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Lydia’s Story

My name is Lydia Anne Fiesel. I was born on October 26, 2002. I was born 3 weeks early, but I had to stay in the hospital because my sugar dropped. After 2 months, I was not gaining weight. We found out that I was aspirating and that I had Grade 3 reflux. At 5 months old, I had my first seizure.

My seizures looked like infantile spasms, but it turned out they were benign myoclonic seizures. At 8 months, I got a G-tube in order to gain weight. After a week of having the G-tube, I began gaining weight and my seizures stopped. Today, I am healthy and happy. I am developmentally delayed, and I recently got a diagnosis of cerebral palsey. We have done many tests, but we still do not have a definite, well-defined diagnosis. I can walk in a gait trainer, and I laugh like crazy. Our motto around our house is "Day by Day!"

Latest Journal Update


Can't believe it has been over 2 months since I have updated.  Just means all is well.  Well, until Monday.  Little Lydia, who doesn't walk, managed to fracture her tibia and her fibula in her lower leg.  She was at therapy "jumping" Lydia style on the trampoline...which she has done for the last 5 years...when she started crying and wouldn't put her foot down.  Well, her therapist is so good...she knew something wasn't right.  While I was at work, Grandpa and Grandma took her to the doctor...who confirmed she broke her leg.  I met them at the doctor, and we went down to Gillettes to get a cast.  I have to tell you that I have the bravest, strongest, little girl!!!  She was such a trooper.  So now she has a full leg cast for 4 weeks.  The break in her fibula is on her growth plate, so after 4 weeks, we just have to make sure that is healed and her bone is still growing.  So needless to say, we are all learning a new way to take care of Lydia.  But like I said, she is awesome!!!!  She is trying to get used to this huge thing on her leg, which is throwing her off a little bit.  But...just another bump in the road!!!! 

Hope all is well with everyone!  Thanks for checking in!

Love, Kim and Lydia