1p36 trip to Wisconsin

Miss O's chromosome abnormality is called 1p36 deletion. 1p36 deletion support & awareness hosts a conference every year for families, and we move it around the country so that everyone has the chance to attend. Two years ago it was in Boston, and we were able to go. Mike travels to Boston to work fairly often, so he scheduled one of his work trips around the conference weekend, and the girls and I flew there on Angel Flights. It was a great time, and really wonderful to learn more about 1p36 deletion, and meet other families. This year the conference is in Salt Lake City, and we just cannot make it. So one of our Wisconsin friends scheduled "1p36 Fun Days" in Madison for those of us in the Midwest who can't make it out to Salt Lake City. The kids really did very well on the ride there and on the ride home. Ato T was really stressed out being away from home for that long, but did quite well considering the circumstances.

The girls and daddy watching TV in the hotel room.

Ato T napping while the girls and daddy watch TV.

Picnic fun by the lake!

Miss O and her friend Jordy.

Jordy is the other child with 1p36 deletion that lives in the cities, and they were able to come as well. What's amusing about the weekend is that we ended up being the only 2 1p36 families to come with our kids. The 2 families that live in Wisconsin both ended up with very sick kids on the day we got together. We're hoping to try again here in the cities sometime in August. For those of us who were there, it was a lot of fun!

Independence Day

We had a nice, relaxing July 4th! Grandma Lynn and Grandpa Bob came over for lunch and the afternoon. We grilled hot dogs and had baked beans, fresh picked strawberries, lettuce salad and chips. It was nice to have a meal that didn't take too much effort to make, and didn't have way too much food. After the kids had quiet time we headed outside to play in the pool and have a lemonade stand. Mommy provided quarters for all the grown-ups to buy lemonade from the kids. It was nice to have our first lemonade stand in our own back yard. :)

Ato T helping daddy set up the lemonade stand.

Ready for business!

First customers.

Stand manager working hard. :)

"Napping" with daddy in his father's day gift. (I don't think daddy got much of a nap!)

Swing time with grandma comes with perks of singing fun songs!

I love that face!

The seizure saga continues

Well, it's official that Ato T is having Tonic seizures. He has between 3 and 15 a day now, but they are thankfully short and not violent. They do however, make him tired. So he has been sleeping more than usual lately. We met with his Neurologist on Friday, and will be starting him on Keppra this week. From what we understand, there seems to be no exact science to figuring out what medication and how much will help him with his seizures. So, we're praying the first one takes and works well without side effects. We're blessed with a Neurologist who also believes that if a medication is causing side effects that interfere with daily living. Even though this is stressful for us, we are so thankful, because it could be so much worse. Thanks for all of your prayers!

Like father, Like son

Grandma and Grandpa come over for a visit one afternoon, and it didn't take long to notice the similarities Mike and his father share. :) It took some convincing, but I felt like I just had to take a picture.