For better or worse...

I know I've said it before: I have an awful time blogging about our "stuff" when it's not just fun stories about the kids. I apparently like to live in denial!

The last time I posted, we were just beginning to explore Sam's eating issues. We finally have his endoscopy scheduled for this Wednesday, an appointment that took forever to secure, and Rob and I came home from (an alone!) trip to Disney tonight to find out Sam is probably too sick to be sedated. I have a feeling I'll spend tomorrow trying to beg for an appointment sometime soon. I was hoping to have it done at the Children's Hospital of Philadelphia center near home so it didn't seem too out of the norm for him. Now I imagine he'll be going to the hospital so it can be rescheduled quickly.

In other news, after years and years of fevers and crazy symptoms that left me feeling like I was losing my mind when no diagnosis could be found, I finally know that I have a weird, rare, hard-to-pronounce autoimmune disease. I've had a suspicion for a while after a crazy blood test, but managed to use my word nerd tendencies to their fullest capabilities and not admit to myself that the evidence was there. Basically, I read the result as I *could* *might* *maybe* have a *tendency* toward this icky illness. Then I did what I do best -- focused on someone else's problems (this time they were Sam's) and waited to follow-up on my own stuff for a couple of months.

My awesome doctor gently broke the news that what I was reading was real and that I needed serious treatment. His advice was to send me to Johns Hopkins where doctors at only one of four locations in the US are experienced in treating autoimmune vasculitis. He also hugged me as he left the room. That is what did me in. Words didn't convey what I was dealing with (and shock was probably playing a factor) but getting a serious hug from my stoic doctor woke me right up. After getting ridiculously nervous and then calming down and doing tons of research (big shocker) myself, I found a doctor at UPenn who jumped right on the case, even coming in early the day after I called his office to see me. I have a lung and sinus scan tomorrow to stage the disease (as much as it can be without a biopsy, which he feels he can spare me from right now) and then I start nasty drugs. We'll see which ones based on the outcome of the scans and what my titer levels are this week.

Before then, I will focus on Sam's test (assuming he can have it), do a few fun Christmas things and have a few friends over for a list hurrah with margaritas on Friday night. I have my priorities.

It's the thought that counts

I've thought of posting lots. Does that count for something? I so want to make this blogging thing a habit again.

This week may be full of "news" and changes for us, so perhaps I'll have something more excited than "hey, we went to Costco. Again" to share! Sam is headed to the nutritionist this week. As a mom, I feel like I've always had pretty good instincts about what was going on with the kids. Not so much right now. The Reader's Digest version of the saga is that Sam just doesn't eat enough. The task before us now is to understand why. My suspicion is that we'll find more than one reason, making it infinitely more complicated to solve the problem.

No matter what, I'm anxious to have someone explain scary events like finding him upright in bed at 9 p.m., casually mentioning that he'll go to sleep once his food finishes going down his throat -- from dinner hours before. Perhaps someone will also explain why my child can't eat the "pointy part" of a slice of pizza.

Sounds so weird and I've spent a great deal of time begging him to not be so picky. I've tired every just-wait-he-won't-starve-himself trick and tactic in the book. Turns out he WILL starve. We've resorted to measures like protein shakes in the morning that do seem to help, but I'm just plain scared that he's not going to grow correctly with what he can and/or will eat.

So... now we start the long process of solving the mystery. Nutritionist this week. Endoscopy next month. Full-fledged feeding team after that. Stay tuned.

School's in Session

The boys are back at school, but I'm not sure we're quite yet in our groove. I'm pretty sure second grade has taken Sam by surprise. He had his first full day yesterday. I got home from work around 5 and he was falling asleep on the couch by 5:45. I had to get back to work, but found out from Rob later that he'd taken a bath and put himself to bed at 6:30 p.m. As sure as I was that we'd hear him up and about at 3 a.m., he actually stayed in bed until 6 a.m.!

Max seems to be just fine back in full-day preschool. He turns on the water works for Daddy when it's time for Rob to leave, but the teachers all say that he's perfectly fine within a minute.

Our bus schedule has been the newest thing to adjust to. To literally add injury to insult yesterday (the insult being that our bus stop has been moved because of the family who lived where we used to be, pushing our stop back to 8:50 a.m.) I was rushing into work yesterday morning and totally wiped out on my wet shoes when I entered the building.

I feel totally fine when I'm sitting down, but when I try to walk -- something I tend to need to do on a fairly regular basis -- my left knee laughs at me. It doesn't really hurt, but it feels like jell-o. My nurse mother was apparently not mocking me when she told me that she thinks I popped a ligament. Fabulous. I am going to see the doctor this morning in the hopes she has better news.

I really need to post the dreary, rainy back to school photos I took, but my memory cards and card reader are at work for a project I've been working on there. Oops!

Pardon the mess...

Working on a fancy pants new blog design. I'm having one little technical issue, which is why you see the background you do. Sales pitch: Becca Bonneville is AWESOME and coming to my rescue!! Hit up 2Peas if you need a pretty bloggie, too!

Natural Disasters

This has certainly been an interesting week for a vacation. We had absolutely beautiful weather early in the week... It was only 80 degrees when we visited Ocean City on Monday.

Tuesday, though, we experienced our very first earthquake. Amazingly, as many people that felt it, I haven't heard of anyone seriously hurt. My dogs might argue that they have been mentally exhausted. If I ever doubted what they can detect, I shouldn't. They both woke up around 1ish this morning, pacing, whimpering and generally acting looney. I woke up to find out that there had been a decent aftershock around that time. I didn't feel a thing (maybe a testament to my memory foam matress topper?!) but they definitely noticed something was amiss.

Today, it's been dark, dreary and rainy all day. I think we might get a reprieve for a while tomorrow, but only long enough to brace for Hurricane Irene that is headed our way on Saturday.

Why am I talking about the weather so much? Surely I have better things to say after such a long blogging break. All of this is to capture how utterly excited I am that along with my fever, my barometric pressure-induced headaches seem to also be a thing of the past. This kind of crazy back-and-forth weather *should* have me hiding in bed, holding my head and wishing someone would invent a drug to fix things for me. Instead, I'm enjoying watching the rain, cuddled up in a blanket with a lovely book and a fresh glass of iced coffee. It's nice. Really, really nice.

I think I'm back

I just looked at the date of my last post. Holy cow. It's been more than a year since I've blogged. As I said to an online friend yesterday, I just sort of gave up when I had what seemed like only icky things to talk about. Mind you, the past year hasn't been a bad one overall. I just don't like whining about personal stuff and I felt like it was all I could think about.

Here's the update: I had a fever for about 16 months. I'd also had it several years ago. Both times, I'd been examined up and down and inside out with no real answers. The stress, not to mention the fatigue, joint paint, etc. were exhausting. Well, after what seemed like a sure rheumatoid arthritis diagnosis, I went to a rheumatologist to get another opinion and find out what treatment I would need. I was DREADING the idea of more steriods. Well, within literally about 30 seconds, the guy told me that he thought if I stopped taking my Singulair, I'd probably lose the fever.

Lo and behold, about a day later I had no fever. Today is 14 days since that appointment and I am still fever free. I also have a ton more energy and virtually no joint pain. I still feel a little in my hands, but that doctor as well as a few others were so kind as to point out a couple of "age-related" issues I seem to have welcomed into my life.

The timing for the fever's end was perfect since we are all on vacation together this week. So far, we've had a day at the beach, a park day (with a little earthquake action thrown in for good measure) and a day at Storybookland. I've had plenty of energy for everything and feel better than I have in years. Yay me.

The boys probably deserve their own update. Sam is seven and as ready as he'll ever be to start second grade. He's currently quite happy to have learned that one of his best buddies is in his class this year. Max just turned three and will be be going back to the Laurel Tree Academy full-time. We *think* this will make this year a bit more manageable for all of us.

I'll try to be better about updating. I'm kind of regretting not capturing a few more of the daily kid stories than I have lately. The scrapbooks are good, but there's something different about just writing about what's going on.