Camilla

medical update-

2012-01-18T19:22:00.004-06:00

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-

2011-11-15T19:53:00.003-06:00

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-

2011-11-03T21:05:00.002-05:00

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-

2011-10-19T22:19:00.002-05:00

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-

2011-10-12T20:38:00.002-05:00

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-

2011-10-11T19:09:00.002-05:00

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-

2011-10-10T22:04:00.002-05:00

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 -

2011-10-05T20:00:00.002-05:00

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-

2011-09-15T21:13:00.002-05:00

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-

2011-08-26T21:39:00.001-05:00

the beginning-

2011-08-17T00:48:00.002-05:00

**the following post was started on Camilla's birthday and I've just now had time to finish it**her birthdays are always tough days for me**it's so easy to remember how happy things were in the beginning

I remember the day so vividly - August 14th, 2005 - after 14 hours of labor and a normal, happy, healthy pregnancy and birth my little girl was finally in my arms. At 6 lbs 10 oz she was a tiny bundle of joy and I just couldn't hold or look at her enough. Camilla was a very good baby. We had no major issues with sleeping, pooping or feeding and she was just one happy little girl who was healthy and hitting all developmental milestones - until 6 months old. Looking back now those first six months hold some of the most precious memories and best times of my life.

When she was almost 5 months old she developed an ear infection - no biggie. We saw her pediatrician and he put her on antibiotics. The ear infection rocked on for several weeks but then at her six-month check up her ears were fine. We got a clean report and our shots and went on our merry way. Within the week Camilla began making these 'jerking' movements that would come in clusters. During the clusters her arms would both 'jerk' straight from her sides and her head would 'bob' slightly. Within the first couple of days of starting there were 8-10 'jerks' in each cluster and she was having about 10-12 clusters per day. At first we thought the jerks might be 'ear pain' (maybe the infection was back) because after each one she would put her hands on her face or ears and she would cry as if in pain. After a call to the ped he gave us some numbing ear drops and told us to use them when the first jerk began. After a couple of days we could tell the drops were providing no relief and the jerks were increasing so back to the ped we go - that was April 1st. After describing more details of the clusters and including that the drops were not helping our doc became immediately concerned. I will never forget the look on his face the first time he said the words 'possible seizures.' He recommended we go for an EEG - we could wait a couple of weeks to get into Children's or we could be in with a local pediatric neurologist the next day. We met with Dr. Syed the next morning who, after describing her symptoms, got on the phone to DCH and went ballistic on them when they could not get her into an EEG that day - that was April 2nd. So one more day to wait on the test. The morning of April 3rd we were at DCH for a 6 hr EEG - what a nightmare it was hooking her up for the first time ever - it's the only time we've had to use a papoose board. So 6 hrs later we are getting ready to head home - it's about 3:00 at this point - we assume we'll get a call tomorrow with the results and we are planning where to grab a bite before we make the trip home. As we are about to leave a nurse comes in and says that per Dr Syed's request the test results have already been emailed to him, he has reviewed them and he wants to see us in his office immediately. We drive a very silent drive across town to his office at the Northport DCH and are greeted at the door to his now closed office by a nurse. She takes us straight to a room where Dr. Syed is waiting on us.

Of course we are petrified by now - we knew it had to be bad - no one gets this type of treatment for things that are going to be ok - we had not spoken a word to each other or to Camilla for that matter - I sat shaking in the chair with Camilla on my lap while Brandon was in the chair to my right - and then came those words - "your daughter has Infantile Spasms, she will probably never walk or talk but the good news is that it's not fatal" - from there I just remember Brandon catching Camilla as I was close to collapsing on to the floor - I'm sure there were questions that followed and I do remember him taking us back to his office to let us look at the EEG and the 'tell-tale' hypsarythmia but I mainly just remember him leading us down a back stairwell to our car and giving us instructions on what to do once we got back to DCH to admit Camilla indefinetly.

I remember that drive back to DCH, one of those memories that haunts your dreams. It was so quiet except for tears and one cluster of seizures that Camilla had on the way - almost like they were rubbing it in. I'll never forget the memory of feeling like we had left his office with a different child than we took in there. 3 days - that's all it took to turn our lives upside down. EVERYTHING was FINE, EVERYTHING was NORMAL - until it wasn't - 3 days.

Below are some pics taken during the first six months of Camilla's life...

medical update-

2011-07-31T00:59:00.003-05:00

So much has been going on lately with Camilla but I will try to give a quick update concerning her medical situation. Seizures continue and are now pushing 15 per day, they do seem to be worsening just a little with each passing week and her focus, hyperactivity and behavior problems seem to be worsening as seizures increase. Sleep is being interrupted during this time as well. We have also seen an onset of shaking - we don't know yet if it is medications, seizures, or ???? but Camilla is very trembly all the time - even to the point of no longer being able to grab something from someone's hand and not wanting to feed herself because she can't hit her mouth. Dr. Kim is currently increasing Lamictal, decreasing Depakote and considering the addition of Vimpat.

We have decided to move forward with the hospital admission in the fall that will work to find a focal point for the seizures. It would be a week-long admission to Children's and the tests we know of so far would include - MRI, SPECT scan, PET scan, lumbar puncture and an EEG for the length of the stay. These tests would decide if there is more surgery to follow. We are waiting for dates for this admission.

As for details on everything else - I'm just not in a place that I can tackle those emotions and realities on here right now - sorry. Maybe 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

manic monday...

2011-07-12T20:56:00.002-05:00

...because that's what it was! What a nightmare that day turned out to be - I don't even like thinking back to that day it was just so horrible for so many reasons!

Here's the day that we had planned:
9:30a arrive and Children's and get hooked up for 2 hr EEG
11:45a appointment with Dr. Kim (neurologist) to get results of EEG and talk about new plan to treat seizures with VNS, meds, etc...
1:00ish grab some lunch then head to Alabama Adventure to ride some rides then hit the waterpark

Here's how the day unfolded:
9:30a arrived at Children's
12:15p finally called back to get hooked up for EEG
1:45p unhooked the EEG early
2:00p lunch at the hospital cafeteria
3:00p appointment with Dr. Kim
4:30p left hospital
NO Alabama Adventure :(

Well, I certainly wouldn't have won any popularity contests with the staff at Children's on Monday but they (of all people) should know that you don't keep special needs children (families) waiting almost three hours without letting them know what is going on. If they had only told me that there was another child in the room Camilla was scheduled for we could have made much more exciting plans than terrorizing the waiting room. Once we were finally called back Camilla was in 'rare form' she was starving because it was now time for lunch, tired because we had woken her up early(so we wouldn't be late-insert sarcasm here) and already ill because she had been confined to the waiting room and had gotten in trouble like 25,000 times that morning. So now imagine having to hold her still in order to glue about 12 leads to her head!!! They would only allow one parent in the room so I had to hold her while the EEG tech put the leads on (you may remember from previous posts that Camilla has the 'gift' of superhuman strength) - I had to pin her arms by her side with legs straight out while lying on a bed, then I had to lay on top of her and push my head up against hers so she wouldn't shake her head continuously and all the while trying not to hurt her in this process. With 3 leads left to go Camilla finally passed out from exhaustion (and I almost did too). During an EEG they try to get the child to sleep so that they can see both the sleep and wake cycles. Camilla slept for about 20 minutes and woke up in a much better mood. She was very active for the remainder of the test but managed to only pull out 3 of the leads after an hour and a-half at which time the tech decided she didn't want to try to reattach the leads so she called Dr. Kim to see if she had enough info already - which she did and the test was over. Let me not forget to mention though that during the test the tech decided she was going to eat a candy bar - now keep in mind it is now almost 1:15 and Camilla has had no lunch and the tech will not allow her to have anything - let's just call this the time when the 3 leads were pulled off and Mommy took the candy bar away from the nice lady and put it in our bag for Camilla to have later :)

So after that ordeal was complete we all managed to stumble our hungry selves down to the cafeteria just as it was about to close for lunch (why don't hospital cafeteria's stay open all day - uuuuugggghhhhh - don't even get me started on that). Immediately following lunch we made our way to the clinic to see Dr. Kim. She had obviously heard how our day was going and was there waiting on us when we arrived. We had an extensive and good meeting with her and we were able to get so many questions answered and learn of all of our options since seizures have returned. Let me remind everyone that the docs never expected this surgery to 'cure' her seizures - this is considered to be a pallative surgery - so to them the fact that she went 5 weeks seizure free was fantastic. And we consider it fantastic too, but we also consider it a great dissapointment that they have returned with the frequency and severity that they have. She is having on average 5-15 per day and they seem to be presenting on the left side of her body. Dr. Kim agreed that that was too many seizures and that our #1 goal is still to stop all regular seizure activity.

After reviewing the EEG she found the left side of Camilla's brain to be clear!!!! That was fantastic news - in the past Camilla's seizures were so generalized that no focal point could be found on either side of the brain and once they did start they would rapidly spread to all points on both sides. She noted that the right side still has a considerable amount of activity and that is def where the seizures are coming from and why they are presenting on the left side of her body.

The next steps - Dr. Kim adjusted her current medications and we will continue to monitor her seizures for the next two months. After that time we will see Dr. Kim again and unless seizures have ceased we will schedule a time for Camilla to return for a week-long hospital stay in which she would undergo EXTENSIVE testing to see if they can find a focal point on the right hemisphere. If they are able to do so we would then consider ressective surgery - in which they would go in and actually remove the parts where seizures originate. This type of surgery is often referred to as a 'grid surgery' and is MUCH MORE involved and serious than her recent corpus callosotomy. I'm still a little in shock over the fact that we might have to consider another surgery but Dr. Kim told us not to be afraid of another surgery and that we are 'chasing' the seizures. If they are unable to find a focal point during the testing then we will continue to unsuccessfully control her seizures with her VNS and medication. I'm just a little numb from all this news...

We covet your prayers right now - we need them right now - I don't even know specifics to ask for you to pray about yet - we really are just numb and in shock -

I do want to thank all of you who continue to reach out to us in various ways - it is really amazing how you guys seem to show up with meals, cards or words of encouragement at just the right times. We are forever grateful for all of you who have prayed us through these moments of difficulty and weakness. YOU ARE APPRECIATED!

Apparently, God isn't finished with us yet...

"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

recent pics-

2011-07-10T23:37:00.001-05:00

tests, tests & more tests

2011-07-10T21:40:00.002-05:00

Tomorrow we will head back to Children's again for Camilla's first post-op EEG. This test (for those unfamiliar) measures her brain activity and should give us much insight into what is going on in that pretty little head. We are still seeing seizures everyday and they seem to be slightly increasing in severity and frequency with each passing day. This test should tell us the number of seizures she's having on average each day (seen & unseen), how severe they actually are and what parts of the brain they are originating in. Please pray for safe travel and a positive direction based on the test results also that we get finished quick because we are headed to Alabama Adventure afterwards! Camilla can finally get that head wet!

Our last visit to Dr. Blount was a good one. Her incision looked much better and he said we were all clear - he didn't even schedule a follow-up. I'm kinda going to miss him (at least for a little while)- he's one of the few specialists that doesn't treat you like a patient - he realizes he's dealing with your whole world and he acts likes it!!!

We do continue to see small changes in Camilla: she tells most everyone 'hi' and 'bye' when we meet or leave people and sometimes even over the phone - she is attempting some new words - she will stick her tongue out if you ask her to - her appetite is much less than before surgery - hyperactivity continues to improve each day - she is still sleeping through the night - 'potty' issues and bedwetting are slowly improving - she LOVES books now and isn't quite as destructive to them - she is grinding her teeth again:( - she has developed the horrible habit of biting the skin on her fingertips - she is making strides in assisting with dressing herself - the other night after taking her medicine she went and laid in her bed and fell asleep (this has never happened - we always have to hold her to keep her still long enough for her to get tired and then we carry her to bed) - she still loves to screech LOUDLY and I'm sure there are many more things I could list but those are the highlights for now - good and bad!

We continue to go to speech twice a week and physical therapy once so we are still very tied up with the traveling we have to do each week. Between these appointments and the trips to Birmingham for docs we are rarely home and it is starting to wear on us all. The kids sleep to 9 or so each day that we are home because they are so exhausted from having to get up early and not get back till late and constantly being on the road - and in a loaner car at that! My car had to have some major repairs and it is going on 5 weeks now that I've had a loaner but on the bright side this little car gets better gas mileage than my SUV and with all the traveling we've been doing it has been easier on the pocketbook :)

I hope to post pics from the waterpark and results from our test in the next day or so - so check back soon. Please continue to pray for Camilla - it is so comforting to know that at times when I'm frustrated or confused and don't know what to pray for her - that others do. Thank you for that! Even though we do have questions we know that God has brought us this far and that he's not going to give up on us now. "For I am confident of this very thing, that He who began a good work in you will perfect it until the day of Christ Jesus." And thank you God for that!

the pics from surgery-

2011-07-10T21:32:00.002-05:00

I know it's taking me forever to get caught up but here are the pics from surgery-

relapse-

2011-06-30T22:41:00.002-05:00

Heavy is the heart that has to write the word relapse but that is where we find ourselves tonight - relapse. After about a week of denying the 'funny jerks' or 'odd shakes' there was no denying the cluster of four seizures that I saw this morning. We were sitting in Jack's eating breakfast just Camilla, Crosby and I as we were about to head to Tuscaloosa for speech therapy. I'm almost glad that we were in a public place and I couldn't break down and scream and throw things like I wanted to but then again I must say that it just seemed too cordial a greeting to quietly throw my trash away and gather the kids and leave with tears streaming from my eyes. All day long I've tetered between really not being suprised by this relapse at all and being completely broken. Thank God that -at this time- they are not affecting her as they did before. They only seemed to engage her right side although I think her entire body tensed during the events but she had no post-ictal state where before she would run, cry out, and act as if she were scared or in pain. She just gave a little smile and looked at me following them and then went about eating as if nothing had happened.

Her first post-op EEG is scheduled for the 11th but we will see Dr. Blount (neurosurgeon) tomorrow at Children's to check on the incision. He will most likely have plently to say about the relapse and what possible options, treatments and recommendations he would expect from Dr. Kim (neurologist). As for the incision it is looking much healthier as a whole; however, we are still very concerned about the original one-inch section that has remained problemsome. Brandon is scrubbing her head every night to completely remove the scabs and it is a very upsetting process and seems to be very painful although Camilla is handling it like a champ. We will see tomorrow if we have done enough for it to heal on its own or if he will choose to take her back to the OR to care for that one spot.

We continue to travel to speech therapy twice a week and although it is going well - it is just going very SLOW. Same thing goes for physical therapy - although she is no longer locking her left knee when she walks (developed post op). We are also in the process of making decisions regarding the upcoming school year and are very apprehensive at this point that we are making the best decisions for her.

As for our next step - who knows???? I'm going to play Scarlett on that one - "I can't think about that right now. If I do, I'll go crazy. I'll think about that tomorrow."

Update to follow soon - I will leave you with several positives:
-Camilla said the word Jesus this week and kissed his picture while we were reading her 'Jesus Loves Me' book (it sounded more like CHE-ta but there was no doubt what she meant)
-Camilla was able to sit through the entire movie 'Cars 2' this week - this would have NEVER happened before due to her hyperactivity - we never even once had to take her out and let her run around and come back or anything - she just sat and ate her popcorn and wasn't loud and only stood up two or three times but never tried to leave her seat - AMAZING
-Camilla has slept through the night for the last several weeks - everyone at this house is feeling better and so thankful (I hope I didn't just jinx tonight)
-Camilla has not wet the bed in the last week - I can't remember when was the last time that happened

Although we are very frustrated and deflated at this point and we are wondering how this relapse fits into God's plan - we know it will. We trust HIS will -

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

another quick update-

2011-06-20T23:06:00.003-05:00

Hoping to have the time soon to fully update on Camilla's progress and post some new pics and video but for now I hope you'll settle for a quickie update. We do NOT have to go to the OR to resolve the issues with her incision (at least not this week). Dr. Blount believed that it was showing some signs of healing but warned us that progress would be SLOW and we are still not off the hook with the OR. He wants to see us again next week to be sure that things are still headed in a positive direction. Today he talked like if they did have to take her at this point (or next week) that they would put her to sleep long enough to scrap off the scabs that have formed and clean it thoroughly. There are still no signs of infection but they are being very cautious - which we are thankful for - I still have to clean the incision twice daily.

Thank you all again for your prayers. They ARE being felt and answered - God is listening. Thanks too for the well-wishes - they continue to encourage and strenthen us each day. And another thanks for the meals that continue to come - with the two trips to Tuscaloosa and one to Birmingham per week for the last three weeks I haven't had the time, energy or desire to think about food - what a relief it has been to have a warm and delicious dinner delivered most every afternoon :)

Please continue to pray for healing - for seizures, for the incision, for development. Also for safety as we travel to and from therapy and visits. Her first post-op EEG is scheduled for next week - pray for this too - we want a clean report. We continue to have seizure-free days but we want to see the 'normal' EEG with our unbelieving eyes and our scared hearts. I don't know why we continue to doubt and live in fear of seeing another seizure - God let us know awhile back that He had great things in store for Camilla - pray for us too - God has been faithful - pray for us to be as well.

"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-

2011-06-14T21:09:00.002-05:00

I don't have time for a thorough update tonight but I want to put out a request to all my praying friends. We returned to Children's again today for the second wound check on her incision and didn't get the report we were hoping for. They are still concerned about the way it is healing and although there are no signs of infection at this time they are concerned that this may become an issue. We now have to go from cleaning one spot on the incision (about 1 inch) twice a day with hydrogen peroxide to cleaning the entire cut (about 7 inches) three times a day with soap and peroxide in addition to washing her hair daily to clean it. Please pray for these cleanings because they are painful for her - it is difficult to hold her down to do them and the soap and peroxide obviously burn or tingle - she is also not very happy with me at all right now because I have to do the majority of them since Brandon is working out of town.

We will return to see Dr. Blount on Monday for the next check and he told us today that if it is not better or if it is still 'headed in the wrong direction' that he will take her back to the OR to clean and restitch the wound (most likely Tuesday). PLEASE PRAY that she does not have to go back to the OR for this and that we can get it turned around this week. I'm so scared that if we put her body through the trauma of another surgery that seizures might return - and we have been four weeks without seeing ANY!!!! I also just don't want to see her have to endure any more pain or any setbacks!!! We know how powerful prayer is - we have felt it through this whole process and right now we COVET your prayers.

More details to follow 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

in the right direction-

2011-05-29T23:12:00.003-05:00

We seem to be moving in the right direction. In general things are improving each day. Here are just a few examples:

-she seems to be processing faster- before she took so long to process things that most of the time we would just give up and do something for her or to her in order to get it done (ie telling her to put her socks on or handing her something - most of the time we would just have to put the socks on or grab her hand and put something in it because we couldn't wait the 2-3 minutes it took for her to process what we were saying) *I promise I pray for patience everyday* now she will do some of these requests or commands almost immediately (maybe 10-30 seconds)

-affectionate- she is hugging and kissing on us constantly whether we ask her to or not and we ask A LOT! IT IS WONDERFUL!

-following simple commands- we are noticing that she follows commands after only telling her one time (ie getting dressed I used to would have to hold her shorts in front of her and say two or three times to step in and then I'd have to tap her legs, now she typically steps in before or on the first time I say it) going back to the processing

-more aware- now she just generally seems to be a little more aware of herself in the world especially as it relates to others (ie she doesn't run into as many people or things as before and she is anticipating some actions and events that are familiar or routine)

-potty- this one has to be my favorite after the hugs and kisses - although we have been trying to potty train for at least a year now she has never really 'gotten it' she will go if we take her and remove her pull up and tell her to sit and go; however, due to her limited language capabilities she has never been able to tell us when she needs to go (we have tried signing, different words, pictures, taking her every 20 minutes, etc...) three times this past week she has let different people know (in various ways) that she had to go potty (two of the three trys were successful) WAY TO GO CAMILLA!!! Since she is approaching six years old and is a little above average height and weight for her age we are running out of all 'easy' options for diapers, pull ups, overnights, etc... she wets the bed at least 5 out of 7 nights of the week and this Mama is tired of washing sheets everyday - so please pray that this area is mastered quickly

-interaction- while we were still in the hospital we noticed improvements in eye contact and attention span and they seem to be improving each day - she is paying attention to what is on the television and will respond by dancing or laughing in some cases but one of the biggest changes has been her interaction with Crosby - she constantly kisses him on the head and initiates play with him - when he tries to play with her she will laugh hysterically and doesn't try to avoid it at all - one other point worth noting is that they were playing on the floor the other day and were getting a little rough with one another, Crosby got off-balance while sitting and was tipping over and Camilla reached out as if to catch him (she would have been unsuccessful and still didn't seem to really want to 'grab' him but her 'instinct' and 'reaction time' was there and it was so good to see and don't worry I caught him:)

-therapy- physical therapy started last week and will be once a week throughout the summer in order to strengthen her left leg back to before surgery standards, we will be going to Genesis Rehab here in Demopolis - we will also travel to Tuscaloosa to the University twice a week for speech therapy for the next eight weeks - that session started today - please pray for safe travel, low gas prices (lol) and my sanity as this willbe too much driving even for me!

As you can tell we are seeing results but we do have a long way to go - "A journey of a thousand miles begins with a single step," (Lao-tzu) and surgery was the first step in the RIGHT direction.

Sorry for the delay in posting. I should have updated last week but procrastinated:( and then had a busy (sleep deprived) weekend and now this week is full of traveling and therapy. Monday we returned to see Dr. Blount (neurosurgeon) for a check on her incision. He was concerned with a spot on the incision where about a one inch portion had scabbed over on top of and to one side of the cut. They removed the scab in the office to find that it wasn't as bad as they expected; however, they want to see us weekly until there is no question that it is healing properly. The risk with this is 1)an ugly scar on top of her head 2)if infection were to set in it could easily and quickly spread into the incision, bone flap and beyond and could possibly require another surgery. I now have to clean that spot twice a day, whereas before we only were washing her hair daily to keep it all clean. Please pray that this spot heals quickly and cleanly in all ways. Poor Camilla has to be wondering why she's not able to swim this summer (it was all she did last summer) and he would not even guestimate a time-frame until next week to see this spots progress. On top of not being able to swim we are not really even able to get outside much due to the heat-wave (and Alabama summers in general) because the cut needs to stay clean and dry and trust me if you're outside for more than about 5 minutes these days - nothing is clean or dry! Poor thing just plays at our front door all day saying 'out'.

I cannot adequately express my thanks for the cards, calls, messages and meals that we continue to recieve daily! Each one seems to arrive at just the right moment for encouragement or relief! Same goes for the prayers - we continue to feel them in a very real way.

Before I end I'll answer the 'million dollar question' - NO SEIZURES TO DATE. Three weeks of no seizures - after 15 to 20 per day for 5 1/2 years - WOW - even if they start tomorrow I'll continue to praise GOD for these three glorious weeks - have I mentioned how awesome it is to be present at a miracle?

"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

praising God-

2011-05-26T21:21:00.002-05:00

I just realized today that we should just now be coming home from the hospital-that's what we were told to expect in the begining and we've been home four days. Praise God! Praise Him for a strong little girl who is bouncing back from MAJOR surgery so quickly and is an amazing inspiration to so many.

Camilla is up and walking on her own. It took about three days after coming home for her to be able to get that leg under her. The first two days she was SO FRUSTRATED when she couldn't walk on her own and it broke my heart because she looked so defeated sitting on the floor and dragging herself from room to room. However, I refused to carry her or help her walk while we were at home because I knew she would be so determined to walk that it would drive her to get stronger. She is such a fighter! The first day that she was walking on her own she was incredibly wobbly and fell once but thankfully did not hit her head on anything. She is still unsteady and a bit unsure, especially when it comes to stairs or getting in a car, but she is getting better everyday. We will start physical therepy next week because she is locking her left knee as she walks and it is creating a little limp. We will also start speech therepy next week in Tuscaloosa at the UA Speech and Hearing Center and do this twice a week throughout the summer (this place is 3 blocks from the tornado path-I'm very thankful that this wonderful facility wasn't damaged).

We will see Dr. Blount for a 'wound check' next week and will see Dr. Kim on July 11th for our first EEG. Please pray for this day - although we have not seen any seizures since the surgery this test will show if she is still having abnormal activity in the brain. Let's pray that we continue to see NO SEIZURES and that her EEG is NORMAL! Wow - that's such an odd word - normal - and extremely relative. And just FYI - she has to be seizure free for a year before they will consider weaning any medications. Let's pray that we get to this point.

One other specific prayer request is for her behavior - no problems yet - but I know that with this type of surgery behavior problems can become a big issue. Since we have already dealt with SEVERE hyperactivity and some aggression/metldowns in the past I am very aware that I do NOT want to deal with this again. Please pray that these will no longer be issues for Camilla. On a different note, she already seems to be making better eye contact, focusing longer on tasks and just more calm in general. She also seems to be sleeping so soundly - she doesn't move around all night and her breathing is deep and steady - she just seems to be resting well. Also, we believe that we are starting to see some very small cognitive gains. I hope that what Dr. Blount said is true and that without all of the 'white noise' in her head she will be able to sleep, focus, learn, play, listen and do everything with more purpose and intent.

We are looking forward to a busy summer full of fun and learning. We know that we will have to make some decisions regarding meds, school, therepy, etc... but we also realize that we are in a great place right now. We are full of hope for Camilla's future and ours! So we will continue to be positive and hopeful and look forward to each new day with 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

there's no place like home-

2011-05-22T21:50:00.003-05:00

We are home and happy :)Camilla began drinking (without coughing) after about 3:00 pm on Saturday and continued to drink well through the night. We arrived home about 3:00 this afternoon and she was thrilled to be home, exhausted but thrilled.

She is doing so well. Her coloring is fantastic, the incision is big but healthy, her swelling has passed and her smile is slowly returning. We are still dealing with some weakness on the left leg. She is not walking independantly yet but should have no problem regaining full use in the next day or so. The big concern with this is that her mind doesn't yet realize that her leg is not 'up to speed'. She is wanting to 'go' and her leg would make her 'fall' and we have to be very careful with that head! Still alternating tylenol and motrin for pain relief and trying to push food and water every chance we get. She tried to play outside some today but quickly grew tired. Hopefully she will regain her stamina about the time the strength comes back to that leg.

After much deliberation we have decided to post SOME pics of her post-surgery. We will still not publish any that show her swelling, black eyes, etc... but decided to post ones that show what you would see if you see us out and about in the days and weeks to come and yes, that includes the incision...

Sooooooo tired so this will be all for tonight. Thank you all again for the outpouring of love, support and prayers. The dinner tonight was fantastic and the food website is a new thing to me and I'm so grateful - thanks Pam for setting it up and to all who have signed up - you make me smile:)

"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

Camilla - my brave little soul

2011-05-20T22:18:00.002-05:00

A 'special' Mom just shared this one with me and I thought it was so appropriate in so many ways - the last paragraph describes what we have seen and experienced in the last few weeks and days...

The Brave Little Soul

Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, "Why do bad things happen?; Why is there suffering in the world?"

God paused for a moment and replied, "Little Soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean?" she asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone."

The little soul began to understand and listened attentively as God continued, " The suffering soul unlocks the love in people's hearts much like the sun and rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world to suffer - to unlock this love - to create this miracle - for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you. God and the brave little soul shared a smile and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through her suffering and God's strength, she unlocked the goodness and love in people's hearts.

For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys-some regained lost faith-many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased. --John Alessi

recovery-

2011-05-20T19:55:00.000-05:00

Good days and bad - that's what recovery is all about. Here we are on the third day out from surgery (which they say is the worst with any kind of surgery)and if this is the worst I'll take it.

Yesterday was a rough day for Camilla. The nursing staff didn't wake us for her 5:00 dose of tylenol and when she awoke at 7:45 she was in pain. It took the better part of the day to get the pain somewhat back under control and try to get her comfortable. She never cried (I don't think she had the strength to) but her eyes plead 'make it better Mama'. She also slept for the better part of the day and barely managed to stay awake during the visit from Occupational Therapy. After seeing Dr. Blount he decided to give her Tylenol with codeine to better manage her pain and to put her back on IV fluids to prevent any dehydration since she wouldn't drink anything (and because she lost what little bit of food she had eaten right in front of him). After the first does of T3 at 11:00pm she went soundly to sleep and other than me having to give her meds every three hours she slept great until 9:30 this morning. Today she has been very alert, awake and happy. She is laughing and smiling and playing with toys. She did great for both the physical and occupational therapists. She is still having trouble with some weakness on the left side (due to moving the right hemisphere during the surgery) and she will not really put any weight on her left leg yet. We were warned that she may have temporary weakness on that side and that it should return to normal within two weeks.

Brandon went to work today so Milla and I had some good 'quality time' together. I crawled up in her bed and we snuggled and since she can't really play with her hair and suck her thumb - she played with mine. She has talked alot today and is regaining many of her words. We also went for a wagon ride around the hospital. We bumped in to Dr. Blount in the Go Store and he was glad to see her out and about. We also went to Children's Harbor and she played some games and played with lots of toys (from the wagon of course). After all that fun - she was EXHAUSTED! After resting for a little while we were then able to get her a good bath and even a good head-washing. The bandages came off yesterday and we attempted to wash her hair then but weren't able to do it well because of her pain. Today she had a good long bath and we were able to wash, dry and comb her hair. She now has little pig-tails all over her head. We have also been able to get a good look at the incision - the big, bad, much larger than we ever expected incision - all 6 inches of it. The swelling in her face is better and her eyes aren't black today either.

As for her eating and drinking - it is a slow battle. She is eating more today than yesterday but is still adamantly opposed to drinking. We know that her throat is most likely sore from the breathing tube but now they are concerned that she may be aspirating on thin liquids since she coughs each time she is forced to drink or swallow liquid medications. We may have to do a swallow study to rule this out but we do have the clear to go home as soon as the 'drinking' situation is resolved.

Still grateful for all of the gifts, visits, calls, messages and most of all prayers. God continues to surround us with peace and strength that surpasses ALL understanding. There are moments when I hear myself say 'brain surgery' and I think "I should be hysterical" but I just can't manage it. Now I don't want to mislead anyone - this isn't easy, there are plenty of tears, fears and questions but I am always comforted knowing that this is God's plan and He is carrying me through every moment of every day. I continue to look forward to seeing what he has in store for Camilla.

As for seizures - we'll see. We have not seen a seizure as we knew it before. We have seen a few unusual shakes and jerks but not sure if that could be a side-effect of the surgery. Unfortunately we are very aware that epilepsy is a disease that can restructure itself and 'fight back' so again we remain cautiously optomistic.

"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

hope and a future...

2011-05-18T15:35:00.002-05:00

Praise God! I am simply in awe of the events of the last several days.

Monday's round of pre-op testing was smooth and easy even though Camilla was suspecting something at this point. They did everything, including the finger pricks and drawing blood, without so much as a wimper from her. AMAZING

We checked in at 5:30 on Tuesday and despite the 'hurry up and wait' mentality of the hospital Camilla remained calm and happy. In fact as we said goodbye at the operating room door she was smiling and laughing at our kisses, tears, whispers and bear hugs (btw those were some of the hardest moments of my life but that's another post). She was then wheeled off into the room and she never looked back. An hour later surgery began. We were updated with phone calls every hour and a-half with the option to call back anytime to check. Every call brought good news and a nearer end to surgery. Then came the best surprise of the day, we had just returned from the cafeteria when we looked up to see Dr. Blount walking through the doors with a smile on his face. He shared the news that surgery was complete and had gone well. He was able to do a 'complete cc' with minimal blood loss and no complications- we could see her in about an hour. And that we did - the first vision of her being wheeled down the hall into the PICU was one I will never forget - not at all a moment of sorrow or sadness but of peace - she looked at peace - I felt at peace and as I leaned down and whispered I love you her heart monitor picked up the pace and my heart melted. She was promptly whisked off and we were left to wait for visiting hours.

Upon our first visit to the PICU we found her still sleeping and in the next few hours she was in and out of sleep but mostly out. Visiting hours ended and it would be two more hours before we were allowed to see her again. When we returned for that visit we found that due to an emergency in PICU visitation was closed. We called to check and she was wide awake and looking around - not upset - just awake. This was hard because she really 'woke up' from anesthesia during this time and we were not able to be with her. I still cringe when I think that she might have been wondering 'where's mama?' and not be able to communicate that to anyone in the room.

After just a few calls with questions from PICU through the night, our next visit came this morning at 8:30 when the doors opened again. She had just woken up and seemed happy to see us although she promptly became frustrated, aggitated and upset (I think she thought we would get her and leave). Then came the process of removing 2 of the IV's, the cathater, monitors and headress. After all this and getting into her pj's she felt MUCH better, napped again and then began the slow process of trying to drink and eat again. It wasn't until Fer Fer brought her a box of fruit roll-ups that she really felt like eating and then again when the nurse ordered her tomatoes :) she was one happy chick after that!

Although the transfer orders were written first thing this morning we are just now settling into a room - it's 9:30 PM. She is finally asleep and seems to be resting well. She has been very lethargic today but is more awake and alert than you would expect the day after brain surgery. She has said 'dog' several times and tried to mouth several other words. Her left side is weak and she is not moving it as much as the right but we know that is temporary. She has not been in much pain and is only requiring Tylenol and MOtrin at this time. Her face is swelling and her eyes are begining to be 'black'. Her scalp is still bandaged over the incision so we have not really had a chance to look at it (but no drain). Her head is shaved in a very small patch (I just found the bag where they saved the hair they shaved:) on the top of her head. To describe the approach, put your finger between your eyebrows then go about half way to the back of the head that's where your corpus callosum is and they went in straight down from the top of the head.

Camilla is such a fighter - such a strong little fighter - and that's working to her advantage right now. Dr. Blount said she is on the 'fast track' to getting out of here and Dr. Kim flippantly mentioned Friday. That would be great but we do have a long way to go yet.

The calls, the texts, the visits, the prayers, the people who came to sit with us during the surgery - words don't express my gratitude. Thank you all for sharing this with us - and what a joyful time it was when we recieved the good news. Bro. Allen I will never forget the words of the prayer that followed Dr. Blount's visit - what a wonderful time of praise and giving thanks to the Lord.

And let me tell you about facebook - everyone says fb birthdays are the best but they are wrong - fb prayers are even better. The first time I logged in and saw everyone's profile pics were pics of Camilla and the prayer chain that was circulating and the posts to my wall (btw the notification button doesn't go higher than 100) and the personal messages and the new friend requests and Jeremiah 29:11 everywhere I looked - I just cried every time. You people are great - you sure know how to spread awareness and make people feel loved and supported.

I remain amazed at the power of prayer. There is no other way to describe the peace that surrounded me and Brandon and our families yesterday and the calm that was felt by those who waited with us. We had only one moment of uncontrollable tears and fears at the OR doors but even then there was no question that this was the right thing for Camilla and calm quickly returned and peace restored. Only by the prayers of others is this possible. Thank you does not do justice to the emotions felt for those who prayed and are praying.

Wow - long post. I think the only topic I haven't covered yet is seizures. I'm afraid to type the words - so far 'no seizures'. We remain cautiously optomistic. I'll try to be better at posting for the remainder of our stay and I'll try to cover the topics I've forgotten 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

very quick medical update-

2011-05-18T00:00:00.003-05:00

Will update blog tomorrow with all the details of surgery but just to let everyone know - surgery went GREAT!!! She is in ICU tonight and resting well. Thanks for your concern and prayers - God is GREAT - ALL the time!!!!

meet dog-

2011-05-12T13:55:00.001-05:00

this video is of Camilla just playing by herself (a rare moment indeed) - in the video you see Camilla's best friend in the whole wide world - a bear named 'dog' - I was trying to catch her laughing hysterically while it looked like they were having a converstion but of course she stopped as soon as I got the camera - you may notice some things about her development if you're looking a)she says dog several times (this is one of about 20-30 single labeling words she uses - not always correctly afterall 'dog' is actually a bear and she calls Crosby this too) b)she responds to her name being called c)she is HAPPY:)

cover me -

2011-05-10T22:38:00.003-05:00

This song just says it all right now - don't worry those of you who are great fans of the 'Dream' song it's still on here just second for now - it will return to first after surgery - I've always loved Bebo Norman and he is just speaking volumes to my heart right now.

One week til surgery. The joy and the pain are overwhelming. Today I am focusing on the joy - the joy of a daughter who God is using in a mighty way. He is building her a strong testimony and I pray that we all use it for His glory. Consciously my mind says I am ready - subconsciously my horrible dreams and mouthful of ulcers say differently. In this particular case I am very thankful that Camilla reamins blissfully unaware of what is to come. Although she is very aware that her Mother is very clingy this week and she squirms to get away from the constant barrage of hugs, kisses, whispers, snuggles,etc...

Thank you all for your gestures of kindness and prayers this week especially. We have been blessed with wonderful family, friends and a loving church family who is reaching out to us during this time and we are very appreciative of them all.

Many have asked how they can keep up with us on the day of and following surgery. I plan to do very general updates on facebook the day of surgery but will probably not have the time or mindset to blog that day. Hopefully I will be able to blog the day after surgery and keep everyone well posted from there. If you would like to friend me on facebook you can find me at Kelley Jacobs Smith - put a note that you follow the blog so I'll know you're not a virus :)

"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

Camilla with Crosby on his first birthday this past Saturday :)

right around the corner-

2011-05-08T20:27:00.002-05:00

9 days - I had tried not to do a countdown but Crosby's first birthday was yesterday the 7th and when I thought about it upon waking up yesterday morning my brain immediately said '10 days'.

10 days to get so much done - so much preparation - she has one week of school left - I have 20 projects I needed to finish before she got out for the summer - I have been cooking double and freezing - I have to pack Crosby and decide were he will be during all of this - I have to tend to everything here so that I can be gone indefinetly - and on top of that there are the emotions of all of this to be dealt with - people are no longer believeing 'she's fine' or 'we're good' - I'm afraid the fear is showing in my eyes - crowds make me anxious - EVERYTHING is overwhelming - and I better stop there before the people show up with a nice white coat for me :)

I won't lie - there have been many more bad days than good lately and the reality and doubts are taking their toll but I continue to find comfort in the Lord and know that Camilla is safely resting in his perfect will. 1 Peter 5:6-11 reminds me to "Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you. Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings. And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To him be the power for ever and ever. Amen."

Seizures are better this week than last. We are continuing to learn more about the surgery each day. Please pray for all of us - this is so much more difficult than I ever thought it would be - and I never thought it would be easy - please pray for our 'hope' and 'future' (Jeremiah 29:11)

medical update - finally

2011-05-03T22:00:00.002-05:00

So surgery is scheduled - May 17th is the day. We will arrive at Children's on the 16th for pre-op testing and we have to check her in for surgery VERY early on the morning of the 17th. She will be in PICU at least the first night and if everything goes perfectly our stay should be about a week. The surgery itself will last about 3 hours but once they take her back it will be roughly 7-8 hours before Brandon and I will be able to see her. We decided to go with a complete corpus callosotomy. Dr. Blount (neurosurgeon) strongly suggested this (as did Dr. Kim her neurologist) and after many questions and much discussion Brandon and I felt MOST comfortable with this decision. Dr. Blount went into great detail and explained that it would not be impossible to learn to read (which is one of the things we were originally told and were concerned with) but it could effect reading. The greater worry (and why it would effect reading) is that it WILL limit her peripheral vision. As horrible as this sounds (and feels) he was very adamant in reminding us that our number one goal must be to reduce/eliminate seizures or development progress can be a non-issue. After the appointment we felt very relieved for several reasons 1)many questions had been answered 2)Dr. Blount went into great detail describing everything we could expect from start to finish (2 hours worth) 3)tough decisions were at least made and behind us 4)we had a date for surgery. So now we have entered another phase of waiting.............but I'm thinking now that this will not be the hardest part.

As for her current coniditon - I think the seizures know that we're coming after them because they're fighting back in a big way. Last week averaged 35-40 per day and they were coming in some pretty scary clusters that lasted awhile. After the clusters she would grab her head and just say no,no,no... this while running around in a very frantic state. It breaks my heart to think they are hurting her...I feel so helpless. After tossing around many options as to why this may be happening now I firmly believe that it is God reinforcing the decisions we have made concerning surgery (thanks Amanda) because let me tell you the doubts have been creeping in. Still increasing Lamictal.

This past weekend was wonderful. It was the best weekend I've had in awhile. Thanks to Jennifer and Ryan's wedding in Destin, FL I was able to get away for a long weekend all to myself. I spent way too much time sleeping on the white sugar-sand beaches, in the spa and just sleeping in general but I was also able to catch up with friends new and old and just generally relax. ALL Moms should do this for themselves once in awhile and I will surely be doing it more often! Thanks to the grandparents for watching out for the kids (Brandon too had scheduled a long weekend to himself turkey hunting in Kentucky - I guess Dads need to relax too). So anyway, since the appointment last week and then the tornados that have affected sooooo many sooooo close I had put off all thinking and feeling until after my vaca. Well, now that I'm home and the reality of it all is hitting like a semi I am feeling quite overwhelmed by most everything. There is so much to get done and prepare for before the surgery and I simply can't find the energy or desire to do any of it. Please pray for this-

Again, I want to thank everyone who has reached out to us following the appointment last week. We were barely out of the hospital before we were receiving texts and calls wanting to know how the appointment went and when the surgery would take place. It is so comforting to know those that love and support you in times like these-thank you all.

It is late - I am tired - I hope this post has made some sort of sense - one verse that still does - "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

maybe next time-

2011-04-27T23:31:00.002-05:00

So I sat down ready to write all about our visit with Dr. Blount but I can't. My heart is so heavy, not only from the visit and actually having surgery scheduled, but the exhausting day of devastating weather. For my readers that I haven't met - we are only 60 miles from Tuscaloosa, Alabama where a mile-wide tornado struck today which damaged so much and caused great loss of life - the kids and I are there at least once a week - we have MANY friends and family in that area - and that is where Brandon is working at this time. Parts of this dear city are just gone - they simply don't exist anymore. Several of my family were actually in the path but are ok - there are others we haven't been able to reach yet. So please understand that I just can't give details on Camilla's situation at this moment, not when my heart is aching for so many. I will list the majors below - more to follow later

pre-op testing - May 16th
surgery - May 17th
COMPLETE Corpus Callosotomy

Good night and God Bless!

thoughts of a mom-

2011-04-18T20:25:00.003-05:00

So here's the final story I'm posting (see post below for explanation) - medical update to follow soon

Thoughts of a Mom
Maureen K. Higgins

Many of you, I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well-worn. You are stronger than you ever wanted to be. Your words ring experience; experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters".

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We are initiated in neurologist' s offices and NICU units, in obstetrician' s offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries. All of us have one thing in common.

One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.

We do not discriminate those mother's whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while disipline was advocated by the person behind us in line.

We have tolerated inane suggestions and home remedies from well-meaning strangers.

We have tolerated mothers of children without special needs complaining about chicken pox and ear infections.

We have learned that many of our closest freinds can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "Welcome to Holland" and Erma Bombeck's "The Special Mother". We keep them by our bedsides and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doos on Halloween, and we have found ways to help our deaf children form the words, "trick or treat". We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of or family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds.

We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses, and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, ever stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

the special mother-

2011-04-18T20:15:00.002-05:00

So - I have NO intention of turning this blog into a cryfest with each post but since I received several messages and emails from 'special moms' after the Welcome to Holland post I thought I would share two other stories that were given to me somewhere along this journey with Camilla - here's the first - and before reading I want ALL of you 'special moms' to know how much I care for, respect and pray for you all DAILY

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

praise

2011-04-15T21:14:00.002-05:00

Trying to get some videos posted - this one is of a skill that she acquired several months ago but she has managed to retain it which doesn't always happen - this video shows her following directions and if you think about all that she does and how quickly she is able to process this it is such an achievement for her - she listens, takes the box, goes to the cabinet, opens the door, throws the box in the trash, closes the door and comes back to me, and even gives me 'five' after all that (and then picks her nose which was not part of the directions lol) - such a thought process for her - we are so happy about this - after practicing this skill MANY TIMES she is now my 'big helper' while cooking dinner each night

welcome to holland-

2011-04-13T16:35:00.002-05:00

Someone shared this with me soon after Camilla's initial diagnosis and it is something I re-read almost every week-

Welcome To Holland
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

wow and thanks-

2011-04-05T23:05:00.003-05:00

I just checked the stats for my blog for the first time ever and in the last 7 days I've had 295 views - wow - no pressure here - I hope you all enjoy the blog whether you are direct friends and family looking for an update on Camilla or whether you are a family with a child dealing with similar circumstances and are looking for comfort in the fact that you're not alone - either way I'm glad to have you :)

five years ago today-

2011-04-03T20:34:00.002-05:00

It kinda snuck up on me this year - it's our anniversary. Five years ago today was the first day I ever heard the words Infantile Spasms. Five years ago today was the day I was told my baby would never walk or talk. Five years ago today Camilla was given her first dose of antiepileptic medicine (AED). Five years ago today she had her first EEG. Five years ago today we lost hope. Five years ago today we lost a very important part of our baby - we lost her future.

From the moment I learned I was pregnant (and honestly since I was a little girl) I wanted a little girl of my own. I dreamed of her being a dancer, a gymnast, a cheerleader, seeing her walk across the stage at graduation, seeing her Daddy walk her down the aisle and seeing her raise babies of her own. Oh what a joy to think about these things and on the tough days of my pregnancy I would just sit and dream of all of the good times we would have. Five years ago today my dreams changed.

Many parents of special needs children go through the five stages of grief upon learning of their situation - 1 denial 2 anger 3 bargaining 4 depression 5 acceptance. I recently read an article about a mother of a deaf girl who went on and on about how she went through these stages and how excrutiating it was and my heart just went out to her because I knew her pain. She then went on to say that two weeks later she arrived at acceptance and they just regrouped and went on with their lives. Wait a minute - two weeks? Well I am truly proud for SUPERMOM but that was NOT ME. Here we are five years later and I finally feel that we are arriving at acceptance. I finally feel that we are finding Camilla's future once again.

Just a look at what my 'baby angel' has been through in the past five years:

11 EEG's: 20 mins to 72 hrs in length
3 MRI's
1 lumbar puncture
genetic testing
AED's: Phenobarbital, Lamictal, Topomax, Keppra, Banzel, Clonazepam, Depakote
Other meds: L-Carnitine, Clonidine, Adderall, Risperdal, Melatonin and a WIDE variety of other herbal and vitamin supplements (pills and injections)
Ketogenic Diet - 2 years (the only thing that has EVER helped to control seizures)
Vagus Nerve Stimulator
4 hospital stays
Gluten Free Casein Free Soy Free diet - 9 months
Corpus Callosotomy - to be scheduled for May 2011

In looking back at each of these events or meds I am stunned by how good she is through all of this. She takes her meds with applesauce and I don't think she has EVER fought me on this - she just knows they go with breakfast, dinner and sometimes lunch. Some of the tests have been trying but she still gets through them all better than I probably would. I really am amazed at what a trooper she is and how she can remain sweet and loving through it all.

I'll end by sharing her official diagnosis'

1 Infantile Spasms evolved to Lennox Gastaut Syndrome
2 Severe Global Developmental Delay including Mental Retardation (provisional)
3 Autism (provisional)

*provisional just means it's all a result of the IS/LGS

Five years ago today - my whole world changed.

"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

waiting-

2011-04-01T23:31:00.002-05:00

How does the song go, '...the waiting is the hardest part.' So true - SO true! We are just kinda in limbo these days waiting for the next appointment, waiting for surgery and still waiting for the latest meds to work. So far Lamictal is not helping with seizures but we still have a long way to go to get to full strength, 3 1/2 months in fact. This is the one that can 'be fatal if you see a rash' and thank GOD for no rashes but you have to wean onto it very slowly. It will take 4 months to get to thereputic levels :( Also, we are still weaning off of Banzel and are down to a minimal dose at this time - I hope Dr. Kim will remove this one SOON. It seems to have worsened the presentation of the seizures and it's the one that makes her get up several times each night. We are down to two or less times most nights and we have had three (cout'em 3) full nights of sleep since Dec. 19th (yes I'm being sarcastic). Seizures are averaging about 15 per day mostly mild to moderate with a few severe coming early morning and late night. She's still having a reaction to each one but with some of them now she laughs hysterically afterwards - not a good laugh though.

In other Camilla news - we registered her for Kindergarten again this coming year. We decided it would be best to repeat since hopefully after surgery she will be able to learn and retain the basics much better than this year. She loves school so much and we are happy with the love, learning and attention that she receives from everyone at the school.

As for prayer requests:
patience (for the waiting)
rest (for the sheer exhaustion)
calm (for her hyperactivity and seizures)
peace (going into surgery)

Again, thank you all for the wonderful cards, texts, calls, gifts and messages that we continue to recieve on a daily basis. It is wonderful to know that so many are thinking of and praying for Camilla and it is so reassuring to know that we have so many great friends and family 'with' us during this time. God Bless You ALL!

I plan to post some videos of Camilla soon - hopefully these will serve as the 'before' videos and then I'll post again after surgery - praying for wonderful differences between the two. Some of these videos show her having seizures so be prepared if you've never seen this. Her's are not shocking but some people seem so disturbed after seeing them - I guess we are so numb to it these days - it's amazing what you can get used to after five years.

"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." God continues to reveal his plans for Camilla each day. He has carried us safely so far along this journey with Camilla and we have FAITH that He will see us through these next several months. Looking back on what she has been through we can NOW see so clearly that He has brought us to this place (at one time we could never imagine ourselves here) and we know that this is where we are supposed to be. We know that this is how He is choosing to work through Camilla. Through his plans He is giving us hope and we have faith that He is also giving Camilla a future.

Well, I hear the pitter patter of little feet and since it's just after midnight that means she right on schedule - I better go before she wakes Crosby.

medical update-

2011-03-14T20:52:00.002-05:00

So today was very informative! We learned so much about the upcoming surgery - big details and even very tiny details. There is still so much more we have to learn and we have yet to make the decision on the type of CC they will do but we feel much better after digesting the info from today. We learned that the surgery will take approx 4 hours and Camilla will be in the hospital about a week. Many of the details were not pleasant including the fact that she will spend her first night post-op in PICU (Pediatric Intensive Care Unit) and we will not be able to be with her. Brandon and I will be able to see her some after surgery but it hurts my heart that we won't be able to spend that first night with her. They assured me that she would be very 'out of it' for the first two days anyway so she wouldn't know but they don't know that anesthisia doesn't keep Camilla 'out of it' - she's either awake or asleep - she has never had that anesthisia 'fog' that most everyone deals with - but I have every confidence that they know what they are doing - I'm just being her Mommy and worrying :) I also came home with the names and numbers of several other families who have been through this so in the next week my mission is to contact these families and learn their stories. We also left the office today with ANOTHER new med, Lamictal, yeah I know , it's the one they gave us at nine months and said "hey if you see a rash it could be fatal so give us a call." Well after two days she had a rash (I'm pretty sure now that it was just diaper rash) but I gave them a call and we never saw that drug again - until now. And now I know MUCH more about this drug and since we are still despartely trying to go into surgery wiht the best amount of seizure control possible we will start it tomorrow. Continuing to wean off of the Banzel.

Our appointment with Dr. Blount, the neurosurgeon, is April 25th and we will set the surgury date at that appointment. It is then that we will have to decide between complete or anterior two-thirds. Dr. Kim assured me that the surgery would be in May and in fact could be as little as a week following the April appointment. This process is going much faster than we expected, we began in December and here we are looking at surgery in May - this is so rare and only confirms that this is God's Will for Camilla.

Camilla with Ally (L) and Dr. Kim (R)
of note: Camilla actually had a seizure while Dr. Kim was in the room with her today - it was a mild seizure and her reaction was the same but very good for Dr. Kim to experience it first-hand - she noticed so many things in those brief seconds

specific prayer requests:
new med to work and only good side effects
sleep to improve with the wean of Banzel
successful surgery = no seizures, improved development
first night after surgery
shaving a portion of her head (Mommy's being vain I know)

"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

back to b'ham

2011-03-14T07:54:00.003-05:00

We are heading back to Birmingham today to see Dr. Kim, the neurologist, and we hope to get any results from the MRI and to find out MANY details concerning surgery. We are praying for safe travel and good news!

gatlinburg fun

2011-03-09T23:12:00.003-06:00

We spent this past weekend in Gatinburg with the kids and really had a great time. Since Brandon is working in Tuscaloosa now and still works at the kennels every afternoon he doesn't get to see the kids near as much as he used to. They really enjoyed having Daddy all to themselves for 4 days. We went on picnics, went to Cade's Cove, took the tram to Ober Gatlinburg, and did alot of walking and driving in the park and on the strip. We made lots of great memories-.

medical update

2011-03-09T21:25:00.003-06:00

So when the phone rang about 3:00 this afternoon - I just knew it was Ally (surgical coordinator) - and I started shaking. I picked up the phone and before she could even begin speaking I felt a peace like never before. She immediately began saying that Camilla had been approved for surgery and that all involved felt that she was a prime candidate, but there were still some decisions to be made. Decisions that we will make when we meet with the neurosurgeon on April 25th. Decisions that will be difficult-

Ally went on to describe that the team could not decide between a 'complete corpus callosotomy' or an 'anterior two-thirds corpus callosotomy.' To describe corpus callosotomy for anyone who may have missed it before means to sever the bundle of nerves that connects the right and left hemisheres of the brain. 'Complete' would mean completely severing it and 'anterior two-thirds' means they would essentially just cut the top off of this bundle. Obviously 'complete' would give us the greatest chance at total freedom from seizures and 'two-thirds' would still give a good chance at total freedom and even if she did have them after this they would most likely be less frequent, less intense, shorter, etc... The kicker - if we do a 'complete' there would be no chance that she could ever read. It has to do with the mechanics of how you process the info you see and then translate that between your eyes and the different hemispheres of the brain. There are other things to consider with both of these options and we have many more questions about seizures and development post-surgery. Hopefully we will have these answered before we meet with the neurosurgeon and have to make this decision.

Hold on WAIT - did you get what I just said - they believe that she could be able to READ. That her development could progress that far and so much more. Ally went on to say that with completely devasted children (who cannot feed themselves, walk, say any words, follow any commands) that there is no question - 'complete' is the way to go for them. But they know that is not Camilla, they know that she is still developing and still learning and they want to know if we are willing to risk any seizure activity in order to allow her development every shot to progress. I know there are no certainties but what a wonderful thought!

I want to thank everyone who has prayed, come by, sent texts or messages, or called. I cannot describe how grateful we are to those keeping our sweet baby in their prayers. And believe me - the prayers are being answered! All day today I have been so happy, unanxious (except while the phone was ringing), and at peace. A weird peace - like there's a very small part of me screaming 'they just told you that your 5 year old is going to have major brain surgery why are you not freaking out? you should be screaming and crying and angry' - but I'm not. Now don't get me wrong, over the last 5 years there's been plenty of that - but not now - I promise that whatever is to be 'it is well'.

"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

conference update

2011-03-09T10:42:00.001-06:00

Just got a call from the surgical consultant and Camilla's case is being presented from 12:00-1:30 today - prayers needed during this time.

prayers please

2011-03-08T22:01:00.002-06:00

So Camilla's conference is in the morning, I'm excited and sick to my stomach all at the same time. Prayers needed for this conference and specifically for God's will for Camilla to be the outcome and not the docs - whatever that may be - "it is well." BIG day - BIGGER God

"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

2011-03-07T18:32:00.003-06:00

OK friends - lots to report here!

We have been playing with medication dosages for several weeks now and so far we have only seen more seizures and Camilla's disturbing reaction to each one. She is still screaming, clapping violently, and taking off running after EVERY seizure. She will also start saying NO,NO,NO very loudly immediately following. She has never had this type of reaction before and it is very disturbing and catches the attention of everyone around her at the time. Seizures are averaging 10-15 per day right now.

We just arrived back home after having Camilla's MRI today at Children's. We had to arrive at 6:30 am and were done with the procedure around 10:00. We don't expect any news from this really - just another view to have in hand going into surgery. And speaking of that, I just now received an email from Dr. Kim stating that she will present Camilla's case at conference THIS WEDNESDAY. We covet prayers during this time leading up to and throughout the day on Wednesday. This is such an important day in Camilla's life. This group of 10 doctors and specialists will be making decisions during this conference that will affect her quality of life now and for the rest of her life. Please pray for their wisdom and Godly guidance during this time. I will post the decision from conference when we know.

"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

the year in review - pics

2011-02-26T22:36:00.002-06:00

since I'm still trying to bring the blog up-to-date here are some pics covering the last year - it's alot of pics because I am really behind - medical update to follow soon

medical update

2011-02-15T22:22:00.002-06:00

We've been home a week now and are doing OK on the new meds and with the new Milla. I've had a hard time getting back in the routine of giving meds several times a day so that's something I'm having to adjust to (it's been just at bedtime for awhile now). The new meds don't seemed to have reduced the number of seizures but Camilla's reaction to seizures these days can be shocking. It seems to be easing with each passing day but at first immediately following a seizure she would take of running, scream really loud(as if scared or in pain), jump up and down and clap her hands violently. It was really disturbing but thankfully it does seem to be getting better. Sleep is much better this time around with this med. The first night home she was up 8 times then we went a couple of nights getting up 3 or 4 times and now we are down to just 1 or 2 if at all.

I am to email Dr. Kim tomorrow to let her know how this past week has been. I look for her to begin the Lamictal later this week. We will go for an MRI March 7 and then back to Dr. Kim the week after that. Still looking at surgery sometime in May or June.

"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

2011-02-09T11:13:00.002-06:00

After all the tests, after all the hours, after all the tears, after all the prayers - we have direction. During the hospital stay Camilla was started on Banzel (a med that she's been on before but had to come off because she couldn't sleep on it) and we are rapidly increasing to a mega-dose over the next two weeks. We will also add Lamictal next week to hopefully gain some sort of control over the seizures-keep in mind she was already on four meds before the hospital stay. This effort with the meds is something that we are very doubtful that will help at all and when I say we I mean the docs too. Even if we see any improvement in the seizure activity we will most certainly be dealing with a number of side-effects (insomnia, disorientation, lack of motor coordination, stomach issues, etc...). The docs explained their reasoning as a 'last ditch effort' before surgery. It's one of the attempts that has to be 'checked off' before they will release you for surgery. So here we are, having to suffer through the next 3 months on all these meds as we continue to do more testing to prepare my baby for surgery. A long time ago Brandon and I decided to opt for less medicine, in exchange for more seizures, in order to have Camilla 'with us' as much as possible and not lost in a medicine fog or dealing with more side-effects than any of us could handle. So the next couple of months will be difficult but we are very glad that the docs are continuing to prep for surgery and not waiting to do so after the end of the 3 month med trial.

We will go for an MRI on March 7th and back to see the neuro again on the 14th. There will be a few more tests after that but with all things going smoothly Camilla's case should go to conference in late April or early May. This is when EVERYONE involved with Camilla's case (2 Neurologists, 2 Epileptologists, surgery coordinator, surgery consultant, 2 Neurosurgeons, etc...) will meet and Dr. Kim will present her case. She said these meetings usually take about an hour and after the presentation everyone will get a time to give their opinions on surgery - the good, bad and ugly for Camilla. THIS WILL BE A VERY IMPORTANT DAY! If she is approved then surgery will be scheduled within the month, so we are looking at May or June.

As we find out more details about surgery I will do a little more explaining of what will be involved, recovery and hopeful outcomes. I will also be updating on the side-effects of the med trial. Right now I ask for your PRAYERS; specifically for sleep and patience for all of us during the med trial, for ease and clarity for the testing to come, and for all of the people that will be involved with Camilla's conference. I will post the day and time of her conference as soon as we know so that we can all pray very hard during that time.

Thank you for your concern and prayers for Camilla. Your support and encouragement through this process has meant the world to us. Below are some of the last pics from our stay at Childrens. I'll try to post a few videos later-

medical update

2011-02-06T21:35:00.002-06:00

So I lied - this is my next post and I'm not at home. I thought I'd update on the madness that has ensued tonight. Today's first dose of Benedryl wore off about 5:00 and the maddening itching began again. We were having to hold her hands so she started rubbing her head on the side rails of the bed, pillows, us, everything. She calmned down long enough to begin playing and coloring again and we now know it was a cop out because a few minutes later she was shoving crayons into her head wrap to scratch her head! Needless to say, despite our best efforts and another dose of Benadryl, she completly tore out 8 of her leads and displaced several others. They just finished replacing the leads and re-wrapping her head - they woke her to do this - Benadryl makes her antsy and irritable - her head was still itching - are you getting the picture of why it took three adults to hold her down during this process? What a nightmare!!! And we were almost on our way home without one of these MAJOR MELTDOWNS/FITS!!! Please pray for a full nights sleep and being able to come home first thing in the morning - the neuro should be by about 8:00am - hope she gets the process rolling and we are on the road by noon. We have received many texts, calls and messages this weekend - THANK YOU ALL!

medical update

2011-02-06T11:46:00.002-06:00

We are so ready to go home! Camilla's head is itching bad this morning with all of the glue, tape, electrodes and other gunk wrapped up in it and they had to redo her leads this morning which meant more of the above :( They are bringing in some benadryl to help with the itching. We have seen the neuro this morning already and will know more from her after getting test results tomorrow morning. Camilla is very restless so far today and has been fighting being in the bed. She has just eaten lunch and is finally settling down for a nap (a quick one I'm sure). After she wakes up we will be able to unhook again for about an hour so we plan to hit the activity room and walk aroumd a bit. Cici and Papa and Crosby will be here later to relieve Daddy who has to go to work tomorrow. Hopefully the rest of the day will be smooth and easy and tomorrow should be very busy until we get out at noon! My next post will most likely be from home :)

medical update

2011-02-05T14:42:00.003-06:00

Today has been the easiest day. We saw the neuro earlier and although there was not much to report it was a good visit. We were able to 'unhook' Camilla from the wall for about an hour around lunch and we took her for a walk around the hospital and to the cafeteria for a bite to eat. She was so happy during this time and she is doing so much better after being out of this room for a little bit. She napped and played well until passing out just a bit ago from exhaustion. Today was good-

quick medical update

2011-02-05T10:03:00.003-06:00

So far this morning has been quiet and peaceful. She was up for several hours in the night last night (a side effect of the Banzel that was started yesterday) so she slept late this morning and is just finishing up breakfast and getting dressed for the day. They did have to redo some leads this morning and her seizures seem to be a little worse this morning but all in all she is pretty calm at the moment. We are waiting for the neurologist to come in most any moment and we will know more after talking with her. More to follow later...

medical update

2011-02-04T20:29:00.002-06:00

Where do I even begin? The day started out with no eating or drinking due to the lumbar puncture scheduled for 8:00. That test didn't actually happen until about 9:15 but thanks to many prayers Camilla did not once ask for anything to eat or drink beforehand. We had to redo her leads this morning, she had pulled about 5 completely off and others were askew but she was really good this time - no meltdowns and she didn't even have to be held down! After the test at 9:15 she had a hard time coming out from under the anesthsia - she was really restless and was fighting hard. After waking up and finally eating we saw the neurologist who told us we would now be here till Monday. She started Camilla on a new med this afternoon and it's one they can increase quickly and see results by Monday but if you ask me her EEG already looks calmer after the first dose - still seeing MANY seizures though. We usually see 5-20 seizures in a day and we have always been surprised during these tests to know just how many she actually has that can't be seen - no different this go around - she's averaging at least one seizure per minute when she's awake.
We did find out the results of the spinal tap and she was negative for Glucose Transporter Deficiency - bittersweet - it would have given us a reason for her seizures but the treatment would have been to go back on the ketogenic diet indefinetly which would be hard now for my little girl who LOVES TO EAT!

So now on to the next course of treatment - we started Banzel today along with the other meds she is already on and we will start Lamictal next week (we have tried both of these meds before B at 4yo and L at 9mo). If the addition of these meds
hasn't stopped her seizures entirely after 3 months we will do surgery. Dr. Kim believes that a Corpus Callosotomy will give her the best chance at freedom from seizures and SPEAKING! This surgery would invlolve severing the bundle of nerves (corpus callosum) that connects the right and left hemispheres of the brain - MAJOR. I won't even get into our emotions about surgery right now but I will let you know that this is not a surprise to us. It is something we have seen coming for a couple of years now when no medication, diet or even the Vagus Nerve Stimulator would touch her seizures. I will say this though - I can feel your prayers in many ways 1)I didn't almost throw-up today when Dr. Kim started talking about surgery 2)I have a very eerie calm when thinking about surgery now 3)I have a really amazing feeling that God is about to do something really special with Camilla and after 5 years of dealing with daily seizures I can say that whatever her future is 'It is well...'

To sum up the rest of the day - we are still dealing with the boredom and irritability of being in a hospital bed/room for 2 days now and we have 2 1/2 more to go. Thankfully though the grandparents arrived in full force today and Brandon and I were able to get a break. Please keep the prayers coming - we thank God for them everyday! Here are a few pics so far-

medical update

2011-02-03T22:32:00.002-06:00

Finally she is all tuckered out! What an unusual and emotional day for Camilla. I'm sure it is so hard for her to understand why we have to put her through such things but all in all she really does well with whatever we throw at her. She played and fought hard once we got her all hooked up and was really OVER the hospital bed by the time sleep came. She has a VERY small amount of freedom to walk about in the room but the wires aren't very long and the video only picks up about half of the room. Lumbar puncture will come first thing in the morning(hopefully) - they have already placed her IV and is NPO after 2:00 am. She is already bored with most of the toys and activities I brought and our backups (relief and activities) may not be able to travel tomorrow with the weather. So keep the prayers coming and please know that they are being answered - they have been all along:)

I cannot tell you all how much we appreciate your texts, comments, messages, calls, etc.. It means alot to know we have the support of our family, friends and church family! I didn't get to take pics during the hookup but if you're interested in the process and more of what this test involves you can check out the blog archive on the left side of the screen and go to August or September of 2009. Sleep calls so posting pics tonight is not gonna happen - maybe tomorrow?

PS she has been talking in her sleep while I have been posting - incoherent words but she is really telling a story and she is TOTALLY asleep I know this because I am watching her brain waves as she's speaking - WEIRD - I know right?

medical update

2011-02-03T15:47:00.002-06:00

We arrived at Children's at 10:00 today and then had to wait until about 1:00 to get into a room - have you ever waited with Camilla for anything - NOT FUN! We had Camilla and all of our luggage that we had to keep up with for those 3 hours and it was hetic! But thank goodness we got here and got settled before the snow hit. It has been snowing like crazy and all the staff keep talking about is how the roads are closed and they will have to spend the night at the hospital - it's ok with us we the like the batch of nurses on this shift :)
Hooking up the EEG was a chore this time, it took two of us to hold her while the tech attached the leads. It took about an hour and we only had one meltdown during that time (of course we had already had two during the wait). We are now in a room and Brandon and I are taking turns sitting with her and playing. We brought puzzles, books, bubbles, beans, stickers, play-dough, leggos, etc... Thanks Pam for sending that annoying book :) it does keep her occupied! She is VERY active and we are fighting to keep everything attached! Please pray for calmness and her to not get frustrated with us, the nurses or this bed.
Looks like the lumbar puncture will be tomorrow morning. Pray for her as she will not be able to eat for six hours prior - this is a BIG DEAL for her - pray that the test is not delayed for any reason.
I started blogging again because so many were wanting updates so please leave a comment so I'll know that it's helpful. Thanks for your concern and for your prayers - keep 'em coming! I'll try to post some pics soon!

long time no blog

2011-02-02T22:11:00.002-06:00

Ok, ok, so I know it's been awhile but there's been alot going on! When I last left you I was about to leave work and expecting a little boy in May - well our bouncing baby boy Crosby Otto Smith made his arrival on May 7th, 2010 at 2:42 am weighing in at 7 lbs 10 oz. He is the BEST baby on this earth and he sleeps, he eats, and he poops and he does them all often and easy! Camilla and Crosby get along wonderfully but are more than a handful! Being a stay at home mom has not been the easiest thing I've ever done but it's one place that I know I'm supposed to be - at least for now!

One of the reasons I'm updating at this time is because Camilla is about to undergo some tests at Children's this weekend and I have had many family and friends ask about a way to get updates, not just for now but on her medical situation in general. So back to blogging I go - heigh ho heigh ho

We will be checking into Children's hospital Thursday morning and will begin a 72 hr EEG and will have a lumbar puncture and several other tests over the weekend. We plan to return home on Sunday. Prayers needed for calmness during tests (she has to spend all of her time in a bed), clarity of tests, results and course of treatment to follow. Thanks for your concern and your prayers!

recent pics

2010-01-25T11:16:00.002-06:00

These pics cover the events of the last several months, including buying a new camera that I despise and trying to figure out how to take a good pic with it! Bear with me! Pics cover the Christmas on the River Gala with friends and JT Thomas winner of Survivor Toucantis (he was our Grand Marshal), Camilla on Jan. 7th, the 80's Bash Sillhouette Dance and our recent trip to Orange Beach.

It's a BOY!!!!

2010-01-25T11:15:00.001-06:00

family update

2009-12-02T13:50:00.002-06:00

It's ime to share lots of good news with our friends and family! First of all, there is another little Smith on the way! I am four months along and the due date is May 20th! We will find out on Dec. 14th whether we are expecting a boy or a girl! We are so excited and Camilla is ready to be a big sis! Also, I will be resigning from the Chamber of Commerce on Dec. 11th to be a stay at home MOM! Camilla is ready for potty training, sign language and will be going to speech therapy at Children's weekly so we will be very busy until May when #2 arrives - and then we'll be busier! Please keep our family in your prayers through all of these transitions! Have a MERRY CHRISTMAS and a HAPPY NEW YEAR!

halloween fun

2009-11-23T10:22:00.001-06:00

I just had to post these pics from the Halloween Party we went to - Brandon went as one of the 3 Mustateers - it was hiliarious!

trick or treat

2009-11-23T10:10:00.002-06:00

Pics from Halloween - Milla was the cutest 'pink lady' you'll ever see!

fab four

2009-09-15T12:12:00.002-05:00

Camilla turned four on August 14th and she had a family party that night and then a family and friends party on the 22nd! She loved both of her celebrations and has gotten good at tearing into those gifts! I can't believe she's four! It seems like just yesterday...now I'm really sounding old!!!

pics from hospital stay-

2009-09-13T20:31:00.002-05:00

Finally-these are the pics from Camilla's hospital stay at Children's a couple of weeks ago. This was the test for her 48 hr EEG. The pics give you an idea of how confing this test is and how she is actually 'hooked up'. Thanks for all the prayers - I KNOW they were answered! She cried herself to sleep after 10 minutes of applying the leads - so the last 50 minutes were easy on everyone. She did so well having to stay in that same small bed for the entire 48hrs - she never even tried to get up! She sleep alot during the time and never once had to be sedated. I don't think I would have done as well as she did! We will go back for her MRI in a couple of weeks and then after that the follow-up for all the results. Please continue to pray!

medical update:

2009-09-10T16:29:00.002-05:00

It's been a couple of weeks since I posted a medical update so here goes! Camilla's seizures have improved drastically since beginning Banzel. They are back to the milder myoclonic jerks that many times only Brandon and I will notice because of the way she tenses up or her eyes move or arms move. We are VERY thankful that the horrible seizures that were a constant part of our summer seemed to have disappeared. We were very unsure about beginning Banzel and still have our reservations but so far we have not seen any major negative side effects with the exception that she is back to mouthing EVERYTHING (and of course it's flu season)! She continues to take Phenobarbitol and Clonazepam daily. Camilla is also coming off of a growth spurt that lasted most of the summer and we believe that may have contributed to the severity of the seizures and why they are improving now (growth spurts have certainly affected her in the past). Camilla's seizures are still present everyday and right now she is averaging 5-20/day. These are usually spread throughout the day and may come in clusters of 2 or 3 or more but also may not.

Developmentally she is showing some progress. Our favorite words right now are dog, bubble, bath, no no no, baby and bear. She is attending the BEST program at Westside full time (8-2:30) and is doing well in this environment. She loves going to her classroom every morning and loves her teachers and snack time! She recieves speech therapy 3 times weekly at the school and we are in the process of refferal to the Speech Center at Children's.

Camilla goes next week for a checkup with Dr. Blount, the neurosurgeon that placed her VNS in Feb., and we hope to have a good visit with him. Camilla discovered how to pull on her VNS battery that is located to the front of her armpit on her left side and has managed to pull so hard that a wire is now visable in her neck under the skin. This is a cause for concern and we are worried that she has possibly disconnected the device, damaged the nerve it was attached to or ?????? We look for him to test the device and do x-rays next week. Please pray that everything will work and be OK and that there will be nothing that has to be 'surgically fixed' with this.

In a couple of weeks we will return to do the MRI that we were not able to have done during our hospital stay (we were bumped for a child with a newly found brain tumor) and then after that a follow-up with the neurologist to hear the results of that test and the 48hr EEG.

Camilla continues to be happy, otherwise healthy and a joy and blessing to our lives! We have so much to be thankful for-

children's hospital

2009-08-28T16:26:00.004-05:00

The words just don't seem to go together to me - Children's Hospital. Don't get me wrong I'm soooo thankful to have a place that focuses on healing children and to have a place like that so near to our home - we are very lucky. Somehow though I can't manage to get over seeing and hearing those two words together- Children's Hospital. Last week while we were in the hospital there were several things that I struggled with not only concerning Camilla being a patient there and what she was having to deal with but just the fact that anyone has to be in this place. If you ever have to go to CH (and I hope you never do) I recommend keeping your head down and don't speak to anyone until you get where your going! Ha - bet you'd bump into quite a few walls that way! But seriously, last week when I'd make my coffee run down the street or even to the main floor for the cafeteria I made the mistake of looking around. Looking around to see an ice cream truck parked in front of a hospital, an empty playground outside of the hosptial (all of the children are inside), the emergency helicopter continuously taking off and landing, a VERY upset family in the chapel, walking down the halls and hearing screams and crys, seeing 'quarantined' signs on doors of rooms with a crib in it, a Mother in the main lobby whose whole world had obviously just collapsed and a small funeral home van pulling up to the back of the hospital. I struggled with being identified as a "Children's Mom" 4 blocks away at Starbucks because of the band on my wrist and having to relay why my child was there to a stranger and then having to listen to a Mother say words like 'bone marrow transplant' and 'luekemia' about her son. It is so very difficult to erase these voices and images and then to think that I'm part of this group. I'm not an outsider looking in. I have a child with very serious medical problems and a very unsure road ahead of her laying in that hospital the same as the other Moms I see around me. That realization hurt the most - that and the fact that this will probably not be our last visit to this place.

Please bear with me - good days and bad - I promise to post about Camilla's tests and pics from our stay next! We have also celebrated her fourth birthday recently - pics to follow soon!

video from hospital-

2009-08-26T21:15:00.003-05:00

I'll be posting pics soon of our stay at Children's this week but I wanted to go ahead and post this video - it shows how the wires are wrapped and gives an idea of how she was confined to the bed for 48 straight hrs. She sure was a trooper!

medical update

2009-08-24T16:50:00.002-05:00

camilla is in Children's hospital until Wednesday-48 hour EEG followedby an MRI-please keep her in your thoughts and prayers

school days, school days, wonderful golden rule days...

2009-08-11T17:06:00.002-05:00

Camilla started school today! She loved going back to her classroom and seeing her teachers again - Mrs. Moore, Mrs. Morgan and Mrs. Campbell. She really didn't want to leave the house this morning and it took some enticing but once she got to the classroom she immediately began working on puzzles and meeting new friends. It's going to be a great year!

what an adventure!

2009-08-11T16:53:00.002-05:00

This past weekend Brandon and I took Camilla to Alabama Adventure for one last summer-fun blowout before school started back! She loved the water park, the train, the carosel, the mini ferris wheel and most of all the log flume! Sorry, some of the shots are blurry and my batteries died half-way through the day!

medical update

2009-07-29T16:26:00.004-05:00

OK - I have put this off as long as I can - time to do another medical update on Camilla. I love that so many people are concerned and interested to know how we are all doing and especially how Camilla is but to be honest, those have been some tough questions to answer this summer. The main reason for this very blunt, honest post about Camilla's situation is that I have been conversing through some of the online support groups and following other blogs of families dealing with similar situations and they are interested in Camilla's story.

For the majority of her illness (diagnosed with Infantile Spasms at 6 mo then Intractable Epilepsy at 12 mo) her seizures have been myoclonic 'jerks'. For Camilla this has meant that her upper body would stiffen and her arms would straighten for a couple of seconds during the seizure and then she would come out of it. At times these myoclonic jerks have come in clusters, lasted longer, caused shaking, caused 'brain fog' and caused her to be upset but for the most part these have not been 'severe' seizures (as if you can even rate something so horrible in the first place). She only went through one period at about nine months old where she began having multiple seizure types that invloved atonic, partial complex, abscense and myoclonic. Some of these were severe but, for the most part, ceased once we began the ketogenic diet. At the beginning of this summer Camilla's seizures began to change. Techincally they are still considered to be myoclonic but have worsened with their presentation. A bad seizure these days involves complete body involvement, last 20-30 seconds, may cause her to vomit afterwards, may cause her to cry out or moan during and causes her to be very upset, frantic and confused following. Needless to say this is a very disturbing event, not only for those watching, but for Camilla mostly. This week we began taking a new seizure med that we are very unsure about. Our neuro has pushed for months for us to begin this newly approved medicine, Banzel, and after all of our questions and research we are still so very unsure that this will help (however it is the lesser of our evil options at this time). At the last visit the neuro reconfirmed a new diagnosis that we have been dreading for years, Lennox Gastaut Syndrome. It is a very rare, severe form of childhood epilepsy and even though he claims that she is 'highly functioning' LGS it is still a devastating blow. He has scheduled Camilla for a 48 hr EEG and another MRI beginning on Aug. 24th. Please keep her in your thoughts and prayers leading up to and during these tests. They will be very difficult for her to deal with but we need this information to help determine our course of treatment.

Along with the very-pressing medical issues we are dealing with, we are also constantly concerned with her cognitive development, speech, motor skills, etc... Some 'side-effects' of having a child with neurological problems is their inability to 'shut down' the activity in their brain resulting in little to no sleep (for the past 3 months she has operated on an average of 4-5 hrs of sleep a night and 20 minutes during the day) and marked hyperactivity.

Through her illness we have endured many ups and downs. We have worried over medical condition, development, doctors, surgery, therapy, medicines, side effects, tests, diagnosis' and all the other 'usual' concerns. We hope and pray that this latest change will be just another of the temporary 'downs' on this roller-coaster ride and we hope the next 'up' will take us higher than she's been before. You see, we will continue to hold on to the hope that one day Camilla will be seizure-free, happy, healthy and leading a 'normal' life with no medical limitations.

Camilla will be 4 next month and as we prepare for parties and presents we realize that even though this summer has been a little more difficult and seen a little less progress than the last, we should still be celebrating because Camilla is a very happy, beautiful little girl who loves to play in her room, loves to swim and take a bath, loves to color, loves to laugh, loves to eat and loves her family. When we look at the 'big picture' and what we were told to expect at the beginning of this journey, we realize that she has come so far. She is such a little trooper through everything we have to put her through. She is such a stubborn, hard-headed little angel who I know will continue to fight these battles before her - and she will continue to amaze us with her grace, beautiful smile and contagious laugh in doing so.

family beach pics

2009-07-24T12:54:00.002-05:00

those of you who follow the blog that are interested in checking out the family pics we had made a couple of weeks ago at the beach can go to www.aimeereynoldsphotography.com and click on clients from there type in the password Camilla

we are so pleased with these pics - thanks Aimee for being so good to us

Boston-aka Bahstun,Beantown,Home of the Sox, etc...

2009-07-22T14:44:00.005-05:00

On July 8th Brandon and I traveled to Boston, MA with good friends Jennifer and Mark Bedsole. After our adventure to Yellowstone Park last year we knew we were in for a treat in Boston! We had such fun! Of course, the guys really enjoyed the tour and game at Fenway Park between the Red Sox and the Kansas City Royals. The Sox lost but we still had a great time at the historic park - we saw the Green Monster (and a homer hit over it) - sang our hearts out during the 7th inning stretch (see video) - and enjoyed the Fenway Franks and 'wada, aye-wada hea'! We enjoyed other activites like touring Beacon Hill (Cheers) and the Charlestown area, the adventures in the subway, Boston Common and the Public Garden, swan boats, good food, climbing the Bunker Hill monument (or laying in the grass), the Freedom Trail, Copley Square, visiting Harvard, hearing the GREAT accents, seeing the 'TALL ships' and so much more!!!! I love this city so much!!

patriotic pookie-

2009-07-21T16:04:00.002-05:00

Camilla had such a blast at the Freedom on the River festivities! She enjoyed riding in the Children's Parade (even though she missed Anderson this year) - she loved bouncing in the blowups - she loved the sno cones - and of course she LOVED the fireworks!!!

Elvis has left the building-

2009-07-21T15:53:00.002-05:00

He may have left this building behind but you wouldn't know it from all of the fans that still flock there everyday! Graceland was such an adventure and it sucks you in and turns mediocre fans into BIG fans before you leave those famous gates. Amy and I had a GREAT time - it's something I've always wanted to do-

round 3 - nkotb

2009-07-15T11:46:00.004-05:00

On July 2nd Amy Abrams and I went to see New Kids on the Block in Memphis (yes, I know it's the third concert in 6 months, but we are OK with it). This time we had 5-star VIP passes and we got to attend a meet n greet before the show! It was the best 'meet a rock star in three minutes' I've ever had! We got hugs from all and they were fun to meet!

still more videos-

2009-07-14T16:27:00.002-05:00

still more videos-

2009-07-14T15:01:00.005-05:00

more beach fun-

2009-06-26T16:25:00.004-05:00

Beach Fun

2009-06-26T13:48:00.007-05:00

We spent this past week in Orange Beach with Jennifer, Jason, Justin and Lindy. The place we stayed was awesome and we had such a great time! We spent alot of time at the pool, on the slides, playing put put, eating, shopping and more. Camilla learned to swim with her swimmies on and she LOVED the slides at the place. We also had someone take some family pics on the beach - I'll post those as soon as they are available or you can check out a sneak peak at www.aimeereynoldsphotography.com The slide show and videos below show just some of the fun we had-

!
and last but not least this rowsing video of Brandon and Jason playing wii tennis - it was just to funny not to post

It was an.....

2009-06-15T15:55:00.002-05:00

...itsy, bitsy, teenie-weenie, yellow, polka-dot bikini.... Camilla just loves her pool and her 'kini'!!She looks so cute with that belly sticking out over the bottoms! Just thought I'd share some fun pics!

messy - messy - messy

2009-05-27T13:33:00.002-05:00

We all have one of those pics of ourselves as a child being a messy eater - well here's Camilla's - messy and tired

Fun on the Farm!

2009-05-27T12:50:00.003-05:00

We attended the Driggers-Snell (Mom's Dad's side) family reunion over Memorial Day weekend in Brandon MS. Part of the weekend was spent gathering at the Nichols Christmas Tree farm where Camilla had a blast! We enjoyed getting to visit with all of the fam and hate that we don't get to see them more-

derby day

2009-05-05T15:32:00.002-05:00

Another GREAT year at the Kentucky Derby party - big hats, silly ties and great friends!

Schoolfest 2009!!!

2009-05-01T17:06:00.001-05:00

Zoo Fun & Other Stuff!

2009-04-27T14:20:00.002-05:00

Last Friday Camilla's class at Westside went on a field trip to the Montgomery zoo. Of course Mommy went along for the fun and it truly was a good day! Camilla enjoyed the zoo but was not really fascinated by any of the animals (except maybe the otters and flamingos) but she did love riding the train! We had a good time visiting with her class and their families and her teachers! She and Jordan especially had a good time! After the zoo trip we came home and were playing in the yard and that's when I discovered that Camilla is slimming up - I swear those shorts used to be snug!

One of the pics is of Camilla and Pat trying on each others shoes at the Sax in the City event. She is such a girly girl!

The other pics are of some friends and I in Gee's Bend. We took a short field trip of our own Saturday afternoon and got to see the billboards for some of the famous quilts and we even got to have our pics taken with the lady who made my fav quilt (it was one of the ones used as a stamp). She is 92 years old and just happened to be sitting on her front porch when we pulled up. She made this quilt featured on the billboard in 1936. This was definitely a unique experience.

DMB

2009-04-21T11:36:00.004-05:00

Monday night Brandon, Jennifer, Brandi, Kirk and I went to see Dave Matthews Band in B'ham. We had so much fun! Old Crowe Medicine Show opened for him - they were good too!

An Egg-cellent Easter!

2009-04-15T13:41:00.000-05:00

The Real Spring Break!

2009-03-31T15:05:00.002-05:00

Move over MTV - you ain't got nothing on Chuck E Cheese! We were in Nashville to visit Camilla's new doc during her spring break! We took her to Chuck E Cheese one afternoon and she had a fun time (this is where the real spring breakers go)! We also strolled down Broadway and 2nd Ave. in downtown Nashville-

NKOTB - Part 2

2009-03-23T09:43:00.003-05:00

OK - call us what you want - but we had a blast! On March 14th Brandi Boutwell, Amy Abrams and I went to see New Kids on the Block in Biloxi (yes this was the second concert in 6 months)! The concert was awesome - especially the view from the front row - it was worth almost getting kicked out! We met up with my friend Amy Watt and her friend Kelly Ishee while we were there and we all went to dinner, saw the concert and did a little NKOTB stalking (ya know, just a regular Sat. night)! Sorry for the delay in getting these videos up - enjoy! Can't wait to do it all over again in B'ham! 5-STAR

NKOTB videos

2009-03-19T11:45:00.003-05:00

Grown Man

Dirty Dancing

The Right Stuff

my boys-

2009-03-18T14:02:00.005-05:00

Jordan and Joe

Little Big Girl-

2009-03-12T16:26:00.003-05:00

I just wanted to post some fun pics of our 'little big girl'. While shopping in Target the other day she got into Cici's bag of apples and ate an entire apple while we were shopping. I had to wrestle it away from her for a moment just to remove the stem so she wouldn't eat that!
Since the weather has been nice, Camilla has loved getting out and playing the yard. She loves her Barbie jeep and her Dora bike, now if we can just teach her to make them 'go'!

Crazy cousins-

2009-03-04T16:09:00.002-06:00

This weekend we got the chance to visit with cousins Jake, Wessie, Gillian and Brantley at Cici's house. Brantley and Camilla are only hours apart in age so its always good to see him! We had alot of fun, especially watching the kids put on a show!

Strollin' with Superman

2009-03-04T15:55:00.003-06:00

Camilla and her super 'man', Anderson Eddins, went for a stroll at Foscue last week. What fun they had! Hopefully, they'll enjoy more play dates as the weather gets nicer and nicer!

Our little trooper-

2009-03-04T15:18:00.002-06:00

Camilla's surgery to implant the Vagus Nerve Stimulator was February 24th at Children's Hospital in Birmingham. She did great, she is always such a little trooper about the doctor visits, tests, surgeries and other procedures that we have to put her through. She came through the two hour surgery just fine and has recovered nicely at home since then. We are still seeing seizures everyday, in fact they seem to have worsened for the time being, but we are still hopefull that after adjustments to the device and the trauma of the surgery wearing off we will start to see improvements. Please continue to pray that this device will stop her seizures and help to reduce the amount of the medications that she is taking all resulting in improved learning skills and an acceleration in acheiving developmental milestones.

Be My Valentine!

2009-02-19T16:47:00.001-06:00

Camilla's Valentine's Party at Westside-

Camilla Update

2009-02-09T16:11:00.002-06:00

So many of our friends and family have been calling and asking and anxiously awaiting -along with us- for a date for Camilla's upcoming VNS placement surgery. I just got the news today and figured this would be an easy way to let you guys know that it will be February 24th at Children's Hospital in Birmingham. Also, we have scheduled an appointment with a doc who is known for his work in helping children overcome developmental disabilities as a result of vaccinations, through biomedical interventions. That appointment is set for March 16th in Nashville. Please keep our sweet, little girl in your thoughts and prayers as she endures this upcoming surgery and the tests and traveling that will come with both visits. Please help us in praying that these interventions will work to stop her seizures and advance her development. Thanks for your concern-

Tigers, Acrobats and Clowns, Oh My!

2009-02-04T08:49:00.002-06:00

Last Saturday we (the whole family) took Camilla to the Ringling Brothers and Barnum and Bailey Circus in Birmingham. The show was Zing Zang Zoom and it really was the 'greatest show on earth.' We ALL had a blast, Camilla especially! She got to go to the kids pre-show and try on costumes and play with the funny mirrors, she also got to try many new foods that day including icees, cotton candy, coke, etc... The show really did keep her attention, she loved the animals, fireworks and people flying across the civic center. By the end of the day we were all pooped, especially Camilla (check the last pic)!

My Birthday Cake!

2009-02-04T08:23:00.002-06:00

Last Friday was my 29th birthday;) and we spent it Birmingham with Kirk, Brandi and Stephen. We went to dinner at Brio where they surprised me with this awesome cake. After dinner we went to see 'The Molly Ringwalds,' a really cool 80's cover band. Be sure to check out the costumes on these guys. All of the 80's characters are there - Peewee Herman, the Karate Kid, Dee Snider (Twisted Sister) and one of the guys from Devo ('Whip It'). I had a wonderful b'day celebration!

Happy Birthday to both of us!!!

2009-02-01T21:06:00.002-06:00

Last weekend Jennifer and I took a GREAT mini-vaca to Atlanta! We had soooo much fun for her birthday (December 28) and my birthday (January 30)! We got to the CNN Center/Omni Hotel on Saturday and rested and then went to Two Urban Licks for supper. The next day our spa appointments (massages, facials, etc...)began at 12:00 noon and finished somewhere around 4:00 - talk about RELAXED. Then we got ready and headed to the 'Dancing with the Stars' show - it was so much fun to see the stars but we are bigger fans of the proffessional dancers. We got to see our favorie dancers like Max, Derek, Mark, Cheryl, etc... but we also got to see Lance Bass sing Bye, Bye, Bye, and Toni Braxton sang several (see video). After that show we found out that two of our favorite dancers Derek Hough and Mark Ballas (Ballas Hough Band)were playing at Hard Rock which was only 2 blocks from where we were staying! We went to see them and they were awesome. We got to talk with them and get pics with them and they signed my shirt ;) They were really cool and I can't wait till their cd comes out in March! Hotlanta is so much fun!!!