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, December 31, 2010

Our Year in Pictures

2010 in Pictures

In January Angela had her very first season in floor hockey. She LOVED it!

And Connecting the Rainbow was formed, which meant collecting all the donated supplies for Bulgaria.

In March we spent a lot of time preventing cabin fever as we waited for warmer weather.




We didn't know it yet, but April was the month that would change our lives forever.

These boots would see places I'd never dreamed of.

I loaded up all my things, plus two hundred pounds of donated supplies, and headed for Serbia and Bulgaria!


I met the most amazing children there! EVERY ONE of these children is coming home soon, or is already HOME with their forever family!!!!




I saw places rich with historical importance.

And in April I met Axel for the very first time.

I got to experience wonderful moments.

Learn what happens when there are language barriers

And make friends for life.




May brought a tooth extraction for Angela

And a lot of lay'in around!



June brought the birth of baby Earl (son of Dean's nephew)


June also brought Angela's 14th birthday...


And of course party tricks!


In June Angela went to camp. Twice.



In July we went north to my parent's home for my sister Sandie's wedding.

And Dean worked on getting the house painted. (it's December...it's still not done.)




In July, Angela's oldest brother Rob and his family came to visit.



And some of us just tried to be cool!





I August I had my 25 year class reunion. Really? TWENTY FIVE YEARS?

Angela played some guitar

And Bella came to our house to wait the arrival of her babies.



September was all about exercises in patience

And watching the puppies grow, which is also all about patience!






In October we watched the puppies grow some more.


Angela had her area bowling tournament...

Where she won another ribbon (and a gold at state!)

I also put our Dossier in the mail to Axel's country!

The last week of October Bella's puppies went home to their new families.






November was all about getting ready for Axel to come home!



And last, but not least, December brought me to Serbia to complete our adoption of Axel.






Meeting Papa and Angela for the very first time!




Very first night in his new bed


Christmas brought us rock concerts in the living room

And a lot of love too!


Happy New Year from all of us.
It's safe to say that 2010 has been an important year for our family. You never know what each day has in store for you. Live 2011 like you're excited to find out what's around the corner!


Thursday, December 30, 2010

Networked?

I've noticed the "network blogs", as a lot of the blogs I've been reading for years are now part of this network, but I really didn't pay any attention to it.

So I'm networked now. Do you see it down there on the right sidebar? Yep, I'm my only follower! ROFL

Cooking for Axel


Last night Angela was reading to Axel, and today she decided to make him lunch. She sure is loving being the big sister!


The Big Sister


Axel, I don't like this show. It's boring.

No really Axel, this is VERY boring!

Axel, see this book? We're going to read it.

I'm gonna turn the pages, and you're gonna listen. That's your job.

Are you listening Axel?

There! Now wasn't that a good book?


Oh Johnny Boy

There's a new movie out. Well...ok..it's true that I'm usually a little behind on the release dates of movies. This time I'm claiming "adoption" as the reason since while I was in Serbia I wasn't paying much attention to the movies that were coming out.

Yesterday a friend of mine and I were discussing meeting up at a theater with our kids. (and Axel's first ever experience in a movie theater!) While scanning Moviefone for show times I noticed there was a new Johnny Depp movie out.

I will say it right now. I love Johnny Depp. Not HIM though, but the characters he plays. They're always a bit on the odd and quirky side, and Johnny is great at making them believable. So anyway, I went looking for information about "The Tourist", and managed to google Johnny Depp images.

Wow! Put all those images in front of you at once, and it's very interesting to see the changes in him over the years! I know a lot of women who are physically attracted to Johnny, but I am not one of them. He's just not that hot to me. But I do have a tendency to fall for the bad boys (just ask my mom how that worked for me in high school. ;-) and many of Johnny's characters have fit that description.

Jack Sparrow. If only Jack Sparrow would pay a visit for just a few minutes. If his shirt fell off it would be ok too. Oh...wait...never mind! Jack Sparrow has Johnny's body which I'm not all that attracted to!

Then I remembered, I can pay a visit to Jack Sparrow any time I want. All I have to do is walk into Angela's room, and there he is, life size!

So, has anyone see "The Tourist" yet? How was it?

Wednesday, December 29, 2010

Too much of a good thing?

Every day people email me or post comments on my blog asking how Axel's transition into the family is going and how Angela is doing.

Is it possible for it to be going "too well"?

The first day I had custody of Axel was rough. I was expecting the worst, so I wasn't surprised. That said, it doesn't really matter how well you prepare yourself, when it comes down to it you have NO CLUE what each child is capable of dishing out until you finally have them in your care. What surprised me about Axel was that he didn't cry or act upset. HE LAUGHED. He laughed as he pulled my hair, and he laughed as he threw my glasses. He just laughed.

It took a few days of him testing the my limits, but each day was better than the one before. By the time our travel date rolled around, he was perfect 90% of the time. The other 10% were very typical, developmentally appropriate issue to deal with, that I would expect to see from any child stuck with a new mother he couldn't understand.

I warned Dean that when we got home Axel would start testing the limits all over again with him, and he did. Those issues are also mostly gone.

Our days have progressed to having two kids home, (Angela is out of school for Christmas break) listening to them play together, then shifting them to a different activity when they start getting carried away, working with Axel on some of the million learning things he's missed out on, and getting them both out in the world to experience it.

This transition has gone so well thus far, that it has be worried about what I can't see. Like there is something waiting around the corner. I know I shouldn't throw stuff like this out there in the universe, but I can't deny that I have these thoughts going through my head once in awhile. I mean...this has been too easy so far.

Next week we have several doctor visits lined up. (PLEASE PRAY we hear about his insurance by Friday, otherwise we'll be paying for all these visits out of pocket, and we don't have that much to cover all of them right now.) Monday we have an appointment for Angela, Tuesday both Angela and Axel will be seeing the dentist, and Weds we'll be going to the International Adoption Clinic. Sometime during the week I'll be hearing from the school district about what day they want to start his assessments which have to be done before he can start school. I can't wait to get these done, as they'll give us a baseline to compare to a few months from now.

Angela has been adjusting very well. We arrived home on Weds, 12/16. The next day I gave Angela the choice of going to school or staying home with us. She chose school, but by mid morning it had proven to be too much for her. She asked he teacher to call me, and we were able to talk her into staying for the rest of the day. The next week, on the last day before Christmas break, she couldn't hold it together. Her teacher had gone home unexpectedly so there was a sub for her along with subs for some of the aids. It was Christmas mayhem at school, and there was a new brother at home. School called me at 10:30 to tell me they were seeing behaviors they hadn't seen in well over a year. It was time to bring my girl home to just hang out with her brother.

She has done great since then. We had a minor incident yesterday but other than that they've been great. Angela makes it clear when she needs some attention, and we oblige her with that, while also trying to notice other things she's doing BEFORE she feels the need to ask for attention. I think the newness of Axel is wearing off and when school starts up again next week Angela will be ready to go back to her normal routine.

So...is it possible for things to be "too well"?

What are your plans?

Every other year, (as in alternating years) Dean and I are on our own for New Year's Eve. We usually go moonlight bowling. This year Angela is supposed to go to her dad's house, but we'll still have Axel. Since he's too new home to even consider leaving him with a sitter, we'll be doing New Year's at home this year, and maybe have some people over for a little adult Wii bowling tournament! LOL

What about you? What is your family doing?

Tuesday, December 28, 2010

Hey Axel...c'mere!

Hey Axel, come over here.


Want some candy? It's Angela's favorite!


Chew it up really good.

Ok, well it *might* be a little bit fizzy...


and a little sour.

I knew it would be your new favorite candy too!


You can't have him!


He makes his bed....




He folds laundry....



He puts his toys away.....



AND HE DOES HAIR!


Notice the clip in his mouth? That's the sign of a TRUE professional!



Do It For Lois

Some of you are new here, and maybe even new to the world of Down syndrome. Welcome to my world. Down syndrome certainly doesn't rule my life, but with two kids with DS in the house, it's certainly a huge part of it.

If you are new here, there are lots of things you can learn on my blog about DS. You can learn that our kids with DS are just like your kids. They laugh, they cry, their feelings get hurt, and they love.

They can also get sick.

One of strange little things about DS is that our kids have a higher than normal incidence of developing leukemia, usually AML or ALL. Another interesting fact is that kids with DS have a higher CURE rate than typical kids! I know...strange isn't it?

I hate this. I hate when one of my online friends posts about some strange symptoms their child is having. I get goosebumps as I plead with God, "Please God! NO! Not THIS CHILD!! PLEASE! PLEASE LET THIS CHILD BEAT THIS DISEASE!!!!!"

And I DO know many kids who have done just that. They have beaten the monster that is Cancer. My very good friend Ann's son John is one of them. He was diagnosed with ALL when he was 2 1/2, and he's 8 now. EIGHT! Like many families they had a big "End of Chemo" party and everything. (which I had to miss for some reason.)

Then there are the families who have had to say goodbye to their kids. There are too many. And every time a child is lost, our community is rocked. It's a small world, this world of Down syndrome.

But sometimes none of the cancer-fighting drugs work well enough, leaving only one more possibility to save them; a bone marrow transplant. Sometimes a family member is a match and can donate his or her bone marrow, but sometimes the only option is to find a donor from the National Bone Marrow Registry.

Lois is one of those kids, along with her good friend who also has DS and is 21 years old. He has just relapsed with ALL and a bone marrow transplant is now his only option.

In this season of giving, what can be better than the gift of life? Please go to bethematch.org and order a registration kit. Maybe you'll be a match for Lois, or her friend, or your neighbor's child...or your own.


Monday, December 27, 2010

About Those Teeth

I think I mentioned on my other blog that Axel's teeth are a mess, which is putting it gently. Thankfully he'll be going the the dentist the first week of January. (Please pray his insurance is in place by then! There was a small glitch in paperwork.)

When I first got custody of Axel, he LOVED the vibrating/spinning toothbrush, but I couldn't really get in there to actually see the condition of his teeth. By about the 3rd or 4th day I could see that what I thought were missing teeth in front were actually teeth that had broken off. I still can't brush his teeth very effectively, but I can at least get into his mouth. Although he does not not act like he's in any pain, when I brush his teeth his mouth bleeds like I've severed an artery. But I understand the pain tolerance thing, because Angela is the same way. Her neurologist says that kids with DS are lacking pain receptors, given them a very high pain tolerance.

Tonight we were playing a game of "open wide!", and I used the camera to show him what it looks like when he does. He thought this was lots of fun, and I realized I could get some good pictures of his teeth! (sorry, these were taken before he brushed his teeth for the night.) Remember you can click on any pictures to make them bigger.

First, we got a cute smile. Not quite "open wide" though.


then he helped me out a little bit. Check out the tooth on the bottom left.


Check out the rotten bottom left tooth and major gum deterioration on the bottom right.

His top teeth are the worst, as far as I can see at this point. Where the teeth are missing, there are actually pieces of the old broken tooth still stuck in the gums. You can see that the next tooth back on both sides is broken off and completely rotted. Who knows what the tooth behind that looks like.

I can't see to the back of his mouth to see what he has for permanent molars. I don't think he's gotten his 12 year molars in yet. Most kids get them around 10 or so, but kids with DS often get them late. Angela didn't get hers until she was 13.

I know of a couple kids who've come from Eastern Europe and came home needing some, or all of their teeth pulled, but they've been baby teeth. I don't know what happens when they have to remove permanent teeth this young. Do they put implants in? Does anyone know???

Dean and I have said several times, Axel is our warm up as far as adopting older children go. We know that Ianna's teeth are going to be in MUCH worse condition.

What I don't get is why these kids are not provided with basic preventative dental care. Axel had been in a foster home for 2 1/2 years, and I know the family took good care of him. I think most of this damage was done before he was moved to the foster home, while he was still in the institution. And, maybe the dental care just wasn't made available to foster family to access for him. Whatever the reason, it's going to be awful oral surgery for him. So unfair to have to put a child through that.

Back on Track

Now that Axel is fully integrated into our family, and most of my blogging will be about Angela and Axel's antics together, I'll be back to blogging about our life here. However, I will keep the My Ianna blog open as I continue to post updates about Ianna.

To those who are new here, welcome!

Thursday, December 23, 2010

Special Education: Has this happened to you?

This video is quite funny. Well, except for the fact this happens in school districts all over the US. We've been very fortunate where we are, but I know there are others who have not been.

Monday, December 20, 2010

Venting

Today Dean went back to work, so I'm going to vent a bit. Because it's my blog and I can.

When I went to Serbia and Bulgaria back in April I was gone for three weeks. During that time not ONE stitch of laundry was done. NOT ONE! Dean promised that would not happen this time. HE PROMISED.

Before I left, I had every stitch of laundry done and put away. Putting away is easy in our house, because mine and Dean's stays in the laundry room (we have shelves in there for our clean laundry.) Angela's is right around the corner in her room, and all her shelves are labeled so it's easy to see what goes where. VERY simple!

While I was on this trip to get Axel, I mentioned laundry, and Dean assured me it was getting done, that I would not come home to a mountain of laundry. And, where I was staying had a washer/dryer so our suitcase was coming home full of clean laundry.

I should know by now, after 8 years, that Dean does not keep his promises. He did three whole loads of laundry while I was gone for 2 1/2 weeks.

And Axel and I just finished putting them away.

I love my Dean, and Angela was well taken care of while I was gone. But he also had his son and his girlfriend here many days to help out with Angela. Still, there is a mountain of laundry from two people wearing clothes for 2 1/2 weeks.

In a few months I'll go to get Ianna, and there will be three of them here. Shudder!

Tuesday, December 14, 2010

Christmas Carols, iPad style

Make sure you watch ALL the songs, I promise it's worth it.

Do you know the story?

Every person who calls themselves an American needs to watch this!

Friday, December 10, 2010

Love my kids!

Click to make it bigger, of course!

Posted by Picasa

Thursday, December 09, 2010

GREAT news!!

NEW YORK, December 8, 2010-The Centers for Disease Control and Prevention (CDC) and the National Birth Defects Prevention Network have published a study that updates national statistics regarding the prevalence of Down syndrome in the U.S. Click here to read more about the study.

The study indicates that there are about 6,000 diagnoses of Down syndrome each year in the United States. One in every 691 babies is born with Down syndrome. This is an increase from the previously reported statistic of 1 in every 733.

Based on the new study, the National Down Syndrome Society (NDSS) will cite the new prevalence estimates on its website and other materials.

Tuesday, December 07, 2010

New Here?

If you're new here, and wondering why I haven't been updating my blog, it's because I'm currently in Europe adopting my new son. You're welcome to follow along on my adoption blog! I promise to post more when I get back in a week or so.

Saturday, November 27, 2010

Cyber Monday Anyone?

Some of you may have ventured out for Black Friday, and some of you more sane people stayed home, or maybe took advantage of some of the Black Friday deals available online. We waited until mid-morning when the crowds had died down before venturing to Best Buy to get an item I need for my trip tomorrow. (and if you don't know what that is yet, you are in the dark and should go read HERE! LOL)

Next up? Cyber Monday of course! This is the day you can hang out on your couch in your jammies or hunkered down at your desk at work if you must, and log into your favorite online shopping sites to find some of the best deals of the year!

A long time ago, when Angela was still a baby, I did all my Christmas shopping online! I loved it, and was able to get everything from big ticket items to stocking stuffers, all delivered to my door and never paying a penny in shipping costs. If you have the guts to do it, you can even wait until the last possible shipping day, and get some FANTASTIC deals, particularly on sites like Toys R Us, and some other big names. It's just possible I've done that a time or two. LOL

So, are there any online deals you're particularly interested in this year?


Thursday, November 25, 2010

Squinkies???





Have you heard of Squinkies? Apparently Angela has! She came home from school on Tuesday talking about the, except that I had NO CLUE what she was saying! Surely I was misunderstanding her. It wasn't until a friend of mine called, and could hear Angela in the background and clarified it for me that I was brought up to speed.

All you parents of kids in the elementary age demographic, I hope you're paying attention! Squinkies are the hottest, must-have toy on the market right now, and if your kid is left out, it's all your fault.

Like most hot toys, these little guys come in various series, adding to the collecting frenzy among kids who must have every one. Of course, no collector toy would be complete without accessories!

There is the Gumball Surprise Playhouse
And the Cupcake Surprise Bakeshop

and of course, no Squinkie collection would be complete without the Squinkies Palace Surprise where you can proudly display ALL your Squinkies!


How Did You Get Here?

Once in awhile I like to look at the keyword searches people used to find my blog. Sometimes they're self-explanatory and sometimes they're quite funny! Occasionally they're downright CREEPY! So here are the keyword searches from this week:

Garden of Eagan: Pretty self explanatory, I think. Ok, so that brought 102 of you here this week. If you bookmark it, you won't have to google search it. ;-)

Narclopetic Insomniac: Really, this does exist, and yes, I've posted about it! LOL This has been the number one keyword search for my blog for three years, so clearly I am not the only person who has this! If that's you, welcome to my world!

Palate Expander: Yes, we have been there/done that. It was a no-go for Angela. Usually people are coming to find out what the thing looks like.

What does the esophagus look like?: Really it's quite odd. If you ask Angela what it is, she will go into a big long description of the tube in her throat that brings the food to her tummy, and how hers doesn't work right.

Zipper Merging: Most Minnesotans have NO CLUE what this is, and it shows! Seriously, if you're from Minnesota and you've never heard this term before, I've probably hollered not-so-nice comments to you under my breath while driving through construction zones!

Hom Furniture Complaints: This ranks number 14 in the most-searched terms on my list. Seriously, if that many people are looking for this, that might tell Hom Furniture they need to change some things! And my opinion? Don't shop there!

Does the Quick Grow with the Nail? I think you're looking for this post, and Umm yes it does.

Kids EEG: Oh, yes, fun huh? Here's a video of Angela explaining it. (and you can see the returned entertainment center from Hom furniture in the background! LOL)

Here are some fun ones!

"choose your words carefully, anything you say may be thrown back at you". Ummm yeah! Especially if you said something offensive!

"How did they make the antler for Grinch's dog Max?": Well I don't know how they did it for the movie, but we made ours with fabric, wire and fiberfill! Sorry, I don't have a picture of it. :-(

"What have I brought on myself?": That is a very good question! Do tell!

"Tiny hole in tooth": Time to head to the dentist!

"I was in bed, suddenly I heard a thump.": Ummm.....RUN! Run for your life!

"Holy buckets": Yes, I do say this alot, in place of words that aren't ok on a pg-13 blog, but in reality holy buckets don't work very well.

And are you ready for the SCARY stuff????

Well, I can't post them because they would draw the same creepy traffic! Just know there are a lot of people out there who's computers should be searched, and it's too bad Google Analytics doesn't give you IP addresses!







Angela's Favorite Day!

Thanksgiving is one of Angela's favorite days. Yes, she loves to see all of her family in one place. Yes, she loves all the wonderful food. Yes, she loves getting to stay up later than usual.

But what she loves most of all is the Macy's Thanksgiving Day Parade! Thanksgiving morning (tomorrow) will find her sitting squarely in front of the big-screen TV, watching the festivities, and cheering as she sees each of the giant balloon characters she recognizes. (who am I kidding? She knows ALL of them! LOL) She will stand to dance when a float comes by and is being ridden by any celebrity entertainer, but if they are any of the Disney variety she will be beside herself and blow kisses to him or her! Nobody, and I mean nobody, is allowed to interfere with the parade watching.

The funny thing is, in real life Angela is NOT a fan of parades. She doesn't like all the people or the sirens from emergency vehicles. She's o.k. at small town parades, but big city parades are NOT her cup of tea! However, this year I'm going to try taking her to the Hollidazzle Parade. I've wanted to take her for years but the weather is never quite good enough for me her. This year it ends just two days after I get home with Axel. I hope we can squeeze it in!

And do you know what happens after Thanksgiving? The Walt Disney Christmas Parade, of course!

Wednesday, November 24, 2010

Saturday, November 20, 2010

We really are still alive!

Totally boring blog post alert.

It has been insanely busy around here. In just eight days (only 8 more days!!!) I will board a plane for Eastern Europe to go get our new son, Axel! Just typing that cause 5 more hairs to fall of my head. Needless to say, there has been much preparation involved, and as my travel date gets closer, plus throwing Thanksgiving into the mix, I'm having a hard time not freaking out. Dean and Angela are thankful that my state of panic has been mostly internal!

The other night I was frantically trying to do SOMETHING about our laundry room. Its a big word...called "O.R.G.A.N.I.Z.A.T.I.O.N". (really...not so much organizing, as just getting the laundry caught up.) This needs to happen before I leave the country so Dean doesn't have to think about anything. Also, because the last time I came home, I discovered in the three weeks I was gone not one stitch of laundry had been done. Ummm Angela has A LOT of shirts, but she does not have that many pairs of pants! I shudder when I think how many times she wore various pairs, and what was on them! Blech. Well, that can't happen this time, because part of my organizing was making sure all of Angela's laundry was washed and put away, (I don't have to go far! LOL) AND I got rid of 2 bags of clothes! She still has lots of shirts (though she pointed out to me there is a noticeable lack of stripes.) but only 4 or 5 pairs of pants, and some of those don't fit right or she doesn't like them. (she has just lost a lot of weight, and I'm still trying to find the right size/fit for her new shape.)

Anyway, while I was working on that, Dean and Angela were upstairs doing Dean and Angela things. Angela likes to close herself into the guest bedroom where the closet doors are mirrored. iPod in hand she will stand in front of the mirror to give "concerts". On her way down the hall to that room, she stopped in front of Axel's room. She froze in the door way. "Dean! DEAN! C'mere! You gotta see this!"

Dean went to see what the fuss was about. "Look Dean! Axel's room! There is a bed, and a dresser, and blankets, and pillows, and clothes!" She went to the clothes, which are folded on the bed waiting to be packed for the trip, and picked up a hooded sweatshirt. She held it up in front of her. "Look at Axel's shirt Dean!"

Umm...Axel's room has been done for over a week, and Angela has walked past it every day, but clearly she was just now *really* seeing it for the first time. She looked at Axel's new shoes, and his pj's that she helped pick out several weeks ago. Ignoring Dean, she walked out the door past him and returned with her iPad, and gently closed the door in Dean's face.

Ummm...Angela has a new favorite room.

Awhile later, after Dean told me the story, I poked my head in. She hadn't heard me open the door. There she sat on the floor with the iPad in her lap, watching a Signing Time app. "Whatcya do'in?" I asked.

"Practicing signs for Axel. When Axel comes home I'm the big sister. My job is help him learn signs. Go away please. I'm busy here."

Oh, life is gonna get interesting around here.