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!"

Tuesday, October 28, 2014


This post courtesy of Norco (pain meds) so I claim no responsibility for errors or inappropriate content.

If you are ever visiting with me in person, and I offer to show you my boobs, don't freak out. They're no different to me than my knees now. I forget that is not the case for whomever I speaking with! LOL

First I had an important meeting in the morning, then race home to get Dean.

We arrived at the surgery center exactly on time, check in took just a second and we were brought back to the pre-op area. The nurse came in to do her things and go over the list of things I was scheduled for. She got to "bilateral nipple removal" and I said. "I've decided to keep them for now."

Then my surgeon came in. She told me the fluid she aspirated from my right breast last week came back with infection and they cultured it to make sure they're treating it with the right antibiotics. However, because we're now opening that area it is very possible I will develop much more significant infection so I will need to make weekly visits until I'm past the risk period.

Then I told her I decided to keep my nipples. She was ok with it, however she pointed out the problems with my left nipple - the one that pointed west - and why she thinks it will be a problem when I have my exchange surgery in a few months. So, with that, I said goodbye to my nipples yesterday.

In surgery she first started on my left breast to avoid spreading infection from the other side. She cleaned up a LOT of scar tissue. She also ended up replacing the tissue expander on that side as a precautionary measure due to infection risk. She also removed the nipple.

On the right side there was even more scar tissue than the left, which is what pulled the tissue expander  over under my arm. She drained a lot of fluid out, removed the nipple and replaced the expander.

After surgery I was in A LOT of pain. A 9 or 10. They gave me another boost in my IV to get me home (this was an outpatient procedure) but ti didn't really cut it. My doctor came to check on me and offered to send me over to the hospital because my pain level was too high. After discussion with Dean (because I was not clear headed) she gave me a written script for some really strong stuff and bump though my IV to get home. Unfortunately there were problems filling that script and my pain level was climbing. Eventually we got it sorted out and I was able to sleep the whole night.

This morning I'm feeling much better. Pain level is very tolerable and I just took my next dose of meds. My range of motion is already better than it was before surgery! All that scar tissue was causing a lot of problems. But today I can raise my arms over my head, and the "iron bra" sensation is gone. Well, at least I'm not noticing it with pain meds on board.

In the end, this surgery was not only necessary because of the infection and ruptured expander, but so very much a relief getting all that scar tissue removed.

I have to add a HUGE thank you to our friend Roc! She got all our kids off buses, made dinner and generally did an excellent job of keeping the kids occupied. Thanks so much Roc!!!

Sunday, October 26, 2014

Here we go again

Tomorrow I get to have have surgery again. Yay me! (said dripping with sarcasm)

Two weeks ago I went in for fills to my tissue expanders. My plastic surgeon noted that my right expander had shifted some and I also had a seroma.  While she was able to add 50cc to the expander, she also drew off almost that much from the seroma.

One week ago today I noticed the incision line on that side, which was well healed, was starting to look different. Several years ago Angela had a series of surgeries and infections, and I recognized that my scar line was doing the same thing. It was getting slightly wider, had changed color just a tiny bit, and I could see very small patches of yellow behind it. Yellow is fluid collecting.

On Weds last week I went in for a fill but knew I wouldn't be getting one. My surgeon took one look at my right side and declared a problem. She tried to pull fluid out of the tissue expander but there was nothing when there should have been about 175 cc. The expander has ruptured. The seroma is also quite large now.

We tried to get surgery scheduled for Friday last week but we just couldn't get it done. Instead I'll be having surgery tomorrow (Monday) morning I'll be having surgery to 1) remove and replace the ruptured expander 2) clean up all the tissues 3) remove some of the scar tissue that is causing me to have very limited range of motion on that side. We discussed also removing my nipples since she'll be there anyway. I had said I wanted to do it, and then I changed my mind about 500 times since then. I will have another surgery sometime in February to exchange my expanders for implants so I might just wait until that time.

I'm very anxious for tomorrow's surgery. The tissue expander is now all the way under my arm with a large collection of fluid. The bulge is about the size of a softball. I've been extremely uncomfortable and unable to sleep. Time to get this fixed! 

Friday, October 24, 2014

First Day of School 2014

I know, we're two months into school. You'll cut me some slack this year, right?

Angela didn't get her pictures taken on this morning. She was in too much of a hurry to get out the door. She loves school!

Axel, aka "Joe Cool"
is a big 7th grader this year.

Abel. I have no idea why his glasses are all crooked. 
He's a 5th grader this year.

Asher, always hamming it up for the camera!
Ash is a 10 year old 2nd grader.

These two are pretty good buddies!

Dad takes the kids to their respective buses every morning, 
watching to make sure even those who are "independent" 
at the bus stop remain safe. 

Audrey didn't actually start school the same day as the other kids, 
but she took her place at the picture spot anyway.
I'm not really sure why, since she seems to hate the camera! 

After about 25 times I started singing my "Mom is going crazy" song.
Audrey loves music. If only I had thought to sing sooner! 
When she did start school, it was as a
10  year old 1st grader. 

Here we are at the end of October.  We've had a few challenges, and one change of school, but I think we're on the right track for everyone! 
Here's to the 2014-2015 school year

Sunday, October 19, 2014

They're just words

The words of my life:

Down syndrome
cricopharyngeal Achalasia
gastrostomy tube
side effects
inframammary fold
tissue expanders
PET scan

Twenty words or terms that carry so much weight, at various points of my life dictating daily activities. While these words have certainly been the roots and stones causing me to trip along life's path, they certainly do not dictate my direction.

As I encounter each of these obstacles I am reminded that God allows for life's lessons and learning to happen. It is my job to pay attention to what He is showing me. There are some lessons I will recognize in the moment, others that will take years and come to me in an "Ah ha!" moment. I am sure there will be plenty of lessons I struggle to recognize. In my head exists a list, and on the day I stand before the Lord I will whip out that list and say, "Umm God? Ok, you know that one day when I was standing in line at the grocery store and…? So yeah…Umm ...What exactly was the purpose of that little incident?"

What are the words of your life that cause you to trip and stumble?

Friday, October 17, 2014

Senior Picture Time!

I cannot believe that Angela is a Senior this year. It has been amazing to me watching all of my kids grow up, but I won't lie, watching Angela has been extra special. From a tiny 4 lb baby who wasn't supposed to survive to the beautiful young lady I get the pleasure of hanging out with every day! Thanks so much to Patty Zweifel Photography for taking such beautiful pictures of our girl!

Enough of that, on to pictures!

This is the one we chose for the yearbook

Saturday, October 11, 2014

Where have they been?

It happens all the time.

Everywhere we go people know her.

They're usually in crowds.

"Hi Angela!"

"Oh my God! Angela!" followed by their fake teenage girl hugs.

Girls I have never met. Pretty girls. Popular girls.

Girls who have never picked up the phone to call, or invited to a movie give my child hugs.

I stand by silent.

The same conversations have been happening with their parents for years. It happened again today at school conferences. Twice, in five minutes, almost identical conversations.

"Oh, you must be Angela! My daughter talks about you all the time! She just adores you. She says you're one of her best friends."

The first time we said our pleasantries and walked away. I turned my attention to papers in my hand, refusing to be annoyed.

The second time I stood. Still. I looked the mom in the eye. The words screamed in my head.

"Really? She talks about Angela all the time? Have you ever asked her why you've never met this girl? Don't "best friends" do things together outside of school? Have you thought to encourage your daughter to do things with my daughter since they're "best friends"? Please don't patronize my daughter. Please don't let your daughter patronize mine."

The words pounded against my clenched teeth and pursed lips as the mothers continued their conversations with Angela. I kept them there. To myself.

They don't know. They can't know how my child hurts. Do those friends think she doesn't see? That she doesn't hear? I was told today that Angela knows every home or away game the football team plays, even though she hasn't been to a game in two years because who wants to go to a game with their mom? She knows who won, who lost. She knows who the popular players are. She knows all the cheerleaders. She pays attention to all of it. She pays attention to who is dating who. She knows everyone. She wants nothing more than to be part of them.

She knows when she is left out.

She knows all of it.

Wednesday, October 08, 2014

Tissue Expander Fill

Today was the first of what will be many fills to my tissue expanders. If you're on my Facebook you know by my status this morning I was having a lot of anxiety in anticipation of this event! I'm still in a fair amount of pain with occasional severe shooting pains. Those shooting pains happen when the implants rub up against a rib or muscle. I just couldn't imagine adding more pain to what I already have.

Here is what the tissue expanders look like. The backside is hard plastic. The black circle is the port where the needle is inserted to add fluid.

This picture illustrates how the implants are placed in the chest behind the muscle. You can see how the plastic edges would rub against the ribs.

Here is what the fill process looks like. As you can see, this woman is nearly finished with the fill process.

I am happy to say I had myself all worked up over nothing! Because the skin on my chest has absolutely no sensation, I didn't feel the needle stick at all. The doctor put in 150 cc of fluid and all I felt was a slight tugging sensation on my chest. She was only able to fill one side. The other side is still draining a bit and has a lot of swelling so it will wait until next week. I was told by tonight I will be sore and may have some muscle spasms so I took a muscle relaxer right away. So far tonight I'm a bit sore but nothing like I expected.

And then I came home and did something I haven't done in a month. I went to take a nap, and sorta kinda laid ON MY SIDE! YAY ME!

Thanking God for this small break!

Next week: Fill number 2, and a step closer to done!

Tuesday, October 07, 2014


I have so many things I want to tell you. I would even be willing to post pictures just to give you a bit of perspective, but that might be taking things a bit too far.

So, I will tell you this:

If you are having a really bad day, and you feel like the world is ganging up on you, I want you to look down and take a peek inside your shirt. See down there? See your breasts? (and this includes men!) Do you see your nipples? Are they still attached? If you nipples are still firmly attached, and they are not threatening to FALL OFF, then tell yourself, "Things could always be worse. I still have nipples."

And "worse" is a relative term. I am still walking, talking and breathing. Breasts are not what keep me alive, but they are part of my fight at the moment so that's where I am. I'm about ready to stop fighting for my nipples in my quest for pain free days.

And that, my friends, is your bit of breast cancer awareness for today. 

Wednesday, October 01, 2014

Awareness Month: Down syndrome

My previous post was about breast cancer awareness. I am reminded of the existence of breast cancer every day. I try, though not always successfully, to not let breast cancer rule my life. Because every morning I look around the breakfast table at 5 sets of eyes who greet me with smiles no matter how crappy I feel due to my treatments. Every morning I get a hug from each of these 5 kids. We go through our morning routine, I give them a hug and send them off to school just like I have been doing with my kids for 28 years now.

I often have to remind myself these kids have Down syndrome. 

The eyes of my kids are captivating. They each hold a story with details I will never know 100%. I cannot know what it is like to have Down syndrome.  I DO know that every day my kids' lives are filled with the same experiences as their same-age peers. They have friends, they have spats with friends, they have a love/hate relationship with their siblings, they have foods they like or dislike. They live life to the fullest just like every child their age.

Our kids with Down syndrome are just as amazing as our other kids.

Awareness month: Breast cancer

It is October 2014. It is Down syndrome awareness month and it is also Breast Cancer Awareness month. Where do I start????

Lets start with Breast cancer this year, shall we? We all know that breast cancer exists! Every month is breast cancer awareness month. Ever day when I look in the mirror, or take a shower, or glance down, I am reminded how breast cancer has affected not only me, but my entire family. There is no escaping it. But, that doesn't mean I buy into pink.  Some yes, some no. Yes, the pink ribbon has become the symbol for breast cancer, but before you get involved in activities and events promoted by various breast cancer organizations, check out their stats. What percentage of their money raised is actually given to the support of people with breast cancer, or to research for a cure for breast cancer?  How much of the money raised goes into overhead? Just because they have a big name does not make them a good place to put your money. Pink has become a great marketing tool for many organizations and businesses. People think if it's pink, they must be doing good things with that money. Not necessarily true! Do your research, ok? We don't need awareness events, we need research. We don't need "feel good" events, we need research.

Did you know that the survival rate of breast cancer has NOT CHANGED in 20 years???? If the research was being done, this statistic would no longer be true.

 Did you know there are 14 different types of breast cancer?

Did you know that "early detection" of breast cancer is a bit deceiving? Most breast cancers have been there months -or in my case years - before they are actually diagnosed.

Did you know that 76% of women who develop breast cancer have absolutely NO risk factors? All women are at risk!

11% of women diagnosed with breast cancer said pain was symptom. I am one of them. In fact, it was my first symptom. It is pain that lead me to find my lump.

There are approximately 232,670 new cases of breast cancer in women are diagnosed in the US every year, and 2,360 cases of breast cancer in men. Approximately 40,000 women and 430 men in the US die from breast cancer every year. 

While mammograms are helpful in diagnosing breast cancer, the most important thing you can do is know your breasts! Know how they feel and how they look so you are aware of changes when and if they occur.