quiet day-

Praise God - Camilla has had a quiet day. She has spent most of the day sleeping (an answered prayer after her restless night) and, with the exception of the motor mapping that had to be done today, she has not had to deal with many interruptions. The motor mapping was basically locating the areas of her brain in which her left facial and hand 'controls' are located so that once we are able to map the seizures we will know what can possibly be removed and what needs to stay. For now, Dr. Blount is content to monitor the head wrap and not do any further procedures to correct the leaks although Dr. Kim did note that with these leaks surgery would be better sooner than later due to possible infection. Other than these few details there is not much more to report today and hopefully our evening will remain uneventfull as well (unless of course seizures want to join us). We have appreciated today being able to just 'be still and know that HE is God' and remember that his timing is perfect. "For I know the plans I have for you" declares the Lord, "plans to proper you and not to harm you. Plans to give you hope and a future." Jeremiah 29:11

bumps in the road...

Today has been a VERY ROUGH day for Camilla. She is not wanting to eat the applesauce that contains her meds including her Tylenol and Motrin and she is feeling more pain today due to that fact. Her right eye is swollen almost entirely shut and she is very agitated with all of the wires, monitors and IV's on her body. Around noon it was found that her drain was not working properly and her head wrap was becoming saturated with blood and fluid because it had no where else to go. Dr. Miller (Blount's resident) came in to replace the head wrap and once it was removed they discovered that the area around the grid wires was pulling open and needed stitches. Our options were to take her back to the OR to stitch it up under general anesthesia (prolonging possible seizures), give her pain meds through her IV and do the stitches here in the room (prolonging possible seizures), numb just the area around the wires with 2 shots then do stitches (shots would burn)or do stitches without anything. Unfortunately for several reasons stitches without anything was our most logical option. It was horrible - by far one of the most difficult things I've ever had to do - to hold her down (along with 4 others) while he put 2 stitches into the top of her head. And let's talk about her head - the incision is at least 12" and too many staples to count running across from ear to ear, the drain is right at the top of her forehead and about 8 large grid wires that seem to be 'growing' out of the crown of her bald little head. So needless to say, after the stitches, the rest of her day has been filled with lots of pain and frustration. We are still waiting on seizures to return. Surgery is definitely not tomorrow and we are hoping she begins seizing soon or we are looking at pushing back the originally scheduled surgery date of Tuesday. Specific prayer requests right now include pain relief, eating and drinking and seizures to start soon. I had planned to share more details but from the time I started writing until now Camilla's head wrap is showing signs of more blood and fluid. Dr. Miller is on his way back down. Prayers please...

first day post op-

My sweet Camilla - she is such a trooper. Yesterday was such a long day. Surgery lasted about 6 hours but "could not have gone better" according to Dr. Blount (surgeon. He removed a portion of the skull covering the right hemisphere (frontal and parietal lobes) and placed approximately a hundred electrodes into and onto the brain. After 'loosely' replacing the skull and wrapping her head up tight she has a large 'ponytail' of wires that are having to be closely guarded (along with a drain). These electrodes will now monitor precisely where the seizure activity is originating. The original plan was to monitor these for 7 days with the resection surgery being planned for next Tuesday. The report we recieved immediately following surgery was that there was already activity detected in several areas (which is unusual while still under the effects of general anesthesia which normally supresses seizure activity) and there has been talk of moving the resection up to Friday if they can get the information they need before then. This 'information' is based on her having seizures. We need typical seizures soon in order to move the surgery up but if not we are prepared for surgery on Tuesday also. Coming out of surgery yesterday she looked perfect. Her coloring was good and she was not swollen at all. Today the swelling is setting in and she has been dealing with pain and nausea through the night and the most part of the morning. She has required Zophran and Morphine and did require additional blood this morning but now seems to be feeling better and is more active. It has been amazing to me the amount of constant care that has been required since surgery. We are in the Burn Unit which is another critical care unit but we are allowed to stay with her all the time (as opposed to PICU - PRAISE GOD) and she does have a 'one on one' nurse as well. Our night last night was very busy and long due to the constant care that I mentioned. They were continually changing tubes and wires, giving meds, checking vitals and on and on which made for a sleepless but 'well cared-for' night. She is finally starting to drink and eat well (and keep it down) and is able to take Motrin and Tylenol by mouth and the pain is starting to subside which is good news so that we can discontinue the Morphine as it too can further inhibit seizure activity. As I type Camilla is playing with her ipad and eating green beans and mashed pototoes. She has been up (standing) several times today and seems to have good strength a stability still - even after showing initial signs of mild weakness in her left arm. Specific prayer requests at this time are for her continued pain relief, comfort and tolerance; seizures to resume soon (I know it sounds crazy); for clarity in upcoming decisions; and continued peace for the entire family. There are NO WORDS to describe the outpouring of love, support, encouragment, gifts and prayers that we have recieved over the last week. Please know that we are reading and treasuring each and every one even if we are not able to immediately respond. From the bottom of our hearts - THANK YOU, THANK YOU, THANK YOU for your kindness and for loving our sweet 'baby angel.' I will hopefully update again later tonight. "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

surgery update-

Surgery is over and we are waiting on the surgeon to come out and update us on the details. We were told that she is good and everything went as planned. PRAISE 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

surgery update-

Camilla was taken back to the OR about 8:30 this morning and the surgeon got started about 10:30. We are expecting about 3 more hours until she is in recovery. So far, reports are good and things are going as planned. "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

packing, preparations, people & prayers

packing - I have been packing for a week now and I still have so much more to do but I should have no problem being ready by Monday or being gone for a month. My only problem will be listening to Brandon complain about how much I pack :) preparations - From arrangements for Crosby to paying bills and cooking extra dinner to ironing Brandon's work clothes for when he's back at work and we are still at the hospital I have been very BUSY with preparations. The 'busy' has been a very good distraction though, it helps me not to dwell on the 'what ifs' of the next few weeks. people - People are already pouring out so much love for us. We have been recieving cards, letters, gifts, calls, emails, texts, etc... ALREADY and it just amazes me how people are reaching out...ALREADY. God is love and you people are definitely his hands and feet at work. I'll post pics once we are at the hospital of these but the 'well wishes' for after surgery from Camilla's classmates written on rainbows have been so moving... words written by children her age reading 'you are cured', 'you can talk to us', 'you are not scared' move me to tears every time I think of them. prayers - We already feel surrounded by and lifted up by prayers. Peace is setting in and it is a welcome friend. Thank you all and please keep them coming. We know without a doubt that these next few weeks will be the most difficult we will ever endure. We also pray that they are some of our most dear - ones in which we will see miracles take place, ones in which dreams will come true and mostly ones in which God will be glorified. Specific prayer requests include peace for all of us but especially Camilla; comfort, understanding and tolerance for Camilla; safe and successful surgeries; clear and easy decisions; and no seizures following the last surgery. Camilla - She is such a happy child. The last few days have been filled with so much laughter and other than her morning fits (she's not a morning person - she gets it from her Mommy) she is smiling and playing most of the day. Except, of course, during seizures and they are pretty bad right now. They have moved to the severe catagory and are lasting longer than usual and are very disturbing to watch even though we are only seeing 4-5 per day. We have been talking to her about the surgery and she looks at us with so many questions in her eyes as we explain things to her - especially the part about her not having any hair for awhile after this (this will be especially difficult for her vain Mommy too). Thank you all so much for your prayers and for going through this journey with us all. If you want to get my (more frequent) facebook updates you can friend me at Kelley Jacobs Smith. Schedule for now is preop work at Children's in Birmingham at 2:00 Monday and return for grid placement early Tuesday morning, resection surgery is set for the following Tuesday. "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

finally...

Finally...I am through redesigning the blog. I still have a few little things to add like the music and a slideshow of old pics but all of the important stuff is done. Whew...that was one of the BIG things on my list of 'to do's' before surgery. And yes we are counting down the days till surgery. We will leave Monday, March 19th to go up and take care of all of her pre-op work and will arrive at Children's early Tuesday morning March 20th. I will try to post a more thorough update later today. During surgeries and the hospital stay I will be updating here on the blog as well as on facebook. If you would like to get my fb updates you can friend me at Kelley Jacobs Smith. Specific prayer requests: successful surgeries; understanding, comfort & tolerance for Camilla; clarity & peace regarding all decisions to be made; no seizures following surgery. "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