Braces and the Case of the Little Body

The people closest to Kate knows that she doesn't eat much meat, only fish. She is a Pescetarian. Just today, Saturday 3/17/18 St Patrick's Day, I took Kate and Noah to pick up some lunch and Noah had In N Out and Kate just grabbed some fries. Once we got home we started talking about how long Kate has gone since she stopped eating most meats and we came up with 2013, so it has been 5 years! She did go through a 6 month phase of being totally vegetarian, but decided she had a hard time finding food to eat at restaurants and frankly missed fish.

 I also told the story of the first time Kate told me she was done eating meat and Kate hadn't remembered. I had cooked barbecue chicken for the kids for dinner and we were at the table and all of a sudden Kate jumped up and ran, not walked, ran to her room. I followed her and she was visibly upset sitting on her bed. I asked her what was wrong and she told me that the chicken looked like a little body and it was making her feel sick. This was more than a child's fickleness, she was really shaken up. I told her she didn't need to eat the chicken but she needed to eat something so went to the kitchen to fix her a plate of everything else. I looked at the chicken on her plate, weirdly can still picture it clearly, and it did look like a little body.

So in a sense, it was my cooking that put her off meat, ha ha. Although I haven't cooked red meat in over 20 years, I switched to ground turkey and never looked back, I haven't even had that in years. We now do veggie tacos, meatballs, Chinese food, Tofurkey, and the like. Better for our health and for the environment. Kate still tries to convert everyone to cut out meat completely, Noah has switched to cheese pizza and adds his own meatless pepperoni, we haven't all switched 100% but we are constantly getting closer.

 

This story does have a point, ha ha. In this picture you can see Kate eating at her favorite restaurant, Sipz Fusion Cafe, orange chicken, vegan style. This was her pre-braces last hurrah. It's actually really good, but too high in sodium for this mom. A couple bites and my head is buzzing horribly. 

A before and after braces picture. She is adorable with her braces. This was actually a hard day. Throughout all of Kate's many surgeries and Dr appointments she has had an amazingly positive attitude. She has not had one day of feeling sorry for herself.  She's a freaking saint. Honestly.  While she was getting the braces on, the assistant was saying Kate will need to eat soft foods for a few days because her teeth will be sore. I could see in Kate's eyes that she was feeling a little unhappy so I signed a little with her, as she was unable to speak, and told her donuts were soft. She gave a half enthusiastic thumbs up. We are not anywhere near fluent in ASL, but we know enough for a very simple exchange. 

When she was all done and we were walking to the car I brought up a donut again and she said no, she just wanted to go home and relax. This girl never says no to a donut so I knew she wasn't feeling like herself.  I made sure she had some Advil and took her home. About an hour later she text me, I'm sad. Ugh, broke my heart. She is never sad. Not about this stuff. Then she sent a picture of a donut. I was never happier providing absolute garbage for my daughter to eat. Two donuts, extra soft. She never said another word about being sad. But this will stick with me forever. I don't think it was the braces as much as I think you go and go and be tough over and over again and sometimes you're just tired. Being strong all the time takes effort and will, it's a testament to her spirit that this is the first time she had a moment of being human like the rest of us. She is most definitely not your every day human being. She's extraordinary in every sense of the word. 

About a month ago I sent all my kids a text telling them how much I love them and admire the people they were becoming etc. In Kate's text I mentioned how much I admired her strength and attitude. Her response was classic, ha ha. 

....Love ya too and all but are you on drugs or something? .....That was so cheesy....

In her defense, sometimes I am on drugs. Hello migraines. But I was not on drugs at this moment. We do say medicine instead of drugs in public and around other people lest they think we mean "drugs" instead of drugs. Our own inside joke which is a little irreverent, possibly a little screwed up, but serves its purpose bringing us laughter in what would otherwise be a sad situation. And it's something we have in common, we both need our pharmacutical friends to get through this life. She is, in some ways, a classic teenager. Loves her sleep, listens to music far too cool for her mother, and thinks that loving texts are utterly cheesy. 

Kate is kicking booty in school as well. All the kids are doing well academically. It seems no matter how obscure of a topic or interesting fact I bring up with them, they already not only know it but can teach me more about it than I ever had the capacity to teach them. The education table has not only been reversed from parent to child, but has been flipped upside down and thrown into the stratosphere. 

***Marci health note. Sleep in elusive. Daily headaches, dizzy, tired, and fibromyalgia pain is flaring up. So, basically a party over here. :)  And I mean that in a non sarcastic way. It's true what they say, though definitely not easy, attitude is everything. We make our own party. Life IS pain princess (because we are all about the movie quotes in this house). But WE can choose to laugh or cry. And we always choose laughter. And drugs. (Thank you modern medicine) And donuts, can't forget those. 

Braces....again. February 2018

So to begin with, over Christmas Kate decided it was time to chop off the hair.  This was a momentous occasion so I took a before and after photo. We were in the salon in the middle of her hair being cut away and I said "huh" out loud and Kate asked me what I was thinking. I said I believe this haircut makes you look older. She started laughing and said "Mom, that's kind of the point." What?!?   With her being 5 8'' I am seriously considering stickers to put on her shirt that says I'm only 14, back away.

The kids and I went to San Francisco for a week and spent New Years there. Museums, food, the works. Had a wonderful trip. And yes, she looks far too old. And adorable too. I am one blessed mom, all loving and wonderful children.

 Braces, seriously, again.  Kate doesn't have room on the top for her canines to come down and all of her top teeth need to rotate to the right. I guess the one bright side is that her spacer has worked and her palate is still wide enough to work with.  So, here we go again. She will also be using rubber bands this go around.

The braces will be put on March 12th and she's soooo looking forward to it. Her orthodontist thinks they will be on about 20 months. Which in teenager time is approximately 5 to 10 years or so. She is such a good sport about it, as she is with all things. She takes in the new information and a few minutes later seems to be at peace with whatever she now has to deal with.

The nice thing is no more mouthful of putty to get ready for the braces. It's all done with computers now and takes just a couple of minutes. Grateful for the little things.

Her back is healing well, she had X-rays before the holidays and things are going well. Her back pain is almost nil, almost. Her feet still hurt whenever she isn't wearing shoes, which she does the moment she wakes until the moment she falls into bed. Other than that she is holding steady.

Side note on her X-rays (and my life): We walk into the room and they start going through the usual questions and the tech turns around and asks me if there's a possibility I might be pregnant. Without missing a beat, my lovely, precious, daughter starts laughing and says "there's no way my mom is pregnant. Like no way."  While the tech is trying very hard not to laugh, I turned to Kate and said "Thank you, sweetie. Thanks" and that pretty much sums up my life.  Still single, happy, employed, and barring a few horrid days in November, I am upright every day.

Update on Miss Kate September 2017

 I can't believe it has been so long since I have updated Kate's blog. So here's the quick stuff. Kate's back has taken some time to heal, as you might imagine. Even now, almost 10 months later, she doesn't like full on hugs and says she is still numb down the full length of her scar.

Dealing with life unable to bend has it's challenges. Her neck gets quite sore at school looking down at books all day. Picking things up from the ground or from low shelves also requires a lot of knee bending. She can still swim but it's a whole different ballgame.

Over the last few months I have noticed that Kate keeps her shoes on right up until she goes to bed and they are the first thing to happen when she gets up in the morning. Of course when I ask if her feet are hurting she has a sarcastic response that I must be imagining things. She has also been expressing, non verbally naturally, that her hands hurt as well. I figured there was nothing to be done, but took her to the doctor anyway. It's all a lack of fat padding on both her feet and hands that causes pain. Mostly in her feet. While seeing that doctor it was determined that her legs and hips are very tight and he recommended physical therapy.

You can see her doing some exercises here. We are also working on regaining her arm muscle strength for archery. Her therapist mentioned that some kids who grow very quickly and who are tall often have some lack of flexibility in the legs and hips. She definitely grew quickly last fall. Overnight even.

Kate also had another set of x-rays on her back and everything looks good. She had her heart echo and it has remained mostly stable. She did have another breathing test and it was determined she isn't breathing much better than before her spinal fusion. She needs more exercise. It's a fine line, get exercise, but don't stress the heart and good luck finding something she can do that doesn't hurt her back or feet. So, there's that.

Kate has been asking to be home schooled for a couple of years now and she is finally getting her wish this year. She is doing an online school with live classes every day. So far, so good. They are really working with her for the PE portion of the credits. Physical therapy and archery count.

She's such a beautiful girl, inside and out. This picture is from the first day of school. She grew out of her chair just a little bit. Don't worry, I got her a new one. :)

Almost Two Weeks Out

Ice Cream and a Smile

We had our first outing! Went to the drive thru for an ice cream cone and then stopped at a gas station where Kate actually walked in, rocking her Pooh Bear comfy clothes, and picked out a piece of candy. No Halloween for this girl after all. Funny how you don't care about being in pajamas or how things look when your just living in the survival mode of life. I was just incredibly happy that she walked as well as she did. Pretty cute pajamas and beautiful girl anyway.

By time we got back in the car she was seriously tired. But we had some smiles, sang a few of Kate's favorite songs, and got to see something other than the inside of my house. Straight to bed afterwords, of course. I stayed with her and we watched Jimmy Fallon funny hashtags on YouTube.

On Thursday the 27th Kate had her first day of "school" with a tutor at home. She lasted a whole 40 minutes sitting up and concentrating.  She is coming again tomorrow so today will be full of homework. And that's only one class. Her teachers have decided which things she actually needs to turn in and which things she can skip. Her tutor said none of her teachers were worried about Kate and her grades. She's a straight A type of girl.

Yesterday Kate had a couple friends come and visit for a while. They brought goodies and Kate introduced them to 5 Crowns, a Poll family favorite. She had a great time, all smiles. As soon as they left it was time for a pain pill and lay down for a while. Every time someone asks how she is feeling she just says fine. I guess that is what we all do to a degree. Life and body can be falling apart and we all just smile and say fine. Kate has decided to sleep with me a few times. Honestly it's rather nice. I don't have to get up twice a night to give her pain pills.

So tomorrow, Monday, is our two week mark. Feels like a lifetime ago. Kate has been itching, literally to get her dressing off. She convinced me that today was the day. So we gave her a shower and then sat her on the toilet all wrapped up while I tackled her dressing.

We were given little pads, similar to alcohol pads, that take off the sticky stuff that medical tape leaves behind. I was armed with those, scissors, and a warm,wet cloth to help this process be as painless as possible.

Kate watched Bolt on my phone while I worked away. It probably took 35 minutes. She has some steri strips that, will fall off on their own, that decided to keep some of the dressing. Hence the scissors. So much yellow sticky stuff on her back, we were laughing and being silly the whole time. Once in a while Kate would say, I can't feel right there, or that feels like a horrible bruise. Needless to say, that is why we took our time.

The incision is incredibly thin and looks so much better than I thought it would. I think this will be a very nice scar. There's still some marker and sticky goo here and there, but a few showers will help take that off.

Looking Good!

We are acting a little more cautious again, even her hair laying down on her back kind of hurt. Small steps, but we are getting there!

HOME!!

Hanging out with Baggy

So happy to be home. Kate needs help laying down, sitting up, and walking. We have gotten pretty fancy with the pillows and getting her comfy, it's an art really. I think we finally have it down to a science.

She still gets nauseated at times and dizzy for sure. She said she can't understand why she has no energy. But she has more energy than she realizes. I have gotten her laughing pretty hard a few times. So, so good to see. She tells me I'm killing her and we have to wait a few minutes for her to breathe so she can move again.

We may or may not have more than one cat in the house....needless to say, we do not have a lap cat. But this guy, Baghera or Baggy,  is getting really close. We call him our next to our lap cat. Kate loved having him close to her. Much better than having a cat jump on her, which may or may not have been this same cat.

Peace Sign from the Princess

After all the arranging of pillows and blankets and cushions for Kate's bed, I started calling her Princess and the Pea girl. Bed is now a solid thumbs up. Just need to make sure she changes position often enough.

Sometime she just wants to hold my hand and have me sit by her. I've watched more Donald Duck, Goofy, and Pluto cartoons in the last two days than I have in years. We still have pain pills every 4 hours. That includes waking up around 11 and 3 am every night. Up again at 7 and so on.

She has started taking a few steps on her own and her balance is actually decent. But she still gets dizzy and feels like she has no energy. One big issue we have run into is her height and that fact that she cannot bend.  Washing hands, she desperately wants a higher sink. And brushing teeth is a joke. She has to use a cup to rinse and spit. She needs a house especially designed for her new body.  Loving this time with her. She is as funny and witty as ever. How I was blessed with such amazing kids I will never know. Abby and Noah have been cleaning the house, doing anything asked of them. Both wait on Kate left and right. So blessed. I have been trying to live my life a little differently the last few months. Living each day in the moment, not thinking that some time in the future will be better or if I just had this or that I would be happier. No, live in the moment. Appreciate each moment and day. Some days its easier than others. I am also trying to live with gratitude. Also takes practice.

Kate starts with a tutor on Thursday. Test run to see how long she can sit up and focus. Will likely have to build up to a full two hours. Thank you to everyone for your thoughts, and prayers.

Out of ICU

A visit from Noah

We moved Wednesday night out of the ICU and into a really nice room where I don't have to buzz in and out all night to use the restroom. Small things mean a lot when you're up all night. They took our her central line but she still needed to be on oxygen for the most part. We did more breathing exercises and she slowly weaned herself off the oxygen. Which was nice, because she hated it.

The other kids came to visit but Kate was usually pretty out of it. We had a time adjusting her pain meds. Finally found the magic combo that kept her relatively comfortable but also kept her breathing and able to wake when she needed to. She had her foley removed and was forced to get up and walk. The first couple times were pretty brutal.

On Friday we were told they needed another X-ray of her back. We went to X-ray and she had to stand up during the procedure.  They put a protective apron on me so Kate could use her arms to balance on my shoulders. I'm pretty much her crutch given our height difference.

X-ray 

We finally got the okay to go home but Kate was nervous about the couple of stairs I have going into my house. Physical therapy came and took us to a stairwell so Kate could practice going up and down. She did wonderfully. It calmed her nerves and we packed up. We got home around 5 pm.

We had the blow up mattress from her hospital bed put on her bed but she hated it. I finally put two doubled blankets over it and she was comfy. But, it kept making her slowly slide to edge of the bed. She has found herself in my bed a couple of nights as well.  I finally found the right combination for her bed. One egg crate mattress, and two thick blankets doubled under sheet. Yay!

Ready to go home

Our Stay in ICU

Not quite awake yet

After we talked to the Dr we were led to the waiting room up on ICU. You have to pick up a phone to be buzzed into the ICU unit. In the waiting room you can see patients being bought onto the floor. They said we would see her go by and then it would be another 40 minutes or so. We did see her go by, I ran to the window closest to her. She was still intubated, which I hated seeing. So dumb, I'm a nurse. But seeing all of this on my girl just feels different. Finally we were allowed to go into the room. She was no longer intubated when we saw her. She had two IV ports in both wrists, a central line in her neck, and an art line in her left wrist monitoring her blood pressure. Oxygen on, pulse oximeter measuring her oxygen, and pads on her chest measuring how many respiration's she was having. This was became our issue. Breathing deeply hurts. 

Art line and IV  

Kate did kind of wake up, enough to us that she hurts. Excruciating pain, that is how she later described it. It took a few minutes to get the narcotic from the pharmacy for her PCA so we were finally able to give her some IV morphine. It helped somewhat, but I have to say those first 24 hours were rough. There is absolutely NOTHING worse than seeing your child in pain and not being able to take it away. The second night I thought she was asleep, I was leaning over her, holding her hand and I said out loud that I would trade her this misery if I could. She never opened her eyes, but she said that wouldn't be fair and she wouldn't want that. I told her I would still do it, I love you so much. She just squeezed my hand.

There is one chair in the room that kinda lays down like a bed. It wasn't too bad honestly. ICU is full of machines going off all night. Here is where being partly deaf works in my favor. I tell Kate to tell the nurse to get me if she needs me and I simply turn over. Sounds gone. The biggest bummer was that to use a restroom I had to leave the ICU completely, which means having someone beep you in and out. One time I was coming back into the ICU, I pick up the phone to say I'm the mom of this patient, yada yada, and the lady, who I can see through the glass on the door, looks at me, says her name and then follows up with "I see you." The door opens and in I walk. As I am nearing her desk it dawns on me that someone else had opened the door with their badge, and the lady hadn't said "I see you," she had said ICU. I'm half embarrassed and half laughing at my stupid, tired self when I reach her desk. I apologized for just walking in and told her of my confusion. She was laughing at my stupidity as well by time I walked away. Marci on little sleep is not a pretty thing.

Every time it was time for a medication or pulling out her drain,  Kate would ask if it involved needles. This poor girl had tubes in both arms and her neck. But as long as we said no needles involved, she was fine. 

No one deserves what she has gone through, but I sometimes get so angry that such a kind hearted human being is being put this. Yes, I know, maybe that's why its her or maybe it makes her the kind person she is. But for right now, I want to be mad about it. 

Side view

X-rays post-op.

All straight now

 

Monday October 17th Surgery Day

Hair all braided and ready to go 

The night before surgery we had aunt Traci here to french braid Kate's hair.  I picked Kate up last Friday for her last day of school and the second we stepped out of the office she said "I'm nervous." First time she has said anything about being apprehensive about having surgery. I did what I could to calm her fears, but it didn't help that we were on our way to Rady's to get her blood drawn.

You have to know that this girl HATE's needles. With a passion. We got called back to get her blood drawn and she told the phlebotomist she was nervous, they told her to look away. She said it's easier if I watch. And she did and it was fine.

We had to be at the hospital by 6:30 am and Kate was straight out of bed. Traci and I were the tired ones.

Since Kate had mentioned she was a little nervous I had told the anesthesiologist and she suggested a little pre-surgery medication to calm her nerves. Turns out it was versed. That stuff is strong, and tastes terrible, according to Kate.  She started getting little loopy, we even recorded a couple little videos. She was laughing, we were laughing, good way to start the day. When it was time to go in she just waved and smiled and off she went.

Happy on versed pre-surgery 

We were walked out the waiting room and that's when I lost it. Those kind of tears that are so hard and fast it literally hurts your throat because you're trying to stop yourself from crying. Traci was my rock.  I had asked the liaison, a nurse who keeps families connected to the what is going on in surgery, that I need just a thumbs or something every two hours. She was very accommodating. Once she was 15 minutes late, luckily she gave me her number. 7 hours is a long time to wait to know if your baby is OK.

We finally got the call that she was finished and we went in to talk to the Dr. He told us that everything went fine. She had a slipped disc in her lower back that needed to have more work done on it than the rest. She was fused from T4 all the way down. That is a long, long incision. More work was done on her left side so there might be more swelling on that side and more side effects.

On her way to surgery

Scoliosis Update September 2016

We went in to see Dr. Newton again on September 6th. I have been meaning to post about that visit since then, but it just felt too hard to do. Apparently denial doesn't make things go away so here I am.

To catch up, Kate did have a pulmonary function test in May. It showed that she is breathing at 60% functionality. Between that and the two medications for her heart, one slows her heart rate, the other lowers blood pressure, she is one easily tired kiddo. We spent the summer just doing our thing. Kate can't sit on the ground for any length of time, or sleep laying on her back very well. But other than that we had an uneventful summer.

At our doctor visit on the 6th they took more x-rays of Kate's back. The curvature of her spine has gotten significantly worse. She was at a 44 last spring and is now at a 54. You do surgery at 50.

Kate is super excited! She gets out of PE for at least 6 months. Never seen a happier girl. She is literally counting down the days left of school and of PE. She can't ride any crazy rides at Disneyland for at least 6 months also. Definitely going to get a day or two in there before surgery.

Surgery is scheduled for October 17th. She will have an MRI of her back and another pulmonary function test before the surgery. Straight rod in her back. This will affect her hips, put more pressure on them. So the hip surgery we were thinking that would happen when she was in her 50's, might happen closer to her 30's. The areas above and below the rod will still be susceptible to issues due to her collagen being so wonderful. Her breathing should improve somewhat but her concave chest will at some point need to be addressed. One problem at a time, right?  Possibly some time in the ICU depending on her heart, then around 5 days in the hospital. 3-4 weeks at home afterwards depending on how she does. No brace, no physical therapy at this point.

This is what her back looks like now. She rarely complains of pain, unbelievable. But when she does we know it's serious. You can't tell by looking at her, but I can feel it when I run my hand down her back.

Lots to do before the 17th. Updates to follow. Prayers welcome.

Scoliosis Sucks!

Because Kate is limited in what she can do physically, she is now doing archery. She really enjoys it and is doing well at it.

Kate should have been wearing her brace for her scoliosis but she went on strike in January and started refusing to wear it. She would put it on at night only to rip it off and leave it on the floor by morning. At first it was just here and there, but it gradually became straight up absolutely no. She found her voice and let us know she was done. It just hurt too much and she basically said she would rather have surgery than wear it any longer.

Looks like she gets her wish. She went to her back doctor last week and it turns out she is still getting worse. AND apparently the brace only had like a 10% success rate in preventing surgery anyway. Very annoying to find out after the many painful days and nights in her brace. Her new number in her lower back in 42, up from 38 I believe, last fall. They normally do surgery when the number hits 50. In addition to the sideways curve, it is also curving in toward her breastbone, which likely impacts her heart and lung function. Yay, right?!

The surgery to correct it would be a fusion of her back, likely almost the entire length of the vertebra. The downsides would be that she would not have any further growth there, and she would lose flexibility. The upside is that she would not have pain, the risk of further complications from further bending would be eliminated, and she would get to stop wearing the brace. Kate is thrilled about this part. The surgery is not without it's risks. There could be nerve damage, and her cardiologist would have to consider how it will affect her heart. There aren't really other options so we have to move forward with the surgery. She will still be able to do archery, but there are other activities that she will  not be able be limited by lack of flexibility.

Her doctor wants her to wait another 6 months before having the surgery. One reason is just to recheck her back and make sure her x-rays are truly what they say they are or to see if the bending stops on it's own. It's very unlikely, but fusion is permanent so it's better to be certain. We will probably not wait too long as her back may continue to get worse with makes more straightening they have to do in surgery. We will probably wait until the end of summer since the surgery requires a week or so in the hospital and another three weeks at home before she can resume normal activity. There are tests to be run before she can have surgery. She needs to have a pulmonary test, her regular EKG and cardiac echo, we need to talk to her hip doctor, etc. Everyone who has been involved with her care, with exception of her eye surgeon, will have to be consulted with and involved in the surgery decision and care. First of these appointment is June 3rd with her EKG.

I won't lie, been a rough start to the year between this news and my dumb Meniere's. Here's hoping the rest of the year is awesome, the surgery goes well, the pain ends, and heart stays stable. Insert animal sacrifice and multiple prayers here.... make that a fruit,veggies, and plant sacrifice. Kate is a pescetarian, no animals should be harmed, even in jest.

 

Expander is Out!

Kate got the dreaded expander out of her mouth today. She had to hold my hand the whole time. She is now being fitted for a retainer she will wear every night. She chose one with a ying and yang design on it. So very Kate. We got a donuts to celebrate, turned up the music and sang a song all the way home.

So she is now 5 7" which is towering over over her 5 4" mother and her 5 3" older sister. Noah is still the tallest here. It has been a while since I updated which is a good sign. She spent a few days with cousins from Utah at Disneyland in January and went swimming with some cousins the first of April in Escondido. February and March were full of school and life as usual. I was out all of February and most of March, dumb Meniere's Disease.

Quick update on Noah and Abby. Noah made the JV tennis team and loves it! He and Abby are still doing robotics and have traveled to Utah to a competition. Abby and I went to Japan for her graduation gift last week. Tokyo, Tokyo Disneyland, and DisneySea. Fantastic experience.

On the Brightside

Kate had an appointment on Monday with her hips doctor, new X-rays were taken and lo and behold her hips look alright. The angle on the back film was making it look as though she had protrusio again. So that is a huge, huge, relief. But, the doctor did say that the lines between her femur head and pelvic socket weren't very thick, meaning it might need intervention sooner than he thought. Right now we are hoping for sometime in her 40's. That used to be 50's or 60's. You know what, I'll take it. With her aorta enlarged and her scoliosis so bad, I can put hips on the back burner for a while.

The rest of it...expander gets put back in her mouth next Tuesday. She see's her eye doctor at Shiley Eye Center next Thursday. This coming Friday she gets her new back brace to see if we get a bigger improvement on her scoliosis. X-rays for that in four weeks.

It's officially alright to tell me to hang in there, all that gooey crap. But please don't feel obligated, I don't actually want to hear it. I'm just saying I might not turn Hulk on you now as opposed to a few days ago. It's a start people.

Scoliosis and Worse

So yesterday started with being sad about Kate and her orthodontics appointment the day before but it picked up a little bit when we saw this beautiful rainbow on the way into her scoliosis appointment. But then we had to go inside, and killed the whole thing.

Kate has a new back brace and we went in to have X-rays with and without the brace on to see how it was working. She is an absolute fan of those little paper shorts she gets to wear every time we go to get X-rays. Luckily she got a gown to covers those beauties. This is a serious X-ray machine. We did shots with and without the back brace on. Then we went to our little room and waited.

Kate is reading constantly, but it's on her phone lately and drives me crazy. Why I think a book is better, I don't know. Weird Marci-ism I suppose. I brought Goose Girl by Shannon Hale to tempt her with and we got in three pages before they opened the door and came inside.

Dr Newton, two residents, and the nurse. Team effort apparently. He does a physical exam and has Kate bend over and measures her back while he tells me that her back looks really good on the outside for what is happening on the inside. I'm like, excuse me? Her back has gotten worse, like leaps and bounds worse.

Last March when she had her last X-rays taken, her top curve in her back measured 27 and lower curve 25 without her brace on. Now, her back is 36 and 37. That's 8 months to jump 10. She also grew almost 3 inches during that time.

We need to go back to Scope and get the brace fixed with some padding or something to get us a better result. With the brace on the number go from 36/37 to 32/32. It needs to be better than that.

So at this point I am having that inner panic thing going on, I really thought her back was at least holding steady, but now this. The two resident doctors are looking Kate over and playing with her brace and I am literally freaking out inside.

 My first reaction in a crisis is to make a plan and to figure out what the future possibilities are. So I asked Dr. Newton what our numbers have to be before the brace is no longer the best option, hate to throw the word surgery out around Kate, and he said 50. At our current rate, that could be around a year from now.

I'm letting that sink in and realize he's about to leave and I haven't asked him about Kate's left knee that she told me hurt her the day before. I know it's not his "area" but when I had his 2 minutes, I figured ask away. He had Kate lay down and put her leg through a series of range of motion tests and she did fine. Dr. Newton was mid sentence telling me it was probably nothing when he stops and says 'wait a minute' and takes the X-ray papers out of my hands and looks them over.

And this is the moment things fell apart for me. Recap, Kate has had bilateral hip surgery for protrusio, a condition where the femur heads start to push their way into the pelvic cavity. She had both femurs broken, turned, and bone taken off the sides to strengthen the inside of the pelvic floor to stop this from happening.

Left hip, you can see it on the X-ray, her femur head is pushing into her pelvic bone. You know that lump you get in your throat when you're about to burst out in tears but know you really can't? Hit me something fierce. A mix of fighting that lump and pure anger. The words going through my head are of the very angry, colorful variety and my thoughts were of my punching bag that I haven't used in forever.  Dr. Newton was telling me to follow up with Dr. Wenger and that we will see him again in 4 weeks and I am just nodding, digging my fingernails into my other hand just trying to hold it together.

We take our papers and go to check out and make our next appointments with Dr. Newton and Dr. Wenger. Kate is sitting on a chair and the lady checking us out took forever. My eyes are watering and I am struggling the whole stinking time. Of course it was taking forever. Finally, I got Kate and we started walking down the hall to the elevator. I asked Kate if she knew what Dr. Newton saw on the X-ray and she blurted it out like nothing, 'Oh my femur head is going into my pelvic bone again, on the bright side, if I have to have another surgery, at least I'll get out of going to school and gym class.' This kid.

At the end of the hall was a restroom so I left Kate outside the door with her book and I went in and let it go. I cried hard for about 2 minutes. Then I cleaned up and walked out like everything was just dandy. Kate was dandy. We were down the stairs and almost to the car when I burst into tears again, saying I'm so sorry, I'm so sorry, because there is this guilt, this horrible, crushing pain in my chest because I must have done something wrong when I was pregnant with Kate.  Kate came and gave me a hug, patting my back, and telling me over and over again that it's going to be OK. She finally said, 'If  I'm OK, you should be OK, Mom.'

I'm still off and on tears today, but at least I waited until now to write this or it would also be filled with all those fun words and phrases I had flying through my head yesterday.  Cardiologist tomorrow to check heart rate from new medicine and change dose as needed. Dr. Wenger and hip check up on Monday now. Orthodontist on Tuesday. Oh, my yearly yup I 'm still going deaf hearing test is on the 16th.

I get it, I really do. All those inspirational quotes about pulling through, hanging in there, blah, blah, blah, I don't want to hear it today. Maybe tomorrow or next week. But today, I deserve an angry, pissed off, hurt and sad day. I'm taking it. Sorry mom, I know you hate that word. Love you.

Orthodontic Update

As I have mentioned in previous posts, people with Marfan Syndrome can have narrow palates and issues with their bites. Kate has already had an expander in for a few months, she then had braces to help straighten a few teeth and they look great. But, there's always a but it seems, a week after she got her braces off last December, her orthodontist decided that he had been through enough of this life and took his own. Shocking and sad to say the least. How did this affect Kate? Well, his office tried to sell and hire new doctors for several months and Kate was seen twice by two random people. Her orthodontic care had a major lapse in care. Completely my fault. I should have been more on top of getting her seen at a new office.

We went to a new guy on Monday, really nice and just happens to deaf in his right ear also. There are more of us out there than you realize, certainly more than I did. The news he gave us was not great. Whether she has grown and changed things or the expander was not left in long enough, we don't know for sure, but we do know she needs an expander in again. 6 months this time and followed by a type of retainer to make sure it sticks this time. Eventually she will need braces as well. Joy, right. Kate still has 6 baby teeth on the bottom and 3 on top.

All I kept thinking was you've got to be kidding me. It's like starting from scratch and I hate, hate, hate to put Kate through all that again. I don't think I have ever thought the word crap over and over again so many times. They put in spacers and next week we get bands on her teeth, and the following week we get the expander in. Here's the kicker. Walking out to the car I noticed Kate was limping. She said her left leg had been hurting off and on the last two weeks. The pain was around the bottom and back side of her knee. I figured we are seeing Dr. Newton, scoliosis doctor, tomorrow and I would just mention the knee and see what he thought. Was not prepared in any way for what he found.

Shizzy Cardiac Echo Results

That's right, shizzy. People who know me know that I have my own vocabulary at times. Can I point out the difference between this picture and the one on the top of this blog? Kate has become a totally different person since we started this journey. I can't believe we have been doing this for so long, and yet I can barely remember life without Marfans.

 I honestly thought we would walk in there and they would say that Kate had grown, she is now 5 6", and that her aorta had stayed the same size, or by some miracle had a smaller Z score because her body was now so much bigger and it had only grown a little. This happened last year, so I wasn't completely bonkers for thinking this.

Unfortunately, I was way off. A little lesson first. A Z score is basically measuring the dilation of the aorta. Her last Z score was 3.4 which was one year ago almost exactly. Her new Z score is 3.8. A change of .4 in one year. Definitely not the results we wanted. We asked a few questions and the doctor said at a Z score of 5, surgery is indicated. So I said we have until she reaches 5, and he shook his head and said no, we start talking surgery at a Z score of 4.5.

When Kate was first diagnosed, we knew this surgery was a possibility, but wasn't a for sure thing. And I had hoped IF it had to happen, it would happen later in life. Now we are just trying to postpone the inevitable. Very hard to hear, very hard to keep it together with Kate sitting right there. She was asked if she understood and she said that she did.

To slow down the progression we are going to add a medication to her current medication that lowers her blood pressure. One side effect is depression. That is the only one that I will really be aware of. Kate is such a happy and upbeat kid, I'd hate anything to change that. This new medication will help lower her heart rate, but we need to lower it only enough so she is still within normal heart rate parameters. She is wearing a heart monitor for 24 hours to get a baseline heart rate, then she will start a low dose of the new medication. We then go back in a few weeks and recheck her heart rate and increase medication as needed. This will likely happen 3 or 4 times until we get the correct dosage. Her positive on this, at least she doesn't have to wear the new uncomfortable brace for 24 hours.

We asked about her PE class at school and her doctor is convinced that the benefits outweigh the risks. We then had a several minute conversation about what Kate can and cannot do again. I think she gets it, but it's hard when all of your friends take off running and you cannot. So, that is kind of stinks. Least of my worries at the moment though.

Here's what is coming up. X-rays and doctor visit to see if new brace is working on November 3rd. Appointment with her cardiologist on November 5th to check heart rate. A visit to her eye doctor on November 19th to check on her lenses. We might have to throw in a weekend at Disneyland. Serious group therapy right there. Prayers are always welcome.

EKG and Cardiac Echo

 Kate and I went to her yearly EKG and cardiac echo on wednesday. The EKG is a breeze, in and out in 5 minutes complete with sticky sticker removals.

On the way into the hospital this time Kate and I were talking about how we have driven this road so many times it feels like we could drive with our eyes closed. Well, I could. For some reason the accident came up and I retold her the story of where I parked that night and how I ran across the street and burst into the ER and started banging on the window and yelling that my daughter was here somewhere.  She said they probably thought I was crazy. Haha. I told her that's probably why they gave me a person who didn't leave my side for the first 3 hours.

 But then Kate told me some things about the accident I didn't know. She said she fell asleep at the accident site for part of the time, that she didn't remember talking to me on the phone there at all. She also said that she woke up in the ambulance and was really fighting the paramedics when they tried to start an IV. She hates needles.

She remembers me coming into the ER room she was in, but she thinks she slept for a time because she didn't remember leaving the ambulance. None of these memories seem to her upset her, unless she tells me about the needles. Amazingly brave kiddo.

Back to our tests, we sat in the second waiting room for a while reading and playing games on our phones together. It sobers you up fast seeing all of the other children and parents in there. There's that story or saying about if everyone put all of their challenges on a table, people would still reach down and take their own troubles back. I still think that is true. Don't get me wrong, I'd give anything to take Marfans away from Kate. I still find myself going through those stages of grief, I mostly live in bargaining. Saying in my head and sometimes aloud all of the things I would give up or go through for Kate to not have these health issues. God hasn't taken me up on any of them yet, but I keep trying. 

 Time for the echo exam finally. Tangled was playing, there's always a movie on which is nice as the test took around 40 minutes. I used to try and figure out what I am looking at, but I only see obvious things and I convince myself I see things that likely don't exist. It is pretty cool to see all four chambers and valves seemingly doing their jobs perfectly.

The test took long enough that I thought Kate had dozed off. You can barely see in the last picture, but her eyes were closed. I asked her about it after the test and she said she nearly fell asleep but she thought it might change her heart rate and wasn't sure she should let herself. Smarty pants kid. We left the test absolutely starving so we grabbed a pizza on the way home.

New Back Brace

 Kate and I went in on Monday this week to get her new brace fitted. It doesn't seem to go as high as the last one, but it goes down over both hips where the last one only went down one side. Kate has two different curves to her spine, an S shape. Her old brace put pressure on both curves going in opposite directions. The new brace is only putting pressure on the lower, larger curve with the hope that the smaller curve above will straighten some by default.

Because it's a new brace with new pressure points, Kate gets to start the brace wearing adventure all over again. It hurts to wear so she is wearing it mostly at night at first, oblivion is nice if you can get away with it, then she will start wearing during the day slowly. Eventually it will be on for 20 hours a day.

She ended up choosing the same pattern for this brace as her last one. She is actually becoming a little fashionista as of late and I think this design is as close to white without being boring as they come. The straps are black this time which might put a damper on some outfits.

As per usual, Kate is a trooper. She never ceases to say something positive about her situation. Her brace gives her fantastic posture, or so she tells me. Love this girl.

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