Just wanted to write to you all this morning…One year ago today was one of the scariest and darkest days I can remember since losing little Patryk. There was such fear while not knowing what was happening to Maxwell….after testing, three full tonic clonic seizures, rage type reaction to first seizure medicine administered, doctors were telling us that his MRI showed a gray area, heterotopia, which is a abnormal area in the brain where in utero tissue formed slightly abnormally. Many people are born with it and never suffer a seizure in their lives, but it is also a common finding in seizure patients. So this finding means something and it doesn’t(so frustrating as a parent to hear). What this finding does tell us is there is a possible reason for the seizures, helping to calm our nerves that what was happening to Max was different from Patryk’s unknown neurological complications. Doctors assured us they see no similarities in the two cases and we spent five days in the hospital doing testing and medication changes. We went home and things behaviorally took a turn for the worst, beyond anything you ever want to see your child reacting too! Then I caught the super flu going around and couldn’t move off of the floor while my family rushed max to the doctors (Thank God for my Mom who cared for Katia during this all!) They took him off all anti seizure medicine to see if he would have another seizure and two days later when the meds where out of his system he dropped down again, seizing….Sigh….By definition Maxwell has Epilepsy, but is not being formally diagnosed because he is so young(many young children outgrow seizure conditions). We found a medication with minimal side effects which he still continued to have partial seizures over the last year. Everyday was unknown and still is, but Maxwell has not had a noticeable partial seizure since January….he has been sleeping better at night….he has had less panic attacks and is overall doing much, much better the past sixty days! I’m not sure we are out of the woods quite yet, but sitting here one year later after everything we went through I have hope! Today is a better day for our family, but this year has taken a tole on us all, one of the hardest years since losing little Patryk. I want to thank everyone who has been there for us, TRULY THANK YOU!….We love you all ♡ Praying this year is about healing more as a family and for continued recovery for Maxwell!
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I am praying for you and your family. Before becoming a mom, it’s hard to conceive how much love our hearts can hold. Little Patryk was blessed to have you, and I know you are blessed for having him in your life. May God bless you all!
Thank you so very much Donna, God Bless!
My heart goes out to you. As a mother, and the mother of a child diagnosed with multiple sclerosis, I know how scary it is to not know what is going on with your child or what the future may hold for them. We feel helpless and it’s heartbreaking not being able to just make everything all better. So, many hugs and prayers for you and your family! I pray in agreement with you and many others that little Maxwell will be healed, and will no longer have to endure these seizures!
Aleesha, Thank you so very much! Prayers to you and your daughter as well! ♡