Hello!
I am glad to have finally figured this forum out! What a wonderful place, so full of information
I am Lisa (34) my husband Calvin (33). We have 2 children together and I have 2 children from a previous marriage. Jordan (12) Deven (10)- the 2 greatest kids ever! They are my kiddos from marriage #1
Kali ( Wish child! 3 in June) and Emma Claire (11 months). My husband and I have been married a short 4 years and it has been a very rough 4 years.
I had my tubes tied after my 2nd son was born, never thinking I would want more children. Fast forward a few years and I meet Calvin, he had no children of his own and desperately wanted his own children, so I opted to have my tubal reversed. We married in May 2005 and I had my surgery September 2005 and I was pregnant with Kali by October 2005!
Kali was born June 22 2006. a healthy 9lbs 10oz (2 weeks early!!)
When Kali was 4 1/2 months old she had her 1st seizure. It was November 6th 2006. She stopped smiling immediately, lost all head control and continued to have sz's constantly. After I begged the Dr's to do an EEG (2 weeks of begging) they finally gave us the heart breaking news. Kali had infantile spasms. It is the most catastrophic form of epilepsy.
Kali has been on over 21 sz meds, the keto diet & we have seen over 11 neuro dr's and 2 neuro surgeons. Developmentally she is 5 months old. She can sit on her own, but no communication. She cant walk/talk. She has a g-tube and can't eat table foods.
Kali has had 3 status sz's-one lasting 13hrs. She is a fighter though.. she amazes me everyday.
They question if genetics play a role?
Right now, her current diagnosis is intractable epilepsy and dravet.
Kali's website is kalielizabeth . com
I must give meds now! be back soon!!