Peaks and Valleys.....

Once again, it's been forever since I last posted. I'm sorry it's been so long. Our life always seems so busy plus, when I don't have good news to report, I keep putting off posting. I keep waiting so that I can report some good news and sometimes I just don't have the emotional energy to sit down and rehash depressing events and all our worries. I do promise, that from now on, I'll try to email folks and let them know when I've posted something new. That way you won't have to keep checking. Drop me an email if you want on the list.

Nine Months and still counting....

Ben is still seizing once every 1-2 weeks. We've slowly increased his depakote one capsule at a time after each seizure and just this week we added the last capsule. The depakote and zonegran meds are now back to the levels he was on when he started the diet. Even though we had a really good response when we first started the diet, I am really beginning to worry that the diet isn't going to work. If this last med increase doesn't control his seizures. I don't know what the Dr's are going to suggest. When we last saw the Dr's in Jan they reaffirmed that Ben has Doose epilepsy and that they believe the diet will ultimately cure him. They insist that it's just a matter of finding the right mix of medication and diet. Ted and I are really being to feel the stress. It's like we're running a marathon and it's all been uphill. I'm not asking for a nice long downhill but couldn't we just run on the flat for awhile. I told Ted the other day that I could do this diet for 2 years even 5 years if had the chance to settle in to it and we got seizure control. But the constant tweaking of the med and diet, with no improvement in seizures, really wears on us.
To add to the drama, Ben pulled another trick out of his bag. He started having white bowel movements on Tues (sorry to be gross, but our life is gross sometimes). He also completely lost all ketones on Tues. We kept testing his urine but he had no ketones at all. Usually he runs large to XL. Which is where we want him. He wasn't jaundiced, he felt good and was in a pretty good mood. By Tues night his ketones had come up to moderate but on Wens he had another seizure. All this past week he had intermittent white stools and low ketones. We can't figure out what's going on. His pediatrician saw him and ruled out hepatitis(liver) & cholecystitis (gallbladder). They insist that the low ketones and change in bowel movements are unrelated, that they are just occurring coincidentally but I'm not sure. Especially since his bowel movements have now returned to normal and his ketones are back up to XL. Ted and I have gone over it again and again and can't find any time that Ben got any forbidden food or any time when we may have miscalculated the diet. Even if either of those things happened, they usually only cause a drop in ketones not a complete loss of ketosis. What is also weird is that the ketones didn't drift down and then climb back up, they simply were gone, then returned at large. We even bought a new bottle of sticks but the results were the same. We're so worried that Ben might not be able to tolerate the diet anymore or that for some reason he simply can't maintain ketosis. It's funny, one moment we're complaining about the demands of the diet which isn't working very well and the next we're worried we might not get to stay on it. Can't we just have one month off the roller coaster ride?

On a brighter note....

The Sunshine state

We took a vacation to Delray Beach, Fl. It was a really great trip. We got to spend the whole week with my sister Ann & her family. My dad and David's mom & grandfather were also there. We had great weather and the kids had a great time at the beach and the pool. Ben loved walking on the sand in the surf with Ted. Grace was into digging in the sand and fearless as she is, she also got into the ocean. Here's some pics from the trip



Hopping down the Bunny Trail

We also had a really nice Easter holiday. First, my friend Dina came over to help color eggs (I can't cook an egg to save my soul. I can hard boil them but I can't do it without cracking the shells). Grace thought it was great (notice the black fingers in the pictures) but Ben took a little convincing. He was upset because I made him color eggs instead of watching Elmo. Once he colored the first one, he had a lot of fun. Easter Sunday was really nice, too. We spent the day with Ted's mom, Grandmother and his sister Ruth, her husband Kendall & their daughter Olivia. We had a beautiful day. It was sunny, warm and the flowers were all in bloom. The kids had an egg hunt after lunch and it was a big hit. All the kids found plenty of eggs but Grace kept stealing out of the Olivia's basket! I don't like to think of it as being greedy, just a little overzealous!



We know we couldn't have come this far without your love and support. Please keep us in your prayers. Pray for continued strength and optimism. We truly hope that you all are doing well and that you're enjoying the warmer weather.

Love,
Meg