We are so happy!! Today we learned that Hazel’s EEG done yesterday reads normal (except for the expected obvious changes from the removed tissue), no seizure activity, no Hypsarythmia. We met with Hazels’s Epileptologist who reports today that both her EEG and MRI look great. She sees a real difference in Hazel in the office today, as Hazel was interested in the doctor and wanted to type on her keyboard. In past visits, Hazel did not even notice the doctor in the room. She could see that Hazel’s gait and her ability to walk without falling had improved. We discussed her therapies and how she perceives Hazel’s development to progress. She feels that there will always be a gap in her development, but that Hazel will continue to improve and improve as she is already doing.
Many people ask us when or whether Hazel will “catch-up” and we really have no idea. We have decided to work our hardest and help Hazel move forward as best she can trying to remember that we prayed and worked for Hazel to survive and have seizure freedom. We know that she is currently delayed in all areas of development, except Social-Emotional for her age. Each child is different and Hazel was not only born with a malformed area of her brain where her seizure activity originated, but her whole brain suffered seizure activity from the generalized seizures (both Infantile Spasms and Tonic Clonic seizures).
We had a great discussion, all shed tears of gratitude, hugged, and made plans to see her again in 6 months, unless anything changes. At this time, if Hazel remains seizure-free then she will not need another EEG test or an MRI at one-year from surgery. At this one-year visit we will plan to wean Hazel off her one AED that she continues to be on, Zonisamide (Zonegran). She continues to take this twice daily. Her doctor explained that she rarely has the opportunity to diagnose a patient, as she did with Hazel and see them through into this small category of seizure control from surgery that Hazel is now in. When we were off to our next appointment with Hazel’s surgeon, her doctor said and waved goodbye. Hazel looked her right in the eyes while holding Allie’s hand and smiled. Her doctor could not believe her amount of eye contact and smiles. She said this spoke volumes to her.
We next met with Hazel’s surgeon and Hazy almost immediately crawled into his lap. He thought she looked great, as did her MRI. He had no concerns, as far as her EEG and MRI. We also discussed all that Hazel is doing in all of her therapies. His main concern after meeting with us was when we parents were going to get away sans children. He told us we needed to take a vacation and started making suggestions of where and when to go. We are pretty sure it’s a great sign when our child’s neurosurgeon wants us to relax and he is so confident that Hazel is doing well that he wants us to leave town!!!! We’ll take it!
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