It’s been 8 months since my last post and 2020 fell apart? Related? I don’t think so BUT they also cancelled Supernatural so I’m thinking they just need to bring the boys back.
So much going on with us. Madison is still in physical therapy but we are hoping her check in with the surgeon will finally be the good news we are waiting for. She went into Children’s Hospital at the end of February to have her hardware removed from her legs. Surgeon did great, the nurses not so much. They released her too early and she started bleeding. All over the hotel, pools of blood everywhere and when I would call every hour, they kept telling me it will stop, just replace her bandages. I’ve kept the pictures to remind me how scary it was and to push her during her PT. I want this to be done just as much as she does. It’s been a long two years.
I’m back to writing and really enjoying it. I started a new series, End of Crows that was supposed to premier at the Denver ComiCon but then COVID happened. Damn it. I’m hoping it takes off and helps us get into a financial position to buy our own place. We lost everything when we shut our ranch down for Madison’s surgeries. Luckily we were able to find pasture to lease for the horses. I think it would’ve devestated both girls if we had to get rid of the ranch AND their horses. It’s been a tough two years for sure but we are bouncing back.
I’m going to take advantage of my site here. I’ve been using my creative muscle and making some cool book trailers so if I can post them here, I’m going to. Guess I’ve missed human communication more than I realized.
I hope you all are staying safe, sane and kind. Lots of hatred out there so we need to spread some love. Take care and will talk soon!
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
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.
Yep, I missed a week. Actually, I missed a couple of weeks. I felt guilty at first, for all of those who read this, that I was letting you down but I had to take some time for me. I didn’t get on social media or meet with any friends. I really needed to reassess my life because I was ready to end it. Yep, I said it. I was ready for the big D.
Friends, let me tell you, when you are down, vulnerable and exposed, there are souls who will come into your life disguised as kind people who want to be your friend and then take you to the cleaners. I must have sucker written across my forehead because I got scammed a couple times and the timing couldn’t be worse. So I needed time to lick my wounds and heal my soul. It’s still not healed but I feel stronger than I have…until today.
Madison’s four month post-op was today so she had to have x-rays done two weeks ago for her surgeon to see. Of course I took pictures and I’ll admit, I didn’t think they looked very good. I showed them to her physical therapist who agreed, they just didn’t seem right. Large lumps and stalactite looking bone formations surrounded her surgical breaks but nothing was filling in at the actual breaks. In another image, it appeared she had a fracture going through the center of some of her new bone growth. Again, not good. So the imagination takes over and you begin to wonder if she is going to have to have surgeries again, or if her bones never heal, would she have to endure grafts? It goes on and on. These were all questions we wanted her surgeon to answer. The least of our concerns were how her ankles turned in when she walked. Worry and stress about the x-rays were on the forefront of our hearts and minds. The appointment today couldn’t come fast enough.
So now we are an hour past her appointment and I have a migraine from the information I’ve received. We were completely wrong about her x-rays, which is WONDERFUL news. Everything is healing perfectly and she is on track. She was even released to start riding her horse again. Best news ever! Then he addressed the ankles. With the extreme inversion, we need to start with orthotics to see if that straightens her ankle/knee and hip alignment. If it doesn’t, she would need to go in for surgeries that are more extensive and complicated than the surgeries she just endured. He said they are way worse than her femoral rotations and he will do them if she needs them…but only as a last resort.
I’d like to end this on a happy note but today I can’t. I’m kind of over everything, if that makes sense. I’m over scammers, I’m over fake friends, I’m over doctors who should listen to parents when they bring their child in YEAR AFTER YEAR saying that something is wrong with their child when they walk/sit. I know I’m the only one who can get out of this funk and I will. I have two incredible girls who deserve to have the best mother possible. I just need to take the time for ME (away from the family so they don’t see my tears) and figure out HOW to get my big girl panties back up and be the Momma Bear next to my little warrior. Actually both of them because my Ashlie girl has been right there alongside every step of the way. What amazing girls I have.
So if your child is walking/sitting wrong and the doctor says it’s normal or they will “grow out of it” or they are just flexible or “double-jointed”, do you and your child a favor. Go get another opinion. Preferably from a professional from Children’s Hospital because the home-town docs I’ve experienced have too much of a God complex to give parents any credit. Take care of you and your family first, screw their feelings because they sure don’t care after the fact of what you and your child will have to endure.
Peace out and many blessings until the next time.
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!
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!
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!
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!!