Johannah update

Johannah has done so well since our move to Charlotte. I was not impressed with the neurologist that we first saw here (although I have not been impressed with any neurologist yet), but since she was doing so well, I figured I only needed him to fill prescriptions. We certainly weren't going to change anything in her treatment with her doing so well.

But, today we went to see the neurologist again and ended up seeing Dr. Nelson (which is who we were originally supposed to see). I went with the same plan in mind, "No change...just order her meds."

But, this guy was different. He seemed to really know what he was talking about and what he was doing. He listened to how Johannah was doing. Although he also agreed that she was doing very well, he wanted her to be doing better. So, he has increased her Lamictal just a little bit.

He also told me that he's been following the Frisium issue (the medication that Johannah takes, but it is not approved yet in the U.S., so we pay for it out of pocket at about $350.00 a month). He said this medication should be approved very soon, allowing insurance to cover it. PRAISE THE LORD!!!

Once again, God is good and has filled a need that we had.....a doctor that cares about Johannah.

Here's the best part.....he thinks that she is pretty much back to the original symptoms that she had when first diagnosed, which was Benign Rolandic Epilepsy. This is an illness that is almost always outgrown. But, with all the grand mal seizures she had over the last 2 years, we (and the doctors) did not know what was going on and whether she would really outgrow this. With the opinion that Benign Rolandic Epilepsy is really all she has, there is hope that someday this will all come to an end for Johannah. AGAIN, PRAISE THE LORD!!!

A blog that inspired

http://www.joelroyaltyfamily.blogspot.com

I knew Deena from our college days, but only recently came across their blog when I had heard about the extremely difficulty delivery of their 6th child and how wonderfully God spared both Deena and the baby. That brought me to their blog, but then I kept reading....and reading....and reading. I was so thoroughly blessed by the stories of this family - the lightheardedness, the transparency, and the truly Godly spirit that they show.

Then, it made me think about my blog, this blog, called, "God is so good." I wondered if I have really shown God's goodness on the blog. So, I determined to blog better - first by looking around and seeing how good God is everyday in our lives and then by sharing that goodness with anyone willing to read.

So, today I thought, "What can I see today of God's goodness," of course thinking about what I can share on the blog. I realized that I haven't updated much this summer or even this year because not much is "going on." James did very well in school this year, even likes reading more. Johannah is doing SO much better this year. No treatment, only normal trips to the doctor, etc, etc.

Then, something happened today that made it all come together. I took James to the dentist. Up until now, James has always had to be premedicated with an antibiotic before going to the dentist. But, today the dentist said it wasn't needed. I thought, "Oh no, you don't know what you're talking about. James has ALWAYS needed premedication. I will call the oncologist and get this straightened out." Which I did! But, the nurse called back from the oncologist's office and said, "Nope, he doesn't need the premedication. No central line, no treatment....no antbiotic." I think only a Mom that has a child with a chronic illness, that has needed chronic treatment, can understand what I'm feeling. But, when you have done something for so long - whether it be an antibiotic regularly or chemotherapy or whatever - and that stops, there is a fear of leaving the "comfort zone" of therapy.

Here is my "God is so good" moment....that life is SO normal this last year that there isn't much to write about and there isn't even a need for an antibiotic.

When we took James for surgery last summer, we knew it wouldn't be a cure. What we hoped for was at least a few years off treatment to give him a break. But, soon after moving here, an MRI showed that the tumor was coming back. I was discouraged, wondering, "Had we done the right thing?" But, here we are!!!! One year down with no treatment. God has so graciously held that tumor at bay, allowing James a year of "normal." For that, I can say GOD IS SO GOOD!! Although we know that these circumstances can change with the very next MRI, we can rest today in the knowledge that this last year was given to us by God.