We have some exciting news (if ya haven't already heard)!! We are moving back to Moscow! Rayce was offered a job at the University of Idaho, teaching Virtual Technology and Design (what he got his bachelors degree in). It is an amazing opportunity! We are so sad to leave our family and friends, but SO excited to get up there and have tons of extra time to spend with Rayce!!!
Well, Kenasyn is officially an AMPUTEE!! It is crazy to me to even think this, and it's been 2 and a half months since her surgery. So, let me take a few steps back, and tell you about that.
Kenasyn turned one on May 12th. It was such a special day for me for so many reasons. Number one, she has been through so much!! She had 7 surgeries by this time. She is so amazingly strong! She never let a single one of those surgeries stop her from being a typical baby girl!! One her 1 year old well-child checkup, she met all of her physical and mental milestones that a 1 year old should be at. She talks, stands, crawls, and is just all around adorable!! And number two, is that I got to share her special day with her because it was also Mother's Day!! We had a party for her the night before her birthday, and then another one on her actual birthday with Rayce's side of the family at the annual Mother's Day lunch.
Her birthday was such a joyous occasion for our family! But it also marked the fact that we were less then 10 days away from her amputation. And those 9 days were some of the hardest days of my life. I could hardly spend any time alone because all I could think about was the fact that in such-n-such days, my baby girls leg was gonna get cut off! Let me tell you, there is no way to prep for this! I talked to other mother's who's children had gone through the same thing; and as comforting as these great ladies were, it really didn't help. I cried every day, multiple times a day. I felt so responsible for my daughters condition. I know I didn't directly cause all of her conditions, I feel like my body let her down. Although she will only ever know her body, my heart aches at the fact that she will never know what it is like to be physically "normal". I would cry constantly at the thought that in just a few days, Kenasyn would no longer be whole. That there will forever be a piece of her missing. And still, almost 3 months later, I still think this.
The day before her surgery was literally the hardest day of my life!!!! I just kept touching her feet, and counting her toes, knowing that they would soon be gone. I cried just looking at her little leggy, the leg that we had instantly loved the second we saw it. As unnatural as it was, it was her, and it had defined a part of our lives with her. The hardest part was seeing her PERFECT little foot, with absolutely nothing wrong with it, and thinking that it was just going to be gone. Gone, and never seen again. That some lady was just going to cut my babies leg off was tearing my heart in two!! I took lots of pictures and videos the night before Kenasyn's surgery. I never want to forget how she moved, and the way she sat when that little part of her body was in her way. I had to sing this little piggy to her like 100 times that night, because I knew I was never going to get to do that ever again.
So there was one thing that Rayce and I went into this surgery with confidence about, and that was the fact that we were going to save her leg, and do what's called a Syme's Amputation. That's where the amputation is preformed at the ankle. We wanted to save her knee, in hopes that we could some day get full rotation out of it. But we were hit with a devastating blow from her surgeon. She "advised" us that the best option for Kenasyn was a "Through-knee" disarticulation amputation. Where everything from the below the femur is removed. She didn't think that the knee was functional, and that saving it would cause Kenasyn to have at least another 3-4 surgeries, and that there was no guarantee that the knee could be saved, and that we would possibly have to end up doing the T-K amputation anyway. So we spent the next 3 hours talking and crying over what to do for our beautiful daughter. After weighing all of the pros and cons to the different amputations, we decided that the Through-knee was the best option. We felt like she had already been through so many surgeries, that she didn't need any extra ones. And the fact that we didn't want to have to amputate again years down the road.
So once we made the decision, the process for surgery got started. Kenasyn's IV got started and we went back to the OR holding room. Here's the best part of this whole story (to me, anyways), Rayce got to get into scrubs, and carry our precious little angel back to the operating room. We had spoke to her surgeon about doing a cast of Kenasyn's leg. We had tried multiple times to do this, and none of them turned out very well because she is such a wiggle worm. She said that she would do the casting of Kenasyn's leg after they got her sedated, so that she would be holding perfectly still. So when the time came, Dr H said that she wasn't really sure how to use the supplies that Rayce brought, so she would allow him to go back to the OR and do the casting himself. This is the 1st time in SLC Shriner's history, that a parent was allowed back to the OR. He was back there and helped hold her while they put her to sleep. And then he got to make a silicone mold and cast of her leg. Rayce got to be the last person to hold, caress, and love on that little foot before it was gone. By the time the whole process was over, he got to spend an hour in the OR with her. I am for sure jealous of this time spent with our precious angel, but I am glad that he got to do this. Her dad got to preserve her "perfect-to-us" foot for eternity.
Now while he was in the OR with Kenasyn, I was left to my own demise in her room by myself!! That 1 hour seemed to last 10 hours while I was in there thinking about what they were in there doing to her!! I uncontrollably sobbed the entire time I was by myself. All I could think about was that my daughter was no longer going to be whole. But before I knew it, Rayce was back in the room, and I had someone to hold. And not to long after that, Rayce's Uncle Tim, Aunt Deb, and their son, Carson, came to be with us during the surgery. I never knew how much having someone there to talk to helped! It was so nice to be able to talk to them, and not just think about what was going on in the OR, or when were they going to come give us an update, or when were they going to be done. It was so nice to just visit, and remain calm. After about 3 hours, Dr H came in and told us that she had finished, and that everything went as well as planned. She also told us that she believed our decision to amputate at the knee was the best decision we could have made for Kenasyn. She told us that her quads were not firing properly, therefore she wouldn't have the muscles to straighten her knee out. She also had said that her fibula (the bone on the back side of your calf) was high up by her femur, and would not let the knee function, and that it was the bone that she would have been bearing her weight on, and that as she got bigger, that it would most likely get very painful. She also told me that I would be able to go to the PACU to go back and try and calm Kenasyn down. As I walked back there, I thought that seeing Kenasyn as an amputee for the first time would break my heart. I was preparing myself to cry. But when I walked in there, and the nurse laid Kena in my arms, I was instantly at peace. There was no longer the build up to the amputation, the fact that something was going to be missing, the thought of her no longer being "whole". That was all gone. I held my daughter, and I instantly knew that today was a new day for her. Kenasyn started a new life that day. A better life. A life that she would not be in pain, and she would some day be able to run, jump, twirl, dance, whatever she wanted. A life, that before this day, could not have happened! I have not ever, had one bad feeling about the life we chose for Kenasyn. Not once have I cried at the thought of her being an amputee. Kenasyn is my warrior baby, and she has had to fight harder than any other child should ever have to!!!
Today, Kenasyn got her very first prosthetic. She had a tester socket for a few weeks, but today she got her official one!! I am so excited, as well as she is too! She loves to stand, and show off! She is such a happy baby!!!!!! I LOVE HER SO MUCH!!!
Kenasyn in her Spica Cast. She learned to stand while in this big ol' thing. (this actual cast is quite a bit smaller than the original one she had on. That one went all the way up to her nipple line!!!) It was a whopping 2 pounds, considering Kenasyn was only 11 pounds at the time, that's a lot of extra weight!!!
Lucy (Rayce's niece), Ivory, and Kenasyn. My girls spent the weekend at Lucy's house so that mom and dad could take the older kids to Lagoon!!
Kena finally got her cast off, and you can see how absolutely scrawny she is!!
So if you remember from a few posts back, Kenasyn has a condition called Sacral Agenisis. Basically for Kena, her sacrum is very narrow and flat (should be slightly bowed, this makes up the back of your pelvis). So for Kena, she will always have very arrow hips. She currently measures the same size as a 6 pound newborn.
This picture shows how bad Kenasyn's scoliosis is. The curve in her lower spine is at 35 degrees. Someday soon, they will put her in a cast to start the correction process.
Rayce went into Icelynn's class (Shylee's as well, I just didn't get pictures) to give an art lesson. It was really fun to watch the kids Ooh and Ahh over what Rayce does!
Kenasyn's 1st Birthday Party
This picture was taken at 11:59 pm on May 11th (the day before her 1st birthday). This is the very last time we will have an infant in our family. It is so bitter sweet after all the things she's been through in her first year of life!!
We also had a birthday party on her actual birthday (also Mother's Day) at Rayce's Grandma's house. And his Aunt Cammie made Kenasyn this adorable caterpillar cake for Kena to destroy. It was adorable.
Kenasyn at 1 year old, and her preemie outfit she wore home from the hospital. She's definitely grown, but not very much in 1 whole year!!
(Shylee in a stunt)
(Icelynn in a high stunt)
Ivory and I killing time while waiting for the girls' recital to start.
This is Rayce's nephew Paxton at (not quite) 4 months old, and Kenasyn at 12 months old. Paxton is quite a bit bigger then Kena, at this picture, he was 1 inch longer and 3 pounds heavier!! GROW KENA GROW!!
This picture is the night before Kenasyn's amputation. One last night to squeeze, kiss, touch, count toes. It was really heart wrenching!!
Rayce and Kenasyn right before he walked her back to the operating room.
In the PACU when Kena got out of surgery
Her first cast, a soft cast. Just bandaging and CoFlex for protection
I'm so proud of my Caygee-boy!! He is such a compassionate kid! Not only did he receive the Presidential Fitness Award (the only boy his age!), but Cayge was also awarded the Citizenship Award. The Citizenship Award was given to a few select kids that went above and beyond to help others on a daily basis. They are awarded for their kindness and compassion to their peers and teachers and staff. He is such a good kid, and I couldn't be more proud of him!!!
Just 3 days after surgery, Kenasyn started crawling around, and discovered how to sit on her own. (she could sit before, but her lower leg was in the way, and so someone had to put her in the sitting position)
Kena still wasn't feeling quite herself yet after surgery, and fell asleep on the living room floor. So Ivory went and got herself a blanket and laid down by Kena and sang her songs. It was absolutely precious!!
Kenasyn enjoying her very 1st powdered donut.
So Kena's very 1st "tester" socket! She absolutely loved being able to stand on BOTH legs! I'm not gonna lie, I totally cried! This day seemed like it was never gonna get here, and yet, here we are!
Every summer the kids take swimming lessons at the local Shelley Swimming Pool. Ivory HATED it for the first couple of days! But once she discovered that if she jumped off the side, and the "teacher" would catch her, she loved it!! Every morning she would wake up and say "Lets go to swim lessons!" It was so cute!! (BTW her bummy in this swim suit is so adorable and pinchable!!!)
Kenasyn insisted on standing the entire 45 minutes of the kids' lessons! It was the only day she didn't cry to be in the water!
We went and visited my grandparents one evening, and the kids had a heyday playing on the front yard, and rolling down the hill!
My grandma is one amazing gal!! When my dad was left to raise me and my older sister when I was just a few weeks old, and Genice was not quite 2 years old, my grandma stepped in and helped my dad out. She was my best friend my entire childhood. She taught me how to be the mother I am today. My kids absolutely love going to her house! She spoils them rotten!! I am so blessed that my children know their great-grandma!
Kena's "Leg-guy" (prosthetist) Jim! She normally doesn't like men, but she has always been very friendly with Jim. He is such a nice guy!
Kenasyn got really sick a few weeks ago. The local hospital thought she had Hand Foot Mouth Disease, and Primary Children's thought she had Herpes Simplex (AKA cold sores), but blood work revealed it as an Unknown Virus. She spent 2 days at EIRMC and then was transferred down to Primary's for another 3 days. She had to have a NG tube placed (through her nose to her stomach) because she completely quit eating from all the sores in her mouth.
I had to stop on our way down to SLC to feed Kenasyn. Normally it is just stop and make a fresh bottle and get on our way. This time, however, we had to stop and hook everything up to her NG tube. It takes about 45 minutes to feed like this, because it is all based on gravity. And by this time it was already like 11 pm and I still had another 2 and a half hours to drive, so I rigged up the tube with a pony tale holder and hooked it to the handle bar above the door.
Because we didn't know what virus Kenasyn had, she was confined to her room. The off-white walls get REALLY boring really fast! So once Kena started feeling a little better, we put her in this toy and parked her at her door. She had a great time flashing smiles at passer-by's and jabbering with the nurses. It helped pass the time, anyways!
Flirting with the nurses while they change her bedding after she pooped and puked all over the bed!
Kenasyn finally got to escape the confines of her room the last day while we were waiting for her discharge papers. She wasn't tall enough to see past the little eye balls on the car, so she would hang her head out the side of the car to watch where we were going.
This last weekend, we went camping with some really great friends! We had such a good time! Everyone got to fish tons! And the kids all got plenty dirty!!!
Someone refuses to stay put in her high chair and climbs up on top of the table to eat. The perks of being to small to stay in the buckles of the chair. :/
