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, December 18, 2017

Dear Blog: May 2017

Dear Blog,

May was so busy that I hardly had time to take pictures!

Memorial Day we visited Ft. Snelling National Cemetery
where my maternal grandparents are buried together. The last time I was there
was my grandmother's funeral when I was 13 years old. 

The biggest event of May was Angela's graduation from her transition training program. Students with disabilities can attend school until age 21. At 18 Angela graduated from high school with a certificate of completion, then attended two years of the transition program and received her diploma. This was such a bitter-sweet day. All these friends in the pictures we have watched grow and learn. We have watched the struggles in their lives, and we parents have supported one another through the good and the bad. There were a lot of tears on this day!! 

Standing next to Angela is her good friend Laura. 

Angela's friend Karl. 

her friend Jasmine

And this is Angela's friend Eric. They have been friends since we moved to the area, when Angela was 7. When Angela was younger and having a lot of behavior problems, she would often go help out in  Eric's classroom. She ADORED Eric! ADORED!  And Eric...for years staff had said whenever Angela walked into the room Eric would light up.  When Angela went to middle school, Eric went to a different school and she lost touch with him. She talked about him often. Then the first day of her transition program, Angela came home from school BEAMING!!!!  

"Mom!! Mom!!! It's ERIC! He is BACK!!! He is at my school mom!!!" She was soooo very happy to have her friend back. 

At her 20th birthday she said "When I turn 21 Eric and I are getting married." She never changed this story. Not once.

Then our summer was very busy, and the 21st birthday came and went.  The kids graduated from their programs and went their separate ways. Angela often wanted to visit Eric, but I never made it happen.  I never had time. Or it wasn't convenient. I didn't make it a priority.  I am so sad to report that Eric passed away on November 25 2017. Angela was so very sad to hear this. And we couldn't make the funeral.  

I hope Eric knows how much Angela adored him. And I know that some day, when they meet again in Heaven, he will be one of the first to receive one of her amazing hugs. 

Angela's teacher Jennie. 

Waiting for her very last school bus!! 

Angela's favorite driver Daryl. This guy was so special.
When Angela was very sick from her liver, he was very concerned
about her. Angela misses Daryl a lot! 

One of the other things I did this year was 
start running again. The last time I ran seriously was before Angela was born.
So here I was...turning 50...and running! 
I started "Running for Amos" in an attempt to raise funds
toward Amos' adoption. Some of you were a 
huge blessing to us once again, and helped us raise
$2500. We are so very grateful for your help and love! 

So one day I got an idea. We had a small above ground pool. We really wanted to put in an in-ground pool, but we can't on this property. So I found a huge, used, above ground pool. But, I struggled with where to put it. This was one of those projects where Dean said, "You're on your own with this one!" day I decided the steps on the deck needed to move. My son Tyler and his friend took them off for me. The steps used to be where that piece of plywood is nailed to the railing.

And then we had no stairs on the deck until I could figure out the next step. ;-) 

And that's the end of May!!

Sunday, December 17, 2017

Dear Blog: April 2017

Hi Blog!

Four days in a row. I know, I'm stunned too. Never say I'm not determined! Our family is really busy, and April didn't disappoint in that department. Here are some highlights:

I did another self-update. 

Always willing to give her insight, Kat made herself available. 

Angela enjoying a good book. She wasn't feeling well this day.
You can tell by the dark circles around her eyes. 
We have learned over the last couple of years
these dark circles are a big red flag. 

Sure enough! Later that day we were in the ER. 
Her ammonia level had skyrocketed. 
Do you remember Gladys the giraffe? 

 We repainted the entire interior of the house. 
That's when I got the idea to white wash the brick. 
I'll never do that again!
I love the look, but what a pain in the neck. That and the 
ceiling is really high and I hate ladders! 
Unfortunately I didn't listen to the painter we hired 
for the walls. I had a specific color in mind. 
Once it was all done, it doesn't look right in certain rooms.
I hate it, actually, and want to re-do the main living areas.
It looks great in our bedroom though! 

We took a family trip to Amos' sending state
and visited the local zoo. We had the entire place
to ourselves! The weather was great and the 
kids really enjoyed it! 

The next day we had court to finalize Amos' adoption.

He is SO handsome! 
We were all ready for court, just waiting to be called in.
Then our attorney came out, "I have bad news..."
The way things were handled on the other side caused 
a lot of confusion for the attorneys and judges involved.
The judge didn't feel comfortable signing the order
so sent us packing. Back to Minnesota we would go,
where the had to start the ENTIRE process over again! 
Yes, that's right. We paid for this adoption TWICE!!! 
We still owe the attorney in the sending state $2000 
that must be paid by January 1st. 
But that smiling face? Totally worth it! 

Got Angela checked into Masonic Children's Hospital
at the University of Minnesota
where the miracle workers attempted to fix her liver once and for all! 
It seems it was a success, and within hours 
we had our spunky, energetic young lady back! 

 Finally got Audrey's bedroom done. 

Before we could blink, it was Easter! 

Big brothers Noah & Tyler 
were in charge of hiding the eggs. 

This guy turned 14! 
So handsome.

Abel requested a chocolate cake.
Hyvee, which is going to take over the world
along with Amazon, makes an amazing truffle cake.

In case you were wondering, your eyes  have not been
playing tricks on you

We welcomed new great niece
Norah into the family.

Dean went back for his second knee replacement. 
Six weeks. Two knees. New pain-free life.

Two little people had been having some problems getting along in school. 
They are both in the same class. Actually, they WERE the class last year. LOL
Anyway, one day I told them 
"If you have a good day, you can have candy when you come home."
This picture is self-explanatory.

Sigh...little girl growing up.

Angela and her good friend Laura love to shoot hoops.

And Asher just likes to hang out in the trees.

Angela's friend Laura turned 21. We loaded all the young adults 
and the moms in our giant white van
and headed to The Metropolis in Eau Claire, WI
for an overnight water park party. It was GREAT fun!

I started a city skyline project in Axel & Abel's room.
(FYI, it's still not done. )

Audrey started  having some suspicious episodes 
that looked very much like seizures. 
She had and EEG done which did not show 
seizure activity, but did show some abnormalities 
in the brain waves. Not really anything we can do about it.

Abel was having a lot of problems in school, 
so I ended up pulling him out and homeschooling him 
the rest of the year. He did really well. I had hoped this would
break the behavior cycle he was on. 

We attempted Miracle League baseball with these four.
Unfortunately we discovered it was  not a good match for us, 
but they sure looked cute in their uniforms! 

Saturday, December 16, 2017

Dear Blog: March 2017

Dear Blog,
March was a really busy month for us. Sooo many things! Here are just a few of the highlights:

The first big event was for this guy. He received his first new knee! 

Just as Dean was being wheeled into surgery, I got a call from Angela's school. She told them "My ammonia is too high. I need to go to the hospital."
Umm what? We fixed her liver already! But there was that aspiration pneumonia back in Feb. 
So much to the annoyance of Dean's surgeon, I left that hospital, drove to Angela's school, picked her up to bring to the UofM Children's hospital, where we discovered she was right! Her ammonia was elevated. WHY???? Why when we had already fixed her liver? I brought her home where
a friend met me to stay with her, and I was back to Dean's hospital just as he was being moved from recovery to a room. WHEW! Still...we were going to need to investigate this ammonia business. 

Last month I got my Sous Vide. I started eating steak 
almost daily. LOL Let me tell you, these are THE MOST AMAZING steaks! 

My dear friend, and author, Barb Althoff published a sign language book last year.
She was getting ready to publish the second and had several of
her former students help with the photo dictionary at
the back of the book. In this pic, Axel is signing "calendar". 

Working on our scrabble wall. 
Since I am queen of unfinished projects, I'm hoping
to have it completed by February 2018. ;-) 

Angela, back in the hospital to discover the reason for her high ammonia. 
It was discovered the patch put in 11 months before had opened a bit, 
allowing too much blood to escape from her liver. That means it couldn't get
filtered correctly, causing her ammonia to go up again. From here we 
scheduled another repair that would happen a few weeks out.

Dean and his twin brother Dave 
celebrated 60 years on this earth! 

Some days the hallway time-out spot was 
a  high traffic area. 

That medication distribution system
that I put together last month? Done! 
It is the most organized cabinet in the house. 

Kat is always nearby to keep my company.

See! Always close. 

Angel and Axel attended a performance
by Highland Friendship Club members. Just above
Angela's head is our good friend Katie, who was 
in the performance. 

I joined the rest to world waiting
for April the Giraffe to have her baby. 

March was a busy month. 
Thankfully Audrey was well rested!