Preparing for Hayden’s 1st Lengthening
Hayden and I made the trip to Florida for her pre-surgery visit with Dr. Paley this past May. It was quite the trip. We ended up in the ER the night before our appointment with Paley and discovered Hayden had a horrible case of “hand foot and mouth”….ugh. Poor baby was MISERABLE to say the least. After waiting in the ER all night we made it back to the Quantum house only to stay up the remainder of the morning with one unhappy sick little girl. Due to the risk of exposing the other children to Hayden we had to check out of the Quantum house and I quickly found a hotel to check into before our appointment with Dr. Paley. All of this with a sick little girl and our first time traveling without Shawn. It made me even more thankful that Shawn will be able to stay with us in Florida for the 4 months we will be there for her lengthening. Thankfully the appointment with Dr. Paley went really well. I think we only had to wait for about 1 ½ hours which is really good if you have ever had an appointment with him before. I found a couch in a back hall way so we wouldn’t expose any of the other kids to getting sick and Hayden slept the entire time. They took x-rays so that Dr. Paley could see how her hip had heeled from her last surgery in February. He could not have been more pleased with how the hip looked. I of course brought in a page of questions and a digital recorder so that Shawn could listen in once we got home. The surgery is set for September 25th.
I cannot believe that it is only 2 months away. This summer has gone by way to fast. We will be making a 2 day drive to Orlando. Shawn and I want to treat Hayden to a fun and magical couple days before her surgery. I don’t think there is a more magical place than Disney World. We hope to pack a lot of amazing memories in before Hayden has to embark on this difficult journey. We will be in Disney Friday and Saturday, drive into West Palm Beach on Sunday, pre-op appointment Monday, and Surgery will be Tuesday. We had originally planned on staying at the Quantum house but decided that maintaining as much normalcy in our life would be important for all of us. We were able to find a really nice 2 bed, 2 bath condo for not much more than we would have been paying at the Quantum house. It also has a pool which we plan on utilizing on a regular basis as pool therapy will be a big part of Hayden’s rehabilitation. It will also be nice to have a place for visitors to stay.
Looking back on the daily journal entries of the last surgery I could not help but notice that I tend to candy coat the situation…my feelings particularly. I think I was trying to protect the feelings of my family. I did not want them to worry about how I was doing. Reading the daily posts I can’t help but say out loud “that was a horrible day for Hayden, she was miserable, why did I make everything sound like it was just fine.” We decided to make this blog so that we could keep family and friends informed but to also offer insight of our experiences to other families who will be going through similar situations. I owe it to those families to be honest about our experiences and feelings so they might have better insight of what to anticipate. By no means do I want to be gloom and doom or scare those that are embarking on similar journeys but I do want these families to get a realistic picture of what this journey is for us. Each of these special children are unique and will walk their own special journey…no two will be alike. I cannot help but believe that as parents we likely share many of the same fears and heartache as we make these difficult decisions on behalf of our most precious little ones. We likely share the same gut wrenching sadness watching our little ones go through the pain no child should ever endure. The hardest thing I have ever had to do is walk my baby into the operating room and watch her be put to sleep. There is nothing like handing your child’s life into the hands of strangers. So I will do my best to be honest and share not only the joys and triumphs I know we will get to experience but also the hardships and struggles we face on this journey.
Shawn and I have mixed feelings as we approach Hayden’s surgery. I look forward to the day that Hayden will be running around care free with both feet on the ground. Getting both feet on the ground” has become our new theme phrase. I also am looking forward to getting to spend lots of time with Shawn and Hayden while in Florida. I know we will get to meet some special families that know exactly what we are going through. It will be good for Hayden to spend time with little kids that are just like her. It’s all the rest I am dreading. The surgery, recovery, pin care, physical therapy, add on surgery’s, MY LITTLE GIRL HURTING, the list goes on and on. We have followed some of our PFFD friends on Facebook this past year so I feel we have a small idea what we are in for. We have been planning for this day since Hayden was a baby and now it is nearly here. It is surreal to think that in 2 months we will be on our way to Florida for four months. I am still going crazy trying to figure out how to plan for a trip like this.
Shawn and I have been discussing for a long time how we should tell Hayden about the surgery. She is such an intelligent little girl. I do not want her going into it blind. Both Shawn and I feel strongly that we need to have some sort of conversation with her about it. Fortunately with my line of work (RN in a pediatric ICU) I get to work with some amazing people. There is a child life therapist that works with me who is going to help facilitate this conversation. The day before we leave for Florida we are going to meet with the child life therapist at my work. She has some really great ideas on how we can talk to Hayden about the surgery. There is a really neat program at the hospital called “Beads of Courage” that she is going to get Hayden started on. There is also a doll the therapist is going to give Hayden. They will wrap her leg and do some other things with it. I think we will just tell Hayden at that time that “ We are going to Florida so that Dr. Paley can make it so you won’t have to walk on your tip toe and wear your big shoe anymore.” I wish there was an instruction manual on the right way to handle these things, but there isn’t.
Insurance
I am excited to share with you all of the many blessings our family has had the last few months. After hearing devastating news that our insurance reduced physical therapy from 60 to 20 sessions per year we found a case manager who took on Hayden’s case (Hayden will need 120 sessions for the 4 months we are in Florida). She truly has been an answer to our prayers. She put together a convincing case on Hayden’s behalf. Dr. Paley also wrote a letter stating that the surgery would be a failure without the physical therapy and ultimately result in more corrective surgeries in her future. Well thankfully the medical director of the insurance company who has a reputation of not granting any more than the policy states agrees and has granted us unlimited Physical therapy for the time we are in Florida. HIP-HIP-HOORAY! God truly is watching over us and answering our prayers.
Helping Hayden Benefit
Our Nancy, Hayden’s babysitter, who has been taking care of her since she was a new born, put together an amazing trivia night benefit for our family this past June along with some other dear friends.
