Femural Rotations, New Setbacks, Learning Grace

They say be careful what you wish for. I used to compliment how well some of my friends handle challenging or painful situations. I’m learning my grace through my daughter with her incredible recovery. We’ve had a second week of not-so-great news. While her surgeries were a success with rotating her legs into proper alignment, her feet are now causing issues. I’ll have a video posted on my Facebook page (seriously thinking of getting all of this on YouTube) but I took pictures for you to see.

When she walks, they angle in excessively. It’s so severe that it’s causing misalignment in her knees, hips and back. We are waiting to see if she can get lifts in her shoes or if it’s another skeletal issue. I’m hoping it’s a muscle issue and with strengthening, can re-align properly. Of course if this goes on too long, it can also cause damage to her knees, hips and spine. So we are going to address this next week.

On a good note, she’s been swimming with me and her younger sister three days a week in addition to her physical therapy. It’s allowing her to use and strengthen those new muscles without the pain of her body weight on her leg breaks. She’s absolutely thrilled to be active for HOURS without the excessive pain. The memebership at the Recreation Center in our town has honestly been a blessings and side win is it’s helping me get back in shape too! Win/win!

She’s camping out in our front yard with her friend and sister tonight. She missed Mountain Man Rendezvous this year so they are creating a little one for her tonight. God bless wonderful souls that have the hearts of mountains.

I hope you have a blessed weekend and thanks for listening!

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Femoral Rotations and New Information

This week has been a challenge. Madison is starting to learn balance and walk without her crutches. This is the first time watching her walk since her surgeries back in May and we’ve been a little concerned. Her waddle is that of an old lady or something that is not of this world. At first it’s a bit comical but as I was trying to help her figure out how to walk “normal”, we realized that her right hip is considerably higher than the other. Of course this involved an email into her surgeon to find out if this is normal.

We had to wait until Monday to find the answer and all of the information was rather interesting, to say the least. And the following information is for femoral twists only. I’ve heard the TYPE of surgeries she had are for MANY different problems/complications but what I’m going to go into now is related only to the femoral twists that these kiddos are born with.

So because her thigh bones were twisted, her hip flexors rotated her legs when she walked. This is how she learned how to walk, run, jump and play; her body not knowing that this wasn’t normal. Now that she’s had her legs corrected, her hip flexors are having to re-learn how to move and engage which is causing her waddle. She literally doesn’t know how to walk, ie. swing her hips, which is how we all normally walk.

This completely changes the dynamics of her entire body. If affects her lower legs, obviously her thighs and hips, her lower back, her shoulders. Yep, her entire body. Most of the time she’s pretty light-hearted about all of this and she’s a pretty amazing kid but we still have our breakdown moments when she’s tired, or hurting, or even tired of not being able to walk the way she used to. What’s also very interesting is that the breaks in her thighs are just now starting to cause her pain and discomfort. I had thought we were done with the wheelchair but we will be taking it with us on our out-of-town trip that’s coming up.

My biggest advice at this time is patience and listen to your kiddo. Their fears, frustrations, worry and pain are with them 24/7 which is so easy to forget when we climb into bed. We aren’t living with it so we don’t know it as intimately as our kiddos do. Sometimes I just pull her aside when no one else is around and I let her vent. She can swear, cry, yell, laugh, anything she wants to because this human of mine is dealing with a LOT. This world has a lot of sharp edges in it, I want to be the safe place for her to land every time.

I have quite a few videos of how she moves and walks if you would like to see over on my Facebook page. Unfortunately I can’t upload any videos here or I would. My Facebook page is https://www.facebook.com/raeanne.hadley. Have a great weekend and keep up the amazing love and strength!

Femoral rotations and Post-Op Week Results

Yikes, I missed last week and I sincerely apologize. It’s been a tough week and I’m not going to sugar-coat it. Our trip to Children’s Hospital went anyway but smooth and the results weren’t what we had hoped or even anticipated. I’ve also been sick with the stomach flu and/or stress this past week so yeah, everything BUT Madison went on the back burner.

Our trip down was insane. The reservations we had at Extended Stay America got messed up, the guest clerk couldn’t care less that we didn’t have a place to stay and turned us back out onto the street. Despite all of that we went to the hospital sure that her post-op would be amazing. How wrong we were.

The doctor wasn’t there, which we knew before coming down. We were to see the PA. She had new x-rays taken of Madison’s legs. She wanted Madison to be off of her crutches by the time school starts in 5 weeks and wanted her walking better. This was all disappointing news because we thought she was doing great, including her physical therapist. Granted this was the first time we had ever me the PA, so I’m not sure if she is just gruff normally but she wasn’t encouraging at all and kind of crushed Madison’s pride. Madison thought she was doing great, as we all had.

Then the news from her x-rays. She has very aggressive bone growth around the breaks in her femurs. Some of the bone is lumpy and you can feel it on the outside of her thigh. If you look closely in the x-rays, you can see where it starts quite a few inches above the break, curves out (thickens) and then goes back down. Some is to be expected because her legs are healing but hers is “aggressive” and can cause problems if it continues. So we have to have more x-rays done in 6 weeks. At this point we don’t know if the severe pain she’s experiencing while walking and on her feet is just normal, bone-healing pain or if it’s the extra bone. Time will tell.

And on a last bummer note, while her feet are finally facing forward, she is walking towards the inside which is twisting her ankles. Her physical therapist is placing a call into her doctor to see if we can get orthotics to build up the inside of the bottom of her foot. If left as is, it can cause deterioration of her knees, hips and back.

On a good note, she was so determined after the comments from the PA that she ditched the wheelchair the day we got back home. She is only using crutches and trying so hard to walk without them even but she still has no balance. I see my daughter fighting so hard to get back to normal and I refuse to tell her she’s not doing enough. She’s a fighter and I won’t dampen that beautiful spirit of hers.

Until next week, I hope you take every day as a blessing and if you have any questions, please feel free to reach out. I’ll help anyway I can, as I’m learning as I go! Peace, blessings and here’s to healing legs!

Femoral Rotation Surgeries POST-OP WEEK!!

POST-OP WEEK!

We are leaving Friday to head back to Children’s Hospital! It will be the first time her surgeons have seen her since her surgeries. She has been working so very hard and I know she is going to blow them away with her progress.

As her mom, I’m a little nervous about the trip. As you remember from my first post, we had NO idea how to get her to the restroom and her comfort for the five-six-hour drive. Granted, she is so much farther along and we have the belt that the Gunnison ER nurse gave us but still a little nervous.

It’s going to be a quick trip. We are driving down the morning of her appointment, staying the night and then heading back home the very next day. No playing around on this one, though I had hoped we could have visited the zoo or something. Maybe next time.

This post is going to be a little all over the place as the few things I’m going to bring up won’t take up a full post, so I’m going to combine them. The first thing I’m going to “suggest” is that if you do find out that your child has to go through this type of surgery, you might want to consider keeping that information close to your chest. I’ve always been the type of person to wear my heart on my sleeve. I will try and give you the shirt off of my back if I think it will help you more than it will help me and for some silly reason, I think everyone I come in contact with thinks the same way. Yes, a little naïve but there it is. So when we found out about Madison and what it all entailed, I reached out to everyone. I needed help and was hoping that I would get back what I had put out there. I needed help both emotionally and physically. We had a 37-acre horse boarding ranch we were having to shut down just as we were building it up. I loved each of my boarders, spent the past two years caring for their horses, getting our name out there and now we were closing our doors. Not only were we losing almost two-hundred thousand dollars we had invested and spent on the ranch but I was losing my dream. Something I had wanted my entire life. I was dealing with a lot of guilt. Letting my boarders down, moving my family again, losing that monthly income, feeling like a failure. It’s a lot to take on alone.

Thankfully I had a week’s worth of vacation saved up from my outside employer so I took the entire week off so that we could move our household. Our landlords at the ranch had asked us to get out as soon as possible so that they could list the ranch again (we had been in a lease/purchase agreement with them but obviously couldn’t purchase the ranch with everything going on) and I wanted to honor their wishes. It would also give me a chance to unpack before going back to work and getting into a new routine.

Unfortunately, the morning I came back to work, they pulled me in the office and let me go. One week before my 1-year anniversary. I was told I wasn’t being fired, that things weren’t working out at that particular time and that “down the road, I should feel free to re-apply”. Since I’m not an idiot, I put two and two together and knew it was because of the time I was going to miss for Madison’s surgeries.

So in a matter of four weeks, we closed our business, I lost my job which included our health insurance, and moved to a rental house south of town. To add injury to insult, our landlords only gave us half of our deposit back stating that we hadn’t left the ranch in the condition we received it, which is an absolute lie. I was thankful that I had video recorded the property and the house and had proof that it was actually in better condition than when we moved in and was prepared to take them to court. But a very dear friend of mine sat me down at lunch and made some excellent points. Yes, we would win in court if I pursued that route BUT there was no guarantee that I would ever get our money back. I would have to pay the court fees to take them to court and attorney fees. Just because we got a win doesn’t mean that they would pay, so then there would be collection fees to go after them that way. I would be throwing good money after bad. Then I am still dealing with preparing for Madison’s upcoming surgeries, getting the house organized and ready for her disabilities and running her back and forth to physical therapy. There was so much on our plate that we decided to let it go.

Looking back on all of it now, we are grateful that everything happened the way it did. There was no way I could have closed the ranch down, settled our horses in their new place, got the house unpacked and prepped and had Madison to all of her physical therapy appointments had I still been

working for my outside employer and had taken our ex-landlords to court. I don’t think I could have handled Madison’s surgeries emotionally if I had invested in those other things either. Keeping it together during the hours we waited anxiously in the hospital took everything I had and let’s face it; my daughter is SO much more important than those other things. Those other things made me stronger, humbler and more grateful for the true blessings I have in my life.

I’m hoping that you don’t have people who try and take advantage of you during this difficult time. I hope your friends and family rally behind you and lift you up instead of tearing you down. I had an amazing network of friends and family who supported me and my beautiful family. I’m forever grateful to them and believe me, I plan on showing them as things settle into our new routine. For now, I’m focusing on this incredible child and the milestones she is leaping over. Blessings to you and keep on staying strong!!

Femoral Leg Rotations & Parents part 4

HAPPY FOURTH OF JULY!

Yes, we celebrate our independence and our beautiful red, white and blue flags here! We are hoping you are enjoying this holiday too and staying safe. Madison was able to stand long enough on her crutches to go visit her horse, who came running up to see her. It was a beautiful sight!

It’s been a tough week here at the Hadley household. While Madison has been doing great, she isn’t healed enough to go to her rendezvous camp-out in two weeks. Her father and I figured she wouldn’t be able to but she still had the goal in her heart and we didn’t want to crush it. We head for Children’s Hospital next week for her six-week post op. New X-rays and examination to see what’s going on.

We do know at this point that as her swelling goes down, one of the screws in her hip/femur is starting to catch on the muscle and tendons, making it difficult to do certain physical therapy activities. At this stage, we don’t know if they will have to remove it, put a smaller one in or leave it until the hardware comes out at nine months. Lots of questions for next Friday. I will let you know after next week, definitely.

What I wanted to talk to you about today is expectations and other people’s perceptions. For the most part, people in public are great and very kind but prepare yourself, physically and emotionally, for the jerks. We’ve had a little old woman glare at us and give us the stink eye when I didn’t get the handicapped tag up fast enough in my rearview mirror of my car. I’ve had more than one person run their shopping cart into my daughter’s wheelchair at the grocery store and not even bat an eye or apologize. I’ve had people who have sped their vehicles up to make it through the crosswalk so that they didn’t have to wait for her to cross and others back out of parking spaces without even looking for shorter objects.

I’m not bringing this up to point out that there are douchebags in the world, we all know that there are. I’m bringing this to your attention so that you can protect your child. When you walk, walk so that your body is protecting the wheelchair and child. Driver’s usually aren’t looking down when they are backing up or driving. They are looking for other cars, other upright pedestrians and open parking spaces. If you are there, they will see you first, the wheelchair second.

In the grocery store people are less likely to run their carts into your child if you are standing right there. Some people don’t mean to hit the chair but others just don’t care. You need to be there to try and prevent it because jarring hits like that can be very painful, especially if it’s right after their surgeries.

I also want you to prepare emotionally. It won’t do anyone any good if you are in jail for assault (let’s face it, we are all protective mommas and daddies when it comes to our kiddos) So you need to learn to be able to walk away without causing any bodily damage to someone else. Dealing with douchebags will have to wait for another time and remember, for every douchebag that’s out there, there are ten more souls who are willing to do anything to help you and your child. Recognize, focus and be thankful for those positive people. They are out there and they exist, it’s OKAY to lean on them. We are all here for each other.

Now go grill something, have some fun with your family and watch those beautiful fireworks!

Femoral Leg Rotations and Parent’s cont.

PART THREE

I know it’s Thursday, almost towards the end of the week but I warned you in the beginning that sometimes my blog might be once a week or several times a week. It might just be this one.

This week has been wonderful, she’s doing leaps and bounds in therapy but we are having to get our things together and prepare for our 6-week post op trip back to Children’s Hospital. In the mix of all of that, I have a novel due next month, throwing my hat into the ring as a first-time publisher and working with some amazing authors from all over the world. I’ve been a little busy.

One of the things I forgot to tell you to bring for the hospital is clothing. We thought of only buying super soft shorts because we figured she wouldn’t want to have anything on her legs but nobody told us that the swelling in her hips and thighs would be so massive that her sizes wouldn’t fit. She’s normally a size 9 womens but she could only fit into my size 18 shorts. Yes, the swelling will be that severe. She went down to her normal size within 2 weeks but she couldn’t fit into her regular sized clothing until then. Thrift store, baby. You can buy some super soft shorts, sweats or even sun dresses for cheap since your kiddo will only be wearing them for less than half a month. Save your money for nice shorts in their size because that’s all they will be able to wear during physical therapy.

The other thing is to bring something that they are close to, that comforts them. Even though she’s fifteen years old now, she wanted her stuffed black horse, Midnight. The entire situation is so scary for them. Heck, it’s scary for us and we aren’t the ones having our legs broken and rotated.

Smart phones, tablets and pads are fantastic! There’s Wi-Fi in the hospital so Madison could watch her Netflix or Hulu while I emailed family and friends or watched my own shows. Believe me, the days are long when your child can’t walk very far. The surgeon had told us that she might be there for three days if everything went well but to prepare for five, just in case. Her knee gave our three times on the Wednesday we thought we were going to be released so they kept us until Friday. By the end of the week, Amazon Prime video was my best friend.

I’m sorry this one is short. I’ve got to get supper done and the girls to bed early. Madison has therapy in the morning, early, so sleep is our friend. I know it’s 4th of July celebration next week but I promise, I will still more information!

Keep the love flowing, keep the positive thoughts open and have a very blessed weekend!

Femoral Leg Rotations and Parents Part 2

PART TWO

I didn’t want to leave anyone hanging over the weekend so I’m posting today. Today has been a super rough day. She had physical therapy first thing this morning and had difficulty even moving her legs off of the bed to get up. My vibrant, bouncy daughter is shuffling along like she’s ninety years old. Through the tears she smiles, never wanting anyone to feel uncomfortable around her. She is truly amazing.

So how is she walking with two broken legs? Because of the steel rods they inserted down through the center of her femurs, it allows her to relearn how to walk without having to wait for the bones to heal. She was up and walking the day after surgery, albeit it was only a couple of steps but pretty impressive.

What to expect if your child has to go through the surgery or surgeries. Physical therapy!! Get your child into physical therapy at least six weeks before they have their surgery done. Muscle, tendons and ligaments will need to stretch with this rotation, regardless of the degree of rotation so if they are flexible and limber before the surgery, the less damage is possible. It also helps rebound quicker after the surgery. Nerve endings. We were told that nerve endings do not stretch. They don’t have play in them and if they are stretched too far they snap, which can result in temporary or even permanent nerve damage. Madison’s rotations were a huge 25-degree rotation on each leg, five percent more than what they had anticipated. She has ZERO nerve damage. Doctors swear that the physical therapy couldn’t help that part but I don’t believe them. They don’t know everything, as we’ve already learned. I’m a huge advocate for the physical therapy before and of course, after.

Things you are going to need. A walker, a wheelchair, a potty chair for over the toilet, a shower chair and a bedroom with no stairs. They will tell you that your child will be getting up and walking right after surgery but it’s only a couple of shuffling steps. Madison struggled just standing up from the hospital bed, let alone walking very far. One of the other things we got was a belt. It’s specifically made to go around their chest and under their arms. It is wonderful for helping them stand since their balance is non-existent. I recommend gathering these things and bringing them home before the surgery. We drive a Nissan Rogue and live five hours away from Children’s Hospital. We were set up at the Ronald McDonald house just a mile from the hospital (though this momma slept on the pull-out sleeper in Madison’s room) and if there are any donators out there, please consider donating to the Ronald McDonald houses. They are truly a blessing for families.

Anywho, I digress. The four of us drove down for Madison’s surgeries and they had her equipment there for us to take home. There was so much that my husband had to rent a truck and he and our youngest daughter had to take half of it home with them. There was no way we were going to fit the equipment, luggage and bodies into that SUV of ours.

Also stock up on lots of things for them to do in bed. Madison spent a good amount of time playing her games online with her friends but even that gets old. She received a care package from a sweet friend that had crossword puzzles, thread to make friendship bracelets, spirograph and other fun goodies like that. I also bought her some modeling clay to make some sculptures.

I know I will have more tips and ideas to offer. Things that you think about after this is already done so if I can help you before the surgeries, then I’ll be a happy camper.

One other thing that I’d like to point out. You are going to go through a lot of emotions regardless if you’re a man or a woman. My husband wasn’t freaking out over the surgeries themselves but over the healing and pain afterwards. I was freaking out over the surgeries (what if something went wrong and she didn’t come out of anesthesia, lost her legs, lost feelings, etc. Mom brains are crazy) so it was great when we talked about our fears and concerns with each other because it allowed us to be strong during the times when the other person felt weak. So definitely lean on each other. You may not understand why the other person is freaking out over what you consider fine but the same may go for your partner. Just understand that you have different fears and concerns and you can be strong together.

Have a fantastic weekend and we will talk to you next week!