My Hero!

Kai's name in Chinese means Victorious Warrior Coming Home after War.   We definitely gave him the right name because he is fierce, courageous, adventurous and is my little hero.  When I think back to where he was in April of this year developmentallyand emotionally and where he is today, his progress is beyond belief.  The turning point for his progress was when he was diagnosed with seizure disorder in late August.  As most of you know most of the children being adopted from China are medical Special Needs.  When we decided to expand our family, I have to be honest, we wanted a child that had minimal special needs.   We found Kai and he fit that criteria perfectly, he was 6 months old when we first reviewed his file and was diagnosed with external hydrocephalus.   External hydrocephalus is usually a bruise and small collection of fluid on the external part of the brain and is considered a benign condition.  It normally corrects itself by age 18 months.   We had Kai's CT scans reviewed by two separate neurologists and they both said there was no fluid and he appeared perfectly healthy.  What we didn't know was that he had undiagnosed seizure disorder.  In order for you to understand how far this little guy has come, I have decided to devulge more detailed information about Kai's medical issues. 
The first time I saw Kai, he was beautiful, smiley, and happy just like the pictures showed.  But something was amiss, something beyond his severe developmental delay.  He didn't seem as connected to his surroundings or me as he should be.  There were times that he seemed to be spaced out, his breathing would be shallow and he would turn blue, specifically around the mouth and eventually bubbles would come out of his mouth.  I didn't know at that time that what he was having was called Petty Mal Seizures.    As the weeks went by, Kai and I were bonding alot slower than I had expected.   I feel fully responsibility for that because if you remember with Bei I had these strict boundaries that nobody could hold, feed or comfort Bei.   With Kai that all went out the window.  I was jet-lagged, tired from lack of sleep, exhausted from the constant physical demands of carrying almost a quarter of my body weight and I now had two kids who both were physically and emotionally needy.  But I felt like it also had alot to do with this "spacing out turning slightly blue thing too".    In August Kai took a knock to his head, which turned out to be an odd blessing.   It appeared that the knock to the head heightened his seizure, which made the seizures much more tangible, something that I could actually video tape, which I did.   Remember, the saying "Pictures paint a thousand words", because they really do!   In my initial meeting with the neurologists I tried to describe Kai's seizures, but I felt dismissed by the doctor.   Unfortunately, Kai passed out during that visit with the neurologist and he totally focused on him passing out.   And I was like ya, ya, he passes out but that is not why I am here...there is something else going on here.   I left feeling frustrated and somewhat defeated.   However, for the second meeting I  went armed with video of the seizures and "wa la" Kai was put on anti-seizure medicine that day!   His seizures are considered generalized seizures which is more moderate than a petty mal, but not as severe as a grand mal seizure.   
Now here comes the best part...Kai changed almost instanteously with medication.    He is super independent, he is tenacious, he is smart, he is courageous beyond belief.  This week I put Kai in the car, it was his nap time and he was crying.   As I was driving I reached my right arm around my chair and lightly rubbed his foot.  He jammed his foot into my hand and stopped crying.  When I pulled my hand away, little cries would peep out of my little guy.  Okay, I will rub your foot my little warrior as I drive.  And to see his face light up when he is able to stand a few seconds without falling is priceless, he is so proud of his own accomplishments.   Watching him in his 2 hour therapy sessions every week is amazing.  I don't think any other child would have the tenacity and sheer willpower to work as hard as he does without fussing.   The therapist tell me he is going to be perfectly fine because he is so driven.  And he is!  Because boy you better not help him if he doesn't want it because he will rip his arm out of your hand so fast and will show you that he can do it himself.   I am so blessed to have this victorious little warrior in my life!!!!   


Uncomfortable Conversations...

Let me share with you a conversation that Bei has been having with me daily for the past several months; "Mom, I don't want to die" Bei will say in a pleading voice. "You aren't going to die, Bei." "I want you and me to die together mom" "Okay Bei, I already have told God and he knows that" (wink wink God...we really don't want this to happen) "Mom, why aren't you ever going to die?" (Oops...did I say that once?)
This is a conversation that we have daily and every angle I take at it won't seem to put it to rest. So this weekend all of us are driving in the car and Bei starts his daily dying conversation "Mom, I don't want to die." "Okay, Bei, you won't". "Mom, I want you and me to die together" Dan interrupts him and sternly says, "Bei that is enough, we don't want to talk about dying every day. I don't want to hear another word of it". I am grateful to Dan for stepping in and ending this exhausting conversation, but I start feeling guilty. I'm thinking poor kid just wants to understand dying and I don't know how to answer the question. I am going to have to think of a way to bring it back up to him so he doesn't end up in therapy over the fact that his parents wouldn't let him talk about dying, morning, noon and night. But I should not have feared...after about 5 minutes of total silence in the car, I hear Bei say "Mom?" "Yes honey?" "I don't want to die..." I guess the kid won't be in therapy after all...he is a persistent kid!