Blogging about life and raising our five kids with Down syndrome.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Monday, November 30, 2009

What's your favorite?

What's your favorite family Christmas tradition? (or whatever holiday your family happens to celebrate this time of year! ;-)

This is really about Thanksgiving, but when I was a kid, the night before my aunt and uncle and their kids (who were like little brothers to me) would come over to chop up stuff for the dressing and other dishes. A few years ago my sister and her husband, along with Dean and I, started carrying on the tradition. We haven't done it for a couple of years now, and I sure do miss it! There was always a lot of silliness involved, and the chopping got done REALLY FAST because we'd have races. (Disclaimer: for the safety of your fingers, having races to see who can chop up stuff the fastest is not recommended!) My sister's signature dish is Brandied Sweet Potatoes, and...well...there was always a consequence for loosing a race.

At Christmas, my family does a gift game. Notice I did not say "exchange", but "game". We used to exchange names, but it always put pressure on some who maybe couldn't afford it that year, but didn't know that a whole month before when we drew names at Thanksgiving. Besides, there was that year every single person drew my sister's name.....

Anyway, each of the men bring a male gift, and each of the women bring a female gift. If someone can't afford it that year, they just don't bring a gift. So... Lets take the women. We put our wrapped gifts in the center of the room. Then we send around a pie tin with a pair of dice. If you roll doubles, you can pick a gift from the pile. If you already have a gift, and you roll doubles again, you can trade with someone else. Remember...we don't know what's in the box yet. We keep going until everyone has a gift, which only takes about 5 minutes.

Then the REAL fun begins! First, we open the gifts. Now that we can see what each other is holding, we set a timer for 7 minutes. The dice travel around the circle, and if you roll doubles you can make a forced trade with someone else. There always seems to be one coveted gift that everyone wants. We have a lot of fun with this game. No...really... we do! Once we're all done, we repeat the process for the guys. (which ends up sounding a lot like men watching a football game!)

So, what's your favorite holiday tradition?

Just because

Beware!

If you use Paypal, beware of the latest attempt at Phishing! This morning I received an email, supposedly from Paypal, saying someone had attempted to access my account, but had 3 failed attempts at the password. (most secure websites will lock your account if this happens.) and that my account was now suspended until I contacted paypal. I'm very familiar with phishing, and was immediately suspicious. I followed the link which brought me to what appeared to be Paypal's login page. It had the same type of ad, and really was identical. There was something *ever so slightly* different about the font though.

I opened a new window and put in paypal.com and pulled up a nearly identical page. All the links were there, everything, but the font was...again...just a tiny bit different. Then, at the very bottom where the "fine print" links were, there was one tiny link missing.

So, what's the point? How does this help someone? Well, if I had logged into the fake page, I would have been giving them my username and password, which would have then given them access to my paypal account and all my money.

Had I been someone unfamiliar with phishing, and paypal's security system, I would have logged onto the fake page. Had I not been suspicious in the first place, there is no way I would have noticed anything different between the pages. It was just one, tiny, four letter link in about 6 pt font that was missing.

I think about Dean's parents. They would have gone to the link right away, and logged into it. I remember a couple of years ago his dad called and said something to the effect of, "Yeah, I had to change our bank information. They sent me an email and they had everything wrong." NOOOOOOOOOO!!! We said, "Please tell us you didn't do it!" He said he hadn't yet, he was going to do it later that day. THANK GOD they hadn't done anything yet.

Anyway, beware. Paypal (or any other secure site) will never ask you to do something like send you an email asking you to change your password. The email I received looked legit. They weren't asking me for information, it was asking me to check my account activity.

The fog hath lifted!

For reasons unknown to me, for the past several years I've had trouble getting into the Christmas spirit. Well, it's not even that, it's more like, "I have no ambition to drag the Christmas boxes out of storage." No, I think it's even more than THAT! More like the, "I don't feel like cleaning only to mess it up again while decortating." kind of funk.

For many years, my personal tradition has been to have the tree up and decorated by Tyler's birthday (Dec. 3rd). There's a story behind this having to do with pregnancy and labor, but I'll save that for another post. Anyway, Angela's 1st Christmas she was 5 months old, and I was still walking around in the fog created by her various medical diagnoses that were being thrown at us every day. I did get the tree up, but not until about 2 weeks before Christmas. Late. I hate being late.

The next year Angela was crawling all over the place. Even though the boys begged every day, I just couldn't put the tree up. I knew the stress of keeping Angela away from it was more than I cared to deal with! LOL I finally put it up December 23rd, and, with many apologies to the boys, I took it down December 26th. Those 3 days were keeping Angela out of the tree were too much! Seriously.

The next year I was back on track though, and things were good! And they stayed good until about 4 years ago. I'm not really sure what happened. The tree got up, but usually late, and then it came down late too. (I'm pretty sure there is an unwritten rule that states the tree and all the other Christmas trimmings are to be back in storage by January 2nd!) One year the tree got put up, and the lights put on it, but the ornaments never made it onto the tree! How sad and pathetic is that? I didn't even have a good excuse as to why.

But this year...this year the funk is gone! Yep! Thanks to my neighbors, I've got the bug!

A couple weeks ago one neighbor got his outdoor lights up. Nothing out of the ordinary, it just looks pretty from up here on the hill. Angela noticed them right away. Then, last weekend, our other neighbor put his lights up as well.

That did it! I wanted COLOR outside! I ran to Walmart and got some icicle lights, only to get them home and discover you could only put 2 strands together. Half hour later I was back to Walmart returning them, and headed to Target instead. Good thing, as their lights were much less expensive for even more lights. I got them home, and before I even went into the house I started hanging them. Do you ever do stuff like that, and 1/2 way through the project realize you should have done it differently? Yeah, that's what I did. Oh well...I hung what I had, when Dean and I realized we needed 3 more strands to do what we *really* wanted to do. Again, nothing extravagant, just "better".

Later in the week I was at some store and found these solar light thingies that I thought would look great along the driveway. Cuz, you know, I like the runway effect. I brought them home, set them up, only to discover only four of the 12 I bought worked! Doggone it! This always happens to me. I decided to leave them where they were, find my receipt, and the next day I'd return them. Only I knew this would never happen because like always I kept forgetting to return them. Finally on Thursday I went to pull them up when I noticed a little red tag. Oh...look! I just needed to pull that little tag to activate them! DUH!

So yesterday Dean and I are at Home Depot. I have no clue what we went there for, but we ended up looking at Christmas stuff. They had this cute little potted tree thingy that I thought would look great on the front step. Only, it had 2 different prices on it. $63.00 and $32.00. That's a pretty big price difference. We looked down below at the boxes and couldn't find the right box to go with the description because it had yet another price on it. We called a clerk over and she said it was supposed to be $63, but because it was marked wrong we could have it for $32. COOL BEANS! Of course, it didn't occur to me until we got to the car that I really wanted TWO, so the front step could be balanced. LOL

Today Tyler and I were running errands (ok, we were out to pick up my latest craigslist find) and stopped at Home Depot because I wanted to see if they changed the price on that planter thingy from yesterday. No, I didn't get another, but I did get a really cute set of lights! Ok, really I got THREE sets to line the driveway. Yeah, the same place I put the solar thingies. They would have to come out. I came home and immediately started putting them up, and taking down the other things. I was 1/2 way through the job when I looked up and realized they'd look MUCH better in a different place, so I undid them, moved them, and reset everything.

Tonight I couldn't wait for it to get dark!

I still don't have the tree up, mostly because I'm afraid of the storage room, and what could happen to me in there while trying to get to the box with the tree. I'm trying to convince Dean we should just be a new, pre-lit artificial tree, but he said something to the effect of, "We can't just buy a new tree every year because the storage room is packed and you don't feel like going in there." Well, it sounds like a good reason to me, but whatever.....Thankfully TYLER has been here since Thursday, and he will do almost anything for me so tomorrow I'm going to beg HIM to dig the tree box out.

Oh Tyler.......

Getting into gear...again!

Last spring I started working out at the Y between 3-5 days per week, and I loved it. In May I even joined a mom's soccer group. It kicked my butt, but I still loved it!

When summer came, with Angela home it was more difficult to get to my favorite classes at the Y. Then in August I had major surgery (100% elective) that took me out of the circuit for awhile. I started back in September, but Angela's school schedule combined with MY school schedule hasn't been conducive to me getting back to working out.

The beginning of November we increased Angela's day by 30 minutes, and it's gone well. Today we're increasing by another 30 minutes. It doesn't seem like much, I know (she's still 90 minutes away from a full day.) but it's *just* enough time for me to get to my Y classes!

I have learned that sometimes it's hard to get myself out the door, but with the friendships I'd made at classes came a little bit of accountability. If I missed a class, people wanted to know where I was! Unfortunately I've been gone long enough that they've stopped asking. :-( And, I've gotten lazy! But, for the next few weeks, I have a little push! Because of the bussing schedule, the transportation department needed to pick Angela up too early for her, or too late to make much of a difference in her day, so I agreed to drive her. That means I'll be dropping her off at school 20 minutes before my Y classes start, which is PERFECT! That gets me up and moving, and less likely to bail on my workout. LOL

So here I go! Today is the first day of my future, right?

Sunday, November 29, 2009

Rules of Life


1. Never, under any circumstances, take a sleeping pill and a laxative on the same night.

2. Don’t worry about what people think, they don’t do it very often.

3. Going to church doesn’t make you a Christian anymore than standing in a garage makes you a car.

4. Artificial intelligence is no match for natural stupidity.

5. If you must choose between two evils, pick the one you’ve never tried before.

6. My idea of housework is to sweep the room with a glance.

7. Not one shred of evidence supports the notion that life is serious.

8. A person who is nice to you but rude to the waiter, is not a nice person.

9. For every action, there is an equal and opposite government program.

10. If you look like your passport picture, you probably need the trip.

11. Bills travel through the mail at twice the speed of checks.

12. A conscience is what hurts when all of your other parts feel so good.

13. Eat well, stay fit, die anyway.

1 4. Men are from earth. Women are from earth. Deal with it.

15. No man has ever been shot while doing the dishes.

16. A balanced diet is a muffin in each hand.

17. Middle age is when broadness of the mind and narrowness of the waist change places.

18. Opportunities always look bigger going than coming.

19. Junk is something you’ve kept for years and throw away three weeks before you need it.

20. There is always one more imbecile than you counted on.

21. Experience is a wonderful thing. It enables you to recognize a mistake when you make it again.

22. By the time you can make ends meet, they move the ends.

23. Thou shalt not weigh more than thy refrigerator.

24. Someone who thinks logically provides nice contrast to the real world.

25. It ain’t the jeans that make your butt look fat.

26. If you had to identify in one word the reason why the human race has not achieved it’s full potential, that word would be ‘meetings’.

27. There is a very fine line between ‘hobby’ and ‘mental illness.’

28. People who want to share their religious views with you almost never want you to share yours with them.

29. You should not confuse your career with your life.

30. Nobody cares if you can’t dance well. Just get up and dance.

31. Never lick a steak knife.

32. The most destructive force in the universe is gossip.

33. You will never find anybody who can give you a clear and compelling reason why we observe daylight savings time.

34. You should never say anything to a woman that even remotely suggests that you think she’s pregnant unless you can see an actual baby emerging from her at that moment.

35. The one thing that unites all human beings, regardless of age, gender, religion, economic status or ethnic background, is that deep down inside we ALL believe we are good drivers.

36. Your friends love you anyway.

Two more weeks

Just two more weeks before we head to Boston, and it couldn't come at a better time. Dean and I have both noticed that Angela's swallowing has gotten more difficult. Weds morning before school she had something stuck (and I can't, for the life of me, remember what she was eating.) She ended up drinking 3 LARGE glasses of orange juice...one right after the other....to get her esophagus cleared. She would take several big gulps, the she'd stop and would make the throat-clearing type noise that she does. (that I can't duplicate, but it's not what you and I do!) Only to start guzzling her juice again. All for one or two bites of food.

It is awful to watch your kid go through so much pain and discomfort to do what she needs to do in order to survive....EAT! And yet, she never complains. I'm sure it's because she doesn't know any different. She doesn't know it's not supposed to hurt to eat. Needless to say, I can't wait to get to Boston!

I have the itinerary for her time at Boston children's. We'll arrive in Boston on the 13th. We're lucky that we're arriving in town early in the day, so we'll have the afternoon and evening to get together with some friends there. Some are my downsyn friends who we'll be meeting for the first time. I'm hoping we get a hotel with a pool so we can just have a pool party. Wouldn't that be fun? Not only would it be fun, but a good way to spend Angela's last night before a very difficult week. Now, if I could just loose 35 pounds between now and then. LOL

Then on the 14th we arrive at the hospital bright and early at 7:00 a.m. to meet with the anesthesiologist in preparation for later in the week. Fortunately Angela has never had any trouble with anesthesia, so I don't have any worries about this. At 10:00 she'll have an Upper GI and cookie swallow test (the same ones we did at Mayo last spring.) Then at 3:00 we'll be meeting with Dr. Nurko, the pediatric GI specialist. We're scheduled for a 90 minute consult with him (I'll be bringing the DVD player and a movie Angela has never seen! LOL) Then we're done for the day!

On the 15th she'll have an endoscopy with biopsies, and have the manometry probe placed in her esophagus. I'm not sure how long that stays in place, but she does have to eat with it in so they can see how well her esophagus contracts. (Our specialists here say little to none.) Once that test is done, we're done for the day so we'll have time to see some of the sights of Boston.

On the 16th she's on the schedule for another endoscopy, this time with dilation. This is where they try to dilate her esophagus to make it bigger. I'm pretty sure this is a "schedule it, because we can always cancel it" type of situation, hoping that Dilation will be the fix she needs! Once that procedure is done she'll stay overnight in the hospital to make sure she's swallowing ok, and that it did, indeed, help her. If it doesn't work, I'm not sure what comes next.

We'll scheduled to be on a flight home early on the 18th. I think it's going to be a long week! I'm not sure which part Angela is most excited for, sleeping at the hospital (without Mom because I've been ordered by her highness to sleep at the hotel! LOL) or the flights to and from Boston! LOL I've never met a kid excited about the hospital before. I guess that should be a good testament to the Children's Hospitals and Clinics system here in the Twin Cities. Obviously Angela is very comfortable with the hospital. She's had plenty of unpleasant experiences and surgeries, so their other services must far overshadow the bad stuff!






Saturday, November 28, 2009

Fun with Dogs

I think training other people's dogs is one of my favorite things to do. Most people who have me come do so for what to me (and my trainer friends) are minor training issues that are just issues of how to teach your dog to behave in the house. Sometimes it's pack management, and how to deal with multiple dogs. I don't deal with aggressive dogs, instead deferring to a canine behaviorist. But those basic issues are fun to train because 1) they're super easy but 2) the results are dramatic, and 3) people think you just worked magic on their dog when really all you did is show them a little bit about how their dog thinks.

Last year for Christmas a friend of mine bought training gift certificates from me, and yesterday my first opportunity to work with them. This is an extended family where everyone has a dog, and they frequently all come together, dogs and all, into one house for holidays and other family events. So when I went last night, there were four dogs to work with. It was really more "pack management" that I was dealing, but I did break it down to individual time with each dog to work on their number one problem....THE DOOR!
How many of you have a problem with your dog either going nuts at the door, or charging the door, or, jumping all over the people who just walked in? This pack has all of that going on.
It was a lot of fun to work with these guys. It's always interesting to see the individual differences among the dogs. What worked for 3 did not work for the Senior dog who's had 8 years of doing things one way. But, by the time I left 2 hours later, I was able to have people ring the doorbell without dogs going insane, and to go to the door by myself without all the dogs on my heals trying to come along with me. They have some practicing to do before I go back, and then we'll be addressing the next problems: Barking and sneak attacks on the old dog.

I didn't do anything "magical", it's just a matter of learning how your dog thinks, and WHY they do what they do. If you'd like to read a good training blog, my mentor (And BOSS!) Deb Schneider has finally joined the blogosphere!

Wednesday, November 25, 2009

soft and striped

Note: for those who don't know, Angela is OBSESSED with stripes. Weather it be on shirts, or pants, or jackets, stripes are best. Did you know the best stripes are on boys rugby shirts? Who knew!? LOL One night about a year ago we were eating at Old Chicago. A server (not ours) walked past our table a couple of times, and happened to be wearing a striped shirt. Angela eyed him every time he walked past. Finally he was at the table next to us, when Angela reached out and touched his sleeve like she was admiring a fine rose. "Oooo...Nice stripes!" and got a smile of satisfaction on her face. And at our house, our most comfortable clothes are referred to as "soft clothes". You know, your favorite comfy pajamas, or maybe sweats? Whatever it is, it's elastic waisted and cozy comfy. Anyway, here's the conversation she and I had last night.

Me: Angela, in 2 more weeks we leave for Boston!
Angela: Boston? YAY! We're going to Boston. Children's Hospital, right?
Me: Right, we're going to the Children's hospital.
Angela: You drop me off, ok?
Me: Well I can't just "drop you off", but if you want I'll stay at the hotel at night and you can sleep at the hospital.
Angela: YAY! You drop me off! (seriously? What kid wants to be "dropped off" at the hospital?

long pause......

Angela: I need new stripes.
Me: Why do you need new stripes? You just got a new shirt last week. No more stripes for awhile.
Angela: I need new stripes...for the hospital. Soft stripes.
Me: So you want new soft stripes to for at the hospital?
Angela: Yep! Lots of stripes. (I'm not sure if she meant she needs lots of pairs, or one pair with lots of stripes! LOL)

So Angela and I will go shopping in the next week or so, for "just right" soft stripes. I hope girls striped pj's aren't hard to find! I think we may end up in the boy section yet again. Oh well, that's where all her favorites have come from anyway. LOL I'm thinking button-up, since she'll have leads on some of the time, and button up will make for easier access to those. So, button up, striped soft pajamas.......the search is on!




Tuesday, November 24, 2009

I know THE REAL Santa!

If you weren't reading here last year, then you don't know this fact. I know THE REAL Santa Claus! No, really! I met him just one year ago while doing a very long-run performance in Anoka. (seriously, I think we had 19 performances. It was LONG!) That's where I met him. Yeah, we're tight now, me and him. I know all kinds of secret thing about his place up north! Not tell'in though, so don't ask. And, because of my vow to secrecy, he helped me with a project, and I was able to video record him sending a personal message to my friend Shelley's kids.

Well, Santa just emailed me today, to let me know that he, along with Prancer, are back in town doing some pre-Christmas visits. (Rudolph is still resting up. He has a bit of a cold, and his nose doesn't shine quite as bright when he's all stuffed up, so he's at home using his Nettie pot.)
If you're in the twin cities area, and want to know his schedule, just drop me a note and I'll let you know where he is. In the meantime, here's Angela's visit with him last year. (Holy Cow, I cannot believe how much she's changed in the past year!!!!)


Monday, November 23, 2009

Do you do it?

Do you, huh? Do you do Black Friday?

NOT ME! Not on your LIFE! My email box is filling with "Black Friday Online" deals. All for cheap, all with free shipping. So, I'll sit on the couch, in my "soft clothes" (what we call pajamas around here) and shop to my hearts content ONLINE, while the rest of you are out battling each other for the last of whatever the hot item is this year! LOL

It only takes ONE

Impending something

My blog post title today says it all. I don't feel a sense of impending doom, but it's close to that. All is not at rest in my soul.

I'm very worried about this trip to Boston. It seems every time we see a new specialist we find out things are worse than we thought, and I expect the Boston testing will end up no different.

Let me put this into perspective a bit. Achalasia, which is the name for a lack of paristalsis in the esophagus along with a malfunctioning LES and the subsequent stretching of the esophagus that comes with it, is rare. Fewer than 1/100,000 adults have it. Of those who have it a small percentage need surgery for it. The rest manage with dietary changes and endoscopic dilations. I have found a few blogs, and a list serve for people with Achalasia. There are a couple of parents of teens on there.

But the type of Achalasia Angela has, Cricopharyngeal Achalasia, is even more rare. This happens at the TOP of the esophagus, causing food to get stuck right in front of the airway. ( The fact that Angela is still alive is pretty much a miracle. The fact that her lungs haven't been severely damaged by daily aspiration is nothing less than a miracle.) I have found MENTION of C.A. in reports online. And I have found mention of it in studies. I have found descriptions of it on medical journal sites. I have yet to find someone who actually HAS it. Those of you who know me, know that if it's to be found, I will find it! I have spent countless hours rooting around the internet and I'm just not finding these people!

I have not gone into all the details here about the possibilities for Angela. I'm just not claiming those things for her, and I prefer to live believing a less-invasive option will help her. Until the doctor tells me something different, I'm going to keep my rose-colored glasses on.

And yet, how can I ignore the possibilities? So, I'll lay it all out here on the table.

First, if the problem is found to be *just* the UES (upper esophageal sphincter ), then while we're in Boston she'll have either a myotomy (removal of that muscle) or she'll have it dilated and injected with botox to help it relax. This is the outcome we're praying for!

If the problem is found to be with the vagus nerve, then we have bigger problems. The risk of Angela developing Barretts Esophagus (cancer of the esophagus) is extremely high. The fact that Angela's esophagus is just completely slack and really does *nothing* is of huge concern. If myotomy (separation of the muscle) isn't an option for her, eventually her esophagus will need to be removed.

Yes, you read that right.

Some people who have their esophagus removed have it replaced with a section of their own small intestine. Some just have their esophagus shortened, stretching the fundus, or top part of the stomach up to meet it. But in Angela's case, it would be her ENTIRE esophagus. And, given her history of poor wound healing, this is just NOT something she could tolerate. Not just the removal part, but the putting back together of various bits and pieces! Her scarring abilities are crappy, to say the least. Her surgeon here, who I absolutely adore, said he'd never want to touch her again unless there were no other option. Her last round of surgeries 6 years ago, which should have been a one-week stay in the hospital, landed her there for four and a half months!

So, when you remove the esophagus, how do you eat? Well...that all depends upon how things are put back together! Some people, once everything is reconnected, are able to eat and are pain free for the first time in their lives! It can be a real blessing to have it removed or shortened. Some people end up using a gtube instead. In Angela's case, since using her own intestine really isn't an option, she would end up on a gtube. THAT doesn't scare me, since she's had a gtube before. And really, she's old enough she could do most of the gtube stuff herself now. The problem, once again, goes back to wound healing. When she did have her gtube before, the stoma kept breaking down and stretching out. Pretty soon it couldn't hold a tube in place and every couple of days we'd have to take it out and let it shrink down a bit. More than anything it was just a pain in the ass to deal with. But, maybe now that she's older, things would be different??? I don't know.

Have you ever seen Angela eat? Have you seen her enjoy every last morsel of a plate of french fries? Have you seen her chug a root beer? Have you seen her at Applebees (or any restaurant for that matter) and seen her in heaven with food? It's not something I want to take away from her.

So, that's what I laid awake thinking about all night. All these things coming up. What will they find, and how will they fix it? I'm also dreading that Dean isn't going along to Boston. I don't want to be alone if they give me bad news. It will be up to me to stay composed with Angela sitting there, and I just know I won't be able to do that.

............sigh.............

Sunday, November 22, 2009

Fundraiser

My good friend Kathie is hosting a one week fundraiser for my upcoming Bulgaria trip. If you're interested in more information, please contact her directly at Kathiebrinkman@marykay.com

Saturday, November 21, 2009

shhhhhhh

I'm trying to get Dean hooked on Sudoku so I can get my homework done.

Friday, November 20, 2009

What to do on a Friday night

Need a little smile? Just call the Nestle Crunch Hotline at 1-800-295-0051. When you are asked if you want to continue in English or Spanish, just wait quietly for about 10 seconds and you will smile. Promise! (if you comment on this after listening, don't give away the surprise...) keep going and press 4 it gets even better...

Go on and call... you know you want to! :)
(thanks Renee!)

Tuesday, November 17, 2009

Movie Review: The Blind Side


Yep, I got to see it TWO DAYS before you! HA!

Yesterday Tyler called to tell me he'd won two tickets from a local radio station to an early screening. Dean is out of town, and I didn't have any luck finding someone to take care of Angela, so I told Tyler we'd come get him (he had no other way to get there) and he could take his sister to the movie and I'd hang out at the mall while they were being entertained. (how sad for me, time at the mall without a child...booo hoooo!)

The station recommended he arrive by 6:30 for the movie to start at 7:30, as seating is first come/first serve. (you know, everyone gets a seat, but WHERE you sit is the question!) I had to drive 30 miles to Anoka to pick him up, then back down to Edina for the movie. Traffic is ALWAYS horrible so I allowed plenty of time. So much that we arrived at the mall at 5:30, and there were already a few people lined up! Oh well, we were going to go get something to eat first. When we came back at 6:30 the line was HUGE! Like, a couple hundred people huge.

Since there was an hour to wait, I decided to hang around, as I didn't think Tyler would be able to manage Angela in line if she got carried away. Mind you, she's usually in bed for the night between 7:30-8:00! So, I was going to stick around until they got into the movie and then I'd go shopping sit by myself in the mall, bored out of my mind for 2 hours.

Pretty soon there were another couple hundred people in line behind us, and then the theater managers showed up to shift the line around, causing some people to get a little anxious that the might loose their spot in line. I turned to to the group of young women behind us, and said, "Well, you're really one more person further ahead in line, because I'm not seeing the movie."

They looked at me, "Why aren't you seeing it?"

"Well, my son won two tickets, so he's going to take his sister. I'm just keeping them company in line until the movie starts."

The woman standing right next to me said, "I have an extra ticket. One of my friends wasn't able to come." and she handed me her pass!

Ok, out of the 400 or so people in line, we just happen to be standing next to the one who has an extra pass to the movie EVERYONE wants to see????

THANK YOU LAURA WONG!!!!

Onto the movie review.....

This is the best movie of the year. There is not one thing wrong with this movie. Not one thing. You will laugh, you will cheer, you will be shocked, and for SURE you will cry.

And THAT, my friends, is all I'm going to say about it.

Oh, what about the acting, you ask? It is SUPERB. Every single person in this movie better be getting some kind of award!

Scheduling issues

As you know, we've been waiting and waiting for notification of Angela's appointment in Boston, which finally came yesterday. We can't really be picky about the dates!

Guess what? We'll be in Boston when I'm supposed to be taking finals! GAH! Needless to say, I have some rearranging of my finals schedule to figure out!

Neurology Update

It's a good thing Angela's neurologist's office does a reminder call a couple days before your appointment. I didn't even realize we had one scheduled for today until they did. (probably because I didn't have my blackberry with me when I scheduled it, so it just never got written down.)

Anyway....

A couple months ago we tried dropping one of Angela's meds, and it didn't go so well, so we put her back on it. When I mentioned that to the neuro today he kind of chuckled and said something to the effect of "Yeah, that doesn't usually go well with that drug."

The seizure med Angela is on (Depakote) combined with Risperdal has caused her to gain a lot of weight. It's funny, because 4 years ago, when Angela was very UNDERweight, our developmental ped said, "She probably always will be. It seems most kids with DS are either under or over weight, with no middle ground. There are some, but not very many." Just a couple months later we added Risperdal, and within weeks Angela had gained....are you read?....23 pounds! In the past 4 years she has gained 65 pounds. That is alot of weight for one little kid to gain. On the DS growth chart this puts her at 50% for height, but 80% for weight.

So, one of the things the neuro mentioned today was changing her seizure meds. She's gained additional weight (around 5 pounds) but she hasn't gotten any taller. He suggested we change her seizure meds for Topamax. It usually 1) controls seizures 2) Can help with aggression 3) helps with headaches 4) weight loss. He said some kids loose 5-10 pounds on it. That would put Angela at a really nice weight.

The only drawback is some kids can get really "spacey" on this drug. We have no idea if Angela will unless we try it, and then we'll have to see if she's TOO spacey, or if it's tolerable.

Now we start the several week process of adding the new drug and dropping the old. Just in time for Boston. How does it always work out this way?

Monday, November 16, 2009

For Your Viewing pleasure

In case you need help with your smiler this morning, this should do it.

Got our dates!

Angela and I will be in Boston from December 13-18th. That'll be here before we know it! I wish Dean could come along. We just can't swing airfare for him with Christmas here. Well, that and he doesn't think he can take any time off work. There is that I guess.

So, we're headed to Boston!

Sunday, November 15, 2009

So confused!

So the other night I was coming home from school. Because I was bored I'm a considerate wife, I called to let Dean know I was on my way home.

Ring ring

Dean: "Oh cool!!!"
Me: "Hi. What? I'm cool? Thanks, but I knew that."
D: "No. There's this thing."
M: "No, I'm not cool? Thanks a lot. What thing?"
D: "On the TV. When the phone rang, this thing popped up, and said it was you calling. Like caller ID on the TV."
M: "When did you order that? How much is that?"
D: "I didn't order that. Did you order that?"
M: "Why would I order that?"
D: "Well lets keep it, it's cool."

Fast forward to today. Dean was gone making a Home Depot run, Angela was watching a movie and I was on the laptop.

Ring ring

Angela: "Oh no! My movie! What happened?" (Screamed with panic, cuz the world will end if her picture is somehow interfered with.)

I looked up to see me on the TV screen. Not "ME", but "Leah S.", along with my phone number.

How could this be? I was so confused. The thingie disappeared, so I couldn't tell was it the home number or my cell? And how could I be calling when I'm sitting here on the laptop? Wait, it can't be the house number, because that's the phone that's ringing. Are you confused? I was so confused.

Finally, in a moment of clarity, I picked up the house phone.

M: "Hello?"
D: "Hi honey."
Me: "What the heck is going on? I'm on the caller ID."
D: "Um...honey? That's because I'm on your cell phone. You left it in the car."

Now, this may all seem really stupid to you, and I guess it probably is. But really, it was kind of....ok it was dumb.


How it Came to Be

Just one mom.

Just one mom, moved by God, and by her own son with Down syndrome. That's how it all started. Please watch this video. Watch the WHOLE thing! Don't turn your back. These kids can't turn away from their lives. They must endure a love-less life until someone comes for them. If nobody comes, they will endure starvation, dehydration, and sometimes hypothermia until they just can't take any more.

Not everyone is in a position to adopt, but most are in a position to give SOMETHING. There is no shortage of families to adopt these kids, only a shortage of funds.

Lilly!


Grab This Button
You HAVE to click on Lily's sweet face above, and read the story of how her waiting family came to choose her. It is a story that will give you the chills. When you read it, you KNOW this is God ordained!

I've been following Michelle's family blog for a long time now, and I'm so excited to hear they've decided to adopt!

Saturday, November 14, 2009

Praise the Lord!

Do you remember my post a few days ago, about little Lera? She was literally DAYS from being transferred to an institution, where she would quickly deteriorate, and eventually die. Never knowing the love of a family. A mother's love whispered in her ear, or a lullaby at night. The only thing to save her from this fate is if someone came forward and made a commitment to adopt her.

I'm thrilled to announce that Lera has a family!!!! Meet Lera's new family! Then, follow along on their journey over the next few months as they work to bring Lera home. Lera's family has 4 biological children, which includes a set of twins. One has DS, and the other does not. They know from experience that raising a child with DS is not the curse some doctors try to convince you of. Instead it is a blessing, and a gift.

Friday, November 13, 2009

Movie Review: Paranormal Activity

First of all, I have to say I don't usually watch movies like this. I just plain don't like to be scared, mostly because I'm scared for days. And, we have "stuff" that happens in our house.

So, Dean and I wanted to see "Precious", but it's only open in select theaters, none of them near us. We looked at our other choices, and Dean really wanted to see Paranormal. I figured I could always hide my face in my sweater if need be.

The movie wasn't great, but it wasn't bad. I would give it one thumb up out of 2. And, I probably won't sleep tonight, or several nights.

The Blind Side

Oh, this movie opens next week on the 20th. I can hardly wait to see it! (though I think I'm going to bring an entire box of tissues with me! Just the trailer makes me tear up.) I hope this movie opens more hearts to adoption.

Got Sox?

My friend Lynda, over at Sox that Rock! is having a sale! If you have a girl who loves all things girly, go have a look! I really want Angela to be little all over again just so I can go buy a bunch of Rock'in sox! (But if you know Angela, you know that she is all about Star Wars, Cops and Robbers, and all other BOY things!) Anyway, go get yourself some socks!

Thursday, November 12, 2009

High Def. is NOT your friend!


If you grew up here in the Twin Cities, and you're over...mmm...30 years old, then you might have grown up watching Cyndy Brucato on Channel 5.

I have always loved Cyndy, and when she came back on the air a couple years ago, I was glad to see her. Except that I was seeing more of her than I really wanted to see. I'm sure some of you have noticed that HD isn't very forgiving! (I tried unsuccessfully to find a picture. I'll try to get a screen shot.)

I haven't watched the news for awhile (I get most of my news online) and tonight flipped on Ch 5, to find that C.B. has a new look. I like her new hair.

But the rest of her? Oh Cyndy, I'm so sorry. I know you must see the clips and wonder "What happened?" That darn HD camera has you looking too tired, too artificially lifted, and made up. I'd love to meet you off camera, because I know you're a beautiful person, and that darn camera has you looking hideous. I also know it's tough to compete in the newscaster field against those 30 somethings. Like Leah McClean. (Dean has a secret crush on Leah, and was a little disappointed when my brother didn't introduce him to her at the State Fair. LOL)

I love you Cyndy, but High Def does not.

Just messing around

I must be hormonal, because I feel the need to change things. You know, rearrange furniture, paint the house, and change my blog layout! LOL So, if you're on reader, take a look! If you're working on an adoption and have a button, let me know and I'll add it to my sidebar!

More waiting

So the GI office in Boston is open today. But the people I need to talk to are out....until Monday!


Wednesday, November 11, 2009

....sigh....

Ok, so I am the least patient person I know. Yesterday I called Boston Children's and was told, "The Dr. PROMISED me he'd have the appointment dates on my desk TONIGHT before he leaves for a national conference. I'll be able to call you tonight or tomorrow morning with your appointment date."

Then, early this morning, I had a dream that our appointment is next week on Thursday. I woke with adrenaline-induced shakes, then realized I'd been dreaming. (I hate that!)

But I never got a call last night. And now it's today, and it's no longer morning in Boston. So, I called! And they're CLOSED today because of the holiday. Why didn't the secretary tell me that yesterday (my kid is in school, why isn't the clinic open???) So, I wonder if I'll EVER get called?

Tuesday, November 10, 2009

Run for the Hills!

Apparently life at school is too boring for Angela! She's become very skilled at spicing things up a bit.

Yesterday she had an AWESOME day at school. Her very last class is adaptive phy. ed. and since it's absolutely beautiful here right now, they went outside to play kickball.

But as with all things, the eventually the fun has to end. Angela wasn't thrilled that kickball was over for the day, so she did what any kid would do when they're not ready to be done...she took off!

Near the ball fields of her school is a series of bike trails. If you follow the right one it'll bring you to an elementary school about 1/2 mile away. So Angela took off up the trail (which is all uphill) with her classroom aid trying desperately to keep up! Her phy. ed. teacher got the other kids back to their classrooms and then he headed up the trail as well. In the meantime, school called me since A) Angela had now missed the bus to come home and B) they couldn't get her to come back. She'd found her way to the ball fields for that school, plopped herself down on a bench, and there she stayed. She wasn't budging!

So I showed up, and her Special Ed. teacher and I walked the same route Angela took. Never again will she be able to tell me she's "too tired" to walk a couple of blocks up our street! Not only that, but where she went is ALL uphill!

Anyway, they brought me to where she was sitting. Here's where the tricky part comes in. When dealing with a kid like Angela, how and what you say is critically important to A) getting her to move and b) not getting swung at. Better to wait and discuss the issue later when you're in a different environment (and not almost a mile away from your car!) I walked up to her, took her hand and in a calm, low tone said, "Let's go." She took my hand and willingly walked with me. I glanced at the school staff (yeah, including me there were now FOUR adults there with this one kid!) were looking at me like, "No way!" because she came with me so willingly, yet was swinging at them.

Angela's aid that day, the original one to go chasing after her, has miffed. The teacher has tried explaining that she can't take it personally. That it doesn't matter WHO you are, sometimes she just DOES STUFF! Also, that Dean and I get plenty of it at home as well. Also, this isn't new for Angela. Her last 2 years in elementary school she wasn't allowed outside recess because she was running away. (and got quite far a couple of times, with school staff on her heels! Finally she was caught by the school principal who had to head her off at the pass in his car! LOL) I laugh, because it's all I can do. I can just imagine the wheels in Angela's head turning, and the glint in her eye as she sees the opportunity to bolt. And of course, there is the thrill of the chase!
I do have to say though, whoever works with Angela needs to be IN SHAPE! You just don't know when you're going to have a game of chase going on.

You might think, "Well, what if they don't chase her? It's not fun if nobody is chasing." Which, with any other kid is probably true. But we've tried it with Angela, and it doesn't work. She just keeps going until she's too tired to run anymore (and we've found a 3/4 of a mile is about her limit! LOL) She also doesn't care about busy streets, and is very vulnerable in a crowd of strangers. She UNDERSTANDS about busy streets, but she uses them as a threat, "I'll run into that street!" and we just don't know that she won't!

She is such a smart kid! I often wonder where she'd be if she didn't have all this behavioral stuff going on. She's so very capable, but the behaviors really hold her back. Unfortunately there isn't much we can do for them (and we've TRIED, with many professionals involved, for YEARS!)

So, we look at the good things. She had a GREAT day at school yesterday. She just didn't want Kickball to end.

Today is swimming. I've had a horrible time getting her to go lately, but we've now come up with a new angle, and she's very excited about it! She should be back to swimming her laps several days a week now!

Prayers for Dane


Meet Dane


Little Dane is in an orphanage in Serbia. Dane has a family waiting for him, working diligently to get all their paperwork done to bring him home. Unfortunately, the officials from his orphanage have decided, since he is developmentally delayed, to remove him from the adoption registry. That means he would no longer be available for adoption, and once his 5th birthday rolls around (some countries it's their 4th birthday) he'll be transferred to an institution. You know, those images of children tied in cribs that I've posted several times? Yeah, those same institutions will be Dane's fate! Dane's waiting parents have written a letter to the officials there, pleading for them to let them bring Dane home. That Dane can have a QUALITY LIFE here. That with the love of a family he will thrive!

Please pray that the officials handling Dane's case can see that EVERY child deserves a family. That EVERY child has value. That some people REALLY DO WANT to parent a child like Dane!!!

Monday, November 09, 2009

Still no news


We still don't have an appointment date at Boston Children's. I was really hoping to hear something on Friday, but it has come and gone, hasn't it?

Apparently the doctors there bring each case before a committee (which means a couple times per week) At that time the review the case, come up with a treatment plan, and prioritize the patients based on the current medical status. I do know the letter written by the specialist here in MN said that Angela needed to be seen on an emergency basis.

At least tomorrow (which is really "today" according to my clock) will find my very busy and without time to sit and wait for a phone call! Angela has an orthodontist appointment, then I'll drop her off and school. From there I have school for me (and take a huge anatomy test!), and teaching canine obedience later in the evening.

Speaking of anatomy...I've been studying for this test, and finally gave up about an hour ago. I guess if I don't know it at this point, I just plain don't know it! I also have to re-take one section from the previous test, and to be honest, I don't have A CLUE what was on it. LOL I sure hope my guessing skills are right on!

Sunday, November 08, 2009

Maclaren stroller recall


If you use a Maclaren stroller, there has been a recall. The company has opted for a massive voluntary recall of all Maclaren strollers produced between 1999 and 2009, due to fingers being amputated in the hinges. When you contact the company they'll send you a cover for the hinge. Dealers have already been notified, but the public release won't happen until Tuesday, November 10th.

URGENT prayer request!


As many of you know, I'm fairly involved with some of the families from Reece's Rainbow and their adoptions. At the moment my good friend Renee and her husband Frank are in Ukraine getting their daughter Kellsey. My friend Shea (private blog) is in Estonia getting her son Oskar, and this spring I'll be traveling to Bulgaria with my friend Shelley to get her two new boys.

But there is someone in Eastern Europe who is in imminent danger!



For those who don't know, look for my other posts about adoption from Eastern Europe to see how life will be for her. Her chances of survival past 1 year in in the institution are very slim, and those years she does survive will be full of malnutrition, starvation, dehydration, cold, and sometimes covered in urine and feces, naked and tied to a crib!!!! The light that you see shining from these eyes will be extinguished in a matter of weeks.

An urgent appeal was posted for her through Reeces Rainbow... She needs a family NOW... She will be transfered to an institution in days or weeks, and will not be able to be adopted from there, but if someone commits to adopt her they will keep her back (at least that is my understanding, Andrea at Reece's Rainbow will be able to confirm this...)

If you are homestudy ready, this adoption could happen very fast. If you're not, you can still commit to her! Please, if you're even considering adoption, consider saving Lera's life. Please contact Andrea at Reece's Rainbow for more information.

Lera is a gorgeous little girl with blonde hair and blue eyes. She is 4 years old. She is quite high functioning and doing very well. She has no major heart conditions. She is able to walk, and climb, and eat by herself. She dances and understands and follows directions. She has also been transferred to the regular class (very rare!) so she is living and learning with typical peers.

Saturday, November 07, 2009

I've got my kid back!

So, after much deliberation, and trying to figure out what has changed, and what hasn't that would warrant Angela's erratic behavior the last couple of weeks, we decided to try putting her back on one of the meds we took her off 2 1/2 months ago.

Who knows why she was fine all that time, then a switch was flipped one day, turning our world upside down. Whatever it was, that switch has been flipped back and I have my fun, loving, funny kid back. The anger is gone. The aggression is (relatively speaking) gone. The smiles are back. Her teacher even called us on Friday after school, to let us know Angela had an amazing day. I'm sure her teacher was as relieved as we were!

And all is right in the world.


Layouts

So, I spent tonight messing up my blog layout, and now it's just that...all messed up! GAH!

Friday, November 06, 2009

Movie review: Where the Wild Things Are

!!!!!!!!DON'T BOTHER!!!!!!!!

Seriously, the worst money I have EVER spent on a movie. (when Dean has to tell I'm snoring, its really bad!)

Angela, on the other hand, is still talking about "Carol" and he/she (hard to tell in the movie) has now replaced Carl and Laura, whoever they are.


Intelligent reporting?

Good grief! Fox 9 news here in the Twin Cities, you're not so very intelligent, are you? Tonight you reported about the two MN soldiers wounded and killed in the Ft. Hood shooting. Lets see...how smart is it to stand in front of one soldiers house and report "The house is vacant tonight, her husband gone to Ft. Hood to be with is wife." Then proceed to explain the house happens to have yellow ribbons in front of it.

Announcement to hoodlums and thieves: The only white house with black shutters in Otsego, that happens to have yellow ribbons on the trees, and is traceable to a certain name, is sitting vacant!!! You know, just in case you're looking for a house to break into!

How about you THINK before you report?

Failing

I had coffee with a friend this morning (thanks Lynda!) and had every intention of coming home and doing homework. Somehow I ended up outside playing fetch with the dogs, which turned into raking, which turned into realizing how beautiful it is outside today!!! A wonderful fall day after WEEKS of crappy weather.

So, I'm not studying for my big test, because I'm doing yard work instead. If I fail the test on Monday, I'm blaming it on Mother Nature!

Accountability

I this was worthy of lifting from my friend, and fellow trainer Abby's blog. Although at the end of the video it says this is real, it's not. It still makes for good humor at 5:30 a.m.



Thursday, November 05, 2009

The Bermuda Triangle

I'm sure most of you have heard of the Bermuda Triangle. An area in the North Atlantic Ocean where boats and planes have mysteriously disappeared. There used to be documentaries about it, but I haven't seen one in many years. (I can still hear Leaonard Nemoy's voice, can you? LOL) Many people, being very superstitious (or smart?) refuse to fly or navigate through that area.

We live in the woods, and this time of year the mice like to try moving into our house! Every year we go through a couple of months of setting traps to catch the vermin. WHO KNOWS where they come in! There are probably lots of places in this 1970's rambler. Usually once there is snow on the ground we don't have a problem anymore.

Anyway....

Attention mice: Our basement is the Bermuda Triangle of the mouse world! I know that mice and rats are studied for their intelligence, but I can tell you from experience the ones that have moved into our house come from different genetic stock. They didn't get the smart genes. They completely ignore the Bermuda Triangle.

Attention mice: Did you know you will DIE in this house? You have seen your friends be beheaded and electrocuted in the fancy traps Dean has set out, yet you will walk right over your dead buddy's body, right into the next trap we have set right next to it! Thank goodness you're stupid, because it makes our job much less difficult. Squirrels are way smarter than you! (well, except for the one the dogs got last week.)

Tuesday, November 03, 2009

So, about that video

Of course, I had ONE person who couldn't follow the directions (Hi Monica!) so you've probably gone back and watched the video again already. If you haven't, how many of you saw the gorilla? Here's the link again.


Guess what!

!!!!!!!!!WE HAVE APPROVAL FOR BOSTON!!!!!!!

Visual perception skills

Everyone sees things differently. How do YOU see things?

Here's the directions:
1) go watch the video linked below. But ONLY WATCH IT ONCE! PROMISE? While watching, count how many times the WHITE TEAM passes the ball. ONLY count the WHITE TEAM'S PASSES.
3) come back here, and in the comments post how many passes you saw. Different people have different perceptual skills. So, to avoid wrecking the game, please post ONLY the number of passes you saw, and NOTHING ELSE.
4) I'll come back tonight an post the answer.

Did you read the directions thoroughly? You're only watching it ONCE, and you're only posting how many passes the white team makes and NOTHING else, right? Ok...now, go here and watch the video.