I will miss you Grandma

Today my grandmother, Amy May Dorn, went to be with the Lord at 91 years of age.  

Grandma Amy 2004

My grandma Amy was loved by so many.  She was a mother of 5, a grandmother of 16, a great-grandmother of 36, and a great-great-grandmother of 2.  Wow!

Some of the Dorn Family - Summer 2006

My grandma Amy will always and forever hold a very special place in my heart.  She impacted me in a very real way and I feel incredibly blessed to have had her in my life.  As I reflect on all the wonderful memories I have of my grandmother, my heart is filled with joy even though today is a sad day.

As a child, I loved getting to spend time in the summers with Grandma on the farm.  I loved that small, yellow house in the country.  The rolling hills, the large, old trees, Grandma's beautiful garden, the barn and sheds that had all sorts of hidden treasures to be found, the playground equipment in the yard, all the animals running around, and the peaceful, secure feeling I had when I was there.  But the best part of my summers on that farm was spending time with Grandma Amy.

My grandma loved me.  And I knew it without a doubt.  She didn't show her love by buying me fancy toys or taking me to expensive places.  She showed her love by spending quality, undivided time with me, telling me she was proud of me, giving the best Grandma-hugs in the world, challenging me to always do my best and through lots of yummy food.

Grandma Amy would play cards (our favorite was Rummi) with me for hours and hours.  We would keep score and I loved when I would beat her!  I also loved that she would keep playing rounds until I was able to beat her.  The time we spent playing cards together is something I will always cherish.  I'm sure my Grandma had a list of 100 things she should be getting accomplished instead but I never felt like she had anywhere to be other than right there in the moment spending time with me.  That is a lesson I need to learn with my own kids.  I often get too busy and am too focused on crossing the items off on my to-do list to spend one-on-one quality time with my children.  Instead I need to take advantage of those special moments and make my children feel like the most loved and important people in the world.  Grandma was sure able to do that!  

Another favorite activity Grandma and I had was making cookies together.  All sorts of cookies, sometimes more than one kind in a day.  My grandma liked to bake and I loved watching her in the kitchen. She enjoyed making yummy treats and having others enjoy the food she made.  Part of my love for baking and cooking for others stems from her, I am sure of that.

I also liked doing chores with Grandma Amy.  I remember as a young child singing along to Patsy Cline tapes as we would clean her dining room and do house chores.  We would also get the outside chores done together and I thought it was so much fun to do these things that I didn't get to do in my everyday life.  We would collect chicken eggs, garden, and feed all the animals.  My grandma was a huge animal lover.  She always had some type of critter she was caring for.  When I was young, I remember the peacocks walking around, sometimes turkeys lurking about, a dog here and there, horses, cows and chickens.  Later in her life, Grandma had a dog named Joey who truly was her very best friend.

Grandma Amy, Joey and I - May 2008

But although she loved animals, she did not like raccoons or opossums that were up to no good and killing her chickens, eating the cat food or ruining her garden.  So...my short, sweet little Grandma Amy would take care of business.  I remember on more than one occasion Grandma getting up in the middle of the night because she could hear those pesky creatures out in the yard.  She would go get her shotgun which was tucked away in the old armoire in her bedroom and would handle the situation.  She didn't stop there though.  In the morning, she would get out the bathroom scale and weigh them just to see if she could break her record.   This, of course, was devastating for me but showed me how independent, strong willed, protective, and fierce my sweet Grandma really was.

Grandma Amy was infamous for wrapping Christmas presents in boxes other than what the item was to keep you guessing for as long as possible.  Grandma never had much money but her gifts were always thoughtful and meaningful.  I remember one Christmas, my grandma got everyone their favorite food item.  I believe mine was a box of Macaroni and Cheese, my Dad got his favorite - Cowboy Cookies, and my cousin Stephanie got a jar of olives.

I'll never forget when Paul and I moved to Arizona right out of college and I was so homesick.  I was struggling to find my new identity and figure out where I belonged so far from home.  My grandma Amy and I became pen pals at that time.  She would write to me and tell me stories about when she and my grandpa were stationed at different locations across the United States.  She let me know that she survived and I would too.  She let me know it was going to be OK and that she loved me and was keeping me in her thoughts and prayers.  These actions and her caring words meant so much to me and did help me get through that difficult transition.

I have so many more memories of my grandma I will never forget.  My grandma was sure she was going to win the Grand Prize from Publisher's Clearing House.  She would kill snakes with a shovel.  Grandma was a very hard worker.  She loved kids so much.  My grandma believed in Jesus.  Grandma had diabetes and when I was a child she would let me pick the spot where she would give her insulin injection. She was a good story teller and I enjoyed listening to true stories about her past and her life.  My grandma always took very good care of her home and her things.  Grandma needed to sit on pillows to see over the steering wheel in her car.  My grandma had a big heart and loved her family.

Myself, Tom, Celia, John and Grandma Amy - Branson, MO - 1996

When Grandma wasn't able to handle everything on the farm anymore, her children suggested she move to town.  My grandma moved to a trailer home which she lived in until she had to move to the nursing home when she could no longer take care of herself as well as she needed to.  She was battling dementia/Alzheimer's and unfortunately the disease was winning.  Her memories started to fade and slowly she wasn't able to remember who her family was, where she was, and didn't enjoy life as much as she used to. This was obviously very difficult for all of us that loved her.  We did our best to show her we still loved her and cared for her.  My family who lived close did a marvelous job of making sure the day to day tasks were being handled, that she always had familiar items to make her comfortable, that her room was decorated with love, and that she had a hand to hold on difficult days.

I'm grateful Grandma had such a big, supportive family who could provide all of this love and care.  Family is so important.  In good times and in bad.  My grandma knew that and I believe that is part of her legacy.  My grandma has shown me that we have to love and support our families, we have to show children that they are loved and valued, we should always work hard, we need to be kind to animals, that nothing shows we care more than lots of food, and that a hug goes a long, long way.

I love you Grandma and will miss you.  

Grandma and I - July 2004

Grandma Amy and Alexa - August 2012 - Grandma's 90th Birthday

Myself, Grandma and John - October 2013 - 1 week before Grandma's passing

Adventureland: "The Most Best Vacation Ever"

So now that it's Fall, I thought it was about time to post about some of our Summer Highlights.  If you ask Alexa, her favorite part of the Summer was going to Adventureland with her friend, Madysen.

Alexa says, Adventureland was the "Most Best Vacation Ever!!"

It was a quick trip but the girls had so much fun.  I think Madysen's Mom, Suzanne, and I realized we're not as young as we used to be.  The trip definitely wore us out!!

It's a three hour car ride from Lincoln to Des Moines and all in all the trip went well.  We, of course, heard "Are we there yet?" a lot but the three hours went quicker than I expected.  Alexa did get a touch of car sickness because she was watching the iPad too closely but that was solved by stopping for dinner at the Cheesecake Factory (yummy) and going on a little shopping spree at a really nice mall.

Once back in the car and on the interstate, Alexa declared she had an "Emergency" because she had to go potty "RIGHT NOW".  She kept saying it was an "EMERGENCY".  For some reason, Alexa's urgency made us all laugh hysterically.  I was literally crying while driving down the road because I thought this was so funny.  Luckily we did make it to the hotel in time and we all got a bit of sleep before our big day.

I think the "biggness" of the park overwhelmed Alexa at first but she warmed up to it quickly.

It was very hot and the lines were pretty long but the girls didn't know any different.  We started off the day on a giant Ferris Wheel.  She would never admit it, but it did scare Alexa at first.  It wasn't too long though before she was enjoying it all very much!  I can't say the same for Ms. Suzanne - who doesn't care for heights at all.

I can't tolerate spinny rides at all so luckily Suzanne volunteered to go on those rides with girls.  I was the photographer that got to stand in the shade!

I can handle the big roller coasters though so I had the privilege of taking Madysen on her very first roller coaster.  She was so excited and was really looking forward to it.  When we started up the hill she had her arms up high in the air.  She was so brave!  However, her mood changed pretty quickly when we coasted down the huge hill.  She told me she wanted it to stop right now and held on to me and the bar really tightly.  She didn't cry though and held it together remarkably well considering it was a pretty scary roller coaster - even for me!  She promptly told me when we got off the ride that she would never ride a big roller coaster again.  I wonder if that holds true?

Since it was getting to be mid-afternoon and we were really HOT standing in the long lines, we decided to venture over to the water park area.  Alexa was in Heaven!  Me, not so much.

What silly girls.  It was a wonderful trip that I'm sure Alexa will always remember.  She asks to go back at least once a week.  Maybe we'll try again next summer.  Thank you to Ms. Suzanne and Madysen for going with us!  It was great!

Halloween Ribbon Wreath

Ribbon Wreath's are all over Pinterest right now and I think they're super cute.  Most of the images direct you to an Etsy page and they are charging up to $100 for one. So...I thought I should try and make one myself (with a little help from Ms. Alexa, of course).

I've had a lot of nice comments about my ribbon wreath and some people have asked for directions on how to make their own so I thought I'd post a very quick tutorial.   I don't think there is any right or wrong way to do it and I just went with what was easiest.

Supplies:
Foam Wreath - whatever size you want
Ribbon in various widths and colors - LOTS OF IT!  I believe I used at least 12 different colors of ribbon.
Scissors
Straight pins (or hot glue if you're braver and less prone to burn yourself than me)
Embellishments, if desired.

Directions:
Something that you should do before you start is cover the wreath with either wide ribbon, tulle or spray paint so the white doesn't show through.  I didn't do this but wish I would've.

Next, start cutting strips of ribbon.  I decided I wanted varying lengths to give the wreath more dimension and texture.  This made it easy because I didn't do any measuring, I just cut where it looked good.  If you want your wreath to be more uniform and perfect, go with the same length of ribbon each time - probably around 4-5 inches.

Next, start making loops of ribbon and fastening them to the wreath with a straight pin.  Depending on the size/location of the ribbon you may need to use 2 pins per ribbon loop.  I chose to make my loops like this:

Then I stuck them to the wreath.  I did one type of ribbon at a time to try and place them uniformly around the wreath.  I also chose to change the direction of the ribbon loops and use no particular pattern because I liked that look better.  You could place them in the same direction in rows if you'd rather.

Then just fill in the entire top and sides of the wreath with ribbon.  This part took me several days to accomplish because I didn't have enough time in one sitting to do it all.

When the whole wreath is covered you can add embellishments if you want.  I chose a cute little spider that Alexa picked out at Michaels in the discount section.

You're done!

Parker Is Keeping Us On Our Toes

It's been awhile since I've posted a Parker update.  So I'll do my best to catch everyone up.  I want to start by posting this video because it was the highlight of our week!

Isn't he amazing?!?!  I'm so proud of him.  Pulling up to a stand is something Parker has worked hard on for awhile now and he's figured it out.  Sure, it may not be the most conventional way but nothing he does ever seems to be.

In other news, Parker's surgery at MAYO had to be rescheduled since he's been fighting some respiratory problems for a couple of months now.  While we really want to get this surgery out of the way, we also want to make sure he's at his best for the surgery.  So...the new surgery date is October 28th.  The hope is to be back home in time for Halloween because that's always a fun time for the kids.

Many tests were done in the last couple of weeks to help figure out what's going on with Parker. We found out he had an ear infection (the first one since his ear tubes were removed) so he was started on a new antibiotic for that.  He also had a chest x-ray which came back good except that it showed an enlarged heart.  He had a heart echo done last week and luckily it was normal.  Nothing concerning there.  Whew!

A trach aspirate was done (this is where they suction Parker's trach and send the sample to the lab to see if there's any bacteria present).  It showed the same bug that it always does but it's probably overgrowing and getting out of control - which it does sometimes.  So he was started on new antibiotics for that too.

I also have been working hard with the insurance company, Doctor's office and Medical supply company to get approved for more suction catheters each month.  Right now we have to reuse suction catheters and my theory is that this is part of the problem.  How are we supposed to get rid of the annoying bug that is causing these trach infections if we continue to reuse catheters and continuously reintroduce the bacteria that we just suctioned out?  I'm hopeful that if we get to use a different suction catheter each time that it will help.  In the meantime, some wonderful trach Mommies that I've met on Facebook have offered to send me some suction catheters they no longer need.  I love my on-line groups!!!

Additionally, blood work showed Parker is allergic to cow's milk.  This wasn't too surprising since Parker couldn't tolerate breast milk or other formulas as a baby.  That's why he was started on Neocate formula and was on it for a couple of years.  A few months ago, the GI Doctor and Dietitian thought it was time to challenge his system a bit and he was put on Peptamen Jr.   I loved the Peptamen Jr. because it helped with Parker's poo issues a lot (you may remember from previous posts that I was having to deal with blowouts daily).  Well, once he got used to the Peptamen Jr. the poo problems subsided a lot and I was enjoying not spending a great part of my week cleaning up messes. Well, the increased respiratory symptoms started about the time he was transitioned to the Peptamen and with the confirmation of cow's milk allergy we decided we needed to investigate further.

Earlier this week, we took him to an allergist at Children's in Omaha.  They did a scratch test using the Peptamen Jr. and it was confirmed he is sensitive (and likely allergic) to it.  Bummer.  So, now we are doing a trial on a different elemental formula called Elecare.   The Dietitian and allergist said the next step would be to transition him to a soy based formula.  Well, I'm not terribly excited about Parker being on the Elecare or soy-based formula for the rest of his life so I'm looking into starting a blended diet for him.  This is when you take "real" foods and pulverize them in a blender so much that you can then administer them by the feeding tube.  They have to be blended up really, really well so they don't clog the tube but it's nice because you can monitor exactly what your child gets, know they're getting excellent nutrition, and it's more "normal" for their systems - not so full of chemicals and ingredients you can't pronounce.

This is a big undertaking, a bit overwhelming and expensive but I believe it may be what is best for Parker. So...I'm going to give it my best and see what happens!  Hopefully my little guy will start gaining weight again too (it's been over 6 months since he's gained any weight).

In addition to all the  Doctor appointments we've been to lately (which has been A LOT), we've also increased Parker's therapy.  We now see physical therapy, occupational therapy and speech therapy once weekly on an outpatient basis.  This is in addition to the therapy providers from the school system.  Some weeks I feel like I spend more time at appointments than I do at home.  I guess I should be grateful because compared to when Parker was a baby we don't have nearly as many appointments.  However, it still seems like a lot.  No wonder Parker is always sick - he gets exposed to all sorts of new germs all the time.

I'm also working on changing Parker's pediatrician.  Our current pediatrician is very nice and I appreciate that she doesn't rush us when we're there but many mistakes have been made recently and I think I've lost the trust I had in her.  I will have to second guess all of her recommendations from here on out and that just really doesn't work for me.  Well, you'd think changing physicians is fairly straight forward but not when you have a medically complex child.  Other pediatricians don't exactly jump on the chance of getting involved and I've been turned down by one of the largest pediatric practices in town.  Thankfully, Parker's Pulmonologist has offered to personally call and refer Parker to some of the pediatricians that she knows in Lincoln.  I'm not exactly sure when this will all take place but I'm hoping soon.   Prayers in this area would be appreciated!!

Other than that, Parker is still a happy, determined little guy who likes to cuddle, sing songs, wrestle with his sister, swing, play ball, and throw all of his toys as far as he can.  His naughty side is starting to peak through lately as well.  He likes to pull his sisters hair and does test limits with Paul and I.  It's hard to get upset with him for these things because we are so happy he is hitting these developmental milestones.  However, we are trying to teach him the sign for "hurt" for when he pulls hair or bites and we are working at being consistent with our responses so he knows what is acceptable behavior and what isn't.  

Well that covers the updates from the past few weeks.  Thanks for reading and staying up to date on this journey of ours.  I'll try to post some Alexa updates really soon.