Back Update

Getting measured

 For the last couple of months Kate has been all too happy to take her back brace off any chance she could. It is supposed to be worn 20 hours a day. There's always an excuse, it's too hot being the most popular. I noticed that it isn't fitting like it used to and took her into to checked. Sure enough she has grown almost 6 inches and her back brace isn't sitting on her hips like it should be.

On the bright side, because that's what we look for, the technician who measured her back thinks that the curvature of her spine hasn't changed for the worse and possibly is even improved. Only x-rays will be able to determine if he is correct.

The plan is to get a new brace, which takes about three weeks to make, then wear it for a few weeks. After that we go back into see her doctor at Rady Children's and get more x-rays. End of plan there. Everything hinges on that.

Getting fitted for a new brace is quite the party. First she gets two "dresses" made from stretchy material. They then stick a long rubber looking ruler between the two "dresses" so after the cast is made it can be cut off and leave a dress on Kate afterwards. Then he measured and drew lines all over Kate's outer dress and proceeded to apply casting material, the same used when you break a bone. Lots of experience with this stuff. Kate is a giggly girl and had a hard time holding still during the casting process. This girl makes me laugh. When he was cutting off the cast, the sound off the cast getting cut off sobered her up pretty quickly. She looked at me and declared that we are stopping and getting a treat on the way home. Something tangy, which we did. Now we wait.

One other thing, Kate just started middle school and we are all in a mess trying to get her out of going to PE. She can do a few things, but so very few it is not worth her dressing. Personal opinion. Also, she is a stubborn thing. She knows she shouldn't do certain activities, but she's still a kid and likes to prove that she can still do things even if she shouldn't. I cannot imagine the peer pressure in middle school to fit in, and how is she to do that in a PE class where she will be automatically singled out? Several emails and phone calls between the school and a district representative and we are still waiting.

Knowing that Kate cannot do some of the activities that other kids participate in, we gave her a week of golf lessons that she quite enjoyed. She is also taking regular archery classes. Of course the classes are sometimes held in a shop that is plastered with pictures of all the dead animals the people there have shot with arrows. Kate is very much not a fan. The first time we went, she gestured with her head to a wall of photo's and rolled her eyes. Man I love that kid.  

On goes the casting material

Casting

Life Update

 A few weeks ago I took the kids to Utah for South Weber Days, it's a family tradition. On the plane Kate was sitting next to me, she was tired and had her head on my shoulder and her arm draped over my lap. It was chilly, it always is on airplanes, and Kate was sharing my jacket as a blanket. I looked down at her long, graceful arm, letting my eyes follow to her hand. Longest fingers ever. Her wrists are even long. I don't know if others see it, if they notice her long limbs. I know they notice her height, people comment on it all of the time. Especially when they find out she is only 11. She will be 12 in October. But still. It used to break my heart a little when someone commented on how tall she is, but she is so happy to be tall at the moment, I try to take it in stride. I pray her growing with slow down, even stop. I don't tell her that I pray for this, but I do. Constantly. Not only so she doesn't have these things that might set her apart from others, but so her heart and back can remain steady, no more enlarging, no more scoliosis questions. 

I have this little thing for books, some people might know this about me. One thing I like to do in Utah is take my kids to a bunch of second hand book stores and see what treasures we will find. This trip I took my two nieces with me. The blond is the same grade in school as Kate. The brunette is a couple years younger. But the difference in height is staggering. Granted, my side of the family was not gifted with height in any way, shape, or form. I try to convince myself that the difference is really because I come from a family who is vertically challenged.

Kate is as enthusiastic as ever with life. She has been over a year not eating any meat other than fish. She did go full vegetarian for about 6 months, but the call of fish was too strong and she went back to being a fish girl.  She and Noah have had some animated conversations about animal cruelty and the health benefits of not eating meat. She darn near went total vegan, but I told her if she wanted to do that I would take her shopping, but she would be in charge of all of her meals and would have to chart how she was meeting her nutritional standards. Not sure if that felt like too much work, but she decided against it. I have to give her props, she makes up her mind about something and sticks to it. Amazing little kiddo.

Beautiful Teeth, Tall Girl

I am completely and totally biased when I ask this, but have you ever seen such a beautiful smile?  This is actually from December of last year, 2014.  On the bright side, I haven't had a lot to post the last six or so months. That is usually a good sign. For the most part things have been remaining steady. But, it's now entering the fall and that is the time of year we go back to all of her doctors to make sure we are doing well.

Along with braces coming off, Kate has also surpassed both Abby and I and height. She is absolutely thrilled about this, and Abby cannot stand it. Haha. So, currently in order of height we are Noah, Kate, Marci, and then Abby. I guess you can see why she hates it.

Spring Break at Universal Studios CA

Passing Up Mom

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.