So...well over a year since my last post. I've been sucked in to facebook-land. It's so easy to get sucked in. Very easy to just post quickly and keep up with folks. But no depth really. Certainly not a journal of any sort. I've found that I've been missing more in depth posts. Instead of starting a new blog (which I've considered for all of a few hours), I thought I'd come back to LJ and see if it still holds its appeal for me.
So we're on the eve of 2012. Lots of people making resolutions and such. I don't really do that. Just another way to be disappointed or distressed at the end of the year. However, I did come up with some things I hope to see or do more of in 2012...but hey, it's all optional and relative and whatnot.
More weight loss.
More healthy eating.
More creativity (more of my "downtime" not spent on the computer but spent in some creative manner--return to quilting or needlework, costuming, etc.)
Not sure if I mentioned that I started Weight Watchers back in the beginning of the summer. I'm doing the online version rather than going to meetings.
Anyway, today I hit 10 lbs lost! It took longer than it probably should, but I'm still pleased. And not giving up.
So we heard from Darien's GI doc today. He said that Darien's small intestine and upper portion of his colon looked normal. However, the esophagus showed evidence of mild reflux and there was some inflammation in his stomach as well (gastritis). And the tissue samples they took showed that he is deficient in the enzyme lactase, which means he is lactose intolerant.
We've suspected the lactose intolerance for a few years. We stopped giving him milk quite a while ago and cut out cheese since his gastro issues began. Now we know for sure. Which is nice. Not sure how severe it is though. Seems like it is most likely worse than Andy's since he has no issues with cheese. A nutritionist will be contacting us to talk about this.
As for the possible reflux, the doc is going to put Darien on an acid med. Prevacid is what we're going to try. He said that he'd like to start him on on something stronger rather than milder. That way we'll know if it helps and then could try weaning him down to a weaker one. If it doesn't help, then it doesn't help and trying a stronger one probably wouldn't make a difference. The symptoms Darien has been having are not really typical of reflux, so we're not really counting on this helping. But who knows, maybe this will work. *shrug* Not holding my breath.
Wondering how the 2 work together...lactose intolerance and reflux. Heading for a new diet I guess.
The doc was also going to check with the metabolic specialist to see if there would be reason for us to get a blood draw while Darien is in the midst of a gastric episode. If there might be something that wouldn't show up when he is symptom free.
Also heard from the geneticist today: "...we are still interested in having Darien participate in a study with us. We are in the process of determining which study is the best fit for him, since there are several studies going on now involving genetic sequencing and seizures. As soon as we hear back, we will be in touch with you."
This is exciting. We really want Darien to participate in one of these studies. We hope we'll get a full genetic sequencing out of it. I don't really think there is much that can be done for Darien at this point, but if we can help someone else down the road...Totally worth it.
Ok, enough for now.
The upper GI yesterday revealed nothing. Everything looked normal to the scope. They did biopsy some tissue in a few places and will see if everything looks normal under the microscope as well. I suspect that it will as that seems to be the way of things with Darien. Not sure what our next step will be.
Also, not pleased with the new transport company that is driving Darien to and from school. I realize that it has only been a week and they've added a new child or 2 to the route and such but his ride times seem to be longer than they should. And they are picking the children up 20+ minutes after pickup starts?? Darien has a maximum ride time of 1 hour listed in his IEP. I'll give them a a few more days to straighten things out, then I will complain if necessary. The school is in total agreement and will actually probably make the first move.
So it is 5pm Friday afternoon and Darien is not home yet. This makes me grumpy.
September 1, 2010. Wow.
Let's see. Darien is now 9 years old and in the 4th grade. Jarod is 12 and in the 7th grade. I'm almost done with my MTEC schooling. Andy is still a paralegal.
Jarod and I visited my folks in AZ in May. We had a fabulous time. Traveled a bit up to Sedona and visited many neat places. Ruins and volcanoes and such. Really had a blast.
Darien had a fairly decent summer break. He went to a couple little morning camps that he seemed to enjoy. We had one bout of tummy issues. Sarah helped out twice a week during July. That was great! We also started riding at Horse & Buddy.
We spent the 1st 2 weeks of August at Topsail Island. My parents rented a beautiful ocean-front house to celebrate their 50th anniversary. It was our first trip with Darien and he did great! Andy was able to stay for the 1st week. I stayed with the boys the full 2 weeks. My sister, her boyfriend, and his son were there. My brother, his wife, and her son were there. Various other friends came and went too. It was really fun!!
Medical: We really got nothing from the geneticist on Darien. A minor abnormality (like most of his tests) showed up and we'll be getting Jarod checked for the same thing this fall. But nothing that explains why Darien is the way he is. They did say that they're trying to get a study going and that Darien would be a good candidate for it. We agreed immediately to have him in the study. He'll likely get a full DNA sequencing out of it. Which would be amazing!!
His GI issues are still undiagnosed. He goes in for an upper GI tomorrow. Fun.
What else...what else...I'm still belly dancing. The student troupe I got into has several performances coming up. Exciting! I'm on session 17/18 in my MTEC program. I will be done by the end of October at the latest. I'm doing Weight Watchers online. Slow going, but I am losing weight. Woot! Bettina and I are going to TribO again this year. Whee!
Ready for fall weather. Autumn is my favorite season. Cooler weather, pretty leaves, my birthday, the holidays, etc.
Ok, stopping now.
I am still here. LJ is my homepage so I'm fully aware of how NOT often I post. Facebook has snagged me. Mostly because it is quick. For LJ, I feel I need to post something significant. And the longer between posts, the more there is to say and the tougher it is to get it all down.
But I am here.
So let's see...
Jarod is in middle school at a year-round school and enjoying it for the most part. He hates homework and seems to have trouble remembering assignments and such. So Andy and I are going to crack down a bit and try to help him out. It is only going to get worse from here, so he needs to figure out how to be organized now. He's also taking Hapkido now and really enjoying that. He'll be 12 next month. Yikes.
Darien had a rough winter, as usual. This seems to happen every year. So we've been doing a big medicine switch. We got him on a combo of seizure meds that seems to be working. We're also getting him off the anti-psychotic/behavior med that he's been on for years. We're having to go very slowly. However it seems to be doing wonders for him in some respects. He is doing much better at school as far as focusing and working and attending and using the potty and meal time. So yay! But he is also have some increased sensory issues. I think we see it more at home because he isn't getting the other stimuli that he gets at school. This is something we're really going to need to pay attention to once summer arrives. We've recently had a couple bouts of a stomach thing with him, but we don't *think* it's a return of last year's issues. At least we sure hope it isn't. Also we saw a geneticist at Duke in January. All of the metabolic work and other "normal" lab work came back normal. *eyeroll* One test (microarray) they could not get to work. They tried multiple times and just could not get the info they needed from the sample they had. So we're going back in this week for another blood draw to try again. The doctor seemed very interested in Darien and gave a very thorough report to our neuro. So we're hoping they continue to try to find something. Anything. He'll be 9 in August.
Andy continues at the law firm. Only on a 4-day week still. There just isn't enough business for them to have anyone on 5 days. This pretty much sucks. Andy had surgery in February to have his tonsils and uvula removed. This was done to help his sleep apnea. It seems to have worked! Yay! Andy's dad came down to help out during that time and it was very much appreciated! Thanks again Buck.
I continue with my medical transcription studies. I'm finishing up session 11/18. I have a great GPA so far and really enjoy it. I'm also still belly dancing. In fact, I just auditioned for a new student troupe and got in! So very excited about this. Seriously, it is all I can talk about!
What else...Jarod and I will be traveling to visit my folks in AZ in May. My family is having a huge wingding at the beach this summer to celebrate my parents' 50th wedding anniversary. They're renting a huge house and we're all going. This will be our first trip with Darien. In fact, our first trip as a family since Darien was born. It's usually Andy/Jarod or Me/Jarod traveling. So looking forward to this. I hope Darien really surprises us.
Guess that is it for now.
Happy Birthday Linda, wherever you are. I miss you and hope that somehow you get this message I'm sending out to the ether.
So today it is 2 weeks since Andy's surgery. He's doing very well and is ready to kick the pain meds! Hooray! He drove himself to work for the first time yesterday, that was nice for me. He's sleeping much better and can tell a difference in his normal breathing as well. Woot!
Tomorrow will be 4 weeks since Darien's appointment with the geneticist at Duke. They've gotten back the results from all the tests except one. So far all have come back normal. *sigh* Anything that would be an "easy" fix is coming back normal. Metabolic tests and such. We're waiting on the micro-array test. That is the one that tests for insertions and deletions. There are some other things they may test for if that comes back normal. They'll call us before that though.
So that is all for now.