Hi!

Has school started there yet? Ours is next week. How is Carmen? Same? Travis is maintaining. No appointment now until Aug. 23, which will be with a neurologist. Probably the one doctor whom I DON'T expect to be able to help us at all, will. That's how it goes sometimes, huh? Did you go through that two weeks of trying to maintain some kind of schedule of waking, chores, friends, etc.? Was it possible at all? I'm trying to adjust Trav's bedtime by awakening him a bit earlier every few days to see if he'll then be able to go to bed earlier (more like the rest of us!). It's very difficult, because I'll wake him and then he'll drift back to sleep. He gets cross if I keep trying to wake him over and over again on any one morning, unless there's a specific reason, like an appointment we have to get to. Bye for now! ~ :wave: Tracy

Hi, school starts up here the week of aug 30. Carmen is going to go to a differant school this year. The 'structure' was a bust. Carmen cant handle just 9 hrs of sleep, as far as the other things, there were days when she was ok and days when it seams like too much for her and she would hide in her room and sleep. She has a new group of friends now, from the new school dist. so she has been pushing herself to interact with them. At this point I'm just waiting untill school starts to see what happens.
Good luck with the nero, I hope he finds out what is going on for you.
I will keep in touch.
Janice

Thanks for writing. Carmen's reaction to the attempt to use structure as a "cure" sounds a lot like Travis'. Some days are better, some worse, but he never gets much more than six hours of activity out of any one day. He is MUCH better in the late afternoon or evening. That's been hard on me, in that he finally wants to get out of the house to do something when I'm in the frame of mind to relax and spend some time with his Dad. I have to get a second wind and take him out to a store for a while. Sometimes his Dad goes out with him, and gives me a break. Then Travis so bored because of his lack of social contact (didn't have time to make any new friends since we only moved here a couple of mos. before his symptoms started) and from lack of things he has the energy to do, that he keeps wanting to buy or rent new things to entertain himself with (CD's, DVD's, games). Sometimes we just walk the mall for 30 min. with nothing in mind. But I find myself wanting to go home, so am not very good company. I've already done the stores during the day, so don't want to drive back to them at 9:00 p.m.! So your school doesn't start until Aug. 30. Some kids have already gone back here, but our district doesn't start until Aug. 24. Why the new school for your daughter? Did you move, too? Or did you choose to send her to private school this year or before? Has she been practicing for cheer leading at all yet? I would think that would be difficult to impossible, if she's got the exercise intollerance Travis has. We put one of those 3' above ground pools in the back yard, and Travis can play with his little brother in it for a while. It's great, because the water doesn't require as much strength and stamina from them. Maybe a water exercise program would work for Carmen, if it comes down to a diagnosis of Chronic Fatigue. They say graded exercise is best. Well, thanks for writing! Take care, and hang in there. ~ Tracy

Where we live are on the border of a another district, the bus ride is shorter to start with and most of the kids that live in "this neck of the woods" go to the other school. As far as cheerleading goes Im not sure she will get into it at the new school. I really dont want her to push too much when she starts off this year, we need to see how she does first.
Lately Carmen has been telling me that I wont let her be a kid, so I have backed off for now. Just waiting till school starts.
Its a real bummer that she sleeps most of the day away, it the same as you, by afternoon/eve im ready to take it easy.
I found out the other day that I have fibromyagia, now Im wondering if this is where Carmen is going to lead, alot of whats going on with her are sypmtoms of fibro also so....I just dont know
:bouncing:
take care janice

Janice,

Oh dear, all you need is to feel badly yourself! I'm sorry that you now have fibromyalgia! Are your symptoms anything like your daughters, though? Trav doesn't have any pain. Sometimes they want to suggest he has fibromyalgia, but it doesn't seem consistent with the fact that he has no pain in his joints, etc. How about you? Any pain?

Have a restful weekend. Got a call from the neuro's office today to remind us of our appointment on Monday, like we could forget! ha, ha! It's all we can think of, each appointment and whether it will be the one to end all appointments! The person who called was awfully nice; I hope that's some indication of the doctor's temperament, but probably not likely! ;) ~ Tracy

I found out that fibro tends to run in familys. Carmen does get joint pain like I did when I was her age, I didnt get real bad till after my son was born.
Carmen seems to be doing ok at this point, Im just letting her sleep as much as she wants. School starts soon enough, we will see what happens then.
Take care and let me know who your appt goes.
Have a nice weekend.
Janice