surgery update-

Camilla was taken back to the OR about 8:30 this morning and the surgeon got started about 10:30. We are expecting about 3 more hours until she is in recovery. So far, reports are good and things are going as planned. "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

packing, preparations, people & prayers

packing - I have been packing for a week now and I still have so much more to do but I should have no problem being ready by Monday or being gone for a month. My only problem will be listening to Brandon complain about how much I pack :) preparations - From arrangements for Crosby to paying bills and cooking extra dinner to ironing Brandon's work clothes for when he's back at work and we are still at the hospital I have been very BUSY with preparations. The 'busy' has been a very good distraction though, it helps me not to dwell on the 'what ifs' of the next few weeks. people - People are already pouring out so much love for us. We have been recieving cards, letters, gifts, calls, emails, texts, etc... ALREADY and it just amazes me how people are reaching out...ALREADY. God is love and you people are definitely his hands and feet at work. I'll post pics once we are at the hospital of these but the 'well wishes' for after surgery from Camilla's classmates written on rainbows have been so moving... words written by children her age reading 'you are cured', 'you can talk to us', 'you are not scared' move me to tears every time I think of them. prayers - We already feel surrounded by and lifted up by prayers. Peace is setting in and it is a welcome friend. Thank you all and please keep them coming. We know without a doubt that these next few weeks will be the most difficult we will ever endure. We also pray that they are some of our most dear - ones in which we will see miracles take place, ones in which dreams will come true and mostly ones in which God will be glorified. Specific prayer requests include peace for all of us but especially Camilla; comfort, understanding and tolerance for Camilla; safe and successful surgeries; clear and easy decisions; and no seizures following the last surgery. Camilla - She is such a happy child. The last few days have been filled with so much laughter and other than her morning fits (she's not a morning person - she gets it from her Mommy) she is smiling and playing most of the day. Except, of course, during seizures and they are pretty bad right now. They have moved to the severe catagory and are lasting longer than usual and are very disturbing to watch even though we are only seeing 4-5 per day. We have been talking to her about the surgery and she looks at us with so many questions in her eyes as we explain things to her - especially the part about her not having any hair for awhile after this (this will be especially difficult for her vain Mommy too). Thank you all so much for your prayers and for going through this journey with us all. If you want to get my (more frequent) facebook updates you can friend me at Kelley Jacobs Smith. Schedule for now is preop work at Children's in Birmingham at 2:00 Monday and return for grid placement early Tuesday morning, resection surgery is set for the following Tuesday. "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

finally...

Finally...I am through redesigning the blog. I still have a few little things to add like the music and a slideshow of old pics but all of the important stuff is done. Whew...that was one of the BIG things on my list of 'to do's' before surgery. And yes we are counting down the days till surgery. We will leave Monday, March 19th to go up and take care of all of her pre-op work and will arrive at Children's early Tuesday morning March 20th. I will try to post a more thorough update later today. During surgeries and the hospital stay I will be updating here on the blog as well as on facebook. If you would like to get my fb updates you can friend me at Kelley Jacobs Smith. Specific prayer requests: successful surgeries; understanding, comfort & tolerance for Camilla; clarity & peace regarding all decisions to be made; no seizures following surgery. "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

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