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Thursday, July 25, 2013

2033 days later we are diagnosed!

I have been waiting for such a long time to say and type these words. Hayden is diagnosed. After researching, seeing nine specialist, visiting two hospitals, two MRI's of the brain, and multiple DNA analysis we finally know. It took me a few days to gather my thoughts and truly believe this is it. I am at peace with knowing. All I ever wanted to know is what caused Hayden's delays.

Tuesday Bob, Hayden and I went to see Dr. Lynch a neurologist, who specializes in ataxia, neuromuscular diseases and rare syndromes/diseases at Children's Hospital of Philadelphia.  Heading into this appointment I prepared myself not to expect miracles. To know we will probably hear thoughts, references to characteristics of xyz syndrome, and even a we may not ever know. Instead the exact opposite happened. When we arrived at CHOP Hayden was extremely excited to get to walk in a parking garage, ride in an elevator, watch all the construction and talk to new people. I truly was apprehensive about this visit I had been tainted by my initial struggle to even get an appointment, but everything changed. The moment we arrived check in was quick and even checking Hayden's weight, height, temperature, and blood pressure ran smoothly. Hayden wanted to look out the window and watch all the construction. Finally, 11:30 arrived and I thought I am sure we would wait. Boy was I wrong! 

I heard someone call Hayden's name. I assumed it was a member of Dr. Lynch's staff. A kind man walked over to meet us and said "Hi, I am David Lynch". I looked at Bob in complete amazement. We ran on time and the doctor came to greet us himself. He already knew about Hayden from speaking to his current neurologist at AI and from reviewing all of his medical information. When we arrived in the room we went over some questions, he examined Hayden, had Hayden walk and then asked Bob and I what we see Hayden doing in twenty years. Without hesitation we laughed and said definitely a politician. Dr. Lynch laughed and said is that a good thing? We had to fill him in that Hayden is everyone's friend, loves people and certainly loves being on stage. He then left the room to gather his thoughts with his colleague. Again, not anticipating an answer he came back and gave us just that! 

We knew our little man was special,  but now we can add rare as another adjective to describe Hayden. Hayden has a condition called congenital cerebellar hypoplasia. Yes, it is rare, but it is not progressive, which is what we wanted to hear. I also needed to hear it was not my fault, it is not genetic and Julia is not impacted. I am sure you are wondering what exactly is cerebellar hypoplasia. Quite simple it is a small cerebellum.  Now, we knew something was not normal about Hayden's cerebellum but now we have the name of the condition. To put it into perspective Hayden makes number 16 that this doctor has seen. There is not much out there about what to expect. There is information on the progressive form which I am thanking our blessings we do not need to worry about. I think the best thing this doctor told us was enjoy Hayden. Stop the testing and involve Hayden in as much as we can. Now, we focus on physical therapy and participating in the Special Olympics. Dr. Lynch did more than he can ever understand he assured me Hayden is going to be a productive citizen and maintain a job. All I ever wanted is to know Hayden has nothing scary and that he will be independent.

My heart and mind are relieved. I can stop spending days and nights wondering what I did wrong or will we ever know. I can look at this wonderful little boy and feel confident Hayden is going to be okay. Right now I am going to take advantage of my sweet boy who loves therapy and figure out how insurance is going to allow more for him. I also now can focus on getting the right team behind him that shares our views for Hayden. I can celebrate the little joys and cherish the moments he is still my baby boy. I am so proud of Hayden and cannot wait to see all he accomplishes. 

Monday, July 1, 2013

Happy 2nd birthday Julia

Dear Julia

My little love bug I cannot believe another year has flown by. Wow, you are already two. Your second year started off pretty scary. We were so fearful of how your little body was going to recover from such a scary infection. However, you have proved us wrong and you showed me how to believe miracles happen. Every day you fight. You fight to get stronger and fight for your sassy little independence. I love how strong willed you can be. 

Amazing what a year could show us. You love life and love our little family. I am often surprised at all the little things you love. You love pink. Everything must be pink from your toe nails, clothes, and shoes. If it sparkles you love it! Purses, shoes and sunglasses are pure joy. I love the way you balance being extremely girly but enjoy playing cars with Hayden. I love the way your smile lights up the room. The way you say daddy melts my heart. I love the little barking sounds you make when you see your doggies Cody and Sophia. Our snuggles I do not ever want to let go. 

Baby girl you are so independent and so brave. You are definitely no one other than Julia. I hope you always stay independent and love able. I hope you continue to see the beauty in the simple things in life. I hope you stay sassy and decorate the world in pink. I hope you still love to paint and play with your brother every day. 

I hope you know how much I love you. How much I wish I could take away how tough this year has been. I want you to always remember how proud I am of you. I cannot wait to share many more toe nail, shoe shopping, pink and glittery days with you. Words cannot express how much I love you. You are my sunshine. 

I love you!!

Happy 2nd birthday my sweet Julia! I love you!!