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?

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!

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!

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!

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!!!!)

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.............

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

shhhhhhh

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

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!)

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?

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!

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.

Make an on-line slide show at www.OneTrueMedia.com

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!