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.

She's walking!

    It was emotional watching Amaya take her first steps (again) today. We've watched her take "first steps" severals times over the years. These were special because her legs are the same length for the first time and her left femur is correctly aligned. It's like a whole new leg! And this may be the last time we see her take "first steps." Amaya's physical therapist wants her to take it slow so that she learns how to walk on her "new" leg correctly and safely. Dr. Nelson had said he wants her to use a crutch or two for the next month which will give her that time to learn to walk correctly.

    Her therapist was very happy with how she's doing. She said considering she hasn't used her leg in three months she's doing "amazing!' That shows how amazing Amaya is and how great her physical therapist is!  Amaya made so much progress in the thirty minutes we were there. I'm excited to see how she does over the weekend! 

These were her third and fourth steps. 

I didn't realize she would have Amaya walk as soon as we got

 there so I didn't have the camera ready.

She taught Amaya how to walk using one crutch. Her left leg was a bit shaky and felt a bit like it wanted to buckle. Amaya won't be doing that for a week or so (depending on how she does). For the time being she'll be using two crutches so that she can get a normal gait pattern. Once she's got that then she can with to one crutch. 

Sorry it's such a short video, I had to get out of the way.

This is how Amaya will be walking for the time being. It's called the four point gait. 

She moves her right leg and left crutch then left leg and right crutch. Amaya will be walking like this as part of her homework. In fact her therapist wants her to walk down the hallway at home a couple times a day. She also wants her to do it outside on the sidewalk to build endurance and practice. She said it takes about 5,000 repetitions before her brain will fully learn and adopt it. 

Stepping up and down. When she had to rely on the left leg it was more challenging but she was pretty steady so that was good. We can already see some strengthen coming back to her leg.

Knee bends while standing on left leg

Squats for the first time. These will help build straight in her left leg. 

They were challenging but she did great! 

At the end she had Amaya rest and did some stretches and measured her range of motion. 

It was at 143 so she'll keep an eye on it to make sure she doesn't lose much. The therapist said she may lose some range of motion in her knee as she begins to build muscle and strength in her leg, so it's important to keep up with those exercises.

New X-rays

We got new X-rays on April 22nd and got to see Amaya’s femur and new bone. These X-rays are two months since we stopped lengthening. For two months the new home has been consolidating. Amaya and I both noticed a visible difference between todays and last months X-rays.  

Dr. Nelson reviewed the X-rays and said she can now start walking. That’s right, walking! She can walk at PT and around the house but outside of that she still needs to use 1-2 crutches for the next month. Amaya is very eager and excited to start walking!

Side view 

Front view 

Back at PT

     It's been about three weeks since our last PT session on March 30th. We've been waiting for the new PT order to be signed and returned to the physical therapist's office. At times we waited patiently and other times not so patient. To be honest it's hard waiting and not having something, something that you know can help your child. It's a frustrating process, but part of the journey.

    During this time Amaya has made sure to do her part, doing her PT exercises every day without ever missing a day. I've done my part, which has been to try to get the order signed. It has meant many, many calls. Tuesday I was notified that the therapist's office received the new order. All the minutes on hold, the messages I left, the calls and emails were all worth it! We are all so happy and relieved! 

    We returned to PT on Wednesday and it was great to be back! Amaya's therapist noticed immediately that Amaya had done her homework and had made progress. That's great! At first measurement Amaya was able to get her knee from 0 to 138 degrees, that was without any work or stretching. In a few minutes she got her knee to 142 degrees! Since her range of motion has improved so much the therapist decided to focus the rest to the time on standing exercises.  

    Based on her last x-rays Dr. Nelson allowed Amaya to begin to weight bearing while standing. We're approaching the time when Amaya can begin to walk while weight bearing. Her therapist said it's important to get Amaya use to standing and building her strength to make walking easier. She taught Amaya some standing exercises which she will begin to do as homework. Then she worked with Amaya to develop her sense of balance and to reacquaint her eyes, body and brain to using both legs (on not one leg and crutches). 

    The new focus of pt will be standing exercises since her range of motion is doing so well and to prepare for walking. So exciting! The therapist said the path Amaya will follow is walking using two crutches, then walking with one crutch, then walking without crutches. 

Amaya prepping for the day's session. Look how naturally her left knee bends.

Standing leg lifts.

Standing on her left leg and lifting the right one. Amaya's left leg was shaking, showing it is weak and not use to carrying her body weight. It didn't cause her any pain but the therapist advised her to be cautious to not overwork her leg, so that she doesn't fall. 

The therapist had Amaya stand in front of her while she gently pushed her side to side,

 front to back and back to front. She had Amaya close her eyes because

 this helps with developing balance and retraining her brain.