It's been a while since I last posted a blog. I know I constantly say that and it's true. Trying to get into the habit of updating this blog is harder than it seems. I had almost 2 weeks in BCCH with Dinky and I thought about doing it then but ... I got caught up into the wonderful trap that is known as Netflix.

In the last month lots has changed. We did a video confrence with our neurologist and her team and it was decided that indeed the Ketogenic diet would be our next step in trying to gain seizure control. So we were admitted into BCCH on October 25th. The day after Tink's 3rd birthday. I cannot believe she's already 3! Time has passed so quickly that it's almost terrifying. We are part of a program that covers almost all of Dinky's medical needs so they were able to provide us with a flight down to Vancouver. When we got there we were brought to a semi-private room (hooray no baby room!!) and while Dinky and I settled into a hospital room once again, our wonderful nurses explained what would be happening over the course of the next while.

Dinky had to fast for 12 hours to make sure that all of his regular formula was out of his body. Blood work had to happen to check for all kinds of vitamin and mineral levels. We had to do blood sugar checks every 6 hours for 72 hours after starting the Keto formula.

Monday morning brought on the formula changes. For the first little while he seemed to tolerate things really well. They started at a 1:1 ratio. Tuesday we moved up to a 2:1 ratio and finally started getting ketones! Ketones are the byproduct of fat in your body. This was a good thing. Wednesday we moved up to a 3:1 ratio and there things started to get tricky. Dinky was throwing up often and he was listless, tired, grumpy...all around just plain awful. So the team came by on Thursday morning just after a case of really bad puking and told me that they had ordered a chest x-ray to see if he had aspirated anything into his lungs. Now because the Keto diet is so high in fat if aspiration happens it's almost instant pneumonia. They also decided to change out his G-tube to a G/J tube. Chest x-ray came back perfectly fine but the risks were just too high. They checked his blood as well and that showed that he was so far into ketosis that his numbers were higher than they would like to see. So he got a 30ml shot of juice to see if that would level him out a little.

Friday morning the tube change happened. The G-tube feeds directly into his stomach. The G/J mickey has 2 ports. G goes into his stomach and that is to be used for medications and the J goes into his small intestine, totally bypassing the stomach. The only problem with that is that he has to be fed 24/7 at a really slow rate.

We had a hard time getting him out of ketosis, even with another 3 30ml shots of juice. The weekend was uneventful.

Monday morning we started Keto again. This time it was decided to go up in half steps to see if he tolerates it better. So Monday was 1:1. Tuesday was 1.5:1 and Wednesday was 2:1. Blood work was done on Wednesday to see if we needed to go up another half step or if Dinky's ketone levels were fine. And they were! We stayed at the 2:1 ratio. We were discharged on Friday morning to come home!

Husby was asble to get his last week of holidays moved so that he could stay home with the big kids for a week. To be honest I was really, really nervous about leaving them alone but he proved me wrong. As he always does! I need to stop underestimating him, or I just need to stop being such a worry-pants.

So that's what happened in a really small nut shell.

Keto requires a LOT of work. Everything needs to be weighed and measured exactly so. Medications need to be specific brands. Anything that touches Dinky has to be as low in carbs as possible. I never thought that things like shampoo, soap, body lotions and baby wipes would contain carbs. They do. It's terrifying. We have to check his urine ketones twice a day which requires cotton balls in his diaper and squeezing pee onto a strip. It also involves blood work every 3 months. But if we have good control, that's all that matters.