rain on tulips

We went to Disneyland with Fuul’s whole family (reunion-y) in December as a part of a big road trip vacation we did. Lots of fun. Finally getting around to sharing a few photos!

We had a lot of fun on our trip: saw California, Disneyland, SeaWorld, Universal Studios, family in Utah, pulled a trailer full of stuff home while we had chains on the tires, and the highway patrol was closing roads for blizzard conditions behind us! Quite the adventure, including blowing a tire on the trailer only 2 miles from home!

(If I ever suggest a three-week roadtrip-style vacation over Christmas again, please feel free to remind me of this trip! LOL)

I went to my doctor this morning for a massage therapy review, and we both think that its worthwhile for me to continue seeing the therapist for the forseeable future, since I leave feeling better, and feel better for a couple of days afterward. By the time I get in the next week I need to be there, but its ok.

I finally got in for the back xray he ordered last month (bad me) this afternoon, and — tho I haven’t seen the xrays yet, because my computer doesn’t have a cd drive and I’ve not been able to chase the kids off the other computer — they made me a little nervous. Asking questions about if I’d ever had an MRI of my back, and making comments about diffusions, and air in my stomach which is commonly seen in people with chronic pain. Probably ought to follow up with the doctor again, I suppose.

So. No new answers. Still spasming and twinging and numbness and “wrongness” in my lower-mid back. It probably can’t be good.

A quick photo collage of our goings-on the last 10-ish months. Click for a larger version!

We’re supposed to be on our way driving boys out to WashJam. But we aren’t. I got hit with some mean (though short-lived) food-poisoning something last night, and this morning I feel as though I’ve been run over, then they backed up and ran over me again, by a very large truck. Fuul stayed up with me (yes, I’m very thankful!), but then he stayed up the rest of the night playing XBox.

I need a shower. We really ought to be moving. I want to lay in bed and play with my new phone (I did figure out how to email/text myself the mp3 I wanted to use as a ringtone yesterday, but there’s so many more things to do with it!) and knit Fuul’s second sock (that’s been on hold forever) so I’ll be ready to knit my new hoodie when the yarn arrives today or Monday.

And I need to buy diapers today. That one is an absolute must. And I guess getting boys out to WashJam, too. Maybe I should see about hitting the shower and see where things go from there.

waiting for a little girl to wake up from sedation from her latest mri… this one is supposed to be just a followup, but i’ve learned not to hold my breath. followups never seem to be just followups. we ought to know more today, tho, as we are scheduled to see the referring dr later this afternoon.

Update: This was the worst wake-up EK has ever had from anesthesia; I think it was a combination of the anesthesia and just not wanting to be at the hospital, but she was grumpy for a good hour and a half, right up until we were walking out to the car, then she was all smiles!

As far as the follow-up goes: the syrinx on her spine is holding steady, which is good news (it’s not relocating or expanding). The cysts that were seen in her brain when she was younger are no longer visible, also good news. She does not have Agenesis of the Corpus Colossum (a common occurrance in 1p36 kids where a central piece of the brain fails to develop), which is fantastic news. She may have a slight Chiari Malformation (where part of the brain matter extends down into the spinal canal), which is definitely blocking some spinal fluid flow, but not totally impeding it, and needs to be watched/monitored, which is not so good news, but not horrible news. If it becomes worse in the future, it is surgically repairable, which is good news.

In the meantime, we take her home (with a detour to Burger King and a hamburger and a strawberry milkshake) and bring her back for a followup in a year!

I swear it ought to be midmorning now, but its after four.

I’ve gotten up and showered and cleaned the kitchen (mostly) and helped clean up the family room and run two loads of laundry (wet scouting 50-mile-hike ooginess — *shudder*).

I’ve sent one kid off to an all-day playdate with a friend and walked to the grocery store with the others for milk and tomato sauce and soda and corn chips.

I’ve put chicken chili in the crockpot and cajoled kids to do their jobs before they play xbox.

I’ve worked on cleaning my bedroom in 5-minute stints — so as not to get overwhelmed — and changed diapers and swept floors.

I’ve signed up to be a contributing writer to a newsletter for parents of kids with 1p36 Deletion Syndrome and thought some about what I should work on for my first article, then I signed up for a knit-a-long to work on a sweater that I’ve had the pattern and yarn for for more than a year.

Yet I feel like the day should be just starting. I feel like there should be hours and hours ahead of me.

I feel like I need a nap!

The heat wave has broken.

And I ought to be up and packing to go to a funeral.

I’m a little scared. I’m going away for four days with my parents to my great-grandma’s funeral, and I’m leaving Fuul at home with all the kids. I know the kids will be ok, but the makeup work on my job when I get home may just do me in!

Hoping to use the knitting time to make up for the chaos that will await my return.

That’s how hot it is here. Stupid hot. It doesn’t even cool down enough at night to cool down the house, so then the next day it just gets hotter and hotter.

All the stores are sold out of swim diapers, so I can’t take the little ones to the neighborhood pool. This record-breaking temperature heat-wave is supposed to last until the weekend. I may melt before then.

Every time I stop to take a breath, or enjoy a day without a headache or a disaster, I get sideswiped by something I knew was coming up but totally forgot about…

…GC’s two birthday parties last weekend…

…DA & JS’s scouting super activity tomorrow…

…DS’s scouting trip to the observatory tonight…

…doctors appointments and scheduled time with friends and other calendarized things….

And none of that covers the minor disasters that choose to sneak up on us… the glass bowl (on loan from a neighbor) shattering in the refrigerator this morning, for example.

Came home for a quiet evening, only to have a reminder pop up on the computer that DS should be at scouts in five minutes! (Lucky Fuul was home tonight, so he could run him this time, and I didn’t have to load all the little ones in the truck again!)

Woke this morning without a headache for the first time in 3 days… whatever this cold is thats running thru the family, its taking no prisoners.

We’ve not had stairs in a home since 1999. In the past two days, DA and DS have fallen down the ones we have now. Neither were really hurt, but I hope this isn’t the start of a trend.

Fuul worked from home today, and the cable guy came by and hooked up the internet and cable in one of the three rooms we wanted; turns out the two other rooms we want to be hooked up are the only other two rooms in the house without hookups. He’ll be back next Wednesday to finish the job.

I finished cleaning up the rental house today, and picked up the last stuff tonight. Left the keys for the landlord and we’re waiting to hear if we’ll get back any of our deposit. Feel free to keep your fingers crossed for us.

As it stands now, I’ve got to get kids’ schools transferred (for after spring break — next week) and unpack the new house, then we’ll finally feel moved! But its all on the downhill side, I think!

The truck is out front. Some rooms are empty. Some are emptying. Some are not nearly so ready, but people keep taking stuff out anyway. We are planning to stay in the new house tonight.

There is no cable or internet in the new house. Ugh.

I may be somewhat MIA from the blogosphere for a few days while we get that sorted out.

There should be an ‘easy’ button you get to push when you’re trying to move that puts the rest of life on hold so you have time to pack instead of doing laundry and cooking and cleaning and running errands and going to appointments… because I’m not getting much done on any of those fronts with everything needing to be done at once, even *with* my mom here helping… and now I feel bad that she’s just wasting her time sitting here while I have to keep up with the rest of ‘regular’ life.

Wake me in April.

I worked all day yesterday, laundry and gutting the garage. Seven more boxes went to the DI trailer at the end of the day. There’s a pretty good size dent in the garage now, and the next big section to be done is actually a lot of empty boxes, so I think it probably looks a lot worse than it will be to get through. Unfortunately, I managed to re-injure or just aggravate the recently recovering injury to my right shoulder, so my right arm is all nerve pain/numb/tingly/ouchy again. I just finished taking all the anti-inflammatories on Sunday, and I thought it was all good. Maybe Monday was too soon to work so hard. But I can’t just sit and wait forever, can I? I mean, the move is going to happen before the end of the month, ready or not! (And I’d so like to be ready for this one!)