The Kelsey Chronicles

2002-11-20T12:24:00.000-08:00

Okay folks, comments are up at the new blog and we're pretty much moved over, except for the archives. I'll work on those, but all new information and updates can be found at our new home at http://home.attbi.com/~kelseychronicles

See you there!

...--Alli

2002-11-19T20:30:00.000-08:00

Okay, I just removed the YACCS comment system from this blog to see if that will help them work correctly on the new blog-- since I'm trying to convert over the same account.

...--Alli

2002-11-19T06:21:00.000-08:00

Boy, I'm having a blast over at the new site, and learning tons everyday!! Most of the links there are working now, but I'm still rummaging around for a comment system I can get to work-- I'm trying to convert my YACCs account over but I'm not having much success, and most of the other systems I'm finding want PHP support, which my ISP doesn't have. I'm working on it though, and appreciate your patience.

The archives from here will eventually land over at the new site, but exporting each entry and recoding the new Blog so the date stamp on the post is correct will be a rather long and labor-intensive process. Bear with me, and if you need to search back through posts, your best best right now is to use this site and rummage through here if the post occured before the new site was up. TIA!

...--Alli

2002-11-17T16:47:00.000-08:00

Okay, the original post is back up and posted on the new KC site for your reading pleasure!

A few notes: Yes, I know that none of the links are working and there are no comments or counters on the page yet. Bear with me, they're coming, but I'm just thrilled that I can post and it looks like a Blog for the moment! You can comment here for now or email me if you need to, 'kay? Thanks!!

...--Alli

2002-11-17T13:47:00.000-08:00

ummm, I think I may have nuked my previous entry, you know-- the one I just linked you to? Hang in there with me, and pardon my futzing, okay? I'll retype it for you, I promise!!

...--Alli

2002-11-17T12:14:00.000-08:00

pssst-- it's very plain at the moment, but take a peek at the new home for The Kelsey Chronicles!

...--Alli

2002-11-16T15:40:00.000-08:00

Today we had Izzy's 'friend' birthday party-- Monday is the family party, on her actual birthday. Here is where we had it, and boy did they have a blast!! (scroll down to the botton of the page and look at all the cool things there are to do there!) We could have easily spent another couple of hours there, they had so much cool stuff to do! It was a huge hit and, best of all, it wasn't in my house and I didn't have to cook or clean up after it. It doesn't get much better than that for a seven-year old birthday party!

We left Kelsey home with Respite, since I knew she'd over-stim in the first five minutes we were there and be miserable the entire rest of the time. Monday she'll have a chance to celebrate with Izzy under much quieter, calmer circumstances.

...--Alli

2002-11-13T07:28:00.000-08:00

'morning, folks! Two quick things for now...

First, thank you SO much for all the great suggestions on finding pretend money-- I got to Walmart and found the perfect things there, just as you all described! So far so good... Izzy missed the bus again yesterday but made sure to call me and let me know where she was, because she knew if I had to come get her without her calling it'd cost her 20 cents, but if she called me to tell me where she was, she's only have to pay me 10.

Secondly, there's a new email addy you can send comments and questions to: click here to get in touch with us. I think I've found a way to host the KC on my own webspace that comes with my IP, but I'm still working on getting it set up, so stick around here for now and I promise I'll make sure you know how to find us! More later.

...--Alli

2002-11-12T10:54:00.000-08:00

I think both girls are feeling better by the day, but niether is really "up to snuff" yet, as we say in my family. I got really sick over the weekend and was grateful that I got my own script for antibiotics on Friday and had a headstart before things went supernova on Saturday night/Sunday day.

Kelsey has actually had a couple of really nice days in a row now, hopefully the report will be good when I get her off the bus in about half an hour ::knocking on all wood in sight::

I am noticing something with Kels that makes me wonder if she's struggling with some dyslexia issues on top of everything else, and I'm not sure if it's one of those "developmentally appropriate, goes away on it's own in time" things or something we should be working on. For example, we have this LeapFrog electronic alphabet toy she likes to play with. About half the time, she'll play with it upside down, and if I turn it right side up she'll put it upside down again before continuing to pick out letters. She also very consistently identifies a lower case "D" (d) as a "P" (p), for example. What do you guys think, do I add it to the worry list or not?

I'm drowning in forms and appeals and paperwork over here, they're trying to screw over Kelsey's SSI benefit once again and so I'm having to fight a never-ending battle on that, which really stresses me out. Today I got a call from the Met Life lady, who has been working for 2.5 years now to convince medical insurance companies to drop their lien against a trust fund they are trying to set up for Kels. There were leins totaling way more than 200 thousand dollars! She finally convinces them all to back down and allow them to try and set up some long-term protection for Kels, and now Medicaid has swooped in and is demanding every penny of the trust fund towards their expenses. [insert smoke coming out of Alli's ears here]

Now we have to get our own attny to try and fight Medicare for the monies in the would-be trust fund, and set it up in such a way that it will not eliminate her from continuing to qualify for Medicare benefits, since they are paying for everything right now and her needs will continue to be great for a long time to come.

Sometimes it seems like it never ends, KWIM? Some days I feel as if Kels needs her own personal appt secretary who can keep track of all the paperwork and call and badger/bully people to get out of her way and get her access to the things that she needs!

...--Alli

2002-11-08T19:07:00.000-08:00

I'm in the process of setting up a reward/consequence plan for Elizabeth, where she'll earn "x" amount of money as a base allowance, just for being a kid in our family, but she'll have the opporunity to earn more based on completion of chores and follow-through on promises.

For example, if she arrives at the place she's supposed to be after school-- the after-school program or home on the bus-- then she could earn 20 cents, let's say. Conversely, if I have to go pick her up and bring her home because she's not where she is supposed to be, I could 'charge' her 20 cents for having to go get her. If she misses the bus but remembers to call me and tell me where she's at, then perhaps I'd only charge her 10 cents instead of 20, KWIM?

She would then have the chance to buy things with her money, like a date with me to the movies on 50 cent movie Wednesdays at the local dollar theatre, or candy or whatever. If Rosie needs something like a new toy, then I could tell her that she'd have to pay "x" amount of the cost out of her own money and then I'd pick up the tab for the rest.

The goal is to give her a sense of independance and freedom but attach very tangible consequences for her choices. It also will just about completely eliminate our now almost-constant power struggles. Now, I can ask her to hang up her coat once for free, and then tell her that she can either choose to hang it up for a dime, or I can charge her a dime to have to do it myself. Simple.

Anywho, the point of this post is that I'm having a really hard time finding pretend coins to do this with. I want to have something I can put in a jar on the countertop, a tangible visual reminder of where she stands vs what she needs for whatever she's working on buying at the time. We need to have $.5, $.10, $.25 and $1.00 to make it work, I think.

Does anyone know of a place where I could get some pretend currency like I'm describing? I've checked grocery stores and local dollar stores, to no avail. Maybe a local school supply place? Zainy Brainy? Where do homeschooling folks who are introducing the concept of money buy their supplies? I'd welcome any ideas or suggestions. TIA!

...--Alli

2002-11-07T15:27:00.000-08:00

I found out this afternoon that I get to have surgery to finally fix my sinuses.

I've had chronic sinus problems... most of my life, actually. I get lots of sinus infections, sinus headaches, and have a steady river of post-nasal gunk down the back of my throat (sorry if that's TMI for some of you LOL). My doc got tired of seeing me every 8-10 weeks with another sinus infection (many of which ran straight down my eustachian tubes and gave me painful ear infections as well), so they did a head CT and found that my sinuses are pretty funky.

Apparently, my septum is so deviated that it bends back on itself-- almost like the letter "U". My left nostril is mostly occluded, so things can't drain down and medicine (like nasal sprays) can't get up to where they need to work, either. I have some polyps in my left sinus cavity they're going to remove and then they're going to widen the "doors", or the openings between my sinus cavities and my nostrils, to help things to drain. Right now there's only a very tiny opening for that to happen through, apparently.

He said it should take about 2.5-3 hours and that they'll do the whole thing endoscopically! Same day surgery stuff, but I'll be out of commision that whole day and then pretty much the next three days (bending my head over or lifting will be very, very painful) and then I have to take it really easy for about the first week, and then I can resume as tolerated. They promise lots of good pain meds LOL

Then, they see you weekly for about 6 weeks post-op to monitor healing and scar tissue (sometimes making adjustments under local anesthesia during the appts-- the post op instructions tell you to take a pain pill before the appt and plan on being driven home-- sound pleasant to you, too? LOL)

Honestly though, I am so ready to be done with the constant problems that I'm looking forward to having the surgery done and 'getting on with the next part!)

I'm making them wait until after both my Christmas concerts with the Choral Arts Society of Utah (I sing with them) and then doing the surgery right after that.

Honestly, this has been such a constant PITB for me for so long that I'm looking forward to finally getting it taken care of! (I'm just counting on those good pain meds!)

...--Alli

2002-11-07T07:48:00.000-08:00

Hey, gang = )

We're still trying to get everyone healthy on this end, with varying degrees of success. Izzy has a bit more color in her face now but still sounds gunky and isn't acting like she feels well and continues to be grumpier than snot (just how grumpy is snot, anyway?)-- all signs that she's not feeling up to snuff.

Kelsey had a rough day at school yesterday, but did well in therapies once she got home. The day went downhill from there, though, and we had a bumpy-grumpy afternoon and evening. We're all gritting our collective teeth and hoping that the antibiotic will catch up to her soon.

I'm getting really frustrated with Blogger and it's various error messages and slow load times. Then there's the flat-out down time and the on again-off again relationship it has with my comment software. I know not every word I write is riveting, but it's one of my favorite things to come check and see if anyone's commented KWIM?

My IP doesn't support the type of file types I'd need to host my own weblog, so I'm kind of at a loss as to "Plan B" for the Kelsey Chronicles. Does anyone out there know of another blog software that I could switch to instead of Blogger? I think I'm shopping. I'd need to be able to pull over my archives from here, have comment software and preferably an email nudge when there's a new comment so I don't have to manually rummage through recent posts to discover new stuff.

If the comment feature on here isn't visible when you read this and you have an indea, feel free to email me instead so that you can still have your say on what you read. Sometimes when Blogger is too slow loading the software times out and it looks like I've removed Comments from the Blog. I promise I haven't, though-- I'm just being sabotauged by the software!

...--Alli

2002-11-05T08:29:00.000-08:00

The word for the day is vote. Why? You have to, that's why. If you don't, how will you ever be able to look in the eye all of those brave men and women who are even now on foreign soil risking their lives defending your right to cast your ballot??

Be heard today! Make your voice have a say in your choice for local leadership and issues.

...--Alli

2002-11-04T17:51:00.000-08:00

Just checking in... we're still here, but struggling to get and keep everyone healthy.

Kelsey, Elizabeth, my friend Kim's daughter Sarah (whom I borrow on occasion), the respite worker and I headed off to the dollar theatre to see Lilo and Stitch. What a wonderful movie!! We just loved it. Well, Izzy, Sarah and I did. Juliette and Kels spent about an hour and 57 minutes from the 2 hours we were there wandering the lobby.

Juliette said that Kels actually had a wonderful time playing in the lobby and arcade area while the rest of us were watching the movie. Juliette freed Kels from her wheelchair so she could tear around a bit, and before you know it Kels had conned one of the housekeepers out of their mini broom and dustpan and was having the time of her young life helping to sweep the floors. The highlight of their experience apparently came near the end of the movie. Kesl spotted this guy sulking in a corner of the arcade and really took a shine to him.

Apparently, the fellow was dressed pretty heavily in early-American Goth, so he was all decked out with the requisite hairdo, pale makeup and darkness around his eyes. He was wearing leather all over and there were apparently spikes involved in his fashion statement at some point, although I am not sure where at the moment. (Some things are better left un-asked, you know) Kelsey apparently waited patiently for the moment Juliette's guard was down and bolted for her new friend with all the speed she could muster.

She flung herself at him and wrapped her arms around him at the highest point she could reach, as if he were a dear, lost friend she had just found again.

"HIIIIIII!!!!!!!", she yelled delightedly as she tackled him. "I so glad I see you. I just LOVE you!!" she said, as she squeezed him with all her might. He, meanwhile, had paled visibly beneath his already-pale makeup and was looking frantically around for help from any corner he could find. Juliette rescued him quickly, but the poor guy's likely seeking some therapy now. Too bad. He has no idea how lucky he really was yesterday to be the recipient of such ardent and sincere attention. I suspect if I could bottle up Kelsey snuggles and hugs and sell them on the open market that folks would line up from coast to coast to be first in line to buy some, a case at a time. They're that good. Really!

Izzy and I found ourselves at a local urgent care center yesterday, getting her diagnosed with a double ear infection. Kelsey got her own matching antibiotic today when she was diagnosed with Strep throat. It does explain Kelsey's grumpiness and short fuse in the past week, though, and it means that the problem doesn't lay with her shunt-- a huge blessing.

The good news is that after 24 hours or so, she'll start to feel lots better and likely get back in touch with her more sweet and mellow side. The bad news is that she's contagious until the 24 hour mark so I have to keep her home from school tomorrow. Juliette has agreed to rescue me long enough for me to go to my therapy appt in the morning and then to vote, so we've covered all the bases I think.

Now I've got to call Kelsey's other respite workers and tell them to get rapid-strep tested, as well as let her teachers at school know. Hmm, gotta call the bus garage, her therapists... I'm off to make a list and check it twice.

...--Alli

2002-10-31T12:25:00.000-08:00

First, credit where credit is due, I stole this story shamelessly from a hilarious page I found here . It's not a blog with links I can use to take you to a certain area of the page, so I'm going to copy and paste the whole story here, exactly as I found it on Jason Cromer's site.

This is the story of the night my ten-year-old cat, Rudy, got his head stuck in the garbage disposal. I knew at the time that the experience would be funny if the cat survived, so let me tell you right up front that he's fine. Getting him out wasn't easy, though, and the process included numerous home remedies, a plumber, two cops, an emergency overnight veterinary clinic, a case of mistaken identity, five hours of panic, and fifteen minutes of fame.

First, some background. My husband, Rich, and I had just returned from afive-day spring-break vacation in the Cayman Islands, where I had been sick as a dog the whole time, trying to convince myself that if I had to feel lousy, it was better to do it in paradise. We had arrived home at 9 p.m., a day and ahalf later than we had planned because of airline problems.

I still had illness-related vertigo, and because of the flight delays, had not been able to prepare the class I was supposed to teach at 8:40 the next morning. I sat down at my desk to think about William Carlos Williams, and around ten o'clock I heard Rich hollering something indecipherable from the kitchen. As Iraced out to see what was wrong, I saw Rich frantically rooting around under the kitchen sink and Rudy or, rather,Rudy's headless body scrambling around in the sink, his claws clicking in panic on the metal. Rich had just ground up the skin of some smoked salmon in thegarbage disposal, and when he left the room, Rudy (whom we always did call a pinhead) had gone in after it.

It is very disturbing to see the headless body of your cat in the sink. This is an animal that I have slept with nightly for ten years, who burrows under the covers and purrs against my side, and who now looked like a desperate,fur-covered turkey carcass, set to defrost in the sink while it's still alive and kicking. It was also disturbing to see Rich, Mr. Calm-in-an-Emergency, at his wits end, trying to soothe Rudy, trying to undo the garbage disposal,failing at both, and basically freaking out.

Adding to the chaos was Rudy's twin brother Lowell, also upset, racing around in circles, jumping onto the kitchen counter and alternately licking Rudy's butt for comfort and biting it out of fear. Clearly, I had to do something.

First we tried to ease Rudy out of the disposal by lubricating his head and neck. We tried Johnson's baby shampoo (kept on hand for my nieces' visits) and butter-flavored Crisco: both failed, and a now-greasy Rudy kept struggling. Rich then decided to take apart the garbage disposal, which was a good idea, buthe couldn't do it. Turns out, the thing is constructed like a metal onion: you peel off one layer and another one appears, with Rudy's head still buried deepinside, stuck in a hard plastic collar. My job during this process was to sit on the kitchen counter petting Rudy, trying to calm him, with the room spinning (vertigo), Lowell howling (he's part Siamese), and Rich clattering around with tools.

When all our efforts failed, we sought professional help. I called our regular plumber, who actually called me back quickly, even at 11 o'clock at night (thanks, Dave). He talked Rich through further layers of disposal dismantling,but still we couldn't reach Rudy. I called the 1-800 number for Insinkerator(no response), a pest removal service that advertises 24-hour service (no response), an all-night emergency veterinary clinic (who had no experience in this matter, and so, no advice), and finally,in desperation, 911. I could see that Rudy's normally pink paw pads were turning blue. The fire department, I figured, gets cats out of trees; maybethey could get one out of a garbage disposal.

The dispatcher had other ideas and offered to send over two policemen. This suggestion gave me pause. I'm from the sixties, and even if I am currently a fine upstanding citizen, I had never considered calling the cops and asking them to come to my house, on purpose. I resisted the suggestion but the dispatcherwas adamant: "They'll help you out," he said.

The cops arrived close to midnight and turned out to be quite nice. More importantly, they were also able to think rationally, which we were not. They were, of course, quite astonished by the situation: "I've never seen anythinglike this," Officer Mike kept saying. (The unusual circumstances helped us get quickly on a first-name basis with our cops.)

Officer Tom, who expressed immediate sympathy for our plight. "I've had cats all my life," he said, comfortingly also had an idea. Evidently we needed acertain tool, a tiny, circular rotating saw, that could cut through the heavy plastic flange encircling Rudy's neck without hurting Rudy, and Officer Tom happened to own one. "I live just five minutes from here," he said; "I'll go get it." He soon returned, and the three of them Rich and the two policemen got under the sink together to cut through the garbage disposal.

I sat on the counter, holding Rudy and trying not to succumb to the surrealness of the scene, with the weird middle-of-the-night lighting, the room's occasional spinning, Lowell's spooky sound effects, an apparently headless cat in my sinkand six disembodied legs poking out from under it. One good thing came of this:the guys did manage to get the bottom off of the disposal, so we could now see Rudy's face and knew he could breathe. But they couldn't cut the flange withoutrisking the cat. Stumped.

Officer Tom had another idea. "You know," he said, "I think the reason we can't get him out is the angle of his head and body. If we could just get the sink out and lay it on its side, I'll bet we could slip him out." That sounded like agood idea at this point, ANYTHING would have sounded like a good idea and as it turned out, Officer Mike runs a plumbing business on weekends; he knew how to take out the sink!

Again they went to work, the three pairs of legs sticking out from under the sink surrounded by an ever-increasing pile of tools and sink parts. They cut the electrical supply, capped off the plumbing lines, unfastened the metal clamps, unscrewed all the pipes, and about an hour later, voila! the sink was lifted gently out of the countertop, with one guy holding the garbage disposal (which contained Rudy's head) up close to the sink (which contained Rudy's body). We laid the sink on its side, but even at this more favorable removal angle, Rudy stayed stuck.

Officer Tom's radio beeped, calling him away on some kind of real police business. As he was going, though, he had another good idea: "You know," he said, "I don't think we can get him out while he's struggling so much. We needto get the cat sedated. If he were limp, we could slide him out." And off he went, regretfully, a cat lover still worried about Rudy.

The remaining three of us decided that getting Rudy sedated was a good idea, but Rich and I were new to the area. We knew that the overnight emergency veterinary clinic was only a few minutes away, but we didn't know exactly how toget there. "I know where it is!" declared Officer Mike. "Follow me!" So Mike got into his patrol car, Rich got into thedriver's seat of our car, and I got into the back, carrying the kitchen sink,what was left of the garbage disposal, and Rudy. It was now about 2:00 a.m.

We followed Officer Mike for a few blocks when I decided to put my hand into the garbage disposal to pet Rudy's face, hoping I could comfort him. Instead, mysweet, gentle bedfellow chomped down on my finger, hard really hard and wouldn't let go. My scream reflex kicked into gear, and I couldn't stop the noise. Rich slammed on the breaks, hollering "What? What happened? Should I stop?",checking us out in the rearview mirror.

"No," I managed to get out between screams, "Just keep driving. Rudy's biting me, but we've got to get to the vet. Just go!"

Rich turned his attention back to the road, where Officer Mike took a turn we hadn't expected, and we followed. After a few minutes Rudy let go, and as I stopped screaming, I looked up to discover that we were wandering aimlessly through an industrial park, in and out of empty parking lots, past little streets that didn't look at all familiar. "Where's he taking us?" I asked. "We should have been there ten minutes ago!" Rich was as mystified as I was, but all we knew to do was follow the police car until, finally, he pulled into a church parking lot and we pulled up next to him.

Rich rolled down the window to ask, "Mike, where are we going?"

The cop, who was not Mike, rolled down his window and asked, "Why are you following me?"

Once Rich and I recovered from our shock at having tailed the wrong cop car, and the policeman from his pique at being stalked, he led us quickly to the emergency vet, where Mike greeted us by holding open the door, exclaiming,"Where were you guys???"

It was lucky that Mike got to the vet's ahead of us, because we hadn't thoughtto call and warn them about what was coming. (Clearly, by this time we weren't really thinking at all.) We brought in the kitchen sink containing Rudy and thegarbage disposal containing his head, and the clinic staff was ready.

They took his temperature (which was down 10 degrees) and his oxygen level (which was half of normal), and the vet declared: "This cat is in serious shock. We've got to sedate him and get him out of there immediately." When I asked ifit was OK to sedate a cat in shock, the vet said grimly, "We don't have a choice." With that, he injected the cat; Rudy went limp; and the vet squeezedabout half a tube of K-Y jelly onto the cat's neck and pulled him free.

Then the whole team jumped into "code blue" mode. (I know this from watching a lot of ER.) They laid Rudy on a cart, where one person hooked up IV fluids,another put little socks on his paws ("You'd be amazed how much heat they lose through their pads," she said), one covered him with hot water bottles and ablanket, and another took a blow-dryer to warm up Rudy's now very gunky head. The fur on his head dried in stiff little spikes, making him look rather pathetically punk as he lay there, limp and motionless.

At this point they sent Rich, Mike, and me to sit in the waiting room while theytried to bring Rudy back to life. I told Mike he didn't have to stay, but he just stood there, shaking his head. "I've never seen anything like this," he said again. At about 3 a.m, the vet came in to tell us that the prognosis was good for a full recovery. They needed to keep Rudy overnight to re-hydrate himand give him something for the brain swelling they assumed he had, but if all went well, we could take him home the following night.

Just in time to hear the good news, Officer Tom rushed in, finished with his real police work and concerned about Rudy. I figured that once this ordeal was over and Rudy was home safely, I would have to re-think my position on the police. Rich and I got back home about 3:30. We hadn't unpacked from our trip, I was still intermittently dizzy, and I still hadn't prepared my 8:40 class. "I need a vacation," I said, and while I called the office to leave a message canceling my class, Rich made us a pitcher of martinis.

I slept late the next day and then badgered the vet about Rudy's condition untilhe said that Rudy could come home later that day. I was working on the suitcases when the phone rang.

"Hi, this is Steve Huskey from the Norristown Times-Herald," a voice told me. "Listen, I was just going through the police blotter from last night. Mostly it's the usual stuff: breaking and entering, petty theft, but there's this one item. Um, do you have a cat?"

So I told Steve the whole story, which interested him. A couple hours later hecalled back to say that his editor was interested, too; did I have a picture of Rudy? The next day Rudy was front-page news, under the ridiculous headline"Catch of the Day Lands Cat in Hot Water."

There were some noteworthy repercussions to the newspaper article. Mr. Huskey had somehow inferred that I called 911 because I thought Rich, my husband, was going into shock, although how he concluded this from my comment that "his pads were turning blue," I don't quite understand. So the first thing I had to dowas call Rich at work--Rich, who had worked tirelessly to free Rudy--and swear that I had been misquoted.

When I arrived at work myself, I was famous; people had been calling my secretary all morning to inquire about Rudy's health. When I called our regular vet (whom I had met only once) to make a follow-up appointment for Rudy, the receptionist asked, "Is this the famous Rudy's mother?"

When I brought my car in for routine maintenance a few days later, Dave, my mechanic, said, "We read about your cat. Is he OK?" When I called a tree surgeon about my dying red oak, he asked if I knew the person on that streetwhose cat had been in the garbage disposal. And when I went to get my hair cut,the shampoo person told me the funny story her grandma had read in the paper, about a cat who got stuck in the garbage disposal. Even today, over a year later, people ask about Rudy, whom an 9-year-old neighbor had always called "the Adventure Cat" because he used to climb on the roof of her house and peer in the second-story window at her.

I don't know what the moral of this story is, but I do know that this "adventure" cost me $1100 in emergency vet bills, follow-up vet care, new sink,new plumbing, new electrical wiring, and new garbage disposal, one with a cover. The vet can no longer say he's seen everything but the kitchen sink.

I wanted to thank Officers Tom and Mike by giving them gift certificates to the local hardware store, but was told that they couldn't accept gifts, that I would put them in a bad position if I tried. So I wrote a letter to the Police Chief praising their good deeds and sent individual thank-you notes to Tom and Mike, complete with pictures of Rudy, so they could see what he looks like with his head on. And Rudy, whom we originally got for free (or so we thought), still sleeps with me under the covers on cold nights and unaccountably, he still sometimes prowls the sink, hoping for fish.

Mandy Wunder
Director of Planned Giving
Columbia College
1301 Columbia College Drive
Columbia, SC 29203

2002-10-30T18:23:00.000-08:00

This sweet little boy was admitted to the hospital after his accident during the time that Kels and I were inpatient for one of her many shunt revisions last year. Actually, his accident happened a bit before we were admitted, but he was transferred from PICU and hit the Rehab floor about the same time we did, if that makes sense.

All three of our therapists (Physical therapy, Occupational Therapy, Speech Therapy) also treated Zach. (that's what happens when you work with the "A" team, you get to share your therapists with other incredible and tenacious kids like yours who need the very best) Although Zach's mom and I had never met, anecdotes and stories filtered through from the therapists we shared and I felt like I knew her on some level and I'm sure she felt the same.

Like our situation, the dad couldn't/wouldn't deal and choose to leave, so she found herself not only the mother of a suddenly disabled and incredibly medically fragile child, but also a single mom.

Zach passed away very unexpectedly during the night between Monday and Tuesday of this week. He had a trach and apparently had respiratory arrest, mom didn't find him until several hours later and tried to revive him anyway, unsuccessfully. It's the worst and most secret primal fear of every special needs mom, I think. All moms, but special needs moms even more so, because we've already come so close to loosing them at least once before and we've fought back so incredibly hard to keep them here and help them become/remain strong and healthy KWIM?

I went to his funeral today. It was the least, the very least I could do. Zach has an older sister named Abby who just turned six and who has long, dark hair and a wise old soul. She was incredibly involved with Zach's caregiving and was his primary playmate. She offered the closing prayer at the funeral. My heart just breaks for this family.

...--Alli

2002-10-30T07:41:00.000-08:00

Yesterday, Kelsey had a regular follow-up with her Opthamologist up at the hospital. He continues to be very pleased with the way her eyes look and her progress, and he was thrilled to hear about her coming off the Seroquel and being happier as a result.

He announced at the appointment that he thinks it's time to put her in a pair of safety glasses as a way to protect both eyes, and give us a little insurance against the day when we can get that one eye back open again. I was proud of myself for managing to hold back any outburst of laughter at this idea, after all, his premise is solid. In what I thought was an amazing display of self control I managed to limit myself only to a smile, imagining all the fun she'll have with new and handy ammunition to chuck at the person-she-is-frustrated-with-at-the-moment.

"You'll want to look into extended warranties, I think" he said helpfully. "...and you'll want to make sure you pick something that's pretty and cute, but also rather sturdy," he concluded, allowing a pointed discreet glance in Kelsey's direction.

To borrow a phrase from my good friend Brook, "Gee whiz, Captain Obvious-- you put on your cape and tights just to tell me that? I'm flattered!!"

So, my new mission is to find a place that will accept Medicaid and not be afraid to back up their extended warranty policy. Every other week or so. I'll do it, but I can't promise not to snicker in the process...

...--Alli

2002-10-30T07:30:00.000-08:00

It's snowing outside, the first snow of the season here in my part of the Salt Lake Valley. We woke up to a decent dusting and currently there is a steady, beautiful rain of snowflakes falling in slow motion outside my window. If I just concentrate on the snowfall, it could easily be a picture postcard from some Alpine ski resort. The kids were entranced by it too, for all of about 45 seconds. Then it was a race to see who could manage to get out the door with the least amount of layers and into the wet stuff first.

"I wanna play in the SNOOOOOWWWWW!!!" wailed Kelsey, as her head left her shoulders and began to spin in a counter-clockwise direction. Elizabeth managed to make it out of the house without her sweatshirt, although she did agree to put on a winter hat underneath the hood of her coat in acknowlegement of the colder weather.

In spite of the fact that there is less than an inch out there, they both managed to produce some semblance of a snowball and deck each other in the time it took me to get Kelsey's wheelchair out of the trunk of the car and assembled for the day.

Brrrrrr!! It's cold out there!

...--Alli

2002-10-26T18:07:00.000-07:00

Kelsey continues to do really well overall. She's been struggling with a bit of a tummy bug the last several days, but aside from the urpiness she's been in a really great mood-- really fun to be around. A formidible source of laundry, but charming before and after the urp.

We took the plunge and added a new member to our family yesterday. She's a four-week old black bear hamster who Elizabeth promptly christened "Rosemary". Rosie the Hamster it is, then, even though it will be weeks still before we can tell the sex (if it turns out to be a boy hamster, we're still calling him Rosie, we'll just get him into therapy later) I entered into this with no small amount of trepidation, I mean c'mon... we're struggling to feed the human members of the family, never mind adding those of other species. After the inital cost, though, we priced upkeep and found it to be very minimal per month. (About 6 bucks for a huge bag of bedding and a huge bag of food)

The theraputic benefit of Elizabeth having something to hold, pet and love on can't be understated, either. She has been begging steadily and earnestly for a pet for two and a half years now, and she has an almost Peter Piper-like quality with small animals. Strange cats are drawn to her, along with dogs and other small animals. She connects with them. Her former therapist remarked to me more than once that if she could get one of her two cats in Elizabeth's lap and Izzy could hold and pet her, she'd sit and talk about what was in her heart for hours with almost no prompting at all. I'm hoping that Rosie will help her to deal with her high levels of anxiety and increase her coping skills for the many stresses in her life.

Rosie has one of those clear plastic balls to walk around in once she gets a bit bigger (like Elephant has on Little Bill and we're hopeful that will limit Kelsey's ability to get to her. For the moment, at least, Kelsey seems to be much more interested in Rosie's cage, playground and chew toys than she is in the small black thing scurrying around inside. Maybe I should just buy a second indentical set for Kels-- they sound like perfect things for her LOL

Our inital investment turned out to be much less than I had budget for. When the dad handed over Rosie to me she was all decked out with everything I had just bought for her. "Athena [Izzy's friend] told me last night that she'd promised Elizabeth that the hamster would come with a cage," he explained. "I believe it's very important to keep your promises." So she already had a great cage, a wheel, a water feeder and a food dish when we got her-- a huge blessing.

Lest they be separated for more than a minute, Izzy took Rosie and her travelling home down to her dad's house for the weekend when she left on Friday. She called me today to assure me that Rosie was just fine and slept well on her first night at Daddy's house. Rather than be apart, she apparently took Rosie with her while they did errands this morning, so Rosie had already been to the Chapel and the local mega mall by the time we spoke LOL She's going to be the best travelled hamster in the state before we know it!

Today I did something just for me. While Kels was out cavorting with Respite, I went to my own local mega mall and spent a Lane Bryant gift certificate I've been hoarding since spring (I didn't like LB's spring lineup at all, so I held out for fall). I came home with a new pair of jeans and a really comfy go-with-everything all-purpose black shirt. My total cost after using the gift certificate? Ten cents... and the jeans were a whole size smaller than I thought they'd be-- yeah, ME!

...--Alli

2002-10-21T21:00:00.000-07:00

Thanks to the wonders of e-ticketing, one of Kelsey's cyber-aunties logged onto the website of our local theatre and bought her four tickets to see Jonah: A Veggitale Movie this afternoon. It was an incredibly sweet and generous gift, and very thoughtful: the fourth ticket went to our Respite worker so that if Kels needed to be taken out, then Izzy wouldn't have to leave the theatre as well.

Izzy was so excited about the trip today that she was close to spontaneous combustion. Kels didn't really "get" it until we were there in the theatre; she's only seen one other movie in the movie theatre in her whole life, it was pre-accident and I doubt she even remembers it YK? I wish that I'd had a camera to record the expression of amazement and wonder on her face when the movie trailers started and she finally understood what was going on. She was entranced.

For most of the first hour of the 90-minute movie, she sat there and stared in wide-eyed wonder. Occasionally she would call out, "Mom!!" and simply point to the screen, speechless. The last half hour got a bit dicey, she was very tired and very hungry (a sure prescription for disaster with any young child) and she needed to go potty. The respite worker took her out briefly in the last half hour, but she lasted the WHOLE movie!! I was SO proud of her!!

The movie theatre was on about 72nd South, and as we were on the way to the movie crusing through the intersection at about 62nd Kels gagged once, thought about it a few seconds, and let loose all over herself. This is how amazing our Respite worker is, at the first gag, she fished through the rubble on the floor of the back seat, managed to find a baggie, and then was quick and brave enough to catch about 85 percent of the contents of Kelsey's stomach IN the bag and prevent a much bigger catastrophe. I keep an emergency bag in the trunk known fondly as "the barf bag" that is stocked with towels, an emesis basin, new clothes etc etc and so we re-dressed her out of that and marched undaunted into the movie theatre anyway.

I've seen typical five-year olds who didn't do as well at the movie as she did today!! And I'm SO grateful that Juliet was there to save the day-- there's no way I could have managed it by myself!

Kels had only one agression at school all day today, overall she's doing fabulously well off the Seroquel. Go, Kels!!

...--Alli

2002-10-20T20:23:00.000-07:00

Thanks so much for the birthday wishes for Miss Magoo. She had SUCH a great day and was just stunning at her party today. She was calm, friendly, charming, shared toys and gave out kisses-- it was SUCH a victory for her!!

I made a HUGE deal out of keeping it very simple and low key so she wouldn't get over-stimmed. She hates crepe paper and stuff on the walls for decorations, because it drives her nuts if stuff is out where she can see it that doesn't 'belong' there, KWIM? Very very small guestlist, just immediate family and my brother/wife and four cousins that she knows well and sees all the time, a birthday cake with Bob the Builder on it and two mylar baloons. That was it. We kept it to an hour.

Because my digi cam died several months ago, I had no way to record the party on my own. My brother brought his digital video camera and was kind enough to tape/take stills for me, and then my SIL worked their still camera, so I'm very hopeful I'll have some pics to share once they get their film developed and I can hook up their camera to my computer and download.

...--Alli

2002-10-19T17:48:00.000-07:00

Izzy is MUCH better, thank goodness!! She really wanted to go to school on Friday, but I kept her home in spite of her protests. She has a history of pushing too far too fast after being sick and winding up sicker the second time than she was in the first place KWIM? Plus I didn' t want to expose anyone in her class that hadn't already been exposed. We've stayed mostly inside and been lazy bums, and I think the extra rest has been good for her. Other than a cold, she seems just fine now. Thanks for all your good thoughts and prayers!!

I held Kelsey's Seroquel yesterday afternoon and again last evening. She hasn't had any today, either and her demeanor has improved by the hour from her last dose. If I don't want to rip her off cold turkey I suppose I should give her a small amount tonight, but the thought of possibly sabotauging her birthday day tomorrow makes me think we should wait another day. If we do that though, then by bedtime tomorrow she'll probably be almost completely off and then why would I give her any to keep her level higher instead of letting it work itself out of her system? It's a delima, and I'll need to figure it out at some point in the next hour before I make up nightime meds.

...--Alli

2002-10-18T11:08:00.000-07:00

Holy Hannah!! To hell with this 4-5 week plan of tapering off the Seroquel. The beast is back with a vengance. WOW! I can't beleive the difference could be so dramatic after two doses of Seroquel. We're sure not going to do THIS for 4-5 more weeks. I won't do it to her. I won't do it to those that love her and work with her. I won't do it to those who happen to be within throwing range. We're going to be very aggressive in getting this stuff the heck out of her system as fast as I can possibly manage it. New plan, boys and girls. I'll get forgiveness from the NeuroBehavioral Clinic later.

Hopefully she'll start to mellow this afternoon as she misses her next dose, and by tomorrow morning we'll have a happier girl again.

...--Alli

2002-10-17T19:03:00.000-07:00

This one is going to take a bit longer, but trust me it's worth it at the end LOL

Yesterday morning was the first day back to school for my two, since they had a long weekend thanks to the Utah Education Association conference (the local teacher's association). I don't know about your house the first day back to school after a break, but at our house we were completely out of our normal routine and a bit harried to find all the proper backpacks and shoes and school things and get people on their buses.

I came back into the house after putting the last one on the bus and entered the kitchen. There, sitting on the counter, were Kelsey's 8AM meds, still in the their syringes. I had forgotten to give them to her before we left. UGH. For my reward I had to drive down to school and give her the meds there. I had a 9AM meeting at the house and so by the time I got to her at school it was 10. By this time meds were two hours late and I cringed at the thought of what they were likely dealing with in her classroom.

I walked in, and instead of being miserable they were literally jumping up and down with joy and couldn't have been more excited that I popped in to witness Kelsey's behavior.

"She's having an absolutely phenominal day," they bubbled. "This is by far the best day we've ever, ever, EVER had with her!! Just LOOK at her!!"

She was quite an amazing sight to see. She was completely calm, happy and mellow. She was playing appropriately, sharing with other kids, taking turns and generally being delightful and charming. Sure she looked like my Kels, but this kid was blowing everyone away, me included.

"What on earth did you DO to her?? insisted the staff. "I forgot to give her the morning meds..." was all I could offer in explaination.

"Well, we think you should forget EVERY DAY!" they said almost in unison, as if they had rehearsed it LOL

I decided to 'forget' to give her the meds again and volunteer an hour of parent time instead before heading home with my syringes. She had not ONE single aggression at school that day. Not ONE. She usually averages between 30 and 70 on any given day, and the first day back after a weekend is always worse as she gets back into the routine.

That afternoon I held her Seroquel again (remember this is the med that we've been trying to increase thinking it was helping) and we had the most delightful afternoon!! The OT arrived determined to administer a standardized developmental assessment test-- normally a prescription for disaster with Kelsey. They had to give her one new hard task after another until she topped out so they could assess her level, and to make matters worse they had to time her as well.

Kelsey was as pleasant and cool as a cucumber the whole time. Not ONE single complaint or protest. Not one thing was thrown or chucked at anyone. It was amazing.

This morning I held my breath as well as the Seroquel. She had another fantastic day. Huston, I think we may be on to something here. I'm afraid to even type it out loud, but WOW! Look at the difference in her behavior!

The Neuro Behavioral Clinic is having a heart attack at me ripping her off the med so suddenly, and I hate to admit it but they're right. She's been on this for a long time and we can't just yank her off it overnight. We're going to have to taper her down. I have a schedule to do that, and tonight I gave her the first (smaller) dose from the schedule. I hate to give it to her because I'm pretty certain it's going to make her lots less happy, not more, and she's been SO charming and happy the last two days, but I understand the wisdom behind the tapering.

I guess it will give us a chance to confirm our theory, I guess. If she's more grumpy and less happy with the reduced Seroquel in her system, we'll know that we've found at least part of her problem at last.

2002-10-17T18:46:00.000-07:00

Two pieces of news today, I'll put them in two separate posts for easier reading.

This morning I picked up a very nauseous and urpy Elizabeth from school and brought her home for lots of extra snuggles. I guess it's officially flu season-- and we haven't even had a chance to get our flu shots yet, argghhhh!! I'm praying that we can get her through this and out the other side without Kelsey catching it too. From all I've heard it sounds nasty, and so far all I've heard seems to be true = (

{{{{{Izzy}}}}}}

...--Alli

2002-10-15T15:43:00.000-07:00

Another day, another very grumpy Kels. AARRGGHHH. We check in with the Neuro Behavioral Clinic this Thursday, maybe they'll have some insight on what to adjust. The worst rages seem to come a couple of hours after the higher dose of Seroquel, but the other day I tried to give her the lower dose both times and she still fell apart, so I dunno.

Izzy comes home at last today-- she's been down at her dad's for the long UEA weekend. (Utah Education Association conference) We've really missed her!!

I finally got the notice about Kelsey's school pics, did I tell you? End of October-- we'll see if we can keep her face in good shape until at least then.

...--Alli

2002-10-13T12:57:00.000-07:00

::dusting off Blog:: anybody still out there?

We're here, just harried and hurried beyond belief.

Kels loved the first medication change we made-- she was just delightful and charming and so much better that we decided to try more of the same and pushed her a little farther. So far that hasn't seemed to be a wise move, she's been a bear since a week ago Saturday when we switched her. It's a bit early to give up yet though, it's possible that levels are still coming up (and coming down; we increased one and decreased the other) so we're gritting our collective teeth and trying to hang in there another week at least. She attacked her eye (the closed right one-- a favorite target) really hard a couple of times yesterday and today it's all discolored and swollen = (

Izzy's doing pretty well, struggling with some increased anxiety issues that we're trying to pinpoint. Sleep has never been easy for her since the accident but lately it's gotten even worse-- I'm finding lights on in the mornining that I know I turned off and she's admitting to watching videos in the night or getting up to play on the computer when she wakes and can't get back to sleep. We're trying some new things we're hoping will help. Her teacher is just terrific this year and has been great about making sure that she's stimulated and happy in school. She's had children of her own that were precicious and so she has a great understanding and perspective on both the parent and the teacher side of the dilema.

I'm doing okay, working through some health issues of my own and trying hard to keep us from becoming a financial train-wreck until we have some income again. My brother's company was looking for some at-home beta testers and so I'm doing that part time for the moment (thank you, Ian!!!) but it won't pay until the product ships in November, so we're still without any income at the moment.

We're heading into birthday season here, Kelsey's is coming up on the 20th of this month and then Izzy will follow on November 18th.

...--Alli

2002-09-30T20:07:00.000-07:00

Sorry to have been offline so long, I'm pretty woozy still so you get a short update today.

I'd first like to state, for the record, that the words "oral" and "laxative" should never, ever be used in the same sentence. And there should be a law that they are never, under any circumstances, allowed to be used together in a product name description. Have I mentioned how much I loathe the prep process for a colonoscopy?

And then, after all that, today's procedure showed that the damn nasty stuff didn't even do a good job; they couldn't really see what they needed to see because it didn't clean out my colon well enough for them to get a good view. (And trust me, if my colon was not clean and shiny for them today, it was not from a lack of effort on my part) The reason for this is that apparently I have developed a really spastic colon, causing the prep to be ineffective. In other words, I can now add "Irritable Bowel Syndrome" to my list of diagnoses and I have to go back and see the endo doc for treatment on that.

The kicker is that I get to have another colonoscopy in one year so they can try to look again. Whoot.

...--Alli

2002-09-25T10:33:00.000-07:00

Things here continue to mostly trudge along without significant change... Kels is perhaps a bit less grumpy, and we're backing off on the Trilepital. Are the two related? Only time will tell.

Both girls are looking less like "Rocky" by the day, bruises from both shiners are at last starting to go away. At this rate, I think Izzy might not even have anything left to show in her school pics in early October!

Kelsey's IEP is tomorrow. I'm looking forward to it, the recent incident aside, I adore her school and think it will be a very productive meeting, once the 15 of us get settled in our seats and get the meeting going LOL (okay maybe less than 15, but easily more than 10!)

My colonoscopy is coming up on Monday-- it's a follow-up to one I had done five years ago. My dad passed away from colon cancer, and so I have a ticket to get mine tested regularly. Last one five years ago, they found and removed polyps (which all turned out to be benign) and so that's why I get to have another one now. Gotta go out and buy the Prep stuff. Blech.

I'm still agressively job-hunting, but no leads yet. Thats' about it from here.

...--Alli

2002-09-18T20:07:00.000-07:00

Yesterday, I got Kelsey off the school bus and had a minor heart attack: she had this HUGE goose egg around her eye and cheekbone, and it was all sorts of pretty colors. The bus aide saw my expression and apologetically explained that Kels had fallen at school and that what I saw was the result. "They didn't call you??" she said, incredulous. Not as disbelieving as I was, I promise you.

The rest of the afternoon I spent on the phone, carefully carving flesh from the backside of every staff person I could get access to at her school. Soon I had an incredibly apologetic and contrite phone call from her teacher, and she and I had a long talk about what I expected of them. Even if I hadn't sent them a brain-injured child that morning, that kind of injury deserves a phone call to Mom to inform them what happened and give them the opportunity to see the injury and decide on a course of action. But, this is a brain injured child with a shunt. HELLOOO????!!!!!

Today, she had a rough day at school and then was out playing with the Respite worker when she turfed it onto the concrete sidewalk outside while chasing after a ball. Her protective reflexes are crap from the injury, and so her head took the brunt of the fall. She now has this big goose egg on her forehead above the right eye and a nice patch of road rash to go with it. She looks ghastly. I am seriously afraid to take either of my kids out at the moment for fear that someone would take one look at them and call CPS.

Kelsey's behavior has been so agitated and out of control lately, I'm really fearful for her. School informed me a couple of days ago that they are going to start double-teaming her (2:1) in an attempt to get a handle on the situation. I doubt that the school can keep up that kind of staffing for long. Tonight I emailed our contanct at the Neuro Behavioral Clinic and explained the situation and begged for their input on what to do next. It's not lost on me that this last spike in behavior coincides with the increase of her Trilepital.

...--Alli

2002-09-15T10:21:00.000-07:00

Things around here have been a bit bumpy, and I apologise for my silence here.

Last Thursday, I got one of those hysterically-crying-can't-understand-a-word phone calls from Izzy at school. All I could make out was "hurt", "recess", "eye". Finally I verified that she was in the office, told her to stay put, and that Mommy was on the way (luckily Kels was with a therapist so I could just tear out of the house and go). Turns out that she collided with this other kid on the playground during a very intense game of "Red Rover, Red Rover". The other guy walked away with a small red spot on his forehead, but Izzy took the brunt of the blow. By the time I got there, her left eye was partially swollen shut from the huge goose-egg that was just underneath her eye, right on top of the cheekbone.

I did a quick Neuro assesment right there in the office, made them get me a pen-light and checked her pupils, checked her Cranial Nerves, tried to feel around her orbit to check the bones there and could go no further. She couldn't tolerate the least bit of careful touch anywhere near there. Off we went to the doctor for pictures.

The doctor thought the cheekbone was broken, but after studying the xrays concluded that it wasn't after all. She could very likely have a concussion, they said, and for sure she would have one helluva shiner. Turns out they were absolutely right on both counts.

I was functioning and outwardly calm, but inside I was flipping out. Head Injury. My kid. My God...

She's doing better now, the swelling has reduced tremendously, it's very bright and colorful and pretty, and I fully expect the note announceing school pictures to come home any day now. You know, between her huge shiner and the bruises on her face, and the left eye being the focal point, you combine that with the missing 4 teeth on the top (we lost another one last week) and she and Kelsey have an almost remarkable resemblance these days!

Kelsey has come down with the annual back-to-school-a-week-or-so nasty cold. Her little voice is very hoarse, her nose is runna-runny, she has diarrhea and an upset tummy, and she's cranky as hell. It has not been a good week for her sweet little battered face =(

What else, oh, yeah, factor in the news that I am once again jobless and you about have the picture. Cosmiverse is apparently closing and shutting down, so I'm out of a job. We found out for sure only this morning. They haven't paid us for about two pay periods now, either, and if you've been reading here long at all you know well that our budget just doesn't allow for any wiggle room, nevermind missed paychecks.

I think that's about all the cheeriness I can stand to type at the moment. I'm going to go get something to eat and then feel good and sorry for myself for a while, but I'll be back after the proper amount of chocolate = )

::vent mode OFF::

...--Alli

2002-09-11T00:16:00.000-07:00

While the 17th Century was still in its teens, William Bradford and George Carver sat beneath a swinging lantern in the cabin of the Mayflower and signed there the document which established a new settlement "to the glory of God and the advancement of the Christian faith."

The signers of the Declaration of Independance pledged their firm reliance on the direction of Divine Providence and George Washington prayed that God ould keep the United States in His holy protection. We inscribe on our currency, "In God we trust"

Our prayer should not be that God would return to America and bless it, but rather that America would return to God and be blessed.

This is our prayer:

"Our Father's God, to Thee

Author of Liberty,

To Thee we sing:

Long may our land be bright

With freedom's holy light

Protect us by Thy might, Great God, our King!"

We are a nation under God

founded on the principle of truth

That all of us are equal, born with a sovreign right

to live within our laws the way we should.

Let freedom ring, let us dream our dreams

and show a world that's lost in darkness there is light

For God is on this land, hope always is at hand

Come join and sing: let freedom ring!"

We each can worship as we please

and teach our children right from wrong

For we all possess the privelege to stand up, unafraid

To share the sacred faith that makes us strong.

Let freedom ring, let us dream our dreams

and show a world that's lost in darkness there is light

For God shines on this land, hope always is at hand

Come join and sing: let freedom ring!

Our father's God, to Thee

Author of liberty

to Thee we sing!

Long may our land be bright

with freedom's holy light

Protect us by Thy might

Great God, our King.

...--Alli

2002-09-04T09:48:00.000-07:00

Oh, and a huge vent: This morning, Kels and I are walking back to our apartment and I notice one of Izzy's play sandals on the grass near our house. I pick it up and head for the sandbox, thinking that my best odds for finding the other one are in there.

I don't find her other shoe, but I find plenty else: one of Kelsey's favorite bowls, a good Tupperware drinking cup that looked like the kind we use, and my Pampered Chef hugely expensive wet/dry measuring cup. All of them hugely scratched up from the sand, and covered in dry mud. I am just furious. Apparently while I was at Choir rehearsal last night, apparently Elizabeth took full advantage of my absence and snowed over the Respite worker.

AAAARRRRGGGGHHHHHH I have told her a hundred times that stuff like that can't go out to the sandbox because it would scratch up the plastic and ruin whatever they took out there. And it's not like I can afford to replace my favorite measuring cup right now, YK?

...--Alli

2002-09-04T09:32:00.000-07:00

Elizabeth loves going to school, the social life there, and staying all day. Her classwork, however, she reports as "boring, Mom. Really, really boring." Going to the library with her class once a week is the highlight of her week.

I have to say, the stuff she's been bringing home has been alarmingly boring IMO. This same girl, who was thumbing through Sarah's 6th grade science textbook and easily reading down the page, is bringing home stories like, "Cat sat. Cat sat sat sat. Cat sat on the mat." She says they really don't do any math to speak of, either.

I gave them about a week and then called to talk with her teacher. I was hoping that the teacher was just trying to evaluate the kids to see where they were at, and that some of her kids were low in skills. Turns out I was right on both counts. She knew exactly why I was calling and was very eager to assure me that she knew very well that Elizabeth wasn't being challenged at all right now. She also said that she had some kids in her class this year who actually could not identify all their letters, let alone read a word, so she was getting their needs met now but she fully intended to put a program in place for Izzy where she breaks out for math, and for reading, and gets extra stuff to do that will keep her challenged and busy and happy.

She also said that Elizabeth was "easily the brightest child in [my] class this year", which did my Mommy ego lots of good LOL

I'm glad she's on top of it and am hoping she gets around to "walking the walk" very soon. SEP's are around the corner so we'll address it then as well.

...--Alli

2002-09-04T09:25:00.000-07:00

Holy Hannah, has it really been that long since I've managed to make it here and Blog? Sorry about that, life has just been extra hectic around here, extra doc appts for Mom thrown in with the usual grundle for Kelsey and Elizabeth's therapy stuff. Sorry to have been so silent.

Kels is doing a bit better with her rages, they are less frequent and most of the time she is redirect-able now. We are not making any headway with impulse control or activity level though-- two big concerns for a little girl who starts school next week, and also for those of us struggling to care for her and meet her needs the other 20 hours of the day, KWIM?

So, we came home from our monthly visit with the Neuro-Behavioral Clinic with orders to once again mess with meds in an attempt to help calm her and allow her to be still and focused enough to accomplish things in therapy and in school. I can't argue that activity level, mood stabalization and impulse control are still huge problems for her, though, so we're reluctantly climbing back on the roller coaster and futzing again.

...--Alli

2002-08-26T12:49:00.000-07:00

Oh gosh, how could I have forgotten to tell you our big news?! Elizabeth's top-right front tooth finally came out on Saturday!! I'm mourning the loss of the digi camera even more = (

Luckily, it was right after we'd gotten back from the zoo and Mynette was still there, so she took a pic for me with her film camera and once I get a copy I'll scan it in for you.

...--Alli

2002-08-26T12:47:00.000-07:00

I've been madly playing with meds, but from the improvements we're seeing I don't think that the Neuro Behavioral Clinic will be too mad at me once I confess what I've done (it's that old saying, "sometimes it's easier to ask for forgiveness that permission" KWIM?)

Kelsey is doing much better on the lower dose of Trileptal and I'm not inclinced to push her any higher. This particular drug is not a "draw blood and check for levels" type of med, so I'm hoping they won't have a fit that she's on a low dose and perhaps (in their thinking anyway) not "in theraputic range".

The other change I made was to her Seroquel. I didn't change her total daily volume, but I shuffled the numbers a bit. She used to get 50mg at 8AM, a prn dose of 25mg at 2PM, and an evening dose of 100 mgs at 8PM. Now she's still getting the 50mg QAM, but her 2PM dose is now 100 mgs and her evening dose is the other 25mg, which has gone from a PRN to a daily thing. She's coping much, MUCH better in the afternoons and overall doing really well.

We're mostly back in "mellow mode"-- so much that people are starting to ask me what I've changed because the difference in her is so apparent. Overall things are much better, with one disturbing exception: she's still in major head banging mode.

On Saturday, she was holding my hand and started to use MY hand to hit herself with, and we're still dealing with two black eyes and a bruised up forehead. I don't know what's up with that, unless we now have a shunt problem from her fall last Friday. If that doesn't improve significantly over the next couple of days, then I'll take her up and we'll run the shunt through all its paces.

...--Alli

2002-08-23T17:04:00.000-07:00

On a domestic note, I did make some progress today. I folded three clothes of clean laundry and got all the ironing done. Then I scrubbed both bathrooms and all four sinks along with their respective counters, cleaned out the drains and the sinks and got the floors swept and mopped.

When Izzy got home from school we headed straight upstairs and tore apart her dresser. We got all her summer clothes out, assesed what would fit Kels this year, next summer, and what would fit her next summer, and what had to go to the local Thrift store. I also got Kelsey's closet cleaned out from all the dresses and things that were too small for her. (I'd done Kelsey's dresser the day before)

(Note to Ian and Myn: I have a boatload an a half of clothes for you for TJ- three boxes and a garbage bag)

I also got the toilets and bathrub scrubbed out, so I'm thinking my reward tonight is going to be a nice, long, hot soak in the tub to relax and ease all the muscles I pulled today getting everything done.

...--Alli

2002-08-23T16:59:00.000-07:00

Things here continue to improve a bit each day. There's usually a bump or two in the day, with an accompianing meltdown of one size or another, but in retrospect we can pin most of them on need of a nap or hungry/thirstyness. I'm still giving her the very low dose of Trileptal, and hopeully most of the extra is getting out of her system by now.

We had an 'incident' here today. I was sitting on the couch in the living room talking with our Physical Therapist about some things as he prepared to leave and go to his next kid on the schedule, and her respite worker was in the kitchen getting some lunch ready for Kels. Kelsey was sitting in a dining room chair, buckled in at the waist but a bit away from the table. She wasn't agitated or upset or anything, but put both feet up to the edge of the table and pushed with all her might.

WHAM! I felt the thud through the floor with my feet in the next room. She landed so hard she popped out 3 of the spindles on the back of the chair and fell straight onto the back-right part of her head. Her VP shunt sits in the right ventricle, a few inches towards the front. Kels was crying, I mean really, really crying so hard that she had trouble catching her breath. Because of the third and fifth Cranial nerve palsies, her nuero exam is worthless at a time like this. Her one eye is sewn shut at the moment, but even if you could see if to compare, both pupils have been fixed and dialated for about two and a half years now.

There was no blood or CSF from any facial orafice, she didn't loose conciousness, and she was (although horribly upset) alert and appropriate, not "altered" in any way. We got her calmed eventually. There's no use checking for a bump or a goose-egg, at this point that's all Kelsey's head IS-- a bunch of bumps and strange shaped protrusions.

The proximity of the bump to her shunt made me nervous, so I called Pediactric Neurosurg for a phone consult. The nurse wasn't in , but the secretary carefully took down all the info and said she would make sure the resident on call got it and called me back, but that he was downstairs dealing with a Trauma at the moment. I settled back to wait.

A few hours later, I get a return call.

Resident: "Hello, Ms. Robertson? Hi, I'm the doc on call and I got your message about your daughter Kelsey."

Me: "Great, thanks for returning my call. Do you think we need to be worried about her shunt having been jolted out of the ventricle because of close proximity to her shunt?"

Resident: "Weeelllll, that does happen sometimes, but then sometimes it doesn't. So my reccomendation to you is to watch her closely and if she shows any sign of shunt failure or malfunction, then bring her on in."

Well, golly gee, Wowzers!!! I never, ever would have thought to do that on my own, what a helpful young man-- and clearly very wise. (For this we send them to medical school??)

So, we're on high alert status here, but so far no vomiting, she's not altered, and she woke easily from her nap this afternoon, all good signs. It'll be a couple of days before I can say with confidence that she's okay.

...--Alli

2002-08-20T14:59:00.000-07:00

It's a slightly better day today, slightly but undeniably so. Last night I held her Trilipetal, didn't dose her at all, and this morning I cut back to the very beginning dose of it. The result seems to be a much happier child, alibiet a very active one. She's out with Respite now and I've been cleaning. I should be still cleaning, but here I sit instead, talking to all of you...

I watched the most incredible movie this afternoon, a friend rented it and let me watch it before she returned it tonight back to the store. I Am Sam. Holy Hannah, I bawled like a baby but loved every minute. Grab two boxes of tissue and rent this movie-- as soon as you can.

...--Alli

2002-08-18T13:15:00.000-07:00

::sigh:: anyone know the name of a good priest with experience in exorcisms? Is it 8PM yet?

...--Alli

2002-08-17T18:03:00.000-07:00

Today, at least, a bit of relief from Excorsist baby. Kels had a really nice afternoon with the Respite worker!! She's more on the mellow side now than I've seen her in days, but not the calm little angel that the Respite working described to me when I arrived home from sneaking in some movie time with Mr. T.

Can I just tell you how sweet and understanding this guy is? Last week this almost 40 year old woman had an 8PM curfew (our Respite was leaving and I had to be home) and he didn't even blink. Today, after taking out travel time to and from his house, we had slightly less than 2 hours to start exploring his considerable DVD collection. Once again undaunted, he came up with a plan to watch "Lord of the Rings" in parts to accomidate my respite schedule. Okay, at this rate it's going to take us about six weeks to get through the movie, but that's okay with me. He's proving to be a terrific and supportive friend, and it's so nice to get out and leave my Mommy-ness at home for a bit. Thanks, Mr. T!

This upcoming week marks Elizabeth's start of first grade coming up on Wednesday, big day! She has an ear infection, we went to the doc yesterday and came home with the familiar pink liquid bottle. At least we caught it early enough that the antibiotics should have a good hold on the infection by Wednesday.

Off to snuggle with Kels a bit before evening meds and bedtime.

...--Alli

2002-08-15T15:39:00.000-07:00

Kelsey has been the baby from "The Excorcist" all day, I swear I saw her sweet little head leave her shoulders and spin around at least once or twice. Add to that the fact that she had a Dentist appointment today (so that she could get her form filled out for "HeadStart") That would be fun even on a good day, but today was about as bad as it gets. It took five adults to hold her still enough for the exam = ( Good news, nothing major they need to fix right now, and no one was seriously bitten. Hopefully the afternoon will be brighter after a nap.

My first big coup on EBay was to purchase a carpet shampooer for my Kirby vacuum. I used to have one, but lent it out a couple of years ago and it came back broken, so we've done without one. Our carpets here have been progressively more grotty during the 18 months we've lived here, and although I tried to keep up with my trusty spray bottle of amonia/water spray (the best thing for spots, really!! Try it.) it got beyond my ability to fix months and months ago. The shampooer kit sells for over 200 dollars, and I got this one on EBay for about 45. Yay, me!! After much anxious waiting, it arrived this morning. We found the box when we got home from the dentist appt about noon. It's 4:30 now and I've just finished shampooing all the carpet downstairs. What a world of difference!! I'm so, so happy to have that tool back in my cleaning arsenal!

We're keeping a neighbor's daughter over the weekend, and I promised the two older girls that if they would help me pick up so that I could shampoo faster and then clean the kitchen by unloading/loading the dishwasher that I would reward them by making a cake this afternoon. They're in there now, working away. I'm sitting in here, waiting for my stories to arrive so I can get started writing. I think I'll go start a load of laundry and then come back and check again. My goal is to get the cleaning and my stories done early enough that I can treat myself to a hot soak in the tub tonight before bed = )

...--Alli

2002-08-14T07:42:00.001-07:00

Oh, comments have disappeared for the moment, I'm hoping the site is just down for maintenance or something. I'm not going to panic until they've been gone for several hours.

...--Alli

2002-08-14T07:42:00.000-07:00

Good morning! Just had to take a minute and tell you how incredibly proud I am of Izzy this morning. She woke up, heard her sister asking to be let out of her vail bed, unzipped her and took her downstairs. Then, she fed her pretzels (one of Kelsey's favorite things to eat) and brought her out to the livingroom, where she put on a Veggie Tales video and they both sat down and watched it together. That's how Sarah found them when she woke up this morning. I am so, SO impressed that she would do such a thing without being asked-- and do it so well! I know there'll still be days when I'll be tempted to sell her for a nickle, but my little girl is really growing up!!

Today is a big day at our house, in a few hours we're off to see who her first grade teacher and her classmates will be.

...--Alli

2002-08-13T22:33:00.000-07:00

Okay, after I blogged earlier today I got this nice email notice from the Change Detection folks telling me that they had detected a change in my webpage and sent out notification. "How very cool," I thought to myself. I looked again at the text of the message. They delivered the notification to "one (1) registered user". BHAHAHahahaaa!! I don't know who it is, but I want to thank the one person that ran and signed up for email updates. To the rest of you: see? Someone else got to read it before you... sign up already!!

...--Alli

2002-08-13T13:08:00.000-07:00

My good friends at ATT Broadband decided to abruptly suspend my internet service yesterday afternoon, much to my great dismay. As you likely know, I work by writing for an Internet website, and they pay me by the story for the things I write for them; therfore, if I can't log on and read my leads, I can't write the story and we don't get paid. See the problem? I've been frantic about it all day yesterday, trying everything a billion times to no avail. I finally wound up at a very sweet neighbor's house with a dialup connection and AOHell as her IP, trying to convince her printer to pretty please print out my stories... it was awful, and it was after 1AM that I finally got to bed.

This afternoon I finally manage to make it to a live person by calling the cable TV company and getting them to transfer me over internally (all I could get was a busy signal). They research aned inform me that my account's been suspended, but for the life of them they can't figure out why. Everything checks out perfectly. Finally, I get to a second-tier support person who can un-suspend me and get me back online, after she checks everything and still can't figure out why the heck that happened.

At any rate, I'm back, and if you sent me any email to my attbi account in the last couple of days, it bounced back to you because I didn't exsist on the server. You may email the new, reincarnated version of myself now and I promise to get it and reply.

...--Alli

2002-08-11T14:59:00.000-07:00

I'm trying something new here... (okay, okay I actually stole it from Tryan) this seems like a really handy tool to add to the page. If you sign up over on the left-hand side bar, the nice folks at Change Detection will email you and let you know when I've blogged and there are changes to this page. Try it!

...--Alli

2002-08-11T12:57:00.000-07:00

Elizabeth's still getting over her virus, but we're making progress. I'm glad that she's doing this before school starts, and not afterwards. This coming Wednesday we finally get to go down to the school and find out what her teacher assignment is for the coming year. (It's a big, big day around here-- she's been stressing about this all summer) I'm really hoping a few of her favorite friends from Kindy will wind up in her first grade class this year.

Kels is doing... okay. I doubled her morning Trileptal dose on Thursday, so in the next few days we should see if that was a good thing or not-- it takes a couple of days to get her level up to the new dose. She had to leave Church early again today, but we'll keep trying. Respite is such a God-send in many areas of our lives, but in Church I especially appreciate them. Being able to feed my spiritual side after two and a half years is such a huge blessing to me. They allow me to step outside my 24x7 role of mom/caregiver and discover that there's actually someone else who lives inside me, too. Turns out there's a woman in here as well. Who knew, eh?

She got a chance to come out and play yesterday... for the first time in almost 17 years I went out on a date last night = ) Because of his understandable terror at being introduced to several hundred of my closest friends on the blog, I'm going to just call him "Mr. T" for now. I got to leisurely browse a bookstore and enjoy a grown-up meal, all while talking in complete sentences to a charming and funny guy. Yay, me! He was a perfect gentleman, and a perfect gentle re-introduction into the wide, wacky world of dating. Thanks, Mr. T, I had a wonderful time.

It's a bit scary, a lot exhilarating, and a whole lot of fun.

...--Alli

2002-08-09T18:15:00.000-07:00

Elizabeth seems to be doing a bit better by the day, I'm keeping up with symptoms and she's as confortable as I can make her. We went to the Ped to make sure it wasn't strep-- it wasn't. Just a nasty viral thing we'll have to ride out. At my request, in addition to Elizabeth's sudafed, we also left with Liquid Motrin and some Phenergan suppositories for Kels, because if she decides to get it from her sister then it won't be pretty. If she holds true to form, she'll take about twice as long to get over than her sister did, and have the worst symptoms. It's just slim pickin's in that battered, sweet immune system by now, KWIM?

The kid's dad began a new trend today. I always suspected it would start eventually, but apparently I (once again) gave him way too much credit. He didn't show up for his time with the kids today. Just... didn't show. Left two kids standing at the window for an hour and a half who just couldn't wait for him to come, never told me he wasn't coming (so they were really late getting any dinner) and left ME to be the bad guy and break it to them that he wasn't coming. Peh.

...--Alli

2002-08-07T23:13:00.000-07:00

Elizabeth's sick, she's complaining of a really sore throat and headache and is spiking high fevers. She's been hovering around 104 on and off since this afternoon. Kels had an absolutely hellish day today, I'm wondering if she's getting ready to get what her sister has and is grumpy because she isn't feeling well? I'm off to put Elizabeth into another cool bath and then snuggle the stuffing out of her.

...--Alli

2002-08-07T09:40:00.000-07:00

gonna republish and see if it helps... I'm getting reports that lots of you can't get the blog to load. It comes up great for me...

...--Alli

2002-08-06T22:19:00.000-07:00

Did I forget to tell you that on Saturday morning, while I was in the shower, Kelsey broke my glasses? Bit off both nose-pieces, twisted the frame up but-good, and then handed them to me after I got out of the shower saying helpfully, "here, Mom. I didn't break this." I had to ressurect my contact lenses to be able to drive to the mall to get my glasses fixed! Luckily, LensCrafter knows me well because I come in on a regular basis to get my frame straightend out after Kelsey bonks me in the face or head. (sometimes accidentally... sometimes not) Bless their hearts, they were able to fix me up and get new nose pieces on and get me on my way. Good thing, too, I had a hot date at the movies. My dear friend Kim and I went to see Signs. I loved it. How could I not, it had Mel!! The plot was good too, though, really. You should go see it if you get a chance.

Today I did another "me" thing, I went to the Jordan River Temple this afternoon. I haven't been able to attend the temple since before Kelsey's accident; my life just hasn't allowed it. I'm so thrilled that at last my life is getting managable enough and our support system big enough that I can sneak in a temple session every now and then. I really have missed it more than I can express for me. Kinda interesting tidbit, that is the temple I got married in, and it's my first time being able to attend the temple since my divorce.

Sunday was indeed a better afternoon-- Kels slept just over two hours-- a marathon nap for her!! Maybe she was just really tired? Monday got really bumpy in places, interspersed with nice stuff. This morning was horrid, but we wound up putting her back down for an early nap and that seemed to have helped.

Kelsey LOVES scrambled eggs, and requested some for breakfast this morning. I scrambled up and cooked three eggs for her (yes, three for my little piggy) and she wolfed them down and then demanded more. I'm standing at the stove making her three more eggs, she says to me, "Mom, I pooped." I turned and looked, and Holy Hannah, had she ever. She'd blown out of her diaper on one side, filled up a portion of her seat and then, for the first time in her entire life, she fingerpainted with it. She was covered. I sent Sarah upstairs to start the bath and cleaned her up best I could with wipes, dodging kicks and punches the whole time. She was really, really agitated. Finally I got her to a point where I dared unbuckle her and let her off the char. I cleaned her up some more upstairs and then we put her in the tub for a loooong bath. I looked at her in there and thought what a shame it was that I couldn't just add some bleach to her bathwater. I shudder to think of the germs she exposed herself to. It took me another 20 minutes to clean up the kitchen, Lysol down the chair she was in and spray judiciously with some room deoderizer that helped to decrease the smell. It was pretty icky. I mean, there are diapers and then there are diapers, KWIM?

She woke up in a better mood and then was able to mostly maintain until her beloved Dave arrived and whisked her off to go swimming while I was at the Temple.

It's way late, gonna sign off for now and check back in laters. {{{{hugs}}}}

...--Alli

2002-08-04T12:50:00.000-07:00

We actually had a really nice day yesterday! I was SO grateful; heaven only knows we were due for one. Friday was definitely less bad than Thursday, and Saturday was delightful, so I had high hopes for today. Unfortunately, Dave had to bring her home early from Church-- she had a really hard time and was very self abusive and pretty aggresive to poor Dave as well. She's having a huge nap at the moment, so I'm hopeful that maybe it was fatigue and we'll have a better rest-of-the-day.

...--Alli

2002-08-03T08:07:00.000-07:00

Okay, which do you want first, the good news or the bad news?

I know, I hate questions like that too.

Okay, the good news first. Yesterday was a slightly better day. Hallelujah!! That is not to say that it was necessarily good, but noticeably less bad than the new norm around here. I'll take it where I can get it at this point. I'm praying that it's the higher dose of med kicking in and actually beginning to help. Hopefully today will be better yet.

Kelsey adores her new "princess big girl bed" (that's code-speak for her vail bed which finally arrived earlier this week) and mom adores it, too. There are mornings now that I actually wake up alone in my own bed now. It's surreal. It's delicious. I'm actually going to have to go back to setting an alarm in the mornings.

The bad news? Could we all have a respectful moment of silence, please? My trusty-rusty digi cam, the one I got right after Kelsey was born, the one I documented our entire first hospital stay with, the one we loved and used so well... gave up the ghost and died yesterday. Major sadness.

Did I mention that when they fixed the brakes on the car that they found a problem with the steering wheel? My linkage is slipping or something. They said not to drive it more than I have to and that I need to get it fixed right away. It's going back in to the doctor this coming Thursday. *sigh*

...--Alli

2002-08-01T19:34:00.000-07:00

Just me, checking in from the hellhouse. Kelsey has been just off the charts the last several days, scarily so. She's doing her darndest to reopen all her facial wounds and working at making new ones. Her lip is her current favorite place to bloody at the moment, and the forehead wound that I finally got covered up is now a series of small knicks and scratches. I hate, hate this part. If we don't manage to do something that helps fairly quickly, it's only a matter of time before she does something big and we wind up back InPatient.

We doubled her evening dose of Trilepital starting last night, hopefully that will help to push her into a theraputic range and we'll get to see if it will actually help. We're being as hypervigilant as we possibly can and being really proactive with the Gentomycin cream on anything that looks open or irritated on her face, racing to keep the healing one step ahead of the hurting. We're all sporting a new crop of bruises and scratches curteousy of Kels, and she's spending about half the day in time out anymore. It's been oodles of fun. Not. We're really revving up all the sensory based stuff, because that seems to be the only thing that calms her these days.

Elizabeth is coping surprisingly well, thank goodness. I'm trying really hard to make time for her and not allow her to be pushed to the sidelines in all the chaos. She's doing some nice work in individual therapy, I'm really proud of her.

What else... oh, I think I've gotten her the basics for back to school-- special thanks to my SIL who works at Wal-Mart and could help out with her insider knowledge of product and pricing and had friends to put the backpack on hold in another store until she could go get it. I'm not buying more than the backpack, a package of pencils, a sharpener, an eraser very basic stuff until she starts and I know exactly what she needs.

Got the brakes on the car fixed today, cost about 150 bucks. The TV repair earlier this month was about 180. Stories are still s_l_o_w, financial stress is pretty high here right now.

Oh, and I made another very scary discovery today. It turns out that EBay accepts personal checks, so I can shop there afterall. I found this computer program I've been scouring the state for on there. Remember Schoolhouse Rock?? They have a bunch of really cool computer programs out now.

Conjunction Junction, what's...your...function....

...--Alli

2002-07-28T19:28:00.000-07:00

Kels has been battling what I am ferverently hoping is a viral thing, she's been onery-er than snot and spiking fevers on and off. She seems to be getting over it a bit more each day, but she's been a serious Velcro-Baby the past several days, and truthfully I haven't minded. She's so busy that I treasure those snuggle-me 24x7 times because already I don't always get my quota. I'm sorry she's been feeling sick, don't miss understand me. Just grateful for some extra snuggle time. It's hard for me to remember sometimes that even though she has these 27 possible things that can go wrong with her at any time, she's also still allowed to get all the normal kid stuff too-- colds, flu's, viruses etc. I'm grateful that this turned out to be viral, in the beginning it looked a lot like a shunt failure. I'll take the flu over THAT any day!

My brother taught me how to set up and manage profiles in Windows XP over the weekend, so Elizabeth came home from her dad's with her own Powerpuff Girl-themed profile and customized desktop, which she thought was da-bomb. Then she opened up Outlook Express and found that I had put her email account in her profile, so she can now open her Outlook and check her very own mail (she's had an email addy for a while, it's just not shared very often-- I'm really cautious about who it goes out to and monitor it carefully to check what comes in before she sees it). She was SO impressed with her big, bad self that she couldn't stand it. It's been fun, actually. I sent her a mail message from my account to hers, and she was tickled to have recieved an email from me LOL. I've decided it might be a very nice way to catch her doing something good, IYKWIM. I emailed her again this afternoon thanking her for remembering to call me when she got inside a neighbor's house to play so that I would know where she was and telling her how proud I was of her when she remembered to obey the rules. Maybe this will be a good thing for us and help us communicate better?

I had a mild heart attack today, I realized that Elizabeth starts school the third week of August and that date is fast approaching. Aaack!! School clothes!! New Backpack!! School supplies!! ::running screaming from Blog:::

...--Alli

2002-07-23T15:41:00.000-07:00

psssst.... look who's back!! It's AMY = )

...--Alli

2002-07-23T11:53:00.000-07:00

Things have been hectic here, Kels is still pretty wild. She seems a bit less frustrated, though, and she's hitting herself less-- good signs. She's still waking up at dark-o'thirty every morning, but the dose of Trilepetal is so small that I haven't given up hope that she might mellow out on that point, too.

Elizabeth scared the bejesus out of me yesterday, left without telling anyone where she was going and was missing for 90 minutes before we found her. We scoured the whole building, pounded on doors across the street where she likes to go play, even went up and down the block, nothing. I literally had the phone in my hand to call the police when she sauntered in. It was one of those "oh, thank-goodness-you're-okay-now-come-closer-so-I-can-kill-you" moments for me. She's hating life because she's grounded indefinitely for now, and she isn't allowed to go across the street to those houses to play anymore (which is doubly sad because they're sweet kids that come from a very strong Greek Orthodox family and the kids don't get to leave the yard to play often)

I'm excited for my choir performance tomorow morning in the SL Tabernacle. We had a Saturday rehearsal there and the accoustics are just wild for those who perform there!! I just wish the concert was later in the day-- instead of a sunrise service AT sunrise, couldn't we all just fondly reminice about it a few hours later?

...--Alli

2002-07-20T06:58:00.000-07:00

Oh, gotta share one more thing and then I gotta get going-- I have a Saturday morning rehearsal today; our next concert is coming up on Wednesday.

Yesterday morning, I stumbled downstairs to get some clean clothes out of the dryer before I showered. I had Kelsey in tow. I'm over at the dryer getting the clothes out and into the basket so I can bring them upstairs when I hear Kelsey ask, "Mom? Is it okay I have some Sprite?" (we had gotten Papa Murphy's pizza the night before and done the family deal, which came with a liter of pop and some cookie dough) "No, doll, " I answer her. "Wait until after Mommy has her shower."

Just then, the phone rang. The noise seemed extra loud because the house was so quiet. Kelsey levitated a good foot off the ground in a HUGE startle reflex, then tucked the liter bottle of Sprite under her arm like a football and tore out of the kitchen around the corner as fast as her sweet legs would allow her to, and dove into the couch as if it were home base. From her expression I believe she thought she had triggered some sort of secret Sprite alarm or something. It looked like the toddler version of "Indiana Jones and the Temple of Doom" where he takes the treasure off the pedestal and that huge ball starts chasing him out of the cave.

I was laughing so hard I could barely answer the phone.

...--Alli

2002-07-20T06:52:00.000-07:00

Okay, where to start... Kels isn't sleeping well. She's waking up early-early; two days ago 5AM, yesterday 3AM today 5AM (which somehow after the three AM didn't seem as bad LOL) Factor in me finally getting to bed betweeh 11:30 and 1:30 AM and you get the bleary picture. With that little sleep for her, you'd think she'd at least be napping well, but you'd be wrong. Yesterday, she didn't nap AT ALL, just raced around from 3AM until 8PM. It's like watching a 45 RPM record be played at 72 RPMs.

Besides turning into a miniature of the Tazmanian Devil, she's been incredibly agitated and abusive. Bruises, scabs and scratches are sprouting up on everyone who works with her, as well as lots of sore spots from being elbowed (I swear, the kid has the boniest elbows in America) or being the recipient of a projectile of some sort. I'm at that level just below official panic. The Neuro Behavioral Clinic is very concerened and officially alarmed. We're going to add another med and see if we can stop the train here. Trileptal is the stuff we're hoping will be the magic bullet. We're starting off very slowly and building up, so it will be a week or so before we can tell what it does for her for sure. She had her first dose last night.

It pays to go to the same pharmacy for all your stuff. It's an understatement to say that they know us well there LOL (actually, we do get a few things at the hospital pharmacy, where we are also known on sight, but that's specialized stuff you can't get anywhere else KWIM? All the regular stuff we try to keep to our local pharmacy so that if there are any drug interactions then we can catch it before we give it to her and make her worse instead of better.) Yesterday, I'm picking up her new stuff and the pharmacist comes up to the counter to give me the scoop, since it's new for us.

"Gonna try Trileptal, eh?" he asks.

"Yep," I reply. "The NeuroBehavioral Clinic is hoping that a little "vitamin 'T' may do the trick. I sure hope they're right. What are the side effects I need to look for on this one?"

He scans down the fact sheet that comes with the med and mentions a few things, keeps scanning and then pauses to announce

"Well, this could be a problem. She's not supposed to drink any alcohol while she's taking this," with a perfectly straight face.

"Oh, no! " I reply in mock horror. "That's going to be hard for her. I suppose next you'll be telling me she can't operate heavy machinery, either??"

He looks at me somberly and shakes his head sadly. "Nope, you're going to have to stop letting her dive the tractor, I'm afraid."

...--Alli

2002-07-18T21:56:00.000-07:00

I just love to write, that's no surprise to anyone here, I think. I am in love with words, the way they can be combined in exactly the right way to say just what I want to express; every nuance and feeling that I want the reader to feel I can put in all the right places. Here's a secret for you: In high school, all the other girls carried around tubes of lipstick and makeup so they could touch-up whatever needed touching during the school day. Know what I carried in my purse? A thesaurus LOL. It's true, I swear!! I just loved being able to find exactly the right word for what I wanted to say. Also in there would have been whatever book I was devouring at the time.

That love affair continues today, and I relate deeply to how much of one's self you pour into something that you write that comes from your heart. I would never want to deprive anyone of proper credit for something they had written. So, in that light, let me correct myself on the quote I shared with you a few days ago. It was not originally written by Nelson Mandela as my source believed and told me, but rather by an amazing lady named Marianne Williamson. Here is the quote properly credited. Take notice of the "note" down at the bottom, which mentions that the quote is often mistakenly attributed to Nelson Mandela.

Thanks to Pam L. for helping me straighten that out!! And my apologies to Ms. Williamson.

...--Alli

2002-07-18T21:39:00.000-07:00

Rough times over here, Kels is having a HUGE spike in agitation/agressive/abusive behavior = (

She's hitting her head again, right in all the old, favorite spots. Being downright malicious to her caregivers and other innocent bystanders. Large portions of her day in Time Out, very difficult to soothe. Sleep schedule's off, moods are extremely erratic and extreme, and if Kelsey ain't happy ain't nobody happy at our house, so it's being a delightful experience for everyone.

Today I took her up to the hospital and we ran everything shunt-related we could think of. Full head xrays, valve setting xray, shunt series, CT scan, the works. Every single part of it checked out just fine, much to my relief. So now we know a huge thing that the problem is NOT. The trick is going to be finding out what it IS. I've had her to the Ped in the last week, she's fine physically, it's not the shunt, so I think the only big variable we have left is medication. *sigh* We have an appt Friday with the Neuro Behaivoral Clinic, we'll lay it all on the line there and hopefully leave with some guidance and answers.

This is a really scary time for me as well as those who work closely with her and love her dearly. This is the "danger zone". She's really going at her head and we're all trying to be hypervigilant, but she's so quick... I'm afraid if we don't get a handle on this soon then history will repeat itself and we'll wind up InPatient because she'll do something big.

Thanks for all your hugs and prayers, I know they are offered up on a daily basis and I already know that just about all of you out there know the drill and can assume "panic positions" in a heartbeat!! So thanks in advance for assuming the position on our behalf. We'll weather this one eventually, it seems we always do, but I just wish we wouldn't get so much practise, YK?

...--Alli

2002-07-16T12:24:00.000-07:00

I came across this and had to share...

Our deepest fear is not that we are inadequate.
Our deepest fear is that we are powerful beyond measure.
It is our Light, not our Darkness, that most frightens us.
We ask ourselves, who am I to be brilliant, gorgeous, talented, fabulous?
Actually, who are you not to be?
You are a child of God.
Your playing small does not serve the world.
There is nothing enlightening about shrinking so that other people won't feel insecure around you.
We are born to make manifest the glory of God that is within us.
It is not just in some of us; it is in everyone.
And as we let our own Light shine, we unconsciously give other people the permission to do the same.
As we are liberated from our own fear, our presence automatically liberates others.

Nelson Mandela, 1994 Inaugrural Speech

2002-07-16T12:21:00.000-07:00

Kels is going through a rough patch lately, increasingly agitated and abusive to herself and to others. To try and troubleshoot, last Thurs/Fr morning I held her Depakeene and didn't dose her. We were rewarded with some really nice, more mellow time. Unfortunately, by Friday afternoon we were starting to see less focus, a harder time obeying, and so Friday night I dosed her. Saturday I dosed her as well, and once more, while her level was still below the goal then she was really mellow, but by Sunday mid-day we were back to grumpy and agitated. I'm thinking she needs a lower level than the Neuro Behavioral Clinic thinks. I'm going to talk to them about it at our appt on Friday. In the meantime, I'm going to cut her dose in half and see what that does for her disposition.

As of today, she's even back to hitting herself, something we haven't seen in quite a while (most of her agression has been towards her caregiver at the moment she spikes).

She had a good day at school today, though. Maybe she just misses school. Maybe the moon is in the wrong phase. Perhaps the breeze is blowing the wrong way? argh.

...--Alli

2002-07-13T08:26:00.000-07:00

Stolen shamelessly from Laura:

Google! DayPop! This is my blogchalk: English, United States, Utah, South Salt Lake, Alli, Female, 36-40!

Look, mom... I'm listed in blockchalk!

...--Alli

2002-07-12T18:40:00.000-07:00

On a MUCH brighter note, Elizabeth did some extra chores for me this morning and earned as a reward a chance for us to spend the afternoon swimming at a local pool. We had a BLAST, and I'm sure the people I traumatized by appearing before them in a bathing suit will be just fine after some therapy.

...--Alli

2002-07-12T18:39:00.000-07:00

Today before Elizabeth left with her Dad for the weekend, he pulled her upstairs because he had to "talk to her privately". When she came downstairs, I asked if everything was okay. Elizabeth didn't even take her eyes off the computer screen and the game she was playing, but she answered very casually, "Oh, yeah. He just wanted to ask me where my green sandals were."

Merciful Heaven, how long must we worry about the sacred green sandals from Payless?? Let's start a poll, shall we? How many weeks will this continue until he catches on and drops it? Un_be_liev_able.

...--Alli

2002-07-10T20:25:00.000-07:00

Kels started the day bright and early at 4AM. She had an "off" day today, really grumpy and un-focused-- I'm hoping we can blame the lack of sleep. She only napped for an hour in the morning, none in the afternoon, so.... I am hopeful that tomorrow will be better. Once again, I gotta get down to the TV repair place and put a deposit down for the repair of our downstairs TV. A friend dropped it off for me on Monday while I was at my dress rehearsal {{{{{Sonia}}}}} but they need a deposit before they'll start work. I gotta-gotta do that tomorrow.

We're starting to see some of the spiffy new stuff that I bought with Kelsey's MAG money arrive at the house. Her resusable special-size swim diapers arrived today, along with this belt-thingie that has floats on it that she'll wear around her waist to help her stay upright in the water. What else.... oh, a really cool "rainmaker" toy that she absolutely loves. Some of our other things are on backorder, I hope they arrive soon! Oh, and her whirlpool attachment for the tub came today!! In the hospital the calming effect of their whirlpool bath was amazing for Kesl. I'm hoping it will work the same sort of magic here for us. What do you guys think, am I duty-bound to try it out first and make sure it works okay before using it on Kels? = )

That's about it from here for today, I think. Oh, did I mention that when I found that IP address the report it generated even had the head IT person's name, email address and phone number? The addy is valid, too. I tried it out today.

...--Alli

2002-07-09T22:20:00.000-07:00

Okay, for all of you who were kind enough to ask for an accounting:

The concert last night was an thrilling and wonderful experience. I'd forgotten how exhilarating performing can be! I've never had the opportunity to sing in an official Concert hall, complete with three tiers of balconies and ornate chandeliers hanging gracefully from the ceiling. The hall was just gorgeous and I felt very official to be on stage. The house was completely packed, with the exception of a block of seats in the rear section of the third tier, and the audience was just amazing. They really connected with the choir and could not have been more enthusiastic. This was true not only during the actual performance, but afterwards as well. I waited outside for my ride home (a neighbor dropped me off and then picked me up so that I didn't have to hassle with trying to find parking downtown) the patrons were still leaving the concert hall in droves. It was obvious from my attire that I was a member of the choir, and many of them came up to me and thanked me profusely for the choir's performance and went on and on about how much they enjoyed it. It was really cool!

Modesty aside, we rocked. It was awesome, with very few minor technical glitches and an amazing performance from the Symphony and the Salt Lake Scots, who performed with us on "Highland Cathedral" and did a few songs on their own as well. We got a standing ovation at the end, and I was so "up" from the performance still that I didn't even mind staying up late to get my stories done-- I didn't get to start writing last night until after 10:30, but it didn't matter. It was a great experience = )

We have another concert Friday night that I'm trying to find some Respite for so that I can attend, and then our next performance is on the 24th when we perform at the Sunrise Service in the SLC tabernacle, which promises to be another thrilling experience. Even though we were out late last night because of the performance, there is no rest for the wicked. We had our usual two hour rehearsal tonight, and were handed 5 new pieces to master before our performance on the 24th. We're combining with another choir called The Legacy Choir, and they were at our rehearsal tonight. They were wonderful!! Their conductor is amazing and very demanding-- it reminded me of my choir experience at BYU (Cindy, he conducts exactly like Ron Stahley, I swear! It was freaky!). It was really fun to be driven to a higher level of performance. It was also more of a challenge because we'd never seen any of the peices before, so on top of everything else we were sight-reading the music. It was a very satisfying experience, and I left tired but feeling very good about what I had accomplished.

...--Alli

2002-07-09T11:13:00.000-07:00

We seem to have lost our comments. Very interesting timing, eh? Hopefully the comments people are having some maintenance done and they'll be back soon.

...--Alli

2002-07-08T23:46:00.000-07:00

Gosh, it's amazing what a little dectective work can do. Here's your trivia for the day...

The IP address for our annonymous but repetative flaming-comment lover is 198.252.209.32

Imagine my surprise to find out how easy it was to learn that this IP addy traces back to

Digital Technology, International (NETBLK-DTINT)

1180 N. Mountain Springs Pkwy

Springville, UT 84663

US

By an amazing coincidence, this happens to be the very same place that my ex works at. I don't think he could have left the comment by himself, though... the sentence structure and grammar are too good. Besides, he wouldn't be able to spell "MUNCHHOUSEN BY PROXY SYNDROME" correctly without help, and I seriously doubt he knows what it is. Not that the poster knew, either, since if I had that it would imply that I was causing Kelsey's problems by making her sick so that I could be the hero and cure her, which anyone who knows the circumstances of her current condition would find quite incredulous.

I'm betting on a co-worker who only gets the garbled, quarter truth of Kelsey's condition from my ex and thus has absolutely no clue what they are talking about. Sheesh, you'd think they'd at least have enough common sense to flame me from home and not from their workstation. Hmmm, wonder if the company has a policy on Internet usage on company machines? Maybe they'd appreciate a call letting them know what their employees are doing with their time at work. What do you think?

...--Alli

2002-07-08T11:35:00.000-07:00

It's official... Kelsey and I each came home with antibiotics for a sinus infection at our respective Dr. appts today. I still have to make a pharmacy run and get some black hose for the concert tonight, but my dress is picked up from the place that sewed it and all neatly pressed, and our other morning appts all got done as well. We even dropped off Sarah early for school today at noon instead of two. Kelsey's 12 o'clock therapy changed to a 1:00 this morning when her therapist called and changed the time, so we've got that coming up in the next half hour. Then, while he's here I'll go by the drive through at the bank for cash and pick up the 5 or 6 scripts we have waiting there, then swing by for the hose on the way home. I've got to leave here by about 3:15 to get up to the concert hall for the dress rehearsal, so I have to get everything done in the next three hours. I think we can pull it off, though. I just hope the meds kick in quickly for both of us. I don't know how Kelsey's feeling, but I feel like crap and have a headache the size of New Jersey. I'm off to take some Excedrine Migraine and more sudafed.

...--Alli

2002-07-07T17:13:00.000-07:00

Kelsey's cold continues... it's really trying to settle in her chest. We've tried to take it easier and I've given her psudafed, but we're loosing ground and it's getting worse instead of better, so tomorrow we'll head to the Pediatrician and have her give Kels the once over and make sure it hasn't morphed into anything needing antibiotics yet. She's had this for several weeks now, and I'm starting to suspect it's been too long to be viral. I need to go back through blog entries and see when I first started mentioning the cold and then add three or four days to that.
o
Elizabeth went down to her dad's for the Fourth of July. It's really kind of funny but sad that she gets bored down there and calls me to chat and pass the time. Used to be that she would call me sometimes 15 times in a day, but then her dad got a text pager. Now she just emails me 6 or 7 times a day and then calls me to make sure that I got the email ROFL. She went down there for the weekend, too, so we only got to borrow her back for a day before we had to send her down there again. She returned today and rushed up to me, very worried that I was mad at her about her sandals. Apparently her excuse for a father told her that Mommy was very mad at her about having them. Every time I don't think there's much lower left for him to sink, he amazes me yet again. (how low does that "Scum Scale" go, anyway??!) Purposefully manipulating and worrying a 6 year old about grown-up disagreements and trying to suck them into the middle of things just astounds me with how inappropriate it is, but I guess by now I shouldn't be very surprised.

(Note for anyone reading this who might take offense and feel badly for my ex-spouse. This is my Blog, MY safe place to vent, not his. If he wants to read only nice things about himself, let him start up his own Blog and he can read his own ramblings on there. Be warned, though, you're prolly going to have to hold his hand through getting it set up. More power to ya.)

On Friday morning, we woke up to find that our downstairs television had commited suicide at some point during the night. It was fine when I went to bed on July 4th, but July 5th the sound was working just fine but the picture was black, black, black. Nothing. Nada. Zip. Zilch. Zero. Bupkas. I'm taking it in to a place to try and repair it tomorrow and am praying it's not going to be too much money. I already have to replace the breaks on my car this month (it sounds as if a small family of rabid chipmunks have taken up residence in my hub caps) and stories from Cosmiverse have been much more sparse than I would like, so we're running "lean" this month anyway, KWIM? I have to get something in here for a TV though, the kids will kill each other between no school and no TV over the summer. I have a television set up in my bedroom I could move down, but that would mean while I was working that Dave and Kels would have to camp out in this room while I was trying to work and they were watching videos. Although I adore Kelsey, it's distracting to her to be in the same room as I am working (she constantly wants to come up to me and chat/hug/snuggle etc) and it's distracting for me to have her there as well, KWIM? So for now, we have no television downstairs, which stinks for Kelsey because if I'm writing at the keyboard she can't go upstairs in my bedroom and be okay alone up there, so she's stuck down here, cranky and bored.

This is part of the reason you haven't heard from us in several days. That, along with her declining health and my own fatigue. I have developed the ability to fall asleep during almost anything, and I'm really not sleeping that badly at night that I'm aware of. Maybe I'm restless after I get to sleep, I dunno. The amount of sleep I'm getting is about the same as ever, no significant change there, either. My throat has been sore for weeks now, maybe I'll get them to look at me when they look at Kels tomorrow at the doc's office.

Tomorrow is also my concert, so I have to run around and get my concert uniform picked up and final-fitted at the place that made it for me, get the TV to the repair shop (they're 4-5 days out now, so the longer it takes me to get it down there, the longer until it comes back), go to my regular therapy appt, fit in two therapy sessions for Kels and work us both into the doctor's office. Oh, yeah, need to call Group and let them know Elizabeth's not coming Monday, either (Group time conflicts with my Concert Stuff)

I'll try to check back in soon

...--Alli

2002-07-03T19:42:00.000-07:00

Apparently it's "schedule snafu" week at our house, and I neglected to check the calendar. We arrive at the hospital for the Optho appt and are informed that our appt was actually yesterday at 3:30, not today. My planner insists it's today at 3:30, but... moot point. Here we are, here Kelsey is, there are her eyes that need to be checked... they graciously offer to "fit us in" and so after only a two hour wait, we finally see the doc. Once we finally get to him, he is delighted with what he sees and wants me to keep doing exactly what I'm doing now, says she looks great and her eyes are gorgeous, etc etc. If she remains this mellow he wants to take out the stitches in her right eye this fall and get that eye back open again!! ::crossing all fingers and toes:: she turns 5 this October, so we are really running out of time if she's going to have any vision at all in that eye. Even if all we manage to get back is light/dark and shadows, it will still be a tremendously useful tool-- a "helper" eye that will help her to navigate distance and depth perception much more effectively than she can do now with just the one eye.

We see her plastic surgeon later this month, and if he decides it's time to go in and do the next round of stuff on her face we'll try to combine that with the Optho appt and do them both at the same time. If not, we have an appt with him in early October. Otherwise, we'll try and schedule both procedures for Sept.

Elizabeth is off to her dad's house for the night... this morning I took her to see the very first showing of the new PowerPuff Girls movie. It was very fun to see her have such a great time. I don't get to be "the cool mom" in her eyes very often, so I relished every moment today = ) Tonight she's at a Starzz game with her Uncle Ian, they are doing a "PowerPuff" theme with the game tonight, showing episodes both before the game and during half time, having activities for the kids to do, handing out PPG treat bags, and posters to the first couple of thousand kids that come. Elizabeth was SO excited to go!!

...--Alli

2002-07-02T12:38:00.000-07:00

hmm, comments seem to have dissapeared, along with the archives. Wonder if Blogger is having indigestion.

...--Alli

2002-07-02T11:15:00.000-07:00

Other than what I am still hoping is just a summer cold, Kelsey continues to do really well. She's moody still, but if she feels rotten from her cold that could be par for, KWIM? Elizabeth is pushing the envelope lately, wandering off to friend's houses and then not telling me where she is going so that I have a heart attack while trying to track her down, but other than that is okay. Well, she's not happy about being grounded the rest of the day once I bust her wherever she's hanging out and make her come home and stay there the rest of the day, but I'm hoping that eventually she'll see this consequence as incentive to let me know where she is going before she leaves the house. She has the same nasty summer cold that Kelsey has, except for Elizabeth it sounds more chest-y. She's also had it longer. If they get worse or if they don't start to feel better in a couple of days I'll haul them into the doc's office.

Elizabeth is beyond excited about this coming Wednesday. Thanks to her Uncle Ian she's going on Wednesday to the Starzz basketball game with her cousins. They're having a "Powerpuff Girl night" thang there to celebrate the opening of the movie, with episodes of PPG shown before the game and during intermission, PPG gift bags, and PPG posters for the first couple thousand kids to arrive. She can't wait!!

My car had a slow leak in one of the tires, or else someone let most of the air out of it. We filled it back up with air last Friday night, but today it's starting to sag just a bit again so I know I've got a leak in there somewhere. I called the tire place and they'll gladly fix it for free if I just bring the car down there, so that's on my list for this afternoon.

I inadvertantly double scheduled us for tomorrow (sound familiar, Brooke?) and so we're going to have to miss Group for an eye doc appt for Kelsey instead. I feel badly, we missed her individual therapy appt last week and now this week as well (we have that right before Group on Wednesdays) but he's solid booked until our next appt this coming Wednesday *sigh*. That's the trouble with having such amazing people on our team, they're so good at what they do and so popular that when we need to reschedule something it's almost impossible to get in anytime soon. This eye doc appt is one we only have every two months, and it made it to my month page but somehow not to the day page in my planner. Bad mommy, bad mommy.

I have to call around today and line up Tuesday babysitters for Elizabeth while I go to choir for the month of July, so I'm going to sign off and get busy.

...--Alli

2002-06-29T19:53:00.000-07:00

Elizabeth's best bud Katherine came down with strep, but Elizabeth insists that she's okay and that the occasional cough I hear is just a little cold. I hope she's right, because Kels has the same little cough. We wait it out and see, I guess. They're both acting fine, in fact Kels had a really nice day today.

We got a little crazy at Speech therapy today-- Elizabeth and I had just started making some cupcakes with some rainbow cake mix and Kelsey wanted to dip her finger in the batter as she saw Elizabeth do, so we washed her hands well and let her do just that. The result was very funny and very messy. She clearly had a love/hate relationship with the batter, thought it was cool but struggled with the wet and slimy feel of the batter on her hand. She wouldn't lick it off her fingers but wanted to put her hand back in and swish it around some more instead. When it got to be too much on a sensory level, she would flap her hands to flick of the batter until it was tolerable to her. (Picture a wet dog just out of the bath and you'll have the general idea.) Miss Amy, our intrepid Speech Therapist bravely attempted to hold Kelsey'shands at the wrist and intervene in time to save me from having to hose down the kitchen, and for the most part she was very successful. In fact, apart from a brief mad-dash around the house with Dave shrieking dramatically in front as Kelsey chased him down trying to slime him and the ensuing three way food fight between Dave, Kelsey and Elizabeth it went rather smoothly, I thought.

My first choir concert is coming up soon, and so we had a rare Saturday morning rehearsal today so that we could practise with the orchestra. The bagpipe guy came too, but he's been there before for another rehearsal so that wasn't totally new to us. I've never had the chance to sing with an orchestra before, and it was really fun-- but challenging. Instead of our conductor's undivided attention, we were relegated to looking at his back and getting head nods with back handed cut-off's that could have been mistaken for fly swatting LOL. At the concert, we'll all be facing him and things will be much easier. Today, he was facing the orchestra on the stage while we sat in the audience seats behind him, so you make do with what you have at the moment, KWIM? We wont' actually get to practise in the concert hall until just before the concert. For the moment we're using the auditorium of a local high school, in which the air conditioning has been broken for over a month now. I'm really appreciating the small, flat fan that my friend Sonia brought back as a gift from one of her business trips. It fits in my choir binder and is flat enough to not bulk it up so it won't close. That fan has become very popular LOL it's been used to fan the people on all sides of me (the sweet lady who sits just in front of me has to be in her late eighties) and the young mom who sits next to her brings the most adorable baby boy I've ever seen with her to practise and often when it gets unbearably hot I pass it to her and she fans him to keep him cool. He loves the pretty colors in it.

...--Alli

2002-06-27T14:14:00.000-07:00

I just got the oddest, most wonderful phone call! Our DSPD case worker called and announced that the Central Region Director for DSPD waltzed into her office this morning, plopped down in the chair and announced that she'd received paperwork from the Entitlement Commitee Meeting which said that the decision to fund extra Respite hours for Kels over the summer had been denied. Janet told her that was correct and gave her some insight to the things that were discussed in the meeting. The Director mulled it over for a minute, said, "I just can't agree to that. I know this case, and this family really needs that extra support. I think they should get it. I'm going to overturn their decision and give them the extra Respite hours anyway."

Sure enough, an hour or so later she got the official email telling her that the decision had been reversed and we have the funding for extra respite hours until Kels goes back to school.

Wow, I didn't even know they could do stuff like that. Too cool!!! So that schedule that the RISE guy and I made up this morning for the month of August gets to be thrown out and we can make the one we dreamed of instead. Wow!!

...--Alli

2002-06-27T14:10:00.000-07:00

Elizabeth seems to be making a miraculous recovery as the day wears on, the sun shines and her friends want her to come out and play. Hmmmmmm

Kelsey's mood is better too, so maybe she just missed her best bud Dave, who was off the past two days due to some weird scheduling.

...--Alli

2002-06-27T10:59:00.000-07:00

Kels had a grumpy day yesterday and got more upset than I've seen her since we tried to up her Depakene. She was hitting herself and anyone else she could reach, really agitated. She wasn't that way all the time though, she could also be very sweet, polite and mellow, so maybe moody is a better term for her temperment. I dunno... maybe she's getting ready to be sick? Elizabeth says that her throat hurts "a lot", but she's also clamoring to go outside and play when there's something tempting to do out there... The new neighbors in Unit 7 have strep, and all the kids have been over there playing (well, not so much Elizabeth, but other kids she plays with)

Ugh... I'm just confused all over I guess LOL

More later.

...--Alli

2002-06-26T13:12:00.000-07:00

Sorry that comments were gone for a bit, I was in the middle of updating YACCs comment code and ran out of time before we went off to the zoo. We'd been plotting and planning the trip for like a week now, and things just got away from me. Anyhow, we're home now, the animals survived our trip to the zoo, and everyone's busy cooling off and catching up on lunch. I'll try to add more later.

Comments should be back and working now.

...--Alli

2002-06-25T07:37:00.000-07:00

Yesterday morning while Kels was gone with Respite, I cleaned and scrubbed and washed and folded my heart out. With the help of a neighbor/friend I was able to actually get a handle on the house and feel just about caught up for a couple of brief, shining moments. In the afternoon, I used the time while Elizabeth was in Group to do some grocery shopping and then make phone calls to catalog companies and decide how I want to spend Kelsey's DSPD "Mag" money. We said we'd use it on adaptive recreational equipment and we have to spend it by July 1st, so this week I need to blow 300 bucks on her. Which is frightningly easy to do, considering how much adaptive swim stuff costs. 50 bucks on some reusable large-size swim diapers here, 75 dollars for a pool seat she can sit in while working specific muscle groups there, you'd be amazed at how it evaporates. Throw in shipping and handling, you know the drill. I blew 200 of it yesterday on a single catalog, and I'm going to try and spend the rest locally-- we'll go shopping today while Kels is with Respite.

I'm paying for everything with casheir's checks so it's crystal clear where it all went, and saving all my reciepts. The money's been in a separate savinga account named, "Kelsey's DSPD Mag Money" waiting to be used. Thanks to advice from experienced friends in the system for many more years than I, I have learned that paper is my friend and I want things to be easy-peasy to go back and account for, even years from now if people don't think to ask until then. The all the budget woes we have this year as a State, it's almost certain no Mag money will be available at all, so we're trying to enjoy this two-year's worth. Oh, did I tell you, our Respite hours are being cut?

Kels got funded last September, but it took us until March to find a qualified Respite provider (the amazing and wonderful folks from RISE). So essentially, we had 12 month's worth of funding and six months to blow it all in (fiscal year starts over again in July). This year, we have 12 months to blow 12 months of Respite care in, and reality is hitting hard. We've lost about one-third of our hours, which basically takes us back down to evening coverage so I can write stories for my job, and some time on Saturday. I also budgeted time for someone to come with us to Church every Sunday so that I can get to my own meetings. I really, really need to be able to do that for me, YK? It's going to make appts during the day lots harder, but if I can just get through the summer, then in fall Elizabeth's in first grade school (read: all day) and things should be more manageable. I'm really sad about it, but I'm so, SO thankful that we have RISE and that we've had such a wonderful plethora of help these past few months.

I woke up with a sinus migraine today, and the screen is way too bright to be looking at right now, so I'll sign off for a bit and try to check in later.

...--Alli

2002-06-23T20:41:00.000-07:00

Oh, and demon child went right back into hiding as soon as I came down on her Depakene dose. She had pretty good day yesterday and an awesome day today. She was even fairly quiet during Church today! She pooped out after the first meeting and asked to go home and nap (she was falling asleep sitting up) so Super-Dave took her home and she crashed for a nice, long nap. She did have a bit of diarrhea today, not sure what's up with that. Otherwise she was just fine. We had a great time outside watching Izzy learn to ride her bike and hanging out with the other kids.

...--Alli

2002-06-23T20:38:00.000-07:00

On a MUCH brighter note, guess what???!!

Elizabeth can ride a two-wheel bike with NO training wheels!!!

She did it!! She got it!! She is the most amazing, big, bad awesome two-wheel riding kid on the face of the earth. Go, Izzy!!!!! Mommy is so VERY proud of you!!

...--Alli

2002-06-23T20:35:00.000-07:00

Okay, incoming gripe, feel free to skip for those whose gripe quota is full for the day...

What is the deal with ex spouses buying articles of clothing (or, perhaps, hypothetically, SANDALS) and then making a big deal, stipulating that said hypothetical sandals must remain at their apartment and never come to mine to be used there?? What, we're going to start with his/her clothing articles that can never be sullied by being used in the opposite household, now?? We transport the child clad only in a pair of neutral underwear and dress her once she arrives in the appropriate house's clothes??? I buy almost everything she wears on her feet or anywhere else on her body, and I've never cared what went down to that other house.... I just don't get it.

Even more despicable would be taking said child out of the house to talk to her privately and explaining that the sandals really need to stay at the other house but he's afraid Mommy will be mad about it, so would the child please be his human shield and break the news to Mommy while he slinks to the car to deposit the sacred sandles safely inside?? Peh.

...--Alli

2002-06-22T07:34:00.000-07:00

Thursday night, I gave Kels the one-half higher ml dose of Depakene as the NBC had instructed me. Friday was very illuminating-- she was a mess. Her PT summed her mood up best; "vile. Perfectly vile". She tried to bite another child in the play area of McDonalds (we went out to lunch with dear friends) and was basically incredibly agitated all day. It was remarkable. As the day wore on and the morning Depakene wore off, she became slightly less awful and by bedtime she was pretty much okay. The effect was amazing. Needless to say, her nighttime dose yesterday was the old, lower dose. I don't know how much more clearly she can tell us that she hates the higher dose and that nothing higher than where she is now will work for her KWIM?

...--Alli

2002-06-20T19:52:00.000-07:00

Yet another great day at school for Kels. Please, let us be onto something that actually works!! I upped the bedtime dose of Depakene just a titch tonight, as per instructions from the Neuro Behavioral Clinic. We'll watch closely for any changes.

Kels turfed it into a piano bench this afternoon and is sporting a lovely pretty goose egg right in the middle of her forehead. She looks like sweet lil' cyclops baby now LOL. She's fine though, and stuff like that is just part of being Kels KWIM?

Elizabeth is outside as I write this, trying to learn to ride her big girl bike without training wheels. She's scared and nervous. Mom's terrified. At my insistence, she has on every peice of padding from her roller blades. Elbow pads, knee pads, the helmet (of course). She did take off the wrist pads after admitting they made holding on to the handlebars harder LOL. She's so almost "got it"...

...--Alli

2002-06-19T13:13:00.000-07:00

This week is one of Kelsey's ESY weeks... she went yesterday and today. Yesterday, the school was so excited that they called me on the phone and basically said, "What did you do to her and can we have some more to give to our other kids??" LOL She sat through 20 minutes of circle time yesterday, listened and participated appropriately, and actually raised her hand and made a comment that pertained to the conversation at hand!!! I'm so proud of her! Today's note said it was "another totally AWESOME day" and that she did great for about 15 minutes at circle time. Therapies today have been outstanding, too. YAY, Kels!!!

We went for another appt at the Neuro Behavioral Clinic yesterday and they too are thrilled with how far she's come. They still think that things could get even better, if we can get her levels of Depakene up a bit more, so we're going to try again to raise her level but do it much more slowly and sneakily this time. I'll start next week, and we're only modifying her bedtime dose. So instead of going up a full ml on both morning and afternoon, we're going to go up half an ml on only the bedtime dose for a week, and then bump that bedtime one up to the additional ml. Then we'll add another half ml to morning dose after that, and finally get her up to the higher dose in about a month.

...--Alli

2002-06-19T07:02:00.000-07:00

Kels seems better. Yesterday she didn't throw up at all, just had one diarrhea stool in the morning and then was okay the rest of the day. She's a bit on the dry side, but we're gently re-hydrating her as fast as she'll tolerate. Maybe it was just a tummy flu after all? I still wish the doc had swabbed her, though. On principle, KWIM?

...--Alli

2002-06-18T07:42:00.000-07:00

Kelsey threw up all day yesterday. You could say it was an urpy day in the neighborhood around here. Today I'm busy catching up on the rest of the mountain of laundry she generated yesterday. She seems a bit better today though, no throwing up or dry heaves, although she still has some diarrhea. Today was her first "ESY" (Extended School Year) days; she gets a whole 8 of them over the course of the entire summer. I sent her off on the bus with an extra sippy cup of water, since she's running low on fluids after yesterday. Hopefully that's all it is.

I wondered if it was strep, and sent Kels to the doc with Dave (one of our favorite Respite guys) but the doc wouldn't even swab her for a rapid stress test, because he decided since she didn't have a fever and did have diarrhea that it simply couldn't be strep. GGRRRRRRR. What would it have cost him to swab her while she was right there?? In talking to other moms, I've learned in the past week that strep manifests itself differently in each person. None of us know what it looks like in Kels because she's never had it before KWIM? Her sister has it, this is still in the incubation period, and it's a very reasonable variable to rule out IMO. If she doesn't significantly perk up today I'll take her back to the doc myself and make them swab both of us (I've had a sore throat and a headache for days now). If it's not a flu bug, and it doesn't turn out to be strep, then we have to face the possibility that it's the you-know-what. I so, SO don't want it to be the shunt.

I'm off to clean up the house and do some laundry...--Alli

2002-06-16T22:45:00.000-07:00

Oh, almost forgot!

Some new pics

Anyone know how I can get those last three to be bigger? I'd welcome any suggestions. TIA

...--Alli

2002-06-16T22:42:00.000-07:00

Okay, things are still bonkers here... Elizabeth got strep throat and is still on antibiotics. I'm waiting with baited breath (pun intended LOL) to see if either Kels or I get it next. Kels is doing overall fabulously on the Depakene, in fact she was so good we tried to bump up her dose-- big mistake, psycho woman came back more each day, and when we got back to the point of her hurting herself and others I called the Neuro Behavioral Clinic and begged them to "stop the insanity", which they gave us permission to do. The mellow Kels is coming out a bit more each day, although the last couple of days she's seemed extremely anxious, almost panicky.

As for me, I'm trying to work in a few doc appts for myself into our busy schedule. I went last week and finally got my 'yearly exam' (note to any of you wondering: if you get it done at a teaching hospital like the University of Utah, not only does the doc get a turn with the evil speculum, the resident does, too. I'm almost walking normally again, but I'm still cramping.) Tomorrow I'm going back up there to see the dermatologist for my excema and overall freakishly dry skin. Like cracking and bleeding on a regular basis kind of dry skin. Okay, between those two things that's prolly all you needed ot know about my personal health and then some LOL Moving on...

Here's tomorrow in a nutshell, it's a pretty typical day... I go to see my therapist in the morning, then go get measured for my concert dress (remember the choir I joined? First concert is July 8th) and then I have to zip up to the U of U for that dermatology appt. I leave there, come straight back home and pick up Elizabeth and jet us off to Group. After Group we come straight home and I start writing like a mad woman to get my stories done before I fall asleep at the keyboard. Add to that school's out and we have kids home all day now, sprinkle in our seven therapy appts a week, throw in a dr appt for Elizabeth and for Kelsey for good measure, and you have a rough picture of my upcoming week.

I'm really sorry to be so silent, guys, honest. I'm trying. It's just finding that extra minute to get here and fill you all in. I'll try to do better = )

{{{{{HUGS}}}}}}}

...--Alli

2002-06-05T21:22:00.000-07:00

Sorry to have been so quiet, things have been bonkers around here

Elizabeth's graduation from Kindy pics

...--Alli

2002-05-30T12:09:00.000-07:00

Kelsey this morning while I was changing her diaper:

Kels: "Hey, mom! Do you want to hear a joke?"

Alli: "sure Kels, tell me a joke."

Kels: "Um, why did the apple cross the road?"

Alli: (incredulous that this is actually sounding like a joke and thinking, "okay, I'll play along...")" I don't know, Kels, why did the apple cross the road?"

Kelsey: (very triumphantly) "because he wanted to talk to the BANANAAAAA!!!!" ::bursts into hysterical laughter at her big, bad self::

...--Alli

2002-05-27T19:47:00.000-07:00

Conversation between Elizabeth and I as I sat here writing my Cosmiverse stuff tongiht:

Elizabeth: (while watching "Shrek" for the bazillionth time) "Wow... I didn't know that a girl could learn to do karate."

Alli: "Why shouldn't she?"

Elizabeth: "Because she's a girl, that's why"

Alli: "Are you saying that girls aren't supposed to learn karate?" (bristling with indignation and getting ready for a great teaching-Mommy moment)

Elizabeth: "well... yeah, only boys are supposed to take karate lessons and learn how to do that"

[insert standard gentle lecture about how girls can do anything boys can do, walking Elizabeth through several examples and seeing the Light of Understandng go on in her eyes, sprinkle with warm and fuzzy Mommy pride in a situation well handled, you get the picture here]

Alli: "...and so, girls can do just about anything boys can do, see? You can be whatever you want to be."

Elizabeth: (considers this for a minute) "You mean I could learn to pee standing up like the boys do?"

...--Alli

2002-05-24T15:35:00.000-07:00

Kelsey did some amazing stuff at her school assembly yesterday, I was very impressed. She did her own version of the Funky Chicken Dance, the Pledge of Allegiance, and "O Beautiful for Spacious Skies", along with some other preschool songs. It was extremely cute and entertaining, and even with all the hub-bub of the other parents and the increased level of noise, she held it together as long as we gave her the extra structure of either her wheelchair or her Rifton Chair. I got some really cute pics that they've taken of Kels over the school year, I'll have to scan them in and post them for you guys. After that we picked up Elizabeth and went out to lunch to celebrate-- the kids chose "Wendy's". A good time was had by all = )

She finished out the day in a great mood, did great stuff in therapies and had a blast with Dave, one of our Respite workers. Today she got to go swimming with Juliette at a pool Juliette has connections with, and they had another wonderful time. The NeuroBehavior Clinic continues to not live up to my expectations and finally admitted today that they won't have their act together until at least Tuesday to get Kels started on any new scripts, so for now we leave her kind of flapping in the breeze with no Adderol, and no anything else to replace it with. We've seen an increase in impulsivity without the Adderol and she's gone back to attacking that infected sore on her forehead on a regular basis-- mostly at school, so it's flaring up again. I'm going to try and get a handle on it this weekend while we have the extra day to be home and watch it closely and change the dressing frequently.

Elizabeth got to go swimming too (brave Juliette!!) and then Elizabeth got to go to a birthday party for a friend at the Fun Dome, so her day just couldn't get much better from her perspective = )

I had a couple of precious hours to get out this afternoon and went up to the Gateway, a new super-sized pedestrian mall in Salt Lake. It was really fun to explore a bit and pretend to be just a regular person like everyone else there. I found a great deal at Lane Bryant on a sweater-jacket to replace the sweater I've been wearing forever with a huge hole on one shoulder, and I feel good about getting it from Lane Bryant at a Wal-Mart price. I also splurged and got a new bag/backpack thing I've had my eye on and been saving up for-- it goes over my shoulder so I can still pick up and hold Kels while wearing it, and it has just all kinds of nifty compartments and zippered pouches to stuff things in so I can get organized instead of having a pile of stuck all stuffed in the bottom of my bag. So, it was a pretty nice day for me, too!

That's about it from here, we're looking forward to the long weekend for a little extra rest and a chance to get caught up on things. I'm going to try again to watch the first new "Star Wars" movie (I've never seen it) so that I can get ready to go see the second one in the next couple of weeks, and hopefully unbury my desk. Oh, and I have to get Kelsey's ESY (extended school year) stuff mapped out in my planner so I know what we're doing when. I'm considering putting Elizabeth in a summer arts and crafts program or something, to give her something to do. I have to see what's available, and then balance that against what I can afford.

...--Alli

2002-05-21T05:58:00.000-07:00

Oh, your trivia quotient for the day... in my travels online to find him, I learned that Nanook was the first Beanie Buddy ever to have blue eyes instead of the traditional brown.

...--Alli

2002-05-21T05:57:00.000-07:00

There was big news at our house, yesterday, Nanook arrived safe and sound!! Nanook is a Beanie Buddy husky dog. Elizabeth got one just days after the accident (I think that was from you, Bev?) and just clung to it for weeks and months after that. She carried that dog around with her just everywhere, slept with it, everything. I used to fill him up with extra Mommy hugs when she came to visit me at the hospital and then when she was lonely for me and I wasn't there, she could hug her good friend Nanook and he would give her a hug from me to tide her over until I saw her next. He was tremendously important to both of us. Then, one terrible day he got left behind in the SLC WIC office.

We realized what had happened before we even got home and tried to call, but we were one of the very last appts of the day and they were closed by the time we called. We called the next day, and the one after that, for weeks, but they never could find him-- I don't know if they couldn't be bothered to look or if some other kid in the WIC office just picked him up and went home with him, never realizing that they'd taken what had become practically a member of our family, KWIM?

Anyway, she's never stopped talking about him or asking for him in all this time, and we both missed him terribly. So I looked online until I found him (because by then he'd been discontinued and couldn't be found in stores anymore) and we saved up until we could order him. (A process which took longer because Mom doesn't have any plastic since the banckruptcy and so we had to pay by check and wait for it to clear, forever when you're six years old, you know...) Elizabeth has been haunting the mailbox everyday for two weeks now, knowing he was coming. Our hope was that he arrived in time for show and tell before the school year got out. Yesterday he finally arrived, and I don't know who was more excited and happy about it, she or me. Anyway, he's home and we're thrilled to have him back where he belongs = )

...--Alli

2002-05-21T05:49:00.000-07:00

Kels had yet another really nice day yesterday. She went completely without the Adderol for the first time on Sunday, so yesterday was the second day off of it. I left a message with the Neuro Behavioral Clinic yesterday for the lady I'm supposed to follow up with to see how quickly she wants to start the Depekote (or if we want to just run her without for a while and see if things stay this good). She did get to her forehead and bloody it on the bus on the way home from school, but other than that she left it alone all day. I'm continuing to do lots of dressing changes and slathering it with the antibiotic cream at every opportunity.

Yesterday, she actually slept in until I woke her up at 6:30. (She had been getting up at 4 or 5 each day intead) This morning it was back to status-quo, she woke me up about 4:15 and although I did manage to get her settled back down in my bed eventually, by then it was almost time for my alarm to go off at 5. Hopefully she'll get to nap at some point today. Mom, I doubt, will be so lucky = )

...--Alli