please pardon my progress...

Bear with me...I'm in the process of trying to redesign the blog...and it is a process :)
Hitting the high notes with Camilla...she's gaining weight and her appetite seems to be improving everyday...surgery still set for March 20th...seizures are moderate to severe right now and averaging 8-10 per day...thorough update coming soon

medical update-

Sometimes I just don't feel like writing it all down, sometimes I don't have the time and sometimes I just procrastinate - lately it's been all three. No more putting it off though. Surgery is set for March 20th and time is already flying. Again, there is so much to do to prepare not only for the surgery but the hospital stay. Is is wrong to say I'm excited? There really were a lot of good things that came from her first surgery with regards to behavior and development (and it lateralized her seizures making the upcoming surgery possible where it was not before) so I'm excited about what this next surgery could bring. That being said - this surgery will be SO much more involved, more invasive, more risks, more time, etc... It is very serious and the journey to arrive at the decision for more surgery has not been as easy this time around. The determining factor - she's still having 5-12 moderate seizures every day.

"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 This verse found us during our decisions and preparations for the last surgery in May and it still pops up during the most odd and most perfect situations. This time around Romans 5: 3-5 keeps presenting itself "...but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint..." Looking forward to seeing how this verse works in our lives like Jer 29:11 continues to...

As for surgery, we will arrive at Children's on Monday, March 19 for preop work. On Tuesday they will perform the first stage of the surgery which will be to remove a portion of her skull and place grids on and into the frontal and parietal lobes of the right hemisphere (testing in Oct. narrowed to these areas). They will replace the skull but she will have wires and possibly a drain and we will be in a room where a nurse will be with us around the clock. The grids will monitor seizure activity for 5-7 days to narrow focal points to certain locations in these two lobes of her brain. After monitoring and motor mapping is complete her docs will come to us with the number of focal points and what the risks are for removing each of them (ie what do they control, how easy will it be to remove, etc...)and we will most likely have to make some pretty difficult decisions at this time. The following Tuesday they will go in and remove the areas that can be removed. We will be in the hospital 1-2 weeks for recovery and possibly 3-4 depending on the amount of therapy required for weakness of the left side of her body (referring back to the hard decisions).

prayer requests:
peace concerning all decisions
Camilla's understanding, tolerance and comfort
successful surgery
no seizures following surgery

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

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

where do I begin-

So I need to update since leaving the hospital last Thursday (only after a stop in the emergency room on the way out due to a fall). Dr. Kim started Camilla on Vimpat on Friday and began weaning Clonazepam that same day. Camilla's day Friday was good. She spent most of it resting and recovering from the week. Saturday (as most days now do) brought something we hadn't faced before. Camilla was with her Cici and Papa in Tuscaloosa when the reaction to the new med kicked in (we were warned she might be very tired but had to read from the insert about the sickness). She vomitted 3 times within the span of an hour that morning. After a quick nap (and her Daddy picking her up half way) she seemed to have recovered and was eating, drinking and playing as normal. Sunday brought a very similar situation so on Monday, upon taking her to school, I made the teachers aware of what might happen and the fact that it should start to 'wear off' soon. Boy was I wrong, after vomitting 6 times and sleeping a large part of the morning I picked her up just before noon and allowed her to recover at home. She did slowly perk up and began eating, drinking and playing by the afternoon. One thing worth noting - Camilla has lost a noticable amount of weight since her surgery in May and we are starting to become somewhat concerned about what she eats and how much of it so going several days eating very little did not help our growing concern. After emails and calls back and forth between Dr. Kim's office we were able to reduce the Vimpat dosage by half and were told to slowly work our way up over the next week.

The PET scan that we were not able to get last week during the hospital stay (because according to insurance it can only be done on an 'outpatient' status) was scheduled for today. So after arriving at the hospital at 7:30 am we were sent over to get hooked up for yet another EEG. I was dreading this SO MUCH since last week's EEG was 96 hrs. I figured Camilla would go ballistic and she started out that way but as I was explaining things to her she began to calm down (a first) and we had a great tech who was fast, gentle and who sang to her the entire time. We were done in record time and headed to a room to get ready for yet another nuclear injection followed by scans. That's when the day went south - 4 sticks to get an IV - 2 hr wait on the injection - late to pick her up for the scan - no food all day kicking in - and the machine malfuntions during the scan - we will have to redo the entire day in the next week

she just can't catch a break...

"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

medical update-

Quick update tonight because I'm sick - boo. We were able to get Camilla's SPECT scans 'with seizure activity' completed today! Thanks to all of you who were praying! At 8:14 I became so nervous because I had seen where so many people were praying for an 8:15 seizure after my joking about wanting it to be sooner than later. I was nervous due to the fact that one of the leads malfunctioned just before 8:00 which was causing the entire test to give a false readout and we could not inject during this time if she did seize. A third tech was in the room replacing the lead (around 8:15) and as soon as she did it kept detaching. It took awhile for them to get things straightened out and just as the tech confirmed that the readout was accurate and they were retaping her head she seized (8:59). The seizure itself lasted 11 seconds and we injected at 4 seconds into it - plenty of time to do what it needed to do - we were all thrilled and high-fiving like we had just won the world series. lol

Lumbar puncture around 9:00 in the morning and then we may be able to remove the EEG late tomorrow afternoon instead of Friday. PET scan still scheduled for Friday and then HOME.

Hopefully my cold will disappear and I'll feel more like blogging tomorrow. Bless you all for thinking of and praying for our sweet 'baby angel'.

"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

new prayer request-

We need seizures!!! Do you think I'm crazy yet - not quite!!! We need a good, strong, lengthy seizure tomorrow between the hours of 8 and 12. We sat for 4 very long hours today waiting on a seizure - me staring at Camilla while barely blinking and trying to hold her still, the EEG tech staring at the monitor and the nurse holding Camilla's arm in her hand with two syringes attached to her IV. The test ended at 12:00 straight-up. Camilla had a seizure at 12:07.

The day wasn't a total waste though. We were able to get the baseline scans done which just means that they injected the tracer anyway at 12:00 and we went through with the scans at 1:00 in order to have a representation of her brain without seizure activity. We have two days left to get the 'with seizure acitvity' scans. Please join us in praying for an acceptable seizure to come during the test tomorrow - say around 8:15. haha

She is otherwise good. She is tolerating the EEG well and also tolerating not being able to eat each day until after the scans at 1:00. Her head should start to itch from the leads and glue by tomorrow afternoon and will require Benedryl and lots of patience so we still have some battles to go but we are optimistic!

Thanks for all the calls, visits, texts, emails and messages. We appreciate each and every one of them. I will try to post some pics later and update again tomorrow.

"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