Friday, April 26, 2013

Our Wild Safari

Today we visited Wildlife Safari Park with Paul's sister, Taryne, and her kids. 

 We only live about 30 minutes from here but had never been.  It was a lot of fun and really allowed you to get very close to the animals.  Most of the adventure requires you to drive around and look at the animals from the safety of your car. 

 Parker may not have seen most of the animals but I do believe he got a good look at the buffalo since they are so big and we got so close.  He also enjoyed driving around slowly with the wind blowing in his face.

 We saw several different animals and birds as well.  The cranes below are pretty famous in Nebraska but I don't think I've ever seen one up close before and they are bigger than I thought they would be.

The other part of the adventure allows you to get out of your car.  There was a small petting zoo area with goats and chickens.  Alexa loved this, of course.  One of the goats tried eating Alexa's tutu which was pretty funny.

Then we went on a walking trail that allowed for several photo opportunities.

And before we knew it, the walking trail turned into a pretty good hike.  I'm sure glad Paul was along to maneuver the stroller up the inclines.

We also saw some beautiful scenery.  In a few weeks when everything greens up a bit more, it will be even prettier!

By the end of the hike, Parker was out.  I guess that's how we know it was a successful trip.

It was a wonderful day and I'm so glad Spring has finally decided to show up.  We can't wait for more beautiful days so we can enjoy the "wild" outdoors as a family!

Wednesday, April 17, 2013

Why I love the Internet and Facebook

Parker went in for several surgical procedures yesterday at Children's Hospital.  All of them were scheduled and routine but are still no-fun and a bit scary.  This was his 7th time under general anesthesia.  Every time I get anxious but it does get somewhat easier the more we have to do it.  I suppose some of this is just knowing what to expect and some of it is feeling confident in the Doctors and staff involved.  I believe a lot of it also has to do with the amount of love and support our family has and the amount of prayers that go up for Parker.  

So many people in our life ask to keep updated on Parker so I put a post on Facebook yesterday letting everyone know that Parker was going in for the various procedures.  It was so wonderful and comforting to see the "likes" and "comments" and knowing how many people were thinking and praying for Parker and our family.  We are truly blessed!!

Following his procedures I put up a post with updates on how his day was and again we were flooded with love.  This is why I appreciate technology and the modern age so much.  I can absolutely say that if we were going through this exact same experience many years ago that it would've been much more difficult.  We can instantly update our friends and family about what is going on and receive instant feedback and support.  We have loads of information at our fingertips and have so many resources available to us.

I also love that the internet and Facebook has allowed me to connect with so many families around the world that are going through very similar situations as us.  There may be no one with the exact same deletion/diagnosis as Parker but there are people with similar diagnosis and similar situations.  It's been so valuable to me to be able to connect with these other parents and share our stories, struggles, joys, and information.

The Chromosome 6 group that I am a part of on Facebook also alerted me to a new research study that is being conducted out of the Netherlands that is dealing specifically with deletions on Chromosome 6.  This study probably would not have happened if our Facebook group did not exist.  It allowed the researchers to see that there are in fact many people out there in the world that have a 6q deletion and as our group can attest, those numbers are growing everyday.  The groups size and the active involvement of the members have shown the researchers that it is worth their time to spend the effort finding out more about these deletions.  

The researchers will probably never meet the subjects in their research face to face but through technology we can communicate and pass the needed information along.  How wonderful is it that a research study can be done with people from all around the world and no one has to leave the comfort of their own home to participate?     This study won't change anything for Parker but it will hopefully gather more information that will be highly valuable to others in the future.  I'm immensely grateful for internet-based support groups like this and active parents who seek out all the information they can get.  What an exciting time!!  

And as an added note, I'm also grateful that information can be sent electronically because I can't imagine how much it would cost to send all of Parker's medical records to the Netherlands by mail!!
These are just the medical records I have printed off, the rest are on disk!  

Sunday, April 14, 2013

15 Things You Should Know When You Decide To Be A Stay At Home Mom With Young Children

I feel very fortunate to get to stay at home with my kids.  Really, I do. But starting out, I also felt a little unprepared and this journey isn't exactly what I thought it would be.  I imagined that a being a SAHM (Stay At Home Mom) would be a "nice break" and much less stressful than working outside the home.  I thought it meant lots of cuddle time, having happy children that adored me, getting lots of hugs, having more time to get everything done and having a better run household.  In all actuality, it's a lot of hard work, not at all glamorous, there's not nearly enough time in the day to get everything done and your children don't always like you.  Here is what I wish I was told before deciding to be a Stay At Home Mom with young children.  

1) Yoga pants and T-shirts become your entire wardrobe.  And...those clothes usually have spit up spots, other bodily fluids or whatever you made for lunch stuck on them.  It's a really good day if your hair and makeup get done. 

2) Sometimes you don't get to take a shower until the kids are down for a nap or until after your husband gets home.  Sometimes you don't get a shower until the next day. 

3) Occasionally you serve your family oatmeal or cold cereal for dinner because you didn't have the time or energy to come up with something better. 

4) You talk about "pee-pee" and "poo-poo" so much that it becomes a normal part of your vocabulary.  So much so, you even talk like this when there are no kids around.

5) You will come up with errands that need to be run, phone calls that need to be made or schedule a play date for your child just so you can get some much needed adult interaction.  Heck, this might mean you talk to the sacker at the grocery store or the cat lady down the street.  As long as they are over 5 feet tall and can make small talk you are good!

6) You are EXHAUSTED all the time!  You feel like you will never be able to catch up on sleep. 

7) You start out with grand ideas of no TV watching, eating only healthy foods and having perfectly well behaved children that listen the first time you ask them to do something. You learn quickly that sometimes it's much more realistic to turn cartoons on first thing in the morning, serve your child Lucky Charms for breakfast and Mac and Cheese for lunch and then bribe them with M&M's to use the potty or if they are good at the grocery store.  This doesn't make you a bad Mom.  It just means you are human.  

8) Your children may be small, but they are mighty.  They will take over control of the house if you let them.

9) It's not easy!  In fact it's the hardest job you will ever have.  Just when you master one thing, a harder thing comes along . And just when you find what works for one kid, you realize your other kid doesn't follow the same rules. 

10) Sometimes you feel shut out from the real world.  You feel alone and isolated.  Your Mommy friends that work just don't understand where you are coming from and your friends that don't have kids think you've got it made.  You are sick of being asked, "So what exactly do you do all day?"

11) You feel like you are messing up your kids for life on a regular basis.  Sometimes you feel like the worst mother in the world.  Occasionally you lose your cool.  Fortunately, you also find out that your children have a remarkable ability to forgive and this makes you very grateful.

12) A Mother's work is never done...I mean NEVER.  And being a Stay At Home Mom is even worse because you and the kids are home all day to make the house a mess, go through more laundry, and use more dishes.  You often feel like a maid...that doesn't get paid...and is not appreciated...and whose job is never done. 

13) Your days are often very monotonous.  You do dishes, change diapers, pick up toys, change diapers, do laundry, change diapers, kiss boo-boos, change diapers, sing kids' songs, change diapers, play with dolls or mega blocks, change diapers, clean, change diapers, make food, and did I mention change diapers?

14) You really don't get any time alone.  Like ever.  You get interrupted when using the bathroom, you don't get to shower in peace, you can't talk on the phone without hearing, "MOMMY" or having your leg tugged on, and you don't get to take breaks.

15) You feel guilty because you aren't the Super Mom that you thought you'd be when you decided to stay at home.  Your house doesn't look perfect, your kids aren't always on their best behavior, you don't always look that great, you don't have a hot dinner waiting on the table when your husband gets home from work and sometimes you just want to go back to work. 

But you know what, despite it all you wouldn't change a thing.  You do feel lucky that you get to mold and shape your children and be there with them while they are little.  You may feel like you are going crazy most days but you adapt and find survival strategies that help you through. Sometimes you have entire hours, entire afternoons or even entire days that go smoothly and wonderfully and you realize you wouldn't change this opportunity for the world.  You learn that it's OK not to be "Super Mom".  You figure out that "Super Mom" never really existed in the first place.  We all just do the best we can and our children will love us even if we do mess up once in awhile. 

Monday, April 8, 2013

Our Zoo Adventure

Last week, we took the kids to the Omaha Henry Doorly Zoo.  This was probably our biggest family adventure yet.  Previously, we would not have taken Parker because we would have been too afraid of the crowds of people and the possibility of picking up unwanted germs.  This was still on our minds, but we were hoping that by going on a weekday and staying away from people we'd be safe.  We also didn't want to miss out on the beautiful weather that we had and to take advantage of it before it gets too hot for Parker too handle.  

Both kids had a wonderful time!  This was one of the first zoo trips we have taken that Alexa was actually interested in looking at the animals and Parker was so excited to see new and different things.  I don't think he could really see any of the animals but being in a new environment with various lights and colors made him so happy.  He kept clapping and smiling from ear to ear.  One of his favorites was looking at/listening to the waterfalls in the Rainforest.    

The next favorite spot was the aquarium.  We did go through it a bit quicker because it was more crowded but Parker really enjoyed all the bright colors.  I think the aquarium is my favorite as well!

Alexa enjoyed looking at the sea creatures, especially when they would get close or swim over her in the tunnel.  We were all amazed at how big this turtle was.

Alexa did a fabulous job.  I was very proud of her.  I enjoyed seeing her and her Daddy look at the animals together and have some bonding time.

We decided to give the IMAX a try.   Going to a movie isn't normally an option because it is a public place with lots of people.  However, the IMAX at the zoo had hardly any traffic and we were able to sit in the very top row with easy access out in case we needed to suction.  I was thinking Parker would either love it or hate it.  He did let me put the 3-D glasses on and I was so curious to see what he was going to do once the movie started.  Well, as soon as the lights went out and the movie started, Parker feel fast asleep.  He was exhausted from our long day and he slept through the whole thing.  Silly little guy.  Oh well, I guess this way he didn't require any suctioning and the rest of us got to enjoy the whole show. 

It does take quite a bit of preparation and requires us to bring a lot of "stuff" when we do things like this but it was all worth it.  The entire day went fairly smooth and was a lot of fun for everyone.    

And to prove that our day was a success, both kids were so wiped out that they both feel asleep on our way home.  It was a bit unusual to have such a quiet car ride but it was a nice ending to a wonderful day.