May 31, 2006
I finally got down to Deseret Book today and got DS’s scriptures to give him for his birthday: they are blue with silver edges, and I got them imprinted with his name in silver. The really amazing part? His entire name fit on the cover!! (I was afraid we’d have to use an initial, his name is so long!)
The really scary thing: the baptism coordinator called this evening, asking if we could provide someone for the closing prayer, and the intermediate musical number. They need to know what music we are going to do by tomorrow… what on earth was I thinking???? Ack!!
Started looking for things like this today based on the Speech/Feeding Therapist’s recommendations. I found this site, which carries a whole variety of oral-motor stimulating toys, many of which the therapist mentioned specifically! I may need to do some shopping.
May 30, 2006
Nate Hanson posted about making contact with other parents of 1p36 syndrome kids, and about how difficult it is, especially with the rarity of occurrence. He and his wife have been very lucky in that they were given contact information for a family who is just ‘putting it out there’ to be contacted, and they are finally finding someone with whom to share the ups and downs of 1p36′ers.
He has also offered to allow people interested to communicate with one another through comments on his blog, as there are so few active resources out there for parents. I commented yesterday, because I was so thrilled to have found anything out there! Wouldn’t it be great if, in lieu of actual IRL* support groups, there could at least be online ones?? One can hope!!
*In Real Life
 We’ve found some new snacks at our house: “Tings!” They are like, if you took Cheetos, made them healthy, and didn’t put the cheese on them! (YUM YUM!)
(Check out the ingredient list: Corn meal; Rice and/or Sunflower Oil; Nutritional Yeast; and Salt. Simple stuff, huh?)
I can also recommend the Pirate’s Booty and the Smart Puffs. I see on the website that they also have Pirate’s Booty with Caramel, which we haven’t tried yet, but are on our list!
We can buy these at our local Fred Meyer’s, in the health food section; or, you can buy them online by the case (for a substantially better price, I see!). I may be ordering a couple of cases, because all the kids like them, I like them, and EK can eat them without too many teeth (9 at last count), and I can pretend I don’t feel guilty feeding my kids snack chips!
Today is the last day of a 14-day course of antibiotics for EK, who was diagnosed on the 16th with a sinus infection, and for the first 5 or 6 days, we were seeing a bit of improvement. But, over the last 4 or 5 days, she seems to have been regressing again. Not to the same point she was at, but her nose is definately ‘oogier’ than I’d like to see.
I guess I will wait a couple of days (after her final dose tonight) and see if things seem to be worsening again, or if she’s just caught a cold on top of the infection.
(The ped said that it can be common to see persistent infections in kids who have had N-G tubes, and that since she got the tube at the same time her adenoids came out, it all could just have been contributing to one another back and forth. Unfortunately, there is no way of knowing which came first, which caused which, and if it all might have been avoided if she hadn’t had to have the N-G tube. I think I spend half my life second-guessing what we do with this little girl. Good thing she’s so cute!)
May 29, 2006
May 28, 2006
Happy, Happy Birthday, DS! (When did you start looking so old!?)
We celebrated DS’s birthday tonight, with presents and ‘cake’ (he wanted Key Lime Bars instead of cake — yummy!), and promises of dinner out tomorrow night! He was really thrilled with what he got, and with the excitement of turning eight!
He had his bishop’s interview this afternoon, as well, and is planning on his baptism next saturday! Grandma and Grandpa J are coming up for that, and that in itself is quite the thrill!
DS wound up getting 4 different lego things — two ExoForce guys, one small bionicle, and a MegaBlocks Tank. He also got a shiny soccer ball, a ball pump, ‘flexi-cones’ for marking off goal areas, and shin pads. And, he got a Sacagewea dollar from his M&M cousins, a chinese jumprope, and a glow in the dark Pirates of the Caribbean: Dead Man’s Chest tshirt! 
The only thing I haven’t gotten yet, though, is his scriptures, with his name on them (traditional baptism gift!) My mom said that the bookstores where we buy them will usually do the imprinting inhouse, so I need to find that out ASAP. (Unfortunately, I’m afraid that the store won’t be open tomorrow, since its a holiday.) Nothing like a time crunch, huh? (When I bought AE’s, I have to admit that I didn’t get it done til the day before her baptism! LOL)
So. The kids got too much sugar, DS got too much stuff, and everyone had a pretty decent time!
(And somehow, all those years keep slipping by….)
May 26, 2006
 Fuul and I took EK in to get phase one of her new orthotics taken care of today. We met with her Physical Therapist, and the Orthotics Guy, and spent a good hour and a half watching her walk, watching her stand, then casting her feet and ankles. She was pretty complacent with the entire process, didn’t try to pull away from the Orthotics Guy, and let him do his thing in the fastest way possible!
 These are the casts that they wound up with: they are split down the front, as the important part for fitting the new orthotics is in the sole/arch/ankle area; the braces will be open on the front, with velcro straps to keep them on, and an elastic strap around the back of her ankle, to discourage hyperextending her knees (a huge issue right now, in addition to her walking all the way on her arches/inside anklebones).
 EK even put up with another 30ish minutes of ‘real’ PT after all the fittings, and color choices, and measurements. Her Physical Therapist had her working standing next to a swinging platform, so she could work on the balance necessary in shifting weight from one foot to another: a skill she will need to perfect to be able to walk.
This is an image from a company in the area that does orthotics; the company we are working with does basically the same stuff, only closer to home. EK’s are going to be lined in a bright blue foam, with blue straps, and a purple-striped, “Tigger” ribbon across the ankle strap — the only one that shows!  (They had a really cool purple/white/lime green camouflage foam, and we would have gone with that in a heartbeat if they had had lime green ribbon/straps, but they didn’t, and none of the purples quite matched, either. If they had had a really ‘girlie’ pattern (like this image) we probably would have gone with that. As it is, though, the dark colors won’t show dirt so easily, and that is always a plus! (Now we get to go shoe-shopping again, to get shoes that will fit with the new braces.)
The downside is that the Orthotics Guy said it will take about 2 weeks to manufacture them; so we are back to waiting more. *Sigh* At least we now have a ‘deadline’ to start looking forward to!
I finished the orange star quilt for CC before he was even born — before EK had her tonsils out, even! All that was left to be done was the quilting, and that shouldn’t be too big a problem, huh?
Well, for a while I played with the idea of learning to machine quilt (the final lesson in the sampler quilt class I took over the winter), and would machine quilt it as a nice project. But, I love the look and feel of a handquilted project, and this is for my Little Boy!
And then, this week, I have injured/reinjured my right wrist and thumb, and I can hardly flex my wrist without pain, and can barely use my thumb in any useful way. Least of all to hold a small quilting needle.
So, I hemmed and hawwed, and finally decided that I can either leave the orange star quilt on the back of the couch for another few months, ‘teasing’ CC with it (he stares at it and talks to it when I sit with him on the couch), or I can just suck it up and machine quilt the thing.
But really, am I going to get that done in any reasonable timeframe, either?
So. I decided to do something I have never done before: I called the lady who taught my sampler quilt class, and asked her if she would be willing to machine quilt the orange start quilt, just so it would finally be done.
I am still second-guessing it: I am giving my son a quilt that I didn’t even bother to finish on my own. And, yet, I am going to be giving him a quilt that is finished, and not simply sitting on the back of the couch taunting him. Lesser of two evils and all that rot, yes??
(My friend could probably have the quilt done in a couple of hours if she is into it, so I figure it will be back in our hands shortly! –Though, honestly, I don’t want to put any pressure on her to get it finished, so it could be a while. But surely less time than if it stays here on my couch!)
And: now that I am not holding myself back (seriously, I’ve been using some serious restraint!), I might start another new project! LOL Or, at least, pull out another already-started project that still needs finishing. (I was making a conscious effort not to start another new thing til I had at least finished up the orange star — I’m working hard to avoid the ’start a new thing and leave the old, half-finished one sitting in a box for years’ thing!)
I’ll post pictures of CC and his Orange Star quilt as soon as its back from the quilter!
May 21, 2006
Its been a full and fun 13 years that Fuul and I have been enjoying this ride… here’s to a few more lucky thirteens!!
(And, for anyone interested, we did very little to celebrate, though Fuul did wake me at midnight last night to give me a dozen roses, a tinkerbell locket, gold heart earrings, a pink-leather watch, and a dozen roses! He sure is the romantic one, huh? Tonight we are going to have Crazy Chocolate Cake and chocolate sauce to celebrate, while we watch King Kong with the kids! Woohoo!)
May 20, 2006
Seems in the last couple of weeks, between carrying two babies and pushing a stroller one-handed, then compensating for having done those things, I’ve managed to injure my right wrist and my right thumb. Any weight-bearing on my wrist results in pain — it feels like it needs to be popped, but is far to ‘flex-ed’ to pop — I think I’ve stretched or pulled something. And now, my thumb can no longer bear weight (like picking up a baby without pain), and I notice each and every little movement that it makes.
*sigh*
I’m sure it will all get better; Fuul thinks I ought to go see a doctor about it. Don’t much like that idea, though. (Why can’t I see the nice pediatrician, instead of *my* doctor who just isn’t all that personable or approachable?? Blah).
May 17, 2006
EK finally got in to the speech people through our health care, and got a complete evaluation done. So far (not certain what test they used) her receptive language is at about 11 months, and her expressive language (not counting sign language) is 6 months. That’s about a year delay. (Honestly, I knew it wasn’t good, but didn’t realize it was that extreme). *sigh*
She will start speech therapy next week, and hopefully we can get her all caught up before too much longer!
May 16, 2006
Mother’s Day was a lot of fun around here… got some nice art projects from kids done at school, and Fuul took the kids out shopping for gifts: I wound up with flower seeds (really need to get those planted!), a bunch of picture frames, and a new printer/scanner/copier!! Woohoo! I’ve been playing around all week with the printer, getting things figured out so I can get more recent pictures of the kids up on the wall! 
May 13, 2006
We met with the ‘head’ physical therapist yesterday and, long story short, EK will be fitted for custom orthotics in two weeks (May 26). The PT agreed that she is walking too far in on her arches/inside of her foot, and it is making her knees knock inward. She is suggesting EK wear orthotics for a while that are fitted as arch supports and ankle supports, extending about half way up her calf. She will need to be in them about 50% of the time; the rest of the time we will focus on building up her strength and letting her learn balance without the supports.
It should be interesting. (If it works out, I’ll try to get some pictures when they are casting for the braces; if I’m not having to hold her down, that is!)
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