Tag Archive | surgeries

Another Era Coming to an End

The days are getting shorter, the end of another decade is less than 25 days away and time doesn’t stand still, for anyone. If you want to survive and thrive, you have to be open and embrace change. I have to say that I’m thankful for my girls to help me do that.

Blogging is on the way out and vlogging is in. I won’t lie, it is a lot easier to vlog than it is to blog. At least for this ADHD momma of two teenagers. We are always on the go, always doing something and when I sit down at my laptop it’s to get a novel or a story done. So I’ve gone to the dark-side. I now have TikTok (so stinking addictive, won’t lie) Instagram and yep, I even have my own YouTube account. I only have two subscribers at the moment but it’s so much easier to catch everyone up while I’m riding one of my ponies than to sit at my computer. Multi-tasking my Lovelies, multi-tasking.

So while I’ll still be keeping everyone updated on the femoral rotations, the physical therapy, the surgeries (yep, she has more planned) I’ll just be doing it from YouTube. I’ll also be doing some other fun things like promoting my books because if I can’t toot my own horn, who will? Being a horse owner of 4.25 horses and also so many other life issues that I think we ALL need to talk about and express in a safe environment.

I’m not saying goodbye here because let’s face it, life changes so fast and we could be reviving the typed word again, so it’s just so long for now and hopefully I’ll see you on YouTube! My channel is https://www.youtube.com/channel/UC91IfIMt4acbgduOpdObjmA?view_as=subscriber

Femoral Rotations November

Yeah, the weekly thing just isn’t going to work. Kids are in school activities, Madison still has physical therapy 2-3 days per week and I’m still having to get my work done.

We spent the last couple of weeks getting fencing fixed so the horses had access to the barn and we had hay delivered. We still don’t have firewood in for winter but the truck broke down and was pretty costly to fix it. Will need to sell it before getting the half a cow in the freezer and wood in for winter.

Tomorrow marks the long awaited day for meeting with the ortho specialist coming in from Grand Junction. He will be the one who basically decides if he can make something for her to correct the rotation in her ankles. All of my hopes and prayers are on his saying yes. I’m trying to have faith that this doctor is as open and receptive as Dr. Rhodes has been.

There’s been lots of struggles and ups and downs. She has a popping in her bad hip but we aren’t having X-rays done at this time. Dr. Rhodes believes it’s an IT band that is rubbing and slipping off of her hip bone caused by the screw. She has to wait until May before they can remove the screws and the rods so basically she just has to deal with the pain. That’s super frustrating for me because it happens whenever she walks, goes up stairs, sleeps, moves, anything. She was finally released to ride her horse and we joyfully went out to our ponies and rode bareback; best way to get back in shape and core built up. I recorded it, of course, bawling with how wonderful it was to see her back on her beloved Chewbacca (the video is on my Facebook page) only to have the joy come to an abrupt end. The way her hips sit on her horse causes the screw to push into her hip bone which causes pain. A goal she had worked so hard for became something she can’t enjoy doing. We are going to try different saddles and hope that with the adjustment of her hips and the way she’s sitting, it will allow her to ride without so much pain.

New things that we found out. Sitting cross-legged is actually comfortable for her now. I was mortified and instantly pissed off when I found out that some elementary teachers tried to FORCE her to sit “criss-cross-applesauce” despite her saying it didn’t feel good. PEOPLE, FRIGGING LISTEN TO THE KIDS WHEN THEY SAY SOMETHING DOESN’T FEEL GOOD. I’m SO sick of adults MICRO-MANAGING KIDS! If they are sitting in a W shape and it’s comfortable to them then let them do it! YOU are NOT a doctor and there could be something majorly wrong! The more I’m researching this deformity the more common I’m finding it is. SO many kids having to go through this bullshit. Venting over.

I will say I’m grateful for all of my friends and support. For those of you going through this, hang in there. I know exactly how exhausting it is. Everyone on the outside looking in sees your child getting better, doing better but they aren’t there 24/7 when the swelling or the pain hits. The frustration your child feels when they can’t do something they used to do. New thing we just found out about. You know how Madison literally had to learn how to walk again? Her brain had to learn how to communicate with her new thigh muscles? Well guess what, it has to relearn how to run too. You would think the brain would click and go, “Oh yeah, I just opened up the communication lines to these new muscles to walk so it must be the same line for running.” NOPE. 5 months after surgery and she’s just now starting to learn to run. Her muscles on the outside of her thighs are trying to fire, not her new front thigh muscles. Can you imagine how frustrating that is? And all I can do is hold her when she cries.

So please hang in there. Be gentle with yourself, be super gentle with your kiddo. Lots of love, forgiveness and patience is needed. Love you all and peace out till the next time.

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!

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 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!

Femoral Leg Rotation and Parents

I’m getting past my fear and my anger and going to post this blog to hopefully help other families who are going through or maybe prevent this from happening to their child. This blog is not going to have a set time for release. It could be several times a week or just once a week. It honestly depends on how our healing is going (and I say ours because as a mother, I’ve grieved with her, I have grieved for her, I have raged against the doctors who wouldn’t listen to me and I’ve come to acceptance, all forms of healing). My daughter has super good days but she also has super bad ones so I need to be there for her. With that being said, I hope that this can help others who are going through this.

What is this blog all about? Well, this blog is about doctors not listening to parents. This blog is about parents learning to take control and having a voice for their child. This blog is about what to expect if your child has to go through this procedure. This blog is for venting and also offering support in the knowledge that you are not alone. Most importantly this blog is to let you know to accept all of the emotions! Don’t let someone that you shouldn’t be scared, angry, upset, worried. DO feel those things! You are supposed to! God, the Universe, whoever you believe in (or don’t) gave us emotions to experience. NOT JUST THE GOOD ONES! So accept those emotions, they are there to guide you, let you know you are still alive and they are a part of you.
So a quick rundown because I’m sure our stories are going to be similar. When Madison started walking, my husband and I noticed right away that her feet weren’t right. We took her into her pediatrician and he told us that she was pigeon toed and would probably grow out of it. We accepted that and as with life, other things came up and we couldn’t address it again until she was six. We were living in another town at that point and took her to the pediatrician there. We were told similar stories. She was pigeon toed; she would grow out of it. It just didn’t feel right so we took her to a pediatrician in Steamboat Springs who told us she was double jointed and she would excel at sports. This explanation sounded even worse but every doctor we took her to up there told us there were no issues. She would be fine.

Fast forward to her now being thirteen years old. She’s still having issues with tripping, wearing shoes out irregularly and just being uncomfortable. It’s documented on all of her yearly exams but nope, there’s nothing that can be done for it. That summer, she stopped riding her horse as much. When we asked her why, she said her knees and hip hurt. We knew it was related to her legs and took her into her pediatrician and demanded that we be referred to an ortho. The orthopedic doctor took x-rays of her legs, examined her and said that one leg was slightly longer than the other one and she needed to have a lift put in her shoe. It didn’t sound right but at least we weren’t being told that it was normal.
She wore the lift for a couple of months but got progressively worse. I refused to take her back to that orthopedist, frustration that nobody was taking us seriously was mounting. Finally my husband took her in to her pediatric doctor and was adamant that something had to be done. They prescribed physical therapy and the following week he took her into her appointment. I still don’t have this gentleman’s name but I love him. He made her walk, took one look at her and said he couldn’t do anything for her. The turn was NOT in her lower legs, it was in her upper legs and no therapy would help her. He recommended she go to the gait clinic at Children’s Hospital in Aurora. The appointment was made but we had to wait three months before we could get in. In the meantime, the pain in her hips were getting worse and she stopped riding her horse.
The staff at Children’s Hospital was amazing and they had a team of ten professionals to go over all of her tests and videos. No stone was going to go unturned until they had answers. Unfortunately, we wouldn’t get the answers until January and it was the worse news we could expect. Both of her femurs were twisted. Because of this deformity it was causing undue stress on her knees, hips and spine. Degeneration was already happening and surgeries were recommended immediately. Unfortunately, the only surgeon who is properly qualified and experienced to do the surgeries was booked until May 20th, 2019. We would have to wait until then to get her surgeries done.

Here’s where it gets interesting. With this type of surgery, they have to break both femurs (thigh bones) in half, rotate the lower legs until they are in proper alignment, slip a titanium rod down through the center of the thigh bones, screw in bolts/screws into the hip at the top and also above the knee to hold the bones and rods in place until the bones heal. Because her muscles, nerves and tendons will be rotated also, she will be learning how to walk all over again. Her brain has to relearn how to talk to new muscles to allow her to learn balance, movement and stability. We were basically going to have a one-hundred- and fifty-pound toddler.

The part that makes me so very angry, even to this day; if any doctor had listened to me, if I hadn’t accepted their bullshit and had fought for my daughter, they could have put braces on her legs that she would wear at night that would have corrected her thighs. NO SURGERY! But because her bones have already solidified, the only way to correct it was surgeries. And they wanted to do both legs at the same time. Great.

Another problem that we were fighting with was that because it had been gone undiagnosed for so long, her left hip was already being worn irregularly and there was damage to that ball and socket. The surgeon was hopeful that once her legs were put into proper alignment that inflammation would go down and hopefully, we can reverse any kind of injury without surgery but we won’t know until she is completely healed, which is a 9-12 month process. This isn’t a sprint, that is for sure.

I’m going to wrap up this post for now. I need to get my daughter up to the bathroom, feed her and give her the pain meds she’s on but I promise I will next write about the surgery and hospital experience. There were things that we weren’t told that I think all parents need to know. Remember, if your child is pigeon toed, walking irregularly, their gait is off, go get a second opinion. Maybe even a third, fourth or fifth. If it just doesn’t sit right with you, follow your gut. You were given emotions and instincts for a reason.

And any doctors out there reading this, a little piece of advice. ALWAYS listen to horse moms. We have been trained to watch with an eagle eye if a horse’s gait is off. We know immediately and instinctively that something is wrong. We have that same gift with children. Don’t blow us off, we might actually know something that you should listen to.