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

medical update-

One of these days I'll find the time for a detailed update - tonight's not it - I must sleep! Today went well - we arrived at 7:30 am to find that her MRI was not actually scheduled to 10:00 am - oh well just part of it right? She was sedated for the MRI and everything was fine for that, she even slept through about half of the process of the tech putting the EEG leads on her head. The other half was typical - 2 adults wrestling her down while the tech tried her best to hit a moving target - all to the tune of screaming, crying and shouting :( After recovering from that traumatic event she was happy the rest of the day and only a little restless.

She is sleeping well now and it's a good thing. Breakfast will arrive at 4:30 am due to the fact that she has to be sedated around noon tomorrow and can't have anything to eat after 5:00 am. The first part of the SPECT scan will begin tomorrow at 8:00 am and run till noon. During this time there will be a nurse and an EEG tech in the room with us monitoring Camilla and the EEG readout. I will have to be completely focused on Camilla and when she has a seizure I will have to try to guess whether it will be one that will last long enough for the nurse to administer the radioactive tracer through her IV. We need the seizure to last for at least two heartbeats (10 secs) after the dye is injected. This will allow it to reach the affected areas of the brain. She is only allowed one injection per day and we only have three days to get this. After the first part of the test is complete they will take her down for the scans which will ultimately produce a 3D image of her brain and when overlaid with other tests they are running will highlight the area(s) of the brain where seizures are originating.

And what are hoping to gain from this? We are looking to see if her seizure activity is focused to certain areas of the brain and if so, if those areas can be surgically removed. And what are we praying for? We are praying for the testing process to be easy on Camilla, that the tests are clear and if she is meant to have surgery again she will be a candidate based on these tests and if she is not meant to then she will not be a candidate. Thank you for all the well wishes and the prayers. I will update again soon!

"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

quick update -

I have been trying to find the time to write a thorough update but tonight I only have time for a quickie ;) Camilla will spend next week in Children's Hospital. We will check in very early on Monday and she will be hooked up for a 96 hr EEG and later in the day will have a sedated MRI. On Tuesday they will sedate her for a PET scan - Wednesday they will sedate her for the first round of a SPECT scan and then sedate again for the second round on Thursday - on Friday she will be under general anesthia for a lumbar puncture - so needless to say WE NEED PRAYERS!!! I will try to update more soon!

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

medical update-

Plugging along - that's how I would describe these last several weeks - just plugging along. Camilla has started 1st grade and although there was a little bit of a bumpy transition (just in routine, seizures, rest, stress) things are really good and Camilla still loves to go to school each day. She is in a self-contained classroom for a large portion of the day but still goes to lunch, break and other activities with her class. Although we have not seen very much progress in her ability to focus, absorb information or communicate since the surgery, we are seeing GREAT progress since she has started school. Her teacher called the other day to say that Camilla had gone to the chalkboard, looked at her and said 'C' and then promptly wrote a 'C' on the board. HUGE PROGRESS! She has written the 'C' for me several times at home but I can't get her to say it. Camilla loves to swing, at school they make her say 'hi' before they will push her (this was a word that she already used and they are using it to make her communicate) and after following their lead she uses it regularly for us at home. Also, Camilla is making great strides in potty training. They are sticking to a schedule at school of pottying and she is continuing it at home. We have had several days where she has not wet a pull up and today I caught her in the bathroom, jeans down, pull up off and she was tting in the potty all by herself!

While these are great achievements for Camilla we are struggling with some other challenges regarding her development. After an intense summer of speech therapy we received her final report which put her overall communication skills at age 11 months (she's 6). Words can never describe how heartbreaking it is to see this in writing when it's reffering to your child. As long as it's not in writing or I don't have to say it - it's easy to be strong. When I see it in writing - I just try not to cry. It seems like I've been hit with a lot of that lately - whether it's a skills assesment at the pediatrician, the survey at speech therapy or all of the 'back to school' paperwork that forces you to realize your situation. And let's not forget the constant battle of avoiding all children Camilla's age - once this summer I was cornered while 3 little (adorable) girls exactly her age sang, danced and 'performed' parts of a play for me and since we were backstage while the play was going on - it was really difficult to escape all the while trying not to hurt their feelings - uuuugggghhhh! And last but not least let's not forget the telephone survey from the 'something or other to do with vaccinations' center. Well they only wanted to know about kids 12 mo to 4 years so I had to answer based on Crosby but with our experience with vaccines I was curious what the questions might be. The third one was 'has your child ever had a seizure or been diagnosed with any form of epilepsy?' From there they went on to ask all kinds of developmental questions I just grew sadder and sadder with each passing one, knowing that were they asking about Camilla my answers would be entirely different.

As for seizures, we are in a relatively good week and we are only seeing 2-5 each day. They are definitely different from before, she will freeze what she's doing and her left arm will stretch out and her head leans slightly to the left. She holds this position for several seconds and may or may not shake during this time. She seems to be only minimally disturbed following each one. Since sugery she was seizure free for 5 weeks, then had a really horrible several weeks of 15-20 per day and now we float back and forth between good (like now)and bad weeks (5-10 per day).

Camilla is set to return to Children's October 10-14 for a 96 hr EEG, PET scan, SPECT scan, MRI, lumbar puncture (redoing her genetic testing) all to see if they can locate a focal point(s) in the right hemisphere and determine if she is a candidate for ressection surgery. Please help us pray during this time, we are gathering more information and trying to decide whether to follow through with this testing at this time or postphone it for awhile. We are praying for wisdom and direction.

"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

6 years old-