It has been some time since we have posted. Hayden and I will be making our first trip to Florida without Shawn in May. We are all sad and disappointed he will not be making the trip but now that we are paying for a full price ticket for Hayden it is too expensive for all of us to go for such a short trip. We will be seeing Dr. Paley for a pre-surgery appointment. I am sure it will consist of x-rays, an evaluation of Hayden, and LOTS of questions for Dr. Paley regarding the upcoming surgery. We have scheduled Hayden's next surgery for September 25th 2012. This will be her first of two lengthening. We will be staying in Florida for 4 months at that time. Our 4 month stay will be heavily focused on intense daily physical therapy and frequent appointments/x-rays with Dr. Paley to closely monitor the progress of the bone growth.
It is overwhelming trying to plan all that needs to planned for such an extensive trip. We have already reserved our spot at the Quantum House. I keep wondering how does one pack for a 4 month trip. Hayden will be required to go to land physical therapy 5 days a week. In addition to this Dr. Paley's patients have seen great results by participating in water therapy. This is something both Shawn and I want Hayden to do as well as the land therapy. Unfortunately we only receive 60 PT sessions per calendar year. This is why we scheduled her surgery at the time we did. We will be covered for sessions in 2012 and 2013 giving us a total of 120 sessions. It seems like that should be plenty but if Hayden does both the land and water therapy we will be exceeding what our insurance allows and left with paying $9000.00 for therapy out of our pocket. This in addition to all the other medical expenses and staying in Florida for such a long time. This is a daunting thought but we are committed to making sure Hayden has every opportunity to get the very best outcome this surgery has to offer. Shawn and I are willing to make any sacrifice necessary. We are hoping to put together a fundraiser soon to help out with some of the anticipated expenses. We have tossed the idea of a walk or dinner. If you have any ideas please let us know.
A couple Pffd families are currently in Florida for their lengthening at this time. Both the children are Hayden's age. It is heartbreaking to see the struggles these little ones are enduring but encouraging to see the progress they are making. In approximately 4 weeks Lily has gained 28 mm of bone growth and Ethan gained 26mm. They are such brave and strong kids. Please keep them, as well as their families, in your prayers. Although we have not had the opportunity to meet these families in person we have developed a close bond with them as we walk through such similar journeys.
Shawn recently met a mom of a 9 month old little girl with Pffd. Her story is similar to Hayden's, each share a very close leg discrepancy. He just sent off Hayden's first pair of Ugg boots with a lift to the little girl and they fit her perfect. We are thrilled this little angel will get some use out of them. Looking at those cute little boots made me think back of the first time we got her lifts put on her shoes. I remember feeling very sad when I saw them for the first time and feeling very guilty for feeling so sad. I knew it would be the first time people would notice Hayden's leg discrepancy. I was uncomfortable with how others might react, the looks she would get, the questions that would be asked. I remember not being sure how I should react to all of it. I remember feeling horrible that when we went out I considered not putting her in her shoes to avoid the public’s reaction. I hated the thought that they would pay attention to her disability before seeing her beautiful face. We titled this blog Hayden's Journey but in fact it has been a journey for Shawn and I as well. Time has allowed me as a mom to accept that my daughter is beautifully unique! She is my heart and I love everything about her. She is so beautiful and has such a fun and free spirit. I realize that when Hayden goes out many people do turn and stare, but it warms my heart to see the smile she can bring to a perfect strangers face. If I could share one message with those that turn and stare is that I understand that our human nature lends us a natural curiosity to those things we do not understand. For that reason as a mother of a child with a disability I ask you to come to us and ask your questions. It is always children that will ask us why Hayden wears such a big shoe and it is these moments that I can explain that God made Hayden with one leg shorter than the other and her shoe helps her to walk. And with that Hayden runs off with them and they play with her as if she was no different. If only adults could learn from the innocence of a child.
