Surprise surgery

After the last x-rays (four weeks ago) Dr. Nelson reached out to let us know that Amaya would possibly need a bone graft and/or exchanging of her rod (using the same incisions, they would remove her lengthening rod and put in a nonmagnetic nail a millimeter or two bigger which would help stimulate bone growth). 

We realized he would be in Southern California for a two week window the last week of September and first week of October and that we would be in the area for one of those weeks. We reached out to see if it would be a good idea to go see him. Dr. Nelson said that if she was still in discomfort or pain that it would be smart to go ahead and schedule the rod exchange. He and his surgery scheduler have been working hard for the past two weeks to try to get Amaya on the schedule. 

She's been having discomfort and pain in both her knee and leg. Dr. Nelson had to borrow/steal some operating time from another surgeon. The other surgeon agreed to let him switch if she could observe the surgery since she's never done it. Dr Nelson and his surgery scheduler, Tammie, worked hard to get Amaya seen and we are grateful to both of them for their hard work and dedication. Even though the timing of us being in Southern California didn't match with available surgery dates, they fit her into the schedule.

Even though we weren’t looking forward to an extra surgery (this will be surgery number nine) we are grateful that this will help with healing Amaya's bone and lessen her pain.

At the end of August Dr. Nelson said that if Amaya had an "unexpected amount of healing" we would cancel the surgery. After seeing the x-rays she got this week he said that we'll continue with the surgery as planned.

Here are her newest x-rays, taken on Sept. 13 (four weeks since the last ones). 

It's been awhile...

    I started and stopped this update many times this summer but never quite finished it. I spent summer studying to take and then passed my ASWB exam (woohoo!). I am happy to say I am now an official LCSW.  

    At this point summer has come and gone. We've passed the six month's post-surgery point, which was July 25th. And today marks the six months post lengthening point, Aug.22. We spent summer resting and continuing to work on Amaya's physical therapy homework; she walks a mile a day, does stretches and exercises to build her strength and increase/maintain her flexibility. She had two physical therapy sessions and her therapist has requested more sessions. Once we hear back from insurance then we can schedule more.  

    We've had two new sets of x-rays and updates. Her x-rays are showing that her bone is healing and consolidating. However, the growth is slower than we'd like or expect. The plan in July was to continue with daily walks, continue with bone supplements and continue to monitor the bone growth. Six weeks later we got follow up x-rays and after looking at those Dr. Nelson said the plan now is to have her continue walking, keep an eye on symptoms (pain and discomfort), get x-rays in one month and follow up. If we don't see more bone growth and she's uncomfortable then she may need a bone graft with possible exchange of the nail. He said it sounds worse than it is. They would use the same incision spots as last time and put in a new non-magnetic nail, a millimeter or two larger, which helps stimulate bone growth. Dr. Nelson said, "Probably she'll be up and walking soon after." 

    Amaya is being such a trooper at the thought of another possible surgery. She smiled and said she was frustrated but would do whatever it took to get better. We joked saying she may get to ten surgeries rather than the scheduled nine, and we reminded her that she can get more of the hospital pudding she loves. She was happy about that! We're a bit frustrated but focusing on the positive; she's had a relatively smooth process and only another minor complication when she was six (her bed sore), she's able to walk, she's maintaining her range of motion, and her pain and discomfort is minimal.  

Enjoying the beautiful view after her first walk on an uneven path.

These two x-rays above were taken July 11th. Now compare them to the ones taken six weeks later…

    These x-rays were taken Aug 17th. I can see growth, but mostly on the left side (inside of her thigh) the outside doesn't seem to be growning much at all. Immediately Amaya was disappointed as she noticed a stark difference. She was frustrated ad wondered if the PT was even helping. We tried not to worry until we heard back from Dr. Nelson and tried to stay optimistic. As you can tell there's more growth on the inside part of her femur, especially compared to the outside. 

    Its hard to get a good look at the x-rays because these are photos of screens, so the quality is a bit poor which is a challenge for Dr.Nelson.  

Amaya realizing she could touch her butt with her foot-this was the first time since her surgery in January! 

These two were taken July 25, 2022 on her 6th month anniversary. 

She was excited and even gave me two silly poses. 

First day of 11th grade for Amaya and 8th for Lidie. They're getting so grownup! Amaya was so excited to start school without crutches and to be able to walk around campus. 

Five months

    Today marks five months since Amaya had her lengthening surgery back in January. She's recovering really well and making great strides. Each day and week we see her improving and its great to see. For her it feels like a long journey and at times she gets frustrated. Recently she's said things like, "I just want to be done (with pain and recovery)." And "I want to walk normal." Even though I understand her pain and frustration I have to also continue to help motivate and push her. We make sure she does her daily physical therapy homework, eats well, gets good sleep, stays hydrated and takes supplements and vitamins. These are often contrary to what being a teenager is all about so some days we have our work cut out for us. But her physical therapist reminded her that her body is needing "fuel" to grow and solidify her bone and do her PT homework. 

    The past month Amaya's physical therapist had wanted her to transition from using her crutch to using a walking stick while walking. The next step would be to walk unassisted. Around school she was still using the crutch (more to avoid peers and give them a visual cue to not bump into her or to rush her as she walked). Amaya didn't really need the crutch, but it helped. During her twenty minute walking sessions (part of her PT homework) I noticed that Amaya was reluctant to walk out in public and was having some hesitation about losing the crutch and switching to the walking stick. It had become a true crutch (emotionally and mentally); it was limiting her and preventing her from progressing. We had a couple of talks about it and once she was able to see it for what it had become, a "true crutch" then she began to transition away from it. After three days of using the walking stick Amaya was ready to try to walk unassisted. Now she's happy to be walking unassisted and is getting better each day! 

    When we went to her physical therapy appointment this week she went without a crutch or walking stick. It was interesting because her first thought was, "Will my therapist be upset with me?" (for walking in unassisted) but when she was met with praise and encouragement Amaya realized she was on the right track. This had been her first session in two weeks and the therapist was happy with how well Amaya has done with her homework and recovery. 

    What's next? We will continue with daily PT homework, see the therapist every two weeks with the focus being on working on agility and building strength. We will now get her x-rays every 6-8 weeks and continue to monitor her bone growth. We're giving her a daily bone supplement (with calcium, vitamin D and magnesium) to help with her bone growth. Dr. Nelson wasn't too happy with how her bone growth was at the last x-rays. He's not worried yet but we're keeping an eye on it and he suggested we add the supplements. Amaya's enjoying her summer and resting as much as she can. She's also taking a film class at the local community college and working one day a week. 

At therapy Amaya looked so tall to me! 

She had to go forward, backward and side ways (in both directions) while pulling 60 lbs. 

This is the most weight she's done and it wasn't easy. 

Amaya walking on the bridge by our house for her PT. Not a bad view! 

She's up to 30 min of daily walking which is about a mile roundtrip. 

Stepping and stopping her left leg while holding 20 lbs. 

Amaya did well with this and it was great to see her balance has improved so much! 

Lunges and side steps in the hall while hodgkin the 20 lbs. 

After these Amaya began to tire and asked for a break.

We went outside so Amaya could get a mask break (masks are still required inside the clinic and this was the longest Amaya had worn a mask while doing physical work since school got out) and she had a longer distance to do her side steps. At first she got overheated and had to sit and take a break. She had some water then felt better. 

Her therapist had her try jumping. I gottta say I was very nervous about this and worried she might fall. But she surprised me, as she has many times in her life, and jumped! Then did it again!

New X-rays

  These are Amaya's most recent x-rays. They were taken three months after she stopped lengthening and four months after her surgery. Dr. Nelson said we should continue to get x-rays every 6-8 weeks and continue to monitor the bone growth. He also said for her to continue with her current activity level.

This is the front view of Amaya's femur. Amaya's pt said she thinks there's more bone growth on the left side (inside of her thigh) than on the right side (outside)-I noticed this too. She suggested we mention it to Dr. Nelson. He said it is not worrisome, but that he'll keep an eye on it and monitor the bone formation. 

Here's the side view.

Return of Independence

     One of the challenges Amaya has had during this surgery and recovery has been her loss of independence. It's been mentally and emotionally challenging on her to have to become so dependent on us these past few months. For us it's hard to balance helping her without making her feel powerless and not taking it personal when we're the ones who she takes her frustration out on. Surgeries and the recovery process change the dynamic of our home each time. It's hard (painful, frustrating, and challenging) on all of us not just Amaya. Thankfully, we have a loving and supportive home life and support network.

    This past week we've had some victories and have seen a return of Amaya's independence. Amaya did her own laundry, has been given the green light to drop down to one crutch (for outdoor walking), she tackled stairs at school (this was unplanned since the elevator wasn't working and she had to get up to class. But she did it and was steady and felt safe doing so), and she's started doing more chores around the house. She's also able to do some "small things" like carry her own dinner plate to the table, return dishes, grab a drink, etc. When she had the walker it wasn't safe to do so. These small things are all adding up to be a big thing.

Stairs! She went up and down with no problems! Even though I was terrified the whole time. 

Amaya did her laundry this past weekend! This was the first time since she had her surgery! She was happy, proud and excited! It's great to see her improve and how these victories improve her mental health. 

Side lifts to build muscle, strength and balance.  

During the steps even though we could still see her left leg shake we can definitely tell she's improved.

Her therapist had her practice walking down the hall with one crutch before she would sign off to let her drop down from two to one crutch at school. Amaya is worn out and tired of having to use two crutches so she asked for the change. The therapist hd to make sure that Amaya is using a good gait when she walks. The therapist pointed out that Amaya tends to tilt her hips and turn in her right leg. Once it was pointed out to her she has been working on correcting it. 

Around the house she's been walking without a crutch for about a week now. Although she still uses a crutch to get in and out of the house; we have three steps, with no rail, so that's the safest way.

Building balance and strength

     Amaya has continued to go to physical therapy twice a week. The main focus has been on building balance and strength. The therapist has had her do resisted gait strengthening; she does exercises while pulling 24 pounds that are attached to her with a cable. This is a great way to build her strength. She has also started to do band work; she's got one at home the she does with her nightly pt homework. 

    Amaya's pt homework has continued to increase. It takes Amaya about 30 minutes each day to get through all her exercises. Plus the additional walking that she does throughout the day. She walks around the house without crutches or a walker. She's gotten steadier and more confident each day! At school she is continuing walking with her two crutches. Beside walking around campus she also walks in town about once a week (her school has open campus for lunch so this is a great way for Amaya to walk and do some PT). 

    Amaya has been improving day by day! She's still experiencing some soreness in her hip and knee but the therapist says that's to be expected after not using it for three months. And its a side effect from building the muscles. 

    Today the therapist measured the range of motion in Amaya's knee to see how it's doing. She reminded us that once you begin to build muscle its typical to lose some of the range of motion. Amaya had 7 degrees of hyperextension (straightening) and then 143 in bending! That's the same that it was two weeks ago! That's great news! It means Amaya hasn't lost any of her ROM! I know thats' a lot of explanation points but I'm excited, happy and proud. Amaya's "rocking it" as her therapist says so she's ow dropping down to PT once a week. We'll continue to get monthly x-ryas to monitor her bone development.

    Thank you all for the well wishes, love and support. 

Here's some of the band work she's doing. This is the band she's got at home and uses for these stretches.

High knees down the hall

Side lifts with the blue band

Sweet, silly Amaya.

Lowering and lifting herself onto the yoga ball while using her left leg. 

Side stepping while lifting 24 lbs.

A thirty minute session

    Amaya's walking is going great! She's been using the four point gait walk non-stop. She walked down to the beach on Friday, all around home and at school. Today she walked around the track twice (about half a mile) during PE. She's enjoying walking and had been waiting for this day eagerly. She's pretty sick of her crutches and anxious to be walking without them (but she's still got a few more weeks before that can happen). It's great to see her progress so quickly!

    It's amazing how much was packed into today's thirty minute pt session! Amaya did over ten exercises in that short amount of time! She worked hard and by the end was tired, sore and a bit worn out. As soon as she got home she took some tylenol and grabbed an ice pack. She's been resting ever since, and is still feeling a bit sore in the hip and knee. I'm hoping tonight is a good night for her. With Amaya it's hard to have her slow down and not push herself too much.  

Just one day after learning to walk with crutches Amaya walked out onto the beach! 

Her therapist called her a "rockstar" and was proud of her progress. She's now able to walk without crutches (but only at home and for short distances). 

She started pt today with a 4 minute bike ride. The therapist had her do this and all fo todays exercise to, "help build strength and good knee mechanics." 

Then she had her do steps up and down on an 8" step (this is what the average step is) and its importuned Amaya be able to safely step up and down. Amaya's left leg started to shake as she did this; a sign her muscles are working hard. The therapist is always close just in case Amaya were to lose her balance and fall (although the therapist doesn't think this will happen but she want to be safe).

Amaya did some side steps down the hall and back. 

Amaya had to do some high knees back and forth which also had her left leg shaking so much. 

Then she did some side steps and squats.