Sunday, December 30, 2007

Gimme A 'Q'

I'm all about a good quote. I try to change my daily quote, well, daily. There are so many great sayings by great authors. I loved my literature courses in college and tend to gravitate toward those "older" authors.

I have a giant wall in my living room. It's so big that our 9 foot Christmas tree could grow another 7 feet and it still wouldn't reach the ceiling. For years I've had this queen size quilt I made hanging there. Saturday I just got tired of looking at it and decided the wall needed a new face. So I used my new Cricut machine to cut out letters, put some sticker adhesive on the back and voila! A new and improved wall.

Saturday, December 29, 2007

Say What?

Last night we spent the evening at a friend's house to watch the big Beaver game. Of course, that's not why I go. I go so I can have adult conversation. I could care less about watching a football game. So we packed up the kids, the DVD player, the food, Legos and a couple toys for good measure. The whole point is to leave stuff so you can go back, right?

There were about 8 teenagers and then my three (8, 6 and 3), plus all the adults. The host and I were the only hearing adults. The rest were deaf or hard-of-hearing. I've been in the deaf community for 18+ years. But I still can't get used to how the deaf "talk straight". That means that they just say what's on their mind. It's not meant to be offensive, but when you don't grow up this way, it always feels weird to have someone say something to you that any normal hearing person would only think! Holland was getting pretty rambunctious - wrestling with his brother, rolling on the floor with his sister and basically running around in circles while doing sommersaults. One of the men looked at me and signed "maybe you should think about cutting out his sugar." Just matter-of-fact. Not meant to be insulting, but with everything that's going on with Holland, I hate to have the obvious pointed out to me. I notice it everyday. I rarely need help noticing everything he does. I told him it wasn't sugar and he looked shocked.

So the next time you're ready to accuse some mother of letting her kid run wild, just remember this story. It's not always under a parent's control how her child behaves. But it is under your control how you respond to it. We don't need any more reminding of how crazy it is.

Friday, December 28, 2007

microneurosurgeon (that's a mouthful)

Well, we finally had our last appointment with the microneurosurgeon today. I was hoping to come away with more answers, but ended up with more questions. She asked more extensive explanations of details that I couldn't even remember. Everything's become a blur when you answer questions over and over. Many questions I can't even answer because I don't know the family history of diseases.

She tested his reflexes, in which he's always shown a weakness. He has a pidgeon-toed walk and can't bend down to touch his toes bending from the waist. She showed me his x-ray and where the Spina Bifida was. Also during the exam, she noticed a slight bend in his spine. Can you believe it? She thinks he has sciolosis on top of all this! We were sent down to diagnostics and he had another x-ray done standing to view his spine. And he also had a CT scan to check for anything that might have been missed up til this point.

I asked her what would happen if we didn't do the surgery. She said his bowel problems would continue and we could just treat it with Miralax and some fiber. There is not a 100% test to diagnose tethered cord. Only through surgery will she know if the tightness of his spinal cord is a problem. There isn't even a guarantee that having the surgery would clear up the problem if it turns out to be tethered cord. She said he has so many of the symptoms of tethered cord (spina bifida; possible scoliosis; pidgeon toe walk; little or no reflexes; can't bend down; back pain; bowel/urination problems) that it's hard not to think that's what is causing all his problems.

So for now we are waiting to see what she finds out from the x-ray and CT we had done today.

Monday, December 24, 2007

Sunday, December 23, 2007

Deep Thoughts

Why do dogs like to hang out a car window, but can't stand it when you blow in their face?

Friday, December 21, 2007

The Itsy Bitsy Spider






Here is Egypt's newest friend. At first she was frightened, but I kept telling her it was a nice spider. This is as close as I could get her to the spider.









And this is Molly, my 16 year old cat. I'm surprised she actually sat still for this. Egypt was putting her doll blankets on her to keep her warm. A few years ago, the cat would have scratched your eyes out if you pulled a stunt like this. She's mellowed in her old age. Her sister Millicent was more forgiving. When Holland was not even 2, I asked him where the cat was and he signed "cold". Having no clue what this meant, he led me over to the refrigerator, and yes, the cat was sitting on the bottom shelf.

The roller coaster ride

It seems weird to post about a boy in a good mood, but it really is a big deal. We've been dealing with either depression or severe anger. Holland's meds have been changed so much, which I just hate. Our trip in March to Hawaii was brutal. He was so depressed on that trip, which sounds impossible to do. It continued like this for 5 or 6 months. Meds were changed again and then he seemed so out of control, angry and got very physical.

Over a year ago, we had tried Lithium, which is a pretty common drug for bipolar. But it gets tricky in children, because there have been so few studies with that age group. Basically drugs are given according to a person's weight, so meds for kids are usually just proportionately reduced. I had never seen such an improvement in his mood and demeanor. At some point we had blood work done and he had developed hyperthyroidism. Our doctor didn't feel it was worth the risk to deal with a thyroid problem, so we dropped the Lithium.

A few days ago we were going through another medication change and I asked about going back to Lithium. Doc asked if I really had seen that much improvement. Yes, I assured him, it was the biggest change I'd seen. He's been on it for 3 days at about 1/3 the dose he will be taking and I cannot believe the improvement. He's more himself. He was cracking jokes in the car today; he didn't get angry when his sister was poking him; he didn't come unglued when I told him he couldn't download a game on the computer. He almost seems more rational, if that's possible. We may even get to do Christmas Eve/Day this year without leaving early.

We still have to monitor his thyroid, but the doctor thinks if it becomes an issue, we'll treat it with meds. We may finally see an end to the ever-changing drug cocktail.

Thursday, December 20, 2007

Oops!

I've mailed out most of our Christmas cards. They went in batches because I kept getting interrupted and couldn't finish putting them together. Wonder why that is? My super-hero husband asked me where the cards were for his friends. I replied that I'd already mailed about half of them. It wasn't until I started addressing the other half that I realized I hadn't included his funny little letter. I made such a big deal about not wanting to include a letter. He's going to think I did this on purpose! Really, I didn't. I just keep getting distracted.

Friday, December 14, 2007

Doing a 180

Four months ago I couldn't even have pictured myself here. Romania was doing great with homeschooling and I loved our time together while Holland was at school. We picked our own curriculum, topics to study, extra activities and books to read. I'm about to throw all that out the window. I accepted the placement in the charter school. The only explanation I have is that God has opened this door that I have to walk through. I thought there was no way we would get in because it's such a small school. They never go over 22 students per class and there was only one 1st grade class. We have the remainder of the year to figure out if this is going to work. The other good thing about this opportunity is when Holland gets out of his special education placement, he's guaranteed a spot at this Charter school. They give preference to siblings, so they could both be going there.

It's going to be an enormous shift for me (and Romania as well - he won't get home until 4). I'm so used to making all the decisions about what he learns. I'm going to miss all the time I have with him. It wasn't as hard a decision with Holland because he had so many behavioral as well as academic issues to be addressed. There are going to be so many great opportunities for him at this school. We timed the drive this morning and saw this gigantic tee pee they were building right on the property. Every Friday is spent either on a field trip or working on some environmental science project.

I've come to the conclusion that two things will happen while the boys are at school: my house will finally be put in order and I will be able to exercise every morning. I figure walking a trail near my home two days a week and swimming the other three. Maybe I'll even clean those window toppers I've been avoiding for the past 8 years.

Thursday, December 13, 2007

The Wheels on the Bus Go Round and Round

This morning I got an email from this environmental school that I applied to for both the boys last year. If your child attended the first year (very new school), then they pretty much had a slot guaranteed. The rest of the openings were done in a lottery. We didn't get in, but Romania was pretty high up on the waiting list. Today we found out that Romania got in. I'm stumped as to what to do. Holland doesn't go a full day yet, so the bus schedule might be an issue since they are going in two different directions. I talked with Romania about it and he was excited to meet new friends and ride the bus. I think riding the bus was actually the higher priority.

Monday, December 10, 2007

A Day (actually a night) in the Life of Holland

I think I will have to return the video monitor I bought. I thought I was so brilliant to trade in my digital monitor for the video one. It has night vision so I'd be able to check on him in the dark. But if I can't turn up the volume because of static, the video is useless. Not only can he pick the lock on his door, but the enormous jingle bell wreath I hung on his door (Christmas decoration you know) didn't wake me up.

Here's what he did last night:
Picked the lock on his door and bypassed the jingle bell wreath.
Came downstairs, drank milk, ate walnuts and chocolate covered raisins.
Put in a Star Wars video.
Listened to my iPod.
Opened a new package of gum and took 4 packs.
Opened a new roll of Christmas wrapping paper, wrapped up videos, books and a hackey sack. Completed gifts with a bow and put under Christmas tree.
Opened a Bonsai Tree kit I bought from Scholastic and attempted to plant tree.
Took my Sidekick pager from my room and attempted to break the code to probably download more games. Found said pager in his bed this morning.

At this point I'd better check my phone bill for any suspicious calls to China.

Sunday, December 9, 2007

Pager Games - Round Two

We got the bill for my pager yesterday. Apparently putting a numbered password on it didn't stop Holland from downloading Sonic the Hedgehog three times. At first the man of the house asked me why there were $30 in phone call charges. I didn't think I actually called $30 worth. Then looking at the summary, we see there are charges for a game downloaded three times. And they were either at 3 or 4 in the morning. I had already had a lengthy conversation with t-mobile via the internet to remove charges from a previously downloaded game. I cannot call again and tell them that my impulsive 8 year-old keeps swiping my pager and downloading these games. Now I have to find $18 worth of chores for him to do in 32 degree weather. No, putting up Christmas lights would not be punishment (maybe for his dad).

Friday, December 7, 2007

Hurry up and Wait

Today was supposed to be the day that we met with the surgeon about the final diagnosis for Holland. I got a call on Wednesday from her secretary saying they needed to reschedule. We have already waited three months for this appointment so I was a little disappointed that we had to wait longer. But when you hear that the reason for the rescheduling is a little boy with a brain tumor, you stop and think how blessed you are. We are not dealing with brain cancer or tumors or a terminal illness. Holland most likely has an ailment that can be fixed with minor surgery.

On a lighter note, I got a call from Holland's school again. She usually starts the conversation with, "We had an interesting day today." This means that he did something they've never seen before. I'm convinced he's going to be a lawyer (or a white-collar criminal). He showed up with $16 in cash to distribute among his classmates. Where is he getting this? I don't have that kind of cash. I can only guess he swiped it from his rich brother. I ask her if they've ever had to say this kind of thing to any other students. No. Holland's the first. But at least he's not throwing chairs, pushing tables over or running out of the room. So I guess we can work on the white lies (ever seen "Larry Boy and the Fib from Outer Space? I guess it's time to review that movie again).

Wednesday, December 5, 2007

The Power of the Mighty Dollar

Today at school Holland tried to buy himself some stars. That doesn't sound too bad. Except he wanted to buy stars to be able to "buy" something from the class treasure box. Stars are earned for good behavior, but Holland figured he could purchase stars for $5. He actually had five dollars (I still don't know where he got that from. He spends his money before it's burned a hole in his pocket). I asked him about it at home.

"Can you ever buy stars with money at school?"
"No."
"Why did you try to today?"
"I was just trying to come up with something creative."

So, obviously money is his 'language of love'. He can remember that he gets $5 for a blood draw to check a Depakote level, but he can't remember to put underwear on everyday.

Tuesday, December 4, 2007

Things a Mom Doesn't Want to Hear

"You look like you have your hands full." said after person sees your children misbehaving

"Are they ALL yours?"

"Mom, does paint come out of carpet?"

"Mom, Egypt is changing her diaper again!"

"Why should we clean when it will just get messy again?" hint: not said by children

"I thought these were dirty so I put them in the laundry." said by child when asked to clean up room. Clothes were not dirty. Just hadn't found their way into a drawer. It's so much fun washing clean clothes.

Sunday, December 2, 2007

Don't Mop the Ceiling

Whenever there is a job to do around the house, I always think about mopping the ceiling. Since this only makes sense to about 3 other people, let me elaborate.

When I first got married, I lived in a small, but older house that had lath and plaster walls. They were very shiny and attracted lots of dirt. My sister was getting married and I decided to throw her a wedding shower. Anyone who plans a party knows it's not just getting the party stuff ready, you have a major overhaul cleaning of the house. On the day of the party I was in the kitchen getting last minute things ready when I looked up to the ceiling and noticed some dirt marks. Since I didn't have a step ladder handy, I just got my sponge mop wet and started to mop the ceiling. Big mistake. Huge. The dirt was actually the ceiling color. And I was now stuck with mopping the entire ceiling if I didn't want a big white streak mark in the middle.

Which brings me to the point of this post. I was just heading upstairs to go to bed (I'm trying not to go to bed at midnight anymore). I have terrible lighting in my room, which probably helps me ignore not just the clutter, but the dirt. I made these ruffle window toppers that are looking so sad and tired. I've been thinking about replacing them (which means new paint too, of course). There was this one part that keeps sagging, so I climbed up on the bed and started to fix the sag. I've decided not to mop the ceiling here. I couldn't believe how much dirt and dust had accumulated on that sag. Then I looked on either side of the sag and there was more! (Exactly how does dust acculumate on vertical objects?) So in the interest of keeping my sanity, I've decided that mopping the ceiling in this case will not benefit me one bit. I will not feel better if I wash those. But I will be wearing one of those dust masks to bed tonight.

Saturday, December 1, 2007

Doctor, help me! I fractured my English!

A woman rushed into the lobby of a hospital and shouted, "I use an IOU and my husband has had a bisectomy, but I still think I'm fragrant!" Ultimately, she became three centimeters diluted and went into contraptions. Her baby was born with its biblical cord wrapped around its arm, and she asked if she could have it circumscribed before leaving the hospital.

-A medley of medical malapropisms actually uttered by patients, compiled by Richard Lederer.

Night Light

Here's my new favorite product. Egypt has been fussing when I put her down for bed because she wants the little light on (too bright); I say no and then she asks for the big light (asking in the wrong order here). I was shopping on costco.com buying a video monitor for Holland (there's another post altogether) and saw these cute rechargeable night lights by Mobi. The price includes shipping and you get two of these night light pals. I saw them on Amazon for about $24 each. They have an AC adapter that plugs into the back, so there's no messing with little battery doors. They stay lit for 12 hours before needing another charge.

As soon as she saw it, she called it her "purple guy". I think it's so funny that she names everything. So the room can stay dark and you still get a nice glow when you check on the kids.
The costco.com price of $34.99 is good until December 10th.