A little after her second birthday she had an ear infection and Julie and I were noticing that her balance was just not getting any better after months of walking. Emmie fell a lot and just couldn't catch her balance for more than 5 steps. I also noticed that E was having a hard time grabbing things (almost like her depth perception was off). She thought that E should go see and ENT as it might be an inner ear thing.
I talked to my pediatrician about it and after telling him about the balance and depth perception he didn't think the ENT was the right person. He sent me to a Neurologist. A Neurologist?!! Not what we were expecting but I guess its better to cover all bases. Not a big deal ...there couldn't be anything wrong. Right?
The Neurologist saw us right away and after telling him about the balance, low muscle tone and depth perception he suggested that Emmie have an MRI. We were a little shocked and scared. Sedating our little girl while they did the MRI freaked us out. But we didn't have another option and wanted to make sure everything was OK.
The MRI appointment came fast and I was very nervous. Its a horrible thing as a mother to put your child through something like this because they just don't understand whats happening. They look to us for protection from being hurt.
The doctors came in the room and tried to distract Emmie with toys while I filled out paper work. I started feeling like I was in a tunnel after reading all the Dr garble about the sleep medication possibly being harmful to Emmie. After the paper work was filled out my husband and I had to help hold Emmie down while they put the IV in. It was the worst thing I have had to do. She was screaming my name and looking and me wondering why. I fainted.
I felt like I failed her.....trying to be strong but couldn't. Its amazing that stress can shut your body down like that....I never knew. My poor husband now had to worry about the two of us.
Emmie is a fighter and it took double the medication before she was finally asleep. Brave girl!
When I was released from the ER feeling terrible and groggy...Emmie was finished with her MRI and outside playing in the grass with my husband like nothing had happened. She's my hero! Kids are so resilient.
It feels like it took us forever to get the results but they called to move our appointment to an earlier date. Hummm...maybe they're just being accommodating I thought. I hope...
We went in on a Monday morning and sat in the Neurologists office. He came out right away and said "Well...the results weren't good. Emmie has a brain condition called Pachygyria"
A BRAIN CONDITION?! Not something we were ever expecting to hear about our daughter. I went into a tunnel...trying to listen to the Dr's diagnosis and hold myself together.
He also mentioned that she had fluid on her brain and might need a brain shunt as well.
AND an old hemorrhage in her brain. DOES THIS EVER END?
He told us that Pachygyria was rare and that he didn't know much about it. He advised us to go online and learn a little more. We had SOOO many questions. Did he really just tell us to go online to research?
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