Surgery Update

After speaking to Kadence's pediatrician we decided to email Kadence's surgeon.  We expressed our need to get a back up plan and asked if he knew another surgeon who could do the same type of rod.  We didn't know if we should really expect a reply because he just got back from him medical leave and I'm sure he is swamped and overwhelmed.  Well after 5 days we decided to start calling our care coordinator, Angie.  (Yes, we have officially turned into "those" parents)  We left a few messages and this afternoon she gave us a call back.  She told me not to panic because nothing was for sure yet.  I then explained that was my exact reason for panicking.  She then said that she is 99% sure that Dr D'Astous would be able to do Kadence's surgeries and that we should have no problem keeping the same dates.  She said that Dr. D'Astous has been doing really well in the clinic and has assisted a little in surgery.  I asked what would happen if he couldn't do her surgeries.  She explained another surgeon would take over.  She said that Dr D'Astous has trained him how to do the same surgeries.  She said it would be more likely that both surgeons would be in the operating room if D'Astous wasn't up to doing the full surgery by himself. YAY YAY YAY!!!!  We now have a plan AND a back up plan!  I can't express how overwhelmingly comforting that is for David and I!  We seriously are so relieved.  We don't have to travel out of state, we can stick with our surgeon (or another that he trusts), we can stay at Ronald McDonalds, we can be close to family, Kadence doesn't have to wait much longer to get done what she needs so desperately......the list just goes on and on.  I am truly grateful and feeling so blessed right now.  I am bursting with happiness at this point!  So despite freaking out for 2 weeks, everything is great!  I can now sleep at night knowing that things will work out.  

We also met with the dietitian this morning.  We were hoping she would tell us more than just "put butter on everything" like all the others have in the past. She had some really really good advice for getting Kadence the fats and calories she needs.  She taught us how to pack tons of calories into her meals, how to give her high fat food for breakfast and right before bed, etc.  She told us that most kids eat around 1600 calories a day and we should aim for 3,000-3,300.  She said not to worry or stress if we aren't because she will eat when she wants and we have absolutely no control over that.  We can't make eating a chore or a negative experience. We have a lot of new things to try out and I'm hoping we'll see some major results pretty quickly.  Here is round one of shopping and this is all for Kadence...

 I realized right when I got home that I forgot a ton of stuff so we'll be going back to the store after dinner.  We will be doing a lot of smoothies that have greek yogurt, half and half, ice cream and berries.  We'll make pudding with cream instead of milk, cream cheese on toast/bagels, dehydrated fruits and lots of eggs!  We'll then also be bulking up the regular day to day meals as well.  We had to buy everything above in reduced fat/low fat as well so that Shelby can enjoy smoothies too! (Low fat yogurt, 1%milk, reduced fat ice cream, fat free pudding, etc)  All in all we had a very informative and great day! 

Surgery Update

We again are ready to spill some news that has been weighing on us for the last few days.  We choose to keep things to ourselves until we feel we are emotionally strong enough to talk openly about things and take opinions from those around us.  :)


The other day we called and talked to our care coordinator, Angie, to ask her a few questions about the surgeries and to make sure we were all on the same page.  We also needed to get some documentation for the school.  Everything went well.  We were a little bummed because they only have 3 private rooms so there's a chance that Kadence may have to share a room for some part of her stay at the hospital.  I personally don't feel a kid should ever have to share a hospital room.  It's so hard to be comfortable but then to have to share your space, handle the other child's many noises and try to be quiet and considerate is just asking too much.  I guess they "try" to get the halo traction kids their own room but there's no guarantee. The second part that was frustrating is that only Kadence gets free meals.  Now that may sound extra greedy I'm sure but it is still frustrating no matter how greedy it sounds.  Shriners requires an adult to stay with the child at all times (and we would without that requirement) but then they require you to purchase food from the cafeteria if you want to eat.  Kadence has stayed in the hospital for 10+ days twice and they always allow Kadence to order food as well as one adult.  If anyone else wants to order food they have to go to the cafeteria and pay.  This just complicates what we had planned because we will have to have the extra money we weren't counting on.  Neither of these two things are too difficult though, just minor bumps to our plan that I'm happy we sorted out in advance.

Later that day we got a call from Shriners.  I thought it was weird considering we had just talked to Angie.  It ended up being someone who asked if we had been given our surgery dates.  I assured her that we did and we knew it would be April 10th and May 1st.  She then said, "Ya...theres a slight problem with those dates."  Really?!  Kadence is looking forward to those dates.  She knows how many days she has left until surgery.  She knows we will be home from Boston for 2 days and then go to Salt Lake.  She knows that this is her final brace she'll ever wear.  To change that will really throw her off emotionally.  We finally got her to where she is doing pretty well with it all.  The lady on the phone told me that she would need to change the May 1st date.  She then went on to explain that Dr D'Astous has been out on medical leave since we scheduled our surgeries and would be returning to work on the 18th of the month.  She said that he is going to only be doing clinic appointments for a while and then will see if he's ready for surgeries.  Depending on how things go he may not do surgeries anymore, just clinic visits.  (I started crying at this point....quietly of course) She then said that I could try to see another surgeon and I told her that we trust Dr. D'Astous.  We have been dealing with him for about 5 1/2 to 6 years.  We trust him a great deal and we know he will take great care of Kadence.  This is devastating news for us.  We don't want anyone else to operate on our baby.  Not to mention that he is the only one who has gone and observed the drs in France who adapted the new form of rod that he was going to put in for Kadence.  Dr D'Astous mentioned that with how incredibly thin Kadence is that the more common growing rods could pose major complications.  That is why we decided to go with the other form.  The lady said we would keep the April 10th day for surgery and then we would need to move the May 1st date to May 5th.  Ok, the extra few days might not seem like a lot to someone who hasn't ever stayed in a hospital with a child before, but the extra days pushed me over the edge.  That is 4 more days in Halo, 4 more days in a room, 4 more days of food to pay for, 4 more days to pay for Ronald McDonald house, more time without work, no more hope of being home for Mothers Day, etc. (There was a tiny glimmer of hope for her being home by the 11th) All in all I was beside myself and David was gone.  He walked through at the end of the call and as I hung up I just lost it.  I of course had to keep composed while talking to someone who has no control over the situation but then immediately melted into an emotional wreck.  Since then I have gotten to where I can talk about it without freaking out completely, but I am still upset.  We both are.  We haven't told Kadence yet and don't know when we will.  We have a lot of decisions to make and we need to make them quickly.  Kadence's body is not doing well with the braces any longer.  This is about 3 sores all at different phases of healing.  They try to put extra padding in, different padding, push on different areas but nothing is working.  She has no other option besides surgery.  We can't do without the brace because she will progress to the point of crushing her internal organs.  Not to mention she already has pretty low lung function as it is.

We can't avoid surgery, it is our only option.  The decision now becomes what do we do, where do we do it and who will we have do it?  We will know about mid March if Dr D'Astous is going to do surgeries.  Then we aren't sure if he will do longer surgeries like the rod or just castings and halo surgeries.  We also have to decide if we still want D'Astous to do the surgery.  We are worried that whatever has happened might limit his ability to do as great of a job as before.  Although we do trust that he won't operate on a child unless he is fully confident in his ability.  We have told Kadence since November that she will only have one more brace.  If we find out mid March that someone else will need to do the surgery we will then have to start in the clinic and then reschedule her surgeries.  This will mean we need another brace in the meantime because her surgery was right around when she'd need to be fitted with another brace.  I don't want to mess with Kadence mentally by changing concrete things she has known about.  Because of this David and I are trying to find a plan B in case plan A doesn't work out.  We would like to get in to talk with another dr and see what they say as well as schedule the surgery dates.  Then if D'Astous can do the surgeries we will cancel Plan B.  I also have been contemplating the benefits of Primary Childrens over Shriners.  We love Shriners but I have wondered if it might be better to do the surgeries at Primarys instead and have her stay there. There are just a lot of things weighing on our mind and we are hoping to figure it all out quickly.  I seriously haven't slept in days and have been so completely exhausted.  I have spent my time doing research and when I'm not researching I'm debating all my options in my head.  I can't turn it off.  We love Kadence and want to make the absolute best decision for her. We will continue to keep our friends and family updated as we go along and as we make different decisions.  As you can imagine this is a very difficult thing for us.  We really appreciate all the love and support we have received from you all, it means so much to us.  Thank you!

Brag Fest

I am always proud of my kids, but sometimes I am just so proud I have to brag about how amazing they are.  We went to Parent Teacher Conferences tonight.  While we waited we saw Kadence as George Washington. During first grade it was always obvious that she was a little behind in the work put in the hall as far as neatness and penmanship were concerned.  Not this time!  I was proud before we even got to the teacher.

 The PTC was mostly student led and the teacher added input and circled some things.  Kadence can read 109 words per minute with 100% accuracy. (Goal is 72 for the class) Kadence made a goal to improve by 11 words per minute by the end of the year.  Kadence also scored VERY well in the SRI testing. She scored 754 which puts her as advanced. (She was proficient at the beginning of the year)

I googled the score to see what it meant and she basically tested "proficient" for fifth grade. Wowza!

 Last PTC we found out that Kadence was REALLY struggling with math.  We worked with her and she did great!  Kadence went from completing 21 subtraction facts in 5 minutes to 44.  That is a great improvement but her addition facts went from 28 at the beginning of the year to 98!  I love how she doesn't get discouraged and just keeps working hard.  

There's room for improvement still of course.  She will be working on subtraction.  She more than doubled her score from the beginning of the year, but the goal was 80 so she still has a lot of work to do.  Below also shows that she hasn't quite mastered even half of her subtraction facts yet.  We'll get there!

 Kadence read 109 words per minute versus the goal of 72.  She read with 100% accuracy versus the goal of 96% and her retell knowledge scored a 28 versus the goal of 21.  

 The part that made me the most proud wasn't that she excels at reading or took on a challenge to drastically improve her math skills.  It was that her teacher thinks she is on task, respectful, responds immediately, etc.  Then as we were walking out of the class Mrs Wright said, "I wish I had a class full of Kadence's" which made us so proud.  

Then it was on to Shelby who was having "the best day ever!"  Who wouldn't be?  She got to be the line leader, they had a school wide Valentines tea party where they all dressed up, her class had their Valentine party AND she got to take home the class pet Ted.  

Shelby had some art work in the hall too along with about 15 other Kindergarteners.  

Shelby led the PTC as well and even introduced Mrs Cook to us.  "Mrs. Cook, Here is my mom and dad but I call them mom and dad their names are David and Leanne."  It was so funny.

Shelby did GREAT on her dibels test and is well beyond the goals set.

 She improved from 50 at the beginning of the year to 255 which is an incredible jump!

 Shelby knows all her letters and their sounds, all numbers to 21 except "12" and can write them all.  She knows all 35 Kindergarten sight words and 25/77 of the first grade sight words.  She then pointed to the ones she missed and said "I know that's HER, that's OUT...."  Mrs Cook laughed and said "Well, obviously this isn't an accurate score."  Shelby showed us a few books she made and illustrated.  One was about how some families are nice and others are mean but it only matters that you are nice.  I then explained that she is learning that not all homes are nice and not all parents are nice as I train to work with abused and neglected children as a CASA volunteer.  I also put out a warning that she may mention her mommy has to go to court and that isn't for me, but for the children I will be helping.  Ha!

Shelby too has ways to improve and goals she set for herself.  She will be working on adding more details to her pictures and learning all the first grade sight words.

 We again were beyond proud to hear that Shelby is a good worker, a sweet girl and a friend to everyone.  Mrs Cook teared up when she told us about an activity they do regularly.  They pick a friend to work with and Mrs. Cook tries to pay attention to children that aren't picked first very often.  She paired Shelby up with one of the little boys not often picked.  She got "weepy" as she explained to us how much the little boy thrived and that to him, that moment, he felt like he was on top of the world.  She said that Shelby just brought out the best in him and she is continually amazed with her thoughtfulness of others.  

David and I always buy the girls a book from the book fair as a reward for a good PTC.  This time we didn't feel that was quite enough especially since the girls were dressed up with nowhere to go.  We decided to take them to Firehouse Pizzeria to celebrate them being smart, kind and respectful.

 I love these crazy kids and am SO proud they are becoming kind little people.  I tell them all the time that I will never be disappointed in them unless they are unkind to someone.  Being kind is my number one priority.  I of course have other goals in mind, but to me I will feel like I raised great kids if I raise kind, thoughtful and giving girls.  So far so good and I can only pray it lasts.

Tender Moments

I absolutely love my girls to death and feel like I am truly the luckiest momma there is.  I have started taking pictures of a few of the tender moments that I don't want to forget.  There tend to be more from Shelby but that is because she is home in the morning while Kadence is at school and does a lot of drawing and note writing.  

Here's a note Shelby left on my bed "Mommy I love you a lot what wood I do whith out you?"

(Mommy I love you a lot. What would I do without you?)

 "Mom you cant sae a nubr hoo much I love you"

(Mom you can't say a number how much I love you)

"The day that I mad this I was 5 from Shelby Joy"

(self explanatory *made)

 Here is a little of Kadence's work that was hung in the hall.  It's a part of the Leader in Me program their school does.  When asked what she wanted to achieve today, she wrote "I want to not wery about my sergery." Then it asks how she will achieve it and she wrote "colm down sing a song the docters and nurses are nice."

 Kadence was also recognized by the school as being a leader.  "Kadence begins with the end in mind when she gets to school on time each morning." She was so beyond proud of herself! I don't know which was better, that she was recognized or that she was so proud of herself. 

 Not a kid thing, but I have a pretty great husband who leaves me notes and my favorite candies (Of which there are many to choose from) Love him too!

 I love that my girls enjoy helping me make treats

 This is Shelby on her birthday.  She just wanted to color so we let her color on some wrapping paper.

 Here's what she did..."To day is my birthday Hra!" (Hooray)

 Shelby gives at least one note/picture away each day.  "Thank you for a grate birthday Mom and Dad!"

 I love to just watch as my girls play together.  This was a day when I didn't brush their hair a single time all day, they just had a lazy day and enjoyed playing in this box until it tore to shreds.  (Then we rode down the stairs on the cardboard, but that was more dangerous than tender) These girls love each other so much and are genuinely best friends.  I hope they stay that way forever!

Reflection Contest Update

Kadence and Shelby received a letter in the mail inviting them to an award presentation for the Reflection Contest they entered.  Kadence entered into the photography category and Shelby into the Visual Arts category. We went to Buffalo Wild Wings to celebrate their accomplishment.  We knew both girls did their very best and did their own work and we thought that was cause enough for celebration.  We then went over to Logan High for the presentation. Here we are waiting for it to start...

 Before it started we could tell by the program that both girls were "council winners" which means they won at the school level and then at the council level which is basically their school district.

Kadence getting her award...

 Shelby getting her award...

 We were surprised to see they both won first place in the council division. Shelby was so proud of herself until she noticed that Kadence got first place too.  She didn't realize that they both entered different categories so she was a little disappointed thinking they gave everyone a first place.  After I explained it to her she was very happy again.  Kadence got a $10 gift card to Hobby Lobby and Shelby got a $10 gift card to Walmart.  Both girls have moved on to the Regional division which is basically all of Cache County.  We are excited to see how they do there.  

Super Bowl

We had a pretty uneventful Super Bowl this year.  We were going to be celebrating a baby blessing (Kael) and Shelbys birthday with family but due to almost the entire extended family having medical problems/illnesses both were cancelled.  We had however planned to do something small at home for the Super Bowl anyways.  We had purchased chips and that nasty orange gooey cheese so we could make nachos.  We bought Davids traditional Whoppers and Milk Duds and we also added Sour Patch Kids because it is a new favorite of my girls.  While we were buying our treats Shelby said "What if for Super Bowl we made bowls that were round or square and decorated them so that they would be Super Bowls?"  She thought she was SO funny.  My girls know that it's about football.  They had chosen the Broncos as their team, but she just is a silly kid.  We started our day putting together a puzzle Shelby got as a birthday present.  It was a lot of fun and we all look forward to more puzzles in the future.

 I wanted nachos that were more filling so we threw some chicken seasoned with taco seasoning, black beans and REAL cheese on chips and threw them in the oven.  They were so good!

 Kadence was our main entertainment during the game.  She kept trying new poses.

 We tied ribbons on to our treat bowls so that we could have "super" bowls.

 Shelby of course has to imitate her sister.

It was a horrible game to watch because it wasn't even a close game.  We were just rooting for the Broncos to at least score.  I prefer to have a super tight game because I like the intense back and forth.  There wasn't any hope for the Broncos right from the beginning and somehow it just kept getting worse.  We did enjoy watching the game as a family and I love that I get to share this time with my kids.  I remember watching the Super Bowl with my mom when I was really little.  She would make caramel popcorn and give us cups of Alpha-Bit cereal. (That was HER cereal that she never shared) We always cheered for the 49ers of course.  :)

Shelby's Tea Party!

Shelby decided she wanted a tea party this year for her birthday.  I tried VERY hard to influence her to have a mad hatter tea party, but she chose to have a "fancy tea party where everyone dresses up."  As always it's what the birthday girl wants that matters so fancy it was!  I set up for the party the night before because I knew that I would be busy making treats the day of the party.  Shelby kept coming in to check the progress and was SO excited and grateful for every little detail.  I think I heard "thank you mommy" about a hundred times. I ended up starting the cupcakes at about 11am on the day of the party.  Mind you, the party started at 2 and I still had to let them cool, make frosting, frost them, dip strawberries and make oreo balls.  Oops!  I was in a bit of a rush.  I'm so glad that David is always so good to help me.  I was freaked that the sink would be full of nasty dishes when our guests arrived.  Plus without him, we wouldn't have had our traditional McDonalds lunch.

 Each girl got a tea cup full of goodies and also got to choose a tea party book.  Shelby loves to read so I thought this would be fun for her.

Shelby and her balloons!

 Love these two!

Our traditional family picture

 Shelby only invited two girls from Logan, Chloe and Naomi.  The other guests were coming from Ogden or Morgan.  Because of snow they were running a little bit late.  (Not to mention our house is difficult to find)  The four girls decided to play duck duck goose and had a lot of fun!

 We had a pinata that had pull strings because hitting with a bat didn't seem "fancy".  I was nervous that if we took turns then the first girl would open the pinata so they all picked a string and pulled together.  Well, the last string that nobody had picked was actually the one that opened up the pinata.

 Finally!

 We filled the pinata with jewelry and tootsie rolls.  (Shelbys favorite)

 Shelby had her birthday party on her friend Emi's actual birthday so we sang to Emi

 Then we sang to Shelby

 Naomi and Shelby

 Addilyn and Kenzley

 Chloe and Kadence

 Sarah and Emi

 We opened presents and Shelby was spoiled rotten

 After presents we just let the girls dance, sing and play.  I didn't really think about having an activity until the day before the party.  I am a little rusty with my party planning I guess.  When I told Shelby she told me that she thought it would be a good idea to just dance after.  I pulled out her karaoke machine, her new Frozen CD and let the girls have at it.  We did offer any adult their choice of ibuprofen or tylenol because.....it was kind of loud.  David captured Shelby singing her heart out without help of a microphone....

 He also got a picture of Shelby and Jeffy dancing.  Notice that Jeffy even dressed up per Shelby's request.

 Jeffy bought Shelby a shrinky dink machine and she LOVES it.  She made a cupcake keychain.

Shelby let her sister try it out and Kadence made a flower necklace.

Shelby had a lot of fun and I'm so glad that almost all of her friends were able to make it.  I'm also very thankful their parents were willing to make the long drive for Shelby.  I mean, they were in the car longer than they were at the party.  I love letting the girls pick their party theme and help me in the planning.  I love even more how grateful they are about all of it.  When I tucked Shelby in bed she said, "Mom I can't believe I'm 6!"  I am right there with her, I can't believe she's 6!