Getting Started

Well here I go attempting to blog. I felt like this is the best way to share the frustrations and fun times of having a child with Special needs. Here is alittle background.....

        

   I have a 6 yr boy named Rylan who was diagnosed with Frontal Parietal Polymicrogyria Syndrome at 2 months old. But the fun didn't start there.......in my ultrasounds they noticed Rylan's head was measuring 4 weeks bigger then his body. So they were of course watching him closely and the my last ultrasound before giving birth the tech proceeded to tell me that Rylan was going to have hydrocephalus, club feet, down syndrome....and would pretty much be going to nicu because he probably wont breath on his own..........

        Needless to say NONE of that happened and I gave birth to what I thought was a beautiful baby boy.

       2 months later I took Rylan in for his check up and the pediatrician told me she wasn't comfortable with how Rylan's head was growing and wanted a CAT scan.....so we did that. Then the phone call came....that they noticed abnormalities on the CAT scan.....they need a better picture so they want an MRI done. Well this killed me knowing my 2 month old was already going to be under sedation.

       SO we did the MRI and then I get the phone call from the doc. Asking if i would please come into his office after his last patient.....i am of course freaking out now.....scared of what i am going to be told. So I called my mom who met me there when I received the news. 

       They noticed some severe abnormalities on Rylan's brain and he is not sure what to expect...in worst case Rylan will be a total vegetable.....(yes I was really told that) Best case he will be in special ed at school. We were then referred to a neurologist who then gave us the official diagnosis. I was told to put him on a living will because his respiratory system will not be good.

        Flash forward 4 years......Rylan was doing great until a week of shots..he ended up receiving his flu shot on a Wednesday and his H1N1 on a Friday. Saturday morning I woke up to Rylan running a fever and acting strange....so i get up to get him some Tylenol and low and behold I come back to the worst sight...Rylan was having a seizure. I yell for my parents who rush in to help.....I call 911 and while im on the phone the seizure ends and Rylan's not breathing and as limp as a rag doll....my mom tells me to tell them to hurry. 

         So they send an ambulance and we are rushed to TMC where to completed our very first hospital stay.....

         That brings us up to date......Where Rylan had a very rough winter with lots of hospital stays with lots of respiratory viruses and the last one being the scariest. I chose to have his tonsils and adenoids removed to help his breathing. The only thing i can say is he is a strong kid......he was always smiling

all smiles

on mothers day this year

As Rylan has gotten older and bigger his diagnosis has changed....he will always have the PMG.......but he also has generalized epilepsy, spastic quadriplegia cerebral palsy, and Macrocephaly.  He is super big for his age. weighing in at 61 lbs at only 6 yrs old and is almost 4 ft tall! 

      But all i can say is despite the all the appointments and work Rylan requires I wouldn't change it for the world He has made me the person I am today. 

tattoo done by Jim at Fast Lane

I even proceeded to start a tattoo in Rylan's honor.  You can't see it in the picture but it starts with Rylan at the wrist with a quote that begins underneath it and spirals up the arm saying "all gods angels come to us disguised"  and leads up to an owl in a tree. The Owl is representing Rylan's intelligence and the tree is a symbol of his disability trapping it.  

     Well thanks for reading!!!!