amaya at lake

amaya at lake

Tuesday, January 31, 2012

All appointments are finally set

     I just got off the phone with the anesthesia department and set up Amaya's pre-op appointment. As you know by now her surgery is set for March 6th. Her pre-op appointment with Dr. Nelson is March 1st at 10 am then at noon she has her pre-op appointment with the anesthesia department (wow, I just realized that's a month away). It'll be a busy, back to back kind of day. The schedule is  similar to the one we had last year. We'll meet with Dr. Nelson; he'll take x-rays, measurements, and answer any questions.  After that we'll probably have lunch at the cafeteria at the faculty medical offices (Amaya is looking forward to the yummy veggie food) then head down the street for her pre-anesthesia appointment. They'll take blood (which she handles like a champ!), measure her, weigh her, get a medical history and ask tons of questions. This appointment takes about and hour and a half. After that we'll be exhausted and meet Lidie for frozen yogurt. She'll be with her grandparents up until that point. We don't' know what time her surgery will be (we won't know that until the day before), but we do know that it will be longer than the last one. Her super knee procedure took about two hours and this one will be about four to five hours. We'll know more when we have our pre-op appointments.
    I have a great deal of nerves. Not overwhelming stress, which is great but, a constant low level of nerves. People keep asking me how I'm doing and all I can honestly say is "fine", and "good."  As I told my mother-in-law this morning, "I don't have the luxury of feeling all the emotions." I'm not sure if that makes much sense. Let me try to explain. It's just that there are so many feelings involved in preparing for such a difficult surgery, especially when it's for your child. I have felt all of these feelings at varying degrees and at different times over the past few years and especially these past ten months after we scheduled the surgery. At this point we have to get ready and don't really have time to be overcome by emotion. I don't feel like it would be beneficial for Amaya to have her mom be an emotional wreck right now, or Lidie for that matter. I feel like we're at the point where we just have to do, and be what's needed. It'll probably be this way for quite some time. I guess that's why they call it survival mode; you focus on what's needed to survive and throw out everything else. Now that's not say that I've shut out all my emotions; I don't have the power to do that nor is it healthy. At times when I do feel emotions I try to acknowledge them and "feel" them then move on. Sometimes they're of grief, despair, pride, love, hope, sadness, a feeling of powerless, and wondering how in the heck we're going to survive.  My amazing girls, my loving supportive husband, along with family and friends will see us thru what lies ahead. Wish us luck, were gonna need it.

Dr. Nelson

    The other day I was reading thru Dr. Paley's website (www.limblengtheningdoc.org). I like to check in often to see any new information,watch the videos, etc. While I was there I found a link to Dr. Paley's blog from when he went to Haiti after the earthquake in 2010. While he was there he worked with Dr. Nelson (Amaya's orthopedic surgeon). Dr. Paley had some very nice words to say about Dr. Nelson so I thought I'd share them.

     "I have known Scott for many years. He worked with me in Baltimore as a fellow for a few months. Scott is from California and for the past 3 years has worked in Santo Domingo as an orthopedic surgeon in a hospital run by CURE the organization under whose name we are here. Scott and his family are Adventists and came to the DR on a mission for the past three years. Two days after the earthquake Scott arrived in Port au Prince and began operating. He has been here ever since. What we are doing for 6 days is his life for six months. Scott was planning on returning to work at Loma Linda University. He has delayed his return in order to help set up a system here that will continue after his departure. Due to his efforts the hospital has an administration from Loma Linda which works with Dr. Arshay the Haitian medical director here. Due to Scott’s efforts there is orthopedic equipment of all sorts from plates to nails to external fixators to insturments. Due to his efforts these materials are organized in the storage room here. Due to his efforts there is now an xray machine and an image intensifier machine. The set up allows almost all types of orthopedic surgery to be performed. I don’t know how Scott does it. We are all exhausted from one week of the schedule here. He does this day in and day out. Scott is truly a remarkable person. If all of us had a bit of what makes Scott tick the world would be a better place. Scott exemplifies what in Judaism is called ‘Tikun Olam’ (fixing the world). Orthodox Judaism believe that if there is enough Tikun Olam the messiah will come. Most religions have similar concepts. I have incredible admiration for Scott and what he has done. The entire team has found it an honor to work together with Scott."


      It is nice hearing someone else echo the thoughts we have about Dr.Nelson. From the moment we met him (almost two years ago) to each interaction we've had with him he has been kind, gentle, professional and a very gifted surgeon. It's quite nice having a surgeon you believe in; it helps calm the nerves and gives us some peace of mind. Dr. Nelson still has a commitment to helping others and will be returning to Haiti in March (after Amaya's surgery). I hope Dr. Nelson knows how much peace, love and goodness he brings into the world; especially our family. 

Amaya shared her cast

      Yesterday Amaya took her cast in to share with her class (the one she had on after her super knee procedure last year). In class they've been working on using the who, what, where, when, why and how questions, so her class mates had lots of questions for her. Her teacher said that she couldn't believe how much Amaya knew about her leg, her PFFD, and her surgeries. Mrs. Griessbach said that she was proud of Amaya for speaking so eloquently to her friends. Amaya explained to her classmates why she needed the last surgery (she explained that she didn't have any ligaments in her knee and that Dr. Nelson used her muscle to create new ligaments). She showed her friends her scars, and where people signed her cast (she was especially proud of where her dentist signed it. It reads, "to my best patient ever. Dr. Nation") Mrs. Griessbach said that Amaya talked like a little teacher; she stood in front of  the class and asked her friends "so, can any of you tell by looking at me why I would need these surgeries?" A boy in class finally guessed that it was because one leg was longer than the other. Mrs. Griessbach said that the kids were so kind and offered to help Amaya with her upcoming surgery. They volunteered to push her around in her wheelchair, Amaya thanked them. The kindness of other kids always makes me smile.
     In a few weeks I'm going to go into her class and talk with her classmates about her upcoming surgery and about the fixator. I'm going to show them some pictures of the fixator,so they know what to expect. I will also read them Imagine...Amazing Me ( the picture book of other children with limb differences). I'm glad that Amaya knows her body so well, accepts it, can speak calmly, and eloquently about it to others. She makes me proud.

Sunday, January 29, 2012

A post from Amaya

Amaya asked if she could see her blog, then asked if she could type a post herself. Here it is.


I really like that I have a short leg it's fun to have a short leg.I'm kinda scared for my next surgery it sounds cool though. I hope I like my next surgery!!!amaya. I hope I have a fun week with my pffd!

Wednesday, January 25, 2012

50/50

     Last night Josh and I rented the movie 50/50. I had a promo code to use at Redbox, so the movie was free, which is always a nice treat. After a long hard day I wanted to relax and cuddle on the couch. The movie is based on the true story of Seth Rogen (an actor) and his friend  Will Reiser (a writer). In the movie the main character, Adam, finds out he has a rare form of cancer. The film follows not only how Adam, but how his family and friends respond and deal with the diagnosis. I won't say too much about the film because I recommend you watch it for yourself (and I don't want to ruin any of it for you). I will say this though; I was surprised by the humor that they were able to bring to the subject. There was a good balance of drama and comedy.
     Watching it I couldn't help feel a deep sense of empathy for anyone who has such a diagnosis to deal with.  And a deep sense of appreciation that Amaya doesn't have a condition quite so serious. Something that struck me was a line that a therapist in the movie says. She said that when a person is in survival mode, a person becomes numb to feelings and feels "fine." I knew exactly what she meant. I see that in myself. During the last surgery, and even in preparing for this next one I find myself getting into a state of numbness. I'm sure its a survival technique. A person can't live under a constant state of stress and high emotions. You can't function that way, I can't function that way. And what's funny is that the big things seem to be easier to handle than the little things.
     The part in the movie that was the most emotional for me was when Adam was preparing to go into surgery. Watching him deal with the emotions heading into a big surgery (fear, shock, hope, despair, loneliness, pain, etc.). I was so moved, and I wondered what Amaya was feeling those hours before her surgery ( getting her IV, waiting in the pre-op room, being wheeled away from us, waking up from anesthesia, etc.). My poor sweet little girl has dealt with such intense emotions and fears. And she will do it again in about a month. At this point I couldn't wipe the tears from my face quick enough. Knowing that she would feel any of that is too much for this mother's heart to bear.

Monday, January 23, 2012

Dinner at the hospital cafeteria

     Last Wednesday we went to eat at the Loma Linda Children's Hospital's cafeteria.  Amaya had requested it a few days before and it finally worked out to go. On the drive over she was so excited she had to take a break twice (she was getting too rowdy and being unkind to her sister).  Although most people don't usually care for cafeteria food, we do. We love going there. Since the hospital is an Adventist hospital the food is all vegetarian. And since its a hospital cafeteria its relatively low cost. So we can get yummy food for a good deal (in case you're wondering, yes we are vegetarians). We don't go that often, but try to go on occasion so that the girls learn to not be scarred by the hospital. Since Amaya requested it, we wanted to make sure to go. Lately she's been a bit nervous and scared about her upcoming surgery ( I don't blame her). We thought going there would help calm her nerves.
     When we got there Lidie had to go potty so I took her in, while Josh stayed with Amaya. We had Amaya  take a break in the car and calm down a bit before going in. When Lidie and I  got into the hospital the two main restrooms had a long line. And if you know anything about three year-old's you know they don't do great with long lines, especially to go potty. I remembered a "secret" bathroom around the corner and took her there. I had forgotten all about it. It's one that we found the last time that Amaya was in the hospital. It's funny, after being there several days you get familiar with all the different  bathrooms, cafeterias, chapel, garden, elevators, etc. It starts to feel familiar, like home. A home that you can hardly wait to move out of. 
     On our way to the hospital we made one stop; at the Dr. Martin Luther King Jr. statue in downtown San Bernardino. After learning about Dr. Martin Luther King Jr. and celebrating his birthday Amaya was so excited to go visit his statue. She could hardly believe that there is a statue so close to her school and home. She learned a lot of lessons from him; the importance of being kind and safe, sticking up for others, and the power of having a dream. All lessons that she's been taught along the way by us, her teachers, the many good people at Clare Cherry School. It's just so amazing and cool to see one person who modeled all those things. He's a great model for us all, and visiting his statue was definitely worth it.

The girls and Josh walking around the fountains in front of the statue.

Here's Amaya on the statue. She asked "was he really that tall?" 

Here's the girls being silly. Notice Lidie's shinny pants and shinny shoes (she's decided she's a rockstar).

These are their excited faces, even though Lidie looks kind of scared.

This picture is a little dark, but I love the silhouette. 

At the cafeteria Amaya shared a veggie corn dog with Lidie. 

I asked Amaya to smile and this is the face she made.

Then I asked Lidie to smile and this is the face she made. 

The view of  the hospital from the parking lot. It looks so calm and beautiful at night. 
You can even see Venus in the sky.

Saturday, January 21, 2012

Chonis!

    We have chonis! I'm not sure why that makes me so happy. Maybe it's because its one less thing to do before Amaya's surgery, or that I'm happy/surprised/proud at how well they came out. Or a little of both. In case you aren't sure what chonis are, they're underwear. That's what my aunts called them when I was little, so that's what I call them now too. 
    In case you're wondering why I had to alter her chonis, let me explain.  When Amaya has her fixator attached she won't be able to wear regular underwear, pants, shorts, tights, leggings, etc. The fixator will stick out from her leg (not exactly sure how far at this point, but from pictures I've seen its about an inch or so). On the other blogs I've seen the kids have had Velcro added to their chonis and pants so that they  can get their clothes over their fixator with ease. 
      They were pretty easy to make. I cut them from top to bottom. At first I thought I would do it right at the hip, but since her surgeon is going to work on her hip as well (she'll probably have an incision and stitches on her hip) I wanted to make the cut so that it wouldn't lay right on her hip. My aunt suggested cutting a few inches in from the hip, and that worked great. Next, I measured the length of the Velcro and cut it. I had half inch Velcro that I cut in half length wise so that it would be thinner. I pinned the Velcro in place then sewed it in place. And just like that, they were done. It only took about an hour or so.
      I'm gonna wait before I make any pants, or shorts until she has her fixator on. Luckily she can wear dresses and skirts until she has pants and shorts done. Those might be a little trickier to do, but my aunt has volunteered to help. Wish me luck. I'll post some pictures once they're made.




Another children's book

     The other night before bed Amaya picked some books to read. She picked Imagine...Amazing Me! It's a book we haven't read in awhile, but really enjoy. It was neat because this was the first time that she was able to read it herself. It was so sweet to see her read it to us. It's a picture book written by a mother whose daughter  has limb differences. It's a picture book that shows children with limb differences engaging in everyday activities. I've always enjoyed reading it to my girls and have read it to their classes on several occasions as well.
      I highly recommend it for other parents who have children with limb differences. It's called Imagine...Amazing Me! by Libbi Chilia and is published by Halo publishing.  I found it on Amazon for under thirteen dollars and it was well worth it. As I looked it up on Google tonight I noticed there is also a website called www.imagineamazingme.com that you might want to look at as well. 

Friday, January 13, 2012

I have a dream

       On Monday we will be celebrating Martin Luther King Jr.'s birthday. Today at school Amaya's teacher talked with the class about Martin Luther King Jr. and his dream. She asked the class about their dreams for their own lives and their futures. Mrs. Griessbach told Josh that when Amaya told her about her dream she got teary eyed because Amaya was so articulate, and sweet. Amaya told  Mrs. Griessbach that when she grows up she wants to be a surgeon like Dr. Nelson so that she can help kids like her.  "Kids with short legs, even shorter than mine." I'm very proud of Amaya; she is a kind soul. And whether she ends up being a surgeon or not her heart is in the right place.

     When Mrs. Griessbach asked the class to draw what their dream was, this is what Amaya drew. It's a picture of her and her friend Mason. He's her other dream. 
 

Tuesday, January 10, 2012

Journey girls doll

      Amaya has been wanting a doll with a wheelchair for quite some time now. And after months of searching we found some. First we found some at American Girl, then we found these at Toys r Us while we were holiday shopping. I was so excited to see this set, because not only did it come with a wheelchair but, with a cast and crutches as well. Since she might also be in a cast for awhile, and or crutches and or a walker (we won't know for sure until after her surgery, and as we go thru the lengthening process, as her needs will change).
       I bought this set this week ( I had a 20% off coupon, so the set ended up costing $21) and I will buy the doll next month. We decided to give this to her before her surgery.  We will be having a Love Party (more about this later) in February prior to her surgery. This will be a good time for family and friends to gather and fill her, Lidie and us with love and encouragement to help us get thru the next year. 

Writing worksheet

      As I emptied Amaya's backpack and folder I found the worksheets she had worked on that day in class. I actually really enjoy this, it gives me a small glimpse into what she's working on in school and how she's doing. Her teacher, Mrs. Griessbach is wonderful. Just a great teacher and we are so happy Amaya has her for kindergarten. Mrs. Griessbach is so sweet and thoughtful and writes notes for us and Amaya on the worksheets. I always wonder how she has time to do that for all her students. One sheet in particular was so cute, I had to include it. 


     I'm not sure if you can read the writing, but she wrote "Amaya was excited to see this chair!" And "I can't wait to push you when your arms get tired."  I thought it was so sweet that not only did she offer to help Amaya but, she also recognized that Amaya will want to push herself around.  Last time she had her surgery and was in a wheelchair (for four weeks) she was so independent and wanted to push herself around. She was quite proud of her mobility and her "driving" skills. 
      Once again, Amaya has been fortunate to have a wonderful teacher to help her after her surgery. Thanks to Ms. Tamara, Ms. Rosanda and Mrs. Griessbach.  All these teachers went above and beyond to help Amaya and I'm forever grateful.

Friday, January 6, 2012

January 7, 2011

     It just hit me a few minutes ago that today marks the one year anniversary of when Amaya had her super knee procedure done. In fact,  at this time last year we were in the pre-op room waiting for her to be taken back into surgery. They eventually wheeled her back at about three thirty. As she was wheeled away  my heart sank. A feeling I'll never forget. It was a mix of emotions, but so intense. All I could do was cry and hug Josh. We got updates from a pager that the hospital provided. Thirty minutes after Amaya was taken back we got a page saying that the surgery had begun (we were told that would happen when the first incision was made), which was just heart wrenching. The next two hours we sat, ate, walked, hugged and talked. Just trying to fill the time.  We were in a bit of a haze; numb to the world, overwhelmed, optimistic, nervous.
     Somehow we survived that day, that night, and each day since. Some moments were difficult, some trying, some wonderful. But, we survived. We owe a huge amount of gratitude to the many people who helped Amaya, and us. Family, friends, co-workers, teachers, who all gave love, kindness, support and strength to us as individuals and as a family. We will never forget the kindness and love extended to us.  Thank you all.

Thursday, January 5, 2012

The Boy Who Grew Flowers

     I first heard about this book over the summer as I read through someone else's blog. They found it by chance at their local library. I found it on Amazon for one cent. Including the cost of shipping it brought the cost to just four dollars; what a deal! The book is about a boy (Rink) who's a bit strange, in that he grows flowers all over his body during a full moon. He befriends the new girl in town, Angelina Quiz. He liked her because she was "forthright, honest and kind." Angelina's right leg is one inch shorter than her left leg. Rink decides to make Angelina some snake skin shoes for her to dance in. He makes a pair of shoes for her, and he makes the right shoe one inch taller than the left so she can stand "true, and straight and tall."
     I was excited to share the book with Amaya and with other PFFD families. Last night Josh read it to her for the first time before bed. She liked it a lot and said it was "pretty cool." I liked that one of the characters has a limb length discrepancy, just like Amaya. It's important for her to see others like her in books. It's important for her to know that even though you're different your similar to others. I like that Rink liked Angelina for the person she was and didn't let her leg influence his opinion of her. I also liked that Rink put so much time, effort and care into Angelina's shoes. The friendship, kindness, empathy and care shown in this book reminds me of all the many friends that Amaya has had over the years. Friends who are kind, loyal, empathetic, accepting, thoughtful and loving. I'm grateful for the tenderness of the children that have been so kind to Amaya. They have loved her for her, that's what she needs and deserves.
     For those of you interested in getting the book, it's called The Boy Who Grew Flowers by Jen Wojtowicz. It's published thru Barefoot Books.


Wednesday, January 4, 2012

New calendar

     Well I finally turned the page on our new calendar; it now shows the month of January. As I turned it, it hit me just how close March sixth is. There are only two months left, and I know that they will go by fast. Josh and I just looked at each other and sighed. He pointed out that (hopefully) the next ten months will go by just as fast. Honestly, I can't believe these past eight months have gone by as quickly as they have (since we scheduled Amaya's surgery back in June).
     Time is so strange, especaily when you have children. They can make a day feel like a month and a month feel like a day. Time spent waiting for a surgery, especially your child's is really hard to explain. The time spent waiting for a surgery is long, yet passes quickly. It is nice to have time to prepare, yet there are just some things that you can't prepare for. It allows for time to go through the cycles of emotions (fear, anxiety, acceptance, pain, denial, anger, hope, numbness,etc.). All the while you have no control over it. It keeps on passing, wether you want it to or not. So we've decided to control the one thing we can; how we deal with it. And enjoy the time we have until March sixth rolls around.