rain on tulips

EK started running a fever tonight — low-grade, only 99.something. But she sure is grumpy, and I can’t tell if its a stuffy nose, or teething, or something else entirely that is hurting her. Not what we need so close to surgery time.

(I’m crossing my fingers that she’s just cutting teeth; its been a while that she’s only had the 4 of them, and she’s been biting on her fingers the past couple of days. Just really don’t want it to be some kind of infection that may or may not clear before next thursday).

AE came home from school this afternoon, gushing about how she and her class are going to be famous!! Seems that the class and their teacher wrote a “Seahawks Fan Song”, and performed it over the intercom during morning announcements at school today. Her teacher sent home (via email) a link to the Powerpoint, with a recording of the song and all the words that go with it.

And then he sent a copy to a friend of his who works at a local radio station. The friend came out to the school, and re-recorded the song, interviewed some of the kids, wrote up a quick article about them*, and will be playing pieces sometime tomorrow for the whole area to hear!

AE is absolutely thrilled!

*There is a link from the story to the Powerpoint, if you want to hear some really enthusiastic 4th graders sing about their favourite football team!

So, a little girl who shall remain nameless (but will be identified by the initials EK!) decided that 12:30am was a good time to wake up and play last night. And she stayed up, laughing and talking and playing until after 3:30. (Or at least, that’s when I dozed off finally; pretty sure she was about out by then, tho she was still squirming a little bit even then).

I woke up 3 minutes before the alarm was going off — always hate to wake up ‘early’; those last 3 minutes might have just made the difference! (OK, maybe not).

The feeding/sleep person called today; more invasive, not good news. They are pushing for an N-G Tube, and are talking about our taking EK off all oral liquids. Fuul and I aren’t sure what we are going to do this time; its not an immediate, must be done today kind of issue, but they (the medical people) feel pretty strongly that it should happen this week.

I wish there were a black-and-white rule book for all of this stuff.

For anyone still interested (and honestly, for me! Its nice to be able to access my calendar from any remote location; no times, but I usually know what those are anyway!) So far, its not an excessively busy one, no ‘extra’ appointments — but I’m sure if you give me a minute, I can start filling that in! (Though, honestly, I hope not!)

(more…)

Happy New Year! The kids celebrated on Friday at school — AE made a dragon “kite”, and apparently they had a full-sized dragon that the kids got to take turns walking around in! (I wish they had sent announcements home so I could have known there was a photo op there! Ah well!)

Information on Chinese New Year, from Wikipedia:

Chinese New Year (Chinese: 春節, 春节, Chūnjíe; or 農曆新年, 农历新年, Nónglì Xīnnián), also known as the Lunar New Year or the Spring Festival is the most important of the traditional Chinese holidays. It consists of a period of celebrations, starting on New Year’s Day, celebrated on the first day of the first month of the Chinese calendar, i.e. the day of the second new moon after the day on which the winter solstice occurs, unless there is an intercalary eleventh or twelfth month in the lead-up to the New Year—in such a case, the New Year falls on the day of the third new moon after the solstice. (The next time this occurs is in 2033.) The Chinese New Year period ends with the Lantern Festival, on the fifteenth day of the festival.

Legend has it that in ancient China, Nian (”Nyan”) was a man-devouring predator beast that could infiltrate houses silently. The Chinese soon learned that Nian was sensitive to loud noises and the color red, and they scared it away with explosions, fireworks and the liberal use of color red domestically. These customs led to the first New Year celebrations.

Celebrated internationally in areas with large populations of ethnic Chinese, Chinese New Year is considered to be a major holiday for the Chinese as well as ethnic groups such as the Mongolians, Koreans, the Miao (Chinese Hmong), the Vietnamese (see Tết), Tibetans, the Nepalese and the Bhutanese (see Losar) who were influenced by Chinese culture in terms of religious and philosophical worldview, language and culture in general. Chinese New Year is also the time when the largest human migration takes place when Chinese all around the world return home on the eve of Chinese New Year to have reunion dinners with their families.

Just wanted to post a quick happy birthday to my mom! (Since her teenagers seem to have forgotten — typical, huh?? LOL)

I got to talk with her this evening, and she is going to (probably) come up and stay with the kids while EK has surgery! Yeah! (It takes off so much pressure having to get kids situated at various locations every afternoon while I’m away at the hospital with EK). She is going to bring my brother, K., with her, too, so the kids are really excited about that! (He is their absolute favourite!

So… quick, sing “Happy Birthday” before it isn’t her day any more!!

I finally broke down and bought the stuff for the Sopapilla Cheesecake, and made it for dessert yesterday.

I may just become addicted!!

Its rich, and creamy, and almost too much to eat even one piece, let alone the two that I really wanted! LOL

Absolutely worth giving it a try!

EK & I spent the day today at Children’s Hospital. Three appointments, all started late, and yet we were able to get done at the scheduled time, and didn’t have to have all the kids go to someone else’s home after school! (Amazing, really, since we tend to run long every time we go to any clinic visits there).

First we saw the ENT for her tubes/adenoidectomy followup (12/16/2005). Her tubes look much better (the drops the ped gave her monday have made a huge difference in the drainage and infection that was still there) but they are still ‘wet’ inside, so the ENT decided not to do her audiology test yet (he’s afraid that any fluid will still effect the results, so we are going to wait longer). He said he saw the sleep study test, and that obviously the adenoidectomy helped, but not enough overall. He said she has a 17 rating on her breathing (the higher the number, the worse her breathing while she sleeps); ideally they would like her to be at 5 or less. He said that taking her tonsils out will not get her to that point, but he’s sure we could bring her rating to under 10, so that’s next.

Surgery is scheduled for Thursday, 9 February 2006. (Won’t know the exact time, likely, until a day or so before surgery). She will have to stay at least one night in the hospital for observation afterward, and possibly for as many as 4 nights depending on swelling and bleeding and breathing issues.

(I called my Mom this afternoon, to see if she might be able to come up during surgery and stay with the kids, so I won’t have to try and manage getting them all to and from school and parcelled out to — willing — friends. She is checking on schedules at her end, then she’s going to let me know what might or might not work).

Next, we headed down to Radiology, where we got to meet with the Swallow Study specialist, and the PT/Feeding Specialist. (Unfortunately, I had to wait out in the waiting room during the test, because they won’t let pregnant women in the radiology department while they are running the xrays; luckily, she was very willing to work with the two ladies since they were offering her stuff that tasted like vanilla shakes and applesauce and cookies and yogurt cereal bars!) The good news is that she has never had pneumonia. The amazing news is that she has never had pneumonia. Because, the bad news is that she aspirates just about EVERYTHING they fed her — regular liquids, thick liquids, solids — everything. The only thing she did alright with was foods at applesauce consistency. I got to see the results of the swallow study (its like an xray movie — all moving stuff!), and there were definately bits and pieces and drips and drops — even a piece of a cookie! — that went down her airpipe rather than her esophagus.

Where the food collects (C), the ‘flap’ is supposed to close off the airway and let the food continue down into the stomache (D, E). Well, every time she swallows, a little bit of her food is getting past the ‘flap’ and running down the back of her airway. (I tried to find a good graphic demonstrating that, but just couldn’t). The techs said that its just a tiny amount each time, but she doesn’t even try to cough it out. They are afrraid that her body has just decided that this is the ’status quo’, and that its normal to have foreign ’stuff’ going into her lungs.

The swallow specialist doctor was out of town today, so she is going to call us on Monday (hopefully) and help us set up a good game plan for dealing with this issue. (The techs said that it would actually be easier to work with her if she wasn’t such a gung-ho eater! Its one of her favourite pass-times, and she really enjoys eating a variety of things, which makes her having problems with EVERY consistency of foods a problem.) In the meantime, they have switched us to a different type of bottle, and a different type of nipple, and we have to thicken any liquids that she receives with rice cereal. (The new bottles/nipples will allow for the passage of the ‘lumps’ that will be in the cereal mixture).

Finally, we went up to the PT clinic, and they ‘created’ a sleeping wedge for EK to try at night. The hope is that if she is inclined, she will aspirate less at night. That all sounds well and good, but EK sleeps better (breathing-wise) on her stomach. Funny how many things get promoted by each successive specialist that is contraindicated by the last!

So. Never a dull moment around here, huh? More surgery, more doctors, more therapy, and now she can’t eat or breathe (well, at least now we know she can’t eat or breathe). sigh

Some days I just get so tired!

I got EK to fall asleep last night with the ‘hat’ on, and the mask touching the side of her face, and was able to get the mask completely attached to the ‘hat’ shortly after she fell asleep. She slept that way for a good 40 minutes, but when we tried to connect the air hose and get the mask fitted more tightly to her face, she woke up, and fought out of the whole contraption. But 40 minutes with the stuff on is better than none.

Still a process.

We got to finally enjoy the fruits of DA’s intensive labor last night, when the District Honor Choir that he was selected for put on their one performance! (They have been practicing twice a week for the past 3 weeks, culminating in a nice little 20-ish minute performance). Aside from our arriving late and having to sit on the steps of the auditorium to watch the performance, it was a lot of fun, and — best of all — he had a good time!

They perfomed 3 songs — a ‘deuling meowing cats’ something, a 3 part harmony something, and a Hebrew song. (Sorry; all the names escape me now! Maybe I’ll get him down here sometime and find out what they were all called!)

Anyway… we were far enough back that we weren’t able to get a good close-up shot of DA, but if you look really close, you can just make him out in the middle row, straight up from the middle glare on the side of the piano, toward the left-hand side! (Good luck!! I have a hard time, and he’s my kid! LOL)

Just for fun, this morning at EK’s preschool/therapy class, I pulled out my camera, and got some pictures of her playing in the water play area and making teddy-bear cookies!

Day two with the CPAP (though with the split hose it was technically day one) went ok. I got her to fall asleep with the ‘hat’ mostly on, though I was never able to get both the hat and the mask on her at the same time.

Fuul waited until she was in full REM sleep during the night, and was able to get the mask onto her face, and held it there for 10-15 minutes at one stretch; he said that during that time, she wasn’t restless, and seemed to sleep soundly. (A first!) Unfortunately, we weren’t able to get the mask and the ‘hat’ on her while it was all running.

Its a process, right?

We went for our second 3D ultrasound today!! Supposed to get lots of great face shots!

And I could see where that would happen, if you didn’t have a baby who insisted on having both hands, the umbilical cord, and his foot in front of his face the whole time! Heh.

We did get a couple of cute shots, though… I’m including them here….

Clear face shot, REALLY clear hand shot — except the hand covers up so much of the face!

Full face, slightly right facing, with umbilical cord on lower left, and arm under chin. (The ‘fuzzy’ to the right side is where his face was sitting against the uterine wall.)

Left-facing profile, behind an arm… and a hand… and the umbilical cord…. The only thing missing from this shot was the foot that was floating around up there, too!

We let EK play with the mask and stuff all afternoon, and thought we’d try it out for bedtime… but when we went to set up the whole contraption, the main air hose had a split in it (right at one of the bends where it had been in the bag before it was opened). So, since all the air pressure was going out through the split rather than into the mask, we wrote off the first day as a total loss.

This morning, I went and exchanged the hose for a new one, and we will take another shot at it tonight. Or something.

Believe it or not, today marks the one year anniversary of Tulips!

(OK, calendar year; we’ll ignore that nasty month of December when nothing much happened around here, and most of my readers gave up on us… but…)

This year seems to have been so long and so short all at once, and when I go back and read over old posts, most times it feels like they’ve just happened! (Funny how that works, isn’t it?)

So! Happy anniversary to me, and here is to another fun-filled — less stressful??? — year ahead!