Oh this could take a while. I have been up since 4am and this has been the longest day of my life I think. So here it goes..
Kahlai's EEG was SUPER abnormal... and I try to say that in the most understanding way. In one hour of monitoring, there was not even 10 seconds of normal activity.... WHAT?!?! My boy??? MY BOY?!?! Abnormal? Are you joking? This must be a dream... a bad one.. cause I still don't think it's really set in yet..
Kahlai had over 40 seizures by 2pm... we met up with the Ped Epileptologist we have been working with this week and she gave us the low down.
He has primary Generalized Epilepsy of the Myocronic Type. This means that there is no rhyme or reason for the seizures. There is no stimulus, trigger and the MRI in two weeks will tell us whether or not it has any metabolic base.
The doc said that it was a severe case and just so happened to be a very unusual type of epilepsy that is most difficult to control.
Then she told me not to cry... told me that it wasn't a death sentence... and I told her that like other things in my life... I am just having a slap of reality that I am not immune to things happening in my family... that all of those unimaginable things don't just happen to "somebody else's kid".
So he kept seizing in the clinic today... i kept counting and once i surpassed 40 she stopped me and told me to stop counting. I told her that it is nice to know so that i can measure progress... hmm.. I think I'll still keep a count anyway.
What the heck am i talking about.? My son... MY SON... MY BABY! My, now, epileptic child. Wow. Whoa. What?
So we are trying to educate ourselves an our families on this so that they all understand the best about about all of this. This weekend is his dad's weekend and it is hard for me to be away from him... VERY HARD. He has developed a rough cough over the course of the evening and it has only gotten worse tonight.. i can hear him cry on the phone... this is breaking my heart in more pieces than I ever thought my heart could be broken in...
However, i will not emotionally attach to the medical report.. all of the possibilities of negativity and allow them to paint a picture so dark that we can't see a bright future for our son.
Instead i will believe in the report of the Lord. That is all.
I am exhausted and pretty close to blank.
Please pray for us.
Thank you.
Kahlai's EEG was SUPER abnormal... and I try to say that in the most understanding way. In one hour of monitoring, there was not even 10 seconds of normal activity.... WHAT?!?! My boy??? MY BOY?!?! Abnormal? Are you joking? This must be a dream... a bad one.. cause I still don't think it's really set in yet..
Kahlai had over 40 seizures by 2pm... we met up with the Ped Epileptologist we have been working with this week and she gave us the low down.
He has primary Generalized Epilepsy of the Myocronic Type. This means that there is no rhyme or reason for the seizures. There is no stimulus, trigger and the MRI in two weeks will tell us whether or not it has any metabolic base.
The doc said that it was a severe case and just so happened to be a very unusual type of epilepsy that is most difficult to control.
Then she told me not to cry... told me that it wasn't a death sentence... and I told her that like other things in my life... I am just having a slap of reality that I am not immune to things happening in my family... that all of those unimaginable things don't just happen to "somebody else's kid".
So he kept seizing in the clinic today... i kept counting and once i surpassed 40 she stopped me and told me to stop counting. I told her that it is nice to know so that i can measure progress... hmm.. I think I'll still keep a count anyway.
What the heck am i talking about.? My son... MY SON... MY BABY! My, now, epileptic child. Wow. Whoa. What?
So we are trying to educate ourselves an our families on this so that they all understand the best about about all of this. This weekend is his dad's weekend and it is hard for me to be away from him... VERY HARD. He has developed a rough cough over the course of the evening and it has only gotten worse tonight.. i can hear him cry on the phone... this is breaking my heart in more pieces than I ever thought my heart could be broken in...
However, i will not emotionally attach to the medical report.. all of the possibilities of negativity and allow them to paint a picture so dark that we can't see a bright future for our son.
Instead i will believe in the report of the Lord. That is all.
I am exhausted and pretty close to blank.
Please pray for us.
Thank you.
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