Tag Archive | mom power

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 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 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.