hope...

Hope...wasn't it too perfect that our Sunday school lesson was entitled 'A Living Hope' this past Sunday. The words from Max Lucado just seemed to jump off of the page, "It may be just a coincidence that 'hope' and 'cope' rhyme, but it's a happy coincidence. If we can't see beyond our immediate circumstances in life, the outlook quickly turns to a shade of despair." My hope is in you Lord and I thank you for the promise of "...hope and a future..." I am so full of hope for Camilla and her future. She is doing GREAT! She is eating and sleeping well and seems to have regained most of her strength and ALL of her silliness :) We have not seen any seizures and we are very thankful for the last 16 seizure-free days (the record for her was when she was on the Ketogenic diet and went 3 months seizure-free...she was 1yo). Her incision seems to be healing well and so far we don't seem to be having the 'scabbing' issues that we had with her last surgery. We go for her first checkup with Dr. Blount tomorrow and will see what he has to say about how it is healing. We are still having to clean the wound twice daily. As for her progress in other areas: she seems to be processing language faster; she seems to be saying some new sounds-especially vowell sounds; she has picked up 3 new signs and will do them when prompted - thank you, please and more; she is showing some progress in potty training - PRAISE GOD for every accomplishment large or small :) Overall, like I said before, Camilla is doing GREAT. She has only had one day of not feeling very well since we have been home from the hospital and after some Tylenol she perked up quite a bit. I remain AMAZED at how well she has done through this whole process-she is such a trooper! We visited her school yesterday and she was thrilled to see her friends and teachers again - we will find out tomorrow when she can return to school. I want to thank EVERYONE for the outpouring of love and support, we are overwhelmed with the kindness that has been shown to our family. Specific prayer requests include: healthy healing for her incision and strength and patience for all during cleanings; no seizures; tantrums to disappear; delevopment; and for our entire family as we live and share Camilla's story for the glory of 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

...from whom all blessings flow...

PRAISE GOD! Camilla is doing GREAT! PRAISE GOD! Who would have ever guessed that this time last week my 'baby angel' was lying in Children's hospital with a blood clot on her brain, not able to do much more than sleep and her doctors were using words like 'urgent', 'serious', and 'in trouble' to describe her situation. Not to mention too, that she was facing a major surgery the following day. Imagine that it hasn't even been a week since removing part of her brain and today, here we are, at home and she has been riding the golf cart, riding in her wagon, coloring with sidewalk chalk and even went to a resturant to eat Mexican food (one of her favs)yesterday. I will try to video her tomorrow and post some of the different things she is keeping herself busy with these days but it is absolutely AMAZING! God continues to have his hand on Camilla and so far we have seen no seizures, an amazing calm and lots of smiles. She is loving wearing hats but feels of her head often and then looks at me to say 'WHERE IS MY HAIR?' Camilla's appetite has returned fully (another praise) and she is no longer on ANY pain meds (even Tylenol or Motrin) just her regular assortment of anti seizure meds (which FYI she would have to be seizure free for at least one year before they would consider weaning some of those). Right now the only real daily challenge (besides healing and resting in general)is that we have to clean her incision twice a day with soap and water and considering the problems we had with scabbing-over (prevents new skin growth and increases chances for infection) with the Corpus Callosotomy incision we are having to be very thorough and diligent with our cleanings. Last time they almost took her back to the OR to remove scabs after about five weeks and we certainly DO NOT want to find ourselves anywhere near that situation again. So please pray for her comfort and patience during these cleanings and our strong stomaches and arms that have to hold her down and scrub :( Let me say again and again, thank you ALL for all of the prayers that have carried us through this time, they have been felt in a very real way. Thank you too for all of the gifts, cards, donations, food, messages, bracelets, t-shirts, texts, videos, songs, verses, etc... that have found us during these last few weeks. Even though we have not been able to respond to each gesture immediately, please know that each and every one seems to reach us at just the right moment to provide a smile or encouragement - whatever the case may be. What wonderful people we have been blessed to share our lives with - that would reach out to us during this difficult time in our lives - some we have known forever and some we are just meeting through this process. THANK YOU ALL for the blessings of your kindness. We continue to hold on to our hope and know that HIS perfect WILL will be done - whatever is to come '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

are you kidding me?

Home??? Didn't we just have major brain surgery Monday??? As I said before, God is showing off!!! As long as she has a good 'first-part' of the day today she will be discharged this afternoon. I'm so thrilled but also a little nervous at it being this soon. Camilla's swollen eyes started to open late yesterday afternoon and she was able to get up and do some walking. She even walked to the activity room here in the Burn Unit and was able to play with Crosby for about 30 minutes. We are about to try to get her up this morning to see if she will walk some more or maybe go for a wagon ride around the hospital. She is dealing with a little more pain today than yesterday but we were able to get a good dose of pain meds in her about an hour ago - she is still giving us major trouble taking all meds at this point.When Dr. Blount made his rounds a couple of days ago he said that she needed to be eating and drinking well, managing pain well and for the swelling to go down enough that she could see in order for her to go home and she has definitely met those hurdles. On one of Dr. Blounts visits he pulled out his cell phone and asked if we had strong stomaches, and we do, so he proceeded to show us pics he had taken during surgery showing the grids, the blood clot and the parts that were resected - WEIRD - not many people can say they've seen their child's brain! So anyway - no time for a long post - there's packing to be done :) "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

purple day-

Wasn't it just too perfect that God moved her surgery to 'Purple Day' - a day celebrated once a year that creates awareness for epilepsy - because He sure has been using her to create awareness for epilepsy for about 6 1/2 years now. Thank you to everyone who wore their purple clothes, accessories, Camilla bracelets, etc... Now to pick up where we left off. During the day Sunday Camilla was fidgeting, restless and generally miserable but thankfully her vitals stayed strong and the steroids they were giving her kept the blood clot in check to hold her for surgery on Monday. Dr. Kim came in and was able to complete the motor mapping with few complications although the stimulation did trigger some seizures. Ativan was given following the mapping to be sure that no seizures would follow and to allow her body to get some rest prior to surgery. Camilla slept the better part of the afternoon, evening and into the night. As 2:00am rolled around Camilla began to wake and grow more and more aggitated as the morning went on, since she was an 'add-on' surgery we knew they would not be taking her back until around 11:00am for sugery. Well in those few hours leading up to surgery Camilla was as miserable as I have ever seen her. She was fighting, thrashing, screaming and crying constantly. Her head wrap was itching and she had tangled the wires coming out of her head with all of her moving and there was no consoling her pain and frustration. Between the hours of 3:00am and 11:00am she was given Benedryl, Morphine, Ativan and 2 doses of Versed (a pre-op drug to cause drowsiness and relieve anxiety)and none of these worked to slow her down, she was still fighting and having to be held down. Finally about 30 minutes before they came to get her for surgery she fell asleep - I'm sure it was from the shear exhaustion of fighting for so long. Surgery began at 1:20pm and she was returning to her room at 6:00pm. It made for a long, anxious day (but remember 1 Peter 5 6-11) but we were really just so excited to know that after this surgery we could begin the journey of healing. Coming out of surgery she looked so much better than when she had gone in - she was sleeping peacefully and during her moments of awakening her eyes were clear and free of pain and frustration. She was able to take her meds with a good bit of applesauce and did not experience any nauseau. She slept soundly most of the night last night, only waking for meds (which she is taking willfully now), bloodwork and vitals but immediately going back to sleep. She was taken down for a follow-up CT scan this morning at 5:30 but the resident has already been by to say that all looked good with that test. She is showing that her Sodium is low (common after this surgery) but they are taking the steps to correct that and will recheck at noon. We are still waiting on both Dr. Kim and Dr. Blount to do rounds today. Camilla really 'woke up' about 8:45 this morning and she was able to take her meds and she ate a whole container of yogurt and is drinking well this morning also. Our challenge for the day: her face is so swollen that she can't open her eyes at all. It is difficult to tell when she is sleeping or awake and expectedly she is scared and is having trouble understanding this even though we are constantly talking to her and telling her what is going on, who is in the room and that this will pass soon. Overall, it is easy to see that she feels so much better than she has all last week and that is such a blessing. I feel so much better knowing that she is on the mend whereas before we were just waiting on so much to happen including seizures, surgery and of course she also had the wires to contend with. Before we talk about prayer requests let's talk about praises: successfull surgeries - check - peace for all family - check - no seizures (maybe y'all prayed too hard about that for last week haha) - check - isn't our GOD AWESOME! By far though the biggest praise we have to celebrate is that the 3 areas that were resected were NOWHERE NEAR her motor strip so we did not even have to make the difficult decisions that were expected regarding compromises to her physical abilities - A.MAZ.ING GOD! Prayer requests: swelling to go down soon and Camilla's understanding and patience until it does; no seizures; eating and drinking to return to normal soon; and for God to reveal his plans as to how we all (including Camilla) are to share our journey and experiences to tell of his grace, patience, mercy, love and salvation over the last six years.

the truth-

So after the events of last night (see below) Brandon and I debated on whether or not to share everything that is going on because things are very scary and very touch-n-go at the moment but we decided that people have been so kind and generous and caring and that if we want to accurately tell her story we must tell the whole story. Around 2:00pm yesterday Camilla's EEG began showing seizure activity although we were not noticing and clinical presentation (not seeing her body react in any way). As the day went on things became more frequent and stronger and about 8:00pm she had 2 seizures that looked strangely different than anything we had seen before. They lasted for about 30 seconds and her face did nothing but twitch in all different directions the whole time. It was very frightening for us because we are not used to her seizures lasting that long. Dr. Kim (neuro) was called and she logged in from home to review the EEG and video to confirm seizure activity. After about 30 minutes of watching our nurse on and off the the phone she came in to say that indeed Camilla was having seizures and there was cause for concern because of the atypical presentation. For one thing the seizures were effecting the right side of her face and if you'll remember Camilla has had a Corpus Callosotomy (right and left hemispheres don't communicate anymore) and thus far has only shown activity in the right hemisphere of the brain (where the grids are) which controls the left side of the body. So how could she be seizing on the right side of her body - red flag. Dr. Kim also noticed that according to the EEG Camilla had been seizing continually for over an hour (not a clinical presentation) so she immediately ordered a dose of Lamictal to try and stop the seizure activity but had Ativan brought in just in case Camilla began having a tonic-clonic/grand mal seizure that lasted over 5 minutes. Before we could even finish giving Camilla the medicine the techs from radiology were in our room to take her down for a CT scan. Upon returning from the CT scan Dr. Blount (neurosurgeon) was standing at the nurses station reviewing the results. The verdict: Camilla has a blood clot that is located between the grid and the bone flap and we had some decisions to make quickly. Our options were to 1)go in immediately and get the clot out and we could leave grids in (since we have not gotten enough correct monitoring of her seizures) or we could take everything out, wait 10 days and start all over 2) wait until we have enough seizure monitoring to do the resection surgery or 3) do surgery Monday and give a resection our best shot. We (mostly Kim & Blount) chose option 3. We do not feel comfortable waiting past Monday to correct the clot for fear of it causing further damage. We don't want to put Camilla through any more surgeries than are absolutely neccessary and we don't want to come this far without having accomplished something. The doctors feel confident about 3 areas that have continued to show 'activity' since immediately following surgery. Would we love to see a typical seizure in order to see if there are any other areas affected and to see how these three areas react - sure - in a perfect world but we don't live in a perfect world. We knew there would be tough decisions, we know this one is not our first and won't the the last on this journey but this is what we ALL feel led to do. One thing to note is that we are monitoring Camilla like crazy today (I really don't know another way to describe it) they are watching everything and if she starts to show any deterioration in her vitals or her alertness (meaning the clot is causing problems) we will drop all plans and be in the operating room within the hour to pull everything out (and would start over in 10 days). So there you have it - the truth, the whole truth and nothing but the truth. This is Camilla's story - this is our journey. So how is everyone doing - we're good - no really - we're GOOD. We can feel God at work in the midst of this situation and she is HIS child and He is leading her care. Of course there are tears, we are human afterall but there is a peace that passes ALL understanding surrounding us. God is giving Camilla an amazing testimony and we look forward to how He will continue to use this little girl for His glory (remember - He has plans for her hope and her future). In searching and reading, these verses always find us and touch us: 1 Peter 5 6-11 "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." I will continue to update as possible. We covet your prayers during this time - I'm not even clear on the specifics to ask for but just how God leads you. "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." Jereimah 29:11

family pic-

Camilla is still sleeping a lot today so I had a free moment and thought I'd post this recent family picture. We had them taken in February because we wanted some done while Camilla still had a head full of hair :) Aimee Reynolds took them and she did a fantastic job as usual! Thank you Aimee! And thank you again to all of the generous friends who continue to give gifts, contributions, prayers and loving words of encouragment. We appreciate you ALL so much. We are still waiting for seizures. Camilla is growing tired of the hospital bed and getting restless on top of dealing with smaller issues such as a reaction to some leads on her back, leaking head wrap and the drain that has migrated and is now hanging in front of her eye. Praying for seizures to begin soon so that we can do the next surgery on Tuesday but we know that God is never late and His timing is perfect. Afterall, He sees the 'big picture' and we don't. "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

shirts-

A group of friends and LoGo Pro have gotten together a project to make t-shirts for Camilla in order to raise awareness for epilepsy and donate funds to help with her medical expenses. This is the design that will appear on the shirts (design by Kirk Brooker). To order shirts please contact LoGo Pro (located on Strawberry Street behind Colony in Demopolis) or Michelle Etheridge at 334-654-1890. Shirts are available for a donation of $15. Thanks to all who helped get this project together - you make me smile.