Tuesday, November 15, 2011

giving thanks-

I had no idea it was going to happen last week, I was thinking January, but when I got the message on my voicemail saying that Camilla had been presented in conference for surgery last Wednesday and I should return the call I almost fainted. I just wasn't prepared to hear either way and then to make things worse I called back just as the office closed for the day. So first thing Thursday morning I called to find out that Camilla was approved for surgery and we are looking at a February or March date. Her pre-op visits will be December 12th and we will set a date at that time.

Brain surgery - you hear those words and you think 'that's as bad as it gets' and in a lot ways it is but in a lot of ways it isn't. We have had many positive things come out of Camilla's last surgery this past May; it just so happens that seizure reduction wasn't one of them so we'll try again. We have all the reason in the world to expect great things from this upcoming surgery and in a lot of ways we are excited about what it could mean for seizure control and development.

One thing this past surgery (corpus callosotomy) did was to lateralize her seizures. They are now clearly confined to the right hemisphere of the brain, even more specifically the frontal and parietal lobes. The next surgery will be a resection (grid surgery) that will identify and remove specific points where seizures originate. This surgery is more intense and more invasive than her previous one and will require a longer hospital stay. We are praying for peace and direction through this process and of course for Camilla's well-being and God's glory above all else. I will share more as we know more.

During this season of Thanksgiving I want to be sure that everyone knows how thankful I am for Camilla, how thankful I am to be her Mommy, how thankful I am that God trusted me to care for her and how thankful I am for the pure joy that she possesses and shares with everyone who knows her and knows her story...

"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

Thursday, November 3, 2011

medical update-

The last few weeks have been ok - a little bumpy - but ok. When we were discharged from the hospital a few weeks ago we left with a new med, Vimpat, and a Vagus Nerve Stimulator that was up and running again. The VNS was originally implanted in February 2009 and then turned off in May of 2010. The reasons we chose to turn it off were 1) it was never effective in controlling Camilla's seizures in fact they seemed to worsen with implantation 2) she was having MAJOR sleep and hyperactivity issues and although we still don't know for sure if these problems were caused by the VNS they did seem to begin to lessen once the device was deactivated. Now it is back on and is set to a minimum strength and frequency. I look for them to increase both settings next week when we return to redo the PET scan on Monday the 7th.

The new med is still proving to be an issue too. When she was originally sick after starting the med we reduced to a minimum dose with instructions for a gradual increase over the next several weeks. This week (after our first increase over the weekend) I got the call from school saying that Camilla was sick again and BOY WERE THEY RIGHT. She was as sick as I have ever seen her - it just broke my heart. She vomited at least four times each hour between the hours of 9:00am and 2:00pm and would not drink anything during this time. In fact all she could do was sleep for about 15 minutes, wake up to vomit and go right back to sleep. Since we have seen no decrease in seizures since beginning the med I hope they take her off of it next week. I'll take seizures over her being that sick. Currently we are seeing about 10 seizures per day mostly moderate but a few severe.

Specifics for prayers:
-that we are able to get the PET scan done Monday with ease
-no more sickness from medications
-that the VNS does not provoke sleeplessness and hyperactivity
-that the VNS will help control seizures
-weight gain

"For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11