We have a Wig

Julia went to the wig story today, and found a wig she likes very much.  It is close to her hair color, and just a little bit longer than her current length, so the average person would not really notice it is not her hair.  It has lifted a huge weight from her - she instantly became more relaxed, and less worried about the surgery.  So this has been a good thing.  Just 9 days to go - Julia counts down each day, so there is no doubt how long we have to go.

More craziness

We are just counting down the days until we go to Birmingham with Julia.  In the mean time, I have to take my car to the shop because it is burning oil.  And now the upstairs air conditioner decided to stop working.  All the girls will have to sleep downstairs - thank goodness we have a separate air condition for the downstairs.  It looks like Julia will go wig shopping on Saturday, so hopefully we will find a wig she likes.  We heard from Kate today.  It sounds like she is having an interesting and challenging time in London.  She is interacting with Sikhs and Muslims, and learning more about their culture.  Today was a difficult day for Libby.  It started off at 3:00 am with a call from the hospital.  Apparently her mom was upset or confused and wanted to be taken home, which cannot happen just yet.  So Libby's sister went there early in the morning and is still gone at 8:00 pm.  Libby took her dad for his first chemo therapy today, and that seemed to have gone reasonably well.  They are both home for the evening.  This is a time of great stretching for us, so many prayers are appreciated.

Wigs

Today I went and found a wig shop in Montgomery so we can try to get Julia a wig before she goes out in public after her surgery.  She has been "wigging out" over this, so we need to take care of it soon.  I suppose it is the mark of being the father of many girls, that I went into the wig shop, discussed various lengths and colors of hair, checked the texture to make sure it was suitable, and didn't feel odd doing it.  I must be thoroughly inoculated about girl things.  Of course, while this girl thing is going on, I have other girls doing girl things, such as driving the car on a flat tire and ruining a tire and having to get a new one.  It was one of those kinds of days today.  Tomorrow, Libby's dad begins chemo-therapy so we are a bit anxious about that.  Many prayers needed.

Pressure is Building

Something we have always wondered about is if external circumstances affect Julia's seizure "schedule".  It would appear that they can.  Ever since we received the SEEG date, Julia has been more anxious about the surgery.  And her seizures have been more frequent.  She even had 4 in one day this last week.  She also gave me a scare today.  She ordinarily does not try to move when she is having a seizure - she just stays where she is, and after a seizure, will go sit down or lay down.  Today, for some reason, she tried to walk down the steps and stumbled a few times.  It scared me to death.  As soon as I heard the sound, I knew what was going on.  Fortunately, it was only a few stumbles, and not a fall down the stairs.  Then she went to the bathroom and vigorously washed her hands.  It was after this that she was done with the influence of the seizure and "blinked back on".  She needs lots of prayers to try to not worry too much about the surgery (although it is, without a doubt, a scary prospect).  And of course, we want prayers for the procedure, that it goes well, and as accurately as possible, pin-points the location of the seizure initiation point.

We have a Date

We finally have a date for the SEEG - it will be July 20th.  We had hoped this would happen in May, mainly because Julia did some mental math and figured her hair would be growing out by the time school started again.  Now, it is more probable that she will miss the first few days or weeks of school, and likely be quite bald still.  This realization resulted in another round of tears, so it looks like I will be going on a wig hunting expedition with her in the near future.  As it turns out, apparently the surgeon has been traveling around the US, getting more familiar with the procedure, etc.  So hopefully he will be ready to go when we get there.
In the category of "when it rains, it pours" this summer has not unfolded the way we anticipated.  I can't remember the exact order of everything but in mid-May Libby went down to her parents to help them with some doctor's appointments.  Her mom suddenly got very sick with what turned out to be pneumonia.  She checked into the hospital, and that night all of her vital signs tanked.  It was discovered that on top of the emphysema they already knew she had, she also had congestive heart failure.  She has been in ICU and then the rehab center ever since.  Libby has just stayed down there and I have been playing Mr. Mom.  Libby's dad has a reoccurrence of bladder cancer and will start chemo treatment this coming week.  Laura had a sudden, fairly severe allergic reaction to something last week, and while we think we have limited it down to two things, we are not certain yet.  She is taking handfuls of steroids, antihistamines, benadryl, etc.  Virginia has been dancing ballet all summer (this isn't a bad thing, just one more thing).  Kate is getting ready to leave Sunday morning for a week long Missions Trip in London.  Our grandson had a condition in which his body attacked his own platelets, so he had to spend the night in the hospital to get that straightened out.  And Mary Beth and Sam and kids are moving to Birmingham on the 18th of July.  Other than that, all is mostly quiet.  It is Libby's hope and prayer that her mother can make enough progress to go back home, in time for her to go up to Birmingham with Julia.  Or to put it more accurately, Libby is going up to Birmingham with Julia, and we are praying that Libby's mom has made good progress by that time.  Julia is getting very nervous about all of this, and has been having more seizures than normal, so please continue to pray for her.

Meeting the Surgeon

We returned to Children's Hospital on Monday, to meet the surgeon.  Also meeting with us was his dedicated surgery nurse.  The surgeon was very impressive, and showed early on that he was thoroughly familiar with our case, and the timeline so far.  He even apologized that things were taking longer than we initially thought they would or should.  The reason for this has to do with the SEEG procedure we will be using in our case.  We will be the first pediatric SEEG case performed by Children's.  The extra time in getting to this point was due to his coordination with a fellow neurosurgeon at UAB.  This surgeon has done a half dozen procedures on adults, as well as being trained in France on the procedure.  Julia's case became of particular interest for three primary reasons: her seizures have been essentially nonresponsive to the variety and combinations of medications we have tried; her likely initiation point of the seizures is deep in her right frontal lobe, and still not well located; and she is a nearly fully grown "pediatric" case, and so a nice first case for the Children's staff.  This raised a question for us.  Were we going to have a rookie doing our surgery?  So I asked him this question directly.  He told us the UAB surgeon would be the "pilot" and he would be "copiloting".  Part way through this discussion, he called a surgery nurse to come join us.  This particular nurse was from Belarus, and spoke Russian, so she came to make sure Julia understood exactly what was being said.  He went into great detail, which was somewhat unnerving to Julia, about the four areas of concern he had: bleeding, infection, neurological damage, and failure to eliminate the seizures.  He went through all the details and probabilities of success of each area. All of this was pretty overwhelming and frightening.  Julia and I talked tonight, and she understands everything - she is still just scared.  I told her of all the people who ask about her almost every day, and all the people already praying for her.  She is a tough young lady.  There are no hysterics or undue drama.  She is trying to stay calm, but it is hard for her to concentrate on school.  She has even come to terms with being bald and can joke about it.  Now we are just waiting to be schedule for the SEEG procedure.

A Second Journey is about to Begin

I am firing up the blog again, to help keep all of you informed on our next journey.  We would appreciate your prayers as we move forward.  We also hope that what we learn along the way may be of use to others who may also take this journey.

As most of you know, Julia has epilepsy, and has been having seizures about 10-12 times per month on a fairly regular pattern.  She will go a week or more without a seizure, and then have a flurry of seizures packed into one week.  We have tried a variety of combinations of medications and also varied the dosages, but to no avail.  The seizures have kept right on occurring on their regular schedule.  At the same time we have been doing this, we have been going through a series of EEGs, MRIs, PET scans, CT scans, more MRIs, which has gotten us to the point we are at now.

We are headed in the direction of brain surgery to try to find and eliminate the source of the seizures. (That is probably not the correct terminology, but you get the idea.)  On Thursday, March 19th, we made our latest trek up to Children's Hospital in Birmingham.  The most delightful aspect to this trip was we had to be there at 6:30 am, which meant leaving here around 4:30 am, which meant Libby had to get up at 3:00 am.  We had a quick CT scan to start the day, and then an hour long MRI.  Julia had to have anesthesia for the MRI, so she was a bit groggy for a while.  Then we had a lengthy and very informative consultation with the neurologist.  She explained the procedures coming up, and answered all the questions we asked of her.  The next step is a procedure called an SEEG (stereoelectroencephalography).  Rather than trying to explain this, take a look at this web page - it will explain it very well.

http://my.clevelandclinic.org/ccf/media/files/Epilepsy_Center/SEEG%20Fact_Sheet_022210.pdf

This procedure could be scheduled at any time, but they might wait until school is done for the year, so it could be the middle of May.  We will keep you all posted.