Friday, January 26, 2007

back in the good 'ol south :-)

We got back from Baltimore and NOVA on Wednesday. Overall we had a good but exhausting trip. Sunday night we stayed with the Miller family outside of Baltimore and met their sweet 16 year old daughter Jody. We enjoyed our visit with them and Jody & Cameron had fun with all of Cameron's demands to play. Jody has done well since the surgery she had at almost 4 and is a junior in high school in the middle of exams. We watched her dance video and she has way better skills than either Shelly or I. Monday was full of evaluations of Cameron's speech & physical skills at the Kennedy Krieger center. This is were Cameron will have therapy if we have surgery and we were highly impressed with everything there especially the people. Tuesday morning was more of the same there testing motor skills in the occupational therapy part. Cameron had a couple of spurts of difficulty in all of that but overall she did great and of course everyone loved her sweetness. For lunch time Tuesday we went to have some fun at a place call Port Discovery--a 3 story Children's Museum with a climbing tower in the middle going all the way to the top. Cameron had a great time and we can't wait to take Caroline next time we are there. Then back to the hospital to meet with the doctors. After the looooooooooooooong wait we finally got in the meet the surgeon (Dr. Jallo) which was very brief and then we were back in the lobby waiting again. It was good to meet him and he seemed like a nice man but we were disappointed with what seemed like a waste of time. Finally we did get in to see Dr. Vining and they were highly impressed with Cameron's improvement in skills since the last time we saw them. We all agreed to about a 50-60% improvement in her overall condition so that was good. Basically at this point surgery is on hold until we do another EEG monitoring visit. We will probably go back up to Hopkins in February to do this and that is a 2-3 hospital stay. We plan on taking Caroline with us to Baltimore this time and hopefully stay at the Children's Center--a $20 a night place for families right accross the streat from the hospital. Surgery is still a high probability but we will know for sure in a month or so. Another option of treatment is a chemo drug called Citoxin--we will look into this as well. Thanks for all of your prayers--they are working as Cameron is definitely back with her bubbly personality that we had lost back in the summer. God provides us with miracles if we keep the faith.


take care,

Casey, Shelly, Cameron & Caroline



2 comments:

andrea said...

So glad to hear that about Cameron's improvements! That is such a blessing. And glad you guys made it back safely, even if you still don't have a definite answer about surgery. Hope things go well with the next EEG eval.

Can't wait to see you next week!

Andrea

Kristine Koeppe said...

Cameron, you now have another family of 5 praying for your progress, keep on fighting! Shelly & Casey, thank you for sharing her blog w/ us. We are thinking about you & your family. All the love people have for your family can only help you get through this. Talk to you soon & good luck with the next round of evaluations. All our best... Kristine, Adam, Shane, Jake & Skylar
PS- love the pictures, you have a beautiful family