SickKids

Again, its been a while. Sadly, I seem to have a hard time updating frequently....not sure why, lol!
So, since our last post we have had the visit to SickKids Childrens Hopsital that we have been long praying for and anxiously awaiting. We were referred to SickKids back in February of 2012, and finally last week we met with Dr. Carter Snead in Toronto.  We started out appointment at 9:00 with a fellow (a specialist in training) for over an hour. We went through Josiahs entire story with him, from being diagnosed with Unilateral Hydrocephalus in the womb, to his first seizure at 4 1/2 months, right through to now. After we were done with the entire history, he takes that and all his notes back to the Dr (Dr. Snead)...they discuss everything, review his most recent tests etc...and then the two of them came back to us. They also brought a nurse we will be dealing with down the road, as well as a social worker, who will look after helping us find places to stay in TO etc. The purpose of our referral to Sickkids was because our local Childrens Hopsital has done all they can with Josiahs epilepsy. His seizures are not controllable with medication, we have tried and failed 7 medications. The statistics show that after failing 2 medications, the chances of EVER having sucess with any other medication are less than 1%. The next option was the Ketogenic diet. We have tried that (we are still on it)....and it is not sucessful in stopping his seizures either. The only other alternative medically for us is surgery. I say medically, because we will always hold to the hope of a miraculous healing some day. But God is good, and this is where he has brought us. He has given us an appointment with the BEST Dr. in Canada, at one of the TOP 3 Epilepsy centers in THE WORLD! Again, GOD IS SOOO GOOD!
      So, the 7 of us sat and discussed out last medical option. Dr. Snead feels that from the limited data he has seen, Josiah appears to be a potential surgical candidate. One thing that we have going for us is the fact that the reason Josiah has epilepsy is due to the amount of damage his Hydrocephalus has caused to the left side of his brain. That means that there is a point of origin. The seizures should be starting in the damaged brain, and spreading to the rest of the brain. Solution being-take out the damaged portion, and they theoretically schould stop. That being said, we have a lot of tests ahead of us. They have ordered a slew of tests to find out exactly WHERE in the brain the seizures are coming from, to ensure that they are actually starting in the damaged brain. They also want to make sure there is no residual damage to the right side of his brain....if there is, removing the left side damage may not be enough to stop the seizures. But this is all going to be figured out through the tests. Josiah will undergo a MEG scan and a 3T MRI scan (HD MRI), as well as he will be admitted to the Eplilepsy Monitoring Unit, where they continually test you over a period of about a week to gather all the data they can. He will also see a couple other specialists. From there, they will review the results of all the tests, and determine if the surgery would be sucessful. If so, we go forward, if they determine it would not be sucessful, then thats the end of that road. So, we continue to pray for the Lords will. That's all we can ever hope for. Where HE wants us to be is where we want to be.
Josiah is now 1 month off of Phenobarbital, which was the very first seizure medication he was started on, and the one medication that he has been consistently on since then. It is an "old" drug, and you aren't supposed to remain on it after the age of 2 because it significantly impedes developement mentally. He has remained on this drug up until now, because you can only change one medication at a time, and up until October, we had always been trying new meds.  Boy, what a difference it makes being off the medication. We do find him more cognitivly aware for sure. Playing independantly a bit more, recognizing faces we practice in picutres, etc. Its awesome!!!
The Lord has brought some very special people through our lives, and I have to mention a lady from our Church, Joan Belsher,  who has been such prayer warrior on Josiah's behalf! She is such a beautiful woman of God, always mailing us little cards of encouragement with scripture verses. She organized a week long 24 hour prayer chain for when Josiah was having his ICP surgery, and again for this appointment in TO, she sent out prayer cards to a list of committed prayer people. We dont know all the people praying for our son, but we sure feel the effects of their prayers. Joan sent me a scripture...."the effective ferven prayer of a Righteous man avails much" James 3:22.   So we keep praying

God Bless,

XOXOX
Tash