Updates on Laurel: June 2003

[Posted by Bob] Thanks for the feel better vibes and happy birthday wishes! They must have all worked because we had a fantastic time at King's Dominion. Laurel was great for the sitters and I had a great birthday. Although I'm sure feeling my age this morning. My feet and thighs hurt from all the walking and standing in line (mostly the standing, I think) and my back is a little sore as well. So, I'm pretty out of shape, but I still had a great time. The weather was perfect but a bit windy. The new Drop Zone ride was closed due to high winds for most of the day, but it opened in the last hour and we went on it so we got to go on everything we wanted to and a few things 2x.

Again, thanks so much for the wishes.

WOO-HOO!!! Laurel's endocrinologist called and...Laurel's ACTH levels are NORMAL! The bottom of the normal range is 9 (don't know what units) and she has tested at 8 the last couple of times. This time, it was 13! But he wants us to move V-E-R-Y S-L-O-W-L-Y on taking her off hydrocortisone, we are just dropping one of her three doses until we see him again in 6 months. I'm a little disappointed that we aren't taking her off faster (in fact, he had just said "We'll continue to let her outgrow it" until I said, "So when DO we get to stop giving the hydrocortisone to her?") but SOOO happy that it looks like she WILL eventually get to go off steroids.

Oh, and her growth hormone levels were normal too. Gee, what a surprise. ;-)

Laurel has a cold. Nothing major, not even a fever, but it just doesn't seem fair since she just had a stomach bug a little over a week ago and what with all the other misery she's had over teething, alternating constipation & diarrhea, and waking up coughing and stuffy most mornings (heck, most middle-of-the-nights) for the last couple of months. (The doctor that we saw when she had the stomach bug theorized that she was just having one minor cold after another, but I just doubt it. THIS coughing, sneezing, yellow-snots-everywhere [sorry] all-day-long thing is a cold, not something where she's stuffy and coughing for a while in the morning and fine for the rest of the day!)

Anyway, we could use some get-well vibes here...

Ugh, shoot me now. I got Laurel's cold and I can't sleep. Now that I've got it, I think the kid's a trouper that she hasn't been whinier than she has!

Maybe I'll go through some more archives...

I am so tired and I've just had it.

Tonight I made the mistake of admitting that I was depressed to Bob. I should know better than to ever, ever do that. Most of the time I do. I know that the *second* I admit that I'm depressed he will go off in a far greater depressed/angry snit. So generally I just carry on, keeping my feelings to myself. But tonight, in a moment of tiredness as I was falling asleep, I admitted that I was depressed and not even really feeling like I want to go on vacation this summer (we have no idea what we even might want to do, we decided we didn't want to spend much money because we wanted to spend some redoing our basement but we've done everything nearby and cheap, and it's so much work to go anywhere with Laurel that it's hard to summon the energy anyway). Of course, right away he had to get even more depressed and say that there was nothing to look forward to, ever, everything was always going to be the same. And I said, well, she hasn't made much progress lately so it's easy to be discouraged. And he said, she never will. I said, we don't push her hard enough. And he said, I'm too tired to. And I said, then I'll have to. At which point he leaps out of bed, says "You're always judging me" and decides to sleep in the basement.

I can't take it any more. I just can't take it. I can't keep trying to be upbeat for me and for him too. I can't keep, every time she has a meltdown (which includes pretty much every time we try to go anywhere), trying to put *both* of them back together. I need a rest, dammit. And I WISH he would do something about his depression and anger besides always taking them out on me. Honestly, I love him, I still think he's a terrific guy. I've also felt for years (since before Laurel was born) that he suffered from mild depression and I think Laurel's problems and recent stuff at his work just kind of pushed him over. But that being said, I feel like I've been carrying more than I can bear lately. Which I guess means, if he won't seek help then I should. I wish I knew how to find a *good* counselor because most of the ones I've been to were pretty lame and I mostly felt that other than someone to talk to I didn't get much out of them. I just don't have time to waste on another bad counselor. And I'm not even sure that counseling would give me the strength I need to get through this.

I'm sorry, I have tried so hard not to post about what's going on with us. But I am just ready to scream. I'm DEFINITELY ready to cry since I'm doing it. But somehow I have to get to sleep, I've got a deadline at work and lots to do the next couple of days. I knew it, I knew I should never have said anything...dammit, I knew it...

The three of us saw James Taylor last night. It was a real Dr. Jekyll and Mr. Hyde kind of evening! We saw Mr. Hyde first - it started to rain (we had lawn seats) right about when the show started! And it got really windy and we were getting cramps from trying to balance the umbrellas and Laurel and her feeding stuff (she had to be fed right then) and we were SOOO miserable. I'm not sure if we'd have stuck it out for the whole show, but at the intermission it stopped raining and the wind died down, and he did all of his classics (he did mostly stuff from his new album, which I'm not all that crazy about, during the first half) and it was just like a whole different evening, except for the part where my butt was still soaked, LOL!

Laurel did incredibly well! She was fussing at first when the weather turned bad but once I found a good angle for my umbrella to keep the wind and rain off her she was a real trouper. It also took her a minute to adjust to the noise level, but one nice thing about Laurel is she's always been good about things like that - we can even take her to fireworks (which I know not everyone can do with their 2-year-old) and after the first couple of booms she's fine. BTW, this is actually Laurel's second James Taylor concert! We also took her the last time he was here, two years ago. She did great then too. She loves music, we really should try taking her to more of the outdoor concerts that are held around here. Foreigner is actually playing here tonight for I think $5/person, maybe that would be a bit much though. :-)

Well, now we're off to go look at minivans for a couple of hours! We took today off (I had some holiday time I needed to use or lose anyway) since we knew we'd be wiped after James Taylor (we got home around 2 AM). But Bob took Laurel to the babysitter's anyway. He *just* got up from a nap and so we're going to go get some lunch and do some van shopping - we don't think our '91 Ford Escort with the 221,000 miles on it is going to last too much longer for some strange reason. :-D See you guys later!

Thank you so much for your posts after I got fed up last week! I think I probably will see a counselor although I haven't gotten organized on it yet - I feel like I've had even less time than usual this week. I want to try and find one that will help me figure out how to manage things now without necessarily digging into how my feelings are rooted in the way my parents treated me or somesuch. If counseling doesn't work, I may try an antidepressant although I've been reluctant to because of sleep issues (although someone told me about one that might be OK for that). I also think I'm going to take another suggestion and find a class or workshop, although I don't have time to do one every week. Our local bead store offers a lunch bring-in-whatever-you're-working-on session once a month that I think could be a great choice. And I think I may visit a friend in NC for some girl time :-) if I can figure out how that works.

Oh - and about freeing up time. The one thing I think we might be able to do to free up some time is to cut Laurel's feedings from 5x a day to 4x a day (we would feed her something with a higher concentration of calories). We would cut out the last feeding (usually happens somewhere between 11 and 12) and hopefully put her to bed earlier! I have no illusions that our little night-owl is going to go to bed at 7 (nor would I want her to!) but even 9 or 10 would make such a huge difference. She's usually too sleepy after about 10 for us to do anything much with her anyway, but she tends to stay up till that last feeding is over (or wake up for it if she's drifted off). And then she often takes a big long nap in the morning, which has been especially great on the weekends BUT it just won't do when she goes to morning preschool this fall. So we need to get this kid to bed earlier for all our sakes! In order to make sure we go about this the right way (we're also seriously considering trying to switch her partly to purees - still through her tube though) we want to talk to a good nutritionist with experience with tube-fed kids. Laurel's speech therapist was supposed to organize a day when one from Richmond was going to come up and meet with several families, but it's been months now and we've only got two months till Laurel starts school. So once she gets back from vacation (Monday) I'm planning to demand the name of the nutritionist and set something up myself. Better to have to drive to Richmond (1 1/2 hours) than wait any longer. I'm sure it will take a while both to switch her feedings and to convince her to go to bed earlier - I'm not even sure which one I'm more nervous about! :-( But I think it could make such a big difference that we have to try.