Tag Archive | fear

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.

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 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 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!

Why I have been MIA part II

This slideshow requires JavaScript.

As you can imagine after reading my last post, I have been quite busy. Fighting hormones and having a subsequent hysterectomy is hard enough but I’m like all of the other mothers, wives and career women out there, unless it’s bleeding or broken I’ll keep adding stuff to my plate. In addition to moving to our 35 acres and bringing the horses home, I knew that we were going to need the proper equipment for us to function this winter. We live on the western side of the Colorado Rockies so that means we usually get A LOT of snow. I knew that a front wheel drive minivan and a front wheel drive VW Passat were not going to dig us out if we got hit so we knew we had to get a truck. Our problem? With all of the surgeries, doctor’s appointments, moving, getting hay, etc. our savings account was NOT in the black. Putting the word out to my friends that I was looking for a cheap truck a friend of mine text me that a friend of his had a four-wheel drive truck for $250, just needed a front brake caliper. I’m mechanical, I can handle some light work so after walking around it decided to buy it.

This slideshow requires JavaScript.

In my excitement that I got such a great deal, I didn’t ask how long it had been sitting, which turned out to be a year. A vehicle that sits for a year means that all of the gaskets, rubber parts have dried out and your vehicle will start leaking vital fluids. So after this baby was running for a while, puddles began to form on the ground underneath it. In addition to the seals and gaskets I found out that it didn’t need the brake caliper replaced because it was missing, it needed replaced because the person seized up the brake on that side, destroying the entire braking system in the front. But that’s still ok, I can do that and I have the tools to do that. I started taking the front end apart and to my terror found out that in order to replace the brake rotors (big flat metal plates that your brakes grip onto to stop your vehicle) I had to remove the hubs (parts/gears that make a four-wheel drive a four-wheel drive) I have NEVER removed hubs or repacked wheel bearings so this scared the bejimminies out of me. What if I did it wrong? Thank heavens for cameras in cell phones because I took pictures of every step of disassembly and I referred back to it often!

All in all I was able to replace the entire front brake system, resealed the critical leaking gaskets and have our $250 truck running for about $500 including the purchase price. I have taken it four-wheeling so I know it’s going to work great in the snow and it is now at the welder’s to get the snow plow put on. It was a lot of work but I have to tell you that I am super proud that I stuck with it, even when I was scared and doubted myself and now when I fire up that truck a wonderful sense of accomplishment flows through me. I did it myself and saved us thousands of dollars that it would have cost had we taken it to the dealership. We have a very functional, working truck for winter. Now to start figuring out how to do the body work!

Never doubt yourself. It’s ok to be scared and even ask for help but if you’re determined and want to do something new, just persevere! Remember, life is meant to be fun; enjoy the journey!