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.