A Busy Week

This past week I went back to work full time as I was running out of my FMLA and I didn't want to use it all up in case things get worse later on and I need the time.  So, last Monday I went back full time and wow, was I tired!  I was getting to work at 7 (leaving my house at 6) and leaving work about 4 and getting home about 5.  It was hard to go back and leave Joshua, but I knew he was in great hands with Chip. 

It was also the boys' last week of school (Joshua's last day was on Monday and Cole's last day was on Tuesday).  Tuesday was super busy for Chip as he had his final out processing for the Air Force that morning (in which he had to take Joshua with him) and then he had to pick Cole up from school and then take Joshua to his speech evaluation in the afternoon.  All 3 of them made it through the day and were still smiling when I got home.  We should get the results of Joshua's evaluation soon and then hopefully will get a date for starting his speech therapy at Mary Bridge.  We still have not made any progress on his OT and PT therapies as we are still on long waiting lists. 

With Chip's final out processing he is officially done working and will be caring for the boys full time.  They have been having a lot of fun together already and have some fun things planned to do together this summer.  I am going to be very jealous going to work while the 3 of them get to play all day.  We are lucky with timing though because it is so wonderful that Chip gets to be home with them, especially during this time. 

The diet has been going well, but we had a set back Thursday when Joshua got into some cookies that Cole had hidden in his room that we did not know about.  Chip found Joshua sitting in Cole's room enjoying a bag (small, the kind you would pack for a lunch) of cookies and saw that he had already finished another bag.  We don't know exactly how many carbs he ate, but we know he at least had 20 which is more than he can have in a single day so we were VERY concerned about him having more seizures.  He did have more seizures that night when he went to bed, but he did not have an increase in his daytime seizures so we were very relieved about that and he seems to be back on track now. 

And, speaking of daytime seizures - we have good news to share.  I hesitate in sharing it as I always feel like I'm jinxing myself, but I still have a need to celebrate when things are going well.  So, here it goes - we have not seen a daytime seizure in a little over two weeks now!!!!!  We are sooooo ecstatic about this because if we can keep this up, we will be talking to Dr. Korol in July about starting to wean Joshua off of Depakote which I want to do so badly.  So, keep your fingers crossed that we can keep him controlled during the day.  He is still having seizures when he is sleeping, but the numbers are continuing to decrease and we have had some really low number days.  We just can't seem to be consistent with those sleeping Myos and they keep hanging around, even with the recent increase of Zonegran.  We are on the 2nd week of the Zonegran increase and are still having seizures every night and nap, but maybe it will take longer?  We will keep trying and see what happens. 

We are doing much better on the diet ratios and seem to be pretty consistently hitting our goal of a 3:1 ratio (three times as much fat as carbs+protein).  We were having big problems with the numbers when he was eating hamburgers because they had so much protein so we have switched to giving him sausage patties and it is working so much better.  He still thinks they are hamburgers so we call them that so he will eat them (whatever it takes).  We are getting much more confident with the diet and it is getting easier.  He still eats very little variety so we haven't tried cooking a bunch of different things, but I hope to soon as I feel he will get sick of eating the same things.  I guess we will cross that bridge when we get to it - for now, it is working so I will take it. 

I have decided to go to the Ketogenic conference in Chicago in September to learn more about the diet and hear first hand from some of the best doctors in the country.  I had enough airline miles to get my flight for free so I'm just paying for the conference and hotel room.  There are a lot of other Doose parents attending from my online support group so I am extremely excited to meet them as we talk almost every day.  I hope I will return with so much more information and knowledge. 

I think that is all for this week - I hope things are a little more calm next week.