On Wednesday we arrived to therapy only to find out that someone (maybe me) accidentally canceled it when I canceled the two days we'd be missing. Ugh. I was frustrated and upset. I hated that Amaya would be missing a session for no reason other than a mistake. But, the good news was that Amaya's next referral was approved and I was able to schedule her next thirty sessions. We scheduled them on Monday, Wednesdays and Fridays and tried to schedule them early in the morning or afternoon so that she wouldn't be missing so much school. I am so grateful to Marilou for all her efforts to expedite the referral so that Amaya didn't have to miss a session. As I was there scheduling the appointments another patient came in and was talking to a schedular. He had to rearrange some appointment times. As they talked the woman said that physical therapy has to take priority over your life and you have to plan everything else around it. They both laughed and the man added, "yeah, if you want to walk." Then he looked at me (we see him there quite often. He had a fixator on before for a broken bone and has talked to us a couple of times) and said, "you know what I'm talking about, right?" I knew exactly what he was talking about. Because even though there are times that would be more convenient for therapy, I take the times that I can get, because the bottom line is Amaya needs her sessions. Physical therapy plays such a big role in lengthening. It's important to not miss any sessions, especially during the lengthening portion, and to do the homework. It also helps to have a therapist you like, who knows what they're doing and who you work with regularly. We've been so fortunate to have Melissa as Amaya's primary therapist.
I forgot to post this picture before. We had taken it the day we left for beach camping. We didn't have the wheelchair and Amaya was sore from her therapy so I carried her. I didn't think I would be able to, but she's pretty light. Even lighter than Lidie. I was able to use the fixator as a "handle" to help hold her up. She said it doesn't' hurt at all. I can't believe how tall she looks next to me.
This is a new stretch we did. Amaya would use her right leg to push the left one down to help stretch it. We had to spend between fifteen to sixty minutes stretching her leg twice a day.
Here's some pictures of Amaya trying to lock the bar into her fixator. We had set an alarm on our phones each day to remind us to do our therapy. Since Amaya's leg has been so tight and hard to straighten (taking about an hour to straighten) we've been stretching it during the day. It hasn't been helping very much so we decided to lock the bar in during the day. We did this the last time her leg was tight (Dr. Nelson had recommended it back then) and that seemed to help. The first day it took about twenty minutes, and we kept it locked for half an hour, then each day it got a bit easier. Each time its quite painful for Amaya and she finally asked if she could do it, since she said we were "too rough." But, even when she did it she was in pain and in tears. And because of it she's had more knee pain during the day and she wakes up during the night crying. When I massage her knee and push down on the knee cap it helps. Some nights she woke up two or three times, but last night she was up almost every hour crying. It was sad to see her in pain and not able to rest. Tonight she did a bit better, but has already woken up once crying in pain.
The girls loved the circus the best. They got to play games and watch circus acts. They are huge fans of the acrobats and watched them perform about three times. This was the first time that Lidie was old enough to play the games and actually win something.
Here they are waiting to give high five's to the acrobats that they love. In fact they have their own acrobat routine they work on from time to time (even with the fixator on), but its hard to take any pictures because they tend to do it after showers, while their still naked. In the hotel they were doing some wrestling, acrobatic stuff until Lidie hit her lip on the fixator and cut her lip open. We've all been hurt by that fixator at one point or another.
On one of the days we went to the M&M store so the girls could pick their own color of M&M's. Lidie picked pink of course, and Amaya choose blue. I couldn't resist the dark chocolate ones and the mini's. And Lidie couldn't resist posing next to the girl M&M.
The girls enjoyed seeing all the fish in the aquarium in Ceaser's.
Here's Lidie showing off her face painting. Amaya doesn't like having her face painted, but asked if she could have one on her hand instead.
After watching a show at the Palazo the girls posed for a picture with the performers.
Our last stop before leaving was a new mall, Crystals at City Center to check out the tornadoes. Tia Amanda had recommended it to us since the girls love tornadoes, well mostly Lidie. Here's some of the pictures of the girls enjoying the tornadoes. They had a blast there: they played, ran around, looked inside the "tornadoes" and Lidie categorized them all by strength (EF-1 thru EF-5).
Since we knew we'd be doing a lot of walking in Las Vegas we brought Amaya's wheelchair, and it came in quite handy. Sometimes when Lidie was tired she'd ride on Amaya's lap and rest. We prepped Amaya for how many people would be there and that that would mean more people looking at her fixator so she brought along some of her longest dresses to help hide the fixator so that hopefully she didn't get that many stares. She still got some stares, but a lot of smiles with them, which was very nice. Amaya was able to shower in the hotel standing up, while I used a cup to pour water over her pin sites. We were able to modify things pretty easily.
While we were in Vegas I got an email from another PFFD mother in Virginia. She had emailed me about a year ago and we've corresponded back and forth ever since. She wrote to tell me that they would be visiting California next week and wanted to meet up. We were so excited to here this. This is the second family that we would be meeting from out of state. We met Ben and his family a few months ago and now Rory and her family will be coming out. I guess that's the nice thing about living in California, that people come visit here so often. This will only be the third PFFD family that we've ever met. We have several friends over the internet, thru email, thru the blog, and thru Facebook, but have only met two. In fact while we were in Vegas I contacted another family in Northern California and made loose plans to visit them in September when we go up to meet our soon to be born niece.
It's hard to explain all the emotions that these connections mean to me. I feel so overwhelmed, so comforted, so understood. It's funny after making plans with Rory's mom, I caught myself thinking, 'wow, we know so many PFFD families.' When in reality its only going to be three that we've met and a few that I correspond with. But compared to knowing no one, three seems like a lot. Especially in a world of 1 in 200,000 statistics, its so nice to meet another 1. Someone who has been on a journey like yours; who has had to seek out a good doctor, has had to learn about PFFD, has had to deal with stares, rudeness, and unwanted advice, someone who has had to decide what surgeries are best for their child, has had to ponder wether an amputation or surgery is best for their child, has had to navigate uncharted territory, and who knows just how lonely it is to be a 1 in 200,000 case. I remember those early months, and years when we knew no one, had never read a single blog, or knew of another PFFD family. It was such a terribly lonely time. We struggled to find information, and friends. And now that we have them, we are so grateful for them. The information and resources available now compared to six years ago is amazing. I hope that our blog gives another PFFD family some hope, friendship, help, information as others have done for us. And to our non-PFFD followers, thank you for being a part of our journey. We are grateful for such loving, generous people in our lives.