Celebrations Big & Small......

Happy 4th of July everyone. Sorry it's been so long since my last post. We've had a very busy summer schedule,I'm sure you can all relate.

Momma called the doctor and the doctor said.....

So our last visit to Johns Hopkins was good, bad & unexpected. The good news is that the Dr's were very pleased with Ben's annual EEG. It was a 3 hr video EEG and he only had one very small seizure on it. His baseline was even normal. So even though he has been having a seizure a week, Ben doesn't seem to have any sub-clinical seizures, or "white noise". Once again the Dr's said that they feel strongly that Ben should eventually become seizure free. Hopefully by this time next year. Ben con't to have slow but steady developmental progress. He's been going to summer school as well as music classes this summer. He really enjoys the music class and has had quite a few breakthrough moments (he actually "played" the piano and sang "Twinkle twinkle" little star from start to finish. He never missed any of the words). It was a really nice moment.

The bad news is that the Drs were unwilling to let me titrate Ben's meds in order to get seizure control. (I asked them to give me the upper limits on his meds as well as a titration schedule and I'll increase as needed and let them know how it's going.) Even though I'm a critical care nurse and titrate cardiac and other life support meds on the weekends. Dr R said no. He said "I'm a little old fashioned and want to keep a close eye on things" I said ok, but if you're going to micro-manage his care, I expect better response and availability via phone & email. He promised me again that he would improve. We'll see. The other bad news is that they won't see us any more frequently than once every six months. So, even though Ben's still having seizures, his lipid panel is 3x the upper limit of normal and he's been having white stools,they feel extra visits aren't necessary. I wonder what you need to do to warrant extra visits?

The unexpected. The Drs feel that Ben's white stools are happening b/c he occasionally is overwhelmed by the amount of saturated fat in the diet and can't break it down. This causes him to lose fat in the stool (thus, they're white) and drop his ketones. This is a theory I had from the beginning but the JHH Drs didn't give it credence until Ben's pediatrician suggested it to them. And I'm the one who gave the pediatrician the idea. I guess MD's speak a different language to each other!

Anyway, the Drs said they have never seen this happen with one of their kids. They are considering putting Ben on MCT (Medium Chain Triglyceride)oil. This oil replaces the fat (e.g. butter & cream) in the diet. They have never done it before at the clinic but it is the primary form of the diet in Canada & Europe. If they do switch Ben to the MCT oil, Ben would not only lose some of his food but he would lose most of his favorites, eggnog, egg custard, waffles, ice cream, butter lollipops. It will take JHH a couple of weeks to research the changes in the diet and come up with an alternate menu for Ben. In the meantime, Ted has created new menus and changed as many of the old ones as possible in order to increase the amt of unsaturated fat in the diet instead of saturated.(we're hoping that if the white stools stop, we won't have to switch to MCT oil) Basically it means olive oil, mayo & nuts instead of butter & cream. We've come up with some yummy meals. Chicken Waldorf salad, bacon & applesauce with maple flavoring, eggplant parmesan & avocado & bacon.
So for the keto cooking gang, we won't be having another cooking session until the Dr's decide if we need to switch his diet. It may be we'll all get together and just do snacks. They haven't changed and Ben goes through them faster than any other food.

Here comes the bride.....

The first weekend in June we went to Virgina for the wedding of Ted's cousin Ashley. We had a great weekend. It was really nice to see all of Ted's family and spend time together. Grace was in the wedding and she looked beautiful.



Ashley had asked if both Ben & Grace could be in the wedding but we decided against having Ben participate. I just didn't want anything unexpected to happen and disrupt Ashely's big day. Gracie did a great job during the rehearsal. She waked down the aisle slowly and smiling the whole way. She must have done it 6-7 times. The next day, when the big moment came, she stood at the top of the aisle, took one look at her dad and crumbled into a big pile of white dress. She looked like a big s'more minus the chocolate! She never cried. A family friend quickly walked up,took her hand and Gracie stood up and walked down the aisle without a complaint. She was adorable. It was really nice to spend the weekend focusing on Grace and a little less on Ben. It reinforced how much time we spend with Ben and how we need to try to balance our time & attention between the two of them.

A Pirate's life for me.......

The week after the wedding. We celebrated Ben's 5th birthday. Ben has been a big fan of the movie Pirate's of the Caribbean (and good mom that I am, I actually let him watch it, skeleton's & wooden eyeballs & all!)So we went with a pirate theme for the birthday party. It was a big hit and Ben had a great time. I don't know if I've ever seen a pirate with a Dora the explorer swim vest! Ben was a riot!



This was Ben's first birthday since starting the diet so the cake was an issue. My friend Dennis came up with a great idea. He made a "cake" by decorating an upside down box,he did a fantastic job and it looked great! We then filled the box with wrapped birthday presents. So we brought the "cake" out and sang happy birthday. Ben blew out the candles we lifted the box and there were all the presents. The look on Ben's face was priceless. (You can see it in the pics). We then handed the presents out to all the kids so they could help Ben unwrap them. It was a big hit. Everyone had a lot of fun and I don't think Ben even missed eating real birthday cake. I saved the "cake" for next year. We'll definitely do it again, just redecorate for next years theme.

Happy 4th of July......

We are currently at my mom & dad's place at the lake. We drove through the night, which wasn't that bad, so we could celebrate the 4th at the lake & see the fireworks. The only screw up was that in our hurry to get out the door Thursday evening we left the bag with Ben's seizure meds at home! (It was a case of I thought Ted had it, he thought I had it, yikes!) We had his diastat but nothing else, and of course, it being a holiday, I was in a real panic. Luckily, it all worked out. We were able to find a local pharmacy that was not only open but they had both Zonegran & Depakote in stock. So the on call Dr @ JHH called in prescriptions. My mom & dad were also able to get prescriptions from my Uncle, get them filled in Uniontown and bring them over to us. Finally, Carrie, who is staying at our house, ran out and Fed Ex'd the whole bag we left behind. We should get it Monday. Everyone was awesome and really helped us out. We never even missed a dose! Lesson learned: We got a bright red backpack, all the meds will go in the backpack and we will always make sure it's in the car before we go.

We'll spend a few days at the lake and then travel to State College for the rest of our vacation to stay with my sister Ann and check out the Penn State Arts festival. Always a great time. It'll be a really nice vacation.

We hope everyone has a wonderful 4th of July and that you have a terrific summer. Filled with happy days and many joyous celebrations, both big and small.

all our love,

Meg & Ted McDaniel