First Swimming Experience

Sydney had her first experience swimming since her amputation. She did great! She tried both prosthetic-on and prosthetic-off swimming. When she was just swimming around she liked not having her leg on, but when she wanted to do the little playgound, she preferred it be on.

 When she had her leg on, we just put a sock on with the foam insert and then her leg - all like normal. It all just got soggy and so when she was just swimming around it got heavy and she said it was also falling off a little and so we took it off when she didn't want to do the playground.

She did great though! It's kind of interesting standing on the sidelines watching though because you can see some people staring. That's something I love about kids though, they either don't notice the staring, or if they do, they don't care! Kids are the best! I could learn a few things from that attitude!

Shriner's Hospital for Children Halloween Party

One of our Halloween festivities was  going to the Shriner's Hospital Halloween party. Sydney had a blast! She especially loved meeting the princesses. For a week straight after that, anytime she had her Rapunzel dress on she would sit on the ground, flair out her skirt and invite her little bother to "come talk to Rapunzel!" in a sweet voice.

 Talking hair with rapunzel

 We ran into our friend Maddie at the party!

 Getting her face painted

 Grandma joined us that day too!

 Little brother got his face painted as well.

 We also stopped to talk with her doctor who was dresses up as Joy from Inside Out.

We love Shriner's Hospital for Children!:)

Her First (and Second) Prosthetic!

Sydney finally got her leg! That was an exciting day! She was so excited about it all and even told me on the way home what color she wanted to paint the toes. The prosthetist was pretty amazed with her as well because she pretty much jumped up and wanted to walk the second he put it on her. Within a few minutes of trying it out, she was walking on her own(a little bit wobbly looking, but she was doing it!)

It didn't take long though before I realized that her foot didn't fit into any of her shoes though and I think she was getting a little frustrated as well because the leg was too long and she kept tripping over it.  I called back in and came in to have it adjusted. We saw a new prosthetist because ours was out of town and I really liked him. Because of a couple reasons combined, we switched prosthetists and I am really happy we did. We have loved James! Below is a picture of her foot before he shaved it down to fit into her shoe. When he did that he also noticed that her Croc shoe she was wearing was giving her blisters and offered to bend it outward for her so it wouldn't give her blisters. He did that and added some blue stuff to it that made it slippery and not as likely to rub and give blisters. I love that he did that! Needless to say, I really liked him and the extra effort he gave!

After shaving down the foot to fit into her shoes, he ordered her a new foot that was smaller so she didn't have to have the funny looking foot ( although it almost looked artistic and modern which was kinda cool but also a little funny). It took about a week for that to come in.
We came in a week later for physical therapy and to have her new foot put on.
The physical therapist thought she was doing really well! That first time we went she spent the entire time helping her to turn her foot inward. She was twisting her foot outward because she was struggling to walk with the new stiff foot and so she would turn her foot outward and walk on the heel. She did really well though and within about 3 days she was walking with her foot forward.

 After physical therapy, we headed downstairs to meet with the prosthetist to get her new foot. James, Our prosthetist had actually noticed at our last appointment that Sydney had been hyperextending her knee so he made a new leg that went up over her knee and helped with her hypertension. I thought that was so awesome! So he did a check socket that day and then he had the leg ready THE NEXT DAY, so we came back in the day after that for the fitting.

 Ignore the tape on the top of her prosthetic in this next picture. I put that on there anytime she wears pants in hopes that it won't rip them a quickly.

 Sydney got a bike for her birthday right after having her surgery, so her first experience with a bike was with her prosthetic leg. She took to it quickly and is now a bike riding pro!:)

 Here is one more picture at her second physical therapy appointment. I think she was a little bummed that she only had to have 2 appointments. She loved physical therapy! It's basically an hour of play time with new toys!

This girl is amazing though you guys! She has overcome all obstacle with a smile on her face! She does so well with her leg. I honestly think she walks better now, especially since she had such a leg length difference before her amputation and now she doesn't have that. We love this little girl!:)

The Cast Finally Came Off! (Caution: graphic pictures of Sydney's stump)

CAUTION! Graphic pictures of her stump are included in this post!

It took about 6-7 weeks from the time she had her surgery before she was able to get her cast off. That was a really exciting day!

I was really expecting that when the cast came off I was probably going to be emotional and possibly cry or at least tear up, but there were no tears or even hint of tears. It was a little surreal, and it definitely looked different because I wasn't used to it, but really, I was surprised at how comfortable Joel and I both were. Probably because, just like with Sydney, we had been preparing for it the whole time too. The biggest thing I remember was how bad it STUNK!lol I was so excited when we finally gave her leg a bath! The stitches looked pretty good too. Dr Carroll said that her stump looked good and that things were healing well.
At first it looked like Dr Carroll had given Sydney a piercing.. turns out it was just a piece of glitter.lol

Sydney took it well too. Because we had shown her lots of pictures and videos of kids/people with stumps and prosthetics I think she was pretty prepared for that moment. The days leading up to her getting her cast off Joel and I kept asking her if she was ready to see her stump, then we'd follow it up with "you're sump is going to be so cute!" It was funny then after she got it off because she kept saying how cute her stump was! 
After seeing Dr. Carroll, we headed over to Prosthetics and Orthotics to get some compression socks. These were to help with swelling and also help protect the healing incision. She freaked out a little when our prosthetist had to put the sock on her, but overall she did really well.

She hasn't really taken to walking on her stump (and still doesn't like to, she just hops everywhere if she doesn't have her prosthetic on), but I got a video of her trying to run while using her walker.

It felt like an eternity before she finally had her first fitting for her leg. They did a mold with cast material. I think the first fitting was about 3-4 weeks after getting her cast off and then she didn't have her leg for another 2-3 weeks after that. During this time it was really hard to go anywhere. Sydney has 2 younger brothers and so it felt like I had 3 babies that couldn't walk during this time. That being said... her are the pictures from her first prosthetic fitting.

The next step was for her prosthetist to do a check socket- which is basically just a clear plastic socket that they make and then look at it and make markings of adjustments that need to be made for the actual leg.This happened about 2-3 weeks after her first cast-mold fitting.

He brought in her little foot for her to check out. She said it was weird because it didn't have big hero 6 on it. She had chosen big hero 6 as her fabric for her leg and I think she was disappointed and confused that it wasn't on her foot.lol

Time in Her Cast

After being home a week, Sydney really turned a corner. I'm not sure if it was just the initial shock of it all was finally over or if it was just all the meds that had given her such intense mood swings, or maybe both, but I was really grateful when that was mostly over!
She was finally her happy, optomistic, independent self again! We went to the gardens here in town and she pretty much ran the entire thing with her walker!

Shortly after her amputation was Shriner's Walk for Love. We had some friends join us, and it was a fabulous day! As you can see by the pictures, we all had such a fun time!

That night, we clebrated Sydney's 4th birthday.

 Sydney did so well with her cast on. In fact, I spent most of my time telling her to slow down. By the time her cast came off, there was a massive soft spot at the bottom of it because she had walked on her cast so much! This girl amazes me!

 We also had a little mini birthday party for her, and having her cast on didn't slow her down a bit, she totally kept up with her little friends.

 Here you can see the duct tape we attached to the bottom, along with a little card board. This was in hopes that the cast wouldn't deteriorate more and the soft spot wouldn't grow any bigger.

She did so well with her cast. She didn't complain almost at all and just adapted to it. Kids are amazing like that. Now, looking back, I am so glad we did her amputation when we did because of the fact of how well she has adapted.

The First Few Days at Home

 These next few pictures sum up how the next 3-4 days went once we got home. Lots of sleeping, not wanting to eat and crying.. It was really nice when she finally started to pull out of that mood.

This was shortly after getting home from the hospital (the poor girl needed a bath). A friend had brought over this sweet little cake and I tried to get her to smile with the cake, and it turned into tears, so we gave up on that one.

About 2 or 3 days after getting home she finally was up for trying out her walker. She was pretty shakey and off balance still though because of meds and all that though.

So like I mentioned, the first week really was pretty rough, but after that things really turned around. We were so lucky to have lots of wonderful friends and family that checked in on us to see how she was doing, brought gifts, and played with her (which was SOOO helpful to me!). We were really blessed by our friends and family during this time and could really feel our Heavenly Father's love through the people around us during this time.

Amputation Surgery Day / Hospital Stay (July 2015)

Surgery day was July 1^st, 2015. The night before I had to call in to get her surgery time. To be honest.. I was probably a little rude to the poor lady on the phone when I found out her surgery wasn’t scheduled until 11am. All I could think was that we were going to have an extremely grouchy 3 year old on our hands because she was going to be starving. She wasn’t allowed to eat from after dinner that night before until after her surgery. I was pleasantly surprised though with her attitude and that not eating didn’t seem to affect her. (I would have been whining so bad! Another awesome thing about kids. They just take things as they are and run with it)

We got up the morning of her surgery and got ready and what not. We had to be at the hospital by 9, so we left our house at 8:25 or so. My mom came in the day before to help out with the other two munchkins so Joel and I could be at the hospital pretty much 24/7.

We got to the hospital a little before 9 and started the check-in process.

Waiting with Merida to be called back.

 After they called us back she got her little hospital bracelets and met a lot of the nurses.

 They then took her weight and height etc..

Then we were brought into her room where we hung out for about an hour while the different doctors, nurses and anesthesiologists came in and met us / explained how things were going to work.

Sydney took right to the place. The hospital's (Shriners) Child Life specialist came in with different movies, a few new toys (like the cute Merida barbie that's sandwiched between large Merida and Sydney) an iPad to play with etc, to help entertain Sydney while the adults talked.

They then had Sydney take some medicine that would make her loopy / help her to not be scared when they took her back. Boy did it work. She also got dressed into her hospital gown.

The toddler hospital gown swallowed Sydney. It was adorable.

Then we followed one of the nurses while they wheeled her off to the surgery side of the hospital.

Sydney was being so funny by this point. The nurses came in to meet Joel and I and to take her off to the actual operating room and right before they did, Sydney said she needed to go potty. They all filed out of the room and we headed to the bathroom quickly. Sydney was sooo loopy and talking slowly etc. When we sat her on the toilet she said "I almost pooped my bed." So good.

A few last pictures before they wheeled her out.

Wheeling her off to the surgery room.

Neither Joel nor I cried that day. I was fully expecting that I would cry. I am a cry-baby after all.. but no tears. It was strange. As Joel and I walked away after taking the picture of them wheeling her into the operating room Joel and I talked about whether or not the doctors/nurses were surprised or thought it was weird that we WEREN'T crying. Everyone we talked to told us to prepare for tears.. But I honestly didn't feel emotional. I'm sure it had a lot to do with 2 things. We had SO many wonderful people praying on our behalf and had so much support from our friends and family. Number two, we were really mentally prepared for this. We felt really ready and felt that we had just made the right decision (later even more so felt this way after hearing the doctor's debriefing). As annoying as it was to have to postpone her surgery because Sydney got sick, I think that even helped us feel that much more prepared as well. We so badly just wanted to get it over with and be on the other side of things. We also were tired of quarantining Sydney and the entire family that when it did happen it was such a relief.
They told us that the surgery would take about 2 1/2 hours and that we would probably be able to see her in about 3-3 1/2 hours, but it took 3 1/2 hours ish and we didn't see her until 4 1/2 ish hours later. Joel and I watched episodes of Parenthood in her hospital room which helped pass the time, but we were totally anxious to see her / hear how it all went by the time our little buzzer buzzed ( think of a dinner waiting list buzzer  thing). About a minute or so later our Doctor came in and gave us the rundown on how it all went.
First off- she started off by saying that she did great. She said Sydney went back smiling and laughing until the watermelon gas knocked her out.
Then she went  on to describe how the actual surgery went. She said that after going inside she really felt like it was the right decision. There were a few things that really made it feel like it was the right choice.

1. There were coalitions between 3 of the bones that we couldn't see from the x-rays because they were just tissue coalitions that would have eventually turned into bone. Meaning that she would have had a big mass of bone in her heel that basically would have made her lose almost all her range of motion in her ankle. For those of you that want specifics, I will get as specific as I can based on my short-hand notes I got while our Doctor was talking. The Talus and Calcaneus were completely  fused.  Then there were coalitions of the Calcaneus and the cuboid, as well as the cuboid and the the Tibia and the Talus. These were basically the main things that made it feel like the right decision, the rest were just cool / interesting facts.

2. They couldn't find her Dorsal Pedis artery. If you look at the folowing picture.. I'm not really sure how her foot got blood... I'm guessing that the artery from her anterier tibia must have just split at the top of the foot? I have no clue.. but the doctor was really surprised by this as well. She said she kept looking for it because she fully expected her to have one. Everyone has one. But that's just another affect of Fibular Hemimelia. Things just don't form like normal.

3. She had extra muscle padding on the underside of her heel. It's normal to have some muscle under your heel, but apparently she had extra muscle, more than normal. This apparently will be really good for her because it will be extra padding for her stump.

4. Also, a random fact. Sydney's doctor sewed her Achilles tendon to her front tendon. Apparently a lot of kids if they have a tight Achilles can have their Achilles pull their heel pad up and then they have to have their surgery done again or just leave it I believe. Our doctor already knew that she had a tight Achilles so she went ahead and attached it to a tendon that is on the front to prevent it from doing that. She also explained that somehow the body creates new veins and such somehow. They basically clamp off the veins and the body just figures out how to grow new ones and circulate the blood. The body is one amazing creation!

It took about another 45ish minutes before they brought her in to us. She had already eaten one popsicle and was getting started on her second. She was really groggy but was in a pretty ok mood overall.

 

As the day went on though her mood went more and more sour. She refused to nap and finally decided to go to sleep at about 10pm that night. She woke up every few hours (usually thrashing) saying her stump was hurting or screaming that there were spiders on it. the next few days at the hospital were pretty rough. She had quite a bit of trouble with phantom pains and muscle spasms. Sydney was really irritable and tired most the time. She didn't get near enough sleep the whole time we were there, which makes any child irritable, much less a child that's just had a major surgery.. Joel and I switched off nights, I took the first night with her and he took the second. We made it down to the cafeteria a few times to eat though which was a great change of scenery. Sydney's mood improved quite a bit each time we were able to get out of the room.

 

 

The night I stayed at the hospital, Sydney woke up at about 5am and was wide awake, so I turned on a movie for her. I fell asleep about 30 minutes later and woke up about 10 minutes after that to her complaining that the "stuff" had gotten all over her.. She had managed to pull out her IV and had NO CLUE that that was blood that was all over her. She kept pointing to the IV stuff and saying that it was spilling stuff all over her.lol I couldn't help but laugh, because I knew that if she knew it was blood she would have been SCREAMING.lol We called in a nurse and got it all cleaned up. Somehow we got lucky and Sydney's doctor authorized her to not have to have a new IV put in. P.s. sorry for the gruesome picture..

On the evening of the second day we went out to the gym to play a little. Sydney got a little too adventurous and unfortunately pulled out her epidural/nerve block. The anesthesiologist came in and said she would be alright without it. Thank heavens because they would have had to take off her cast and such to get a new one in. That night was pretty rough for Sydney though.. and poor daddy that stayed with her too.

 We watched LOTS of movies and Sydney ate lots of snacks/ice chips while we were there.

Luckily Sydney fell asleep on the way home from the hospital. She was due for her meds and we had to wait 30 minutes to get them from the pharmacy that was downtown.

It wasn't the worst experience ever.. but it definitely wasn't fun. She has recovered really well though. Things have only gone up, like WAY up.:) She has her appt to have her cast removed on TUESDAY! I can't believe how quickly the time has flown! I'll  post soon with more detail on how the recovery went. Thanks everyone for all the love and support!!