Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

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

Friday, April 25, 2008

I won't do it! (said with arms crossed and foot stomp)


See this thing? It's a wallpaper scoring tool.
I have probably bought 4 of 'em in the last few years. I REFUSE to buy yet another, but...umm...where is the one I was using a few months ago? After my post about the list of projects that need to get done, I decided I might as well get to work on the kitchen. I got out my scraper, got out my DIF (I swear by that stuff for wallpaper removal, especially when there are TWO layers to remove!), and was all set to start. Except for the small problem of finding the darned scoring tool!

Some people say, "Don't score it! It'll take forever to get off!" I find this to NOT be true, but ONLY if the tool is used correctly. Used with too much pressure, and yes...the paper will come off in bits and pieces and it'll take you forever. Well, that and the fact I have two layers to get through. If you have two layers you can get your DIF (some people prefer to use plain water, but I like my DIF) down to the bottom layer.

Anyway, I'm now on a hunt for the thing. I've got the urge to work on this project NOW, but that could be very short lived so I need to do it while the urge is there! LOL

The Countdown

Seven weeks.

That is how long we have until Dean's annual family reunion, and it's our turn to host it. Keep in mind the weekend prior we'll be out of town! Dean and I work well under pressure, so I'm sure we'll be fine. Yes, I'm sure of it. No...really...we'll be just fine. We won't even kill each other!

The last time we had a big thing here (his twin brother's wedding) we totally re-landscaped the yard in that amount of time! We do know ourselves well though, and when working under such stress, some days one of us might say to the other, "Don't talk to me today. Really...it would be better not to."

Here's what needs to get done by party time:

Remodel basement bathroom (It's been 1/2 gutted for 3 years now. Since not one thing has been purchased for this project, this will prove to be the most interesting project of all) All that junk in the background is where the shower is supposed to be, but has now become kind of a storage area....sigh....(I really didn't want to post the picture, but it'll be fun to show an "after"!)
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Do SOMETHING with the *^&# pond!! I want it filled in. The pond is huge, and honestly as much work as a pool, and if I want that much work, I want something I can use! Here's what it normally looks like
Pond

And here's what it looks like now. This may not LOOK like much work, but that is an entire weekend project you're looking at. And those rocks? H-E-A-V-Y, and I can't lift anything so it'll be up to Dean and Tyler. This will need to be done before the fence goes in.
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Get fence installed in back yard (Containment for Angela and the dogs. This will be a HUGE stress reliever on several different levels)

Finish stripping kitchen wallpaper, then paint. Here's what it looks like now:(project I started LAST summer, now needs to get done.)
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Cleaning the garage would be a good thing too! Two years ago I took this picture to PROOVE that we really could fit two cars AND a motorcycle in there! Now? Can't even get ONE car in there because there's a junker, TWO motorcycles, and lots of JUNK!
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Do some planting outside to replace stuff destroyed by the dumb Chemlawn guy last summer. (You'd think they could tell the difference between a hosta, clamatis, and weeds! OMG, I'm so furious about what they killed! 5 years of growth in the gardens GONE!)

Haul a load of junk furniture to the dump (old couch, some odds and ends of crap.)

Repaint floor in 3 season porch (This is the room where we serve food when we entertain in the yard. But there were puppies in there last fall, so it needs to be thoroughly scrubbed down and repainted. The dump couch is the "dog couch" from that room.) Sorry, but I will NOT be posting a picture of what this looks like right now! Just imagine the worst.


Professionally clean basement carpet (We have 4 dogs, need I say more?)

Re-seed the yard. I got the front about 3/4 done a couple days ago, and have a huge BARE spot fenced off so the dogs can't walk on the heavy seeding I did there. That was the favorite wrestling and "let me make toothpicks with this stick" spot.


Find a place for all the dogs the day before and day of the party (This is so that not only are the dogs not underfoot in the final hours, but also so that we're not re-cleaning AND we can get rid of all land mines before company comes.) Look at these four lovely, well-behaved dogs, who wouldn't want them for a couple of days?
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Anyone need a dresser? It's in my way!

Thursday, April 24, 2008

Enterprise Rent A Car

Just what IS the purpose of a car rental agency? To rent cars? And who do they usually rent them to? Joe Schmoe who lives right next door, or John Smith who flew in from out of town? How many people pick up their rental cars right at the airport? Is it safe to say that those who pick their car at the airport are usually from out of town, usually from out of state even? Here's the story of Ragamuffin Soul, who recently had a run-in with Enterprise Rent A Car. Why am I linking to this story? Because the more people that do, the higher his google rank on a search. He's nearing the top!!!! That means if someone googles "Enterprise Rent A Car" they're going to see his post, and they need to!

Dear Enterprise Rent A Car

Wednesday, April 23, 2008

99 Balloons

It's HIS plan that counts, not what any doctor says.
http://www.ignitermedia.com/products/iv/singles/570/99-Balloons

Oh no! Please pray!

Dean works for a small, but successful company. This afternoon his boss Pat, Pat's wife, and a couple employees went to lunch together. One of the employees rode with Pat. When they were done eating, as they were getting ready to pull out of the parking lot Pat suffered a massive heart attack!

The employee riding with him was able to do CPR until the police got there, who took over until the paramedics got there and used the defibrillator on him.

As of 7:00 this evening Pat is on life support and in a coma. Please pray for him and his family. Please pray for those who were there feeling helpless at the time. Please pray that the other employees can keep things running smoothly while Pat recovers.

Wordless Wednesday

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Monday, April 21, 2008

No Rocks In My House!

You may remember this post about Angela learning to swim. We have consitantly swam 3-4 nights per week since September, and I am proud to say that Angela has lost the nickname "The Rock", and is now called "A Swimmer". She has worked so hard for this, and I have tried so hard to keep my mouth shut so Coach Keanne can work his magic. I'm just so stink'in proud! Be prepared when you watch the video, you will find yourself trying to make her swim harder! LOL

Heaven Gained Another Angel


Heaven gained another angel last night. Cody Lee is finally free of pain, free of sickness, and is dancing in the arms of Jesus. Please say a prayer for his family as they say goodbye to their boy. 12 years is too soon to say goodbye to a child.

Sunday, April 20, 2008

For the Boy

A valiant fight
That's what you've shown the world
that laughter is important
no matter how sick you are
or how much pain you're feeling.

But how do you say goodbye to your mother,
Your brother and sisters
Your father.
How do you tell them that 12 years
wasn't long enough?
That you want to be out
playing ball with the other boys
not wondering if you'll feel your mother's kisses in the morning.

This is bigger than any boy
and yet you rise to the challenge.
You have fought the fight of a warrior.
You won.
You won your place in God's kingdom!

Close your eyes now
and rest
You see Him waiting for you.
You hear him calling your name.
Don't be afraid
to sleep.

Saturday, April 19, 2008

Please pray for Cody Lee

Please...visit the carepage of CodyLee (go to www.carepages.com , click "visit", then type in "codylee". His family needs every prayer they can get right now.

Friday, April 18, 2008

Ooohhh I can hardly wait!

Angela has always wanted to ride (motorcycle) with us, but frankly I'm a little worried that she might decide to just get off the bike going 65 mph down the highway! So, last spring I purchased a sidecar to attach to my bike so that she can ride with me.

Sidecars are complicated things really. Well, I guess they're not THAT complicated, but the certainly can't just be plopped onto the bike, and you certainly can't expect to just jump on and go! Nope, can't do that. First we got hooked up with a sidecar group...the Skunks (sidecars up north, with "up north" being any place north of anything!) who kind of helped me figure out what to get.

So I got this....
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And needed to figure out how to attach it to this....
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Did I mention that was back in June or so, and it's now April? Well, first I had to finish paying the very patient man who sold me the sidecar. After that, the very particular me didn't want a WHITE sidecar attached to the RED bike. No, unmatching parts wouldn't be good for my psyche, so I was on a quest for someone to paint the sidecar. Oh yeah, that cost money too, doesn't it?

Finally in February I got hooked up with TJ Design who does AMAZING work on bikes. On March 12th we had a warm day (52! WHOO HOO!) so I rode my bike the 50+ miles to his shop so we could discuss the paint job and he could do a paint match with my bike. We expected to have it done by the end of March, but the following day I had that little mishap with the ice.

Next week I get to pick up my bike, and the following week the sidecar should be done! I can't wait to post pictures of how pretty it's going to be! I wish I'd been able to afford a custom job, but for now "matching" works for me! As soon as the sidecar is done, I'll bring both the bike and tub down to Dave's Cycle to have the sidecar mounted.

And once it's mounted, what's left to do? LEARN HOW TO RIDE IT! I'm glad I've gotten well connected in the sidecar world, but there are some things about sidecar usage that cannot be taught. Rest assured, I'll be safe on my hack before Angela will be going along on any rides. In the meantime, I'm dreaming of all the weekend trips we can take as a family!!!!

Two in just a few months


That's two politicians that is! Two US politicians to have babies with Down Syndrome. The state of Alaska released this press release today:

Palin Family Welcomes Fifth Child

April 18, 2008, Anchorage, Alaska – Governor Sarah Palin and her husband Todd welcomed the arrival of their fifth child this morning. The Palins were thankful that the Governor’s labor began yesterday while she was in Texas at the Governor's Energy Conference where she gave the keynote luncheon address, but let up enough for her to travel on Alaska Airlines back to Alaska in time to deliver her second son.

Trig Paxson Van Palin was born at 6:30 a.m. and weighs six pounds, two ounces. The Governor and Trig are both doing well and resting comfortably.

The family released the following statement:

"Trig is beautiful and already adored by us. We knew through early testing he would face special challenges, and we feel privileged that God would entrust us with this gift and allow us unspeakable joy as he entered our lives. We have faith that every baby is created for good purpose and has potential to make this world a better place. We are truly blessed."

The Palins have four other children including Track, 18, Bristol, 17, Willow, 13 and Piper, 7.

Sweet Nothings In My Ear


Terri, over at Terri's Special Children Blog posted about an upcoming movie. Being an interpreter, this one is close to my heart, and a struggle I've seen played out in many families.

"Sweet Nothings In My Ear"
is the story of a couple facing a difficult decision. Suppose your child was deaf, but could have an operation (not without risk) that could make him hear again?

Dan Miller (Jeff Daniels) and his wife Laura (Marlee Matlin) only wants what's best for their happy and healthy 8 year old son Adam, who's been deaf since age 4. Laura opposes the surgery - a cochlear implant. Being deaf she doesn't consider it a disability, and believes an operation, regardless of outcome, would make Adam feel that something was wrong with him. However Dan, who can hear, misses talking and listening to his son. For him and operation is worth the risk, believing Adam's life would be easier and more complete if he could hear.

This is a devoted family facing a moment of truth. Together or apart, Laura and Dan must make a life altering decision on behalf of their son. You won't want to miss this powerful presentation from the Hallmark Hall of Fame on Sunday April 20th, 9/8c on CBS.

Wednesday, April 16, 2008

The Dog House


I love my dogs. Really, truly, I love each one of them. They entertain us as they entertain each other. They keep us centered, and they're very good at spending our money.

Rubee...she's the matriarch of the pack (but not the leader). At 6 1/2 years old her life is all about the sunniest spot on the driveway, where she'll spend most of the day. Since we're up on a hill she can watch the entire neighborhood from there, content as can be. Rubee also has a secret addiction to bread...whole loaves of it...and if it's not put waaaaay back on the kitchen counter it'll be gone when you want to make toast in the morning. Rubee is a Golden Retriever, with "retriever" being the operative word. Goldens are known for bringing "gifts" to you when you come home from work, or from walking down the driveway to get the mail. Sometimes the gifts are nice things like a dog toy, but she's not picky. A bra, dirty underwear, or an empty beer can will do. Here's Rubee, enjoying the driveway on a warm day a couple weeks ago. Notice that she found the only dry spot there was!

Dudley...Dudley is a 2 1/2 year old Goldendoodle (golden retriever/Standard Poodle cross) Dudley is deceptively huge. He's very tall (can lay his head on a kitchen table comfortably) but skin and bones underneath is fluffy coat. He's super smart and so eager to please! He's the dog you see in the agility video with Angela. He's a mama's boy, but loves to go to work with Dean too. As long as you're happy, he's happy. Dudley happens to love diet food, which I discovered when I was on Nutrisystem last year. Yep, that $300 a month shipment could disappear in a couple of days! No wonder he's so skinny, he's on a diet! Dudley is one of Rubee's sons, which means he inherited the retriever gene. Unfortunately he doesn't always bring you what he's found to steal. In the mornings when we let everyone outside we have to check his mouth first, as he's often hiding contraband in his giant mouth. You wouldn't believe what he can fit in there! Hiding works two ways though, so he's very good at sneaking things INTO the house too...like dean things. Sometimes he forgets he's hiding stuff in his mouth though. Either that or he decides he doesn't want to give it up, so he swallows it. Yep, I've discovered doing poop patrol that little girl socks make a tasty treat. So does aluminum foil.

(left, Zurri in front, Dudley in back)

Zurri....Zurri is the princess, and is the leader of the pack. She's an 18 month old standard poodle, and future mom here at our place. (she'll have her first litter sometime around October 2008) Being a teenager, Zurri has recently regressed to a 6 month old puppy stage and can hardly contain herself. My well-trained princess can now go from standing still with all 4 feet on the ground, to springing straight up in the air to look me in the eye. She's also learned something new. That if you run through the invisible fence, the shock only bothers you for a split second, and when you're ready to come back into the yard you just have to let out a special little bark and the human mom will come get you. But for all the silly things this highly intelligent dog does, she is the best cuddler in the world! She doesn't like anyone to be upset, weather they be human or beast. She spends hours every day cleaning all the other dogs (intensely licking their eyes, inside their ears and mouths, etc.) and would do the same to us if we let her.

(baby Roman trying to make sick Angela feel better.)

And then there is Roman. Roman is the new baby who isn't supposed to be here. He's SUPPOSED to be in a guardian home, but our arrangement fell through and so he's here with us. Roman is a 4 1/2 month old miniature red poodle, and a total clown. I didn't think it would ever be possible, but I think he's even smarter than Zurri. I can teach him any new command in about 30 seconds, and he was ringing the bell to go outside within 24 hours of my introducing it to him. Roman is also a puppy, which means he does puppy things like chew up whatever he can get his teeth on. His favorite chew toy is the dust pan, and even though it's bigger than him, he drags that thing all over the house. He's a mama's boy, only way worse than Dudley. If I close myself behind the door to do something like...say...go to the bathroom, he throws a tantrum outside the door. If I sit at the computer he runs to get the dust pan so he can lay at my feet and chew in peace. Roman is a theif though, and has discovered that Angela's room holds all kinds of treasures, most of which cause her to chase after him yelling, "Give it BACK you naughty boy!" Roman LOVES these games of course. Roman has also taught me that I'm at the computer a lot. The other day, while he was outside, I sat down on the couch. A couple minutes later when he barked at the door Dean let him in. I watched him run through the entry, down the hall and stick his head in the office door. What? No mom? But that's where I ALWAYS find her! He turned and looked in the bathroom, but when he didn't find me there either he got a puzzled look on his face, and stuck his head into the bedroom instead. No mom THERE EITHER? In a soft voice I called to him from the couch. He turned, saw me and came FLYING through the house as if he was saying, "Well THERE you are! I've been looking all over for you! I missed you!!!!"

Yes, our life is crazy with 4 dogs plus one kid in the house, but we like it that way!

Worldess Wednesday

Friday, April 11, 2008

Don't forget to watch!



On Saturday at 9:00 ET the Lifetime channel will air "The Memory Keeper's Daughter". Many of you have read the book, and even more of us in the Down Syndrome community have been waiting for the movie to come out. (how many of us sent pictures of our kids for the casting call? LOL) Anyway, set your Tivo's or your DVR's if you're not going to be home.

Krystal Hope Nausbaum, who has Down syndrome, portrays the character of Phoebe from age 13 to 22.


Downsyn After Dark

OK so many of you won't have any interest in this post, but for those of you in the Down syndrome community, especially those of you who post at Downsyn, we have a new community to post at when Downsyn is not working. We are still active Downsyn members, but when Downsyn is broken and you need your fix, come join us at Downsyn After Dark. You'll have to register for a Yuku account and then jump in and post! We look forward to seeing you there! New members who don't post at Downsyn are always welcome too!

Busted!


When Angela was 11 months old she was diagnosed with a mild, bilateral, high frequency, sensorineural hearing loss. Let me put that to you in English. "Bilateral" means both ears. "Sensorineural" means that the loss will not be improved by putting in ear tubes because she the actual auditory nerve is damaged. You cannot fix the auditory nerve. And "high frequency" means that in the speech tones, she doesn't hear things like sh, s, f, h, ch,k, p, b, t, d, th,. So if you were to take a sentence like "Did you put your socks on yet?" Angela will hear something like " i you puh your ah on yeh".

And so, at a year old, Angela was fitted with her first set of hearing aids. She wore them really well until she was 3 years old and it was time to start preschool. She acted as if she was afraid to make any noise herself, and she would stand in the middle of her classroom afraid to even take a walk around the room. Take her aids off and she was a happy camper, bee bopping around like everyone else. We decided to forgo the aids for a bit.

When Angela was starting kindergarten we went back to the aids and she tolerated them much better, as long as she was at school. At home she wanted her aids off and would go to great lengths to hide them all over the place.

In second grade we discovered she also needed glasses, and THAT is when we found out how tiny her ears really were. We'd always had a tough time getting a good fit for her hearing aids, but add glasses to the mix and it was a disaster. Her tiny ears couldn't support both an aid and glasses. Finally, in a last ditch effort, we petitioned the insurance compay to pay for tiny in-the-ear hearing aids. These aren't usually done for small kids because they have to be rebuilt on a regular basis as the child's ear canal grows. Fortunately the insurance company approved them. Unfortunately Angela didn't have them very long before she fed them to one of the dogs. That was the end of hearing aids at home for awhile. She still wore them in school, but I gave up at home, even though Angela's hearing had changed and had gone from a "mild loss" to a "moderate loss", meaning aids were even more important for her.

Last fall my nephew AND my father in law were fitted with new aids. They're the new "open fit" aids, which are much smaller and much lighter than the aids commonly worn until that point, and are nearly invisible. They're also ideal for Angela's type of hearing loss. Dean and I talked about it a couple of times, but really felt we'd be pushing our luck buying yet another set of aids, and it was likely insurance wouldn't cover them yet. (insurance only pays for them once every 5 years.)

The phrase "Ignorance is bliss" fit us well, until Christmas vacation rolled around and we realized just how bad Angela's hearing was. Wearing her aids every day in school she does fine, but when there is a long school break and she's un-aided...well..there was a DRAMATIC difference in her speech. We could barely understand her.

In March (I know, I'm slow) I finally got around to ordering her new aids, which brings me to the title of my post. On Wednesday Angela and I went to pick up her new aids. Since she's never been very tolerant of them at home, I've been talking them up for a couple of weeks. She had some complaints while they were being fitted, and we have to go back next week for ear molds that we were hoping to not need, but she seems to be doing well with them.

Last night I was in the kitchen sneaking a spoonful of fudge topping from a jar in the fridge. (I hope my Jenny Craig counselor isn't reading!) when I hear a voice coming from down the hall, "What you having?"

gulp

"Ummm....just getting stuff ready for dinner. Are you hungry?" Angela walked into the kitchen and looked from me to the fridge, and back again. Then turned and walked back out. I think she was trying to decide if she'd REALLY heard me in the fridge or not! LOL

This morning we reached a milestone. In 11 years of inconsistent hearing aid use, this has never happened. While getting dressed for school Angela came to find me, "Don't forget my earring aids!"

Wednesday, April 09, 2008

The scariest word in the world

On Monday, a young lady who is very well known in the DS community passed away. Her name is Melissa Riggio, and she is the daughter of Steve and Laura Riggio, (Steve is CEO of Barnes and Noble.) Melissa was 20 years old.

Melissa was a role model for people with Down Syndrome, and for parents of new babies who have DS and needed to see that DS doesn't have to be a bad thing. There was a National Geographic Article written about her, and she was also a singer and song writer. This week our tight-knit community is mourning the loss of this beautiful young woman.



We parents of children who have Down Syndrome learn early on that there is one word that is taboo in our vocabulary. It's the dreaded "L" word.

"L" stands for "Leukemia".

Every parent, regardless of how many chromosomes their child has, is afraid of ever hearing the word cancer used in the same sentence with their child's name. For the average child, the incidence of childhood cancer is approximately 1-2 of every 1o,ooo children.

Unfortunately for children who have Down Syndrome, approximately 1 out of every 100 will develop Leukemia. The good thing is that for some reason, children with Down Syndrome who develop Leukemia have about a 80-85% cure rate.

For every parent of a child who has Down Syndrome, unexplained fevers, painful joints, and weird rashes (petechiae) are always cause for great concern, and they make us run to the doctor for THE blood work necessary to rule out the dreaded "L" word. About 3 years ago I had such a scare with Angela. When I brought her into the pediatrician for the 5th day of an unexplained fever, lethargy, and a few spots of petechiae, I was afraid to say what I really thought it was. I said, "I don't know what's wrong, she's just going downhill really fast. Please tell me what's wrong with her." The pediatrician knew what it was I didn't want to say. "Don't worry...you'll know before you leave here if you're going home or to the oncologist." Angela didn't have Leukemia (instead a low-lying infection from a surgical wound.) but the whole episode scared me to death.

I have a lot of friends who's children HAVE been diagnosed with either ALL ( acute lymphoblastic leukemia ) or AML ( acute myeloid leukemia ). Neither of them is better than the other. If a child develops AML, they will have 6 months of intensive chemo. If a child develops ALL, they go through a THREE YEAR chemo protocol.

Somewhere along the way I was told that it's very rare for a child with DS to develop leukemia past the age of 5. Most are diagnosed between 1-4 years of age. Now that Angela is almost 12, I've pretty much let my fear of the word disappear. However in the past week not only did we loose Melissa at the age of 20, but I've been reminded of a couple other adults with DS who've lost their battles as well. But I know it's not good to live in fear, and in fact, God doesn't want us living in fear. We're to trust him, right?

And so tonight I will hug Angela a little bit longer, and a little bit tighter. Together we'll say a prayer for the Riggio family, and for others who are close to us who's children are battling that dreaded "L" as we speak. (we know several.) If you will, please add them to your prayers as well. In fact, here's a link to our friend John's site. John was diagnosed with ALL in June of 2005, and his family is counting the days until his estimated last day of treatment, August 30, 2008.




Monday, April 07, 2008

Update on our morning mess

Warning: do not read this post if you are easily grossed out.

This day has gone right to the crapper! No kidding! First, there was the morning fiasco with Rubee. Thankfully she hasn't had any more problems today, but she's also been confined to the crate. Not taking ANY chances there!

This afternoon I had to take Angela to swimming lessons. Roman comes along because afterward we go to dog school, where I take him to puppy class and we hook up with my sitter who takes Angela back home.

5 minutes before we're to walk out the door I'm trying to convince Angela to get her swim suit on, when she says, "Eeewwww nasty! Look at Roman!" I turn to see Roman scooting his butt along the hardwood floor, leaving a lovely streak behind him. No, he's not sick, just had some stuck stuff on his butt hair that was bothering him. Before I could get to him he managed to streak about 15 feet of the entry and front hallway. Thankfully these are either ceramic or wood floors.

I throw the puppy in the tub to give him a butt bath, which somehow spurs Angela to get her suit on. Thank God! I can't wrestle her right now with a broken wrist!

We get to swimming, and carsick Roman is puking in his crate. (poodles are the most car-sick dogs EVER! He's even worse than Zurri was!) I take Angela inside, and while walking down the steps to the pool she twists her ankle, which immediately swells and bruises. She can barely walk, but still wants to swim. Coach thinks just letting her lounge in the pool might help it so I go along with that.

Swimming done, get the kid down, then back up 3 flights of stairs to get her changed into clothes, and head for dog school. Get there to discover sitter didn't show up so Angela is going to have to hang out with me and watch the class. Thankfully this is something she LOVES to do!

Now, last week Roman got a stick stuck in his throat. Took him to the vet for a residual cough and his trachea is inflamed. He still has the cough, but is otherwise fine. That is, of course, if you don't consider the fact that he's horribly car sick so puked up 4 times during class, then again in the car on the way home.

I get home 1/2 hr ago, and the house REEKS!!!!!!! It's the left over smell from this morning. I just got Angela tucked into bed with ice on her ankle and she's already telling me, "I stay home tomorrow, go see Dr. Mary instead."

Calgon....where the heck is the Calgon???????????????????????????