hi everyone !
all of your prayers are working . thank you all for your support . the other night i was so upset . it is hard to feel powerless and have no answers . kellan is up and down . some days are better than others . he may have had a seizure today .  it was the nurse who saw it . i called neuro and let them know what happened and what symptoms he was having .

we had had neurology on Monday with our new specialist . it was our first time ever seeing a neurologist . i brought video and pictures . he looked it over and gave us a pretty straight forward answer --he doesn't know !!!! well at least he was truthful . he is however willing to do all he can to figure it out. he is starting with going over the films of all his MRI"s and CT to see if there is anything he can see . no matter how small . we are going to be admitted to the hospital for a 3 day , long term , EEG . this will help monitor brain waves and see if he can catch anything abnormal , especially seizures . he said if nothing else pans out then they are going to have to consider the possibility of the chiari being the culprit .
i do have better understanding of what has been the problem of diagnosing his symptoms . kellan has allmost every risk factor for him having something like this happen .

1:GENETIC HISTORY _(my husbands first child was born with CP, seizures and progressive brain damage )

2:reduced blood flow to part of his brain from ECMO . his carotid artery and jugular  vein on the right are ligated .

3: frequent hypoxic episodes (lack of oxygen )

4:brain cyst and multiple head/brain surgeries

5:CSF infection that caused the sheath that covers his brain to get irritated and go into seizures .

6:history of other birth defects

7: cerebellum  herniation and too little fluid in his ventricles

poor kellan ! it is all of this that plays into making a diagnosis difficult . it would not be responsible or safe from them to just say "oh this is the chiari " ,do surgery ,then possibly put him at risk for death ; only to find out that the base problem is still there and they had made a wrong diagnosis .
it could be any one of those factors that are playing into his problem ,plus maybe a few other things .

we had neurosurgery today and that appointment went well also . it was more of a followup visit and i asked a few questions . i asked if the brain / skull disproportion is still going to be addressed and if surgery is still in the cards . surgery to revise the shunt is still going to     happen . they are going to try this approach to getting is skull to expand before they become more aggressive . the surgery to expand his skull is very risky . it comes with a lot of blood loss and as i have said before they have to cut into kellan's only blood supply on that side of his head to do it .
i am still freaked  out by the whole thing when i think about it. i worry about them turning the pressure up in his head only to find his brain herniated more .i worry about my son being in pain, i worry he will seizure or get an infection again . i worry .....WELL ... I JUST WORRY , YA KNOW . he's my baby .especially when i know what could and all ready has happened . 

 i got a letter from a family member who told me , in a very nice way , to quit freaking out , get a grip and trust GOD . HE has it  all in HIS hands . i of course got irritated and thought "what do you mean . don't you see what i am going through here . easy for you to say "  after i got upset though i realized that there was some truth to what she said . i guess i got an emotional "slap " when i was border line hysterical to snap me out of it . i was starting to emotionally spiral .
the devil plays on our greatest fears . he twists them and taunts us with them . getting great satisfaction out of hurting us and seeing us suffer . i will preferre to have faith in GOD , thank you very much .
thank you all for your prayers ,once again . as i have said , they do not fall on deaf ears . your prayers carry us through , lift us up , bring healing and miracles , carry comfort and protection. it is as much tangible as having you all here in person to help us every day . for that i am very grateful .
GOD bless you all . i love you .
dejah rogers

p.s. i updated kellan's pics . i found some old ones n the garage . he was so little in them and he was so sick . it helped me see how far he has come and how much better things are now sometimes compared to what it was like back then . he was so darned CUTE !