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!"

Saturday, March 30, 2013

Mish Mash

This is where I go through pictures from the past month or so to create something entertaining for you.

It is pretty obvious that Asher loves having a daddy to call  his own. Mom? Yeah, she's ok but the daddy belongs to him! 

When we got Axel two years ago we had his heart checked out. He had an enlarged aortic root, and we should come back in 2 years for a re-check. A couple months ago we noticed his color changing, particularly in his hands and feet. Since we're at that two year mark we had his follow-up echo this week. Everything looks perfect  now, so we don't have to go back for 5 years. The color changing? It's a DS thing. Angela does it too, only her hands turn reddish purple, not gray like Axel's. Mostly I think I just needed a diversion from worrying about adoption related stuff. 

Axel and Angela both have blocked tear ducts. Angela had stents put in years ago but she pulled them out after about two weeks. Anyway, they both needs stents now. He often comes home from school with his eye all read and swollen. By the next morning it's gone. I was hoping to get it done this month before we leave, but I couldn't get it scheduled. We'll get it scheduled when we get home, after we've checked to see if B needs it done too.

Asher at the therapy center.

Angela, who hates to color, decided she would teach Asher how it's done. 

Soon B will have someone to put him to sleep just like this!

Wednesday, March 27, 2013

Hi There!

I have a few new readers recently. If you're new hear, I am currently dividing my time between this blog and my adoption blog. If you haven't yet added it to your reader, well I sure wouldn't want you to miss anything! You can find my adoption blog here. 

Tuesday, March 26, 2013

Cooking with Axel

Tonight was waffle night here, and I love to help! I love to help with pretty much anything, but if it's in the kitchen, I'm in heaven!

First I washed the strawberries.

Then cut the tops off. I was careful with the sharp knife!

Put them in the grinder to make sauce. Asher gets really excited when the grinder comes out because he knows his food goes in here. 

I poured it into the bowl.

Mom had the waffles ready. First I dished up Angela's

Then I dished up Asher's. See his face? He's not happy because he thought he was going to get ground up waffles. Nope, tonight he got waffle bites he had to chew. He ate it all gone.

Then it was my turn, but I was starving! I ate four waffles, 6 strawberries, and 6 sausage links. Then, just a little bit later I had a big bowl if ice-cream! I'm going to be a teenager in August and I'm getting ready! 

Friday, March 22, 2013

Urgent Need

Please, please please go read the Kacirek family blog. There is an urgent need to change their flight status to bring their new child home. When they got to where their child is currently located, they were shocked to find her current condition.

The problem? She cannot sit in an airline seat. If she is upright she is not able to breath well. She can handle a few minutes at a time, but certainly not 24+ hours of travel time to get home. She and one parent need to fly first class in one of the seats that will lie down nearly flat.  Please, if you can, go CLICK HERE to contribute to the Kacirek family fund so they can upgrade their seats. While there are other avenues to getting them the seats they need, paying for it outright is the fastest and easiest way.

Please help if you can!

Monday, March 18, 2013

Hearing Loss

When Angela was 11 months old she was diagnosed with a high frequency hearing loss. This is the most common type of hearing loss among people who have Down syndrome.

Here's a look at the speech banana that will help you understand what that means. Please keep in mind I am NOT an audiologist. Although I understand how this all works, I'm not so great at explaining it! LOL

The numbers at the top of the chart that run from left to right measure frequency (Hz) of sounds. The numbers that run down the left side, from top to bottom are decibels (dB) - or volume - at which those sounds are produced. Looking at the chart you can see that high frequency speech sounds, at conversational volume, are produced at 25-40db, with low frequency sounds being produced in the low 50's.

High frequency sounds are those to the far right of the picture. They are sounds produced at high frequency - or pitch- these include p, h, g, k, t, f, s, th, ch, sh.

Angela's hearing loss is high frequency loss. When she was first diagnosed she tested at 45 dB for anything over 1000 Hz. That means that those speech sounds normally produced at 20 dB she couldn't hear without amplification. She couldn't hear any high frequency sounds produced at less than 45dB. That put her into the mild/moderate range of hearing loss.

Lets take a sample sentence and see what Angela can hear. How about a common direction? "Hang up your coat then put your backpack away."

Now lets remove the sounds we know Angela can't hear:

"ang u your oa en u your a a away."

This is why hearing aids for kids with even a mild hearing loss are so important. A child cannot learn to say sounds they cannot hear.

Angela has been wearing hearing aids since she was first diagnosed. Although she can be difficult to understand, she would be MUCH worse if she'd never worn them. In fact, she would not have intelligible speech at all! Well, when I went to Serbia to adopt Asher, one of Angela's hearing aids disappeared. She won't wear just one because it's very disorienting to having your hearing distorted on one side, so she's been without hearing aids while at home since then. She wears hearing aids at school, along with using an FM system, so she could at least hear in school. But over the summer, when she was without amplification at all, hear speech really regressed badly!

Insurance will only pay for hearing aids once every 5 years, and the insurance available on them is very limited so we had to wait until this month to get new aids ordered. Part of ordering new hearing aids is retesting her hearing. Oh my...Angela's hearing has gotten significantly worse. Take a look at that speech banana again. Angela's bad ear is down to 75dB, and her good ear is down to 55dB. Thankfully, with hearing aids, we can bring her hearing into normal range. We have one more week until we can pick them up!

Sunday, March 17, 2013

Boyz room, take TWO!

Last fall I redid the boys' bedroom, giving them some cool beds and creating more space. Then we decided to adopt again, and have been trying to figure out the sleeping arrangements. We have an empty spare bedroom so space wasn't a problem.

The real issue is not knowing the boy who's coming, and the fact he has spent his whole life sharing a room with 15 other kids. When we adopted Axel, he was 2 years out of the institution and had gotten used to sleeping alone. He had no problem having a room tho himself. Asher has never been on his own so I don't know how he'd do if he had a room all to himself.

Thinking maybe Axel would feel left out of the party if we moved him to the empty bedroom, we finally decided to put all three boys in one room. We looked at plans for triple bunk beds, and...well we looked at lots of different options. We ended up getting a second IKEA Kura bed.

Asher LOVES Axel's top bunk, so he's very happy to have his own now. Unfortunately his ladder is covered up so I'm going to add a set of steps for him to get up/down without climbing over his brother. ;-)

There is a fun little hiding place under Asher's bed. All the "younger" toys are in there.

 I'm still trying to decide if I'm moving some of the toys downstairs. Not all of our kids play well without direct supervision so if I  move it all downstairs, that means I'm spending more time down there as well.

 This will work for now. When we have had some time to get to know our new son we'll decide weather or not to make some changes. Angela is now bugging me for bedroom make over. She's about due, but I hate to cover up the pirates!!!

Repost: Naked in My Robe

I posted this 5 years ago today after a run-in with ice on our driveway.

C'mon. You've all done it. Throw a robe on to make a trash run, or to grab something out of your car. I, for one, will never again be caught naked in my robe. Surely if I'd been fully clothed I wouldn't be typing this entry one handed!

Let us take a walk back in time to...say...Wednesday, March 12th. At 9:00 a.m I was helping Angela get out the door...naked in my robe. You know, the kind you have to re-tie every 8 seconds? We have this horrible patch of ice right on the front step that is quite large and is head injury waiting to happen. I held her up and skated her across the ice sheet, then watched to make sure she made it down the rest of the driveway ok.

Quick, before the bus came, I turned to go back into the house. I approached the ice carefully, but as you all know, once the fall begins, you're S.O.L. I could see that my head was aimed straight for the cement step, and my immediate instantaneous thought was, "ooohh Don't hit your head! You'll be out here awhile..naked in your robe!" It must have been in that second that I stuck my arm out to...I don't know, push away from the step maybe?

The next thing I knew, 3 body parts hit the ice at once. My left hip (it's a lovely shade of green now) my left cheek (cracked one tooth that now needs to be repaired) and my left hand/wrist/elbow-all-at-once as I heard a horrible C-R-A-C-K sound. The pain told me what happened. I screamed "oh my GOD I broke my ARM!!! Oh my GOD!!! Oh God Oh God!" and then I looked up at my arm (and my hand that was where it shouldn't have been)....and passed out. I'm sure it was only for a few seconds. What woke me up was the feeling of wanting to vomit. That and the cold ice against my now-bare front side.

I tried to just breathe. From where I was laying I could see Angela standing at the bus. Good..she's safe...she didn't hear me screaming. Breathe...the pain was like nothing I'd ever felt before. Breathe...

Getting up and off the ice. Well, I'm not exactly sure how I did it. I was tangled in my robe, and my knees and good hand were slipping on the ice. Makes for a great visual, doesn't it? I managed to get into the house, but by then the world was spinning badly. I found my cell phone but couldn't for the life of me figure out how to open the darned thing. When I finally did I couldn't remember Dean's number. Oh yeah...speed dial.

(your difficulty reading this is the same trouble Dean had understanding me screaming in the phone.)

Dean: Hello?
Dean: What? Who is this? Leah? What's wrong? What happened?
Dean: You broke your arm? Honey, I'm THREE HOURS AWAY! I can't get home. Is the neighbor home?

I heard "cant get home" and "neighbor" and hung up the phone. I remembered that speed dial thing and found my neighbor's cell phone on it.

Cindy: Hello?
Cindy: Huh? Who is this?
Me: Leah can youtakeme tothe hospitalI brokemyarm
Cindy: Oh..oh..I'll be right there! Right THERE!

I got off the phone and realized all 3 big dogs are running around outside, and the neighbor isn't exactly fond of dogs. The puppy was dancing around my feet trying to trip me. I hollered for them all to come in, and got them downstairs into their kennels, carrying the wiggling puppy who hasn't yet mastered stairs in my good arm.

I climbed back upstairs and went to the front window to see Angela just stepping onto the bus, and my neighor Cindy down there as well. That's when I looked down and realized somewhere along the way I'd lost my robe. Now I was just naked, with my hand hanging at a sickening angle. I headed for the bedroom and grabbed my "comfy clothes" which would be jeans and a sweatshirt. Obviously I wasn't thinking too clearly, huh? I managed to button the jeans with one hand (making any OT proud, I'm sure!) and figured out how to get the now tricky sweatshirt on. While hollering "ow...ow...ow" I pushed my broken arm through the sleeve, then pulled the rest over my head. The thought of the pain when I did this still makes me nauseous.

I looked for my shoes, but realized one was still laying out on the ice. I slipped my toes into one shoe and tiptoed outside. There sat my shoe, in the middle of the patch of ice...well out of reach. Grabbing a nearby shovel I dragged the shoe to the safety of the cement and stuck my toes in.

About this time Cindy arrived at the top of the drive with her van, but I couldn't get to her because I had to cross that darned ice, and I told her don't even try it or there won't be anyone to get us to the hospital! Somehow she coaxed me over the death patch, and got me hoisted into her huge 15 passenger van, then asked, "Which hospital should we go to?"

We arrived at one of the area hospitals, got my arm in a sling and some drugs into my system, only to be told it would be a 4-5 hour wait before I'd be seen!!! Cindy had a light bulb moment, "One of my kids had hand surgery at this orthopedic center a couple years ago, and I remember seeing an "acute care center" sign in the building. I wonder if they do stuff like this?" A couple phone calls later (quick, before I was too loopy to sign anything) we were on our way. At least the drugs were kicking in so I wasn't in excruciating pain anymore!

This place is amazing! It's called "Tria Orthopedic Center" It's been there a couple years but since this is the only area of specialty Angela has never needed, I didn't even know it existed!

To give you and idea of the type of care a person gets there, when we pulled in in front of the doors, the concierge came to get me from the van! I was wheeled up to the intake area, and within just a few minutes was taken to X-ray. I have horrible memories from when I was 15 and broke my elbow, and having the techs force my arm into a position it didn't want to go. This tech was so very gentle, and instead of making me turn my arm all over the place, instead slanted the table and made the necessary adjustments that way. I was then brought back out to Cindy, and almost immediately brought back to an exam room.

A couple minutes later the Dr. stuck his head in. "Oh..oops..wrong room. I'll be seeing you next. But, just to let you know, you have a really bad break and are going to be needing surgery." The he disappeared.


He was back just a minute later and pulled up my xray. I had 3 breaks, a small one on the end of the ulna (the small bone on the outside of your arm) and two breaks on the end of the radious (the larger one on the inside of your arm) and would need a plate or two and some screws installed to put it back together. He asked when I had last eaten and was very excited to hear I hadn't eaten since the night before. It was now 11:00 (I broke my arm at 9:00) and they could get me in for a 1:00 surgery. Had I eaten I would've had to wait until the next morning!

But Dean wasn't there yet, and I really wanted him there before I went in for surgery! He ended up arriving at 12:40. Cindy said a quick prayer for me before leaving us, and we were so very thankful she was able and willing to help me that morning! Without her knowlege of Tria I probably would have gone up to 2 days before having surgery.

Eventually we were brought back and I was seated in a surgical chair. I had an IV placed, and was given some more drugs, and met with the surgeon. (and Dean got to see the xray for the first time. He turned white.) Then the anesthesiologist came in to give me a nerve block in arm. They did this by putting my arm up over my head sticking a v-e-r-y l-o-n-g needle into my arm pit. I felt electrical shock-like sensations zipping through my arm, and Dean said, "Oh cool!" as my fingers jumped around. That's the last memory I have prior to surgery. Dean later told me that after the electrical zingers in my fingers they took a bigger needle and shot stuff right into the bones of my arm. BLECH! Glad I don't remember that!

The next thing I remember is waking up in the recovery room, my head hanging on my chest, and wiping the drool off my chin. I asked for Dean and he appeared from some far away fog. We sure didn't sit there very long! I know I was in surgery for about an hour and a half, and we were home by 5:30!

That night was all about heavy drugs and lots of sleep. Well, really the next two days were. By Saturday I was off everything but Tylenol, which of course I had to overdo a bit, putting me back on drugs for Sunday. If you called during those first couple of days, it's likely I don't remember it, and cannot be held responsible for any promises of "I'll call you back"!

Friday, March 15, 2013

It's a Birthday!

If there's one thing our kids love, it's a birthday!

Angela knows the date of every birthday in our family, and possibly your family too. Today is Dean's birthday and Angela has been counting down for several weeks. She doesn't even keep her motive secret though. The whole purpose of knowing everyone else's birthday is so she can measure how close we are to her birthday!

The kids made cards for Dad.

It's been awhile, but Dean and I are going to try something we haven't done in ages. That's right, we're going OUT. With "grown ups". We're meeting up with Dean's twin brother Dave and wife Sandy. Dean made something from scratch for his brother.

A very happy birthday to the best friend a girl could ever ask for. Love you Babe!

Tuesday, March 05, 2013

And the sickies hit AGAIN!

The beginning of February everyone here was really sick. Well, everyone but me. I managed to escape the influenza bug this year. Asher was down just a day or two. Dean was sick well over a week, Axel a few days. Angela had it the worst of all of us because it triggered her asthma which took several weeks for her lungs to recover.

And now there is something else upon us.

On Thursday last week we were innocently going through our morning routine; Angela getting her backpack/jacket on, Axel getting dressed and Asher sitting on the pot.

I was in supervisor mode, walking through checking on everyone when I heard...I heard a noise I have not heard in 16 years. Dean had never heard the noise before and looked confused, "What was THAT?" he asked.

"OMG THAT WAS PUKING!" I hollered as I ran for Asher in the bathroom.

Yes. Yes my mind had remembered that sound correctly.

I don't do puke. I can clean up a lot of things, but puke is not one of them. When big brother Tyler was a kid he used to get carsick all the time. It started when he was just an infant, so by the time he was 4 he could independently manage his puke bucket and towels in the car. All I had to do was roll down all the windows. :-)

As I lifted Asher to the bathtub I hollered for Dean to bring paper towels. Lots of 'em. When he came back with the paper towelsI don't even think he came into the bathroom. No, I think he just threw them at me and ran. "I don't do puke" he said. Really???? So I should just leave Asher here in the mess because I don't do puke either? "Sorry kid, you're on your own with this one. We don't do puke." But I am the mom, so I stayed. Dean, on the other hand, didn't say a word and supervised Angela and Axel through the rest of the morning. You know, don't draw attention to yourself and nobody will make you deal with the puke.

There is one thing about cleaning up puke, and that is I never really know where to start. I mean, do you clean up the kid first or the floor? Since it wasn't really possible to walk in the bathroom without stepping in puke, I opted to start with the floor first. That was great until I realized - too late - that Asher was standing in the tub leaning over me.

And WHY IN GOD'S NAME did He...the same god who gave me these beautiful children - why did He give us mom's the reflex to CATCH things???? ALL things?

Eventually I got the floor cleaned up, the kid cleaned up, the tub cleaned up, and then I got me cleaned up. I wasn't really sure where to put the puking Asher now. Hmmm Somewhere that can be wiped clean, but the hardwood floor didn't seem like the most comfortable option. I laid him on his bed and images of washer load after washer load of puke bedding flashed before my eyes. I stripped his sheets and let him lay on the vinyl mattress cover. Thank you to whoever invented those! They are great for puking kids! It did look a bit like a scened from an institution, but I didn't care. I was more concerned about avoiding more laundry.

I left Asher there while I went to wash my hands for the 27th time in 30 minutes when I heard that noise again. I went running back to find Asher sitting not on his bed, but on the other side of the room and he had puked all over the carpet. Lord Jesus help me! I put him through another rapid bathing and put him back on his bed then ran downstairs to get the carpet machine.

I passed Dean who was sitting quietly in the living room, minding his own business. I must have looked like I needed help because Dean was working from home that day, but when he saw me he suddenly slammed his laptop closed and ran for his shoes. "I'm outta here!"  he said, and I'm pretty sure he was smiling as the door closed behind him.

Now, this thing...this carpet machine... is brand new. I bought it when we had a pipe burst back in November and have only used it one time. It is a whole lot of awesomeness. Yeah, well, things are a lot of fun until the carpet cleaner craps out on you in your time of need!!!!

I spent the next two hours trying to unclog tubes that I decided must be the problem, stopping every 10 minutes or so to clean up more puke. He hadn't even eaten that much in the last 24 hours, how could there be SO MUCH???

Eventually Thursday ended, as did Friday and the weekend. Today is Monday and Asher stayed home with me again. He'll be home tomorrow again too. What a lovely lovely thing. NOT!

Sunday, March 03, 2013

Soaker Pads

This post is for my dog breeder friends. :-)

Hospital Soaker Pads make for awesome whelping pen bedding! They lay flat, are super absorbent with a waterproof backing and wear like steel!! When using in a whelping pen, put down several layers. As they become soiled just pull up the top pad and you have a fresh clean one underneath!

Hospital Soaker pads also make great dog blankets to give to your puppy families. Living in Minnesota we put them in our dog kennels to soak up all the water after our dogs have been out playing in the snow.

Pads are 32x32 with a waterproof backing
Boxes of 10, discounts for multiple boxes!!

Orders shipped within Continental US only

How many do you need?

Saturday, March 02, 2013

It's Fixed!

I was receiving emails from people saying the paypal button on the KINDLE fundraiser wasn't working. After messing around all morning I finally got it fixed!!! We're running out of time to raise the last of the money we need, being short $1900, and leaving in 34 days.

Friday, March 01, 2013


Like most kids in the U.S. Angela carries a backpack to school.

A couple weeks ago I had to drop her off after an appointment. This meant taking her down to her Special Ed. classroom (which was empty) getting her hearing aids on and her FM system hooked up, then finding where she was supposed to be.  Although there wasn't anything in Angela's backpack that she needed, she still insisted upon carrying it with her. This was clearly her routine so I didn't say anything. It was a looooooong, winding walk to the other end of the school. I wasn't sure I'd be able to find my way back to the front doors! I had a hard time keeping up to Angela who was clearly on a mission go get there quickly.

Watching Angela lean into her backpack it occurred to me she wears it more for sensory input than because she needs anything in there. She likes deep pressure and "heavy" work. Some days she crams a lot of stuff in it: phy ed clothes, hockey helmet, water bottle, etc. In the summertime she often gets puts a ton of stuff in a backpack and goes "exploring" around the yard. She has nicely taught Axel how to put all this random crap in backpacks then later dump it out all over the bedroom put it away.

And then this morning happened.

It had already been a rough morning; her obsessing over the fact the collar of her shirt got wet when we were doing her hair, me telling her to stop obsessing, which of course makes her obsess more. This evolved into her refusing to leave the bathroom mirror which was about to cause her to miss the bus. "If you miss your bus you will NOT be watching any of your shows after school and I am not EVEN going to give in on that one later on!"

"Fine!" she yelled.

"Fine!" I said back.

She gave a big growl.

After realizing the world would end if she didn't watch her shows, she finally conceded with, "I need a new shirt."

"Well then you better hurry UP because your bus is coming in 5 minutes." (and we have a long icy driveway that is difficult for her to navigate.)

I haven't yet checked, but based on historical evidence, I'm sure she ripped apart her closet to find just the right shirt.

She raced back up the stairs and got her jacket and shoes on. As she slung that backpack on I wanted to know what she had in there that was so heavy.

I reached in.

I pulled out two sets of phy. ed. clothes, two planners and a folder. I reached further down and found a water bottle that hadn't been properly closed because it was quite damp in there.

And then...then I reached further, until my hand found....


A lot of it.

That's when I realized the bottoms of the folders and planners I'd pulled out were covered in it. After yesterdays vomiting episodes with Asher I was still pretty gaggy myself. OMG...this was nasty.

"Oh my God what do you HAVE in here???????"

Apparently when Angela is done with lunch she's been putting her left over fruit in her backpack. There was now both a LIQUID banana and a slimy apple at the bottom of her back. I still can't figure out why it didn't smell. A mystery that will probably never be solved.

I did what any good mother would do and threw the entire backpack and it's contents into the trash. Well, I did save her Lands End mittens because they're awesome, but everything else went out.

Years ago Angela had a clear backpack. I loved that thing because I could always see she's brought something home for me. I think it's time to go back!