Heading into our fourth surgery

     Tomorrow Amaya will have her fourth surgery in three years. Of the four this will be the easiest and quickest one. But as she's gotten older this one has worried her the most and put added stress and worry onto our shoulders. After all, as her parents we want to spare her any unnecessary pain or stress. And although the surgery was unavoidable the stress was, or we hoped it was. The past few weeks Amaya has had a countdown to the surgery. It's added stress and worry to her plate. With the previous surgeries she knew they were coming but didn't have a time reference for when exactly they would be. And since she didn't, she didn't worry about them. Also the pain and discomfort associated with the other surgeries gave her something extra to worry about for this one. She was full of questions and wonder. Would it hurt as much? Would she stay in the hospital? If so, for how long? She was full of a mix of questions and knowledge. She knew what to expect: some pain and discomfort, a much dreaded IV, the groggy yucky feeling after anesthesia, etc. This past Saturday I heard her moaning in bed. When I went in she was in tears. She explained all her fears for this upcoming surgery to me. Fighting back tears I explained to her what would happen. I talked her through moment by moment what to expect and how this one would be different from the rest. I showed her the scar from where the rod was put in and reminded her that that's where it will come out from. The scar is about an inch long. Its small size seemed to comfort her a bit. After a few minutes she recuperated and moved on (easier than I did). But, it was a very rough way to start the day.
     We kept the weekend and the start of this week busy and fun for the girls hoping to distract Amaya as much as possible. But at the end of each day she let us know just how many days were left before her surgery, "four more days," "it's in less than a week," "one more day, etc." Saturday we went to the beach with friends and camped over night. On Sunday the girls boogie boarded and tried surfing for the first time. Monday and Tuesday the girls played with their cousins. Today I got off work early to spend extra time with the girls. We went to see Planes where I happily received cuddles from both girls, then we had ice cream, got the mail (they were hoping Ghostbusters arrived in the mail). And it did! Then we all had yummy food, watched Ghostbusters, played, made a late night run for Slurpee's, then gave both girls showers. Amaya said, "This is a really fun day! Thank for making me special." It's been a fun, relaxing afternoon. I reminded the girls that school starts in two weeks for them. Amaya said that she's more nervous about that than her surgery now. I was pleasantly surprised. She said that now "I just want to get it over with. My hip won't hurt anymore, so it'll help me. And after this I get a break from surgeries for a couple years." Wow, I can't tell you how happy I was to hear that. After so much worry, pain and heartache I was happy to hear her say that.      
     We're letting her stay up late tonight eating as much as she wants so that she can sleep in tomorrow and not be so hungry in the morning. Our check in time is set for 11:30, but we still have to register, meet with the anesthesiologist and get her ready. So that should take at least an hour.
     When I was taking Lidie down to get ready for bed she said "I have to be all alone tomorrow. I don't get to be with you or dad or Amaya." Surgery days are hard for each of us both individually and as a family. Sometimes I think Lidie has it worst, because she's away from us and has to deal with things alone. I reminded her that the rod removal should be quick in comparison to the previous surgeries and that Amaya won't be staying overnight. She was happy and a bit comforted but as I tucked her in, she asked if I could sleep in her bed tonight so that she wouldn't be alone tonight too. My sweet girl, I'll be cuddling her all night. And Josh will be cuddling Amaya.
      Thank you all for your emails, calls, texts, gifts and support. They mean so much to us. I'm left speechless and teary eyed thinking of all the love and support we receive. Thank you.

Amaya got a pillow pet and card form a "fixator friend" Caelan. She loves it! She's going to bring it along tomorrow to cushion her hip especially on her way home.

Cuddling with Lidie at the beach.

Josh and the girls at San Elijio.

Our little surfer.

Lidie stood while Josh helped her balance.

Amaya loved surfing. It was her first attempt and she got up four times! 

Our sweet girls. These sisters love each other. Each is worried about the other for tomorrow. 

The girls excitedly opening their mail.

Enjoying her ritual, a Big Mac before surgery day. Josh substituted the meat for a veggie patty.

A sweet picture Amaya's cousins Daniel, Lilly, and Bobby sent her. Thanks tia Lore and uncle Robert. 

Chocolate pudding

    Saturday night when Josh was helping Amaya to go to bed she started talking to him about her fears about her upcoming surgery. She told him about the stuff she's afraid of, dreading and the bad things about it. Josh talked her through it all. I was asleep with Lidie in her room. She caught a cold that day and woke me up very early. And I wanted to help her have a good night and give her her inhaler as needed throughout the night. So I was asleep when Josh and Amaya talked, but was glad that she opened up to him and he was there to talk her through it all.
    Amaya told Josh that she's really dreading the IV. She's never been a fan of them. By now she knows what they will feel like and what to expect, but that doesn't seem to calm her nerves. Amaya told Josh that she's afraid and about how bad it was to have another surgery. He helped her remember all the good things she has and all the good about her situation. For example that her surgeries have all been successful, that she hasn't had any major complications, that she's made new friends, that she's got such a great surgeon, etc. He also reminded her to talk to him or I when she has those thoughts so that she doesn't hold them inside. So far she's doing good with that. But, we've noticed that she's being a bit sassy with us and with Lidie. Josh reminded her that when she's stressed she tends to take it out on people, but it isn't fair. Especially to Lidie who doesn't quite understand all that yet and who also has stress and fear with each surgery. Josh had Amaya think of a treat to enjoy in the mean time to keep her distracted and thinking positively. She chose chocolate pudding cups. That makes me smile.
    Yesterday we went out and bought some chocolate pudding. And first thing this morning I caught her sneaking a cup. She had already had some toast, so I didn't scold her. Rather just reminded her that they're hers to enjoy and share with her sister. We got some to share, but Amaya thinks we might be needing more.
   I've also been dealing with a bit of stress and emotions with the upcoming surgery. I called last week to follow up with the referral to make sure that everything was in place for the fifteenth. As of Friday the paper work hasn't been submitted to Amaya's primary doctor or processed. I'll be following up on that this week to make sure its all taken care of. Wish me luck with all the referral, calls, emails and paperwork. Thank goodness we have Marilou on our side, she's been working to help track down the paper work and get it taken care of. I also feel a lot of pain and sadness; seeing Amaya dealing with fear and pain is heartbreaking. That's one of the reasons I decided to write this post today; to vent out my feelings and process it all in my own way. Sharing it with family and friends who care about us helps comfort me. So thank you all. Thank you for your continued support, love, kind words, and messages. They mean the world to us.

What's today?

     Today we went to Los Angeles for some fun. Just trying to squeeze in one more day of fun before Josh has to return to work on Thursday. We've really been enjoying our summer. Spending time with family, a family reunion, meeting new PFFD families, going to the beach, play dates, the PossAbilities swim party, museums, movies, a local zoo and swimming lessons. Today we finally got to go to the LACMA museum in Los Angeles. Then we headed over to the Farmer's Market for some sweet treats. The girls asked to ride the trolley so we did that too. In the middle of the day, out of nowhere Amaya asked, "wait, what's today?""Tuesday, July 30th," I said. She looked at me, with a look that's hard to describe, and said, "ah, two more weeks until my surgery. I hate surgeries."Josh picked her up, consoled her, comforted her, and talked her through it. 

     But that look, and her question still sits with me. I'm not so much bothered by her comment that she "hates surgeries." I mean, does anyone like surgeries? Except for maybe surgeons. I don't blame her for hating surgeries or dreading having to have another one. But, what bothers me is that she knew exactly how much longer until her surgery. She knows when it is, and seems to be thinking about it, counting down to it, and worrying about it. Possibly even dreading it. It breaks my heart to think that she has all this worry, anxiety, fear, feeling of dread on her almost eight year old shoulders. Ugh. And even though she seems to be handling it all quite well, my aching heart can't help but wish that I could take these fears and worries away. It seems no matter how much we try to explain to her that this is an "easy" surgery, and not a big deal, etc. she still wishes she didn't have to have one more surgery. Bottom line is that a surgery is still a surgery, no matter how small or easy it is. Even though its a simpler procedure, with only an out patient stay, and a quicker recovery it seems the feelings leading up to it are all the same. For her and for our family. Even Lidie has expressed some concern for Amaya and her upcoming surgery. Lidie loves her sister and often tells us that she wished she would have the "short leg and fixator, not Amaya." 

So please keep my girls in your thoughts. Send them calming thoughts these next two weeks. Thanks again for your care and concern.

The girls hugging at Seal Beach after a fun day of playing. And in case you're wondering no they're not wearing lipstick, its just the filter on the camera.     

 

Josh took this today of Amaya and me holding hands. It makes me smile just to look at it.

Here's the water slide at the Drayson Center where the PossAbilities swim party took place. The swim party marked the one year anniversary since Amaya has been a member of PossAbilites. We've benefited so much from their programs.

This year Amaya decided she wanted to try the water slide. She loved it! It didn't bother her hip (I was worried the whole time) so she slid many times!

Here she goes.

 Look at that smile. 

Here's sweet Lidie enjoying her first pool party since learning how to swim. She decided to save the water slide until next year.  

Look at her go. 

She slid down so fast!

Rod Removal

      Yesterday morning we had an appointment with Dr. Nelson. We were very excited for the appointment. Its been over a month since Amaya's hip started bothering her. The appointment almost didn't happen. Josh's school district changed their insurance companies this year so as of July first we had a new carrier. Even though we had the appointment set for months I knew we wouldn't be seen without insurance referrals in place. So on the first I made some calls to our wonderful referral coordinator, Marilou. Marilou was helpful and rushed the referrals so that everything would be in place for our appointment. She even emailed me a copy of the fax she sent over and of the referral in case we had any problems. On Wednesday, the day before the appointment, I got a call telling me that since Amaya had no insurance or referral her appointment would have to be rescheduled until mid August. I was devastated. I fought back tears and curse words. I inhaled deeply then explained that this wasn't a normal appointment that could be postponed, but that my daughter was in pain and discomfort because of the rod sticking out of her femur. I talked with three different ladies for forty five minutes. They were sympathetic and helpful. Thanks to Marilou's email they were able to track down the fax and process it immediately. The referral center receives thousands of faxes per day, but since I knew the exact day and time the fax was sent they were able to track it down and process it. I thanked Amanda and Lina for all their help. No words could express how relieved, happy and grateful I was. I also called Marilou to thank her for her emails as without them we would be waiting another month to be seen. Referrals can often take you on a roller coaster ride of emotions: desperation, frustration, fear, sadness, anger, hope, joy, gratefulness. It's exhausting, but rewarding.
      The appointment was great. We had two new residents work with us. One was a female and she was excited when we mentioned that Amaya wants to be an orthopedic surgeon herself. She was kind and encouraged Amaya to never give up on her dream. While the residents looked at Amaya's x-rays they took measurements of her leg lengths (there's only about a 1 cm difference between both legs right now), the angles in her knees, etc. The residents seemed interested and happy with Amaya's x-rays. When Dr. Nelson came in he looked at her x-rays and said since her femur looks good we'll schedule the rod removal. He was happy with how well her femur has healed. He was kind and told the residents that the lengthening "was a team effort." I appreciated the time he took to show Amaya what and how he would remove the rod. His kindness helped calm her nerves. He said its an easy out patient procedure.
    Once the rod was taken care of I asked about the next lengthening. Dr. Nelson said that the soonest he could put in the internal lengthening device would be when Amaya is ten years old. He said he'll watch her as she grows. Then as her discrepancy continues to show we can decide when to do the lengthening. He said that the femur grows about one centimeter a year and that her next big growth spurt should be between the age of ten to twelve. So, we'll have about three to five years without any surgeries. I could barely believe my ears. No surgeries?! In the past two years Amaya has had three surgeries (four counting the upcoming rod removal). It's hard to imagine life without a surgery, or upcoming surgery, or recovering from a surgery. But, I am very much looking forward to that. Life without surgeries sounds wonderful. I don't want to sound too dramatic, after all four isn't very many. But, then I realize that I know many people who have never had four surgeries in their entire lives, yet she's had four in her seven and a half years of life. And she's been such a trooper too!
    Before we left we got our surgery date scheduled. On August 15 the rush rod will be removed. Its nice to have a date: knowing the pain will soon be over. I was happy that Amaya will have two weeks to recover before school starts. She was happy that she will have a month to recover before her eight birthday.
   Thanks for all your care and concern. Keep Amaya in your thoughts and prayers, she's still in discomfort and nervous about having another surgery (she's dreading the IV).  I'm a little worried about the rod being taken out: just lots of "what ifs" running through my mind.

Being silly while waiting in an exam room. 

Here's a close up of Amaya's hip.

Here's a full leg length view.

Here's a short video of a trick Amaya taught herself on our family trip this summer. Even though the rod is bothersome and at times painful, she doesn't let it slow her down or stop her from enjoying life.

Orthopaedic Open House

    This Sunday was the open house for the new orthopaedic office. They recently moved to a bigger location a few blocks down from the old office. We went to show our support, and tour the new facility. Plus its also nice for the girls to go there when there wasn't a regular appointment. During the tour we got to see the 2D and 3D x-ray machine. They told us that its pretty cutting edge technology. In fact there are only twenty-two of those machines in the United states, three of which are in California. After the machine scans the body it makes a 3D model for the doctor to better look at and analyze. It's pretty amazing. Another great benefit is that this machine uses ten percent less radiation than other x-ray machines. Which is great, especially for Amaya who will have countless x-rays in her lifetime. We're so fortunate that Amaya is getting such quality care. I'm grateful that she goes to Loma Linda and is under Dr. Nelson's care.
     While we were there we saw Dr. Nelson and got to meet his wife and one of his sons. He was nice enough to look at Amaya's hip for us and said that he would remove her rod this summer. He said that sometimes the rods start to come out and that it wasn't a big deal. We let him know we have an appointment in July to see him. I'm sure at that appointment we can proceed with the scheduling of the removal. I'm hoping it will happen before she starts school in August. Just so that she can go one school year without a surgery. But, it is what it is, and it will happen when it happens so I'm not going to stress over it, at least that's my plan. I'm glad he's seen her, he's not worried, its not a big problem and it will get fixed.
    Amaya was a little surprised that Dr. Nelson said he would remove it this summer. It was a lot sooner than she thought. Amaya is already getting nervous and worried about the removal. Because she knows it is a "surgery." The one thing she's really dreading is the IV. I can't say that I blame her, but we are reminding her that this is probably going to be one of the easiest surgeries she'll ever have, and that the recovery should be pretty easy. In comparison to the lengthening, this should be so easy. At this point, we've told her to not worry about it for now, to enjoy the time before we actually have to have it removed. Trying to keep her from worrying and comfortable are our main focuses right now. With a hot pad, and by taping her hip she seems to be doing well with pain.
  Thanks again for your care and concern. If you can keep our friend Ben in Washington in your thoughts and prayers we'd appreciate it. He's recovering from a pretty painful surgery this week to treat his PFFD. We have two other PFFD friends Rebbecca and Lily who are having surgeries this week as well. Any love, prayer and good thoughts you send their way are appreciated.

Here's Amaya in the new x-ray machine.

It's the rod

   Yesterday I got a call from Dr. Nelson's nurse. She apologized for taking so long to get back to us. She was having trouble with her voicemail. But she got us an appointment to go in and see another doctor this morning. We had an early morning and had to leave by seven thirty to make it in time. I was tired as I was getting the girls snacks and lunches packed that when I went to pour myself a freshly brewed cup of coffee I realized that I had forgotten to put coffee in the machine.
   At the appointment they had new x-rays taken of Amaya's hip and legs. They did the full scan that Dr. Nelson had requested for the next appointment. It was a new machine that took a 3D scan. First we saw a resident and then a doctor. The resident told me that the rod can turn, that it doesn't have a screw in there to hold it in place, and that he didn't see any breaks or fractures by the rod. He said that the rod may be hitting her bones and that would explain the "pop" sensation she's having. Both the resident and the doctor said that the rod has moved. The doctor pointed out that there's a "halo" (a dark shadow next to the rod) at the bottom of her leg. He said that shows the rod has moved. He also pointed out that in the x-rays from January the rod was flush with the top of her femur, but this time it was above it. It looks to be about an inch above it to me. He said that it isn't a major complication and that we shouldn't worry too much. He said that we need to keep an eye on it and follow up in three months. He said that it may continue to move up. He said that when it comes up to the surface it should be removed. But said that when we come in to see Dr. Nelson in July he will decide whether we should keep it in or remove it. He said that if it has to be removed its a pretty easy procedure; they just make a small incision and pull it out. He said that her bone looks so good that he feels it would be able to withstand the removal now. He did a full exam of her legs and said that she has recovered so nicely from her lengthening. He said that the knee pain that she's feeling maybe from the hip; that its sometimes experienced in the knee even though the source is the hip. He said she can continue with her activity because it will continue to strengthen the femur.
    It was reassuring to know it wasn't a big problem, but not very comforting knowing she will continue to deal with the pain. At school today she's already asked for Tylenol and gone in to see Josh because of pain (she's only been there three hours). We had removed the tape on her hip so they could examine her hip and incision well. It seems to help relieve the pain so we will re-tape it this afternoon.
   Thanks again for all your care, concern, advice and help. Its nice knowing we have so many who care about Amaya and our family. Thank you.

Here she is getting her x-ray on the new scanning machine. You can actually see the green line going down doing the scan. 

Here's the full leg x-ray. If you look close you can see the "halo" by the rod. And you can see how well her femur has healed. The 3.1 inches of new bone is healing and filling in "nicely."

Here's a close up of the hip. Here you can see how high up the rod is.

Some progress with her hip

    First of all let me thank you for your care, concern, calls and messages. I really appreciate it. Its nice to know we have so many people out there who care about Amaya and her well being. She's still having some discomfort and pain. She feels her hip "pop" throughout the day; at times when she's running other times when she's sitting and moves. Her hip is sensitive when you push on it, even slightly. She's been sleeping with a pillow under her hip to help with pain, taking children's Tylenol and sleeping with a hot pad. She said she's been waking up when she feels pain and or a "pop." Last night she woke me up twice; once to get her a hot pad and another time to get her some Tylenol for pain. 

   Although she does have some pain and discomfort it isn't all the time. It goes away and she's not allowing it to limit her. She's still playing, swimming, and enjoying life. We talked to her P.E. teacher and she'll sit out for the next few weeks until we hear from her doctor. Also we've decided its best to have her skip her gymnastics class for the next few weeks as well. Better safe than sorry. 

   After many calls and lots of help we finally got an insurance referral in place and an appointment to see her surgeon. Unfortunately it isn't until mid July. That's about six weeks away and a very long time for her to be in pain so I've made some calls to Dr.Nelson's nurse to see if we could see him before then. Currently he is out of the country for two weeks. He travels about four to five times a year to do mission work. He's an amazing surgeon and person and I'm sure he's helping many people wherever he is. We wish him well. 

   I'll be picking up Amaya's x-rays today (the ones we got at urgent care last week) and then emailing Dr. Nelson. He's usually really good about answering us quickly, even while out of the country. Hopefully he can give us some input, advice and let us know what to do in the mean time. Until then we're trying to keep Amaya comfortable and trying not to get too stressed out. This is much easier for Josh than for me. It's hard not to worry and wonder. I find myself looking over all her past x-rays comparing them to the most recent ones and searching all over the Internet looking at other x-rays and reading medical journals trying to get some answers. Today Josh's mom came over before school and taped Amaya's hip and knee hoping that that would give her some pain relief. Hopefully it does. 

   Once again, thank you. 

Amaya sporting her new Goonies shirt while her Grammy tapes her hip.