amaya at lake

amaya at lake

Sunday, August 25, 2013

Recovered and ready for a fresh start

       Well its been a week and a half since Amaya's surgery. I'm happy to report we're all doing well and life is back to normal. Those first few days were exhausting for us all.  We couldn't believe how tired and worn out we all felt. Thankfully, Amaya recovered quickly and her pain was managed early on. By Tuesday she didn't need Tylenol for pain anymore. She's able to walk, run, jump, play, sleep and even bowl without any pain or discomfort.
    The girls start school this Tuesday. Lidie begins transitional kindergarten and Amaya starts second grade. This will be Amaya's first school year without any scheduled surgeries! We're looking forward to a new year, new start and a break from surgeries.
      Thanks again for all your love, kindness and support.
Isn't this the coolest monster you've ever seen? It was in a care package from Rory and her family. We received some sweet cards, pictures and treats that helped the girls feel loved and extra special. Thank you all for all the love, thoughts, calls, prayers, and messages. We're grateful for all your love and support.
Amaya used one of the flowers she received to play with. She pretended she was the flower and she was sleeping in recovery.
Here's what Amaya's hip looked like before her shower on Tuesday. From previous surgeries we've learned to not force the bandage removal. We had her shower like normal, but didn't touch the bandage at all.
Amaya's hip started to get itchy then the gauze started to peel off on its own. By Thursday the gauze came off on its own. Here's what her incision looked like. Amaya was surprised and happy to see how small the incision was. 
Here's what her hip looks like now. There's still a small bruise on the outside, but her incision looks great! And the bruise doesn't hurt her at all.
Here are our two lovelies.

Friday, August 16, 2013

The rod is out!

    Its the morning after Amaya's rod removal surgery. We're still a bit tired and recovering. Amaya is a bit sore and has some slight discomfort, but she's doing fantastic! She's walked quite a bit and said it feels good. She seems to feel the most pain when she sits or lays and puts pressure on her hip. At bedtime last night she had quite a bit of pain. After a hot pad, some children's Tylenol she got some relief. But she wasn't able to fall asleep on her back because her hip hurt. I had her turn on her right side while I rubbed her back then soon after she fell asleep. She continued to moaned for a bit more, but was able to sleep through the night without anymore Tylenol.
   Here's a recap of yesterday.
     I woke up at two am with Lidie. For a half hour melt down, then again at six am. I was tired. I hoped Amaya would sleep in, but she woke up at seven thirty. Lidie realized it was surgery day and she was upset. She didn't want to go anywhere with anyone. She begged us to bring her along. She even asked to stay in the parking lot waiting for Amaya. "Please, mom! I don't care how long! I'll wait for her." It was heartbreaking. Surgery days are just as tough for the siblings, if not more. We tried to keep Lidie distracted, entertained and calm.
    While we waited for our check in time Amaya saw a commercial for a trampoline bounce play place. She got so excited and said she couldn't wait to be able to go. She started to realize just how pain free she would be once the rod came out. Josh had asked her if she thought she'd be able to feel the difference when the rod was out. Very confidently she said yes. Its been such a bother for her these past few months.
    Amaya had six ounces of apple juice two hours before our check in time. The surgery center called us and let us know Dr. Nelson was running ahead of schedule and asked if we wanted to come in early. But since Amaya had finished her juice not too long ago they told us to stick to our original time.
   As we loaded up to leave Amaya told Lidie, "I'm sad for you." Lidie responded with, "I'm more sad for you." It was sweet to see these girls who can sometimes drive each other crazy with their sibling rivalry be  empathetic to one another. We went to drop off Lidie at her grandparents house, but when we got there she didn't want to get out of the car. Dad carried her out, car seat and all. that seemed to lighten the mod for her, but only added to my concern for her. For four years old she had to show a great deal of strength, courage and bravery. My heart ached for her all day. Before I left I make sure to kiss her palm (like in the Kissing Hand) which helped comfort her and I both.
   On the drive down Amaya kept telling us how hungry she was. Josh hadn't eaten anything either to show her some support and solidarity. I had only eaten at 6:30 some cream of wheat with Lidie and was getting thirsty and hungry too. As we drove Josh told me that he was feeling calm. He said knowing Dr. Nelson would be in charge today gave him confidence. Confidence in your doctor is huge! Amaya played with an iPad on the drive down and kept herself pretty distracted. Occasionally she'd look up and ask, "are we there, yet?"
    When we approached the surgery center I felt calm and comforted. Knowing we had the help and support of so many family and friends and that we had Dr. Nelson looking out for Amaya soothed my soul. It was kind of strange to be so calm at that moment. I'm usually full of butterflies in my stomach. But, not that time.
    Amaya was calm as we checked in, registered, filled out paper work, and had her vitals taken. She started to get a bit nervous when they attached the round tape things that they use to measure her heart during surgery. They usually attach those after shes asleep and she doesn't see it, so she was a bit thrown off. As the nurse left Amaya changed into her gown. She may or may not have stood on the bed. And she may of may not have jumped up on the bed once. But, only by dads suggestion. After she was dressed she said, "I feel awkward." We weren't sure what she meant by that. We waited over an hour for the surgery to start. While we did she played on the iPad, played with us, and talked. She did great! She was calm and kind.
    We met with the resident first. He looked at her hip and said he could feel the rod. He said that since it was so predominant it might only take about five minutes to remove the rod. He said it would be about an hour for the whole procedure. We signed release forms and then he wrote on her leg. After he left Amaya got a bit more nervous. "I feel icky. My left side and arm feel weird." She said. At almost one o'clock we were still waiting for the anesthesiologist. We were hungry! I rubbed Amaya's feet and tried to stay calm. I worried about her femur. What if the femur cracked when the rod was removed? What if there was a complication? And worse off what if the femur brakes and we lose some of the lengthening we gained? I worried for Lidie and Amaya both at the same time.
    After waiting for almost a couple hours things started to go quickly. Almost a little too quickly. The anesthesiologist came and talked to Amaya. She talked her through what would happen. Then a nurse came to talk to us. Then Dr. Nelson came over to talk to us too. He was kind and reassured Amaya that things would be fine. He asked Amaya about her summer. We asked if she could keep the rod. He smiled and said sure. The nurse asked what Amaya would do with it. "Add it to her collection." I said. Amaya told her she already had a fixator at home. Dr. Nelson smiled then gave me a hug then left. His hug comforted me because I know he cares for Amaya and would take good care of her. Quickly another anesthesiologist came and told us it was time for "hugs and kisses." I kissed Amaya, told her I loved her and would be waiting for her. As they wheeled her away, she turned back with teary eyes. Ugh, my heart broke. Seriously, that pain is only equal to a broken heart, or when you hear someone you know has died. The moment they wheel her away is always hard for Josh and I.  But this time, since she did look back, and had pain in her eyes. I had a hard time recovering. I knew she left pain and fear. And I was powerless to do anything. Last night before bed she told us how scared and confused she was. Usually she drinks some "pink stuff" to help her forget and calm down. But I think since it was such a short surgery they didn't give it to her. Walking out ot the waiting area was hard. I had to stop in a hall first to cry and pull my self together.
   We waited for forty-six minutes but it felt much longer. Time passes strangely when you're waiting for a surgery to be over. I had no clue what time it was. I knew Amaya would be fine, was in good hands and had kind souls looking after her, but it was still hard to wait. At two o'clock I was tired, hungry and exhausted emotionally and mentally. Its exhausting worrying about both girls. When they called us to go back into recovery Amaya was very emotional. She was confused and sad. The first thing she said ti me was " I love you mom." She said she felt like she was in a dream, that she was worried about us. We tried to calm her and soother her. She was sore. As soon as she drank some juice the nurse was able to give her some more pain medication. Dr. Nelson came in to check in on her. He said she did great. I asked about the femur and he said its just like the right one. That was great news! He left to give her time to recover.
    Amaya started to be more like herself within a few minutes. She drank juice, had a Popsicle, and some bites of a saltine. She continued to tell us how much she loved us and missed us. It was so sweet. I just wanted to pick her up. She asked to look at her hip, and when we showed it to her she was pleasantly surprised to see a small piece of gauze. Once she got her pain medications eh started ot feel better. She continued to be sweet and polite to the nurse the entire time, even when she wasn't feeling well. After a few minutes the nurse said that if shes feeling good she can be released in half an hour. I was surprised how quickly she recovered from the anesthesia and was able to go home. She had no problem getting dressed or hopping ot her wheelchair, with the nurses help. We had a very kind nurse named Kim. Her mom and I work together. It was nice having someone who knew of us be prepared to help us.
     Before we left the female resident came in with some flowers and a card from Dr. Nelson. Wow! What a sweet gift. This is the end of a phase of our journey with him. One that has left Amaya with a stable knee, hip, and two feet firmly planted on the ground! We've been so fortunate to have Dr. Nelson leading our way. He's been amazing. Seriously, amazing! We get a couple years off from surgeries then we'll be working with him again to lengthen her femur the rest of the way. The resident was kind and encouraged Amaya to continue with her dream to be a surgeon. She told her there aren't many girl doctors out there, so to never give up.
    We hit some traffic on the way home so it took us a little over an hour to get home. The last few minutes Amaya was very ready to be home! She got comfy on the couch with her pillow pet her friend Caelan gave her. Later she had some cake her Tia Lacy and Grammy brought her. She was asleep by nine pm and I followed shortly there after. Our long draining day came to an end.
   We've made it thorough four surgeries in three years time. We've survived! Amaya is very lucky to have a wonderful doctor, loving family and friends by her side. Thank you all.
Carrying Lidie into her grandparents house.
Me and Amaya in the lobby.
Getting her pulse read, and blood pressure taken. She started to get a little nervous here.
Having her heart checked.
Waiting with Teddy. She got to take him into the surgery room with her yesterday. 
That was kind of cool.
Her face after beating me at tic tac toe again.
Waiting with dad.
Amaya and dad holding hands. 
The leg is marked and ready to go.
Amaya smelling her mask. The anesthesiologist made it smell like bubble gum for her.
A screen shot of my phone the second they called us back to see Amaya. You should see us move when they call us back! We move so quickly.
Our first look at her. Aww. Her eyes were so red and puffy from all the crying she was doing.
The first look at her rod.
Heading home!
Lidie checking out Amaya's leg.
Some of Amaya's goodies.
Here's what her hip looks like. The bruise kind of scared her until I showed her the picture and she noticed how "small it is."She can't get it wet if for five days. She's happy because that means no showers or baths. Then after that the bandage will start to come off. She had that clear tape stuff with her knee surgery too. 
Here's a look at the rod. It's next to a ruler and measures twelve inches.
Amaya's flowers and card from Dr. Nelson. She was pleasantly surprised to see them. So were we.
First attempt at walking just a half hour after getting home.

Wednesday, August 14, 2013

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. 

Monday, August 5, 2013

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.