finally...

I'd like to apologize - I've been slacking on my updates and there's really no good reason. Except, of course, if you count that fact that it's summertime and my babies and I have been too busy having fun to do much else! So far our days have been filled with the park, slip-n-slide, swimming, Vacation Bible School, sleeping late, the zoo, golfing, fishing and naps! I can't wait to see what the rest of the summer holds :) As for Camilla - SHE IS DOING GREAT! We still have not seen any seizures and even though there was a small amount of activity in her right parietal lobe on the EEG we are thankful for 2 1/2 months of seizure-freedom. Once we reach 3 months we will be celebrating the longest she has gone without seizures since she was 6 months old (the one other seizure-free period was at the beginning of the Ketogenic Diet when she was about 10 months old). She has been sleeping so well these days now that the 'white noise' has been quieted in her brain that in the past has robbed her of sleep and so many other things. The first week out of school she was sleeping until 10:30 each day and she is now averaging waking about 9:00 each morning. The general rule of thumb in our house - if Camilla's brain is sleeping DON'T WAKE IT UP! I really believe her body and brain are catching up on some much needed rest. During the day Camilla is showing signs of being more aware than she ever has been before. She just seems to be more 'present' in the moment with us and seems to be processing our words, asessing situations and reacting so much more typically. These characteristics are allowing her to make great strides in many areas but the most noteable being in potty-training (and Mom lets out a big WOO HOO after almost 7 years of diapers). Camilla is consistently letting us (and others caring for her) know when she needs to go by saying 'abath'. We are to the point where we are beginning to trust leaving the house with her wearing panties and there have been very few accidents to date. We are so proud of her and she is proud of herself as well. There are so many positives to mention that I couldn't possibly remember them all but I'll try to list a few: she is more steady and not shaky, she laughs a lot, she plays well and interacts with Crosby, she throws fits when she doesn't get her way (yes believe it or not this IS a positive), she is learning to dress herself, she continues to eat well, she helps me around the house (throwing things away, washing dishes, cleaning up spills and loading/unloading laundry), she is playing with toys appropriately these days, and the list could just go on and on. It seems like every day we are finding new accomplishments, large and small, to celebrate. I will mention one negative, Camilla has been very quiet these last couple of weeks. We are having to provoke her to get her to say much of anything and we certainly aren't hearing any new words. Even with the potty-training, the first couple of weeks she would constantly say 'abath' but she is now coming and taking me by the hand and leading me or just getting right in my face and staring in my eyes to let me know she has to go to the bathroom. We are very confused and frustrated by this silence. Back to the positives - she is adding more signs to her vocabulary. She will now regularly sign 'please' and 'thank you' in addition to her usual 'more' and 'eat'. We will begin adding two more new signs next week (it seems that focusing on one or two at a time for her to learn and do works best even though I do a lot of signing throughout each day to label objects and actions). We continue to be on the same medications as before and are waiting and watching with anticipation as her hair grows longer everyday over the completely healed scar. I think this about sums up her progress for now. For all of my epilepsy moms I did want to let you guys know that Camilla's resection was officially a right temporal lobectomy and right frontal topectomy - just FYI. Also, several posts back I asked you guys to pray for how our family would properly share Camilla's story and use her for His glory and He has answered our prayers. We feel we are being led to speak about our journey with Camilla to various different groups and organizations and God is opening these doors. Our first speaking engagement will be to share our testimony with Fairhaven Baptist Church on June 24th at the 6:00pm service. Brandon will also be speaking at the Brotherhood Breakfast on the 3rd Sunday in July and there are several other opportunities pending for us together and seperately. We plan to share the details of her diagnosis, the challenges that we've faced, how we've gone from enduring to enjoying life with a special needs child and how God has been there all along..."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

a stroll down memory lane...

surgery pictures...

please know that I spared you the gruesome pics with the wrap off and during surgery...you can thank me later...

cheese...

Camilla has gotten to where she will do a really 'cheesy' grin when you snap a picture and say 'cheese' - here she is 'cheesing' it with Dr. Blount(neurosurgeon) and Gigi(his nurse practioner)at her last check-up. **I'm trying to get the blog up-to-date, pictures and all, and I think I finally figured out the problem I was having uploading pictures so hopefully I will get caught up and back to posting regularly :)

and the verdict is...

We spent yesterday at Children's for Camilla to undergo a 2hr EEG, her first since surgery, to determine what is now going on in that pretty little head! It was very difficult to hook her up for this test (as usual) and we had to use a papoose board for only the second time ever. Once she was hooked up though she was calm and happy even smiling and laughing to pass the time. After the test we saw Dr. Kim who gave us the results. The verdict: there is still spiking in the right parietal lobe. Are we upset at all by this news? Heck NO! We still have not seen any seizures and Dr. Kim stressed that this activity could very well dissipate by her 6 month EEG. Realistically we know that any abnormal activity is not good news but we don't really put our hope in EEG's now do we? "My hope is in you Lord, all the day long. I won't be shaken by draught or storm..." Anyone else like that song too? I plan to do a very detailed update tonight to brag on all the great things going on with Camilla right now! "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

Run/Walk/Roll a 5K for Camilla

I just wanted to let everyone know that some sweet people at our church have gotten together and are hosting a 5K for Camilla this Saturday, May 19th. Registration begins at the Demopolis City Landing at 7:00am with the 5K and Kids Fun Run beginning at 9:00am. The entry fee is $20 and includes a t-shirt. If you need more information or would like to participate or volunteer you can leave me a message here or email me at kelleyjsmith@yahoo.com Thanks to everyone involved and Camilla can't wait to be there and cheer everyone on!

quick update-

Bear with me - I've been trying to update the blog for four or five days now with some pictures and I'm having some space 'issues' with blogger. Hopefully I will have that resolved soon and will be able to post the slideshow from surgery and do a thorough update on how Camilla has been doing. For now I hope you'll settle for a quick update - she's GREAT! No seizures so far and the only real 'issue' we are dealing with at this time is the fits that she is having daily. These are 'I'm not getting what I want' and/or 'I can't talk to you to make you understand what it is I want/need/is hurting me' fits and since she is approaching 70 lbs., is very tall for her age and is stronger than most adults I know it is becoming increasingly difficult to deal with her during these fits. Please pray for this specifically - pray for her frustration, all of our understanding, physical and mental strength for Brandon and I and for us to find an effective way to deal with her when these fits arise (which has been 2-3 times daily for the last several weeks.) Hoping for a detailed update soon and pictures! Oh and Happy Birthday to Crosby - he turns 2 tomorrow:)