One month later

 It’s hard to believe it’s been a month since we stopped lengthening. We went and got x-rays today to see how Amay’s new bone is forming. I’ve emailed images to Dr. Nelson for him to review. I’m so excited and anxious to hear back from him. 

Time has been going quickly and slowly all at once. This Friday will be two months since she had her surgery and we are a month post lengthening. The X-ray tech recognized us when we came in since Amaya is a “unique case.” He also couldn’t believe it had been a month since we last saw him. He asked how much longer we have to keep returning and I let him know we’ll get monthly X-rays for the next two months  

Okay so here’s the X-rays …

If you zoom in the cotton candy fiber looking white stuff is the new bone. So cool!

Dr. Nelson wrote back to say, “These look great!  She should continue to use crutches for walking but she can put full weight on it for standing. Plan should be to repeat x-rays in a month. I agree with the PT plan.”  That’s great news! Amaya was so excited to hear she can stand with full weight bearing. She says she feels more steady and stable while doing things (brushing teeth, changing, going up stairs, etc.). 

Once a week

    It had been five days since our last physical therapy appointment. The therapist checked in to see how Amaya’s been doing. She asked about pain and Amaya said it’s been “tolerable and ok.” She said it’s pretty much the same with no big peaks. She said the pain is mild and most days she’s not taking Tylenol.  She said it doesn’t fully remove the pain so she doesn’t see the point of taking so much medication.  

    The past few days we’ve noticed she’s been able to do things a lot easier in her day to day life. I let the therapist know that we see it in how she sits, how she moves in bed and when she sits in a chair, couch or her shower chair. The therapist said that Amaya has been able to maintain her range by the daily activities she’s been doing, which is great! With the combination of her daily mobility and physical therapy homework she’s maintaining and gaining mobility. The therapist was impressed and said that’s great!  

    The therapist asked Amaya how she felt about a goal of 130 degrees today. Amaya said it seemed doable and agreed. She did some stretches that were a bit painful but she was able to power through. She was at 130 degrees at her first measurement, an increase of five degrees since our last visit. The therapist told Amaya that said if she could maintain her range of motion then she can drop down to having pt once a week. She said that if we drop down and then Amaya begins to lose some range then we’ll add more days per week to get it back. Otherwise she can stick with once a week until she can begin to bear weight (in about five weeks) then we’ll go back to twice a week to help build strength and help develop her gait. 

    The therapist said that the sooner we can gain full range of motion the better. She said we don’t want to go slow especially since Amaya's been going fast so we’d like to keep at that pace. The therapist is requesting 2x's a week, just in case we need them, and if we don't we won't use them. It'll be nice to drop down to once a week for the next few weeks. It's great how well Amaya is doing. Thank you all for the support.

A functional knee

    At the end of our pt appointment on Wednesday the therapist mentioned that Amaya has a "functional knee." She said 0-117 degrees is considered functional and Amaya is at 0-125! She had been able to bend to over 117 degrees for about a week at that point but the therapist wanted to wait for a week to pass before officially saying she was at this point. It’s great news! She’s passed the threshold of where she could have long term damage to her knee. 

    We have one more pt from our original prescription but the therapist is going to ask for more because she said that even though Amaya is in a good place she wanted her to be in a great place. The therapist said it’s important to get her leg to a prime place, because she is so young and we want it to be great for her life. She would like to continue to work with her until she can bear weight on her leg. 

    It's great news and a great milestone! Yay! We were surprised that it's only been six weeks since surgery, two weeks since we finished lengthening and five weeks since she started physical therapy. Dr. Nelson was right the recovery for this lengthening has been much quicker and "easier" than with the external fixator. And we only lengthened about an inch where last time it was just over three inches. 

     It feels good to share good news with you and to have something to celebrate with you all. You've been supportive during the highs and the lows and it means a great deal. Each time you ask how she's doing, reach out, send a card or a message or a smile it means a lot to us. Thank you. We are so grateful. 

Working hard to gain some degrees! 

Amaya decided to celebrate with donuts, two at a time.

Just like that

    Monday's physical therapy appointment went great! When we got there Amaya and the therapist made a goal of 120 degrees in her knee. At the first measurement her knee was at 117 and next thing I knew the therapist said, "120." I was shocked and said, "just like that?!" She answered, "yep, just like that. Yep, you just gotta have a tough patient." I was so surprised! It's amazing to thing that in just a half an hour away can gain that much. 

    The therapist was super happy since it had been five days since our last session so any physical therapy she was getting was the homework we've been doing at home. We had ended at 115 the last time so just the five days of us working at home we gained two inches. At home we rod and we do about thirty exercises each day one or twice a day. But I never push Amaya to a breaking point, just a nudge. Sometimes gentle, sometimes not so much. But never as good (tough and challenging) as she gets at physical therapy. 

    She encouraged us to continue tot work at the homework and to massage etc scar tissue; as it releases it's making knee bends easier. The therapist reminded us that its six weeks until Amaya can weight bear on her left leg. That also means its been about six weeks since she had the surgery, the midpoint! Wow! She said it'll be like a "whole new leg" and encouraged us to get away some good shoes so she can have a "good foundation for her knee." 

That was the 117 she got right off the bat!

Resting in between exercises. 

Ask for a break

    When we started physical therapy on Wednesday the therapist asked Amaya if she wanted to make a goal of reaching 110 degrees. Amaya thought she was at 103 on Monday but once she realized she was at 107 she agreed to 112.  Then said, “120!” The therapist and I laughed. The therapist started working with Amaya while she was on her tummy. Amaya easily got to 110 degrees while on her tummy so the therapist said she might be able to get to 115 today. The therapist said that knee bends while on the tummy are difficult “its hard 'cause you're neutral at the hip.” Once she was on her back Amaya did some great knee bends. The therapist excitedly said, “ok this is where we get 115.” Amaya was working hard and was pushing through pain. The therapist asked Amaya what she thought she was at then asked, "Feels like 185?! Amaya laughed and said, "Yeah." Her knee measured at 112 then as they pushed to 113 the therapist asked, "do you need a break?" When Amaya answered, "No" the therapist asked, "if you do, will you ask for it?" Amaya answered honestly, "Probably not." By this point Amaya's knee was at 114 degrees. That was a huge accomplishment (it feels like she keeps hitting new ones each session). The final count of the day was 115 degrees! 

    The therapist praised Amaya for being so tough and working hard. She let Amaya know that in addition to being tough its also important to ask for breaks. She strongly encouraged Amaya to be honest in sessions and to not push herself to the point where she is in unbearable pain. She ended by saying, "Being tough is great, but not always." 

    I could tell the session was difficult and painful for Amaya. It's hard to gauge just how painful because Amaya will push through, no matter what. As we walked out I could see a tear escape her eye. Instantly I felt a deep pain in my chest, as a mother (I'm sure any parent would understand) it is absolutely heartbreaking. She cried the entire way to the car and most of the way home; in the way that I've seen her do many times before. Slowly releasing tears while not letting the pain get the best of her. Crying in pain while also knowing that it's part of her reality. It makes comforting her difficult. I know I can't take her pain away, I can't promise it will go away, in fact its the opposite. 

    This is the most pain Amaya has been in, in a while and it made for a painful evening for her and an emotional night for me. Watching her tear stream down her cheek I knew that that wasn't the time for me to feel my feelings. The priority at that moment was Amaya. Seeing her in pain, stuffing my feelings, taking care of her and getting her settled then allowing myself the time to feel and process my feelings was exhausting. It was painful and tiring. I only share this because I want the other PFFD parents reading this to know they are not alone. This journey, as a parent of a child with PFFD, is at times painful and exhausting. It is also inspiring and wonderful. 

You can see the great bend while on her tummy.

Her knee bend looked so great! 

We could also see definition in her muscles; she's getting so strong and buff.