rain on tulips

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

EK and CC went back to school this morning, the third and finall group of all the kids this year! They were ready early, and waiting-waiting-waiting for the bus to show up.

EK is in her last year of preschool (*gasp!*), and started off well. She was invited to sit with a cute little girl when she got on the bus this morning, and seemed happy to leave and happy again to get home afterward. Her teacher called after school to let me know that the day went well and she played a lot with the other girls.

CC loves being at school again, even though his best friend from last year has moved on to Kindergarten this year. I’m hoping that he makes good friends with some new kids this year; but we’ll definately be planning some playdates soon!

And my morning? The first time in the car when I realized I was totally alone? That was a little weird. It’s going to take a little getting used to.

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!

EK, 4 1/2 years old.

ek looks the natural bassist, doesn’t she?

The last day of school finally ground down today… amidst the first rain we’ve seen in more than a month! Its cold, grey, rainy, and the kids have been home for hours playing board games, guitars, computers, and there’s a pot of soup on the stove for dinner. I’m missing my nap time — think I can convince them all to lay down for an hour this afternoon? — and any hopes of attending the neighborhood end-of-school pool party are kind of being dashed by the rain.

On the other hand, the cool weather has me thinking I’m cold, I should knit a sweater (because that would happen fast enough to alleviate the cold, right?)

As the summer is gearing up, we’re happy to report that the compound bow Fuul got me for our anniversary is seeing lots of use at the local shooting range (can you say “family pass”), the neighborhood pool is heated, and JS is spending more and more time here at home, even if most of that time is spent glued to video games and guitars. (They’re all turning into teenagers, I suppose).

DA’s musical television debut should air this evening on the news; I have both the six and eleven o’clock episodes scheduled to record, and I keep checking online to see when they put the longer version up so I can share it with everyone.

DA and AE are in the living room re-jiggering “Hoist the Colours” for guitar; I think they want to take it to the next open mic night at the local coffee house.

My yard is overgrown; the brambles have started shooting out of the ivy and I’m not sure how to get them out without killing off the ivy too. And I need to do some tree and bush trimming and clean out the gutters. Woohoo.

EK’s talking is taking off… only none of us can understand 95% of what she’s saying, so I need to find her a new speech therapist for summer, to take advantage of the explosion. But its so exciting to see her making the effort!

We finally reverted this week and got a ‘landline’ phone, because the kids were running up my cell phone bills. (They keep asking me how they charge for the phone if it isn’t by the minute! Poor kids have no idea how landlines work!)

OK. Going to go check on the soup and see if it isn’t time to eat something warm and do some knitting in this chilly grey weather (here in the middle of June!). Hope you all are having a spectacular summer!

EK and CC’s class did a mini performance for their last day of preschool, with a little singing, a little instrument playing, a little dancing. I just couldn’t resist sharing the dancing! (EK’s in the lavendar shirt, CC’s in the burgundy.)

The house-buying is moving forward; signing scheduled for next Friday. My shoulder is feeling better; still have a few days left of a prescription anti-inflammatory for tendonitis for a pulled tendon. Packing/cleaning/dumpstering is going but much more slowly than I had hoped. CC’s preschool evaluations are finished; waiting to hear if he’ll qualify to start preschool at EK’s school. EK’s been down with a cold, missed some school; she seems pretty much back to herself today, so I’ll send her back to school tomorrow. The other kids are busy with school and church and getting excited about moving. DA keeps reminding me that he hasn’t gotten to see the new house at all yet. Maybe he’ll just be surprised!? He performed with the orchestra last night during the sixth grade orientation at the Junior High, and was excited when he got home because his solo worked out well, and he was congratulated by his teacher. He’s really loving the opportunity to play guitar in the orchestra! I’ve been knitting — finished a pair of socks for Fuul, a pair of fingerless gloves for me, and I’m working on a cropped cardigan and a lace shawl right now; mostly the knitting is reserved for late-night, after the kids are in bed unwinding. Oh, and my swap package from TN finally arrived… filled with some great yarn, a pretty pink knit shawlette, stuff for the kids, hot cocoa, some great candies, a cool pen, and a fancy journal! Once I’m through with the moving, I’ll have to get busy using all that stuff! I did something to my left knee yesterday, and now there’s a tendon or something underneath my kneecap that HURTS and keeps popping whenever I straighten or bend it, and so that’s slowing me down, too. Because I needed something else in my path.

Ten more minutes to browse my email, then I’ve got to suck up the pain and get moving on the day. Laundry and cleaning and packing and some grocery shopping await, plus all the regular activities that happen around here. I’m gonna need a vacation when all of this is over!

I just put EK on the school bus in jeans, tshirt, boots, a coat… and a Cinderella princess dress.

(It was a compromise to get her out of the other princess dress she slept in last night. *sigh*)

I was never going to be one of *those* moms. Funny how times (and the battles we choose to fight) change.

(click to embiggen)

Its been a full year. That being said, I’m glad we’re leaving it behind, and I’m glad we’re moving on into a new one. Here’s to new beginnings, new starts, and new futures.

Hope its a good new start for everyone!

in a little Christmas crazy?

I’ve been shopping and shopping and shopping the last few days and not making any progress.

The snow keeps falling and falling and falling, and the roads are chunky ice off-road adventures. Ugh.

And the bad news reports have been trickling in that the big box delivery trucks may or may not make it past the chunky ice off-road adventures to deliver the last of the Christmas gifts pre-Christmas.

Oh boy.

This whole white Christmas thing leaves a lot to be desired! (Though the NCIS marathon is kind of fun….)

Now the snow arrived.

This is the storm that they expected to hit yesterday when they call school on account of inclement weather. I wish I’d had enough presence of mind to do all those ‘other’ last-minute shopping things yesterday that I put off in case the storm really moved in in the afternoon. Silly me, listening to the weather forecasters.

EK had a sedated BAER (ABR) hearing test and an MRI on Friday – took MUCH longer than they had said at the outset, but doesn’t it always? And, they forgot to call me back when she came out to recovery, as well, so by the time I called and got back there with her, she was eating her second popsicle and watching Curious George on television.

We got the results of her BAER/ABR immediately (they did that test first): her hearing is good in her right ear, and less good but still good in her left. So, that was good to hear. There is still the question of whether the ‘clearinghouse’ processing part of her brain is dealing with the sounds correctly, but at least we know that the sounds are going in correctly. And, that the ‘echo’ effect that they usually don’t see in kids who have tubes like EK was present as well, so that’s good. We’ll still continue behavioural hearing tests every 6-9 months, but for now we got good news.

This evening, though, we got a call from EK’s ped that she got the report on the MRI, and that EK has a syrinx from t6 through t12. We have a referral to see a neurologist (or to make an appointment to see a neurologist) and find out whats next. I know that in many cases its nothing, and nothing to do, and nothing to worry about. So I’m trying not to worry about it. But in the meantime, I’m worrying about it, and all the possibilities, and … yeah.

To ward off the worries, I’m making lots of progress on the sweater-for-commission that I’m working on for Christmas for a woman at church; working my way up the fronts toward the shoulders now.

She came home from school, loved on her dog, found her Cinderella Barbie, asked for help with her Princess dress and crown, and is a happy princess waving her septer and watching Spongebob. Oh, to be four again!