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!"

Monday, September 30, 2013

It doesn't aways "just" happen

When my big kids learned to talk, it just happened before my eyes. I have a video of Tyler as a newborn and Noah 15 months old. Noah is jabbering away, "Mommy? Watch me Mommy. See mommy? See Tyler baby?" I didn't teach him to talk,  he just did it. Tyler had a tough time with speech because of undiagnosed hearing loss for several years, but once we got that figured out and got minimal speech services from school, his speech took off.

And then there are our Serbian American boys. Speech has not come easy for them. They, and I, have had to work extremely hard and for months at a time for every sound that comes out of their mouths. Instead we push for language and communication which comes in the form of sign language. Talking is a bonus.

Axel is saying lots of phrases now, and is starting to be able tell me things that happened in school. Usually that a classmate or teacher was out sick, or what game they played in phy ed. The important stuff, you know. ;-)

But today has been a day of firsts here in the language department.

This morning as he was getting ready to go to the bus, I told Asher, "Say bye." and he looked right at me and said clear as a bell, "Bye mom." Dean and I both about fell over! A few minutes later I told him to say it again, and he did it, again, perfectly clear. "Bye mom!". Oh his voice is music to my ears. Not even two years ago, Asher came to us completely silent. If you've never met a silent child, it is really hard to describe just how silent they really are. And yet Asher has been able to communicate with us quite well. But it's coming...the silence will soon come to an end.

Later in the day Abel and I went to the grocery store. As we got out of the van I said, "Here's the grocery store. We need some things for dinner." Abel replied in sign, "Bananas eat please."

People, this is HUGE!! This is more than him stringing three signs together, which in itself is awesome. Oh it is far more than that! First of all, he demonstrated that he knows the FUNCTION of the grocery store. He knows there is FOOD in there.

It means he UNDERSTOOD me when I said "Lets go to the grocery store."

He made a request for something that was out of sight. Bananas. He knew that in the grocery store there are bananas and we could buy them, bring them home, then eat them. And he requested to do just that!!! You better believe I let him lead us to the bananas and put some in the cart!

Abel came to us just five months ago with nothing. He could mime some things and that was it. He knew virtually nothing about the world around him. His time was spent destroying everything he could or trying to run away from caregivers. Just five months and he has gained 2-3 years in communication skills.

If you are parenting typically developing kids, please...please don't take for granted the fact they just learn to do stuff all on their own. Sometimes...sometimes there is oh-so-much work involved! But I can tell you, it's the best work I've ever been asked to do! 

End of the month Catch Up!

I'm not sure if I will ever be able to get the blog caught up on all the things that have been going on in our lives. Its just been crazy busy!

Three of the kids started school. Angela, Axel and Asher are all out the door by 8:00 a.m. We've been working on getting Abel's assessments done so he can start school too. We have an IEP meeting set up for the end of this week and I'm hoping he will start a week from today. He will only be in school for a couple of weeks before having surgery to have his tonsils and adenoids removed, but it will give school a good idea about the person they need to hire as his 1:1 assistant. Like Asher, Abel will  have an aid who is fluent in ASL. It will be nice for the support staff that the two boys are in the same school because they can possibly switch kids for half of the day. We'll see!

Angela started soccer. Axel has one more year before he can start playing. I think he's excited. The two kids also "started" cheerleading. I just have to get them to a practice!

Abel had minor surgery to have all of his dental work taken care of. He had 5 teeth pulled, the rest cleaned and a couple restored.

Although it was minor, he had a rough time coming out of anesthesia. He was very agitated and scared. This helped me realize when he has his tonsils and adenoids out on 10/22 that we need two adults present!

Axel will be having minor surgery done next week. Both Angela and Axel go back to the eye doctor tomorrow. We'll see if the three days Axel's stent was in was beneficial to him or not, and if Angela's stents are ready to come out.

This is my favorite part of watching for the kids' buses each day. Its our one little spot of color on the front side of the house. Next year there will be far more!

Summer is coming to an end. The humming birds are gone. I thought my tree frogs were gone too, because we haven't seen them for a couple of weeks. Then one day I was collecting seeds off some of my flowers and there was one little green guy hiding. Can you find him?

Lets get a little closer.

Here he is!

On Thursday 9/26 I flew to Houston, TX for 20th anniversary gala of Cherish Our Children International (COCI - sounds like Kohsee) It was an amazing event, and I got to be away from home for a whole 48 hours, 18 of which was spent in airports or airplanes. Still, it was a great and thanks go Dean for letting me go and Tyler for helping keep the ship afloat! A special thanks to COCI and Mary Borojevic for getting me to the gala! The purpose of the gala was to celebrate 20 years of serving deserving children around the world, as well as to raise funds for continued work. It was pretty amazing to see some of the projects highlighted! The keynote speaker was Dr. Mark Kline, physician in chief of Texas Children's Hospital. He has been involved with COCI, working with the children of Romania since the early 1990's. I was asked to speak and had 90 seconds to tell my story and involvement with COCI. Here is what I said:

The Useless Eaters 

Hitler’s term for people with disabilities.
In 1934 Hitler and Stalin did their best to eliminate the useless eaters from the planet. Most in Europe were killed by lethal injection before they had to suffer. The war ended but the children remained locked away. In 2013 the situation is only slightly better. Children with disabilities, still locked away behind institutional doors, continue to die of starvation, dehydration and severe sensory deprivation.
 17 years ago my daughter Angela was born, bringing with her the surprise of Down syndrome. Her arrival into our lives was life changing, but I knew she was here for a greater purpose, one that would come to be in 2010 when I was made aware of the conditions children like her suffer every day of their lives in Serbia. We added Axel to our family, soon followed by Asher in 2011 and Abel in 2013. It is for these children COCI Serbia works for change.

My new friend Angelia, me, Mary Borojevic from COCI-Serbia. Don't they look like movie stars?

Axel loves to do dot-to-dots and simple mazes. Last week he came home with this one. I had to look at it twice.

Axel got a new fun toy. He loves it! Dad had to show him how it's done. ;-)

Thanks Stephanie S. for telling me about the great Just Between Friends sale!!! I will absolutely go back for the spring sale, and maybe get rid of some stuff myself!

More nature. We were outside one evening and the yard light caught this guy just right. I've never seen it before. He's huge; about 4 inches long!

He got tired of me harassing him so slowly made his way to another flower. 

Thats it! I think I am officially caught up for the month of September! October is Down syndrome awareness month. I have never been able to meet the 31 for 21 blog challenge so this year I'm not even going to try. But I WILL try to get some Down syndrome related posts up! 

Wednesday, September 25, 2013

Catching up: Eye surgery

The next few posts will be catch up posts. If you follow me on Facebook then you have already seen some of these pictures and gotten some of the details. But if you don't, then it'll be all new for you. Lucky you!

So, on August 29th, just a few days before school started, Axel and Angela had some minor eye surgery. Angela is missing tear ducts in one eye. Several years ago she had reconstructive surgery to try creating a duct but it didn't work, so this surgery was another attempt to work on that eye and also to clear the duct on her other eye for the fourth time.

Axel had one eye that was a mess. Often at the end of the day he would look like this

Not only was the tear duct blocked on his left eye, but he had lashes growing into it that were constantly scratching his cornea. Not fun, and just plain miserable. 

So to surgery we went! 

This was Axel BEFORE the happy drugs. (see how watery his eye is?)

And this is Axel AFTER the happy drugs

We got some hats to play with. The child life specialist sent us home with an entire bag full of hospital attire. Enough for all four kids! 

Then there is this chicky poo who was so excited to be having surgery. She is just goofy! She did NOT need happy meds before surgery. ;-)

Angela letting Axel know it's gonna be ok. 

The drugs were working well!

Angela left first. 

Axel waited his turn. 

Happy Axel. He sounded drunk. LOL

Angela came back from surgery groggy but chatty as usual. She's talking about surgery on her eyes. We had to cut it short because she had a coughing spell.

Angela has two stents. The one in her right eye is looped through the nose, the upper duct then lower duct and back into the nose. The stent is tied way up high in the nose. Her left eye is missing an upper duct. For the second time in her life the doctor tried to create an upper duct but she just doesn't have enough space for one. That means instead of being able to loop the stent through the system, hers ends at the lower duct. It has a "shoe", which is like a flat piece, holding it in place in that duct.

The day after surgery Angela pulled her right stent partially out. Eventually it was way over the cornea of her eye.

The four kids and I took a trip to the University of Minnesota where we spent 2 hours in the waiting room waiting to meet with the specialist. (he was in surgery that day.)  to see if he could pull it back in where it belonged.  He dug (and she tolerated the digging) WAAAaaaaaaay up in her nose to get hold of the stent and pull it back down where it belonged. 

Two days later, the eve of the first day of school, Axel was taking a shower. I went into the bathroom to see what was taking him so long and saw what I thought was a thread from the towel hanging off his face. Just as I reached to brush it away I realized it was his stent!!!! OMG...gross!  can you see what looks like a piece of clear spaghetti? 

I called the doctor who told me to snip it in one place then pull it out. I had NO IDEA how long these things were! I pulled...and pulled...and finally then end of it slipped out of his eye. Nastiness!!! 

Next week we'll go back to the doctor for a follow up. Angela's stents will stay in for another couple of weeks, and we'll discuss what to do with Axel's eye, and weather or not we should try to repeat the procedure. 

A few days after the doctor dug in her nose Angel developed a staph infection in her nose. (impetigo, which is staph) that we couldn't get cleared up without antibiotics. Finally her nose is starting to clear up!!!

Next up, Abel's dental surgery!

Tuesday, September 17, 2013

Holding my breath in the morning

*disclaimer* this is NOT a paid advertisement. This is me, talking about a product I tried because of a problem we were having in the house, and this is my opinion of how that product worked for us.

Bad breath.

We have a lot of it around here. Bad breath is caused by the breakdown of proteins in your mouth that, in turn, cause the release of sulfur gas. When you are awake the saliva in your mouth breaks down the gas but when you are asleep your mouth dries out, causing bad morning breath.

Now lets talk about mouth breathers. Lots of people with Down syndrome are mouth breathers. Mouth breathing causes your mouth to dry out, leading to bad breath. In our house, two of our kids are mouth breathers and two are not. The two who are have the most horrid breath!!!! Sometimes when I walk into a room in the morning to wake up kids for school I have to hold my breath it is so bad in there!

A couple weeks ago I was listening to Dr. Radio on satellite in my car. (I love Dr. Radio!) Anyway, they had this doctor on talking about the causes of bad breath and the use of probiotics for the mouth. Lots of us use Probiotics for GI reasons, but he was talking about using them in the mouth to eat the bacteria that cause the sulfur gas that causes the bad smell.


Then the doctor started talking about a specific product called Therabreath that is sold right in our local drug store. I had never heard of it before. I stopped on my way home and picked up the toothpaste. The doctor's name is on the label so I was a bit skeptic, but Dr. Radio has credible people on so I decided to give it a try.

I bought three products. First is the toothpaste
It is a different consistency that what I usually see in toothpaste. Instead of thick and pasty, it is more like a semi-clear gel. It also disappears in your mouth almost instantly. It has a bit of a minty taste, but not as strong as regular toothpaste. It is not unpleasant and all four of the kids seem to like it well enough.

The second product was the mouth wash. 

Ok, I really didn't know if it was just overkill to use the mouth wash along with the toothpaste, but what the heck? I decided to try it for myself first, but Angela was all into wanting mouthwash like Mom so she used it as well. This is not as pleasant tasting as the toothpaste but Angela didn't seem to mind at all. Also, you should gargle with this stuff to kill the bacteria sitting in the back of your throat and around your tonsils!

The last thing I bought were the mouth wetting lozenges. 
Ok, these are *really* strong. I am not a fan of strong tasting things (I don't like spicy foods, or anything with a "kick") These are kind of a long the lines of Altoids in their flavor. The purpose of these lozenges is to keep your mouth moist, plus add more of the probiotic. I have only had a couple of these and I really can not handle the strong flavor. Angela isn't able to eat hard candy so she hasn't had them, but Axel LOVED them!!!

That first night before bed I brushed everyone's teeth with the toothpaste and Angela and I used the mouthwash. In the morning, much to my surprise, none of the bedrooms stunk from bad breath! In fact I could have a face-to-face conversation with one of the kids without feeling like I wanted to don a chemical suit! Amazing! 

I got everyone ready for school and we brushed again. When everyone came home from school I was pleased to find that their breath was still ok!!

We have now been using these products for one full week and there has been a dramatic difference in the air quality in our house, and probably on certain buses and in certain classrooms! 

So, if you or your kids are having a problem with bad breath, I am giving my top recommendations to trying the Therabreath family of products! Give them a try then come back and let me know how they worked for you. I'm really curious! 

Wednesday, September 11, 2013

Male Bonding

Last weekend Dean and Axel took off for the North Woods to do some much needed male bonding with Uncle Dave (Dean's twin brother) The plan: Catch fish, get dirty, catch fish, eat junk food, catch more fish.

Here are some pictures from their weekend. I think they pretty much speak for themselves!

Going to the boat with a cup just like Papa.
(the first thing I said when I saw this picture, "Honey, did you notice his life jacket is too small?) 

Working hard to bring in his fish!
(Yes he's wearing his life jacket. It's under the sweatshirt.)

This is my favorite picture! It needs a frame and a wall to hang it on.

Axel also caught a couple others when Dean didn't have the camera with him. 

Going home. Do you think he had fun? 

Monday, September 09, 2013

The Big Switch

When we brought Asher home almost 2 years ago, we put him and Axel together in a room in IKEA kura beds. It looked like this:

Then we brought Abel home and had to do some rearranging, plus adding a bed. 
Then it looked like this

The boys loved their room, but I was never quite satisfied with it. I started having nightmares about the fact the beds were in front of the window and not being able to get them out during a fire. For two months I fretted about this room. In the meantime, Angela had decided to take over the spare bedroom upstairs. She has been downstairs in the pirate room since she was 11, but was now feeling left out of the party upstairs. She wanted to move back up!

I had an idea how to make all of this work, but Dean was not happy with my suggestion. Not only did it mean him giving up space, but it meant a lot of work rearranging and purging. We procrastinated. I talked about it on Facebook but could just not get  up the ambition to start the project. There was no way to avoid the fact that moving bedrooms around meant many things had to be done simultaneously. How do you clean out four closets, paint three rooms and move three rooms worth of furniture simultaneously? We didn't know where to start!

Then I realized the first day of school was coming fast and I needed to get this project done before that! I started in one closet in the master bedroom and...I swear....the house exploded at that point! We had stuff e.v.e.r.y.w.h.e.r.e! I lost count of how many loads went to Goodwill (it felt so good to purge!) or how many garbage cans were filled up.

And now it is done! I'm really happy with how everything turned out, and I am loving all our new spaces!

The Boyz Room

The boys have the same decorations, just in a different, much bigger room. I explained to Dean there was no rule that says the parents must sleep in the biggest bedroom. We don't use the closets in our room for clothes (we have a family closet in the basement by the washer/dryer) so our closets tend to just collect junk. But the boys could use those two small closets for the wide variety of toys we they have. Toys for kids from toddlerhood up through 6-7 years old. Here is their new space.

The boys love the starts on the wall, and when the light is right they reflect all over the room!

The dogs like there is room to lay in there while the boys play.

Angela absolutely LOVES her new room. She spends a lot of her day hanging out in there, going through year books and laying on the somatron while she plays on the iPad. I'm not sure which part she loves the most: the mirror butterflies all over the walls or the lights on her bed. 

The somatron takes up a lot of space in her room, but is only temporary until our basement flooring is in, then it will move down there to the sensory room.

The blue in the other pictures is a bit washed out. This picture is closer to the true color. 

Our room is pretty plain. We moved into the room the boys used to share. Because we're in a smaller room we also downsized from a California King bed to a Queen. This bed change is working great for Dean, but not so much for me, as I frequently find myself hanging off the bed!  I don't think we'll last long in the queen. LOL