Backs and Braces. Fractures and Casts

First Back X-ray

Lots to catch up on, first of all we had the 3 week x-ray of Kate's back to see if the brace is helping at all. This is with her wearing the brace. That is in this first picture. We were told that the brace was doing the job we wanted it to and to return again in 6 weeks or so and take an x-ray without the brace on and see how things look.

In the meantime, we have been getting used to wearing this brace. The bottom of it pokes out of her shirt, although luckily at this age, her friends are all really cool about it. Kate is a pretty remarkable girl, hopefully her contagious good spirits will carry through times when kids turn into dirt bags you want to add kids names to a hit list. Yup, that's a warning. I'll take you out, or some other nonsense, if you hurt my baby girl.

Just to make life a little more exciting, I got a call on my way into work that Kate had fallen at school and her wrist hurt, but she didn't think it was serious. Kate never cried or anything. I had Kate's dad look at it and he didn't think it looked swollen so he sent her off to a play date. I got home from work about 7 pm and looked at her wrist and instantly knew something was wrong. So, urgent care closed at 8 so we jumped in the car and made a mad dash. Sure enough, Kate had a fracture all the way through her radius right below her growth plate. They gave her a splint and orders to be seen at Rady Children's at the beginning of the next week. They asked if we had ever been there or know anything about the orthopedics there and Kate looked at me and rolled her eyes. She laughed when the doctor stepped out and said 'hello, like I live at Rady Children's'. This was Thursday night, October 30th. I took her trick or treating with her friends on Friday night.

Urgent Care

Kate already had an appointment on Tuesday the 4th for her back check up to do x-rays without her brace, so they just added the wrist for good measure. We took the x-ray we had taken at urgent care so she only had her spine x-rays done. She really didn't want a cast, but of course, a cast we got. She has a great sense of humor about it though, she had already had  red, blue, and green casts and all that was left was purple, pink and black. I refused to let her have black, no reason in particular. And Kate refuses to wear pink, I may have screwed up my girls in this regard. So, purple it is, and we decided that IF there's a next cast, we will start over at red again.

Her back pictures looked good and we go back in 4 months to do another x-ray. Until then, she wears the brace 20 hours a day. Honestly, sometimes her back hurts now when she's not in the brace so she usually wears it most of the time.

Her cast on her wrist will stay on until December 1st. Which isn't horrible, except she was supposed to go swimming with the otters this weekend. Argh, postponing that was a drag. The facility was very sweet about it though. Probably going in January. We are back to washing hair in the sink, wrapping her wrist in plastic for a bath, just all of it.

You can see Kate getting her cast on and getting her back pictures taken in the two pictures. By the time we got back to the car Kate was kind of sad, who can blame her, right?  The smile came when I told her we would ditch school the rest of the day and go to eat at a vegetarian Chinese food place she's been wanting to try. It wasn't bad, actually. And Kate cleared her plate of orange 'chicken' so I'd say it was a success.

 I took Kate and Noah to the park today and watched her climb all over with her back brace hanging out and her wrist in a cast, and a smile on her face. Sometimes I find myself thinking about her health, about my health, about how much I miss Abby, who is doing fantastically in France, and I find myself getting tears in my eyes, lump in my throat. I can turn it off pretty fast, lots of practice. I turned it off again today. The kids and I got in the car to come home and proceeded to drive into the garage. Until I realized I wasn't moving very fast and it dawned on me that I had boxes of books that are going to be picked up tomorrow by UPS going to a client. Holy freak. I got out and saw that four boxes were squeezed, squished, and totally stuck under the front of my vehicle. It was a laugh or cry moment. Noah and Kate got out and saw the disaster and looked at me, waiting to see the reaction. I looked at them both and just said 'bummer'. We eventually got a knife out and literally cut the boxes open and took out each book. Not one book was damaged, which was crazy, because the boxes were in unbelievable shape. As Noah helped me get new boxes and weigh the books again, we were talking about life and things we deal with, and he said that if someone were to look at my life, they would think it was kind of bad, not very fun. But, day to day, he thought we were doing pretty good and I seemed happy. That was good to hear. And it's the truth, moment to moment, day to day, life is great. 

 ***Have to add what happened last night, part of why life is really OK even when it's not. So when we were cutting the boxes open, laying on the driveway, heads under my vehicle, Noah and Kate were discussing the imminent damage were were going to find in box number 2 because it just looked gnarly, no way the books will be alright. They sounded so concerned, I just thought it was cute. I looked at them and said 'this is hilarious'. They both looked at me like I had gone totally bonkers, Haha. So I said, 'well, not right this minute, but someday we are going to be sitting around and it will be totally funny when we start talking about that time Mom ran over her books'.  Late last night I was sitting on the couch repairing some antique books, these came to me damaged, I swear, I had no hand in it. Anyway, Noah came up to me and started talking to me about the Captain America that was on the TV and then turns to me and says, 'remember that time you ran over all your books? That was hilarious'. See what I mean! How can life not be great with kids like mine. :)

Brace Update

The short update is that Kate is (mostly) successfully wearing her brace.  The weather in lovely San Diego has been in the high 90's and I am hoping that is the cause of the brace shaped rash on Kate's body. We have been using Benadryl and anti-itch medicine last night and tonight. I am sincerely hoping that when the weather cools down the rash will disappear. Because of the heat, Disneyland has been postponed until it cools off a bit. Favorite time of the year there, Halloween!

Kate and a few friends got together today and when I picked Kate up, she had shed her outer shirt and just had on her t-shirt with the brace over it. The kids apparently didn't really say anything about it, although when I arrived they asked me how long she would have to wear it. I wish I knew. We will find out a little more when she has her next appointment. But, this is good, Kate might not feel self conscience about it now that she realized her friends didn't really care. I do worry kids in middle school won't be as kind, but that is a next year problem.

Generally, I am a little better than my last post. Although my body has forgotten how to sleep, over four nights now, and that is taking it's toll. I am sure it's stress or worry or too much on my mind, etc. I have tried melatonin, and even took to drinking NyQuil in the middle of the night. I generally get to sleep, but I don't stay there. Not that walking around in a fog isn't fun, but I get migraines when I don't get enough sleep. Luckily, I have only had one decent one. It struck around 1 am, took Vicodin at 2, asleep by 3:30, and up again by 6. See what I mean? If only my brain could focus during all that awake time, serious reading could be done! 

Angry

Today I wanted to go buy Kate some clothes for her birthday. This girl loves animals, she has even become a pesceterian, no meat, just fish, since last June. She wants to be a Zoologist. All I wanted was to find a shirt or two with animals on them, she loves them, and shirts with animals on them are EVERYWHERE. But, here's the issue. Miss Kate is turning 11 on October 6. She is currently wearing size 16 shirts, a 14 might fit if it's longer than your standard 14, but more often than not they are too short. I went to two stores today and all the animal shirts stop at size 14. I realize my reaction is because of me, how I am handling this. But, man I was mad. I haven't had this reaction very often, but it has happened before. It was one of those 'if I don't hit something, I am going to burst into tears' moments. Today my steering wheel took the brunt of it. I stormed out of the store and went right to my car. I didn't turn it on, I just balled my fists up and hit that stupid, and unbelievably hard, steering wheel. It actually felt good to hurt. I'll probably get a bruise. I may have also yelled a little as I was hitting the steering wheel. I know I did. It helps. Somehow, it helps.

The problem is, that I cannot solve the problem. It just keeps growing and changing and I can't keep up. As soon as we fix one issue, another crops up. The last couple months have been rough, won't lie. Between my Abby moving, my health issues, and Kate's, I am officially tired. I am only putting it here, in writing, so someday I can look back and read this and know that this time is over. It's a funny thing, I have pictures on my phone of Kate in her body cast, Kate in her wheelchair, Kate straight out of eye surgery, and when I see them, I don't feel like it's over. I feel sorry for the Kate in those pictures. I feel my chest hurt all over again. I cannot fathom how I made it through those times. And 'those times' are never going to end. Ever. That is my frustration. My pain. I would give up anything to take this from that sweet girl. I would gladly go totally deaf tomorrow, give up my last years of hearing, I would have given it at the beginning. Is it possible I am still in the bargaining stage years into this? Maybe the stages eventually just get put on repeat.

I am the master of having a plan, even if my plan doesn't fix the problem at hand. But, if I have a plan, then I can take some kind of action, I can move forward. I can start my car and move. And that is how I got out of that parking lot. My plan? I'm gonna go buy some sushi and go give my kids a hug. That's it. But it was enough. I had a place to go and I started on my way. I picked up my sushi, and some freshly shelled peas, and took off to give Kate a hug.

When I saw her, she had a huge smile on her face. And she was wearing her brace. She was so excited to show me how messy her room was, haha. Total wreck. She likes to see my reaction. I love her so much. It did make me feel better. It always does. It's supposed to be 99 degrees on Saturday and I asked if she would want to go to Disneyland in that heat wearing her brace and she said yes. That's my tentative plan, see a plan. They help.  Tonight she will spend her first night in the brace, tomorrow will tell how things are going. She claims she's getting used to it.

This blog, it's a good way to keep people informed, but posts like this, that I won't make a point in sharing, are for me. This is my therapy, even as I type this in tears. It will help tomorrow be a better day. At least that is the hope. I know Kate is loved, I am loved, our family is loved. I feel it, I know it, and I am eternally grateful. Tomorrow I will probably hate that I spill my guts on here, and believe it or not, I am holding back.  Mostly because I know this helplessness will pass. It has before, and I hold on to that truth. Forgive the complaining and whining and all of it, but it sure feels good to get out of my system.

Officially a "Curvy Girl"

 Today was brace day. First things first, we got the brace on and the therapist started marking Kate up to make changes in the cut of the brace. There is a huge part that comes right up into her armpit, you can see it in the picture. Kate hated that, and I could see her underarm getting red and scratched up, and I hated it also.


She did trim the armpit area and a couple of other places and we refit the brace. Kate has to lay down to put it on to get the right fit. She then has to roll onto her side to help herself sit up. I told her I had to do that same move when I was super pregnant with her and her brother and sister. I could help her figure that part out.

 All in all, Kate mostly just didn't like the armpit part of the brace, but we were assured that she would get used to it. You can see a hole in the left side of the brace, that is the 'release' part of the brace. Just opposite of that, but a little lower, is the part of the brace that is applying pressure to Kate's spine. So on the bottom right side it's pushing in to help correct a curve of the spine more towards the center, and on the ever loved armpit side, it's pushing the spine towards the center from the top. Her spine has two curves going in opposite directions. I hope that makes sense.

After we got Kate dressed, including hoping that her shorts would button up on the outside of the brace, she wanted to see what she looked like. I started to take pictures, but then we were shown to a mirror in another room. 



I told Kate I didn't really notice any difference, although her bottom/lower back do look a little square shaped if I try hard to see a change.

These pictures were funny so I had to include them. Kate sat down and her brace rubbed against the chair and sounded just like your thinking it did. I looked over at her and she was laughing and covering her face. Too cute.  It's nice to have a little funny when my throat feels tight and my chest hurts. She's a great kiddo.

Kate will slowly start wearing the brace, 1-2 hours today, 3-4 tomorrow, etc. until we hit 20 hours a day. We were told it will be similar to when she got her braces on her teeth. It will take time to get used to it, it will hurt, but eventually be alright. We were also told that her body would get used to the heat of wearing a tank top, a brace, and a shirt. Kate is highly doubtful. 

  By the time we left, I needed a serious pick me up. We decided to stop at Trader Joe's and get some chocolate and peas. It was about a 15 minute ride from the appointment to the store. We had the A/C cranked. Kate was still too hot, and I ended up putting my jacket on. I foresee cold times in my future.

By the time we started walking into the store Kate was asking to remove it. I told her we had to go at least an hour, I was hoping two. I looked at my phone and it had only been 45 minutes. This is when she told me she thinks she can get used to the armpit issue, but on the right side where the brace places pressure to straighten her spine, really hurt. She looked like she was in pain, wincing. Even typing that makes me kind of growl and shake my head. Frustrating to know you can't change it.

Kate wiggled and bent, as much as she could, the whole time in the store. I told her we could take it off once we got home. The second we pulled into the driveway she started ripping it off. Sweating to death, hurting, this is going to be a rough one. When we go back in two weeks, they may add another pad to the right side to push it even further. So she might get used to it, but then it will start all over again. At that appointment in two weeks, we set up an appointment for x-rays. This is where we hope to see some change, that the brace is doing it's job, and we also have a follow up appointment with her doctor. If it is working, we go back every 4-6 months to make sure it is still fitting properly. If it's not, back to the doctor. Not going to think about the rest yet.

These days seem to be getting harder on me. I've decided to allow myself one complain and feel sad and angry day. This is that day, so stay clear, you are warned. Tomorrow I will start repeating the list in my mind of places, people, and things that make life great.

Measuring for Back Brace

We went in to get Kate measured for her back brace today. It was quite the production. First Kate had to be wrapped up in a cotton dress, doubled up. I love this first picture, I know it's blurry, but Kate's smile is priceless.


Then we had to put up Kate's hair so she didn't get any in the casting material, also put Vaseline on her armpits, Kate thought that was pretty weird. She actually laughed through most of the process. Had to remind her to think very unfunny thoughts. Having her hair up makes her look so old! It's really cute, though. I hope she will wear it that way when she's older.

 After having a few measurements taken, the casting material was applied. It got warm and cooled as Kate gave us the play by play. She did say it was kind of hard to breathe in, but her real brace will have a "release" or an open spot that is opposite of where the pressure will be applied on her spine.

You can see in the photo's all of this taking place. Then the cast was cut off. Of course Kate asked her how many people she had cut in the past, she is so snarky, ha ha. She picked out a brace called tattoo, it's white with some swirls on it. Kate thought that was pretty fitting given my RN job of removing tattoos.

While I am holding back tears and sending texts to my sisters using code for swear words, Kate is happily talking about the color of brace she wants to get. This amazing kid, her smile and roll with the punches attitude is literally the ONLY thing that keeps me not falling totally apart. Any mom of a child with health issues can probably relate, but I seriously feel guilty about all the things Kate goes through. What had I done in this pregnancy to mess things up when she was forming? How many times have I wished to go back in time and redo the pregnancy. 

So here's the deal. We come back on Wednesday the 24th for an hour long appointment that will take us through trying the brace on and making adjustments, how to slowly start wearing the brace, things to watch for, etc. After she wears the brace for two weeks, we come back and get rechecked. We will also go in and have another X-Ray of her spine done. Assuming the brace is helping, we continue to have regular check ups and change brace as she grows. If it's not helping, well, we will cross that bridge when we get there. Another surgery.

 We got some information on websites that other scoliosis kids go to to meet each other and talk about clothes and life in a brace, etc.  I will definitely be getting Kate talking to some other kids. She can wear the brace underneath her clothes as long as she wears a seamless cotton t-shirt underneath it.

Since Abby is now living in France, Kate has been sleeping on Abby's bed at night. Abby's mattress is incredibly uncomfortable and hard, but Abby likes it, and Kate has not ended up on the floor since she has taken the bed over. Small victory? I'm counting it. 

The other victory, her cardiac echo shows that while her body continued to grow, her aorta and other vessels have remained stable, and even slightly smaller than last year based on her body to aorta/vessel ratio comparison. EKG also normal. It is good news, and I am incredibly grateful.

Thank you to everyone for your continued support through this journey. Kate and I joke around how our bodies love us so much. I sometimes think I got Meniere's Disease, deafness, tinnitus, etc. just so Kate will have a partner in crime in having our bodies really kind of fail us.

Middle of the Night

I woke up last night around 2 am with a bad dream. Typical bad guy with guns, there were elevators involved, you get the idea. Anyway, I couldn't get back to sleep so I did a tour of the home and checked on kids and cats and doors and windows. This is what I found in Kate's room. Asleep on the hard wood floor.

Kate is such a brave girl, but it drives me crazy that she doesn't come and get me, tell me she hurts. Anything. Yes, I know that having kids let go of mom is an eventual good thing, but pull on my apron strings! Come on! This is what I can do, make you feel better.

This little stinker, she says things just to drive me nuts. She tells me that she runs super fast or did some heavy lifting or something at school today. And then she will laugh and laugh. She knows she isn't supposed to, and she doesn't, but she likes to get me going. And I do! I play into it every time. 

Wednesday we go get Kate measured for her back brace.

The Back

April 2014

 Kate has been complaining off and on about her back hurting since last spring. We took her to see her spine doc, Dr. Newton, last April. He confirmed that her scoliosis had gotten worse, but not quite bad enough to put her in a brace. He didn't see anything obvious that might be causing Kate to have pain, and dismissed it as a possible strain on her back.

In the time since last April, Kate has still off and on complained of pain, but never so bad that a little Tylenol hasn't helped. There have been a few times I would find her asleep on her floor in the morning, stuffed animals all around her. I had assumed it was just a kid thing, how fun to sleep on your rug with your animals. After it happened a few times I asked her about it. She said that her back hurts in the night so she gets on the floor because it feels better.

Geez, all the little ways your heart breaks. I felt terrible. I had a talk with her and let her know this is exactly what mom's are for, come and get me, tell me you hurt, let me do what I can to make it better. This is my job. Of course she said I had other jobs also, like cooking, and then we laughed and laughed. I give out square, healthy meals, but to say I cook is a bit of a stretch.

August 2014

So today we had another x-ray and meeting with Dr. Newton. You can see from the two pictures that from April 2014 to August 2014, four months, the curvature of her spine increased significantly. When she bends over and touches her toes, I didn't used to be able to see it, not really. Today, I saw it. It was rather shocking. I didn't really know that it could look the way it did. If you look down the center of her back, along the spine, you can see that the right side and left side are not even, like not even close to even. One side is higher than the other.

On the way to the appointment today, out of the blue Kate says, "well, if I end up with a brace, at least my posture will be really good". Foreshadowing right there. Here's the deal. The Dr. will send over a request to a place that makes back braces and get the insurance approval. Then the brace place will call us and we will go in and get Kate measured for a brace. This should all happen within 2 weeks or so. Then the brace needs to be made. They will have us back to try it on and make adjustments. Then Kate gets to wear the brace for a few weeks and then go back to see Dr. Newton and they take another x-ray and see if it's properly working. She will need to wear the brace around 20 hours a day. The other alternative is surgery.

This is a post it note that the nurse handed me as we left. The measurements at the bottom, 5 foot 1 inch plus, this is how tall Kate was in April.
Now she is 5'2" plus. Four months. Just four months.

This is the issue. Kate is still growing and will continue to do so for several years. I don't want more surgery, I don't. Why does it feel inevitable? The nurse offered to connect us to other parents and kids who are in the same boat. Maybe I will do that.

First things first. Abby is leaving on the 4th to move to France for her junior year of high school. Nothing stressful about having your 16 year old move to another country for 9 months. That's sarcasm, Sheldon, as Kate would say. Between all of this, I am a living headache, horrible nights sleep, semi-zombie. Work, kids, health, pets, house.....sign me up for the padded room. It's starting to sound like club med.

I'll update when we know about the Echo and EKG results. On the bright side, because we always have one, we went to Disneyland this last weekend, having endless chips, salsa, and guacamole nearly every night, and basically throwing rules to the wind for the next week or two. Serious rebel here :)

Full back x-ray

Yearly Echo and EKG

Echo

 Yesterday we had our yearly visit to the cardiology department at Rady Children's Hospital. Kate commented on the way in how somethings have changed at the hospital, how this isn't our usual parking spot, etc., this is how you know you hang out at hospitals too often.

I received a call from Kate's cardiologists office a few days before letting us know that we could have the tests done, but that the doctor was in the hospital himself, infected foot from a previous surgery, and wouldn't be able to have an office visit after the tests. So, he will look at the results and give us a call in a few days. We will then reschedule an office visit for a full, in person, check up.

EKG's are super fast, easy, minus the stickiness of the little tabs. The Echo, however, took us almost all the way through the movie Tangled. 

I'm always a little covert when I snap pictures, who knows if they care, but I do it covert just in case. My daughter, I can do what I want. Basically my attitude lately. Pretty much hating rules and anything that has to do with social conformity. Life is too short, too hard, to have to deal with other people's version of how life should work. Rant over.

Getting ready for Echo

EKG

Surgery, April 15th

My favorite picture, this is post surgery and Ethan just asked her where it hurt and she replied, "where do you think?" and gave us this look. Spunky little stinker. 

 

 

When Kate had bilateral hip surgery a couple of years ago, we knew this day would come. Kate had long plates with screws on the outside of each femur and they needed to come out. And the main reason being that at some point in the future she will likely need hip replacements. Great, right? I'm hoping for when she is 50, or 60, or never.

Waiting to go in

Here is a girl who is far too happy to be having surgery. She knows the routine so well, she can tell the staff members what is coming next.

Kate was supposed to use crutches for three weeks post surgery and no sports for six weeks. She can't do sports anyway due to her heart, but no rough housing around for six weeks. The bones were very weak and needed time to fill in the area where the plates and screws had been.

 The surgery went well and Kate was a trooper. One night in the hospital, yay! She did struggle a little bit to put pressure on her legs and so for the first 2 days she used a wheelchair at home. By day three she was sneaking about without her crutches.

At our one week post op visit, Kate pretty much carried her crutches into the hospital. I had to keep reminding her to use them, if for no other reason than the doc won't yell at mom. Everything looked great, but we were told two more weeks on the crutches just to "slow her down". She took them to school for one more week, only used them at recess and to walk out to the car. She has done so well with this surgery, by day three she was just taking Tylenol and was lamenting to go swimming. That had to wait.

Kate is doing great. One little glitch...a few days before surgery, Kate complained that her back hurt. This happened about three times. Finally had to take her in. The doctor thought it was just a pulled muscle and she hasn't complained since. But, since she was there, they did a back x-ray and found that her scoliosis has gotten more severe. We are officially on a 6 month monitoring schedule for that instead of the yearly. Sigh... and the band played on.

Practicing with crutches before surgery

Literally feeding her ANYTHING she wants just to get food in that belly. Almost ready to go home.

One week post surgery visit. Kate LOVES those paper shorts. (Sarcasm, Sheldon, as Kate would say)

Such a happy girl, pre surgery.

 

 

 

 

Braces!

First of all, ignore the water, she had just had a drink from the fountain :)  Another beauty of Marfans is the palate issues and the bite issues. She got her expander out and braces on the top teeth probably about 2 months ago. Yes, I know. I am just rocking it at keeping things updated. As you can see from this picture, her top teeth are going up and down, and up and down, all over the place.  She was a little sore the first two days, and then nothing.


We went back 6 weeks later and the results are amazing! Check out this after picture!  She is getting braces on the bottom in a few weeks. The teeth are looking straighter, but the bite is still way off.

Long Overdue Update

Ethan had surgery a few weeks ago and had his hardware removed from his foot. He was home the same day and had a few days of pain, still limping pretty decently, but doing alright.

When you have Marfans you can have a high palate, that is also too narrow. Of course, Kate has this. She seems to get it all.  She had a spacer put in a few months ago to help correct this. On Monday she had the spacer removed and braces put on her top teeth to help correct her bite and straighten her top teeth. Lower braces will be in her future as well.

Her last appointment with her cardiologist went well, it was months ago. So far her aorta is stable. Her eyes are doing well. Her back, sometimes she complains about it hurting, but it has been a while since she has complained about it. We are in keeping stable mode. Fingers crossed we stay here.

On April 15th Kate will have her hardware removed from her legs from her hip surgery she had two years ago. It will require an overnight stay at Rady Children's, and then a few weeks on crutches, which she has never used so this could be interesting.

Kate is an amazing kiddo. Her spirits are as bright as ever, she seems to take everything in stride. I, on the other hand, am sick to think about staying overnight at Radys. Great place, nice staff, but I need a few more years to be OK going back there. I am becoming a wimp. Or I am tired. Feels like swimming against the current for so long that if one more wave comes I'll end up floating away. That won't happen of course, I'm the mom. Mom is tough and strong and can deal with anything for her kids. But man, the fight feels harder lately. My own issues I think are playing a role in that for sure. My hearing is quasi stable, buying me more time before I go deaf, yay. The tinnitus is loud and annoying, sensitivity to sound, blah. Let me complain a little more, haha.

In other news, I started working as an RN again doing laser tattoo removal, which I love doing. I have told my patients if they need a break, they need to yell loudly. The laser is loud and extremely painful. And yet everyone thanks me afterwards and I even get tips! I am taking to kids to see their cousins in  St. George next weekend. Can't wait. This is what matters.