Life On Paper

 I realize that my life on paper really stinks. I won't even write it down for everyone to read, it really is rather depressing. Kate's diagnosis, my hearing, headaches and everything else, it's rotten, I won't lie. But the truth is, I'm happy. We are always told that attitude is everything, deciding to be happy when things suck. Well, guess what, it's true. I am on a site for those who have experienced a sudden loss of hearing and it's amazing to read about the different attitudes on there. Some people curl up in a corner and cry, change the way they interact with people, become depressed. Then there are people who seem to roll with the punches. They joke about how they hear things incorrectly, how they made a total fool of themselves at the store, etc. and they are happy.  Life isn't fair.  It just isn't. I can look at every family I know and point out their struggles. We all have them, we all signed up for this ride we call life.

Kate, she has an amazing attitude. Part of that I think is because she's a kid, but part of it is because we have learned to point out the positive things, and when the negative stuff happens, we say that really stinks, we hug and cry, and then we go do something fun. She's an amazing kid, all my kids are. I look to them for cues, guidance on how to live my life.

The day I found out I was losing my hearing was the same day of the shooting at the elementary school back east. Talk about putting things into perspective. I walked out of clinic, stood outside and listened to all of the noises around me. The wind was blowing. I remember thinking, I will miss this. I took a deep breath and walked to my van. My music came on as I started it up, I thought wow. I will miss this the most. Yes, I know, the sounds of the kids voices, the birds outside, the waves hitting the beach, there are many sounds to choose from, but my get me happy and dancing pick-me-up has always been music.

I told Abby that day that I was most likely going to go deaf. She started to cry. She said she couldn't believe that I would never be able to hear sounds at Disneyland again. When she said that, and I looked into her red eyes, I thought this is dumb. I am making my baby sad. I stopped right then, looked at Abby and forced a laugh. I said I guess we need to go a lot so I have every sound at Disneyland memorized! She instantly perked up. That was it. That was all I needed to know that how I handle this will affect everyone around me. So, I'm not sad. I'm really not. I get angry for a few minutes here and there, but I'm good, really. How can I not be? I am so very blessed. My life is freaking amazing!

I am in charge of the book at book club tonight. I started to find some discussion questions and looking at quotes from the book and just got thinking, which started this rant on here. The book is called The Fault in Our Stars by John Green. I read it  some time ago, and it literally said things I feel. Things about pain, about changes in life you have no control over, about living to the fullest. You should read it. And if you do, and you don't love it, you need to be seen by a doctor, there's something serious messed up with you. haha

Google quotes from John Green and this book.  So many great ones. Just a couple that spoke to me.

“You have a choice in this world, I believe, about how to tell sad stories, and we made the funny choice.”
 - John Green

“Even then, it hurt. The pain was always there, pulling me inside of myself, demanding to be felt. It always felt like I was waking up from the pain when something in the world outside of me suddenly required my comment or attention.”- John Green

This will be on the wall of my book store. As soon as I get my book store :)

“Sometimes, you read a book and it fills you with this weird evangelical zeal, and you become convinced that the shattered world will never be put back together unless and until all living humans read the book. And then there are books like An Imperial Affliction, which you can't tell people about, books so special and rare and yours that advertising your affection feels like betrayal”
― John Green, The Fault in Our Stars

Marci's Update

Here we sisters are at Morgan's wedding in December. If my mom were in this picture, I'd have all my besties in it.

I have noticed in the last year or so that not only am I not hearing things, I'm not understanding them. I went to a movie with my friend Kathy Konold, I kept leaning over and asking what was said. I do it at church too. Unless the person at church is standing at the microphone when giving a prayer, the only way I know it's over is the big amen at the end.

I had my hearing checked in December and sure enough I have been losing more on the "good" ear. She suggested I see Dr. Harris at UCSD. I have seen him before about the tinnitus, but figured it couldn't hurt to see him again. Today was my visit with him. Apparently you can have Meniere's Disease without having the attacks normally associated with it. Usually after an attack, a person with Meniere's can have some hearing loss. I don't have "attack's" like others have described. I do have dizzy spells, pressure, and pain occasionally. I guess this is my version of an attack.

Several things can happen at this point. I can continue to lose my hearing gradually over time. I could possibly wake up and find that my hearing is terrible or gone one day.  People who have this type of Meniere's can have fluctuations in hearing from day to day, but it's not a good thing. If that starts happening I need to go in asap and get steroid shots into my ear and possibly take steroids orally from then on out as well.

I have been put back on a low sodium diet, which by the way is really not fun. I have also been started on a diuretic and potassium supplements that I will take from here on out. I am literally a walking pharmacy. I shudder to think what my liver will be like by the time I'm dead. I will be the only Mormon out there with liver failure, haha.

Believe it or not, there is good news. As long as the nerve in my ears stay 'alive', which they both are currently, I am a candidate for cochlear implants. For some reason I had thought all these years that it wasn't an option. So, the good news is I may not ever be totally deaf. Well, if I get the implants I won't be. I am still planning on learning sign language. I cannot express enough how much I enjoy using it over straining to hear what people are saying. I find myself kind of checking out more and more in social situations. It's just easier to read a book, close my eyes, whatever, than it is to try to listen to people talk. The Dr. did say that the cochlear implants can help some people with tinnitus and hyperacusis (sensitivity to sound). That's a quasi silver lining.

I started taking boxing classes a little over a month ago. I love it. I am horrible at it, and it's a lot harder than it looks, but I love it. I was told today, however, that I can't spar with people.  All I said was I started boxing and my Dr, said NO before I said anything else. Decided training is alright to do, but not against another person. I was never really planning to get in the ring, but I have been sparring a little. No more of that. Still in school, last class is in June. By July I will have a degree in Health Informatics.

UPDATE

Kate's eye surgery is never happening.  Ok, it is, but no idea when. Ethan is convinced they are completely ignoring his calls we have called her eye surgeon so many times. Kate is beyond ready to get it done, as are we.  She needs new glasses desperately, but they are $400 and as soon as she has surgery, which should happen any day now (hahaha), she will need a different prescription. Ugh!! 

 Kate and Huck. He's such a sweet dog, who knew I could learn to love a dog!  Kate just loves him. He is quiet and playful. Destroys everything in sight, but I'm told that's a puppy thing.





Huck wiggles his tail so hard when he sees the kids his whole bottom half shakes. So stinking cute. Kate is the queen of taking him for walks. I find myself stepping back sometimes and marveling that this is the same girl who was in that rotten body cast. Who thought standing next to her walker was a huge accomplishment, and it was.

On the bright side, Kate is walking really well and running is becoming very natural looking. Kate is seeing her hip surgeon on March 13th to discuss surgery to take out plates and pins in her hips. She is also seeing her back doc that same visit, I believe. Pray for things to be the same. The hardware will likely come out this summer.

Kate is quite tall. She is 8 years old and wears size 12 jeans and shirts. She even wears a pair of 14's. She wears a women's size 6 shoe. Abby, Kate and I all wear about the same size. Completely share clothes with Abby now, I do. Kate is right behind. Crazy.

Eye Surgery Postponed

So here's the deal.  It's been recommended, because of Kate's other health issues, that she have her eye surgery done at Rady Children's Hospital. Dr Heichel, her eye surgeon, does not currently have privilege's at Rady's.  He is trying to get them, it's a several month process and he is several months into it, so the call may come tomorrow or 2 months from now. I think it's best to not push the surgery date and have it done at Shiley, I feel better about it being at Children's. No reason other than mother's intuition? Hopefully it will be sooner than later.

In the meantime, Kate is doing really well in 3rd grade. She had two friends over the other day and Kate was a good head taller than both of them. She has mentioned that she is the tallest in her class. It will just be this way through elementary I think. In middle and high school she will blend in better, although everyone will think she is older than she is. Can't win everything.

Eye Surgery Update

Hello everyone,

Right in the middle of my timed Medical Terminology final, I got a phone call from Dr. Heichel's assistant at Shiley Eye Center.  They spoke to Kate's cardiologist and it was decided that the surgery should take place at Rady Children's Hospital. The surgery date is currently unknown. I will post when I hear something.

I think this is a good thing.  I was trying to give her medical history to the RN at Shiley and I just cannot spew out that much information in a coherent way.  The Dr.'s should have access to her medical records at Children's which is nice. And just in case, it's a full scale hospital.  There won't be a just in case, but still. Just in case.

Off to La Quinta Resort tomorrow to bake and swim. Have a fun Labor Day weekend everyone.


*Aced my final, by the way.  Yay for the little stuff.

Eye Surgery Date Change

Eye Test

 New Surgery date is September 11th. I changed it because we have an early entry reservation to CA Adventure on Saturday the 8th, and yes, getting in to ride the new Cars Land rides before the crowds will be worth it.  I completely forgot about it when I scheduled the first surgery date. Fun before surgery as often as possible.

 

 Today Kate and I went to Shiley Eye Center for her pre-op appointment. We got there are 10, and left about 12:30.  They actually shuttled us to the first room pretty quickly, but then the inevitable stall out. They took Kate's vital signs and then we spoke with a pre-op nurse who gave Kate her own little bag to bring back to surgery. It was full of prescriptions that I need to go fill a few days before surgery.  She has to have antibiotic drops in her eyes every day for a few days before surgery. The nurse also attached a coupon for each prescription. Can't wait to see how much they cost me.


We then took a little tour to the surgery floor and recovery room where Kate immediately decided that surgery had once seemed like a good idea, but was no longer on her to do list. The anesthesiologist came out and talked to us, aka. me, because Kate had clammed up and was being rather serious about this no surgery thing.

The ever famous snack stand at Shiley

Right now she is scheduled to have surgery in the Shiley center, but given her distended aorta, the surgery may be moved to a hospital. We will find out a few days before surgery. They are going to be talking to her cardiologist to OK the surgery. Always a chance we will have to see him before surgery as well.

After the tour we were sent back down to get Kate an EKG and have her eyes measured. The EKG was fine, she is a pro, but she hates those sticky pads like no other. It took a lot of alcohol wipes and patience to get them off without her screaming bloody murder.

And then we sat, long enough for me to really start thinking. That is never good. For months I have been saying how I can't wait for this surgery, for Kate's eyesight to be improved. But at that moment, all I could think about was what if it doesn't go well and she ends up blind. I wanted to find her Dr. and ask him about the odds. Then, of course, I had this whole discussion with him in my head.  He couldn't possibly say that everything was going to be fine, they never say it in those words, lawsuits I suppose. So, in my head of course, I started yelling, "but are the odds in our favor?" And then I started thinking about Hunger Games and conversation started sounding like a movie. Thank goodness they came to get us for her last eye test. After we got that done, we were out of there. I was feeling rather guilty about the whole sticky pad moment so we hit the snack shack and ditched the rest of the school day.  HA! I know you wish I were your mother. :)

This weekend we are heading to the desert, to swim, get hot, swim, get hot, and repeat until Monday.

Eye Surgery and Physical Therapy

Kate went back to Shiley Eye Center on August 10th to have her retina's checked by Dr Goldbaum.  She needed to to have her retina's given the go ahead before we proceed with surgery on her lenses. People with Marfans Syndrome are at risk for retinal detachment. The hits just keep coming. Actually, I wish the hits would please stop. No more issues.



Miss Kate had to get her eyes dilated again. The only respite was knowing that after you get dilated, you get to go to the snack cart outside. She chose Doritos, as you can see on her lap.  She digs the shades when things get too bright.

 Kate has her pre-op appointment with Dr Heichel, the surgeon who will perform her lens replacement. That had first told us that she would have her eyes done separately, a couple weeks apart at a time. Now, because she has to go under general anesthesia, the Dr has decided to do both eyes at once.  I'm quite happy with that decision. She will wear plastic lenses over her eyes to keep her from touching them for 24 hours then every night for a week or so.

Surgery is scheduled for September 5th.

Kate is doing pretty well, but she still has some muscle weakness. She is going to physical therapy a few more times to try and build up her strength. I know this picture is small, but she is smiling so cute, I couldn't help but put it up.

School starts tomorrow, 3rd grade! Noah is starting middle school, and Abby is starting high school.  So wrong.