Blessed and Amazed

If you are reading this blog you most likely know that the past three years have been challenging for our family. Conner's RSD and JRA, followed by Caleigh's diagnosis of absent epilepsy, and Russell's lymphoma have kept me busy. We have had a pediatric hematology/oncology specialist, a pediatric orthopedic surgeon, a pediatric rheumatologist, a pediatric endocrinologist, a pediatric cardiologist, a pediatric neurologist, a pedi. epileptologist, an adult orthopedic surgeon (2 of those), an oncologist, a psychologist (to assess our stress level), a speech pathologist (for memory issues), a physical therapist, a nurse practitioner, and 2 family practice docs. I'm probably forgetting someone. Let it suffice to say that I have not seen the doctor much in the last three years. Why? No time mostly--along with the fear that they would find something. If nobody tells me I'm sick, then I'm not sick...right?? I finally took the plunge yesterday and scheduled an appointment for myself, mainly so I could get a prescription refilled. I also thought it wise to catch up on my own care and deal with some issues that have been getting worse. I took off early from work, made it to the family practice office in the nick of time, and was told that I was rescheduled for tomorrow. I could not stop the tears from welling up. The sweet receptionist and nurse that have seen our family through much of our difficulties came to the rescue. The nurse practitioner that was instrumental in catching R's lymphoma recently moved and we now see a new NP. She was unavailable, but the one of the doctors happened to be there. I waited a few minutes and was ushered to an exam room. After asking me a couple of questions, the nurse called in the doctor. He greeted me politely, and asked: "When was your last labwork?" Tears again. "I haven't done anything except take my medication regularly in three years because..." and the whole story came out. That sweet man dropped to his knees, took both my hands in his, and began to pray for me and my family. I felt a calm come over me that I haven't felt in quite some time. He patiently explained that it is time to take care of me, and then outlined the plan. He asked about each of my family members, then excused himself to leave for a prior commitment (he drives in from another town). We have met him once before when he requested to meet Caleigh since her neurologist sends all his reports to him. It was just the most amazing thing. I have so much room for improvement when it comes to living my faith. I am going back next Thursday for a full physical. It IS time. God blesses us in such amazing ways.

Give Thanks with a Grateful Heart...

R. had scans yesterday and we saw Dr. B today for labs and follow up today. The scans show no new tumors, and the tumors etc. that he still has are not showing any growth. This is considered a stable exam. Stable exams are good exams and God, as always, is good. We discussed that R. is a cognitive therapy dropout...they completely understand. It was TOO MUCH to drive to San Antonio every week, and they really wanted him twice a week. Not happening. We are the crazy schedule family as it is--don't need more "stuff" to deal with. Our favorite research nurse ever, Jan, has moved to another location, but we liked the new person--always a plus. Russell's memory problems/cognitive difficulties were considered grade III, evidently that's bad--but she upgraded him to a II today based on our report and his ability to answer her questions about the past three months. Dr. B was a little concerned about some weight loss, but said that for now he will chalk it up to summer, heat, swimming, lawn care, stress...and watch it. I've said it a thousand times, but we SO love Dr. B. What a blessing he continues to be to us. Love that man. We celebrated our good report with lunch at Souper Salad--an old favorite of ours from our newlywed days in Austin. After lunch, we even allowed ourselves about a 1/2 hour browse of Goodwill. I always find great books for my classroom--today was no exception. Our house is quiet for the moment, but soon our dueling siblings will be home. Ugh.

Trying to Make Time Stand Still....Doesn't Work

This I know. Whether trying to hang on to your own youth, your babies, or even the fleeting days of summer vacation...time moves on. Rapidly. I was sitting in an interview this morning and the candidate made the comment, "I didn't want to be in school until I'm 40 (emphasis on the 40) or something." Yikes. Certainly there are worse things than being 40 (ish) but sometimes I just feel OLD--especially lately. My very bright and observant 9 yr. old has noticed that some of her friends have more youthful Moms. Oh, she's polite about it. Like the day she shouts from the playroom "MOM, MOM--did you know there's a cream to take away wrinkles for people over 40? Just thought you might like to know!!" Thanks sweetie. I'll keep that in mind. Next time you want something from me. Seriously, I have been struggling for almost a year now with where it is that I see myself going--mainly with my career. Too late to worry about being in school 'til I'm 40. Do I want to go back to school? Am I meant to keep teaching? Do I need wrinkle cream?

So Tired

We are home and at least 3/4 of us are very grumpy. The trip went fairly smoothly--thanks so much for the prayers. It was a reaaalllly long day, but I'll try to summarize and hit the highlights. Caleigh's EEG was very difficult this morning. It took over 2 hours due to some problems with the leads staying in the right place and a screaming baby down the hall. Caleigh usually falls right to sleep but today that was not gonna happen. They were able to see that her seizure activity has not decreased at all and that she had one episode that lasted 35 seconds--which is a long time to be unconscious while the world is still going on around you. When we saw Dr. W. this afternoon, he was really frustrated. Obviously the medication that we have her on now is not going to work. Neither have any of the others. He explained that because her epilepsy situation is rare, for the pharmaceutical companies to develop a drug for this disease would not be profitable...for them... and that in the world of prescription drugs it's ALL about the money. His words. He said that for a new drug to be developed that would help her would be a total accident. No one is going to try to do it, because there's no money in it. There is a drug that is in the pipeline so to speak that he and some other neurologists are optimistic about--but it has been held up for at least two more years due to...yep, money issues and company buy outs. So we are left with only two options. We try the one last drug that we haven't tried and it either works or it doesn't...AND if it works but causes side effects we have to take her off of it anyway. OR he offered to call in the surgeon for VNS. While the surgery isn't brain surgery, it is surgery and has its own list of concerns. We talked for quite a while and decided to give this last med a shot...he told us what to watch for and said that we would know within a month if it is going to work and if she can tolerate it. At that point, if it isn't working, we see the surgeon. He was absolutely AMAZED at her perfect TAKS scores. He cannot believe that she is doing so well, given the number of seizures and the medications. He just kept saying, "Seizures don't make you smart, these meds don't make you smart...imagine what she will be like when we get this under control." Something to look forward to...personally, I hope she becomes a scientist and develops a new medication for intractable epilepsy. And that she doesn't even care about the stupid money.

What do Michael Jackson, Masquerade, and a Ladybug Have in Common?

Caleigh Faith Briley, that's what. She is all set to light up the stage Saturday evening and again on Monday evening. She will be dancing, singing, and being her wonderful self. So who's stressing? Uh, Mom. See my posts from one year ago for a reminder of how much I DETEST all the stuff leading up to Saturday night's recital. I'm less stressed about Monday night, but still. On top of everything, Russell will be out of town Monday through Wednesday. Ugh. I had this deeply moving post all set in my head for tonight, but I think I'll save it for tomorrow. Because this day has left me exhausted and longing for my bed.

I know, I know...THIS IS LONG. My Apologies.

I decided it would be easiest to report on Caleigh's appointment here. First of all, thank you so much for all the prayers. Those prayers got us to Houston, around the medical center, and out of Houston without a hitch. That in itself was quite an accomplishment. Everyone we dealt with from the hotel to the hospital amazed us with their helpfulness and kindness. It all matters when you are already stressed and worried. I know, I'm not supposed to worry, but I seem to get caught up on being human sometimes. Here we go...
Caleigh has been diagnosed with medically intractable absence epilepsy. Meaning--she has epilepsy that is not responsive to medication. She had over 30 seizures in ONE HOUR this morning. The doctor calculated that she is probably having at least this many most hours of the day rendering her unconscious for one hour each day of her life. Crazy. He was astonished that she makes all A's and does so well in school and life in general. He said it is a testimony to her hard work and determination...she is one tough chick! There are only three medications widely used for her type of epilepsy and all three have failed for her. So we are going to now try a couple of medications NOT widely used for her type of epilepsy and see if she responds to those...if not, we will schedule surgery. She is not a candidate for brain surgery (where they remove the part of the brain responsible for the seizures) because it is her entire brain that is involved. What they will do is implant a vagus nerve stimulator in her chest, much like a pacemaker, to eliminate the problems. For now we have quite a job of titrating her off one of her current meds and instating one new one. This is easier said than done--but it will be fine. We also pray (you all can help!) that she does not develop grand mal seizures or drop seizures as some with this condition do...AND we pray that she outgrows the condition altogether in the coming years, which is very possible.
I will add also that Russ got his reports back from the testing he had regarding his memory and we have a bit of a struggle ahead for us there as well. The neurologist wants him to get neurocognitive therapy--not a bad thing, but one more thing to deal with. Basically the doctor explained that his recent illness, treatment, and the stress therein have possibly reinjured his brain. He is scheduled for MRI's etc in the coming days. I think I should just buy my own hospital...what do you think?
Sorry again that this is so long. Thanks so much for the prayers.

I Can't Think of a Title

Could someone please tell me what in the world is going on? I am forgetting passwords right and left. I couldn't even access my own blog or facebook, FACEBOOK people!!! Speaking of fb I am ticking off people I don't even know on there--well, at least this one poor grad student from another state who happened to say the wrong thing on Russell's cousin Keitha's status. When I don't feel well and I can't remember any of my passwords, the last thing I need is a conversation with a liberal. I attribute most of my life problems to cedar right now, another significant part of them to being female, and the rest to Obama. And that about covers it. I really don't have anything much to report tonight. So much for the state of the union.