rain on tulips

EK had her 3 month follow-up with the ophthalmologist today, and I guess all is well! I took in a printout of this 1p36 diagnostic report, so they could see what the specific instances and occurances of different problems are, and they said that at this time, EK doesn’t have any of them! Woohoo! They want to see her again in 4 months.

About her eyes crossing: they are pretty sure that it is still pseudo-strabismus (looks like crossed eyes, but not a real issue), so for now we just let it go.

The Dr did mention that we should plan on her having eye surgery sometime before she starts Kindergarten (4 or 5 years old, unless things change drastically between now and then). Her eyelids sit rather low (like lazy eye in both eyes; they are equal, so she just looks like she has smallish eyes). They will do surgery to either tighten the muscles that pull the eyelid open, or they will put in ’slings’ that will carry the weight of the eyelid when they are open (either silicone or muscle transplant, depending on how things look when we get that far). I asked if this was important, or if it would be more cosmetic. The Dr said that, while it absolutely would be cosmetic, and that there is a fantastic plastic surgeon in the area who does wonderful work with kids’ eyes, in EK’s case it will be utilitarian as well: she has already begun tipping her head back in order to see thing unobstructed by her eyelids. So, surgery in about 2 years for her eyes. Can’t be fun, but will be necessary.

So. We don’t have to go back again until the end of October. Not too bad a deal, I guess!

Its been two months since I’ve done this, and now EK’s speech therapist has requested a list of words she is signing, so I’ve decided to go ahead and update here, as well!

Current vocal sounds: “Hello”; ‘ma’; ‘da’; ‘ba’; some Vowel sounds.

I guess the speech lady talked to Fuul about what we need to focus on with EK. With this much sign language, she is not ‘behind’ in language, though she is absolutely behind in spoken/oral language skills. But, because she has this much ‘language’, she may not have such severe learning disabilities — more a lack of opportunity. Or something. So, they want us to hold of on trying to get her into a ‘real’ sign language program, at least for the immediate future, and see how things go for the next several months. If she continues to lag further behind in her oral language, then they will look at introducing her to a more complete sign language.

(My concern is that if we do wait another few months, that puts Fuul and I and the other kids that much further behind, and EK that much further behind in observing a ‘whole’ language that she can mimic — something she is already really good at! But, there it is. We are waiting again.)

new since 20060420 wordcount

EK has just perfected puckered kisses… and we can even catch them on the camera on occasion!

One huge upside to EK’s never really tried kissing before now: we have skipped directly over the slobbery, open-mouthed kisses that most toddlers go through! I’m certain we’ll get our share with CC before too long, though!

Sun, sun and more sun up our way of late, and so this afternoon I dug out the swimsuits, played ‘hand-me-down’ of the different sizes, and let the kids play for an hour in the sunshine and sprinklers in the backyard! Even EK and CC got in on the act — having never been in sprinklers before, it was a day worth documenting!

Ah, the joys of summertime! (Maybe its time we invest in a kiddie pool? My only real reservation is EK playing out back: she is drawn to water like a bee to honey!! May have to think this one over!)

…only worse!

Fuul woke me this morning sometime around 6:30am, when he and EK arrived home from the sleep study. His first question was, “Can you give her a bath??”

Well, blah! I just gave her a bath yesterday! because she had mashed potatoes in her hair! But yes, it was true: she was in desperate need of a bath, and more specifically of a good head-soaking. (Its the only way to get the now-hardened lead-attaching residue out of her lovely locks).

Maybe we should have just left it that way, and said she was going for a new incarnation of an ’80’s New Wave ‘do?? Nah. Never would have flown!

(As far as the sleep study: I guess she must have done much better, in spite of not having slept very well. She never sleeps well at these things, what with all the monitors and people coming in and out and messing with the leads on her head. But the techs told Fuul “Thanks for coming”, instead of “She quits breathing 50 times an hour!” like they did last time. Now, we wait for the official report — which, since they didn’t freak out, could take up to a month. Ah well. I like listening to her sleep now, with normal toddler snores, instead of oxygen-deprived desperate snores!)

For dinner last night, we did an at home, in the oven variation of a Dutch Oven potato and chicken dinner that my dad made for us when we were camping for the reunion. It was pretty yummy! (I went off a loose description of what was in it from my mom; found the recipe online afterwards, and was surprised to see that some of the ‘additions’ I had made are actually present in the original recipe!)

The kids liked it (well, except for GC, who hates potatoes — unless they are ’smashed’; funny thing: if you smash the potatoes that are on her plate, she’ll happily eat them right up! Odd girl!), and I think we may have to make this a more regular meal. (Will have to remember to buy bacon for it, though. That’s the hard part really, I guess!)

Its an oddly quiet evening here at home.

Funny thing, when you have 7 kids (or 6, or 5, or any more than 2!) and you take one away, suddenly the noise level and chaos seems cut by half. With only the loss of one.

EK had to be at the hospital at 7pm to be fitted with the leads and monitors for her sleep study; Fuul called at 7:30 to ask if she had napped today, and what the dates of her surgeries were. I’ve not heard from him in the intervening hours (3½, to be exact). I sent them with the LOTR movies, and The Wiggles, so I know they aren’t bored. And Fuul let work know that they are completely on their own, without benefit of his input all night, so I know he’s not working. (His coworkers called here at 8, because they knew EK was going into the hospital, but they didn’t know why, and were worried. They work Fuul to death, but they’re sweet guys all the same!)

So. Kids went to bed a little too late, and CC is already sound asleep on my lap waiting patiently for me to move him to his own bed. All that’s left, I suppose, is for me to go to my own bed, and pass out for the night.

But its a hard thing to do, when Fuul is away. (OK, granted, he works all the time — 20+ hours a day the last month, truth be told — and rarely makes it to bed at all. But, just knowing he’s here in the house makes it easier to sleep at night.) Ah, well. You gotta do what you gotta do, huh?

And, I miss my smiling girl! (She go-go-go’s all night, but she sure is sweet!)

EK and Fuul are leaving in an hour and a half for the local children’s hospital sleep clinic — a follow-up to the study done in January that precipitated EK’s getting her tonsils out in February (covered in whole here, here, here, here, here, here, here, and here).

Hopefully, the news will be better, and we will be back to ‘teaching a toddler to sleep through the night under normal circumstances!’ LOL Feel free to keep your fingers crossed for us all!

For the first time in a LONG, LONG time, I have updated the color scheme on Tulips. It was about time! So, for now, instead of ‘tulip’ colors, I’m running with ‘rain’ colors! Because I can!

If you would like to see what I am leaving behind, you can click here! (Keep in mind if you are reading this at a much later date, say in archives, what you find at the end may resemble nothing even close to what I am pointing it to now! LOL This is my test link, for when I feel like playing around!)

I really don’t need to start another quilt… but, oh, this one is so pretty! And so simple! And, surely I’ve got enough scraps around here to throw one together??? (Maybe background on the new applique’ quilt I’m getting ready for??? LOL

(BTW, its called a Pineapple Blossom pattern.) Here is the link to the printer-friendly version.

EK had her follow-up swallow study and pulmonology appointment this morning, and things are pretty much status quo.

First we went for the Video Fluoroscopy Swallow Study: essentially, they strap EK into a little reclining chair with a video xray alongside her, and feed her barium-based foods, and then watch them go down her throat. Its pretty cool, watching how she sucks and swallows from cups and bottles and sippy cups, and how the liquids react differently. The status quo means that we are still waiting for her to be able to safely drink ‘thin’ liquids (anything thinner than ‘nectar thick’). There were a couple of instances where she actually aspirated little bits of the thin liquids, and she never did cough it back up. *sigh* But, its only been a few months since surgery, she still is struggling with low muscle tone, and still has issues with oral motor planning. But, in the big scheme of things, having to thicken her liquids is a small price to keeping her happy!

We waited almost two hours past EK’s appointment time to see the pulminologist, because, as he explained when he finally arrived, they still have somewhere in EK’s chart that she has CF (Cystic Fibrosis), and they scheduled her in a CF clinic (the busiest in the Pulm department!) rather than a simple chest clinic. I’ve spoken with people before about getting her records corrected, but it seems they just haven’t done it. Dr. D said he will get two of his people on it, and he seemed really convinced that that will happen! (I hope so! And, for the record, he did seem really apologetic about our being seen on such a busy day, rather than a ‘quick’ chest clinic day).

He said we can quit her Prevacid on a trial basis (I tried to tell him she’s hardly had it, but if he wants to think we are stopping it now, fine), and that she should be healthy until fall, easily. She is also supposed to be absolutely sure to get a flu shot this fall, to avoid any other possible complications.

I asked about her weight gain — since she had her tonsils out in February, she has gained about 8 pounds, and about 4 or 5 inches! (That’s more than 1/3 of her body weight that she added! *ACK!*) He looked at her chart, and could see clearly where she went from 8%-ile the first 6 months, to 25%-ile the next 9 months, to (now) over the 75%-ile!! He said it would be more concerning if her height were not matching her weight, but that it is absolutely important that we watch her for any weight gain that does not coincide with height gain as well. He did say that it is true as well (when I mentioned reading about cases) that many children with low muscle tone (hypotonia) do not require as many calories on a daily basis as an ‘average’ child.

So. Everything is status quo, and we go back again and repeat the process in November. (At least there is a reprieve from the ‘every three months’ camp!) They want to see her come cold and flu season, and make sure she is doing ok still!

I did get the Bentobox Butterfly quilt done for Fuul’s coworker (before we left on vacation, even!), but I just finally got a picture of it this morning, before we gave it to him officially! (The pattern is Bentobox; the butterflies are because it was quilted in butterfly patterns).

For JS’s One Hour today, we made french bread. (OK, yes, it took much longer than one hour, so all those ‘waiting’ parts in between the actual hands-on working parts didn’t count against his time!) For dinner, we split one and made garlic bread to go with the Spaghetti; the other we just cut into slices!

Yummy!

He wants to keep working on baking bread til he has it down pat, so he can start that dating thing the instant he turns 16! LOL

In trying to set up a ’schedule’ (however loose it needs to be, with all of EK’s appointments, etc) for the summer, I came up with a new plan to try out: One Hours.

Essentially, each of the five older kids will be assigned one day a week in which they will be guaranteed one hour of my time to help them with a project, or, if they don’t require help, they will be guaranteed one hour when they will not be asked to care for a younger sibling, or be called away from something they want to work on.

We started today, with AE being the first. She got supplies to make a quilt for Christmas, and we got all the inital cutting done, and then life ensued. So, this afternoon during her One Hour, we spent about half sewing strips together (the next step), and about half cooking French Pancakes for dinner! (Served us both: she got the experience of cooking, and I got help in the kitchen getting dinner ready!) She did most of the sewing herself, and nearly got my sewing machine up to full speed while she was going! Next week on her day, we are going to press and cut the strips, and maybe start sewing the 9-patches together (she is making a purple and while Irish Chain quilt).

JS has already been planning his day for tomorrow: he wants to bake bread — from scratch! — so he will have fulfilled that requirement for dating. (I keep telling him he still has to wait until he is 16 years old, but he’s doing his best to have fulfilled all the other requirements beforehand! Thanks, Grandma T, for the precedent! Do you have any more!?)

DA wants to cook snacks; GC wants to work on her knit scarf; and DS? He’ll probably want his hour to play basketball, but whatever it is, I’ll do my best to ensure he gets his time!

So. Day one down, a whole bunch left to go! Hope we can keep it up!

Just a quick update on the mastitis…

I’m feeling a lot better, but I had to quit taking the antibiotics: CC and I both were developing a quick, painful case of thrush, which was not responding to acidophilus because of the huge influx of antibiotics. So, I quit. Now, I recognize how bad that is, since that is how ‘resistant’ infections are nurtured, but I couldn’t deal with thrush on vacation. Made a choice; will live with it now, I suppose.

So far, so good. Lots of acidophilus and the thrush seems to have let up; no more plugged ducts; no pain or symptoms of infection. Keep your fingers crossed that it will keep up.