Strong support system

Today we had physical therapy. We haven't seen Jennifer in a week, and won't see her again until next week. I updated her on our appointment with Dr. Nelson. She said she had heard from his office as well. They let her know what was "normal" for Amaya's knee. I let her know that Dr. Nelson said we didn't need to extend physical therapy, and I asked her what she thought about that. She agreed and said that, Amaya does real well with her homework and "she's got a strong support system." She said because of that she's confident Amaya will do fine. It made me feel SO good to hear her say that about Amaya and us. I'm proud to be apart of Amaya's "strong support system." It's sometimes tiring, often emotionally draining and painful, somethings are frustrating (insurance), but its always rewarding. Thank you all for reading along, you are also a part of our support system and we appreciate it!

Jennifer said that the focus now will be twofold. One part is on building a homework program that we can use at home (and ways to add to it) and second is on building up Amaya's strength. 

                                       

Amaya did 3 sets of 12 with a 1lb weight on her ankle. Jennifer asked, "These are easier for you huh?" Amaya said, "Yeah"    It's great to see her improving. You can see how high she can lift her leg with the weight on. We're going to be adding a 1 lb weight to our therapy homework and working up to a 2 lb weight. 

Jennifer asked Amaya if she thought her knee was getting better. She said yes because she felt her knee was better, "more stable." 
"How can you tell" -Jennifer
"When I walk I feel a difference."-Amaya

Jennifer added a wall exercise for Amaya. We'll be adding this to our daily routine (2 sets of 10). 

Next she stepped down in front. Jennifer noticed Amaya was pretty wobbly. Jennifer reminded Amaya that control is key! Go slow-that's the key! Amaya kept losing her balance. Amaya said her leg was tired (seems to be when she's falling more) and she was in pain (pain level 4). But toward the end of the video you can see she's doing better.  When she switched to the side block work Amaya still has the tendency to go fast. So again Jennifer reminded her that, "control is key! Go slow-that's the key! 

Here she had Amaya switch weight over to left leg while doing leg lifts (onto tippy toes). Jennifer noticed Amaya's ankle is waving side to side, so said to "let's try to control it."
"Control the motion" is what Amaya needs to work on the most. Once she increases her strength this will come easier. 

Appointment with Dr. Nelson

On Monday we saw Dr. Nelson. It's always great seeing him. Its like seeing an old friend we haven't seen for a while. He looked at Amaya's x-rays, had her walk and run down the hall, then looked at her knee on the examination table. He said her knee is very elastic and has a lot of movement. He said that was normal considering her knee (he reminded us that she had no ACL to start with. Dr. Nelson performed the superknee surgery on her knee when she was five to correct her knee instability). He said that the ligaments in there have gotten loose.

He said that Amaya's knee needs surgery to correct it. He said that he wants to wait until she's fourteen to do it. That way it will last her into adulthood. He said if he does it before then, then the knee may get loose again and she would need another surgery.

Dr. Nelson said to continue to go to physical therapy to learn therapy exercises (to learn exercises that she can do at home to strengthen her knee). He said he doesn't see a need to extend therapy after this prescription because Amaya does such a great job at doing her exercises at home.

He said the pain she is feeling is normal, considering her knee. He said that the muscles are working to compensate for the loose ligaments. He said right now we need to focus on pain management. She'll use her knee brace, therapy exercises, Motrin for pain, hot and ice packs.  He said that's pretty much all we can do right now. We will follow up with him in a year and then he'll look at leg length x-rays to determine how she's growing and any next steps.

The good news is that he didn't see anything wrong with the bones in her knee. Dr. Nelson was very happy with the range of motion in her knee -10 degrees to 150+ (that means her leg lays completely flat, and over extends a little bit, and when it bends it bends completely so that her shin touches her thigh). Considering she's had a leg lengthening that's great!

Why does she need physical therapy?!

      Friday I went to pick up Amaya from school. They asked why she was leaving early and I let them know she'd be leaving for a physical therapy appointment. The woman asked, "Why would she need physical therapy?!" She was genuinely surprised that a fourth grader needed physical therapy. It hit me how abnormal Amaya's childhood is sometimes. This was reaffirmed later when Amaya said that a kid in class noticed her scars for the first time that day. "He was like, 'Why do you have scars? Why would you need surgery?!' He didn't really get it mom." Again, another reminder that Amaya's life isn't common. And that's okay. It's one of a kind, just like her. When I explained to the lady at her school why she needed therapy and about her past surgeries, I was proud of Amaya and all that she's endured. She's a tough kid. Abnormal is cool. 

       Our therapist said she had't heard back form Dr. Nelson yet about Amaya's knee. We'll see him next Monday, which is before we see her again (as of now we're on a stand by list for PT this week). Jennifer asked Amaya how she did during the week. Amaya said fine, but that she had pain (about 5-6) since Tuesday (4 days). She said it started when her class did some work outside in their garden and orchard. I was pained to learn of her being in pain for so long. She said she was standing for long periods of time, squatting and moving rocks, and trying to stabilize herself on unleveled ground. Amaya said she didn't tell the teacher, and she hand't told Josh or I. It saddens me to think that she has accepted pain as a daily, normal part of her life. It's so normal she doesn't even mention it anymore. The therapist reminded her to let her teacher know when she's in pain so that she can sit and take a break when she needs it (I also reminded her later as well). The therapist also asked how she was doing with her homework exercises. Amaya said they were good, but still a challenge. She's done amazing on them! Hasn't missed a single night! Even when we get home late she'll do them before bed. 

       

This was Amaya stepping off of the 4 inch step. Immediately the therapist asked, "have you guys been working on this?" I said no. She said she thought maybe we had been because she could tell a difference. She said Amaya had improved in just a week of therapy! She said it wasn't much, but some. She could tell Amaya was improving. She had Amaya do them in front of the mirror so she could watch herself move and keep an eye on her right leg (it was leaning toward the left leg to help support it and stabilize her. Last week it was completely touching her left leg, so this was a bit of an improvement). After a few sets Amaya lost her balance and fell. She was able to catch herself on the bars next to her. It was painful to see her lose her balance like that. She just didn't have the strength to hold herself up. She fell a second time. She's resilient and kept on going, with a smile on her face.

Here's a short video of her doing the lifts. 

The therapist added a 1pound weight to Amaya's ankle as she did her side leg lifts. 

Amaya did great with the extra weight on!

Surprisingly the ones with the inside lifts were easier for her, Although, at home these are the most challenging for her. She did so many she lost count! 

Here she is doing stretch with the band on. She had to open, close, stand, sit, open and hold it.

Here she is doing knee bends against the wall.

       After therapy Jennifer offered Amaya some ice on her knee. She turned it down, but when we got home her knee was hurting pretty bad (which made sense since she had worked it so hard!). I put a bag of ice on and she loved it! She said next time she'll let the therapist do it there so hopefully it'll keep her pain managed. 

Three sets of ten

We had Amaya's first actual therapy session on Friday. The therapist had Amaya do some exercises and made some adjustments as she watched her. She stressed the importance of proper alignment when Amaya does her therapy exercises. Especially when she is doing her side legs lifts. She observed Amaya and pointed out that when she does them her leg is turning in to compensate for the pain and was muscles.  The bad thing is that when her leg turns in she's working muscles other than the ones she needs to be working on. So when she does the exercises at home we need to be with her to check for proper alignment and make any needed adjustments. The therapist upped Amaya's sets from 2 sets of 10 to 3 sets of 10 every day. She said what she was doing was a bit too easy for her. She said she'll continue to make adjustments as Amaya progresses to challenge her, but not hurt her. Its about finding the right amount for her and adjusting it as she increases strength.

Jennifer said she hadn't got ahold of Dr. Nelson yet to ask about Amaya's knee. She's hoping to hear from him this week. I am too, I've been concerned and worried about her knee. I'm hoping to get some answers soon. She also suggested that Amaya wear her knee brace at school during P.E.. She said ideally she should be wearing it anytime she's running, but to not stress over it. When we see Dr. Nelson I'll ask him how often he'd like her to wear it.

This was the girls enjoying the view outside while we waited for Amaya's appointment. 

Look at this cutie! This was a break in between exercises.

This was a new exercise the therapist had Amaya do. She had to squat and side step back and forth. Amaya said this was challenging and painful. 

Jennifer had Amaya step up and down on this 4" step. Its half the height of the 8" step she stepped up on during the evaluation. The strange thing was that this step was much harder for he than the 8" one. When Amaya stepped down her left leg was very unstable, and weak. As a result you could see Amaya's right leg lean in and try to stabilize and support it (like a crutch or scaffolding). Jennifer said it required more balance and this was tougher for Amaya to do. Jennifer realigned Amaya's leg and had her do it again. And, again. Jennifer said that Amaya needs to gain a lot of stabilization. She said the key thing sis to "Slow the motion" and "go slow." So that's what she did. The slower she went the tougher it was for Amaya. This caused Jennifer to add another exercise for PT homework. 

Therapy eval for knee pain

Today we had Amaya's physical therapy evaluation for her knee pain. Her official diagnosis is chondromalacia of the patella. The therapist, Jennifer was great. She spent an hour and a half thoroughly looking at Amaya.

Here's the good stuff...

• Amaya has really good strength overall
• Her alignment is good
• Her range of motion is great! Like really great! Her left leg is symmetrical with the right leg. This is a great achievement following a femoral lengthening.
• The therapist is optimistic that 6-8 weeks of therapy can give her some progress and can help alleviate her pain
• The therapist said she was glad we found some areas of weakness. Because that gives us something to work with

Here's the bad stuff and the stuff we need to work on...

• Amaya is in pain (sadly, all of the time. When she stands to long, when she sits to long, when she steps, walks, runs, hops, etc.). She's so sweet and tolerates the pain really well. She is such a tough girl and endures so much without little to no complaints 
• Amaya has little to no strength on her left leg (mostly on the outside and inner part)
• Amaya is favoring her right leg for many activities. The therapist thinks its because she's in pain and compensating for it. 
• She has three therapy exercises to do daily. They will focus on strengthening her outside and inner thighs muscles as well as calf muscles. Amaya is such a good sport about it and did her exercises tonight without any complaints. Lidie is a sport and she's excited to do therapy with Amaya 
• The therapist is pretty booked for the next month so were on the waiting list for many of our visits
• Amaya had some trouble with balance
• Her bedsore could be affecting her balance and/or how she moves her leg
• After the session Amaya was in some pain (4-5 out of 10. Even though we had giver her Motrin before the appointment).
• If we find that bone structure is an issue then therapy won't do much, (at that point we may have to look at surgical options). At that point we can teach Amaya pain relief strategies and body mechanics to help her.
• Amaya's left knee has a great deal of laxity. Her therapist was confused and very concerned with this. When you push on Amaya's lower leg the knee moves a great deal, with ease. There's a huge difference between the left and right knee. The therapist doesn't know if that's normal for a PFFD knee, especially after a superknee surgery. She is going to call Dr. Nelson to ask him his opinion on the knee and how she should progress in treating it. 

This girl is so funny. I love that she manages to be silly and funny and stay upbeat, always.

Here's a short video of her walking up and down a step. The therapist noticed that Amaya favors her right leg when she's stepping. She think its because Amaya is in so much pain when she steps that she tries to shift her weight to her right leg. Amaya says it hurt when she steps up and down.a

Sleepy girl. She was so tired on the way home. And when I went in to give her a kiss goodnight she said, "I'm so tired."