Friday, June 23, 2006
The evidence was mounting. It was too much to ignore.
Wet towels on the floor in the bathroom. Dirty socks and underwear behind the bedroom door, mere inches from the hamper. Magazines, Barbie dolls, shrugged-off jackets and last Monday’s lunch leftovers were littering another bedroom floor. Books, blocks, Matchbox cars and two hundred ball-pit balls dispersed about the living room
Crumbs littering the table, the bread bag left open, an empty milk carton in the fridge and peanut butter and jelly fingerprints on the walls were too much to ignore. It was time to face the facts.
“House trolls,” I told my husband.
“Yes. Here.” I handed him the morning paper.
“Where’s the comics section?”
He looked for margarine to spread on his toast. “Are we out?”
He grunted his agreement. At last I had his attention. A man just isn’t right without a good breakfast and a virgin copy of the morning paper to start his day. “They’re grounded,” he said. When my husband makes this statement it’s final, but I protested anyway.
“Grounded? Do you know what that means? They’ll merely wallow in the rising filth in their rooms and I’ll be left to clean the entire house by myself.”
My husband looked pained. If house trolls can’t be trained with a good old-fashioned grounding what did I expect?
At dinner that night I issued the decree. “There will be no more television in this house until the house trolls are exterminated.”
“House trolls?” Five expectant faces looked my way.
“Yes. They seem to be taking over the house. They’ve trashed the bathroom, they’ve redecorated your bedrooms and I’m not very fond of the veneer of grape jelly on the walls.”
“Oh. That again.”
By that afternoon they were looking peaked. Three days later they were gasping for air. One week later, there was some semblance of orderliness to their rooms and they all had severe facial tics, but I held out.
“Mother! We can’t take it anymore! Please, please, dear Mother, please allow us just ONE commercial!” I sang the theme song to their favorite show, but stood my ground.
Three weeks later, they had acquired new habits, the house trolls had completely evacuated and at last I plugged in the third parent. Immediately the children began to regain a healthy color.
If parents wish to regain control of the house, there’s no better method then nixing the TV. Sure, they’ll be a lot of yelling and screaming and moaning about, but once you and your spouse get over it, you’ll realize it’s not so bad for the kids either.
The severe facial tics will decrease as time passes. Only three teachers commented on it.
LISA BARKER of Greenfield California is a syndicated humor columnist and mom of five. Her “Jelly Mom” column appears in several newspapers and on over thirty-five websites. Barker’s latest book is “Just Because Your Kids Drive You Insane ... Doesn't Mean You Are A Bad Parent!” See www.JellyMom.com for more information.
Wednesday, June 21, 2006
I took the older kids and my parents up to the Santa Cruz Beach & Boardwalk last weekend. Imagine me, 37 years old, on a merry-go-round and my parents STILL waving to me. Are we ever really a grown-up where our parents are concerned? :)
JD and I got to spend a lot of time together and he played an awesome game of miniature golf. Tomorrow it's summer school for him.
Might get the kids to do some baking tomorrow, unless, of course, they have plans to go swimming or run barefoot through the streets. Might take the kiddie pool out front and let Aiden play in it.
I DO have pics of Boo in her new wheelchair...just waiting on my dear husband to upload them to the computer.
Boo has settled into a bedtime routine again and even takes an hour nap in the day...which means her dad and I are getting to sleep again! Ahhhhh, precious zzzzzzs.
Then, we waited for an hour on the doctor.
We saw him for ten - twenty minutes. Told him Boo's history since she got the tube. He let me know what options are coming up regarding the feeding tube. They will either try to insert one like she has now farther down past her tummy (to help avoid reflux and therefore lessen her chance of choking to death) or insert it into the tummy and down from the outside, or insert it from the outside and down a bit lower into her intestines.One of those options we'll have to choose in the future. This is to help her not choke.
Gag reflex is good.
Basically, there's nothing that can be done if/when she chokes on her spit - that is, I suppose, if we don't hear her choking but we have an awesome baby monitor.
He advised that we get an advanced directive now for later. I wanted to ask how long he anticipated she had before we needed to worry about "the end" but just couldn' t do it and also all the kids were there. But having one is a good idea in case we ever need to call 911 or we get to the end.
Good news: I may have gotten better feeding tubes. They sold me six. No idea how much they cost. I'm sure the bill will find me.
Bad news: We left at noon and were held up until 5:30 with the appointment, the nutritionist and having Boo's blood drawn (she didn't even squirm or cry) so the kids were STARVING!
I treated them to McDonald's.
We got home at 8:30 PM - still very warm here, but in Greenfield we get a nice cool wind. :)
We go back in two months for a check up with the enterologist...which is also around the time we check in with her neurologist.
Tuesday, June 13, 2006
The picture above is me, but I don't drink coffee.
Thought the cap on Bec's tube was chewed off or missing. I have kid twerps and cat twerps. Anything is possible.
But, no. Mom in her state of sleep deprived delirium put the cap on backwards.
Add to the list of things taking my sanity down today...the 3-yr old dresses in Sunday clothes to go out in the backyard and make mud.
Later he decides to play in the sandbox. The one the cats use.
Lucky for me it was great material for a column.
Following are some updates. We almost lost her Sunday night over a week ago. At the end of the day we are all worn emotionally - just plain TIRED OUT. Even Boo is.
Monday - June 5, 2006
She's been having a lot of trouble with her diet - no fiber - so she has
sometimes been pretty sore and crampy. She also doesn't sleep through the night,
but last night looked like she would.
My Dh went to bed around ten so he could make the trip to INS early this
morning. I stayed up to make sure she went to bed okay and to check on her. At
11:30 I could hear that she was a little congested, but swallowing, so all
12:30 I'm passing her door and the cat and I stop suddenly. Then I hear
this noise like a grunt and know immediately that she's choking and not
breathing. So I rush in and take out the tube real quick thinking it may have
backed up into her throat/lungs. Turned her sideways and helped her clear her
throat so she could breathe. I finally figured out what happened. She can no
longer swallow and she was choking on her drool. She choked so hard she started
throwing up and then was choking on that. So I cleaned her up and she went right
back to sleep and I camped out on the floor next to her bed.
She choked again even on her side.
Okay. Now I have to make calls today and get people to do stuff for her
ASAP to help her out. I take sedating medication at night and can't do this
forever. It's taken me until 11:30AM now to be clear-headed enough to reinsert
the tube and feed her...and also be able to speak clearly on the phone.
So prayers to help us help Becca in this situation. I was telling Simon
it's stuff like this that upsets me. I'm ready for the illness and all its
stages. I'm ready for her death. But the sleep deprivation caught me by surprise
and the possibility of her choking to death and neither of us realizing it until
morning also caught me off guard. I'd stop taking my medication so I can stay
ready for her round the clock, but it wouldn't last long before the family would
be in serious trouble with me being unmedicated (I'm bi-polar).
I just need to get people on the phone hopping today. Thanks for your
prayers. AND THANK YOU BYZANTINE MOM for the AWESOME DINNER and DESSERT FROM HANNAH. Thank you also MaSNOWCa (all friends online) for the DELICIOUS ICE CREAM and the lovely roses! What a treat, ladies. Thank you!
UPDATE 1: I'm taking her to the pediatrician at 3:15PM PST (Monday, June 5)today for him to decide what the next step in care is for her because chooking on her saliva is too dangerous as is.
This is good, because I tried to put the tube in again and made her bleed. Supposedly no big deal because of the area and it happens sometimes, but that's the limit for me today. White flag. All in all, we're in good hands. I'll keep you posted.
UPDATE 2: I called her enterologist in Stanford. His nurse told me totake her to her local pediatrician for him to make the decisions about the next steps in her care.
He tried to put in a new nose tube, but it didn't work out. So I ended up putting in the old one. Easy as pie.
He DID give us a prescription for laxatives and suppositories (because she has no fiber in her diet).
I figured that we are basically on our own, so I stopped at a medical supply store and picked up a wedge pillow and some roll type pillows to help position her safely in bed.
Then, I stopped at Toys R Us for a baby monitor to help when I can't be in the room with her.
Still waiting to hear from the powers that be about the possibility of her choking on her saliva when she sleeps and what can be done for her.
UPDATE 3: One company was supplying us with Boo's nutritional needs. They also do medical supplies.
BUT when we got the tube put in, another company moved in on us and tried to take over. For a month, while we try to reach some sort of plateau in this new step for Boo (it's been constant stress) we've been using the stuff we were given. Pediasure WITHOUT fiber, so the poor thing hasn't been comfortable at times, syringes for everything and anything (unnecessary) two itty bitty packets of lubricant (necessary for reinserting a tube) and two extra feeding tubes - FOR A PREEMIE.
So now this medical supply outfit is a bit huffy that we aren't sticking with them. I can't wait to tell them in person how USELESS the supplies they gave me were and I plan on telling the insurance company because I'm not paying them squat. I believe what they did and the way they did it was unprofessional at the least and downright negligent at the most. What were we supposed to do for Boo without the right equipment??
Anyway, our original supplier is on the ball and working it all out. More phone calls to make.
We just got supplies from the Good Guys and Boo is well stocked with Pediasure with fiber, plus a very generous and loving soul gave us a juicer so I'm giving Boo some real fiber (found out later juice has no fiber). And I have been looking up herbs. I wonder if there is something out there that can help her body rid itself of the waste she can't rid herself that the cells produce.
Maybe nothing, but what's it going to hurt to try, within reason for her age and weight? I've narrowed it down to Siberian Gensing and garlic. Then some other thises and thats.