Some Information--Including the Correct Date!

As I posted on fb, the date for Caleigh's VNS surgery has been changed to May 5th. This would be because her overwhelmed and slightly fatigued mother wasn't thinking last Monday. We scheduled the surgery for two days before her dance recital. Let's just say that she was less than pleased when we made the discovery. She has worked really hard since September learning these dances. Keep in mind, when you are having seizures every two minutes, learning/memorizing two fairly complicated jazz dances is not easy. Have I mentioned the girl is a master at compensating? Also, we have paid for two costumes and two pairs of jazz shoes. And if you haven't priced them lately, we could pay rent on a decent sized house for a month. Okay, not in today's economy, but the things are stinkin' expensive. So I called the surgeon's office--I found the number RIGHT under the statement "PLEASE DO NOT CANCEL YOUR CHILD'S SURGERY FOR ANY REASON ONCE WE HAVE SCHEDULED IT". Yeah, I know...although I wondered why they gave me the number if they didn't expect a call. She didn't yell at me or anything and we are on the list for 5/5/11. What a Cinco de Mayo celebration!


I know a lot of people have never heard of VNS and some would like to know more. So, I borrowed a picture and I'll use my own "Mom Speak" to try to tell you a little bit. Basically, VNS is a sort of pacemaker for the brain. This is NOT brain surgery, however. The vagus nerve conveniently passes by the carotid artery in the neck on it's path through the body. She will have an incision in her neck where the leads will be wrapped around the nerve, and one in her chest where the generator is placed. Her surgeon is actually "dance costume/prom dress/wedding dress" savvy and said for girls he likes to make the chest incision under the arm. Nice, huh? About a week after surgery the stimulator will be turned on and then for six weeks or so we will be beating a path to SA to visit with our neurologist there for programming. The stimulator will be set to do its thing every 30 seconds to 5 minutes, depending on her response. The vagus nerve acts as sort of a "natural electrode" and stimulates her brain to straighten up and is supposed to reduce the number of seizures. She will also have a magnet that she/us/school nurse etc. can use to "jumpstart" things if needed. It looks like a watch--it is worn on the wrist and is swiped across her generator in the chest as needed for an extra boost. The surgery is 1-2 hours long and requires general anesthesia. She will still be on her seizure meds indefinitely. Boo. I know. But it takes a while to see how she will do with VNS. She will be released from the hospital same day if all goes well, though because of past anesthesia stuff (she painted the inside of my car pink after her tonsillectomy), we will be staying in Houston that night. The surgeon thought it best that we stay in the area anyway since we don't live close by. You can read as much as you want by searching VNS. If you were so inclined, you would see quickly why I am limiting what I read. There is always something. I researched this quite a bit last summer, and we feel confident in the decision as I said before. But you can scare yourself silly. I'd rather pray without ceasing. So that's it! Thanks for reading--I am open to any questions. I've probably heard them before, but I don't mind.

So What Are You Doing on April 14th?

If you're not busy, you could join us in praying for a successful VNS surgery for Caleigh Faith. We tried our best, our neurologists both tried, but it has come down to this. In a few short weeks Caleigh will have what is actually a very simple and straightforward surgery that we hope will make all the difference in the world to her. Despite trying every medication on the market for her type of epilepsy, plus a few that aren't widely used, the results just never have been long lasting. She has what her neurologists call a "honeymoon" with each drug...but all too quickly the honeymoon ends! There are all kinds of analogies that they use...sort of interesting. She will have the surgery at Texas Children's Hospital in Houston, but they are allowing us to use our "home" neurologist in San Antonio to do the weekly programming that will take place for at least 6 weeks. Thank you Lord. If I had to drive to Houston every week for 6+ weeks...

When Dr. W. first came in today he was talking about how her blood levels were good and that we might be able to play with these two meds a little and put off surgery a bit longer...then he looked at her EEG. I can't describe what it does to me when I see his face as he reads the EEG. This is the second time that I've watched his face fall--today he looked at it and just said, "Nevermind. It's time." She had a ridiculous number of seizures during her 30 min. test today. Ridiculous.

This was not an easy decision and was not taken lightly. Basically, there is still a chance that she could outgrow this disorder. Unfortunately, even Dr. W. (who is known in neurology circles as the smartest man on the planet) can't predict the future. Will she outgrow it? And when? In a year, two, three? That's a long time to a 10 year old girl. And if she doesn't, the odds of her going on to develop grand mal seizures (which won't go away) shoots up considerably. In the meantime, she is struggling in ways that very few of us understand. The energy that it takes for her to compensate, which we all agree she does extremely well, is taking a toll on her. School is not fun anymore, it stresses her--and not just a little bit. Every seemingly ordinary milestone becomes complicated. Summer camp, going places with friends, everything is affected. We are very confident that we made the right decision.

I really am so tired my brain has now shut down. I just decided to write while everything was fresh on my mind. I'll follow up in a day or two with some more information about VNS and how it works. BTW, I thought it was interesting that both of Caleigh's grandfathers asked how she is dealing with this decision. (I know, she has sweet grandpas--and grandmas!) She is handling it very well. She asked the surgeon a couple of questions. Bless her sweet heart, she's worried about her singing voice--because you KNOW she just might be the next tween sensation! He explained that her voice WILL be affected, but that it tends to fade over time. She is also worried about the actual surgery, understandably, but I think we have calmed some of those fears. She told us in the car tonight that she's ready--and that she thinks this is a good thing if it will help her feel good again. We agree.

The Angel on My Tree

This is not meant to be a downer post. I apologize ahead of time that it may seem that way, but I need to work through some emotions tonight. I've said many times that I blog for two reasons: one being to record life, the other for my own therapeutic reasons. Tonight it is the latter.

The Christmas season, beautiful as it is, is a time of reflection for me. If you read my blog, most likely you know this story. I need to tell it again though. For me. In September of 1998 we had just moved to Rockdale from the valley and were settling into a new ministry. Conner was 3 years old and while we had discussed having another baby, there were no immediate plans. As is often the case, God had other plans. We were excited and somewhat shocked when we found out that a new Briley was expected that following May. With the exception of some intense migraines early in the pregnancy, all seemed well. I chose an obstetrician, Dr. A., in College Station and we laughed that it was only fair that this baby be born in College Station since Conner was born in Austin. Because of the serious problems that I experienced with my previous pregnancy, my doctor was watching things very closely. In November, at a routine ultrasound, we were excited to see the baby developing as expected. Arms, legs, a beating heart...tiny but perfect--we thought. The doctor was concerned that the baby might have an intestinal problem, that things weren't as they should be. We were stunned and prayerful as we left with an appointment to return mid-December for a follow up ultrasound. One month later...an incredibly beautiful, cold and clear December day. We left Conner with a friend from church who kept him while I taught (Head Start back then) and drove the hour to my OB appointment. I remember so many things from that day--in amazing detail. My doctor, who was also expecting and due one month before me, met us with a smile. She had reviewed the ultrasound over and over, had consulted with other doctors, and the consensus was that everything was fine. She left the room and the technologist started the examination--we were so relieved and even a little hopeful that we would find out the baby's gender...though it was a little early to do so. I can still see the smile fading from her face, the look of concern that replaced the cheerful banter. "Have you been feeling okay? Any problems?" I assured her that this second trimester was going great--fewer headaches, nausea under control. She called the doctor in and they quietly studied the screen--it seemed like an eternity. Finally, with tears in her eyes Dr. A. told us that there was no heartbeat. Disbelief, pain like no other. The rest of the day was a blur, though I have some vivid details that remain to this day. She felt that it would be in my best interest to not be an hour away and have to go through the process of miscarriage, especially as I was at week 16. We needed to stay in College Station until later in the afternoon so that I could have the procedure. Not really knowing what else to do, we went to the A&M Church hoping that one of the ministers (and our friend) was there. He was not, but we were graciously allowed to use his office to call our families and make arrangements. The rest of that day, and the days, weeks, and months following were quite a journey. Grief is a process, to be sure--and every year at Christmas, and again in May, I realize that grief is not finite. With God's help, a loving and supportive husband, wonderful friends and family--I made it through the toughest part. But it never REALLY goes away. The ornament in the picture is on our tree every year. A small crystal angel that reminds us of another little angel, whole and complete--waiting to meet us.

'Twas the Stretch Before Christmas...

Yeah. Already. I was working on tweaking some lesson plans tonight and sort of had a panic attack. These three weeks upcoming have the potential to be many things. Magical? Sure. I really do get excited with and for the kids. I love decorating the classroom and my house-I love the lights, music, everything. Stressful? Afraid so. SO many commitments and things that I really want to accomplish but so little time it seems. Depressing? Mmmhmm. In case you hadn't noticed, we live in a troubled world. This is Russell's first year to be a full-time employee on the unit. He has been duly warned that we are in the middle of prime suicide time. This is also a difficult time for many of the children and families that I work with. Stinks, but it is true.

So what do we do? How do we cope? This is just a short list of things that I thought of while trying to calm my own panic--maybe it will help you too.

1. Slow down. I know, I know...physician heal thyself. But this weekend I did slow down a bit, had a little "me time" and it helped. I promise myself that I will spend some quiet time by the Christmas tree this year. Soft music, twinkling lights...and this time I won't be noticing the gaps without ornaments or how crooked the top of my tree is.

2. Forget about perfection. I mean really, REALLY forget about it. It's unobtainable and highly overrated. I was looking at props for our kindergarten play the other day and thinking that I should re-do all of them because they're a little worn. How ridiculous is that? And anyway, most of my students big brothers and sisters and cousins wore the same costumes and used the same props--they have sentimental value.

3. Do what is most important. Guess what? Not everything is that important when you really get down to it. For years I felt compelled to have an open house during the holidays. In reality, I didn't enjoy the extreme stress involved in getting my home ready to be "open"--and our friends probably saw it as one more obligation during a busy season. My Girls Only ornament exchange is something that is really important to me and my friends--so it stays! Easy as that. Oh, and bonus: These are women who know and love me and they expect my house to look like a busy woman resides in it.

I'll stop there because long lists stress me. Hope the holiday season is joyful for you and yours.

21st Day of Thanks

There isn't a concise title for this day of thankfulness. So I'm just going to throw it out there. I am thankful that I feel better than I have in weeks, actually months...maybe even years. I started noticing something during the week last week--I was ready for bed early every night, and I gave in to it but I also noticed that I felt better in the mornings. Hmmm. This weekend instead of wanting to sleep all the time, I accomplished a couple of pretty major projects. There is a spring in my step--my mind feels clearer. My best guess about what is going on is that at my physical a couple of months ago my blood work showed that I was SERIOUSLY vitamin D deficient. I was given a prescription of 50,000 iu's of vit. D to take once a week for 6 weeks. Tonight is my 5th dose and maybe I'm crazy, but I think it is making a difference. A big difference. Whatever it is that is happening, I just know that I am really, really thankful.

Day 17--I'm Thankful for the Hearts of Children

Yes, I took a two day hiatus. My heart was thankful, but my body was tired and the writing spark just wasn't there. But here's some food for thought.

This week in kindergarten our social studies unit is about wants and needs. We are also talking about Native Americans and Pilgrims, so I introduced the lesson today by reviewing/discussing what the Pilgrims needed when they made the voyage and established their new home. Yesterday my students found pictures in magazines of things that they want, and things that they need. I watched them but didn't comment on what they were cutting out. Today we sat on the floor with a poster board labelled "Wants" and "Needs" and I gave each student their pictures to glue in the appropriate column. I knew one little boy had cut out a picture of a stained glass window with the image of a cross. I was curious, but didn't ask. When his turn came to glue his picture on our project today, this is the conversation that evolved:

"What is it?"

"A church."

"Is it a want or a need?"

Incredulous look, followed by this. "A need."

"Why is it a need?"

"Because we need God. We need Him to protect us. We need church to teach us what's right and wrong. It's a need."

And that was that. These precious 5 year-old hearts amaze me. I'm not going to argue with that reasoning. I'm just not. And that's why, if you happen to walk down the hall and see kindergarten's work hanging on the wall--you will see a stained glass window and a cross amidst the carrots, milk, clothing, and houses that they cut out. Because they know what they need...and that is something for all of us to be thankful for.

Day 14--The Family of God

I am thankful for my church family today. We are a family made up of imperfect individuals. We can be slightly dysfunctional at times, but we enjoy one another's company, we take care of each other, we laugh together, we cry together. They are among the first people I call during a crisis, or to share in good times. I am very blessed to have some of my church family in my workplace. We are not many in number, but we make up for it in love. And for that I am thankful.