A quick update...

Since all the tests were completed, a lot has gone on. In July we met with Dr Snead, our neurologist, and our new neurosurgeon Dr, Rutka to discuss the results of their testing. The verdict was that Josiah is a surgical candidate, and their recommendation is a hemispherectomy. This surgery consists of removing half of the brain, In Josiah's case, it is his badly damaged left half of his brain. The left half of his brain is seizing almost constantly, and the right half remains in good condition. If we don't have the operation, the right side of the brain will learn to seize, and Josiah would eventually decline, losing his ability to walk, talk, and all cognitive functions. After the surgery, he will remain in the hospital for 2-3 weeks, and then transfer over to a rehab hospital for 2-3 months. ,Rehab will be necessary because removing the left side of the brain will render the right side of his body immobile. He will need to learn to move his arms and legs, fingers and toes all over again. He wont walk for a while, but with intense daily therapy, should be able to walk again!!! The surgery obviously involves some risks of complications, such as hemorrhaging, infection, and there is the possibility that removing part of the brain will upset the bodies complex cerebral spinal fluid system, resulting in this fluid accumulating and causing deadly high pressure on the brain...the remedy for this is another surgery to put in a fluid drainage shunt to assist the body with controlling the fluid. Surgery is booked Josiah cant be on the Ketogenic diet at the time of surgery for a number of reasons, and so we will have him weaned off the diet one month before surgery.
More soon....

And now we wait!!

Since all of the tests have been completed...for the first time over 2 years all we have to do is wait. We're not trying this medication, getting rid of another med, we're not on a waiting list to try a diet that "may work", or running from this Doctor to that Dr. We are waiting. And I must admit, it's a nice feeling. Its rather refreshing to know that from here on out, its ALL GOD.  So, on May 8th a large group of specialists  met at SickKids to pour over Josiah's case and determine if he is a surgical candidate based on the results from all the testing he has gone through.  Shortly after they met, I got a call from our Clinical Co-ordinator to give us an appointment to hear their decision. So, early in July we head back to SickKids to meet our Neurologist, Dr Snead, and then a Neurosurgeon Dr. Rutka.  All that being said, we have also been praying that the Lord would give us the necessary wisdom required to make the desicion to proceed with the operation if he is a candidate. Sometimes, the thought of a surgery of this caliber is so daunting, that on Josiah's better days, its easy to think that maybe we could just get by with him having seizures for the rest of his life. But, over the last few weeks, Josiah's seizure actiity has been reverting back towards his old patterns....the way it was before he started the ketogenic diet. Its not as bad yet as it was back then,his seizures are growing in  intensity, slowly, but still noticably. Also, he is beginning to have more absence seizures, which were also quite frequent before the ketogenic diet. All that being said, we are still plugging away on this diet, and Josiah is still tolerating it like a  rock star! He's so easy going!!!
Here's a couple pics!!!

 Josiahs a little tree lover.

We're Home

We're home now. So, since Josiah's seizures are so frequen, they were able to capture more than enough data via the EEG by Wednesday morning...so they set us free for a bit. It was really nice...Josiah got to get unhooked from the EEG monitoring machine. He still had to keep all the probes on his head, along with the wires, as they were needed for the MEG scan he was having Thursday, but at least he wasnt confined to a bed anymore. So, we walked, and walked and walked. We had days of sitting to make up for, lol. We bundled Josiah up and walked down from SickKids to the CN Tower, walked all downtown, took a subway (I wasnt a fan of that btw) to the Eaton Center (also found that a little overwhelming), then from there we walked up to Five Guys and had the BEST BURGERS EVER, lol. Then, we headed back to Ronald McDonald House with Josiah for the few hours of sleep we would get that night. He had to be up at 3 on Thursday morning to make sure he would sleep naturally for the MEG scan. Josiah never ceases to amaze me. When 3 o'clock Thursday am rolled around, and I woke him up, he smiled at me, and signed for me to do Itsy Bitsy Spider with him. He giggled, and smiled the whole way through. Not a peep about being unhappy that we disturbed his sleep. So, we entertained him until it was time to head to the hospital by taking him to the play room, the Toronto Blue Jays room, and then walking the halls, lol. He did awesome. He started to get a little cranky right before his scan, but that wasnt bad at all. So, when we got down to the MEG room, after his probes were all attached to the machine, we bundled him up, and he was asleep within 5 minutes.
So, Caleb stayed in the MEG room with Josiah (he's the pro at that kinda stuff)....and I stayed out with the technician. Josiah needed to sleep for the first part for a minimum of 45 minutes, and Praise Jesus...he slept for 50. So for that they got all the imaging they needed. The purpose of the second part of the scan is to identify where your mobility sensor is located in your brain, and to do that, they attached a band to your wrist that sends electrical current (a little stronger than licking a battery) through your hand. They scan while this is happening to see where in your brain reacts to this stimulation. So, they started this with the right hand, as it is controlled by the left brain, which is where all the damage is for Josiah. They prefer to have 2 scans at 2 minutes each for both sides of the brain, however, the current machine stopped working after they got the first 2 minutes scanned. Caleb and the tech played around with the wires, and had it working for a few seconds at a time, but by the time they got it all attached to his left hand, Josiah decided he had had enough, and we couldnt calm him down. Since its very imprtant to hold still, you cant move more than 1/2 centimeter while the machine is scanning, we couldnt capture the left hand stimulation on the MEG. But since the right hand did have one successful sequence, the Tech was hopeful that that would be adequate for the doctor. We will find out soon. So, because they were semi-successful in getting the MEG images, we stuck around to have an MRI there to complete all the testing required.
So, Thursday night we were released again to Ronald McDonald House. We took a drive out to Pearson Int'l airport to watch some planes land (one of Calebs fav. things to do). Then, we went to check out the Woodbine Mall, had dinner at Wendys and headed back to Ronald.
We had to be at the Hospital for 7 Friday morning as we were on the "on call" list for the MRI, but they were unable to squeeze Josiah in Friday. The Dr. decided that he would prefer to put Josiah under General Anaesthesia to ensure they get a quality scan, as it was all they still needed, and so from midnight Friday Josiah wasnt allowed anything to eat/drink. Because he is on the Ketogenic Diet, we had to monitor his blood sugar and urine keytones closely, as fasting can cause big problems, but again, Praise Jesus, Josiah was fine. The scan was at 10, and took roughly an hour and a half. We were there when they put Josiah to sleep, and this was by FAR the best experience we have had to date with sedation. This time, they just injected a little anaesthesia into his i.v. and he quickly (seriously-like in 10 seconds) drifted to sleep. No crying or screaming like previous times. He woke up the same. He was groggy, but still smiley. Such a little trooper. So, we had to stick around the hospital for about 2 hours after, just to make sure he tolerated food ok, which he did. And then we hit the road home! What a great feeling!! lol. So now we wait for the reports to be reviewed by all the specialists. All the neurologists and neurosurgoens will be meeting in 4-6 weeks to discuss his case, and decide together if he is a surgical candidate, and then they will call us for an appointment to discuss their decision. 
Here's some pics of our adventures.

 Getting the Leads/probes all ready for the MEG scan

 The MEG machine

 A pic of the monitor that watches Josiah in the MEG...thats him asleep in it while being scanned

 Watching planes with daddy-he is squinting from the wind, lol

 after the MRI, all smiley

God Bless

Epilepsy Monitoring Unit

 In the Kitchen at Ronald McDonald house. I am preparing Josiahs Ketogenic Food

 Second Day in the EMU.....Josiah and Daddy having a cuddle

 Sitting in the stroller to get a break from the bed

3 days into the week, they unhooked Josiah from the EEG monitoring unit, but left the EEG probes on for the MEG scan he would have on Thursday. This picture is taken in the Toronto Blue Jays room at Ronald McDonald house.

 

 

Here we are at SickKids in the Epilepsy Monitoring Unit. We stayed last night at Ronald McDonald House here in Toronto, and came to the hospital this morning. Josiah is booked into the EMU for 5 days. They will do a continuous Video EEG for the entire time he is here, capturing any seizures via the EEG Wires/Probes and camera. So far, they have captured more seizure data in his 1/2 day here than they get in an entire week for many patients. He is scheduled to have a MEG scan on Thursday....he needs to sleep for that one, and they are going to attempt to do it without sedating him (the wait list for sedation is ridiculously long). So...since we need him to sleep...we have to deprive him of sleep before the scan.....lucky for us that means waking up at 2:00 Thursday morning and keeping him up until the MEG scan. So, we will see how that goes. They are also attempting to book an MRI for while we are here...if they are successful, and the MEG and MRI scans are a success, then Josiah will have completed all the pre-surgery tests that they require. Then the Drs will make their desicion. We'll see how this week goes.

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

Ketogenic Update

So, Josiah has now been on the ketogenic diet for 4 weeks, and here's whats new: One full week into the diet, Josiah had a seizure free day, which turned into two days seizure free, and amazingly, we hit 1 week seizure free!! What an awesome gift that was! Boy, what a life changer! Simple things were so much easier to do when we didnt worry about seizures. Sadly,  the day after we hit a week seizure free, he had 4 when he woke up that morning. The next day he had more, and that pattern has continued up to today, where we are pretty much back to where we started number wise. He is averaging between 30-60 a day again. The good thing though is that they are isolated to after he wakes up from a sleep. Before the diet, he had them randomly throughout the day, which meant he had to wear his helmet all the time. But now, he is able to walk around without the helmet. So, our prayer is that the random seizures stay away. He has a neurologist appointment coming up in a couple of weeks, as well as an EEG to see whats going on behind the scenes, so that will tell us if this diet has done anything other than what we can see. Thankfully, he is eating the food well for us, and seems to be tolerating it as best as we could hope. What a little trooper! He makes us so proud every day.
We have our Christmas tree up now, which Josiah just loves. I think the reason he likes it so much is it if full of "balls"....his most favourite thing in the world. To him the ornaments are balls to play with.....all sparkly and pretty :)
Thats all for now, just a quick post to update his progress so far!!
God Bless

Ketogenic Diet- Day 1

October 15^th, Keto start date

Josiah was admitted to the hospital Sunday October 14^th at 7:00 pm so that we would be ready to go first thing Monday morning. He was weighed in at 15.7 kgs. Our first night was uneventful, Josiah and I stayed in the hospital, and Caleb stayed across the street at Rotel.  That night, they put a urine bag on Josiah to collect a sample, so they could get a baseline of the keytones showing in his urine.

PICTURES OF JOSIAH'S "MEAL" AND HIM DRINKING IT

First thing Monday morning, Julie, Josiah’s dietician arrived with his breakfast in hand. Breaky consisted of a small amount of Microlipids (liquid fat), 35% cream, and KetoCal powder. His breakfast, lunch and dinner were this “shake”, and the entire days meals made up 1/3 of his normal caloric intake.  He was soo hungry, always signing and asking for “more”.  It was so hard seeing him hungry like that.

Sadly, Josiah was NOT a fan of the urnine bag, and refused to pee while wearing it. Midday Monday morning they did a bladder scan and saw that Josiah had 390 ml of fluid in his bladder.  Then, that was followed by their round of bloodwork, attempting first in the left arm, and when unsuccessful after a few minutes, they decided to move to the right arm. Then, as soon as that finished is when the nurse decided she could not wait any longer for him to pee, so she removed the urine bag...which was Very painful. Right after that, 4 of us held Josiah down while they attempted to insert a catheter to drain some urine out for the keytone test. After multiple attemts with that size, she tried a smaller size, and still had no sucess. Both times when pulling the catheter it was lined with blood.  Poor little guy! By the time that was all over with, they wanted to put another bag on, as it was still very important that they catch some urine, but I told her I couldn’t do it!! Instead, we loaded his diaper with cotton balls, and would use them to collect what we needed.

Because the catheter did some damage, every time he would start to pee for the rest of the day...he would scream and cry, and stop himself from going. Finally around 7:00 Monday evening, he finally bit the bullet and went. He cried for soooo long, and we felt so helpless. Not a nice feeling at all.

More tomorrow J