Kadence's MRI

I just called Shriners to get the results of Kadence's MRI, and there's some good and bad news. According to the radiologist Kadence has scoliosis. Ha Ha! We already knew that, but he had to note it. She does still have fluid on her spinal cord. I thought it was just in front of her vertebrae, but I guess it was on her spinal cord. She doesn't show any signs of tethering of her cord which is great and she doesn't have split cord. So I guess we got what we wanted. Of course we didn't want anything to be wrong, but we wanted the fluid over the split cord. So all in all we are pleased because she doesn't have both. Of course it starts my mind racing because I have no idea what the treatment plan is for the fluid, if it causes any complications, or if we just plain ol' leave it alone. We don't even see the Dr for a few months to talk about it. Her care coordinator is going to send the MRI results and images over to her Dr to have him review them. If there are any differences in the reviews she will call us back.


While on the phone I also set up Kadence's next casting. It will be on November 11th which means she has another Halloween out of cast!! I explained to the care coordinator that we no longer want Kadence in casts between May and August because she just gets way too overheated. David and I put a lot of thought into what was best for Kadence and felt that it was best. She gets so hot that we can't even go outside until after 7 on most days and this was the most mild beginning to summer we've had in a long time. Plus, Kadence gets a lot of correction out of her first casting and then just stays the same so we figure why put her through the misery. She even had to come out of an air conditioned dance room because she got too overheated. She usually goes backwards while in a brace, but quickly regains ground in her first casting....and then stays there. We don't think we'll get her curve any better than mid 40's realistically, but when she is a woman and fills out you won't hardly be able to notice. We just need to try to keep her down around the 40's so that she is at a safe-ish degree when we fuse rods when she is 13 or 14.

Also, a little update on Kadence's current brace. She ended up getting pressure sores from her brace which means she has to go back in to see if she needs to get remolded for a new brace or if they can just alter her current brace. Most kids keep their brace off completely while letting the pressure sores heal, but Kadence slumps over so quickly that we had to put it on for 4 hours a day. We ended up putting it on while she slept at night so that she would get about 10 hours a day. It's all healed now and she is getting a new sore in a different spot that we are watching. Until it is an open sore we put her brace on the same as usual. We have an appointment to go get it all figured out on August 18th.

That's the update, I'll keep everyone posted on any changes.

5 years?!

David and I will be celebrating 5 years of marriage on the 20th of this month. Unfortunately David has to go to workshops all day on the 20th so we celebrated early. That is the great part about Davids job. We will always be able to celebrate our anniversary together...even if we have to do it 2 weeks early. We haven't stayed at a hotel overnight for an anniversary before. Frankly I never let David book one because I figure it's a waste of money. I feel that we can still enjoy the night together, kid free, at home and avoid wasting the money. This year he told me he wanted to plan the entire date and surprise me and that he wanted to be in a hotel. I didn't want to at first but because it was our 5 year and it seemed really important to him, I told him how much he could spend and let him make the plans. Anyone who knows me well knows that I am an over-planner. I like knowing every detail of what is going to happen and then I start planning for the things that could go wrong. It's horrible, but hey its me. It was so hard to let David plan the whole date and not know any of the details. He did an amazing job! I made him tell me all the plans on the day of the date so that I didn't have an anxiety attack and I was so excited! We were going to stay at Alaskan Inn, and he even thought of me and checked Citydeals.com to save some money. He got the Alaskan Room because based on the pictures it was the least busy of the rooms. I like my bedroom to be plain and simple or else I find it hard to sleep. It was really really nice, and I forgot my camera so I don't have any pictures. He paid extra for some chocolate covered strawberries, and drove up my favorite treats and my favorite kind of caprisuns the night before so they were waiting on the bed and in the fridge. Now for the date: He wanted to take me to see The Other Guys because it has Will Ferrel in it and the very first movie we ever watched together (As a group of friends) was Old School with Will Ferrel. I thought that it was so sweet of him to think that far back and remember that was when he started falling for me. We were very disappointed when we realized that it didn't come out until the next day. So, we went to La Ferrovia to eat because of our favorite places to eat it's by far the most quiet atmosphere. It was of course delicious. Then we rushed my left overs home to the fridge and snuck in a meal to a neighbor who just had surgery. Then it was off to bowling. David likes watching me bowl because I have to walk up to the pins and stand in front of everyone and it makes me so nervous. I hate being in front of people. He loves that he gets to stare at me and I can't do anything about it! I had a lot of fun and since we went on a Thursday it was pretty empty. Then we headed over to watch Dinner for Schmucks. I absolutely loved it! It was a great comedy (my favorite) with a good message. I died laughing and highly recommend it if you like stupid comedies or Steve Correll. After the movie we realized David's brothers, Jeff and Curtis, actually were in the same theatre with us! They enjoyed it just as much as we did. We then had to run to Davids parents and put Kadence's brace on so she could go to bed. After that we were off to Alaskan Inn! When we woke up we had the most delicious breakfast I've had in a while and then packed up to head to the dam. David wanted to have a picnic in a spot we used to go to when we were in High School. (He thought of it all!) Unfortunately it is now fenced off so we just came home to decide what else we could do. I remembered that The Other Guys was now open, so we decided to go see it. It was pretty good. I preferred Dinner for Schmucks, but both were very funny! To end the date we went to Costa Vida. I couldn't have asked for a better date. David put so much thought into it and even though it didn't work out exactly as planned, the thought was there. I loved it and I love him so much! We have been through a lot together and I know there isn't anyone else who could put up with me during it all! Even though I may seem like a tough person that is only my exterior, he has to build me up and make me feel like we can get through anything....often. He is my rock, and my everything. I love you David!

After our fantastic date I was slapped in the face with reality. I had to call Primary Childrens and pre register Kadence for her MRI tomorrow. I hate the MRI's the most! It doesn't make much sense, but I do. They are the simple, low risk, fairly quick, and by far the most least invasive thing she has to go through but I absolutely hate them. They will be checking to see if she still shows signs of split cord, and if she still shows fluid in front of her vertebrae. If she has to have one we're hoping for the fluid....we're praying for nothing, but it's not our choice. The split cord would complicate things in a big way. Most people with split cord are severely physically handicapped which is what has the Dr's stumped. It showed up on her last MRI, but it just doesn't make any sense to them. She hasn't ever made much sense to Dr's, and I'm starting to realize that can be a good thing sometimes. We're hoping for the best, and I'll keep everyone posted.

Wordy Wednesday

Ok, I actually am going to do this on a Wednesday! The word prompt today was Top 5.

Top 5 movies:

1. Billy Madison
2. Bio Dome
3. 50 First Dates
4. Anchorman
5. Cinderella

I love funny movies that are pointless other than making you laugh. I just love the silly stupid humor and always know I can watch them to cheer up on a bad day. Of the Disney movies, I have always liked Cinderella the best. Not so much because of Cinderella, but because of the mice.

Top 5 restaurants:

1. La Ferrovia
2. Chilis
3. Famous Daves
4. Chick-fil-a
5. Costa Vida

Ok, none of these are very expensive but all are so delicious. No matter what we always end up at the same place on date night. In fact, tomorrow we will be celebrating our anniversary (early) at La Ferrovia. If you haven't been there....GO! It's a nice little cozy place with real authentic Italian. I love it and have been going since I was little. My mom knows the owner and its a family regular.

Top 5 treats:

1. Peanut M&M's
2. Haribo Gummy Bears
3. Peachy O's
4. Purple bags of Skittles
5. Pretzel M&M's

Anyone who knows me knows that I have a BIG sweet tooth. I can't get enough candy and actually end up eating it for lunch and breakfast most days. I snack on it all day long and lean more towards fruity than chocolate.

Here were a few of my top 5's, hope you enjoyed!

Kadence's Journey Pt. 4

This will be the happiest of "The Journey" posts, although it was almost the most frustrating point. After Kadence was on oxygen they were able to start using bottles to feed her and would let her drink a little from the bottle and the rest would go into a feeding tube. It was all up hill from there! She continued to make progress daily and was such a trooper. We were able to hold her like she was actually our new baby. I made another goal for her. I wanted her to be able to come home by grandpas birthday. It sounds like things were going perfect right, so where does the frustration come from? Almost right after we were able to hold her I got a fever. If you have a fever you aren't allowed in the NICU. It also meant another trip to U of U's ER. They weren't able to figure out why I had a fever so they just sent me home. My fever kept climbing and it got really scary. I had David and his dad give me a blessing and within an hour my fever started to drop. I was happy about that because it meant I didn't have to return to the ER. I couldn't believe that again I was having to miss out on seeing my baby. She was well loved and had tons of visitors, so I knew she was getting taken care of.

We got news that Kadence was going to be transferred to Logan Regional Hospital because she was just working on learning to breath and eat which they were equipped to handle. We were SO excited!! We would finally be able to sleep in our own beds! The day of the transfer we received a call that she wasn't being transferred. Then we received a call that said she would be transferred, but not to Logan Regional. One of the visitors of another baby had been exposed to the chickenpox which meant Kadence possibly could have been too. She needed to go to isolation and Logan Regional doesn't have isolation rooms in their NICU. So they told us she would be going to McKay Dee. We were ok with that because at least we didn't have to make the drive everyday. Before Kadence left, they did a vision test and also did a chromosome karyotype. The vision test came back that she couldn't see at all. She didn't respond to the test at all. The person who administered the test said that it was very apparent she could see and that her body must have been trying to rewire her connection between her brain and her eyes. He told us not to worry because infant brains are able to rewire bad connections very easily. Not worry?! Ya right! They came to talk to us about her EEG, and told us that she had two lesions in the white matter of her brain. They also told us that it showed she was brain dead at the time. Luckily we had a moving happy little baby in our arms while they told us. This would explain why her brain was needing to do some rewiring. Her chromosome karyotype was done to see if they could see why she got hydrops. It came back totally normal. She was getting better daily and we were wanting her to go faster so we could take her home. They would let her come home on oxygen, but they needed her to be eating well before they could release her. That is what took the longest. David used to sing Eye of the Tiger while he fed her and it cracked me up! The time finally came to do her carseat test. This is a test to see if they can handle being in the car seat. They keep the monitors on and see if it causes their oxygen to drop or their heart rate to increase. For some reason they took off Kadence's oxygen to do the test. We left to get our things packed up and were so excited we would be taking our sweet baby home. When we got back to the hospital they told us we couldn't take her home for two more days....Grandpa's birthday! They said that she did great without oxygen to their surprise and would be going home without it. They have to monitor them for 48 hours to make sure they can handle room air so she would need to stay in the hospital for 2 more days. We felt defeated, we were so excited to finally go home and sleep as a family under the same roof and now we had to wait. We knew it was best in the long run and were excited we didn't have to take home oxygen. She did great without oxygen and on August 5th we were able to take home our sweet 5 pound 9 ounce baby! During Kadence's month long stay in the hospital David and I learned more medical terminology than we thought we ever needed, how much family meant to us, and how much we meant to each other. It helped us to grow fast in a short amount of time and we learned how strong a tiny little baby can be!

Here's David feeding Kadence for the first time at PCMC

Here's how tiny her little hand is compared to mine

She used to just look at us the whole time she was awake

Her car seat test

Sweet little angel