace is part of her life now, and whatever she does has to include at least the thought of the brace. I know, though, that life and playing is important too, and sometimes it's just going to be ok for her to be the regular brace-less kid she was before all of this...snow day was that day.
Day 22 - Exercise is another way Effie can forego the brace...on this day, she biked trails and ran track...a little extra time that really counts as brace time, but isn't really. I told her it won't be too long and she'll be begging me to go on extra runs, just so she can use it as core-building time. She's not able to build core strength while in the brace, so out of it and exercising is accomplishing something that she needs to do too.
Day 23 - This morning around 2 a.m. Effie came to my room and asked me to come sleep with her...she had a bad dream and wanted me closer...how can I say no to that, so off I went:) . Around 5:30, I woke up and asked her if she wanted me to snuggle her for a little bit...she didn't speak a word, and all I heard was the pulling apart of velcro while she quickly escaped the brace. She quickly nestled right next to me. It just goes to show how much our children need our physical hugs and love:)