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.
4 comments:
Kelley,
I did not realize until now that you had a blog going. I am so glad you do...I had no idea what all was going on and what all you and your family are going through on a daily basis! Thank you for posting this as it will make me pray that much harder for you and your family. I cam not imagine how exhausted (mentally and physically) you must be at times. I pray God continues to give you strnghy and endurance and guides the doctors to finding help for your beautiful Camilla!
Kelly, I have been and will continue to pray for your precious Camilla and also you and your husband. Your faith is very inspiring considering all that your family has been through. May God Bless you with peace and happiness as you await Camilla's surgery and recovery. Vicki Barnes
Kelley and Brandon you are constantly in my prayers as are your beautiful children. If there is anything you ever need please just ask. I am always just a phone call away. Mark aka "screech" didn't start having seizures til his senior yr of high school and sissy when she was living had her share that started in infancy. this is Evelyn my number is 334 289-3370 or 334 654 1511
I had to laugh at your "pitter patter" comment. Sophie is the same way. I hear her little footsteps somewhere between midnight - 2am every night and then she crawls into bed with us.
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