One Week...

It's been a week since our little family found out that Kadence would be having two surgeries.  The one week seems like it was a few months.  A lot has happened.  We processed the information first.  We had to break the news and explain it to the girls.  We then had to strengthen ourselves so that we could tell family.  We got even stronger and told everyone.  (Except for anyone in our church and I don't know that we will for a long time) It's strange to me that we needed to strengthen ourselves in order to tell others, but it was so important.  I worry far too much about people so when their worried, I worry.  When they feel bad, I feel bad.  I couldn't tell someone bad news and not be able to add their concern and worry on top of my already overwhelmed mind.  David and I both became OK far sooner than I thought we would.  We received many offers of help and questions of how to best help. I HATE getting help from people.  I seriously stress so much about the person giving service to me.  I worry that they needed money for something else, that they are already too busy to give time to me, that they have their own problems and shouldn't be worrying about mine, that I should be lightening their load not piling on it....oh the list goes on and on.  I really really REALLY struggle with getting help.  I had made a list of things to do and one of the things was to "humble myself and allow people to help me."  I figured that would be something I did a few days before surgery, but again it happened faster than I thought.  I made a list of things that could brighten Kadences day and make it easier as well as a list for the family and posted it on Facebook.  Every single day I have wanted to delete the post because I feel like I'm asking for a handout of some kind.  The truth is that I don't expect anything from anyone and would be completely fine if nobody did anything for us.  I just really have been working towards being less stubborn when I could use some support.  Having said how much I hate getting help I really do appreciate every offer, every prayer and every kind thought sent my way.  I think I appreciate it more than most and then I stress about not being able to show my gratitude.  I am so thankful for family and friends and for how supportive and kind they are to my family.  I even have a friend who is an independent consultant for Perfectly Posh and is donating all profits from now until the end of the year to us.  WOW.  I just don't feel deserving of this at all.  There are so many who need the money more than my family.  I was completely overwhelmed by her generous heart.  She is giving money from her household income to MY family.  How do you thank someone for that.  Even if we get $5 I am just amazed.  We have had a call from Ronald McDonald house and have set up our housing arrangements there.  It's only $15 per night which is so much cheaper than anything else we could find.  We stayed there for a few nights before and I am again amazed at the volunteers and the facility itself.  We have moved Kadences surgeries from May 19th and June 16th to April 10th and May 1st.  This decision was made after Kadence had a breakdown.  I just can't imagine her fears.  It has to be absolutely terrifying especially when your parents can't tell you that it isn't scary or that it won't hurt.  We would have moved it sooner, but we will be in Boston from March 28th- April 7th.  We'll then be home for two days and go to Salt Lake for 5 weeks.  I don't think we'll even recognize our home by the time we get home in May!  Because we moved it up, we will have a more complicated Spring semester at school but it is so worth it if we can cut a month off of her worry. We have had our school districts nurse contact us and has already told us what we need in order to get a 504 in place for Kadence for the end of her 2nd grade year and for 3rd grade.  We also have talked to the girls teachers regarding them missing so much school.  Shelbys teacher has absolutely no concern and will send us with some work we can do with her.  Kadence's teacher has contacted the nurse who has already talked with our care coordinator over at Shriners.  They have worked out a plan for a Salt Lake District teacher to come and teach Kadence for a few hours twice a week.  (Its called home and hospital)  We have seen what a huge bond our girls have.  I have always known they were close, but Shelby is such a strength to her sister.  She has said multiple times "I don't want to leave Kadence when she's in the hospital" and "I don't need to go anywhere, I will just sit with Kadence."  She also came up with an idea for a present that she really wants to buy her sister to help her feel better after surgery.  Its a toy dog that is from an app they play called Palace Pets.  She has wanted one just as bad as Kadence.  She told me one night "I just really hope that I can get Kadence a Palace Pet because I know she wants one really bad".  For a five year old not to ask if she can get one too and be so unselfish is truly amazing.  We have worked with their dance studio to allow her to still dance right up until Boston.  She will then go back in the Fall and be the class helper since she will be unable to dance. 


In one week I have learned that crying gives you a headache, but you don't get a headache from being positive.  I have learned how much people care about my little family.  I have learned how great the girls school and teachers are.  I have learned how generous and willing to help people can be.  I have learned how to allow people to help....although it is still beyond hard for me and I think I might have a stubborn relapse at some point.  I have learned that David is my everything and I can't imagine going through any of this without him.  He is my rock and my shoulder to cry on.  I have learned that I can feel I'm totally fine and seconds later find myself crying.  I learned that Kadence and Shelby are the most loving people I have ever met and they will always have a strong and special bond.  I have learned how truly blessed we are to be surrounded by such amazing people, doctors and facilities. 

Shriners Visit

On Wednesday we had another appointment for Kadence to go to Shriners.  We got to Salt Lake a little early so we stopped to play at a park.  

 We first checked in to get our xrays.  We weren't told that Kadence's xrays would be out of brace so we had her brace on.  This is a problem.  They like the brace off for hours if not a whole day before they do the xray out of brace.  (We just weren't told)  We took it off immediately and they decided to wait a half hour and then just take the xrays anyways.  We went to the clinic and that portion I will go into detail after the orthotic portion.  We went to orthotics to get a new brace molded for Kadence.  She chose a butterfly pattern with pink straps this time.  Its kind of intense because they wrap casting material on her while they mold it.  It dries quickly so they don't have much time to manipulate it.  David holds her feet and pulls them a tiny bit while one guy pulls her head to give some tension.  Then our dr and our orthotic guy do the molding.  Kadence is such a great kid and never ever complains during any of it.  

 Her face does start to go red because she forgets to breath while they do it.  

 We always tease her that the material they put under while they mold is what she should wear to prom.  We still haven't convinced her despite our efforts.  Then we told her that she could wear this as a necklace!

 Now onto the clinic portion of our appointment.  Because Kadence keeps getting sores pretty constantly right from the beginning of a new brace we have to try something different.  Her skin is just too broken down to have constant pressure on it.  She is also rotating clockwise and her left shoulder is rotating forward. The only other option we have is to do growing rods.  David and I knew that this was coming.  We were not thrilled but from the beginning when we got to Shriners they told us we would be lucky if we could hold off on surgery until she was able to do a final rod fusion at about 13ish.  We were hopeful, but knew that each cast and brace we did meant 4-5 months more without having to put in rods.  Well, the day came for him to tell us it was the only option.  We trust our dr a great deal.  He is amazing and is always learning new techniques.  Kadence hasn't regressed a ton in the past year while in the brace, but our xray results weren't very accurate because she was only out of brace for a half hour.  In the year while in braces 24/7 minus church, dance and bath she went up 5 degrees.  This isn't much but again it isn't accurate she would be a little worse.  This means that without the brace she would have gotten MUCH worse so we don't have the choice to do nothing.  Growing rods are our only option.  Because I knew this might be coming I started my research so I could ask appropriate questions.  There are the normal growing rods and then there is a new thing called the VEPTR.  I wasn't too fond of either and couldn't decide which I liked best.  Well, we weren't even told those options.  Her Dr would like to try something different on Kadence.  She is so skinny and her bones are so prominent that he thinks the hardware of the two previous mentioned options would be too bulky and would possibly have more complications.  He had gone to France recently and had seen a new type of growing rod being used.  It is a single rod and is attached with pins and screws versus being fused.  It is thinner than the other options.  The problem is that it has only been done on about 30 patients.  They have followed some patients 6 and 7 years and there have been about 3 problems.  All have been with the rod snapping under the tension and didn't cause any damage to the spine or the spinal cord.  This doesn't mean it won't ever, but the other two options have had quite a few complications.  He showed us before and after pictures and the difference was better than anything we thought we could expect.  There are of course risks.  At any time you add something to the spine and then move it, you are at high risk of something going wrong.  We agreed that this would be the best option for Kadence.  It will be a major surgery in which her back will be basically cut from top to bottom while the rod is attached.  There will be extra rod past the screws so that as she grows they can go unscrew the bolt, move the rod up a little, tighten the bolt and close her up.  This will be done every 6-10 months.  The other portion of this rod being placed is that Kadence will need halo traction beforehand.  

 What is halo traction you may wonder?  Well they will do surgery to put 4 screws into Kadences skull.  She will then have a metal halo that is attached to the screws.  This is so that they can add weights to pull Kadence a little straighter.  This is specifically important for the rod placement.  It will get her spine used to having a lot of tension and will decrease complications once the rod is placed.  It will also pull her to her maximum flexibility making it so the rod is placed and gets the most correction of her spine as possible.  Here is an example of a little girl in halo traction.

Kadence will be in halo traction for 3 weeks and then have the rod placed.  She will spend a total of 4-5 weeks in the hospital as long as everything goes as planned.  Then we will be able to take her home and care for her there.  My whole family will live in Salt Lake during this time so we can be close.  None of us function well without a member of the family so it is what is best for everyone, especially the girls.  The first surgery will be May 19th and the second will be June 16th.  We are hoping to get her home and have her feeling ok by her birthday.  She won't be able to participate in any physical activity for 6 months after rod placement.  They have to allow time for the spine to become strong. They had Kadence meet with a respiratory therapist to teach us how to improve her lung function.  She will work with Kadence while she is in the ICU and after as well.  I love this picture below.  Shelby was trying to "blow" just like Kadence was they had to breath in and hold it until the therapist told them to blow.  She is seriously Kadence's biggest cheerleader and the BEST sister ever.  

 Then we had to go and get pictures done so they can document the before and afters.

 This part makes me giggle...

 Kadence didn't really understand anything that was going on because she is just blissfully ignorant.  I was grateful because I wanted to tell her at home.  When we did she tried to be brave.  Then she all of a sudden started crying and said "It all sounds so scary."  We are not people who lie to our kids about things like this and we told her the good and bad of it.  I just held her.  That was the hardest part of all of it.  Holding my sweet girl and not being able to tell her that it wasn't scary.  The fact is, we are scared.  David and I are scared too and so is Shelby.  Shelby tried making her sister happy and then we brought her to dance.  We usually don't stay but did for the first half hour to make sure she wasn't going to meltdown.  I snapped some pictures because my sweet girl won't be able to bend her back at all after surgery and it breaks my heart.

 We ended up leaving for the last hour of dance and the whole time Shelby worked on making this for Kadence...

She did it all on her own without any help.  She made sure it was blue because that is Kadences favorite color.  She put it on her bed so she would see it and it would make her happy.  Shelby seriously is the greatest sister anyone could ever ask for.  She hates seeing her sister sad and will do anything she can to make it better.  

David and I were pretty devastated so we have been cautiously sharing with others until we could emotionally strengthen ourselves.  Well that has happened pretty quick.  We are confident in our decision and we know it is what is best for Kadence.  We wish things could be different, but they aren't so why stress and worry about it?  It is what it is.  We will now be able to focus on getting things ready and piecing together all the details.  Luckily we have 6 months to figure it all out.  We are asking that nobody talks to Kadence about her surgeries and please don't talk about it while she is around.  She doesn't have a good sense of time and we don't want her worrying anymore than she already is.  If she brings it up you are more than welcome to talk to her about it.  We have encouraged her to come to us with any questions she has, as well as Shelby.  It is confusing for them.  They are just babies still and can't understand fully what is happening or why.  It isn't like the final rod fusion she will have in which she will be 13 and understand better.  The risks are much higher because we will be reopening her wound every 6-10 months which poses greater risk of infection, the hardware could malfunction while adjusting the rod to allow for growth, etc. The growing rods are riskier than the final rod fusion will be.  We will still end up fusing rods when her spine is mature and the rod that is in will be removed.  That will be another bigger surgery.  All of the surgeries in between will be a small 2-3 inch incision and she will go home that day or the next day.  She will be able to resume all activities once the incision has healed as well.  We are now doing a lot better with the news although we are not happy with it.  I know this blog post has been jumbled and maybe hard to understand.  If you have any questions don't hesitate to ask.  I may not know the answer because we are still trying to figure everything out, but I will try to find it if I don't.  We love you all and are so grateful to have such a great support system.

Feeling Odd...

So this is quite possibly the most odd I have felt in a long time.  I think its what some feel like when an ex boyfriend/girlfriend moves on and finds someone new and you find out by the status update on Facebook.  Seriously it is that silly and I feel so immature.  I saw a friend tagged in a picture on Facebook and in the background was.....well...my old house.  Yes, I told you it was silly!  That is MY home.  It still feels like MY home.  It is so strange to feel somewhat odd as I see my house in the background of a picture.  The good thing is that is seems as though the birthday parties thrown there will still be amazing and the yard will still be full of fun for kids.  I'm glad that the house will make memories for new people as well as for my friends.  The other thing that is odd to recognize is that life moved on after we moved.  People go about their daily lives without much thought about "The Joys" or those "cute girls".  Its weird to me because not a day has passed that I don't think of someone from our neighborhood.  I feel like time is stuck still for me while everyone else is moving on with their lives.  We still don't know many since moving 6 months ago and haven't made any "great" friends yet.  We may have, but we don't know them well enough to know they aren't offended by us, that we can be our normal strange selves without judgment, that we can ask for favors if needed, etc.  None of this is bad, I'm not exactly sad....or happy.  I just don't know what I am feeling.  I just simply feel odd. 

A New Friend

Tonight my family had the pleasure of meeting Don Clarke and his wife Maryann.  As well as the Ogden, UT Mission President and his wife. (Sister and Elder Hiers)  Below is a picture of Dale, Connie, their 4 boys and Don and Maryann Clarke. 

There is a reason why this was a "picture worthy" moment.  Don Clarke used to be Grandpa Joys home teacher. (Ira Dale Sr)  At this time, Grandpa was a member of the church but was inactive.  There was drinking, smoking and no church attending.  This didn't keep Don from visiting anyways.  He didn't look at the imperfections of the family, rather the good in them.  He saw them for who they were.  He visited them because he wanted to and he was assigned to them.  He didn't avoid visiting because they weren't active and it might "be awkward."  Grandpa and Grandma Joy were living in Mitchel, Nebraska and Don was living in Scottsbluff, Nebraska.  This meant that Don had to travel about 30 minutes to and from the Joy house.  He still went monthly.  He was then made Young Men President in their ward and invited Brian and Dale to the activities.  Soon after the whole family started attending church.  Because of this one man, Grandpa and Grandma became active members of the church again.  This meant their 4 children also returned to the church.  There are now 12 grandkids that are members of the church. There are also 16 great grandchildren that have been born into active homes and some who are even members already. (If I can count correctly)  This one man is responsible for this many active members simply by obeying his call to go home teaching.  He easily could have put it off or made a million excuses.  He could have stopped trying after Brian and Dale showed up to the first activity with beer.  He could have chosen to try for a while and then give up when his efforts made no difference.  Instead he kept with it.  He befriended them and that is what was needed.  Don is now a member of the Quorum of the Seventy for the church.  He is a very busy man, but called and asked if he could meet with the family for a short time today.  David had to put off a school presentation, but we were able to make it down.  It was amazing to see the love and compassion in his eyes.  It was so nice to meet him and his sweet wife and hear stories about their family.  It was incredible to hear that he has told many different people all over the world about "The Joys."  He then explained that on Thursday he would be meeting with President Monson and he was so excited to tell him that he got to meet with us.  Then, as he choked back tears he told us that President Monson would want him to tell us that he loves us very much.  I know it is true, I hear it in many talks, I hear him say it himself during conference talks but this was different.  Hearing someone tell you very sincerely that the Prophet of our church loves you is just special.  It really captured the sincerity of the Prophets love.  He truly loves us all and cares deeply for us.  It was a great night and both girls responded the same to the question I ask every night.  I ask "What was your favorite part of the day?" they both responded with "Getting to meet that new guy."  It was a great evening and I am so glad my girls were both present and might even be old enough to remember as they grow.  I am forever grateful for Don and his love for the Joy family.  I am grateful for the church and the many good people that are members.  I am also inspired to look at the good in others and ignore the imperfections.  It will be hard, but after seeing what a huge impact it can have....I HAVE to try.  

Sometimes...

I am incredibly good at hiding my emotions.  I have trained myself to be able to keep calm and collected no matter the situation.  I have been forced to accept trials and afterwards have been grateful and so I keep my complaints quiet.  But sometimes....sometimes I just can't handle things.  When the girls are in bed, I break down.  I might call my sister, or overload David with all of my concerns, fears and emotions.  Sometimes I just wish things were different.  The other day for example was one of those days.  As I changed Kadence I thought a few things.  First, Kadence doesn't like us seeing her naked.  There is no way to avoid that.  She is too young to put her brace on herself, let alone put it on correctly.  Once her brace is on she gets privacy but I know how desperately she wants to be a normal 7 year old girl who can close the door and get dressed in privacy.  Second, I hate seeing her completely disfigured body.  When I see her she is beautiful but I am anxiously awaiting the day that she doesn't view herself that way.  I like the imperfections of her body.  The scars remind me how hard she has fought to stay here and how lucky I am to have her.  The thing that pushed me over the edge was another day of sores.  Sometimes, just sometimes I can't handle it.  Here are the pictures from one single day.  In the first you can see a large part of her back is red and was well on its way to a pressure sore, in the middle you see a lighter portion where she constantly gets open wounds, below that you see a darker mark from where a sore still hadn't healed yet.  This, this I could handle.  It's more than usual but not more than we can handle. 

 What got me was when I turned her around.  She had two spots in the front that were starting to get a sore.  Really?  I just feel like this poor girl has had enough sores on her tiny little body. 

I did everything I could to compose myself, but at the end of the day I just had to break down.  I know the whole thing has to hurt.  Kadence doesn't complain, she doesn't even mention it.  We never even notice until we change her.  I just want her to be happy.  I don't want her to hurt.  I wish that I could take it all from her. 

 

 

I don't need sympathy, nor does she.  We are tough and we can handle anything we are dealt with.  I just wanted to stay true to my blog and the honesty I try to keep and let everyone know that even I have my breaking points.  I have to step back, realize we are doing all we can and loving her like she needs and we are all healthy.  I then realize how blessed I am and how lucky we are.  I only break for an evening and then I am ready for the next few months, but I am human and I do have my own little break downs.

It Works!

I have seen so SO many posts about the "it works" body wraps.  I have friends and family members who sell them.  They seem very appealing, as do most weight loss products.  I mean you wrap something around your problem areas and 1 hour later you are inches smaller.  If you decide to wrap additional times, you end up with a thin physique.  Here is an example....

 I know that I am not large, let me just put that out there.  I don't need people to tell me not to lose weight.  I have put on 20 pounds since breaking my knee and then having my thyroid levels off.  I would like to get healthier for my girls as well as for myself.  I see no problem in losing weight.  I do however have a problem with taking short cuts.  I may be lazy, but I feel any results should be worked on and done with adjustments to your lifestyle.  I don't think you need to pay to wrap your body to lose weight, rather work at it and make changes. Here are my "it works" to make lifestyle changes even when you can't do much exercising results....

I didn't get my results after 45 minutes....or even 45 days.  It has taken 5 months.  I am not posting this to brag or to show off and I hope it isn't taken that way.  I am posting because I worked at making positive choices, baby steps, towards becoming a healthier me.  I still can't exercise much, but I take the stairs at work versus the elevator and I do sit ups a few times a week.  Not much, but its more than I used to do. I snack far less than I used to and when I do I don't snack for hours, just A snack.  I used to sit on the couch and seriously go from chips to candy to cereal to ice cream to candy to mozzarella sticks to candy.  Now I get a bowl of chips and a piece of candy.  I don't eat all night long, just one snack after the girls go to bed to help me unwind.  I don't eat healthy, but have began to eat healthier.  I added some veggies, started cooking more and eating out less.  This has been extremely hard because David and I literally don't have much time to cook.  We have made it work and David has also met a weight loss goal in the process.  It has been good for us all.  I am so proud of both of us.  I'm happy we are now setting a better example for our girls.  I'm happy we decided to make a change now before I had gained more than 20 pounds.  I am proud of me and the hard work..... well....."IT WORKS!"