fear not...

 "Fear not, for I am with you..." Isaiah 41:10

Fear can be so many different things. Fear can be gripping, all-consuming, intimidating and even sickening. It can prevent action, cause failure and be devastating. Fear can also be motivating and it can be overcome. Fear is something that I've been struggling with lately in many areas of my life. Mainly though, the fear of approaching Camilla's one year anniversary of her grid based/resection surgery/one year seizure-free anniversary. Why fear you may ask? Well, because things are going so well.

Strange huh? You'd think I'd be dancing for joy everyday and to a certain extent I do. If you've followed Camilla's story for any length of time you will probably remember me sharing about consciously learning to find joy in suffering and although our circumstances now are not 'suffering' by any means, I'd still call them 'extenuating' at best. But I am now on a whole new journey of finding joy in happiness and believe it or not it has been a concerted effort as well. Why? Well mainly because of fear. I know what 'suffering' looks like regarding this situation. We spent 6 long years and 4 brain surgeries there and the fear of returning to that place can be all of the adjectives listed above plus many more.  The idea of approaching her one year post op tests and battery of doctor visits has been downright frightening at times. Things are finally smoothing out somewhat and to think that one test or a change of medication or ??? might disrupt our new calm has kept me on the verge of panic over the last few weeks. But at every turn, just like during our time of suffering, I am reminded of God's promises and God's plans. "Be anxious for nothing, but in everything, by prayer and supplication, with thanksgiving let your requests be made known to God." Phillipians 4:6  This verse along with the one listed above and many others regarding fear have been 'jumping out at me' almost hourly since my fears began to set in several weeks ago. And I know that these verses, devotions, songs, speeches, books, articles, etc... addressing fear are all God's way of assuring me that He still has 'plans for our hope and future'.

Soooooo..........how do things actually stand? Well, her one year post op EEG was last week and it showed 'no sign of epileptic activity'. PRAISE GOD! Her visit with Dr. Kim (neurologist) went very well and we are cleared for yearly checkups from here on out! Are you kidding me? Yearly? We have been seeing these people every three months (at least) for the last 7 years! We've gotten to know them so well I think I'm really going to miss them - but not too much :) However; we will be missing Dr. Kim in the long run. She is relocating to another state (another source of fear) and we once again begin the process of finding our perfect epileptologist. To finish the news from this visit we will keep all 5 daily meds the same for another year (she is weaning off of them as the dosage is reduced as she grows) and we will prob begin removing them this time next year.

Camilla is having some other minor issues. In fact, she will be having a minor surgery at  Children's in the morning to clean out severely impacted earwax in both ears while under anesthesia. This has been an ongoing problem for Camilla since a very young age but her ENT said this time it was most definitely affecting her hearing (most likely she hears as though she is under water). We are actually quite excited to have this problem corrected because hopefully this will have a very positive effect on speech.

We are also continuing efforts for occupational, physical and speech therapies. She will be evaluated for an augmentative communication device on Tuesday of this week and again we are very excited as this may open up other forms of communication for her.

School is going well. Her hair is getting so long and she is getting soooo tall. She and Crosby are just like typical brothers/sisters they are so kind and helpful to one another at times and in the next breath will be fighting to the death over a toy. Her 'fits' have decreased drastically in severity and frequency (we suspect because she is feeling better and is able to communicate better). She is potty-trained for the most part but does still have a few accidents here and there. She is very affectionate. She is very funny. She is adding new words almost daily. She is loud. She has the silliest laugh. She is happy.

The actual one year anniversary of surgery (and last seizure) is March 26th - National Purple Day for those of you who support epilepsy awareness - and we will be planning a BIG celebration for that day. Although technically our 8 day trip to Walt Disney World last week was the 'official' celebration and I'm sure the one the kids will remember most. Camilla had such a blast. If we mention Disney she'll start repeating over and over 'Di-Ney, Di-Ney'. I'll try to post pics soon.

Prayer requests:
successful surgery tomorrow
Camilla to remain seizure-free
Camilla to continue progressing developmentally
increased communication (whatever form that may take)
fears to be calmed
new epileptologist

Thanks continue for each and every one of you who offer up prayers and support us. Thank you for walking this journey alongside our family.

PS Last week after her EEG we ran into Dr. Blount (neurosurgeon) on the crosswalk and he gave Camilla the biggest hug and after a quick update and watching her he seemed genuinely moved by how well she was doing. He also noted that at the statewide walk for epilepsy last weekend that he had worn Camilla's tshirt. I sure wish I had a pic of that to share :)

PPS God is still leading us in the direction of sharing Camilla's testimony with others. So far this has included church testimonials, radio, men's gatherings and women's luncheons. We have 2 events booked for the next two weeks and have had more inquiries. I also am planning to attend an event in the summer for Christain speakers/writers (still trying to figure if I am being lead to one or the other or both). We are trying to remain ready and obedient.

"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

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looking back...

I know - I know - it's been way too long. I have been 'not so silently' scolding myself for the last month now because I have failed to keep my promise of updating more regularly on just how great Camilla is doing. For future reference the mantra 'no news is good news' apparently fits concerning this blog :)

So as I sit here tonight, on my 35th birthday, reflecting over the past year I can't help but think how it has been, by far, one of the most difficult of  my life. As I pause to remember just how difficult, my mind is immediately overtaken by the memories that make this past year, by far, the most blessed of my life as well. Difficult because Camilla underwent her 3rd and 4th MAJOR brain surgeries and all of the worry, anxiety, stress, fear and sadness that you might imagine would go along with such events and blessed because she remains seizure-free (10 months and counting) and we continue to feel the love and grace of wonderful friends and family, a supportive community and above all God who has poured out His peace and comfort in abundance over the last 12 months. As I looked in the mirror tonight I couldn't help but notice that the reflection has changed drastically over the last several years. In fact, I'm pretty sure the last 7 years have aged me about 15 more than I'm rightly due. Instead of the word wrinkles I think I'll use the term 'battle scars'.  Oh well, either way it's much easier to deal with since Camilla is doing so well now.

And she really is doing well. 4 days ago we passed the 10 month mark of being seizure-free. Whew - what an accomplishment for her and what a relief. We are busy planning her 1 year seizure-free celebration - Walt Disney World here we come! We will be going in February (a little early we know but we're optomistic) and I can't wait to share how much Camilla enjoys herself on this trip. We are also celebrating many accomplishments as far as development is concerned. She is adding new words almost daily (still single - mostly labeling or request words - no conversation just yet) and in the last few months we have heard 'Dada' and 'Mama' almost daily :) She has learned a few new signs and is much more consistent and appropriate with the words from both her mouth and hands. There have been many 'aha' moments concerning very small aspects of her development - most too small to recount here but when put together display a child who is 'awakening' and on the path to learning and progress. We continue to take 'one day at a time' and are trying to be faithful and thankful in the small things. Prayers appreciated for continued development and many more days without seizures.

I hope to update soon with pictures from the last several months...thanks for checking on us...until we meet again....

"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