Tuesday, April 29, 2008
Sunday, April 20, 2008
The boys are doing well. They love to wear matching clothes, so this spring I went to Target and just grabbed two of everything they needed.
This picture was taken right before I took Seth in for his "spring haircut." I'm sorry I don't have an "after" picture. I will work on it and put one up later.Noah lost his first tooth! It was quite exciting for all of us--another sign of him growing up. He put the tooth under the pillow and then mommy and daddy switched it out with two new books for him.Adam's parents are in town for the weekend. They chose a good one, because we have much better weather here than in Chicago this weekend. They were outside with the boys most of the day yesterday, working in the yard.
Wednesday, April 9, 2008
As we had heard several times before Ellie's case is complicated and severe. The Doctor did a physical exam of Ellie and asked us a lot of questions about Ellie and her story. He then collected all of Ellie's reports, labs, and films and went back to his office to digest everything and consult other specialists. Upon returning he described what he thought may be going on with Ellie.
Going to Cleveland we had an idea of what may be going on after a very good meeting with our neurologist at Devos Childrens earlier this week. But we did not share this idea with the neurologist in Cleveland. We didn't want to influence his opinion. When he was describing what he thought might be going on with Ellie, both Emily and I were nodding our heads. He stopped and said, "You have heard this before haven't you?" We acknowledged his hunch and he responded by saying, "You were going to make me work for it weren't you?" Absolutely, no free ride here!
So, the theory today is, that Ellie may have a problem with her peripheral nervous system as opposed to her central nervous system or a muscular dystrophy. The most helpful pieces of the puzzle that helped them to consider this area were her physical exam, MRI and EMG. There are a handful of disorders that could be causing this, all extremely rare. They can be tested for with a blood test, and we hope to pursue that here in Grand Rapids.
The Good thing about Cleveland was that we were able to get a second opinion on Ellie's case. As a bonus, both opinions matched. It also affirmed our confidence in our neurologist here in Grand Rapids, who has taken an interest in Ellie and is deeply invested in her case.
Thank you for all of your prayers and support this week. Cleveland was not an "ah hah" experience, but it was worthwhile, and it confirmed a direction that we were heading. We can already see God's hand in why our original trip to Cleveland was delayed. It is comforting to know that we sit in the palm of His hands and under the protection of His wings.
We will keep you posted as this unfolds.
Tuesday, April 8, 2008
Tomorrow we have an appointment at Cleveland Clinic in Ohio. We are hoping that this will be a worthwhile trip and that we can learn more about Eleanor's condition. Please pray for us tomorrow morning as we meet with a Neurologist there. This trip may be one meeting or many depending on the outcome of our appointment on Wednesday morning. We will update everyone when we learn more.
Friday, April 4, 2008
Tuesday, April 1, 2008
We are so happy to be home. Thank you for your prayers.