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Tuesday, June 18, 2013

Saying goodbye to preschool and hello to new bright beginnings....

     We have a big independent kindergartner!  I cannot even believe those words as I type them.  Hayden's last day of preschool was emotional for me.  I was sad we were leaving his wonderful teacher and para.  I struggled that my baby is no longer a baby. He truly is a boy growing up to quick.  There has been so many ups and downs the last 2.5 years. We have had some trying times with a suggestion of a wheelchair or his walker not working for the classroom. However, those trying times are far outweighed by wonderful moments.  Hayden is talking well, he is able to identify colors given choices, he can write a letter H, draw a person, draw a house, has a vivid imagination, and most importantly he can walk in his walker keeping up with peers.  When I first took Hayden to preschool he was just getting the hang of his crocodile walker. Since that moment he has graduated to a lighter weight walker a Nimbo.  This walker allowed Hayden the freedom he desired so much. He runs, he plays, and best of all he is proud. He is proud to walk in the stores and nothing is stopping him now. This post about preschool would not be complete without me talking about Hayden's teacher and para. We love them dearly. I really struggled with the fact we would not see them every day. That someone new has to learn about Hayden.  I do not know how anyone would love him the way his current teachers do.  I still worry.  I still want to know his favorite people in the whole world outside of his family will see him everyday. I felt safe knowing they got Hayden. Most of all I found people who believe in him and who were not scared of his disability.  They saw Hayden as a typical five year old boy. He was not treated different and I cannot thank them enough for being so wonderful to our son.  I know we will forever hold them in our hearts and we will keep in touch. They were so critical to Hayden's success the last few years.
     Hayden just finished another year of baseball. He had such a great time playing on the Phillies. He definitely looked forward to every game. As you may have guessed Hayden was quite the ladies man. Whenever we had female buddies you can bet Hayden had a few playing with him.  I am not sure if I should be worried that my five year old has a way with the ladies already. Unfortunately, he was not able to finish his last two games since he sprained his hand, but he definitely is looking forward to next baseball season.
     A few posts back I wrote about some more genetic testing for Hayden.  For those following Hayden's story we really do not know what is causing most of his delays.  We do know he has a underdeveloped cerebellum, suffers from hypotonia and ataxia, and has some vision difficulties.  We have been through two MRI's, two genetics doctors, vestibular testing, micro arrays, muscular dystrophy testing, PMD testing, other scary disease testing I fondly call (the M word), and most recently we completed a hereditary ataxia panel.  After several weeks of waiting, which is the worst part we finally heard from our neurologist.  All the testing came back normal.  Normal is great news but normal is also frustrating news. I am relieved he has nothing life threatening, but I wish I had a reason for his delays. For his future I feel it is important to still search for an answer.  I had a conversation with his neurologist and we decided it was time to consult another neurologist. This time we are headed to Children's Hospital of Philadelphia.  This will be the forth neurologist Hayden has seen and I am hoping he might have some new ideas or he might finally just reconfirm that what we are dealing with is an unusual form of cerebral palsy.  Stay tuned to our neurology updates.
    I want to end this post on some hopeful news.  Hayden had an orthopedic doctor follow up on Monday at AI Dupont.  We love Dr. Mackenzie! He truly embodies everything a children's physician should be. He is kind, he is optimistic, and he treats you as if you are his only patient.  He examined Hayden and we were shocked to learn Hayden grew 4 inches since December! I knew he got bigger but four inches wow!  He was so impressed with our little guy. He could not believe how strong he has gotten and how fast he has gotten.  Hayden loves to walk around the muscle clinic hallways to pass time. He also loves to stop and socialize with everyone. I mean everyone nurses, doctors, students, patients, cleaning staff, and the list goes on.  The muscle team knows Hayden by name. Not sure if it is because he is very outgoing or because he is a mystery.  Anyway, we met with Dr. Mackenzie who spoke of all the things Hayden has accomplished in a few short months. It's hard to realize how far he has come when I see him every day.  I was thankful he pointed out these little inch stones to me. Dr. Mackenzie looked at me and said this little guy is going to walk independent. I looked at him and said really without a walker?  I have always been hopeful but I am cautiously optimistic. He has improved so much and I dream that there is a day things are easier for him. But hearing those words from Dr. Mackenzie made me smile and made me hopeful. He said there is not a time limit on when someone has to graduate from using a walker. It is going to be when Hayden does it and when he can control his balance.  Little did he know how much hope he gave me. Even for a five minute conversation I had hope. I wanted to hug Dr. Mackenzie but I thought it was best I did not shock him with a hug from an emotional mama. I still am beaming about our visit to AI yesterday. From the time Hayden stepped out of the car in his walker. He walked with me I did not need to direct him or slow down.  We made it from the entrance and upstairs in 10 minutes. He even stopped to see a therapy dog at the hospital. She was a chocolate lab and we all know our family is obsessed with labs.  We arrived at the muscle clinic in time for him to play angry birds which made his day.  After his appointment we had to head to Lawall's to have his brace fitted.  Hayden walked again.  Once we got to Lawall's Hayden tells the receptionist " I am here where is Mr. Gary?" she said he is with someone now. Hayden tells her that is fine I will walk around some more.  My boy who struggled 2.5 years ago to keep up wants to walk around some more!

  Until next time....  Thank you for continuing  to follow our story!  Thank you for letting me share our accomplishments and joys.