Tuesday, December 31, 2013

Photo Book from 2013

Every year since Alexa was a baby, I've made a photo book at Christmas time that highlights my favorite photos and memories from that year.  I give a copy of the book to the grandparents and I think after five books/years, they have come to expect it.  I suppose it's a family tradition at this point.

Anyway, they are really fun to look back through and see how much the kids have changed.  I thought I'd attempt to share these books with you all as well.  Click HERE and then hit "full screen".    

Hope you enjoy our year of pictures from 2013.

Happy New Year to you all!!

Monday, December 30, 2013

The Best Christmas Gift of 2013

This year the very best gift we ever could have received was watching Parker crawl for the first time.  He's never really been interested in crawling and gets around by scooting around on his back.  He's pretty efficient at the scooting so never had any real need to learn how to crawl.

However, for some reason he decided he would start crawling.  Which we, of course, think is pretty darn great! 

He's got his own technique as he does with everything but it works and it will get smoother with time I am sure.

Here is a video of the BEST CHRISTMAS GIFT of 2013!

Friday, November 1, 2013

Happy Halloween

This year Ariel and Spiderman made an appearance at our house

Ariel loved her dress but HATED her wig

Spiderman pretty much disliked his entire outfit but absolutely couldn't stand the mask

This picture pretty much sums up how my kids really felt about wearing their costumes

When I wasn't torturing my children by making them wear outfits they hated, we carved and painted pumpkins. This year Alexa got a little more adventurous with the pumpkin goo.  Although...she much preferred wearing gloves and didn't want to grab the pumpkin guts with her bare fingers.

I think they did a pretty great job!

We also made giant chocolate chip cookies and Alexa decorated them to look like funny pumpkins.

I didn't capture a picture of this, but I think my favorite part of Halloween was the trick-or-treating.  Alexa did a very good job of saying "Thank you" to everyone that gave her candy and Parker waved "hi" and "bye" to everyone we met.   It was pretty great! 

All in all it was a pretty good Halloween.  And I learned a very important lesson - DO NOT buy costumes with wigs or masks!

Monday, October 21, 2013

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. 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

Monday, October 7, 2013

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!

Sunday, October 6, 2013

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.

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.
Straight pins (or hot glue if you're braver and less prone to burn yourself than me)
Embellishments, if desired.

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!

Friday, October 4, 2013

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.

Thursday, September 5, 2013

What exactly is Vesicoureteral Reflux?

Several people have asked for more details on Parker's upcoming surgery to fix his Vesicoureteral Reflux.  I don't think I do a very good job of explaining it so I thought I'd attach the MAYO website with the details so those people can educate themselves if interested.  To see that, click here.  Parker's surgery date is scheduled for Monday, September 30th at MAYO Clinic in Rochester, Minnesota.  This date is going to be here before we know it.  I don't even know where August went?!?!?

Paul and I are opting for the less-invasive endoscopic surgery.  This is explained under the "treatments and drugs" tab.  Paul and I feel good with this option even though the success rates are lower.  If there's a chance we can "fix" this issue without major, open surgery and a huge recovery time then we want to try that first. This is also what Dr. Kramer at MAYO highly recommended in Parker's case.

We will repeat some testing three months following Parker's surgery to find out if it worked.  If so, then he will no longer have to be on his prophylactic antibiotic and will be good to go.  Let's hope and pray that is the case.

In the meantime, we are praying that Parker stays healthy and does not get another urinary tract infection.  If that happens, his surgery will have to be postponed.  Parker has been dealing with respiratory problems for about 6 weeks now.  We don't believe he's "ill" but something is definitely going on.  It may be a reactive airway problem (early asthma), irritation, allergies, or who knows what.  The unfortunate part of this is that he isn't tolerating his speaking valve or the trach cap which means he's not able to make many noises.  This has been a huge step back and I hope we can figure out what's going on so we can start making progress in this area again.  Our major prayer is that whatever this is doesn't take a turn and develop into something more serious - like pneumonia.

Our other prayer request is for Alexa.  We found out that siblings have a one in three chance of also having Vesicoureteral Reflux (VUR).  Parker's VUR is most likely due to his chromosomal deletion but there's no way of knowing if that is the case or if he would've had this anyway.  So, the MAYO Physician recommended we have Alexa tested as well.  She does have some of the symptoms (not all) so we have decided to go ahead and find out for sure.

Alexa goes in for a Voiding Cysto-Urethrogram tomorrow at Children's Hospital in Omaha.  Alexa has never had any major medical tests done and screams as though she was dying if she scrapes her knee.  So...needless to say, Paul and I are not looking forward to this testing.  We have tried to prepare her, are bribing her with treats if she does well and I have asked for a child life specialist to thoroughly explain the procedure to her once we get to the hospital tomorrow.  Hopefully, all will go well and my big girl will surprise me.  We also pray that they find no issues and Alexa gets a clean bill of health.

Thank you to all of you who ask questions, want to keep updated on what's going on with our little family and those of you that pray for us.  We are comforted so much by this and feel so blessed to have such a wonderful support system and network of wonderful people who care for us!  THANK YOU!!

Wednesday, August 14, 2013

Walkin' and Talkin'

Parker had a great day in therapy today!  He took several steps in a row without too much support and I caught it (or at least most of it) on video. 

He does get around wherever he wants to go in his gait trainer but that offers quite a bit of support and he doesn't usually take steps the correct way.  However, today he did wonderful and we are so proud.  GOOD JOB PARKER!!


Friday, August 9, 2013

Parker's First Big Road Trip and MAYO Clinic

A few weeks ago, Parker was admitted to Children's Hospital with his first Urinary Tract Infection and an Upper Respiratory Infection.  We knew about the UTI prior to the hospitalization and had just started a new antibiotic for it when he started having respiratory problems.  We wasted no time and drove to Omaha as we feel the care and knowledge base is better there.  Since we caught everything early, he was only in the hospital for two days before getting to return home.  He did get pretty sick in that couple of days though and his fever got up to 105 degrees which was scary!

While in the hospital, Parker's Urologist did a consult at our request.  We knew Parker was at risk for UTI's because of his bilateral Vesicoureteral Reflux.  This is when Parker's ureters don't function as a one-way valve like they should and instead allow the urine to go back up into the kidney's which causes Hydronephrosis (enlargement of the kidneys).   Although he has the reflux issues, he had never had a UTI before which his Doctor's always seemed very pleased about so we weren't expecting to get a recommendation for surgery after just one UTI.  However, that's exactly what the Urologist recommended.

Due to some pretty significant inconsistencies in the Urologist's recommendations from one day to the next, his surgery recommendations and his bedside manner, we did not feel comfortable scheduling Parker for surgery without getting more information.  We decided to get a second opinion and the next closest pediatric Urologist that participates with our insurance was at MAYO Clinic in Rochester, MN.  So...we made an appointment and got ready for the biggest adventure Parker had ever had.

Somehow or another, Paul managed to get everything we needed packed tightly into our minivan.  It's crazy how much we had to pack.  We really had no idea how long we would be gone because we didn't know if Parker would be getting surgery or not during our visit so we prepared for it all.  It really looked like we were moving!

We left on Sunday, August 4th at noon and arrived at our hotel in Rochester at 9:30pm that evening.  We came up with some ingenious ways to keep Parker occupied during this long day.  Since we don't have a built in DVD player and Parker likes to throw things that are set in his lap, we tied the iPAD up to the hand holds in the van at just the right distance for him to see his movies.  He thought it was pretty great.

We stopped quite a few times including twice to change poopy diapers.  One of these times required us to take an exit in the middle of nowhere so we ended up changing his diaper on the side of the road right next to a corn field.  Good times, I'm telling you. 

After unloading the car and getting all of Parker's equipment set up we finally all got to bed around 12:30p.  We could've slept for an entire day but we had to get up bright and early because our first appointment was at 9:00a the next morning.

We were truly amazed by the size of MAYO.  It was a beautiful, well-maintained campus with huge buildings and very friendly staff.

We went up to the 19th floor up the main MAYO building and took a picture.  How beautiful!

We did manage to get where we needed to go for Parker's first appointment on Monday morning.  We spent a great deal of time with the Doctor's nurse who did a very thorough history and assessment on Parker.  Then the Doctor came in.  He did a better job of explaining Parker's diagnosis than anyone else had.  He said he agreed that Parker did need surgery but told us he would recommend the less invasive option.  He said the success rate was 70% whereas the more invasive, open procedure was closer to 90% but putting Parker through an open procedure would be a lot for him to go through and a much longer recovery time so we should try for the less invasive procedure first.

We felt like he really considered the benefits and risks of each procedure while considering Parker as a whole person.  Parker is a complicated little guy with much going on in many different areas of his body so the less invasive option was better in his case - maybe not everyone's case.   We appreciated that the Doctor considered all of this and were comfortable with his recommendations. The Doctor also made changes to Parker's prophylaxis medication by discontinuing the 2 antibiotics he is currently on and recommending 1 different one instead. 

The Urologist had recommended surgery but agreed with us that getting input from Neurosurgery would be helpful first.  We have received two very different opinions regards Parker's spinal cord.  The local Omaha Doctor says Parker has a tethered cord and would recommend surgery to try and correct it.  Due to my Mommy-gut feelings I decided to send his scans to a well-known Neuro-surgeon at Boston Children's Hospital a couple years ago.  He had the opposite opinion and said Parker doesn't appear to have a tethered cord and would not recommend surgery unless he had clinical symptoms (which he doesn't).  So...we've held off on surgery but wanted another opinion to make sure the spinal cord issues weren't playing a role in Parker's kidney/urological issues. 

Luckily, we were able to get in to see both Neurology and Neuro-surgery during our visit at MAYO.  We did have to wait a couple of days but we were OK with that. We were impressed with both of theses Doctor's and were especially grateful for the amount of time the Neurologist spent with us. She went over the MRI images with us and provided us with detailed explanations and education that no Doctor has ever done before.  It was really helpful and much appreciated.  The Neurologist even took the time to send Parker's scans to their pediatric radiologist to get another opinion.  All three of those Doctors agreed that Parker does NOT have a tethered spinal cord and would not recommend surgery.  He does have a cyst in his spinal cord but since he doesn't display any clinical symptoms that would suggest this is causing any problems, they would not recommend any surgical measures at this time.  They do recommend yearly MRI images to keep an eye on things but no other measures are necessary.

This was a huge relief for us and made us feel good that we held our ground and didn't agree to surgery with the local Neurosurgeon.  Since the spinal cord issues should not be causing any of the urological concerns we are free to proceed with scheduling the surgery with the MAYO Urologist.  Now I'm just waiting to find out the date for that but it should be within the next month or two.

When we weren't at MAYO Clinic for Parker's appointments, we kept busy doing other things.  We did watch a fair amount of HGTV since we don't have cable at home.  This has inspired me to want to put up a backsplash in our kitchen among many other household projects that I can add to our really long to-do list.  But other than that, we also drove around Rochester and took in the sights a bit.  It was a beautiful town with amazing architecture and a rich history.  We did visit the Plummer House which was built by one of the first MAYO Physicians and although we didn't get to tour the inside we did enjoy walking around the grounds.


We also drove by the Mayowood Mansion.  It was pretty remarkable to see but we chose not to take a tour because it is not yet handicap accessible so we couldn't take Parker's fancy stroller and his equipment.  We did enjoy walking around Silver Lake which is close to MAYO.  It had the cutest little bridges with a beautiful walking trail and flowers everywhere.  It was pretty but my allergies really flared up.

In addition, we celebrated Parker's 3rd birthday during our trip.  It wasn't ideal to have his birthday in a hotel away from family but we made do.  He opened up gifts...

and then went "swimming" for the FIRST time.  Taking a child with a trach to the swimming pool is scary.  However, there was nobody using the kids area of the pool in the hotel so I convinced Paul we could manage this adventure safely.  We just kept his trach covered and his upper body out of the water at all times and he had such a wonderful time!!

He loved splashing and having Daddy help him "jump" in and out of the water.  He even took several steps without us prompting him to do so when his legs were in the water.  We just need to figure out a safe way to do water therapy with him and I think he would take off!

On our last evening in Rochester, we went to a very large handicap accessible park.  Parker really enjoyed his time there and played on a lot of the equipment.  

On the way home, things went fairly smoothly except that Parker had a pretty big blow-out towards the beginning of our trip which required his shorts be thrown away as neither Paul or I wanted to clean them out.  Other than that, things went pretty smoothly.  We did stop several times again but did make better time on the way home than we did going there.

All in all it was a successful trip and I think we have decided to start seeing both Urology and Neurosurgery at MAYO versus continuing with those specialists locally.  Seeing top-notch physicians with good bed side manner at a world-renowned facility gives a person great peace of mind and we feel more comfortable proceeding with them from here on out...even if that does mean more crazy road trips in the future.

Also, I want to say a special Thank You to my brother (John), my parents, Paul's parents, Paul's sister (Taryne), and Paul's aunt (Kathy) for watching Alexa this week.  She had a wonderful time with all of you and feels extra special to have so many people to love her when Mommy and Daddy are gone.  We are one blessed family!!!

Tuesday, July 30, 2013

A Good Dog

This evening, I said a very tearful good-bye to the best dog in the world.  Callie.  She's been a part of my life for 20 years!  You don't get to say that very often about a dog.  She had a good life full of people who loved her very, very much and I'm sure she knew that as my parents, my brother and I were with her as she took her final breaths.  We love you so much Callie and take comfort in knowing you are resting peacefully now!!

I did want to share the blog I wrote about Callie over a year ago. 

Friday, May 4th 2012:
19 years ago I fell in love.  It’s not the typical love story though.  I was 11 and I fell in love with this little black and orangish-brown puppy with white feet, floppy ears, a crooked tail and big eyes.   She looked like a mix between a dachshund, beagle, and pit bull.  She had a long body, was close to the ground and had short little stubby legs.  She was a little disproportioned it seemed.  Many thought she was rather ugly but not me.  I thought she was beyond adorable and I wanted to keep her forever. 

It was summer and I had been spending most of my time at the local county fair.  I usually did spend a great deal of time at the county fair when it was going on because my Dad was the County Extension Agent and he practically ran the thing.  I was showing my bunnies in the 4-H competitions and kept busy with other activities while I was there.  The carnival had been at the fair but had since packed up and left.  This little puppy had probably come to town with them but had been left behind. 

The little thing followed me as I walked home from the fair one day and I’m sure I didn’t put up too big of a fight to keep her from doing so.  She was obviously a bit malnourished as she was quite skinny and very hungry.  I gave her some food and she was instantly my best friend.  I introduced her to my Mother who was not thrilled.  She did not want a dog, especially an indoor dog.  I was told “NO” I could not keep her.  My parents said I could take care of her only until I found her a new home. Well, I did reluctantly try to do this but no one would agree to adopt her.  After a few days with her, there was no way my parents could refuse to let me keep her.  I was head over heels.  And that’s how Callie (because she resembled a Calico cat) joined our family. 

In my opinion, Callie has been the best dog ever.  She is small-ish in size but thinks she is big.  And she has a BIG personality to go along with it – especially when she was younger.  When we were kids, my brother would put on his rollerblades or jump on his skateboard and hold on to Callie’s leash and she would pull him around the neighborhood.  She loved adventures and would go on walks, runs, and try to catch birds or bunnies that came into our yard.  She was loyal and protected my brother and I no matter what - even if that meant going against a 100-pound dog that would come towards us when we were walking in the neighborhood.  She was a terrific snuggler and would always want to sleep in our beds.  She could do a few tricks like sit, roll over, and play dead but she was way too smart to agree to anything like “stay”. 

Callie is practically fearless in every way except when it comes to water.  She does not like swimming or getting wet which is a bit unfortunate because my parents live on a lake.   When my brother or I would get in the water, Callie would just stand on the dock and bark.  BARK, BARK, BARK.  She was scared for us – it’s like she thought we were going to drown and she was alerting everyone within hearing distance of our dangerous situation.   You’d think she would’ve gotten used to this since my parents have lived at the lake for years, but no.

With as afraid as she is of the water, you would never imagine that she would love boat rides as much as she does but they are one of her favorites.  When my Dad or brother starts the boat, Callie will take a running leap off the dock and fly through the air into the boat.  Occasionally, she misses and lands in the water which is funny for the rest of us but definitely not for her. 

It’s amazing how Callie will know when it is time to go for a walk.  Someone in our family can just casually mention it to someone else in my family and Callie understands.  Up until recently, she would start spinning in circles so fast and getting so excited that you would think she was going to have a heart attack.  It was hard to even get her leash on because she would go a million miles an hour.  At some point along the line, Callie discovered that if she wanted to go on a walk (even if we hadn’t discussed it or planned on it) she would just start getting excited and turning in circles.  Sure enough, most of the time it worked and she got to go on her walk.  She sure had us trained. 

When I moved out of the house after high school, Callie stayed at my parent’s house.  I would still go over to visit regularly because I was living and going to college in the same town.  We would go on walks, go to the park, or go on car rides with the window down so her tongue could fly in the wind and get slobber all over my car.  And it was completely worth it to see how happy all of this made her. 

When I got married and graduated college, Paul and I moved away to another state.  I was completely and utterly devastated to leave Callie so far away.  I was incredibly homesick and yes I did miss my family and friends but I also missed Callie – terribly.  I felt like I had abandoned her and I had an enormous amount of guilt and sadness.   I knew she was being well taken care of but it was just not the same.

A few years later, Paul and I moved back home.  It was great to be back home with my family and Callie.  But soon I was having kids of my own and my life got crazy.  I didn’t get to visit Callie as often and before I knew it she had gotten pretty old.  She has had several tumors removed, has had a stroke, her vision and hearing have gotten really poor and she isn’t able to control her bodily functions too well.  But even with all of this, Callie still remembers me and loves me like she did when I was 11 and she was a puppy.

19 years later Callie is still the best dog in the world.  When I pet her head and rub her ears, she still gives me that doggy-smile and more wet kisses than I can handle.  She still loves going on walks even if she can’t make it very far.  She’s still incredibly sweet and loves to cuddle.  I realize her days are numbered but I’m thankful that I’ve had such a faithful companion for so long. 

I recently took a picture of Alexa with Callie and it reminded me so much of a picture of Callie and my brother John when he was young. How often do your children get to grow up with the same pet as you did?  I consider myself pretty lucky and I will forever be a “dog person” because of Callie.  I love her to pieces, her bent tail and all. 

Alexa and Callie 2012

John and Callie 1993

Monday, July 29, 2013

My Crazy Monday

This is what Monday has looked like for me today: 

Get up and let the night nurse go at 7:00a

Go back to sleep for a little over an hour

Wake up to the smell of poo

Breathe a sigh of relief when I realize Parker is just REALLY gassy

Sit on the couch with Alexa for a bit and watch cartoons and check Facebook.

Pat myself on the back for getting Parker up early enough to get his tube feeding started in time.

Get Alexa's breakfast ready.

Suction Parker several times throughout the morning.

Pour myself a bowl of cereal and drink a glass of juice.

Get distracted with a phone call from the Dr's office when I'm 1/2 done with my cereal.  Cereal gets soggy.

Decide to take a super fast shower while Parker is getting his food and watching cartoons.

Get out of shower to the smell of poo.

Realize Parker is covered in poo.  

Stop his tube feeding and attempt to change his dirty diaper.

Elicit Alexa's help in holding Parker's hands (after I cleaned them off) so he wont' "grab" while I'm cleaning him up.

Parker bathes himself, me, and the carpet in pee while I'm cleaning him up.

Change Parker's clothes, my clothes, and clean the carpet.  

Do Parker's AM trach and g-button cares.  Give Parker his meds.

Restart Parker's tube feeding.

Clean out Parker's dirty clothes and start a load in the washer.

Talk to my Mom on the phone while getting dressed.

Send e-mails/talk to/leave messages for the Pulmonologist's office, the HHC company, Alexa's daycare and the pediatrician.  

Ask Paul to pick up some of Parker's medical records that we'll need for the trip to MAYO Clinic when he's on his lunch break.

Quickly do Alexa's hair and throw mine back because we are really late.

Leave the house and pick up my Dad so we can deliver Meals on Wheels. 

Pull the car over to suction Parker.

Run into all sorts of construction on the way to pick up the Meals to be delivered.

Get really wet when delivering meals on wheels because I forgot a rain jacket for myself.  I did remember one for the kids though.

Get out in the rain a couple more times to suction Parker.

Get the Meals delivered.

Get a message that the Pulmonologist ordered a new medication for Parker.

Stop at the drive through to get a chocolate chip cookie for My dad, myself, and Alexa

Drop off Dad at home

Talk to 2 different people at the HHC company about supplies needed for this month, insurance coverage, and how to coordinate supplies in Minnesota if we need something while out of state.

Get home.

Play phone tag with the pediatrician's office.

Write some e-mails.

Get a text from Parker's speech teacher that she's going to stop by in 30 minutes to pick up the loaner iPad.

Make Alexa lunch.

Get Parker's afternoon tube feeding started.

Leave a message for the Urologist's office.

Talk to the pediatrician's office.  Find out Parker's follow up UA was clear (YEA!!) and request scripts and orders for supplies.

Talk with the speech teacher when she stops by.

Read Alexa two books.

Suction Parker several more times throughout the afternoon.

Realize the house smells like poo again.

Parker has another blow-out.

Stop Parker's tube feeding and attempt to change his dirty diaper.  Request Alexa's help again because Parker is all over the place and I can't hold him down alone.

Parker pees all over himself again (this time getting it all over his face, his trach ties and his shirt), the floor, and me.

Give Parker a bath.  Which is SOOO not easy to do by yourself.

Alexa helps me get the supplies I need.  

Re-do Parker's cares.

Clean up the carpet...again.

Wash out Parker's clothes and start another load of laundry.

Tell Alexa a Million Thank You's for all of her help today.  She asks, "Mommy are you having a bad day."

Finally get Alexa down for a nap at 3:00.

Notice I'm getting shaky and realize I haven't eaten lunch or had anything to drink since breakfast.

Warm up leftovers.

Try to convince Parker to take a nap with no luck.

Realize this day has been crazy and decide to blog about it because someone else has to get a kick out of it.'s only 4:00pm and Alexa still needs to take a bath, eat dinner and get to gymnastics class by 6:00p.  

Looking over all of that I can say a couple of things with absolute certainty.  1) I hate poo!  2) I'm the luckiest mother in the world to have such an understanding and helpful 4 year old that knows her Mommy's having a bad day and will do whatever she can do make it better even when her Mommy is on the brink of losing it. 3) I spend a lot of time on the phone and corresponding by e-mail with Doctor's offices, health professionals, and teachers.  4) This is why when I go to work I feel like I'm having a vacation day.  5) I don't know if I could survive without Parker's smile.  He's had a rough day too but still has a huge smile on his face even through the blowouts, getting wet in the rain, being held down by his sister, the bath that Mommy does not do as good as Daddy, and the fact that he's still not feeling too great because he's got another bug (that's not contagious this time). 

So that's been by day so far.  And guess what, I haven't gotten a single item on my to-do list done today yet and we leave for MAYO on Sunday.  Let's hope the rest of the week isn't quite as crazy!!

Saturday, July 13, 2013

Dream Night

We were invited to the annual Dream Night at Omaha's Henry Doorly Zoo a few weeks ago.  We didn't really know what to expect other than it was for families with children with disabilities and terminal illnesses.  We decided to go and we were so glad we did.  It was a beautiful evening both because the weather couldn't have been better and because the zoo went out of their way to make sure all the families in attendance had a wonderful experience!  

The event took place after regular zoo hours and since the zoo is so big and there were not too many families in attendance we felt like we had the whole place to ourselves.  If you've ever been to the Omaha zoo you know how unusual this is.  When we arrived, the zoo offered us supper free of charge.  We then got to go on a few behind the scenes tours which was extra special and exciting for the kids (and us).  

We got very up close and personal to the giraffes.  

We rode the train all around the zoo and I got a big hug the whole time.  Parker wasn't sure about the train whistle and he held on TIGHT!

Alexa loved it though and wanted a picture with her and the train.

We also got to go on a behind the scenes tour of the aquarium.  This was especially neat and very interesting to see everything from this perspective.  Looking down into the water was pretty fascinating.  

We also went the regular way through the aquarium but seeing everything without all the crowds was really nice and Parker ate it up!  The aquarium was by far his favorite!

They had many other activities for us to do while we were there and it was so much fun for all of us.  We really did feel special and the experience did fit the the theme of "Dream Night".  Thank you to the Omaha Henry Doorly Zoo!!