Community

It is a true gift to have people who get you. Its been nearly a week since we scheduled Amaya's surgery and I've already started to hear from our PFFD friends. These are parents who also have a child with PFFD. They've offered kindness, empathy and advice. I have a phone called scheduled with a PFFD mom this weekend to chat about Amaya's upcoming surgery. Her son, who's pretty close in age to Amaya, underwent lengthening with the Precise nail last year. She's already helped me so much! I can't wait for the phone call where I can ask all the things that I've been curious about! I've anxiously been searching the internet like crazy hoping to find any information. It'll be great talking with someone who's experienced it first hand.She shared some of the things we can expect for Amaya...

• that'll shell spend a few days in the hospital recovering

• that she'll use crutches (for quite awhile)

• that she won't be able to bear weight fully for awhile

• It'll be tough, but much easier than the external fixator (yay!)

We also heard from other families across the country offering support via zoom visits, and well wishes. Hopefully we'll be seeing another PFFD family from Oregon on their drive through Northern California late next week.

In addition to our PFFD family we are so lucky to be surrounded by amazing family and friends. Our community is amazing! These are the people who when they tell us, "we got you" I know that they do. Already the offers have come in to help care for Lidie, to feed Cocoa (our cat), make us dinners, let us vent, pick us up from the airport, research and help book our flights, and so much more.  

I'm blown away by all the love and support and I am so grateful for each of you. Thank you

When we got home today we had a package waiting for us. Our sweet friends the Wasserman's sent this for "Amaya the Amazing! The Crutch Buddies give padding to make using crutches a bit more bearable. These are the ones they used for their son and recommended them for Amaya. What a lovely surprise! 

We've got a surgery date

Friday morning I got a voicemail letting me know that Amaya's surgery had been scheduled for January 25, 2022. I was instantly happy, nervous and relieved. A minute later I was hit with a wave of emotion. I sat and cried. As happy as I am that Amaya will get her leg issues corrected and pain relieved I couldn't help but think, 'they're going to break my baby's leg.' Mostly I hate that Amaya has to deal with ongoing pain. I hate that she has to deal with surgeries and painful procedures. This will be her eighth surgery, eighth. 

At times I get sad and frustrated that this is Amaya's life, our life. And then the moment passes and gratitude washes over me. I'm grateful Amaya has an amazing surgeon. I'm grateful she has a treatment plan and that there's an end in sight for her pain. I'm grateful to have such a loving and supportive community. 

I got to spend lunch with Amaya, one of the many perks of working in the district where she attends. As soon as I told her her hands began to shake. The first thing she said was, "What?! You just say that out of nowhere?!" She was filled with all sorts of emotions. But mostly she was glad that a date was scheduled. The more she thought about it she began to worry about the thing she dreads the most...getting an IV. I suggested we not worry about that yet. And she agreed. So we focused on the good stuff...doing something to get rid of her pain.  

As the day and weekend went on Amaya began to ask questions...will she have to use a wheelchair? or a walker? If so, for how long? How are we getting down there? There are still so many details to figure out...traveling down, prepping for the surgery, taking time off work, etc. I'm beginning to prepare, make plans and arrangements and begin to research what's to come. Once that gets to be too much I take a moment to just breathe and to reach out for help and support. 

As we plan and prepare over the next two months the thing that will keep me going is our community. Made up of family, friends, coworkers and our PFFD families around the world. Thank you all.

Answers & a plan

    It's been three years since we last saw Dr. Nelson. Amaya was a 5'3 1/2"thirteen year old getting ready to have her eight plate removed. Even though I was taller than her, she seemed so tall and grown up. She's grown so much in these short years. Each time I look up at her I'm reminded of that. 

    At that last visit we made plans to come back for a follow-up once Amaya had finished growing (Dr. Nelson said that would be at about age 14). He projected she would grow to be 5'8." She now stands at 5'8 & a 1/4" I'd say that's pretty close (amazingly close!). He had made additional projections and gave possible treatment options but we were in a "wait and see" point in Amaya's journey. 

    The past three years she's grown but unfortunately her knee pain has also grown. Amaya began to mention she had knee pain a couple years ago. It's hard to remember exactly when because at this point it's become the norm. She's got a high tolerance for pain and don't mention it often. At times we could pin point and explain the cause; a busy day, lots of walking, playing basketball, etc. Over the last year she began to complain of knee pain more often and at times for no obvious reason. Sometimes she would wake up in pain, or if she moved her leg a certain way, or just laying in bed. The last year or so we've have a hard time getting her any pain relief. We tried a customized knee brace, ibuprofen, rest, massages, muscle relaxing creams, chiropractic treatment and created a 504 to give Amaya much needed accommodations at school. All gave minimal and momentary relief. 

    I've been calling to make an appointment to see Dr. Nelson for over a year. The Covid pandemic made that extra challenging. Between quarantine restrictions we were placed on waiting lists and continued to call. In October  I got a call that there was a last minute opening and we could go down the next week if we wanted to. To be honest I immediately panicked. I didn't think I could make the work & travel arrangements in such a short time. Thankfully friends reminded me to go for it and that things would work out, which they did. When I called back Monday we were able to secure the appointment and then we had two days before we left. It was a whirlwind. 

    We left Wednesday morning and began the ten hour drive down to Southern California. The morning of Amaya and I were both nervous, anxious and full of emotions. We were both hopeful there would be an explantaion for the pain and a way to resolve it. The appointment was wonderful! It was so great to see Dr. Nelson and to be have him treat Amaya. I instantly felt calm and was confident that she was in good hands. He reviewed x-rays, watched her walked and then manipulated her knee. He said that overall she's doing great! Her gait is good, her knee is doing well overall as well (especially for a CFP knee). He said it made sense that she was in pain and there were a several things he could correct. 

So here's the plan...
Phase One...Dr. Nelson will release the scar tissue on the outside of her thigh that was left there from her external fixator. He will also perform a femoral osteotomy, to correct the misalignment in her femur. Lastly, he will insert the Precise nail to do a femoral lengthening. She will undergo femoral lengthening to gain 2 cm length to compensate for her discrepancy (this will take about 2 1/2 weeks). Also we need to get an MRI to evaluate the cartilage as well as the TT-TG (to measure the patellar translation). 

Phase Two...a year after the lengthening her Precise nail will be removed and tissue will be placed to help hold her kneecap in place. 

    It was great to get answers and to know something could be done. Amaya was so grateful for that! Dr. Nelson gave her the option to wait until summer to begin phase one or to do it at his first availability (December or January. Without hesitation she said she'd like the soonest appointment. She explained that for her its a matter of how long she wants to stay in pain. She's ready for the pain to be over. And we're ready for that as well. Its heartbreaking as a parent to watch your chid suffer and be powerless to help.  

I'm so grateful we got to see Dr. Nelson, to gert some answers and a plan and to have been able to sneak in visits with family members. 

It's hard to tell in the picture but she's rolling her eyes and said, "ugh, do you have to?" 

The answer was yes, yes I have to. 

Here's a look at Amayas x-ray.

We snuck in a visit to Rhino records where Amaya picked up a Bikini Kill record.