Huntington’s Disease

To say that the past year and a half has been tough would be an understatement.  Our entire family has struggled to come to terms with what the future means with a Huntington’s Disease (HD) diagnosis.  In just over a year our family of 5 has gone from a normal, happy life to one where we need to think about things people in their 30s and 40s shouldn’t have to think about…like social security, disability and long term care policies.  We thought we’d watch our babies grow up together but that’s no longer a reality.

For those of you who don’t know about HD, or have never even heard about it, this disease causes the progressive breakdown of nerve cells in the brain.  It deteriorates a person’s physical and mental abilities and has no cure.  That’s right NO CURE!  It has been described as having ALS, Alzheimer’s, and Parkinson’s Disease all at the same time.  Patients struggle with personality changes, mood swings, depression, forgetfulness, and impaired judgement.  As things progress they will develop an unsteady gait, involuntary movements (known as chorea), difficulty swallowing, and slurred speech.  Each child of an HD positive parent has a 50/50 chance of inheriting the disease, but if that child doesn’t inherit the gene they will never develop the disease and cannot pass it on to their children. This means that each of our 3 kids have a 50% chance of the same fate.

When Mike first approached me to say he was having symptoms I was not expecting it at all.  I always knew that it was a possibility and deep down I felt like it was going to happen at some point but I think you push things like that out of your mind and even though looking back there were signs, they were overlooked.  I had no idea how much this disease would impact us and really had no idea what the whole disease was about.  I had watched my father-in-law progress through this disease but by the time I met him he talked only a little and could still eat and walk.  I never could have imagined the cognitive deterioration and psychological changes that would be encountered in the early stages of this disease.  In hindsight, the symptoms started many years before his diagnosis.

In the past year I have watched my able-bodied husband go from working full-time to not being able to work or drive at all anymore.  I had no idea it would progress this quickly. His cognitive skills have declined to the point that he can’t learn a new job that isn’t as taxing on his body as welding, which is what he did for the past 20+ years.  His brain gets stuck on a subject to the point he can’t let it go and it becomes an obsession.  There has been lying, deceit, and battles with myself and my children that never would have happened in the past.  The battles with our kids are generally over trivial things and his patience level is low when dealing with them.  I mean, I will be the first to admit that I don’t have the highest patience level but he used to be the patient one.  It is difficult for our kids to watch the decline of their dad and to understand why he behaves the way he does at times.  To the outsider he seems like the same old Mike, but living with him every day it is easy to see the changes and difficulties he encounters.

The cognitive decline has been very difficult to deal with and to watch.  Mike struggles with simple instructions, asks you to repeat things frequently, and constantly forgets things.  He can ask the same question 3 times at supper and have no idea that it’s already been discussed.  He used to make fun of me for making so many lists and he’d tell people that I had ‘lists for my lists’ (which is quite true) but he is now realizing the benefits of those lists and makes them frequently to remind himself to do things.  We saw an Occupational Therapist (OT) to help him with strategies to make things easier for him at work, etc and I felt so bad for him as the OT in training was going over all the tips and tricks he could use she came to the end and asked him which of those things he could use to help him…but she didn’t realize the irony in asking the guy with a short-term memory issue to recall what had been discussed and relay information from the discussion.

Mike’s physical decline does not seem to be progressing as quickly although he definitely struggles with the chorea because it sometimes keeps him up at night and makes it difficult to get to sleep.  His struggle with sleep has affected both of us and I have chosen to move my bed to the couch because it was becoming a vicious cycle.  Him waking up and struggling to get comfortable which woke me up and then he’d be afraid that he was keeping me up so he’d get up and go watch TV in a different room.  This meant that neither of us were getting enough sleep so it was just the simple solution.

This post is not meant to evoke pity but rather to inform the world of this awful disease and let others know that they are not alone in this battle.  It is not a journey that can be traveled alone and there are many wonderful people who have been there for us along the way already and I know many will continue to walk this path with us until the end.  I hope that at least one person can read this and find comfort that it’s not just you here battling this disease and feel a little less alone because it is a lonely battle but it doesn’t have to stay that way.


Disney Cruise [part 3]

Day 3 was going to be a super exciting day with our first port in Grand Cayman.  However it turned out we had hit a cold front, which we knew from the rough seas through the night, and we would be porting on the opposite side of the island than we were supposed to port.  We also had a snorkel excursion scheduled but due to the weather that was cancelled as well.  Disney made arrangements for transportation to the main part of the island once we got on shore from the ferry.  We rode a bus to the main shopping area of the island and did a little exploring.  We hit several shops and hit Margaritaville for a VERY expensive lunch that wasn’t even very good.  It was exciting to be in our very first foreign country and look around and show our kids a different culture…even though it is a very big tourist area so doesn’t seem ‘foreign’.

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Pink & Gold Princess – First Birthday Party

Since my last post we have a beautiful baby girl named Charlotte and we celebrated her first birthday today!  The party was a smashing success!  It is very different getting to throw a girl birthday party and it was so much fun to plan!


I used this tutorial to make the banner with her name.  No fancy cricket machine needed.  The letters are stickers so the only thing that needed cutting was the pink banners which I had some help with…thanks Trudy!


This chalkboard was quite a bit of work but it was SO much fun to make.  It’s a great way to remember all the things my baby girl can do at this age.  I used this tutorial to make it.  Instead of tracing everything on the window like she did i just pressed gently and made indents on the board.  Once I had traced the full word I used the paint markers to trace the word.  I also used my printer and printed out all the words I put on the board because I don’t have that neat of handwriting!

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I made these pom poms based on this tutorial.  I would highly recommend using the amount of tissue paper suggested in the tutorial because I didn’t on all of them and they didn’t turn out as full as it would have if I’d followed the instructions.  You can see in the picture that the gold pom on the left is more full than the others.


I used this Wilton candy mold to make the crowns for the cupcakes and then dusted them with pearl dust.  They ended up being so cute!

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Life Changes – Vasectomy Reversal

A year ago today my husband had a procedure that has changed our life. We made a trip to St. Louis to have a vasectomy reversal done with Dr. Sommers who specializes in reversals and has had it done himself.

We started talking about it a couple months before that. It had been 2 years since we made the decision to have the vasectomy. It was a decision we made together but I don’t know if my heart was ever fully in it. I think I was trying to convince myself that I was okay with the two healthy boys I had and I was happy but I never lost that feeling of wanting another. I loved being pregnant and even with all we went through with our heart baby I was still willing to take the chance to have another.

I unfortunately had never let my true feelings be known to my husband. He had no idea I felt that way but watching him with my nephew I knew he enjoyed kids as much as I did. The conversation started with a simple comment made by me that I would have another but we couldn’t. He approached me about the comment and it went from there.

At first I got really discouraged because as I called around to clinics in Minnesota I found that most if them charged extreme amounts (like $10,000 and up) and do the procedure with anesthesia and an overnight stay in the hospital. So I started doing more research and found a forum that was a godsend! It was just for people like myself who were looking into a reversal and has been a wealth if information and support for me. I found a couple doctors that perform the reversal with a less invasive method and much cheaper. One dr in Oklahoma does it as a mission and only charges $1700. The doctor we chose charged $3000 and was closer to us. He had a great success rate and we loved the experience.

The procedure was quick and Mike had very little pain. His recovery went very smoothly and quick. At that time we didn’t tell anyone (which was difficult with having to make arrangements for two other kids) in case the procedure didn’t work. I didn’t want the constant ‘how’s it going?’ question.

Much to our surprise we got pregnant two weeks after the procedure! It was so much fun to see the looks on the faces of our parents and family when they found out. There was much confusion at first. Unfortunately that pregnancy ended in a miscarriage at 9 weeks which was devastating along with a chemical pregnancy the following month. Then in November we found out we were pregnant again! It is almost scary how fertile we are even after a reversal.

We are currently 37 weeks pregnant with our 3rd child and we couldn’t be more excited. We have two big brothers who will be great helpers and are excited to have this new member join the family. I can’t wait to see where the future takes us and I am so happy we made this decision to change our lives. Our house is so filled with love and we are truly blessed to have what we have.

My advice to those considering a vasectomy is to make sure it’s exactly what you want. Many who have reversals are not as lucky as us and it doesn’t work so it’s not a guarantee.

TUTORIAL: Duck Dynasty Cookies

Anyone who knows us knows how big of fans we are of Duck Dynasty on A & E. Especially my boys who think it is hilarious. So both of them requested Duck Dynasty as the theme for their birthday parties. Now while I didn’t get time to do all the fancy decor as in past years I did manage to make some pretty adorable cookies for birthday treats. So here’s how I did them.

I used a Frankenstein head cutout I got from a Wilton Halloween set a few years ago. I turned it upside down because to me it looked like a face with ears and a beard.  You can see my original plan sketch.

Duck Dynasty Cookie
Duck Dynasty Cookie

I used my Sugar Cookie recipe to bake the cookies. I started by doing the face part because it will need to be behind the beard.


After I filled in the face and let it dry I started outlining the beard.

Duck Dynasty Cookie

Once it was outlined I filled it in.  Then I waited til it had dried a bit and scratched it vertically with a butter knife.  I wanted the beard to have some texture and this was the best way I could think of.  It worked out well I think.


Because I was doing a representation of Phil Robertson and he wears a camo headband I next outlined the headband.  When I filled in the headband I used two colors of green and a tan.  I put spots of each of them within the outline and then swirled them with a toothpick to make them more camo-like.  I forgot to take a picture of that but you can see it in the final pictures.


The final step was to add a face.  My boys thought that my orignal sketch looked like the eyes were closed so I decided on dots instead.  The nose was tricky and I didn’t get them to all be uniform but I am happy happy happy with how they turned out.

Duck Dynasty Cookie

You can see the noses were all a bit different but it works!


Hopefully you will be inspired to create your own Duck Dynasty cookie.

RECIPE – Apple Crisp Cheesecake

I know it’s been forever again since I blogged and I promise to finish our Disney Cruise story but I had to share this recipe because I promised it last year to a great friend of mine and I never got to it!  So this one is for you Jen!

My basic cheesecake recipe can be found here.  The difference is going to be a different crust and adding some apples and cinnamon.


1 stick butter melted

1 c. Oatmeal

1 c. Sugar

1 c. Flour


Basic cheesecake batter recipe

2 c. Apples

1 tsp Cinnamon


6 T melted butter

3/4 c. oatmeal

3/4 c. flour

3/4 c. sugar

Preheat oven to 350 degrees.  Pat crust mixture into a 9″ springform pan.  Bake crust for 15 minutes or until the edges start to turn golden brown.  It is important to bake this crust enough because otherwise it will taste raw after baking is complete.  While the crust is baking make the filling.  Once the crust has cooled a bit you will begin pouring filling over crust.  I layer the apples (which I slice with my peeler corer slicer from Pampered Chef) and filling alternately.  Then top the cheesecake with the topping mixture.  Bake for 35-60 minutes or until the middle doesn’t jiggle.  I realize this is going to be tough to figure out because of the topping but just do your best.  I usually bake this one a little longer than I think because you don’t want it to be mush in the middle and the apples in the filling cause it need a longer baking time.

I also generally use the broiler to brown the topping because I like it to look golden brown.  ENJOY!

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Disney Cruise [part 2]

Monday began our journey to the port and getting on board the ship!  We weren’t scheduled to arrive til later in the morning so we took our time (the boys played some old school Nintendo) getting ready but finally embarked on the hour drive to the port.  When we arrived we unpacked the car, said our goodbyes, and were off on our adventure.  We got our bags all checked in and were finally called to get on the ship!  When you step on the ship they have a welcome party going on and announce each families name as they enter.  It makes you feel very welcome.  Once you are on the ship you are free to roam around and check everything out except your stateroom.  The rooms are getting cleaned and ready for guests while everyone roams the ship because they have just gotten everyone off from the previous cruise.  It is amazing to me how fast they can turn the ship over after the guests get off.

So while we waited for our room to be ready we checked out a couple floors of the ship and eventually found some food before sitting by the pool for a while.  At about 3 pm they begin the Bon Voyage Party by the pool.  All the guests gather and they hand out streamers and sell drinks (pricey buggers).  We watched a couple other ships embark on their journey as well.  Boy those ships are HUGE!  They feel big when you are ON the ship but watching the others they look even bigger.


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Before we knew it it was time for dinner at one of the three restaurants that the guests are assigned to each day.  The first night we got to eat at Parrot Cay.  We go to meet our fun and entertaining servers Arnel & Gede.  The food was so good!  They had an island themed menu this night.  The menus are all 3 courses and you can select whatever you like.  I chose the Beef Tenderloin and so did Mike.  I had the creme brulee cheesecake for dessert…SO fabulous.  They bring out the food and you feel like you are never going to be full but by the end of the meal you are sure to be stuffed!  The kids had their own menu but could also order from the adult menu if they chose.  I was hoping that the boys would go outside of their box a bit but Avery ate pizza…for EVERY meal on the ship (except breakfast).  Blake did try a couple new things.

The first night of dinner nearly ended badly with a kid throwing up.  I think it was a combo of the ship moving and all the food he ate but Avery nearly got sick.  I was going to be so mortified if he had done it in the restaurant but he held it down!  After dinner it was time to retreat to the cabin and retire for the night.  We had the 8:15 seating every night so by the time we were done with dinner we were all exhausted.  We would watch a couple minutes of TV and then turn in.  Here is our family photo from the first night before dinner…the boys were all SO thrilled that I made them dress up…NOT!


Day two was a day at sea on our way to our first port, Grand Cayman.  We had great hopes of spending days by the pool and getting lots of sun.  That did not happen much on our cruise.  We ran into a cool front at sea and it created rough waters and cool weather.  We did take the kids to the pool after breakfast on the first day but as you can see it wasn’t all that warm.  But that didn’t stop us from partaking in the free ice cream that day!


The cruise constantly has something going on for everyone.  Adult only activities, kids only activities and for families as well.  While we were by the pool there was an ice sculptor creating a masterpiece.  We stopped and watched.  He wouldn’t say what he was making until he was done but it turned out to be an eagle.  Blake LOVES eagles so it was right up his alley.


After the pool we went to play BINGO and try to win some money.  We didn’t win anything but it was fun to go and play.  It was something that we could all enjoy.  After that we dropped the kids off for some time in the Oceaneers Club while mom and dad went to get a couples massage.  Oh it was so relaxing!  Mike had never had one before so he wasn’t sure and I don’t think he enjoyed it much but I sure did.  I wish I could afford one of those once a month!

We had just enough time to get ourselves changed and ready for dinner after our massages.  We had time for a quick photo opp with Goofy before going into the restaurant.  Triton’s was the restaurant for the night.  They had a French cuisine menu.  I tried the sea bass which was so-so.  Don’t recall what I ordered for dessert but Avery’s was fabulous!  He ordered it every night after this.

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It was a fabulous way to end Day 2 of our cruise and we were in great anticipation of our third day as we were to stop at port in the morning!

Year End Teacher Gifts

I have struggled this year for gifts for teachers because Avery has a male teacher. I found about idea on Pinterest (of course!). It was a basket for a Father’s Day gift full of BBQ items. I knew I’d hit the nail on the head!! So I set out to find what I could to fill the basket. I decided to do the same for Blake’s teacher and do it in more girly colors.

Here’s what was in them:

Plastic bowl – $1 at Walmart
Oven mitt – $1 at Target
Kabob holder – $3 at Target
Tongs – $1 at Walmart
Lighter stick – $1 at Target
Skewers – $1.99 at Target
BBQ sauce – sale price of $.88
Sweet & Spicy Rub for meat – homemade (don’t know what it cost but not much)

Then I just added some colored tissue paper. Looks pretty and is useful. I hate giving gifts that they can never use.

Disney Cruise [part 1]

After planning and saving for what seemed like forever we embarked on our very first major family vacation! We were all so excited but this momma was a bit stressed with all the preparations! Packing for 3 people is a LOT of work! We managed to pack all 4 of us into 1 large checked bag and 4 carry ons! That in itself is a miracle!!

We picked a 5-day cruise that ported out of Miami so that we could see my BFF Nika too! We got done with our end of the year hockey party for Avery and embarked on our first leg of the trip to Eagan where our awesome friends live and they had agreed to transport us to the airport. When we jumped in the car to go to the airport we first had a minor panic attack when Blake announced that he couldn’t find his iPod! We searched the car over and determined that he must have dropped it at the gas station but we had no time to go back. So we were off!!

When we arrived at the airport we learned that our plane was delayed so we had extra time to kill but once it was time to get on the excitement was about to begin! This was the boys’ first ride on an airplane and they were excited. We each sat with one kid and Avery say by me and was FULL of questions. Everything intrigued him but he was very antsy to get to Florida.



When we finally arrived…after some tears from ears popping…we got to see my BFF and feel the warm, humid air of Miami! We had dinner and got ourselves to bed after a long day!

The next day, Sunday, we headed to Fort Lauderdale beach. It was windy but warm especially for our Minnesota butts! So we spent the day with our pasty white skin trying to soak up as many rays as we could without getting fried! We slathered on the sunscreen and tried to keep the sand out of a our food…especially the pizza Nika and her friend Wayne picked up for us. Best pizza I’ve had in a long time!!  Here’s some of my favorite pictures from the day:


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DIY – Necklace Holder

When I saw this on Pinterest I knew I had to have one for my bedroom.  BUT if you’ve read my blog at all you will know that I am cheap and the price tag on that adorable necklace holder was a little too steep and it looked easy enough to make…so I did!

Here’s what you need:

2×4 board – painted the color of your choice – length depends on how many knobs you want

5 knobs (that’s how many I chose but you could do more)

5 washers (equal to the number of knobs)

Drill with two size bits

Picture hanging brackets


First I had my dad help me drill some holes in the board as they needed to be counter-synced (I had no clue what that meant but it’s easy).  First drill holes a little smaller than the bolts on the knobs.  Then on the back side use a larger bit (the size of the washers) and drill part way into the board…far enough so that the bolt comes through.  After the holes were all drilled I sanded the board down and spray painted it.  Make sure to do several even coats rather than try to get it all coated at once.

Here’s what the front of the board looks like.

Here is the back of the board.  Notice the holes on the back are larger.


Then I added the picture hanging brackets.  There are other kinds but I had these already so I used them.


Then I just screwed in the knobs.  I purchased these at Hobby Lobby.  They have an amazing selection of these decorative knobs.  Finished product looks really good!

DSC_4659Good luck making your own!  Think of the colors you could use…