Monday, June 10, 2013

Table Rock and Branson Vacation

My parents came into town when Jon had a week off so we rented a condo for a week at the lake. We had tons of fun and it was really nice to have a break from the endless to-do list. Benson also got a break from his therapies and stander. I guess that's a good thing. Everyone needs a break sometimes, right?   The condo wanted you to pay $20 to get their wifi code.  We felt like it was a rip-off by principle so we refused to pay.  It was actually amazing spending a week unplugged.  I had so much extra time!  Added on top of the fact that I had determined to take no "responsibilities" with me.  I tried to get everything pressing done beforehand so that I could truly be responsibility free for one whole week.  It just felt so good.  It was hard to come back to reality.  Like, really hard.  I kind of want to go back that world.  Sigh....
Day 1.  It was Sunday so we took a chill day and hang out in the condo, threw rocks in the still-too-cold-to-swim lake and went hot tubbing.
 The swimming pool was probably the same temp as the lake and no one wanted to get in.  But, I didn't want them getting too hot so we would cool off in the pool too.  No one liked the pool...except Brigham.  He seemed oblivious to the temperature.





 On Day 2 we went to Silver Dollar City.  It's the local amusement park themed like a western town around the time of the silver and gold mining.  There were several rides that Vanessa was tall enough to do and a few that Brigham and Benson could do.  We finished that day up with some more hot tubbing.




 Tuesday was supposed to be our warmest day so we went to White Water that day.  It's the sister water park to Silver Dollar City.  It was freezing.  Not my favorite activity.  It would have been better if it were warm, it was just not summer weather for us.  I'm a little miffed by their rule that doesn't allow kids to ride laps on tubes.  Put a damper on the activity possibilities for Benson. 






 We had lots and lots of treats.  And tried to get some good sleep.  Although, I felt more tired upon returning than I did leaving.  I'm not sure how that happened, but it did.  Too many late night card games with my parents I guess.  Or it may have been the fact that sometimes the kids prefer to sleep on us rather than next to us, not sure.  On Wednesday we went to Branson's Wild World.  It sounded really cool.  It was fun, but not what I expected.  I thought it would be more of an aquarium but it was more reptiles.  They had some crazy snakes and some crazy snake facts.  I don't ever want to live in Africa because I am now terrified of the cobras and mambas.  There was another that was terrifying but I can't remember it's name.  We didn't take any pics there for some reason.  But we also ate at Panera Bread (YUM!) and some Andys.  My two favorite food places of Missouri.  The next day we went to Dogwood Canyon.  It's a beautiful paved bike ride with tons of waterfalls and picturesque scenery.  So picturesque in fact, that we got sick of waiting for Jon and his picture taking that we ditched him.  Ha.  We biked on and met him on the way down.  He was still only about 2/3 of the way through.  So we left him at the park (we had driven two cars) and he got home a few HOURS later.  He got some awesome pictures though.  Vanessa rode about two miles on her bike before she decided she needed a ride.  I was so proud of her for going so far!



 The last day we kind of chilled at the condo in the morning.  We did miniature golf and then decided to head in to Branson to get some dinner at Branson Landing.  The kids enjoyed the fountains and a play area, as well as the candy store.





It was a fabulous vacation.  I enjoyed realizing how much I like being unplugged.  It was also a change of pace to have some alone time with Jon after the kids went to bed.  It's hard to have conversations with him when the kids are awake.  Vanessa tells us all the time that she doesn't like it when mommy and daddy talk.  We can talk later she always says.  Haha.  The only problem is later never happens.  Today I am wishing we could be like the super rich of Pride and Prejudice that have 5000 pounds a year and yet we never have to work.  We spend the day walking through the gardens and going to parties in the evenings.  That sounds much easier than my to-do list of today.  The vacation and break from reality was sure fun while it lasted though.

Friday, May 24, 2013

Genetics

Jon and I had some genetic testing done.  We used this company.  It is a panel of 100 genetic diseases that are all autosomal recessive.  That means a child has to get two copies of the defective gene in order to develop that disease.  Here is a little infographic for SMA, but it applies the same to all autosomal recessive diseases. 
This panel of testing was developed by a bunch of doctors from Harvard.  It is meant to be preventive testing prior to getting pregnant, at an affordable cost.  We chose this method mostly because it is cheaper to do this panel of 100+ diseases than it is to get specifically tested for SMA.  The chances of only one of us (or neither of us, which would mean it was a spontaneous mutation) being a carrier were slim, like 2% slim.  But I felt like I had to know for sure.  The results came back this week.  The logic of probability and genetics won again.  We're both carriers.  I was fine for the first couple days after getting this news.  But it kind of reduces the likelihood that we'll have more children.  Last night I went into the attic to make sure I had all the summer clothes out for the boys in their current sizes.  I saw all Vanessa's old clothes sitting in a tote and suddenly the realization that I didn't need to save them anymore hit me hard.  I have always wanted another girl, and Vanessa asks frequently for a sister.  It crushed my heart for just a moment that it might never happen.  I pushed the thoughts away somewhere to be dealt with another day and continued my search for the here and now.
 
I feel like I can't bring up preventive genetic testing without bringing up the ethical issues this has.  I was actually really impressed with this company because they sent me a bunch of literature to read and specifically one article discussing "Designer Babies."  I have HUGE issues with the whole idea behind Designer Babies.  And we won't even touch on abortion because I'm also opposed to murder and they're the same, right?!  So, back to Designer Babies.  Sometimes I wish Benson didn't have SMA but then I wonder how that would change him.  I love Benson just the way he is and even though I wish he could run and play, I love the qualities and tenderness this trial has taught him.  Would he be a different person without having body to deal with?  I don't know.  So if we were to have another child and decided to use IVF with PGD to ensure a child without SMA, would we be robbing that child of their trial that was meant to help them grow and become an amazing person?  Are we meddling too strongly with things that only God should be left to control?  Or are we using the ingenuity and technology that God gave us to "heal" that child before they are born with a fatal disease?  If there were a cure for SMA, we would surely use every resource we had to make sure Benson got it, so why not use every resource to prevent it from happening?  But then we are in a circle again, see questions above.  The only con to these tests that I see is people finding out they could have a child with a specific disease, deciding not to do IVF, but doing amnio and getting abortions until they have a "healthy" baby.  It sounds morbid in a way, but I honestly heard a woman say they were trying IVF after two failed natural conceptions.  It kind of blows my mind.  So what then, is the pro to the testing if there is nothing to do with the information.  I guess I just like knowing.  There may be some diseases where something can be done in utero, or immediately after birth to improve outcomes.  I know this is the case with PKU, but I don't know much about most of the diseases.   And, I won't lie, it's oddly fascinating to me to know what is lying around in my gene pool.  The literature said that the average person is likely to be a carrier for 4-6 diseases.  SMA is the ONLY disease I am a carrier for.  Ironic, that's all I can think of.

Thursday, May 23, 2013

Vanessa's Birthday

On Saturday was the trophy meet.  After some house work and playing with neighborhood friends, we had to run some quick errands.  This included stopping at Sams Club to get "The Big One."  The Big Birthday gift.  On Sunday, we gave Vanessa her big gift, which was a trampoline.  She was pretty excited and has jumped on it quite a bit.  It took forever to set up, not the leisure or family friendly Sunday activity we were hoping for.  But it did get set up and before the birthday party.  So that takes us to the birthday morning.  Vanessa woke up and asked me if she was 4 yet.  I told her she was born in the afternoon, so technically not yet.  So then all day she told everyone she wasn't 4 yet.  Ooops, too confusing for a 4 year old.  For breakfast she had toast with strawberries and chocolate sauce and whipped cream.  Then we had to continue with our usual Monday mayhem which includes gymnastics first and then swim therapy for Benson in the afternoon.  I didn't want to spend all of Vanessa's birthday getting ready for her party so I had done as much beforehand as possible and kept things as easy as I possibly could.  We still had a few things to finish up though so the kids helped me frost a few cupcakes.  Then they got bored so we spent a few hours jumping on the tramp.  Then went in for lunch and then headed to swimming.  Luckily, we passed Jon on our way so we switched cars.  He took the kids to swimming and I ran a few last minutes errands and finished the party prep.  Everything was ready when they got home so Vanessa opened a few more gifts from me and Jon.  We got her some more dresses (since that's all she wears), some Crocs, Doc McStuffins play doctor set, Mermaidia the movie, and a new board game.  Then the friends arrived for the party.  We invited Durtschis, Daughertys, Halls, Firmages, Fairbanks, and Lorences.  We had pizza, grapes, salad, and punch.  I had a few games planned but most of them involved water and it ended up being chilly.  So we were going to play Limbo and do a Hula Hoop contest but the kids weren't diggin it.  So we did the pinata and then opened gifts.  Oh, and they definitely jumped on the tramp.






 







I made mini cupcakes for the kids.  Which I think is way better because you get way  more frosting to your cake.  But they were all totally bummed that the big cupcakes were for the adults.  Plus, some kids can pound like ten of those puppies but some only eat the frosting off.  So it's less wasting this way too.  I think I had around 40-50 mini cupcakes and those 12 kids pounded those.  There wasn't one left over.  Well, Knox licked the frosting off like 3, but I'm counting those as consumed.  The party went from 5-7 and literally as soon as everyone left, the Tornado storm moved in.  I told everyone it was waiting for the party to end because I had prayed that everyone wouldn't be inside eating on the new floor.  Ha! 
It was our first tornado warning here in Missouri.  I won't lie, I panicked a bit.  I rushed to get the flashlights batteries changed. Jon fiddled with the weather radio.  I had the news on in the background.  I was listening to the hail on the window practically sure we were going to have to head to the closet any minute.  But, it blew over and no closet refuge necessary.  It was heartbreaking though to hear that a tornado did hit Oklahoma City and it got hit hard.  It took down two elementary schools and a hospital.  Last I heard, 24 people had been killed and 9 of those were children.  The tornado hit around 3, so the kids were in school.  It made me feel that gut wrenching feeling of having to send my kids to school one day all too soon.  Almost as bad as the day of the Colorado shooting. 
Before I digress anymore, while we were getting the tornado preparedness under control, we were also calling grandparents so they could sing happy birthday and Vanessa opened presents from her grandparents.  Grandma and Grandpa Purdy sent her a big Rapunzel doll and matching dress up and also a Cinderella snow globe/music box.  Grandma and Grandpa Brady sent her 3 Barbie movies, a bag to hold activity books and crayons, a nightgown, and a Happy Birthday sign.  She is definitely one spoiled girl!  We finally headed to bed though I made Vanessa sleep across the hall in Benson's room and checked the weather until midnight, just to be sure.  The next morning there were two trees that lost branches on either side of us.  But our tramp was ok :)

All About Vanessa

Vanessa had her first gymnastics trophy meet on May 18th.  I was so proud of her and she just loved it.  They did a routine on the floor, vault, beam, and bars.  The bars were really scary to her at first, but her teacher, Nick, is really patient and helped her to feel more comfortable and she's doing really great.  I think Vanessa has amazing potential in gymnastics.  We are going to start taking her to the open gym days on Saturday to see if it is something she wants to pursue more seriously.  If it were something that would make her happy, I think she could be awesome.  I am sure I am biased, but she seems to have a lot more control and strength than a lot of kids her age.  It will be fun to see what she decides to do in gymnastics and how far she wants to take it.  But she sure loves it and I can tell she feels proud of herself when she does well too!




















I thought it was cute getting her trophy, she had watched all the other kids stand there and pose, but when it was her turn, she just wanted to bust out of the lime light as quick as she could. She does get a tiny bit shy when lots of attention in on her, though she isn't shy generally.
Vanessa is so much fun. She has a great imagination and always wants us to play her pretend games with her. She wants someone to play with her pretty much every waking hour. She can play alone, but she doesn't like to and she will seek out friends to keep her company. She has made some great friends in the neighborhood and has become the neighborhood little sister. She loves to play with all the kids and actually plays really well with all of them. The older girls love her and she's the little sister they all want, like the kind that you can play with for an hour but won't come home to touch your stuff :)
Vanessa is absolutely ecstatic for preschool. We went to a preschool meeting and she could hardly wait to start school. It was tough explaining to her that it was for the fall. She is doing pretty well learning her letters. She recognizes more of them than I give her credit for. She is starting to actually draw pictures of things and we have some great artwork by her. My favorite part is always the explanation of what the picture is.
Vanessa loves her younger brothers. She really wants to nurture them like they are newborns which can get an interesting reaction. She is starting to play better and better with Benson. I'm always reminded how well she does play with her brothers when I see other kids not tolerating their babies at all. She puts up with a lot of "baby behavior."
Vanessa is starting to be a big girl. She is dressing herself most days. I am learning that she doesn't like being rushed. I have to give her the time she needs to let getting dressed take an hour. Yes, it can sometimes take an hour. She is easily distracted by that great imagination of hers. I am also learning that she doesn't like being a helper with "things" but she will be a helper with Brig. If I ask her to get me something, there's not a chance in the world she'll do it. If I ask her to watch Brig, so I can get something, she's excited about it. She's just all about being with people, in every single way.
Vanessa rides her bike with training wheels like a rockstar. She has a hand-me-down bike with no training wheels that she really wants to learn how to ride. We are working on it slowly and practicing a bit every day. She just might have it by the end of the summer.
Vanessa loves to search for bugs, play dress ups, draw with sidewalk chalk, jump on the tramp, watch movies, jump on the bed, and hide in pillows and blankets. Her favorite colors are pink and purple. She loves things to be beautiful and wants her room painted REALLY bad so it is beautiful. Her favorite name for her toys is "Prettiness." And if we had a dog, she would name her Prettiness. She wears a dress nearly every day and sleeps only in nightgowns. Her favorite foods are cereal, root beer floats, blueberries, broccoli, and milk. Her best friends are Sophie, Reese, and Bailey.
We just adore this girl and everything about her.