Official town crier, "I don't heart gluten! But I LOVE tuna!"
Where do I begin?
Well, you know (and if you don’t, read up) that the gastroenterologist advised Jessie to try out the whole gluten thing a couple of months ago. The girl has seriously had a party for herself for the past eight weeks or so, consuming every gluten-laden food in sight, with absolutely no side effects. As directed by Mr. Doctor, we went to have the labs done earlier this week to see what’s going on.
My opinion? I told Jes that it was a formality. She clearly doesn’t have celiac. She said she has no side effects but had a nagging feeling. (Okay at this point you know the ending, but I’ll go on) Doctor’s office called us this morning to say that her levels were up and it clearly indicated that she does have celiac. I nearly fell over.
I marched upstairs to deliver the good and bad news to Jessie. Good news? Starbucks now has gluten-free cake proudly displayed for all celiacs to enjoy. Bad news? She’ll be eating it.
The nurse also said that, while Jessie’s levels were clearly indicative of celiac disease, she wasn’t the worst case scenario. The T3 test showed that her level was 9 while normal is 0-3. Nurse advised that she had someone in the office yesterday whose level was 175. So, that helped to put things into perspective. Apparently there are LEVELS to this disease.
We’ll be going in to see the doctor on July 1st and will discuss whether it’s safe to cheat from time to time when you have no symptoms or if she has to refrain from the gluten 100% from here on out.
So there you have it. I’ve all but abandoned my “Gluten-Free Foods That Don’t Suck” section. Guess I’ll be chugging along again!
I hope you are all having a wonderful summer. We certainly are! The school pressures are gone, THANK GOD! I’m going to brag a bit, but hey, I am a mother. Jessie pulled straight A’s. It’s a good thing. Now I have to deal with the school this summer and beg for the right classes next year. In the words of Ms. O’Hara, “I’ll think about that tomorrow.”
Who me? My daughter? My son? Hubby? (Not hubby) I guess it is to be somewhat allowed during the summer so I’ll take responsibility. Here’s a brief update.
After the trip last week, Jes was quite exhausted for about 2-3 days. (Heck, we all were) When she couldn’t take my yapping and complaining about her unbelievably disgusting bedroom, she perked up and did a two day major clean resulting in two full garbage bags full of junk. How do teenagers do that? Anyway, she’s better now and has even spent time at the neighborhood pool “networking” for baby-sitting jobs.
We went to the neurologist last week. I SO immensely enjoyed telling the doctor that, against his suggestion to take Jessie to a hospital to see a psychiatrist (because he couldn’t find the cause of the migraines) and through stubbornness and research we found that the migraines actually came from Neurally Mediated Hypotension – not depression. HA! I love it when things like that happen. The physician’s assistant was thrilled that we found the culprit. The doctor didn’t have much to say. Maybe because he was WRONG. Uh-oh. Is my attitude showing? Need to check that. Seriously, I’m not debating that depression can result from having a chonic illness. Everyone knows that it does. However, if I’ve learned one thing in the past several years, it’s to trust your instinct and be an advocate! That gut feeling is always worth investigating.
So, summer has begun. Things are still a little busy, but a good busy. We’re taking road trips to visit friends – always fun.
Have a great week.
Just one more day, one more exam and summer vacation will officially begin at 12:15 tomorrow. WooHoo! Even more good news, Jes was able to finish everything – thanks to a few sleepless nights – and is doing fine.
We ARE heading out for Virginia and West Virginia tomorrow. Jeff and I will get to enjoy the Greenbrier Resort this weekend while Wes will visit friends in North Carolina and Jes will be in her beloved Virginia with friends. Because of a Friday exam, Jes and I will be driving separately which means we get to hang around our old “hometown” until Tuesday instead of rushing back with Jeff on Sunday.
After our weekend, we’ll head back home to tackle all of the doctors appointments that I rescheduled for the week after school. We go to the neurologist on Wednesday, then the cardiologist and finally the gastroenterologist. Jessie will be getting the blood tests testing for celiac next week so we’ll get the results from that when we go to the GI doctor. Jessie still thinks that he will say she has celiac disease even though she hasn’t had any reaction at all. I think she’s just bracing for bad news, but I honestly don’t see how that can happen. We’ll see.
Hope everyone’s “end-of-school” weeks are over and you’re enjoying your summer vacation.
It’s FRIDAY! TGIF The fellas are happily biking in West Virginia. Jessie and I are ready for a relaxing girl’s night in. We’re having take-out yummy food and watching a movie called Bride Wars. At least I think that’s the name. Last but certainly not least, we have brownies, vanilla ice cream and chocolate sauce, oh yeah.
Jessie finished everything in Spanish except for the final exam which she’ll take on Tuesday. She’s finished with Algebra 2. Believe it or not, the breathing is a little easier now. In addition to the Spanish exam, here’s the “to do” list for next week (Tuesday to Thursday):
- The Kite Quiz
- The Kite Runner Test
- Voc 5 Sentences & Quiz
- Final exam
- Cold War Unit Test
- Final Exam
- Project (due Tuesday)
- Final exam
All that and we’re trying to leave early Thursday morning for a family/business trip. Sheesh. Jes is worn out from this past week and desparately needs to catch up on some sleep. We will enjoy this evening, then the studying begins anew tomorrow.
This shouldn’t come as much of a surprise, but I must confess that Jessie’s words yesterday were actually mine. Shocker, huh?
I did show the post to her for approval and do you want to know what kind of response I received? As she proceeded to read, I heard a few chuckles, then an outright laugh at the “idiots” part. Apparently, it’s okay to call both parents and brother idiots. Yes, she does text under the table. I got only one objection, “I do NOT text that much!”
In response, I’ll admit one more thing. As she stated this, she had a little knowing grin on her face. Oh yeah, mom nailed it.
I have been a slacker now for almost a month! Posts have been few and far between, which is a no-no in blogland. This is the busy season for any chronically ill teenager trying to play catch-up and finish the school year. For the parent of a chronically ill child, the road is hot between the school and doctor’s appointments. Jessie is plugging away with Hamlet, Algebra 2, Biology, Drama, Spanish 2 and US History with her usual insistence that everything will be fine. (Shouldn’t this scenario be the other way around?)
We had an appointment yesterday for results from the sleep study. Jessie had an end-of-grade test, so I went alone. Long story short, she woke up 18 times during the night of her study and never was able to fall into a deep sleep (REM). We needed a doctor to tell us this? Jessie is also a mild snorer. (Good thing she doesn’t bother reading this blog. She’d kill me for writing that.) She didn’t have any other issues like restless legs or apnea. The doctor wrote her a prescription for Flonase to clear her up a bit at night to see if that helps. If not, we will try a little higher dose of Melatonin. If THAT doesn’t help, they will just have to give her something else to help with the sleep. I don’t know why, that all of a sudden in October, the Pamelor just quit doing it’s job.
Other than that, things are quiet around here. No more doctor’s appointments for the week. I have cleared the schedule through the end of the month allowing for “the crunch.” We were supposed to get the labs done for gluten testing, but we’re holding that off as well. Jes is still happily consuming all things gluten without any stomach problems.
I’ve lost track of the days and am too lazy to figure out when Jessie began eating gluten. At any rate, she has yet to see a reaction, which is wonderful. I think we have the lab work done next week. If it’s negative for Celiac, then they are probably going to do another endoscopy to make sure everything is okay. You can get false negatives with the blood work and the final result will be when they have a peek at her intestine to see if there is any damage.
I am HOPING that the sleep pattern gets a little better and holds out until the end of May because the school crunch as begun. Jessie felt pretty bad yesterday, but went to school in the afternoon to take two tests. It will be like that every day from here on out. Great way to work on that stress level, huh?
Today I (we) have Jessie’s 504 meeting at school which should be interesting since she’s had such a bad semester. I still haven’t dealt with the recommendation of regular-level classes for the fall. I was always under the impression that the teachers make their recommendations, but the parents can overrule. It’s been told to me that they need to see Jessie in school full-time in the fall to allow her into the honors classes. (mostly “A’s” a a couple of “B’s”. nothing ever lower, even on homebound) According to my research, we’re getting dangerously close to discrimination and I don’t want to have to result to threats. I would be okay going along with their suggestions, except for the fact that classes are many times full at the beginning of a semester, meaning she wouldn’t be able to get in. Today’s 504 meeting won’t cover that topic. It will cover any accommodations that will be needed for school.
My car goes to the shop this morning and I’ll drive a rental for a couple of weeks. It’s a relief because I’m beginning to hear strange noises when I drive.
I may be taking a “roadtrip” with Jeff on Wednesday and Thursday, but I’m still on the fence. He has a meeting in Charlotte Wednesday afternoon, then will head to Roanoke, VA for the night with meetings on Thursday. Then he’ll drive back to Georgia (7 hours) on Thursday afternoon, putting us back at around 9:00. The kids are urging me to go. I have to admit, it would be nice to see my buddies in Roanoke for a few hours on Thursday. Plus the location of his meeting in Charlotte is across the street from a great mall. I think I could “suffer” through a few forced hours in Southpark! Finally, he’ll be staying at Hotel Roanoke, which is a neat hotel in downtown Roanoke. Hmm. My only concern is the kids. Jessie has to stay on track, which she assures me she’ll do. I can picture them now eating candy bars, popcorn and soda for dinner on Wednesday night. Sheesh. It’s tempting, all the same.
Have a good day.