Sunday, December 08, 2013
And it's not just the time at work. It's all the things I did during the day when I was self employed that I now have to do after work hours, like opening our mail, paying bills, making appointments for haircuts or the doctor, calling the insurance company when there have been issues (I still have to deal with our insurance claiming the Children's Hospital is out of network), talking to my mom or friends, talking with my husband, sitting in front of my SAD light (this one worries me--I have to get up 30-45 min early, and early mornings & me don't go together, yet). The smart thing to do would be to go to bed early, get up early, do the household bills & computer stuff while using my SAD light (like I am now).
It's going to be an intense new normal for a while.
But then I remind myself that millions of women work 40 hours a week and manage to someone get everything else done. They may be frazzled, crazy, out of control women some days, and I know I will be too, but they manage.
I've spent the last few days getting my house ready for the New Normal. I cleaned out our kitchen closet, which housed the kids craft projects and school supplies--4 shelves of stuff that has accumulated over the past several years since the last time I cleaned it out. I filled 4 big garbage bags and put everything in bins (as opposed to cardboard boxes or shopping bags); now we can get to what we need easily and all the junk is gone.
That allowed me space to move my scrapbook supplies--of which there is a ridiculous abundance--to the top shelf and off my desk in the front room. I mourned the incomplete albums and photos I haven't done anything with while I relocated them. I have no idea when I'll get pictures sorted and put in albums. Someday.... (code for never). And now I have a desk ready to take care of all the household stuff at home instead of at work. It took me all day Friday and was totally worth it.
I keep telling myself, the busier and more active I am, the busier and more active I'll be. An object in motion stays in motion. I have no idea when I'll fit in exercise. I haven't fit it in for months. Now when will I do it?
Just like with Sophie's surgery, the anticipation is probably way worse than the reality will be. So many unknowns, and I don't do well with unknowns.
Sophie is doing incredibly well. Everyday is better. She can get in & out of bed and in & out of the car without hurting herself. She can do everything herself except pick things up off the floor (she uses her feet a lot and tries, though). She met with her homebound teacher twice last week. Since the first several rough days at home, it has been fairly smooth and easy.
Thursday's follow up visit to St Louis was cancelled. We were 20 minutes out of town when the nurse called & said the sleet and ice had already started and we should probably turn around. I wanted to just go ahead and risk it, but my wise husband told me to turn around. Glad he did. Getting there probably would have been fine, but coming home would have meant driving through a wintry mix the entire way.
So Tuesday, Mark is taking Sophie to the appointment. This does not sit well, but I have no choice. Can't very well ask for a day off on my second day of a new job. I will make a list of questions, prep him on how to get to the office, and let it go. It will be fine.
It's all going to be fine.
Sunday, December 01, 2013
Everyday has been a big leap forward.
She's basically completely self sufficient now, with the exception of
tasks that involve bending over, which aren't a lot, and carrying or
lifting anything over 10 pounds. She still has pain and is taking
Meds, but can go for longer periods without them. She even went to
the craft store yesterday with Mark to get supplies to keep her busy.
I've been ok food wise, but haven't left the house since we got home.
I've read three books and watched Christmas movies with the family.
It's been necessary to do a lot of nothing, to recoup from the
Out friends have brought us dinner every other day. It's been a life
saver. Mark has been cleaning the kitchen and spending time with both
kids, totally engaged. Which is good since I've been mostly checked
I didn't gain any weight the week of the surgery. Weighed 154.4
yesterday. I ate a lot of starchy comfort food at the hospital but
never dessert and not between meals.
I'm teaching Sunday school in the morning and will get back to normal
chorea tomorrow. I'm not officially working this coming week, but will
need to go into the office a few hours. Mom will stay with Sophie
while I'm gone.
New job starts in a little over a week. I'm nervous. Not thinking
about it much yet. Trying not to worry and just deal with today.
I'm so incredibly thankful it has gone so well. We go to St. Louis
Thursday to see the surgeons nurse for a follow up and X-rays.
Wednesday, November 27, 2013
and out of the car was brutal (we took my Mom's Dodge crossover car,
since it has a 3rd row--seat pretty high and I didn't bring a stool to
help her get in). I brought a twin sized foam mattress pad and folded
it lengthwise to put under her in the car. At least that worked. But
getting in and out hurt her horribly. We were supposed to stop 3 times
and let her walk. We stopped once because the wind was cold and
strong. Once was too much. It hurt her worse than if she'd just sat
for 3 hours and got out at home, even if that would have made her
Finding the right place to sit when we got home was impossible. She
has to be straight up and down or lying flat or on her side. We tried
sitting and lying on the couch--firm cushions on bottom but soft back,
and even with pillow behind her it didn't work. I didn't think of
using our rocking chair until this morning.
Her bed is fine and even though it's high off the floor (step stool I
have is too high), she figured out how to scoot without hurting too
much. She slept all night -- lots of pain Meds still.
She's been on and is still on sennakot S and miralax. Still
waiting..... I know it's something to be careful of. We may have to
use a suppository soon.
We borrowed a bed side toilet from my grandma. Also a very smart thing.
This morning I figured out how to use our rocking chair, by wrapping a
section of the foam mattress pad around the back cushion. It's the
correct up-right angle and has arms. And put it in front of our side
table by the couch, which keeps the chair from moving. She can get up
and down by herself.
She can lie in our bed and watch tv. She can't lie on the couch yet.
Still too sore and muscles dodgy to adjust on it easily.
Reading is hard because of the pain Meds making her eyes not focus
well so no reading yet. She's already bored and it's only day 1 at
home. But it's only day 1. She'll keep healing and be able to do more
Luke went to school today. So it's just been Sophie and me. We've done
I'm tired and haven't even taken a shower. Very fried and feeling the
stress let down, semi-depressed. Worried how things will work when I
start the new job Dec 9. Praying she's mostly ok by then.
Friend is bringing dinner tonight and another friend bringing dinner
tomorrow. Our friends set up a meal train and are bringing dinner
every other day for 2 weeks. My mom went grocery shopping for us last
That's about all I can write for now. Happy thanksgiving!
Tuesday, November 26, 2013
hair washed and a few other things, so a few more hours.
She's doing amazingly well. The pain doc said she's the best patient
she's seen in a long time, as far as how quickly she's recovered and
her general attitude.
Busy so have to go. But great news today.
Monday, November 25, 2013
Progress already today.
Sophie sat up again and stood for the first time for the surgeon at 6 am. She later sat in a chair for 30 min.
She walked with her PT's help to and from her door.
She ate French toast for breakfast, her first food since last Wednesday.
Her drains are out (she had 3 to drain away excess blood), catheter is out, dressings removed, no more IV bags--she's now completely unattached to anything.
It is still very painful to move. The pain team has been tweaking her Meds and they have a schedule that will hopefully manage it well enough (can't take all the pain away).
She has a lot of work ahead of her but she's doing amazingly well. Ever the trooper.
Doubt that we leave tomorrow. My guess is Wednesday at the earliest. Depends on her ability to walk on her own and her bowel movements.
I slept at the House last night. Rough evening with my mom. Her behaviors are frequently examples of those I hate in myself, and having her here is a learning experience for me on how not to behave.
She chose to stay at the House with Luke this morning, which was a great idea because we needed a break from each other (although she would never admit she needs a break from anything, or needs anything at all--one of the things that I'm tired of, her martyr attitude). They are riding the shuttle to hospital late this afternoon.
Sophie will be standing and walking today. Lots of work and it will probably be a tough day.
Sunday, November 24, 2013
good. She sat up this morning with help from PT and nurse. It was very
painful but she did great. We're waiting for orders so she can start
clear liquids. She's only had ice chips and water and is asking for
food, which is a good sign but has to go slow.
I was the only one in the room when she sat up. I was stoic and
contained, because she doesn't need me freaking out, but after she
fell asleep I had a little breakdown. There's a reason I don't cry
when the crisis is happening. When I start it's hard to stop.
BIL got in last night at 1:30 am. Good he's here. She's been awake
talking with us for the last hour+. She's off the dilaudid (which was
the pain med in her button) and has a 12 hour pain pill and a 3 hour
pain pill, as well as a muscle relaxer. I think the change in Meds is
helping her stay awake.
Here's a pic. She looks so good! It's a relief to see her like this.
Saturday, November 23, 2013
gave her Meds to bring it up. Weaning her off them now. When her
pressure is stable the PT will have her stand up. We can't move out of
ICU until pressure is stable. They said BP dropping is normal for her
type of surgery.
We do get to be with her all the time, ever since she was in recovery
after surgery. Even Luke can see her in ICU. She has her own ICU room
which is awesome.
Mark stayed in ICU last night. He did sleep some. He'll nap today.
Mom, Luke, and I went back to the House and we were all in bed before
9:30. I took a Xanax and slept until 7 am. Feeling good.
My brother in law is flying in tonight from Colorado to visit. It's a
surprise but welcome. He's good with Luke. It will be good for
Mark--they are very close. Jeff and Mark and Luke will stay at the
House tonight, and mom and I will sleep at the hospital. We plan to
trade off every night.
I know it's going to be rough when they start moving her. So some
difficult times ahead. I'll update as often as I can.
Friday, November 22, 2013
1 pm already. Loooong day ahead of us.
Sophie hasn't eaten since Wednesday night. She was ok yesterday until
the late afternoon when her energy crashed and the dressing on the
picc line started itching and burning (sensitive skin--prob just
adhesive irritating it, wasn't blistering or anything). I gave her
Benadryl and Tylenol, she slept a few hours, woke up for a couple
hours and watched tv, then went back to sleep around 9. She slept all
night till 5 am. We kept her well hydrated yesterday. So it went
pretty well, considering.
The place we're staying is called Haven House. I think it's an old
nursing home that's been converted to a hotel-like place for families
of hospital patients. The rooms are huge with private baths. They
serve breakfast and dinner, there are several family rooms with couch
and a tv, a gymnasium. Each wing has its own washer/dryer, full
kitchen, and family room. It's clean and homey.
Our pastor drove over this morning. He left at 3 am and was here to
see Sophie at 6:30 am. Totally unexpected and a huge blessing to us
We have a private waiting room on the surgery floor. The hospital
really does a great job taking care of families and siblings. My mom
and I took Luke to the play room on the lower level. We could even
leave him here, like a day care, if we needed to. He's paying the Wii
There's a Ronald McDonald family room at the hospital where you can
shower, wash clothes, has snacks and drinks for no charge. Each
patient floor has all that too, but this is smaller and a little
nicer. The lady there said their showers have hotter water than the
hospital's showers. :)
Sophie will be in surgery until 2 or 3 pm. Then the ICU all night,
then moved to the floor on Saturday. She'll have drains in her back
and a bladder catheter until Monday. The surgeon's nurse said she'll
probably go home Tuesday.
So that's everything so far. I'll post more when I can. Thank you for
all the prayers.
Thursday, November 21, 2013
Wednesday, November 20, 2013
The card is one of the long photo cards, and here's the 2nd pic:
Thursday, November 14, 2013
We are taking Luke and my mom with us. They'll probably stay through Sat or Sun. I don't want him missing too much school or going too stir crazy. Sophie will probably get to go home 11/26 or 11/27.
My mom being with us so much is causing me some anxiety. She hovers, she has OCD (like I do, so I get it, but she doesn't really understand that she has it and doesn't even attempt to reign it in), she is probably one of the most negative people I know. She drives Mark nuts. The fact is, though, I need her. I need her help with Luke. I'll need her help with Sophie when I start the new job. I'm going to have to take lots of deep breaths, repeat the serenity prayer constantly, be very patient, and figure out how to help Mark deal with her (of course, he's a big boy and is going to have to figure it out for himself, too).
Sophie's spine continues to move a lot. Her ribs on the right side are getting closer to her hip bone. When she lays on her left side, she can feel her rib close to her hip. She's having more pain/tension in her back. I am so so so thankful we are getting this done now.
I'm hanging in there, but I am feeling the late fall funk (using my SAD light but it only does so much). I have had a lot of intrusive thoughts in the past month; I think stress stirs them up. I met with my psych nurse practitioner on Monday to see if a medication change would help. The meds she thought would help these OCD thoughts (zoloft and luvox) are ssri's and cause weight gain. Luvox has other crazy side effects, like magnifying the affect of caffeine, and I am so not giving up coffee. And I'm not taking another SSRI that causes weight gain. Anyway, I'm keeping my meds the way they are and just trying to deal.
Re: insurance. My new job's insurance doesn't kick in until 30 days after my start date, on Jan 9. That was going to mean either we have health insurance exchange coverage for 9 days (assuming we could even get signed up for it) or we go without insurance for 9 days (which is really not an option). BUT. I got a letter yesterday from the state health insurance plan that they are extending coverage until the end of January. This is a HUGE load off my mind. I don't have to worry about struggling with healthcare.gov or struggling to cancel on Jan. 9 and hoping they'd refund 21 days of not using the insurance.
Re: new job. Anxious and still feels completely weird that I'm going to be working somewhere else. I don't know my schedule yet other than the first week. It's not an 8-5 Mon-Fri job. I'll have to work a night or two and some Saturday's from 9-1. Until I'm trained, I'll be working when my manager or the other FA is working so I can shadow them. Primary issue with the night time work is that I'll probably have to give up my Monday OA meeting or Thursday choir. I can't have more than two late nights a week. But who knows. Weeks I work on Saturdays, my manager said I won't have to work an 8 pm night. If I can get a 7 pm night on Monday or Thursday, I can still go to OA/choir, and just be 15 min late. We'll see.
We are putting up Christmas decorations this weekend, since Sophie wouldn't be able to help after her surgery. That should be fun. And the house will be cheery when we get home from the hospital. We obviously aren't going anywhere for Thanksgiving. We always are with Mark's family, and this year it's in Indianapolis (sister in law and niece in law live there). It's disappointing we'll miss everyone, but that's life. My friend Amy is going to bring us dinner, which is awesome. She's in OA too and knows what I can eat.
My food is still not great. No binge-foods but still way too much processed, convenience foods. I've screwed up my taste buds, I think, and I've definitely gotten in the lazy habit of not cooking. This isn't a great time to be making major changes, so I'm working on making small ones. I haven't carved out time to exercise either. When the heck I'm going to fit that in after I start the new job, I have no flipping idea.
Anyway, I'm ok, not fabulous, but not in a pit. I'll post after Sophie's surgery to let you know how she's doing. Thank you all for your prayers and positive thoughts for her. They mean a lot!
Monday, November 04, 2013
My start date is Dec. 9. They were willing to wait for me until after Sophie's surgery.
I'm swamped at work and don't have time for more details. I'll post more soon.
Thursday, October 24, 2013
She called me this afternoon and asked if I could meet the campus president tomorrow (Friday) at 3:30. He's over this and one other campus, so he's not here all the time, and they are squeezing in the interview when he's here for tomorrow's graduation (they are on quarters).
We also discussed a start date. I explained about Sophie's surgery at the end of yesterday's interview--how I wouldn't be able to start until mid December and they needed to know about that so they could factor it into their decision making process. They both said it wasn't an issue.
So, they are serious.
I'm nervous. I'm excited. I'm totally freaked out.
I'm worried about Mark and how this will affect him. I'm worried about how it will impact the kids, since I will be working more hours and will have to travel for training several times in the first few months, and my schedule will not be flexible like it has been the past 8 years.
I know, I know, I know it is the best thing for our family.
AND, I mean, duh, I haven't even gotten the job yet! So I'm borrowing worries. But it feels like I will be getting an offer by next week. All this stuff is rolling around in my head, like my stuff always does.
We'll see. If you're the praying kind, please say one for me. I know God will work out the details. I have to trust Him.
Tuesday, October 22, 2013
Sophie's surgery is scheduled for 11/22. We met with the doctor again on Monday 10/14. Based on the measurement he takes of her hump when she bends over, it had gotten worse in between our visits, which was 2 weeks. The Feb 28, 2014 date wasn't okay with him. Even though children's hospital's schedule was booked through 2013, they moved things around and got her in. This is good news--we want to get it done so her spine doesn't get worse and he can keep the rod from going to far into her lumbar spine(he plans to put in the rod from T3 to T12 or L1). And at least I know the our insurance will cover everything through the end of this year.
I am looking for a job. Even though it's far, far from ideal, and even though we know it will hurt our perception with clients and make work really challenging for Mark, it's a reality that we have to face--we need more reliable income and we need employer sponsored health insurance. Health care reform still isn't affordable, which we'd been pinning our hopes on. The 80/20 plan will be $1300/month. That's about $500 less than we pay now, but still way more than we can afford to continue to pay indefinitely.
I have put in my resume with 8 different companies. I've had one phone interview, with a follow up face to face interview tomorrow. It's not very promising out there.
The last few months have been ridiculously challenging financially. So there's that additional burden. And Mark's back procedure has worn off (this is degenarative disc disease, facet pain--no amount of PT can help this issue), so his pain is back in force. Today we learned his procedure that was scheduled tomorrow has been postponed because insurance has to review it further. I called the insurance company; nothing we can do to speed it up. He's in serious pain and his pain meds aren't touching it. He's at work, but I can't imagine how hard it is for him right now.
Seriously, I don't know how much more either of us can bear. I am praying. I see God's hand helping us and guiding us (like Sophie's date being moved up, and finding a place to stay in St Louis that won't cost an arm and a leg for the week we're there). But there is SO MUCH, and SO LITTLE I can do. It's hard to just let it all go and trust it will be okay, when things seem so far from okay.
It really sucks to have to be going through all this. I am not eating well. I'm not exercising. I am not eating binge foods and I don't snack during the day, but I am eating before bed and I am eating too much on the weekends. I am not working my program like I need to. I'm slowly gaining weight. More suckage.
I am talking with my sponsor. And I also had a girl ask me to be her sponsor at last night's meeting (I was stepped up to sponsor a few weeks ago). So I sure do have a reason to start working rather than coasting.
It could be much worse. I am not in the depths, just very overwhelmed and scared and anxious.
It has to get better soon.
Thursday, October 10, 2013
the silence, and thanks, Vickie, for checking on me.
Feeling very overwhelmed lately. Surgery, insurance, work, finances.
More than I can write about now. But it will all be okay. I'll write
more next week.
Monday, September 30, 2013
X-rays done on a machine that is low radiation and takes back and side
at the same time. There are only 5 machines in the country. Pretty
Sophie's play was this weekend. It was wonderful. The best they've
done. She looked beautiful. And so grown up.
Thursday, September 19, 2013
I have been thinking about a question my sponsor asked me last week.
What brings you joy?
I sat like a deer in headlights when she asked. I racked my brain---what do I DO that brings me joy?
Shouldn't I list things like...
Working in my garden (which I do not have)
Painting beautiful landscapes (which I cannot do)
Volunteering to feed the homeless (which I have done several times in my life, but not regularly)
Sailing, hang gliding, mountain climbing, ocean swimming (none of which I can do because I live nowhere near mountains or oceans or cliffs)
...and on and on, the more romantic and etheral, the better. Right?
When we talked, I was having a really off day. SAD was starting and I felt just plain flat. I said things like my family, reading, watching movies, running. But I felt an utter lack at not being able to instantly rattle off a list of JOYtivities.
So after thinking about it for almost a week, I'm writing about them now.
What I came up with...
Spending quality time with my family (although the quality of our time together lately has not been joy-inducing; we need to work on that)
Running and running races (um, so, why aren't I running?!)--guilt, not joy around this one right now, but there's hope in acknowledging that yes, running brings me joy and if I want joy, I need to go running!
Reading. Love love love to read. Joy vicariously through the lives of fictional characters.
Watching movies together as a family (more so at the theater. we watch a lot of movies together at home, and sometimes there's joy, and sometimes it's boring and I read while they watch a movie)
Watching Say Yes to the Dress with Sophie. This has become a weekend favorite for us.
Shopping with Sophie for clothes (which we did yesterday at a consignment shop, and it was great fun for both of us)
Snuggling with my boy. Luke means "light" and that child is a ray of light every time I get near his sweet little self.
Listening to Luke read to me.
Connecting with my husband on a level of friendship and awareness that I only share with him. I'm not talking about sex (although, thankfully, there's still joy there). I'm talking about the fact that he knows me better than anyone else on the planet. Knows me better than I know myself somedays. When I stop and appreciate the relationship that we have--regardless of all the usual issues that are inherent in a 20 year relationship--I am filled with joy. He adores me. I know he adores me. What more can a girl ask for?
I know I can come up with more, and I probably will. But that's all I have time for today.
One thing obviously missing here.... FOOD. A year ago, I'd have listed eating ice cream. And baking cookies. And Thanksgiving pumpkin pie and Christmas chocolate pie. And chocolate.
While it's almost a food, I don't feel bad about adding coffee to the list. Coffee brings me joy, every single morning.
Wednesday, September 18, 2013
Monday and today were cloudy and rainy. The days are much shorter. SAD has descended swiftly and in force.
It's like a switch gets flipped in my brain, and viola! the joy is sucked from my body and soul. My body feels like I've been moved to a planet with an extra dose of gravity. I'm fragile, on the edge of tears or anger or verge of collapsing in a heap of uselessness.
Hormones are also playing a part right now, so I've got a double whammy to deal with.
I write this sitting in front of my SAD light, later in the day than I should be in front of it, but I couldn't get moving this morning to get ready for work and got here late, and my light is at work because it's where I'm more likely to use it regularly. It's very hard to dedicate 30 minutes in the morning at home to just sitting still when mornings are so busy and I usually sleep as long as possible. Ideally I'd have two lights (one for home on mornings like this), but they are $300 so right now, it's one light and it's at work.
A note on sleep: I stopped taking sleep meds about a month ago. For whatever reason, I found that I can get to sleep and mostly stay asleep on my own now. That was not the case previously. I did have many, many sleepless nights before I started taking xanax and later trazedone to sleep. I talked about it being an issue every time I met with my nurse practitioner who prescribes my meds. Whatever the reason, I'm thankful I am sleeping okay and not drugged in the morning.
I read a Bible verse this morning in a devotional that offers some comfort:
"Do not fear, for I have redeemed you; I have summoned you by name;
you are mine. When you pass through the waters, I will be with you;
and when you pass through the rivers, they will not sweep over you.
When you walk through the fire, you will not be burned; the flames
will not set you ablaze" (Isaiah 43:1-2).
It doesn't say "when you pass through the mud," but I can extrapolate to that metaphor and take comfort in what God is telling me through Isaiah.
I am also eating more, which happens when I feel like this. And still not running. I know I can and will turn things around soon. Mark has been unavailable to help with the house or kids for the last month because of a big church project, which wraps up this Saturday. He and I are going to work out a schedule so I can take more time for me (and he for himself), starting next week.
I already feel better just writing all this out and having sat in front of my light for 40 minutes.
Regarding Sophie & the chiropractor:
She had a neurological exam by the functional neurologist chiropractor (Dr. Shaun) last Friday. Neuro exam involves such things as closing your eyes & touching your nose with your pinkies, closing your eyes & reaching out your arms in front of you & lifting your knees high, resisting push/pull on your legs and arms, flopping your hands back and forth over & over on your lap. Sophie had trouble with them all.
The doctor found that she has significant right side weakness. I watched as she couldn't keep her balance during the knee lifts, had trouble finding her nose with her pinkies, had trouble keeping a steady rythm with her hands, couldn't resist push/pull with much strength. He thinks she has left brain damage in her cortex and cerabellum.
He asked if she'd had head trauma in the last year. No, I said, but she was in a car wreck in April 2011. The impact was on the front passenger side, she was in the drivers side back seat. Her head would have been thrown to the left. A light bulb went off for the doctor and for us, realizing that the accident did more than give her a chest contusion (bruise that was found on a CT scan in the ER after the wreck).
He said the wreck could have also caused trauma in the myofacial tissue in her spine, which could have exacerbated the scoliosis to progress so quickly. The doctors we've talked to have all been shocked or disbelieving it moved from nothing (or next to nothing) at her 2012 checkup to a 50 degree S curve in a little over a year. The theory that the accident accelerated (or caused) the scoliosis helps explain the rapidity of the movement. He asked for a copy of the CT scan from the ER, so he could look at her spine and see where it was then. I gave it to them Monday, so we'll see what they find.
They are using cold laser treatment on her to strengthen the neurons, and she is responding very well. I watched it happen. The doctor put the laser on her abdomen and head, and she was able to resist his push/pull on her legs. She could feel her strength improve, too. He is confident we can retrain her neurons to reconnect.
Lest anyone think they are taking me for a ride to make money off of us--because insurance will only pay for her adjustments and nothing else--the wife part of the team (Dr. Amber) is picking up the cost of her husband's treatments. She knows we aren't in a position to pay them right now, and she doesn't care. She just wants to help Sophie get better. (This makes me tear up everytime I think of it. While it might be surprising, when I put it in context for what WE do for our clients--which is put them first, regardless of whether or how much money we make--it isn't surprising at all. There are still decent, generous people in this world.)
Amber is also discounting Sophie's orthopedic inserts from $500 to $200. They scanned her feet at Friday's appointment, and her arches are collapsed. She has no arch in her right foot, and only a little arch in her left. Amber also put a lift in Sophie's left shoe to get her body weight to shift to the right, because the scoliosis is throwing her hips off balance. Amber weighed her on two scales, and Sophie is carrying 8-10 pounds more on her left side.
They are not telling me to cancel our surgeon appointment. They think (hope) it's possible to reverse her scoliosis enough that we can avoid surgery, but they are not arrogant enough to know they can. We are moving forward with everything surgery wise, simply hoping that even if she has to have surgery, her spine will be in as good as shape as we can possibly make it. Best case scenario is the xrays the surgeon and chiropractors will take will show improvement. Worst case, she doesn't improve by the time of the surgery, or it gets worse, and we still have surgery. Either way, she's going to be okay.
Wednesday, September 11, 2013
We see the surgeon in St Louis on 9/30. His name is Keith Bridwell. Based on his website and case studies, I feel really good about his abilities.
This case study looks simliar to Sophie's spine. Case Study
We saw a chiropractor Monday. She was referred to me by a guy in our office who had mild scoliosis as a child, which didn't require surgery. He's been seeing her for almost 20 years. She helps keep his body in line, because he has pain when he gets out of whack.
I called her last week to make an appointment, mostly because I can't stand to do nothing while we wait for the surgery. And also because I believe Sophie needs more than just surgery. She needs comprehensive care for her whole body. She's been out of whack for at least a year. And the time to get her straightened out is while she's young and healthy.
I asked to talk to the doctor to explain Sophie's condition and see if it was worth the time to see her. She talked to me for 20 minutes. I emailed her a pic of Sophie's xray. She talked with her husband (who is also a chiropractor) about Sophie over the weekend. They formulated a plan of care before we had our first appointment. (Cynical part of me realizes they will make a lot of money off of her so of course they formulated a plan, but the mom in me is just thankful these doctors spent time figuring out how they could help her.)
The chiropractor isn't meant to keep her from having surgery. The treatments will help her spine and muscles around her spine become more flexible and pliable. She worked on a young girl recently who had to have surgery. They were able to make some improvements, but not enough to avoid surgery. I expect we'll see the same with Sophie. At the very least, hopefully we can keep it from getting worse.
The doc has no idea if we can reverse anything. Her lumbar curve (lower back) isn't as nasty as the thorasic curve (upper back). If we can make her lumbar spine supple and make any possible correction, then possibly the doctor can fuse her lumbar spine at a higher point, which will allow her more movement. His website specifically addresses his approach to staying as high as possible on the lumbar spine.
We are seeing her for adjustments (and xrays and possible laser treatment--I have no idea yet what that involves) and her husband for neurological treatment (again, still don't fully understand what that involves; we meet with him Thursday) and for shoe inserts. He has a scanner & can do custom (thin) inserts.
Vickie, you'll be happy about the shoe inserts! Sophie's arches and ankles fall in pretty significantly. I have known for a while she needs something done for her feet. Even after the surgery is done, we will need to make sure her feet/knees/hips stay in alignment. I'm thankful the doctors are providing a comprehensive approach.
It's going to be intensive treatment. Three appointments this week--2 adjustments & 1 visit with neuro/foot doc. I'm sure we'll be doing 2-3 appts a week for a while. I checked our insurance benefits yesterday and I'm pretty sure I figured out it covers shoe inserts and there was nothing excluding chiropractors, although there might be a limit on number of visits (like there is for PT, which I know from Mark's treatments) but I didn't find anything.
I'm not freaking out as badly as I was, since we have an appointment with the surgeon and we are seeing the chiropractors. I don't feel quite so helpless now.
But my emotions are raw, raw, raw. When it rains, it pours. We continue to have financial concerns, Mark has a new physical issue that he needs to go see a doctor for (and could be significant but we won't know till he gets checked out), and my mom, bless her heart, feels about as helpless as I do and she's not handling things well, and when I talk to her it makes me a little crazy. I feel like if one more thing goes wrong, I'll lose it.
But I know I can't. I don't have the option to lose it.
I continue to be abstinent and avoid my poison foods. I am going to meetings, talking to my sponsor, praying and reading. At least I'm not going through all this being 50 pounds overweight and disgusted with myself every time I put food in my mouth.
I'm very thankful I found OA last year (11 months of abstinence as of last week). I finally finished my 30 questions (steps 1 - 3) and will be working on step 4 soon.
Friday, August 30, 2013
I knew it was going to be bad news when the doctor spoke in soft, slow tones. He spoke directly to Sophie most of the appointment, which I appreciated since it's her body. I think it showed a lot of respect for her. When he finally said "surgery," I gave out a little gasp, said "surgery?" and started to tear up. Sophie sat stoically the entire time, nodding her head and speaking affirmations that she understood. I took my cue from her, and held it together instead of collapsing into sobbing.
Doctor's summary was this: she has a 50% curve in her upper spine and lower spine, so it's an S curve, which I already knew from seeing the xray at her pediatrician's office. They took new xrays at the Ortho appt, so he could more accurately measure. He explained that at 10%, they monitor. At 20-30%, they usually brace. 40% always goes to 50%. 50% always goes to 70%. He refers maybe one patient a year for surgery; so some years, he refers no one. The more severe it gets, it can interfere with her heart and lungs.
The ortho doc said there was nothing we could have done to prevent this. It was going to happen, regardless of whether we'd caught it earlier and braced her. Whether that's true or not or if he said it just to comfort me, who knows. Either way, this is where we are.
Her biggest concern is getting behind in school. She finally feels like she got caught up in 4th & 5th grade. She was in honors classes last year and is again this year in 6th grade. I told her we and the school would do everything to make sure she doesn't get behind.
She doesn't want to be left in the dark; doesn't want to be treated like a child. She wants all the information we have, and wants nothing hid from her. She asked if she'd be in pain. She asked how soon she'd be able to walk after surgery. I told her she'd have pain but the hospital will treat it with medicine. I don't know how long she'll be in bed afterward, but we'll find out from the surgeon, who we will be making an appointment with next week. Hopefully we will see him soon so we can get questions answered. She'll be seeing a surgeon in St Louis at Barnes Jewish Hospital, which is where her neurologist was so we are somewhat familiar with the campus. The surgeon is one of the top in his field.
I called my mom & sister and told them. Sophie and I called my mom together. Mom & step dad are praying for her.
I know that God has something special planned for Sophie. He doesn't let hardships like this go to waste. She is a remarkable person already, at age 12.
We will all be on national healthcare in January. Healthcare reform has a maximum out of pocket of $12,700. If we can wait until January, then our deductible will be met right away, which I think means we will have zero out of pocket expenses--including prescriptions--for the rest of 2014. There are tons of questions around that, though, because the details of plans aren't out yet. They will be on October 1.
I was not expecting surgery. I knew it was severe, as I can see it in her back and shoulders, and I saw the xray at the ped's office. But I never imagined we'd go straight to surgery in a short amount of time. It still feels unreal.
We took the films home so we can take them to St Louis. Here's her xray:
Wednesday, August 21, 2013
I have been feeling overwhelmed by all the things I need to do and all the places I need to go, and it makes me off balance to feel so buried. I have also been hormonal (and there's a full moon, which I swear affects my moods) the past three days. So in order to avoid my killing someone, I came into work today at noon.
What I did:
Luke got on the bus at 7:20 (Sophie's is at 7:00), and at 7:30 I was mowing the yard. I didn't have time to get to it this weekend, and it had been 2 weeks since it had been cut. It was a "pile" that was under my skin every time I left the house or came home or looked out a window.
I don't mind mowing. I like the feeling of accomplishment and seeing results of my labor right away. It takes 45-60 minutes with a push mower, depending on whether I mow vertically or horizontally. Today was a 60 minute day. I saw two cicada's molting, and let me tell you, that was disgusting. There are dozens of shells all over our trees. Totally grosses me out. I hate those things--hate the way their garish sounds drown out everything else outside, and I obviously hate the way they look. Blech. Other than those monsters and the spider webs I walked through multiple times, it felt good to get it done.
Then I stripped the sheets and duvet off of our bed & set them to washing.
Then I put on my running clothes and went for a run/walk. YAY! It felt soooo good. I left at 9:15, listening to Mumford & Sons and thinking it's going to be a hot one. I started runnning right away because I've missed it so much. I ended up doing intervals and walking more than running. My running pace was often in the 10:30-11:00s and my walking pace was in 14:30-15:00, so my speed wasn't horrible. It was hot and humid, and the sun was strong, and my lungs weren't real happy with the thick air, and my heart is out of condition--despite all that, it was a great run. A reminder of WHY I love running in the first place. I hope I can build on it to keep moving forward.
I got home a little before 10, and I did more laundry and vacuumed and dusted. Then I got ready for work at 11:15, at work by noon.
It wasn't a lot of time off, less than 4 hours, and I didn't get everything done I'd like to, but it was enough for me to feel like I have a jump on things now.
I still need to finish my laundry and finish making the bed, and grill 3 pounds of chicken & beef tonight, and give Luke a bath (and check his hair for lice--2nd treatment was Sunday and he still had those damn things in his hair), and get the kids and myself fed, help the kids with homework if they need it, and be at church choir by 7.
I look at that list and think, is it any wonder I feel overwhelmed? Which is justification to start taking better care of myself, mentally & physically.