Sunday, October 21, 2007

Sunday night (it's hard to title these things)

Anyway, just wanted to give you an update before the week takes over. Cameron and I are flying to DC on Wednesday to meet my mom and then we are driving up to Baltimore to stay the night. On Thursday Cameron will have a Spinal Tap to rule out any issues with pressure in her ventricles. We will then fly back on Saturday. Hopefully this will help us understand why she is having these other issues.

I suspect that it is completely related to her medication Depakote which is a wonderful med I just think she is taking too much. Casey took her Saturday am to get her levels drawn and she was at 149. A therapeutic level is 50-100 and she is normally at the high end between 90-100. So this 149 came first think in the morning and she had no medicine since 6:30 the night before. So each morning if she is this high we are then giving her another dose of 375mg and I think it just hits her hard around 9:30 or 10 and causes these problems. We are going to reduce her dose tomorrow and we will see what happens over the next few days. Take care. Shelly

Wednesday, October 17, 2007

News from trip to Baltimore.

Hey, Just wanted to let everyone know that all went pretty well on our latest trip back to Baltimore. Cameron has had a strange few days with lots of nystagmus (eye movements) and dizzy spells. We do not believe that these are seizures although they do put her in a state where she does not function very well. Typically, they come on and she can sleep them off with a short nap but on Tuesday the day of our appointments, she was like this from 8:15 - 12:15. She did some work on the split treadmill and the folks in the lab were very patient with us as Cameron took two short naps during this time. It was a little frustrating b/c she was not at her best and I was so hoping for them to see how well she is truly doing. Then we were off to see Dr. Jallo the neurosurgeon and she had the same symptoms which was perfect b/c we wanted them to see in person what we were talking about. When it was time to see Dr. Hartman the neurologist she was back to being perky, happy and no nystgmus, of course. Luckily, we had recorded it earlier in the day so that they could see what we had been talking about. We also had an opportunity to see Cameron's MRI which looked great. They really removed almost everything from the right side except for a small area in the frontal lobe and an area of the occipital lobe.

The main discussion was why are these eye movements and dizzy spells occurring. They believe it can be one of three things. First, it could be something just post op caused by the trauma of surgery and it could go away. It could be medication related so we will be doing some blood work and adjustments if necessary. Or it could be that there is some pressure building up in her brain. They want to rule this last option out. SO we are heading back to Hopkins on Wednesday for a Thursday appointment where they will do a Lumbar puncture or a Spinal tap. This will give them a number or pressure level that may answer some questions. We will keep you posted upon our return.

Overall Cameron is doing so well and school is also progressing but not without challenges. It is hard for her educators and therapist at school as this is new to them and Cameron is changing all the time. The group is very dedicated to helping her to be successful and to get the most out of each day which is so important. Thanks to Cameron's Florence team. Take care. Shelly

Friday, October 12, 2007

Heading to Hopkins

Just wanted to share a success with everyone. Cameron had PT yesterday and it was amazing. Thursday's are usually her swim day's and I went in about mid-way through her session to observe. The therapist had placed four electrodes that send a small electrical stimulation to Cam's muscles, on her quad and lower leg. They had her brace off and no shoes and the girl was walking beautifully. There was barely a limp and almost no hyper extension of her left leg. It is amazing the things they come up with to help her and they are so committed to her success. Thanks, Katherine, Jenny, Carol and Pat. All of these folks that help Cameron each week are amazing.

For Cameron the first year is very important b/c the left side of her brain must learn to make all of these connections that the right side used to make. Hopefully things like this will enable her to have a very mobile life. We are heading to NOVA tomorrow and then to Baltimore on Monday. Cameron will walk on a special treadmill that also reduces her limp on Tuesday morning and then meet with the neurologist and neurosurgeon. We will update everyone on their thoughts as well. Take care. The Motts.

Sunday, October 07, 2007

Almost 4 months post op

Hello everyone. There have been so many things going on over the past couple of months that have kept us very busy. Cameron started school as you know and is doing very well. She is surrounded by a great team that is still trying to figure out how to deal with her very specific needs. Cameron spends all day in the regular classroom setting except for a small nap each morning. The teachers and therapist are beginning to come together on ways to modify her work as the pace in kindergarten picks up quickly.

Therapy in High Point also continues with about 10 hours per week and Cameron continues to make progress. She recently learned how to get up from the ground with no assistance at all, I was so impressed. Accomplishments like these really build up her self esteem and are so important.

As Casey mentioned in his last post the golf tournament that our friends had for us and that so many of you played in was a huge success. We had around 130 players and the day was truly perfect in so many ways. We had lots of family and close friends there and it was something that we will never forget. Thank you all. Earlier the same week of the golf tournament Casey's dad, Joe Mott passed away. He was ill but his death was still very hard on Casey and his brothers and sisters as they had just lost "Sophie" there mother in February. It truly was a blessing that PaPa was able to see Cameron's success before his passing.

Cameron had her first post op MRI on Monday October the 1st and I got concerned with the radiologist initial reading but we have been reassured by our Dr's at Hopkins. She has her follow up appointments next week on Tuesday and I am so excited for them to see this happy, funny and hardworking little girl that has come so far.

We also have a link to the documentary that was done on Cam's if anyone is interested in seeing it please e-mail me and I will forward it to you. This was hard to watch but truly shows the miracle that God has performed in her life. That is simply what it is.