amaya at lake

amaya at lake

Wednesday, February 29, 2012

Snow day

     Yesterday Josh and Amaya took a snow day.  I'm so glad they did. With all that's to come our way in the next few days, they needed (we all did) an extra day to just stay home, to play, to snuggle, to laugh, to rest. It was such a wonderful day. We made sure to sled, have a snow ball fight, roll snow, make snow angels, and build a snow man (we tried, but have nothing to show for it). Then we came in, had homemade vegan blueberry muffins (don't let the word vegan throw you off, they're delicious!), potato and corn chowder. Yum. I can't believe we forgot hot cocoa; but something tells me we'll make up for it. 
   There was something magical about this extra day at home. It broke up our week and made it feel like a mini weekend. The smiles on the girls faces, the laughs we shared, made it all worth while. I'm so glad Amaya got one last sledding day in before her fixator comes on.    

Amaya sledding in the driveway next door (no one lives there).

This is such a fun picture of Lidie. She's getting ready to roll a snowball down a hill and watch it grow. 

Here's silly Amaya showing me the snowball before she throws it at me.

 My sweeties, making snow angels.

Here they are rolling snow balls  down a hill.

Josh enjoying a rarity ( a snuggle from Lidie).

      Later the girls played inside. After playing, dolls, super-heroes, and cars, they started playing doctors. It was very cute. Amaya came and asked me if I was okay or needed to see a doctor. I said my back hurt so she took care of me (she had Lidie attach a band aid). Then she told me that she works with Dr. Nelson and would also be helping him during Amaya's surgery. She said that Dr. Nelson was very kind and a great doctor. Then she told me how to take care of a fixator (do one to two hours or minutes of physical therapy each day, wash the fixator every day). Then she started showing me how to wash it; it was so cute to see her in "doctor mode." She's funny. She said that we should wash her fixator last, to make sure that all the shampoo that might have fallen in would be rinsed off. It was so funny, because I never said that, she came up with it all on her own. She had a mix of made up and real guidelines. But it was sweet to see her be so calm and realistic. "It might hurt, but that's why we give you pain medicine, to feel better. Amaya will be okay."
   Tomorrow we have our pre-op appointments with Dr. Nelson and the anesthesia department. I'll let you know how they go.

Sunday, February 26, 2012

A day at the beach

     At this point we are about one week away from Amaya's surgery. These past few days have been tiring and draining. We've been thinking, wondering and worrying about the upcoming cuts at Josh's school district. At this point, our thought is to proceed with the surgery. For many reasons. Mostly because; Amaya and us are ready, we have some faith (not blind faith, but the realistic, hopeful kind) that Josh's position will be secure. But we are also preparing our own worst case scenario plan, so that Amaya gets the care she needs regardless of what happens. It's just been another stressor that we could do without, but in a strange way, it's given us a distraction from reality. This week I also had a toenail rip off completely and yesterday we got a ticket. Just a bit more craziness to add to our plate, but all the while we are thankful for how good we have it.  This past week a fellow PFFD parent (from the PFFD Facebook page) posted that their child has been diagnosed with leukemia. We empathize with them and all the other parents who are facing other serious illnesses. We are very aware that it could always be worse, but ever so thankful that it isn't.
     We are enjoying the last of our days before the surgery. With almost daily trips to the park, visits with family, a yogurt date with Amaya's friend, feeding ducks, walking around the lake, etc. It's funny because even though I know that the surgery is nine days away, it sometimes feels so far away. I'm working hard on enjoying each moment and savoring the time that we have. It's definitely the calm before the storm.
     We are continually receiving calls and texts from family and friends asking how we're doing, and expressing love and support. When I talk with some of them they seem more anxious and worried than me. In a strange way I feel the need to try to comfort and reassure them. All in all we're doing good. We have moments that are tough, but they soon pass. We are taking things day by day, and moment by moment.
     On another note, on Friday night the show 20/20 talked about recent advances in cosmetic surgery. The last few minutes showed Dr.Paley and some lengthenings he did for men who wanted to increase their height. I recorded it so I could watch it.  I heard it was going to show the new internal lengthening device. As Josh and I sat to watch it, Dr. Paley was in an operating room while he was being interviewed. He held two tools in his hands; a hammer and a long rod (like a nail). After hammering the rod twice he said "did you hear that? That was the bone breaking." At which point Josh asked me to turn it off. "I can't watch that" he said. I turned it off, and haven't decided if I'll watch it later or not. Some of you might find it interesting though.
     Thank you all for the well wishes, calls, gifts, and texts that we continue to receive. And most of all thank you for your love, care and concern.
    Yesterday Josh took the girls to the playground at the Loma Linda therapy dept. to play while I went to my book club. Later we met his parents, and sister (and her two kids) at Seal beach. On the way we picked up some pizza from Valentino's in Long Beach. My husband did his undergraduate work at CSULB. Getting pizza from Valentino's is a tasty treat that reminds him of many good times while at college. Here are some pictures from yesterday.
Here are the girls at the playground in Loma Linda. It's a great facility that we'll be visiting daily for Amaya's physical therapy.

The girls being silly with their cousin Myhkiah.

A beautiful sunset to calm the soul.

The girls and their cousin and Paco & Grammy (Josh's parents) walking on the sand to enjoy the sunset. It was cold!


Josh wrote Amaya's name in the sand. The kids are playing with the water.

Lidie next to her name. 
Here's a picture of our sweet Amaya.

Friday, February 24, 2012

Another nurse on our side

    A family friend of ours, Grammy Diane, as our girls call her recently introduced us to her friend, Mary who is a retired pediatric nurse.  Mary has twenty years experience working in the field, as well as caring for pins in her own leg and a halo with pins in her husband's head.  She will make a great resource to us after Amaya's surgery. She only lives about five minutes away which is very helpful. She came over to meet us and the girls. She was not only knowledgeable, but kind and sweet. The girls liked her a lot and felt comfortable, which is really important.
  In addition to Mary, Josh and I both have cousins who are nurses, whom we can ask for help and advice. And we also have a family friend who also cared for her husband's halo and the pins in his head. She also has had issues with open wounds and can give us a lot of advice on caring for Amaya's pin sites and how to look for signs of infection. We are grateful for the many "experts" in our lives who we can call on as needed for help, advice and recommendations. It's nice to be able to have others to count on.

More stress

    In addition to all the "normal" stress that we've been under we now have some additional stress. Josh's school district is once again facing major budget cuts (about 22 million). Which means many layoffs, cut in calendar days (which means less pay) and additional pay cuts.  The district has until March 15 to send out pink slips, even if Josh doesn't receive one, we are still looking at another pay cut (which is way better than no job at all).  In the past, the special education department has been considered "safe" from pink slips, but this year they are adding about forty positions to be cut from the special education department alone.  Which makes Josh vulnerable to a pink slip.  Although he has been with the district a little over five years, we don't have a guarantee nor do we know for sure what is to come.
     The timing of it all is an added stress. Amaya's surgery is scheduled for the 6th of March, but the district has until the 15th of March to hand out a pink slip. We're left wondering, worrying and scrambling to decide the best course of action for us. Do we postpone the surgery? What if  Josh does receive a pink slip (our insurance could be cut halfway thru the lengthening)? There are so many uncertainties (will he receive a pink slip, will he actually be let go, will he be rehired)? There are so many unknowns; we don't want to make a hasty decision. The thought of postponing the surgery is stressful in itself; Dr. Nelson is usually booked three months in advance, so we would have to move the surgery date by at least three months.
    We are still trying to talk things thru and decide what's best for our family. We'll keep you posted. Thank you for your love, patience, support and encouragement.

Monday, February 20, 2012

Ugh

Okay so I've got some venting to do...
     I have a huge amount of emotions (about the upcoming surgery) that vary from fear to dread to pain. Sometimes the emotions are so intense and there are so many of them that it's hard to process them all. For the most part I have them handled, as best as possible. But as I sat on Amaya's bed holding her hand and waiting for her to fall asleep, I just couldn't help but cry. Just a wave of emotion came over me and I couldn't help but just feel it. I don't even think I can pinpoint what caused it, or what emotions were so overwhelming. Just something about Amaya sleeping so calmly and breathing so deeply, and holding my hand, that just overtook me. The sweetness of the moment, the knowledge of all that's to come...it was just too much. So I cried (we all need a good cry every once in awhile, don't we?). Then I came upstairs and cuddled Josh on the couch. He lightened the mood by teasing me, "you don't have to cry, it's not like I'm breaking up with you." I'm so glad I have him with me; to lighten the mood, keep me going, comfort me, and be a voice of reason. He reminded me of just how good we do have it, and how much worse it could be. I know he's right. And the logical part of me keeps my emotions in line. It's so hard to head into such a tough situation balancing emotions and logical reasoning. Preparing for a lengthening surgery is difficult, especially when it's for your child. It's a lot easier to look forward to a surgery, or want to "just get it over with" when it's for you, but when it's for your child, it's a totally different story. It's a whole different kind of pain and stress. And I'm not sure if there's a right way to prepare or to handle things. I'm just doing the best with what I have and who I am.
     The night before I was looking at a blog of a little boy who had a fixator on when he was three. I've visited this site many times and love reading all the posts; they're so helpful. But the night before Josh found a link on the site for pin site photos. I can't believe I've never found them. Looking at them made me feel queasy. They were all close ups and "graphic." Although I was thankful for the candid photos it was almost a little "too close to home." Some showed blood, pus, redness, etc. Seeing them made me feel so much empathy for that little boy and his family, then for Amaya and us. Ugh. Sometimes "ugh" just sums things up perfectly.
Thanks for letting me vent.

Sunday, February 19, 2012

The power of friendship

     Yesterday we took the girls to the park for a play date with Amaya's friend Mason. Amaya and Mason have been friends ever since they were little (about eighteen months old). Since then they have remained close. They went to the same preschool, were in the same class a couple of years, and shared many great times over the years. He is a sweet, kind soul, and she's lucky to have him as a friend.
     Over the last few weeks she has been missing him a great deal and asking to see him. When we did arrange the playdate, she was so excited and looked forward to it anxiously. Over the last couple of months, as her surgery date approaches, Amaya has had many nightmares (mostly about zombies). Thinking of Mason, and dreaming of him (Amaya dreamed that Mason would teach the zombies how to be kind) has helped her calm down and sleep through the night. I'm so grateful for this. I wonder if Mason or his parents will ever know what his friendship means to Amaya, and us. He is such a sweet, calm kid and brings out the best in Amaya. Just thinking of him, calms her. With her upcoming surgery and all the anxiety that it raises in her, she's going to need lots of calming energy. She's already talking about showing him her fixator after she gets out of the hospital. After her last surgery, she made sure to go to his house first so that he could be the first person to sign her cast. They made a "date" to go get yogurt before and after the surgery(something positive to look forward to).
     We had such a nice time talking with Shannon (his mom), joking, and watching the kids play. It's so nice having great friends to count on; truly one of life's greatest gifts. I don't know how else we could survive without such great friends in our lives and in our kids lives.

Here is Mason and Amaya when they were eighteen months old. Aren't those cheeks so cute?

The kids were running down a hill, Mason was ahead (he says he runs fast because he runs "half the speed of a cheetah"). Man he makes us laugh!

What a sweet picture!


Wednesday, February 15, 2012

Playing at the park

       I'm watching my girls as they play at the park. I'm enjoying their energy, joy and love for one another. And I wonder, will we be able to do this over the next few months? Will Amaya be able to play at a park with her fixator on? I'm not sure.  And as I'm wondering all this I hear a boy calling out to his dad, "Dad, get over here." The dad approaches then the boy says, "dad, look. One shoe is big and one is small. What's wrong with them. What's wrong with her?" The dad responds, " okay lets go." That's it, no explanation, they just get up and leave. Here was a perfect teachable moment, but instead of talking to his son, the dad shushed him and took the boy and his sister (who the girls were playing with) and left. 
      It's sad to me that people don't know how to respond to a child's curiosity or a disability. Why not tell the child that you don't know, but you could find out together? Why not ask yourself? Ugh. It's so frustrating, disappointing, and saddening. Luckily, the girls didn't  seem to mind much. But, they did ask what happened to their friend and why she had to leave so soon. 

     I wrote this yesterday as I watched the girls at the park. Later as I talked with Josh about it, he was sympathetic to the other parent. He said that the other parent was probably embarrassed and didn't know what else to do. Nevertheless, I wish it wasn't so. This situation has played out several times for us and I can't help but hope and wish that things would be different. For my girls sake, the sake of the other kids, and the sake of all the people they'll all meet in life.

Sunday, February 12, 2012

Love Party

     Last night we had Amaya's love party; it was a huge success. We thought of the love party about a month ago. As Amaya's lengthening surgery approached, Amaya began getting nervous and having some nightmares. So we thought that a party where friends and family could come and give her lots of love, hugs, kisses and support would be a great way to "send her off" and fill her with good, positive energy. Since Valentine's day was near we decided to call it a "Love party" which I think was a great way to celebrate and spread love. It was nice because once we planned the party Amaya now had something positive to look forward to.
     Our cousins Amanda and Mark graciously opened up their home to us (thanks again guys!). And lots of family volunteered to make food, buy drinks and help decorate. It was nice having lots of help in planning and making the event happen. It was such stress free party planning, thanks to all the help we received. Which was great, because the last thing we need right now is more stress.
     The past few weeks we've had very high temperatures, but the morning of the party we awoke to fog and it was drizzling down the hill. It reminded me of Alanis Morisset's song ironic, "it's like rain on your wedding day (or love party day)." We knew it would be a great day so we didn't let the weather bother us. When we got down the hill, it was cloudy but rain free, so we were a bit optimistic. We started setting up, while the girls bounced in the Star Wars bounce house(the girls are big Star Wars fans). Once the tables were decorated and we set out all the food, a few minutes later it began to rain, then pour. It was kind of funny, almost predictable. We quickly brought everything in then set up inside the house. About an hour later the weather broke, and the girls and some friends got to bounce again (a nice treat since they won't be able to for quite some time). The rain came back and then we just moved the party inside for the rest of the evening.
      As each guest arrived my heart filled with joy just a bit more and the smile on Amaya's face was priceless. We had family, co-workers, Amaya's teachers, and old friends. We greatly appreciate how far some friends traveled. Those who couldn't come sent their love by phone, text or Facebook, which was nice to add their well wishes to the day. As the house filled with people you could feel all the positive energy rise. The house was full of people who love us, want the best for us, and are rooting for us. It was great!
     Some people brought gifts, which we weren't expecting, but the girls loved! Today as they opened the gifts we were overwhelmed by people's generosity and thoughtfulness. Amaya received dresses, nightgowns, and skirts to wear over her fixator. She also got a mix of candies, paper, crayons, journals, color pencils, coloring books, clay, DVD's and stuffed animals. Lidie also got some treats which was nice too. Josh and I gave Amaya an American Journey girls doll (that looks like her auntie Gwen) and the set with a wheelchair, crutches, two casts, ace bandage, and ice pack. She loved it!
     My favorite gifts were the kind words that people wrote in cards and in two journals that we had (one for Amaya and one for Josh and me). I thought the journals would be a great reference point for us all to go back to during the next ten months when we need some hope, strength, and encouragement. Reading thru people's notes I was overwhelmed by the kindness, and amount of love and support we have by so many amazing people. We are so lucky to have so many people with us on this journey. We took pictures of our guests to print out and put into a photo album for us all to look back on as time passes.

Here's the girls modeling their Princess Leia hair before the party.

Here are the girls playing with cousins and friends in the living room. 
Thankfully we packed some bags of toys, paper and crayons for the kids.  

Amaya wearing the balloon hat that grandpa Steve made for her.

Here's the picture collage that we printed for friends and family to take home.

Here's Amaya with her new doll. The doll has her cast on and is sitting in the wheelchair.

Thursday, February 9, 2012

Talking with Amaya about fixators

     Today as I drove Amaya to school we talked a bit about her upcoming surgery. I was surprised by how calm she seemed. She had some questions and I tried to answer them as honestly as I could. She wondered about her fixator (What color will it be? How big is it? Will it work? Can she bend her knee with it on? Can she swim, walk or run with it on?). She also had questions about her hospital stay (How long will she have to stay in the hospital? Will Lidie be able to visit? Does she have to have an IV again? Who's going to stay with her?). And questions about the lengthening process itself (does she have to get x-rays?  How long will it take? Does she get to use a wheelchair again? How often does she get to do physical therapy? Will it hurt?). 
   There were a lot of questions and I was happy to answer them for her and try to help her understand what is in store for her. Her calmness and understanding made me happy. It's funny, her biggest concern was other people. "Will people stare at me?," "Will they ask me what it is?," "I don't want people starring at me." I explained that most people have never seen a fixator so they'll probably look and wonder what it is. But, usually once you explain what it is, and why its there people tend to "get over it." She accepted that, but added that people still stare at her shoe lift and she doesn't like that either.  This saddened me so much. There's nothing worse than knowing that your child has to go out into the world and deal with ignorant, rude, mean people. Even those that don't mean to be rude, don't quite know how to deal with something different. Over the past six years we've had people stare, point, whisper, ask "what's wrong with her?" or "what's wrong with her shoe?" even scold me. It got more intense after her last surgery and once she had her cast on. I can't imagine how much attention Amaya will attract with a fixator on. It's definitely not something I'm looking forward to (for her sake or mine). 
     Before I dropped her off to her classroom she asked if we could look at pictures of fixators after school. Of course I said yes, and that's exactly what we did. Before bed I showed her pictures from the Dr.Paley's limb lengthening page on Facebook, and several blogs (thanks again to the other parents who have posted blogs). The pictures were helpful and comforting to Amaya.  It's nice knowing that others have walked in the path that you will soon be on. When we saw a picture of a boy crying during his pin site cleaning, she was a bit worried, but we talked her thru it. And when she saw a boy's scars from where the pin sites were (I was so afraid this would freak her out or scare her) she was relieved that they were so small in comparison to her other scars. After awhile she asked to see her blog (she seemed surprised and happy that so many people have read her blog, so thank you all for reading!)

     
My little ham asked, "Mom, can you take my picture for my blog?"

     And as I rubbed her leg and waited for her to go to sleep, she said "Mom, tonight I'm going to dream about the other PFFD kids."

Monday, February 6, 2012

Limb lengthening surgery

     Amaya's lengthening surgery is one month away. Here's some information on her upcoming surgery. Limb lengthening is a four part process. It works by gradually growing new bone and soft tissues (skin, muscle, nerves, blood vessels, etc.). This is called tissue regeneration. Bones are a living substance and when the ends are pulled apart new bone grows in between. It is sometimes referred to as a four month surgery because the process of lengthening takes about four months.
Here are the four parts-
1. Surgery- This is when Dr. Nelson will break her bone (usually in two places) and attach an external fixator. She should be in the hospital about three days. In addition to that he will also correct her hip (the muscles and tendons in her hip) and realign her femur.
2. Distraction Phase- This is the phase where the bones are pulled apart. This begins a few days post surgery (this allows any inflammation in the bone to go down). Josh and I will have to do several manual turns on her fixator each day (they will give us a tool). The rate of growth is 1mm per day and the preferred rate of turns is four times a day. This may be adjusted (slower or faster) depending on how Amaya's  bone and soft tissues are tolerating the growth. During the day we can expect Amaya to have little pain and at night more aches and some difficulty sleeping (each patient responds differently, so we'll have to see how she does). Physical therapy is key during this phase because it helps stretch the muscles to help them grow and help maintain joint flexibility. Amaya will have hour long physical therapy sessions every day (Monday thru Friday we will take her to the physical therapy office and on the weekends we will do the exercises with her at home). During this phase weight bearing is allowed partially or completely, as tolerated. She might use a wheelchair or walker when she's tired. Amaya will go in every two weeks for x-rays and be evaluated (they will check her bone growth, nerve and muscle function, pin sites and monitor and prevent complications). 
3. Consolidation Phase- At this point lengthening stops and the bone is very weak. During this phase the fixator remains on (usually one month per cm of bone growth gained; were hoping Amaya will gain eight cm, so that means a possible eight months for the bone to heal) to help stabilize and give support to her leg. During the distraction and consolidation phases we have to do daily pin site cleaning to prevent infections. Pin sites are the sites where the pins enter Amaya's skin (there are usually about ten pins). Pin site cleaning is usually quite painful.
4. Removal of fixator- This is usually an outpatient surgery. Sometimes a cast is put on for added protection (usually for an additional month).
     I got this information from Dr. Paley's websites.  If you want to read more about the limb lengthening procedure, any other procedures, or PFFD you can visit Dr. Paley's sites at www.limblengtheningdoc.org or www.paleyinstitute.org  If you haven't visited his sites yet, I highly recommend it, especially if you're a parent or a patient. He has several videos and articles about lengthening and PFFD on his sites.

Saturday, February 4, 2012

Breathing techniques

     As Amaya's surgery date nears we've been trying to help calm her nerves (she's still having nightmares). My mother in law recommended that we meet with a friend of hers, Amy Wheeler. Amy is a teacher at a local university. Amy teaches, yoga, nutrition, health, and stress management. Amy agreed to come to our house today and show us some breathing techniques. Amy was kind, warm and the girls really enjoyed having her over.
      Amy suggested that Josh and I do some exercise (the kind that gets you sweating) because its a great way for the body to release stress. She reminded us that Amaya will pick up any of our stress or nerves and feed off of them. We're already aware of that, and have seen it happen in both positive and negative ways. Luckily we have a lake really close to us, that we can walk around for exercise. She said that the breathing techniques not only help with stress management, but with pain management as well. When you inhale your body activates the "fight or flight" reflex, but when you exhale your body releases.
     She taught the girls some breathing techniques. She had the girls breathe in and then exhale into a straw (that was in a bowl of water). They tried to see who could blow bubbles the longest. Amaya did great! She was able to exhale for over almost twenty seconds. Amy recommended that Amaya practice this kind of breathing three times a day (ten breaths each time). She said if you consistently work at it you can retrain your breathing, so that your body is always breathing in a calm manner. She said that this will help Amaya deal with the pain that she'll have after her surgery. Another easy exercise to try is to have the girls blow bubbles thru a bubble wand.
     Amy also taught us another technique to do at bedtime. While we massage Amaya we have her exhale slowly.  While we massage her arms, torso, and legs she exhales slowly. When we do the front and back, that adds up to ten exhales. Josh practiced on Amaya and I practiced on Lidie. It was so easy, yet effective. The best part is that it's something that can easily be added to our daily routine. I'm glad that Amy came and I look forward to seeing how these techniques will help us all deal with stress and help Amaya deal with pain.
     Amy was pleased with how the girls did, and suggested we keep up the exercises. She said that this type of breathing is level one. The next level would be to inhale and exhale thru the nose entirely.

Here's Amy with the the girls blowing bubbles into their bowl of water. 

Lidie "cheated" by inhaling more than once per exhale. Glad I caught her smiling. 

     I'll keep you posted on how we're  doing with the breathing exercises and how they benefit us, especially Amaya. Thanks again Amy for coming and sharing your knowledge with us and Elaine for arranging it all.