Sunday, July 31, 2011

medical update-

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

Tuesday, July 12, 2011

manic monday...

...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

Sunday, July 10, 2011

recent pics-

tests, tests & more tests

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-

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