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

Friday, January 19, 2007

Heading north.........

Hello all!!

We are leaving for NOVA tomorrow to stay at Shelly's parent's house. Sunday night we will stay with a very nice family whose 16 year old daughter had the surgery we are considering when she was 3. Our appointments at Johns Hopkins are Monday & Tuesday--on Tuesday we will have time to go to the aquarium and do other fun stuff at the Bay in Baltimore. These appointments should give us the information needed for the decision to have surgery now or not and when that would be scheduled. We will be back in the Triad late Wednesday so pretty quick trip this time. Thanks for all your prayers and concern for Cameron--she is a super sweetheart and we hope to get some conclusion for her future with this trip.

take care, Casey

Friday, January 05, 2007

Hello, Casey posted some family photos from our holiday beach trip. As you can see Cameron was very active and had a great time. Kitty left behind some candy canes for us to enjoy and Caroline found them and unwrapped the one she is enjoying right away.

Cameron is now going to speech thearpy four days a week and ot once a week thanks to Cap C. She is really doing very well and meeting goals at most appointments. Cameron's seizures have returned as we knew they would so it has been a tough week for her. Yesterday required three uses of diastat which is a strong medication to supress or stop the seizures. Today has been a much better day and she has been seizure free. We are officially in countdown mode for Hopkins. We will keep you posted. Much love, The Motts.

Monday, January 01, 2007


Hello, hope that everyone had a great time this holiday season. We actually went to the beach thanks to the Simmons family and their beautiful home. It was a perfect time as Cameron was really seizure free and she was able to run and play helmet free on the beach. My parents, sister and niece joined us as well and the time flew by quickly. As you know I did not get out X-mas cards so I am going for the new years card instead, we shall see.

Our little break from seizures has ended as Cameron had three drop seizures on Saturday and Sunday morning she started off with a more severe but short seizures that consisted of very rapid shaking all over her body and head. Neither of us had witnessed this type before but they are always changing. That first seizure got her on a bit of a pattern and the day was a little rough for her. The same thing has already happened this morning so not sure what the day has instore for her.

The Depakote has been a blessing in many ways for Cameron. Over the past week Cameron started speaking in 5 and 6 word sentences and then it moved up to 10, 12 and even more on some occasions. This is great because Cameron normally was talking in 2 to 3 word phrases and they were often not clear. This made the doctors think that her speech had been destroyed or that she could have this rare form of Rasmussen's on both sides of her brain. The important thing is that she does have her speech and her congnitive awareness has also improved. This tells me that her previous medications were really putting her in a fog. I am very excited to get back to Hopkins to see what the doctors say now. January 22nd could not get here soon enough. Many thanks to you all for the continued prayers and kind gestures. All our love The Motts.