The Pics For The Previous Post

Jon setting up his table saw, the garden in its present state (we pulled the pees last night. They were done. Sad day. Wish they lasted forever), and the play room in its present state.

Happy Fathers and Mothers Day

I don't think I ever blogged about Mothers Day, or Fathers Day.  Both were pretty chill days.  I kind of dropped the ball on pre-planning a Father's Day meal, but luckily I was able to thaw some steaks, boil some corn on the cob, salad, and something else Jon loves I'm sure.  No potatoes, which is a bummer because that would have probably won me some extra bonus points.  I had a REALLY hard time deciding what to get Jon for his birthday.  We are cutting back expenses and trying to put more into retirement and a 529 for the kids (I used a CNN calculator that said their education will be anywhere from $150,000-200,000 for a four year degree.  Wha?!)  Anyway, so deciding how much to spend was a serious dilemma.  I had wanted to get a table saw but couldn't decide whether or not it was good timing to spend that kind of cash.  I asked Jon how much he thought I should spend and in typical Jon fashion, he told me not to spend anything since he recently got a truck.  I don't think I blogged about that either.  Sheesh.  Anyway, I wasn't going to not get him anything so one day I just bit the bullet and got the saw.  I'm glad I did because he loves it.  Although we had a MAJOR scare today with it.  We had just gotten home from gymnastics with Vanessa.  Benson fell asleep in the car so I carried Brigham inside and then went back out to get Benson.  While I was laying him down I heard the table saw go on, and I knew Jon wasn't home yet.  I ran out as fast as I could, my heart racing.  Brigham had turned the saw on but had immediately waddled away from the crazy loud noise so he wasn't in any danger.  But it was still terrifying.  He can't reach the actual blade and it is the general policy to always unplug the tools since Brig is obsessed.  So, now that I have completely digressed from the point....The table saw happened to be on sale at Amazon.  And a real sale, not just they marked up the regular price so it looked like a sale.  Since I had been staring at the saws for over a month I was very familiar with the price.  I also locked into the Amazon Prime trial and got free shipping which saved me $85.  I miss having free Amazon Prime with Amazon Mom.  That was pretty awesome.  Sigh.  When the saw was delivered, on like Wed or something before Father's Day, Jon was the one that received it, not me.  And it was quite obvious what it was.  So I walked out to a very confused Jon and UPS guy.  I assured him we had ordered and said, Happy Father's Day.  Climax fail.  What can ya do?
Mother's Day.  Jon is always really good about getting gifts on holidays.  Which is funny because I thought men all forgot that kind of stuff.  Jon never does.  Although, it has only been six years.  And, I will say that I am probably one of the pickiest people ever to shop for.  I expect too much from a gift and I'm working on it.  It's totally not about the price tag for me.  Actually, expensive gifts stress me out and make me mad (see birthday, oh wait, I didn't blog about that either.  Ha!).  Jon did great this holiday though.  He got me a gift card to JoAnns, an herb grinder, a pineapple corer and slicer, and a punch server thing.  I am always slightly embarrassed when we have people over about my lack of anything to serve food in.  We're on the right track here.  It was a fun day with family and hanging out.  Jon even got up with Benson in the wee hours of the night. 
Other events that should be documented.  Benson said the prayer all by himself the other night and the entire prayer involved asking Heavenly Father in various ways to protect him from Brigham.  Brigham doesn't quite understand how to be soft with Benson.  He makes Benson really nervous.  But they still have a really cute relationship and it's hilarious to me when Benson talks to Brigham in his baby voice, kind of mimicking adults. 
Vanessa and Benson have always been pretty good about getting along and being nice to each other but they just kicked that up a notch lately.  They are getting along so well!  Vanessa is being an absolute sweet heart.  She is getting things for Benson, helping hold him up sometimes, sharing even better, and I think legitimately enjoys spending time with him.  It makes me so happy, there are no words.  She also loves Brigham to death, even though he is less than affectionate with her.  He loves to play, but only when he is in the mood and he's kind of a moody baby.  He takes tantrums to a new level.  But he can also take happy to a new level and makes us laugh, really hard, all the time.
Vanessa had her first private lesson for gymnastics and the asked her to join the pre-team.  Pre-team is what is sounds.  The young girls train together until they are able to compete on the team.  They don't compete until age 6.  But pre-team, similar to the team, is by invitation only.  They said she is very talented and has powerful legs.  Her jumps are amazing!  Literally, she can jump higher than I could have in high school (which I would consider my athletic prime).  She is literally amazing to me.  I'm really excited to see how well she does and where she wants to go with this.  She will practice twice a week for an hour and a half.  It sounds like a lot for a 4 year old.  I think it will be a great get away for her through summer, though I'm super anxious about how it will be once she has school.  I'll miss her being gone so much!  So, we'll cross that bridge when it comes.  As soon as she is not having fun or it interferes with family, school, or church, we'll have to call it quits or back off.  But we'll play it by ear and enjoy the journey.  I think she has amazing potential.  It was really cute watching her at the private lesson.  She adored the attention and beamed with shy pride when we talked about talented she is.  I've asked her several times if she wants to go so often and for so long and she says, "I think I would like that." or "I think I can do that." or "I think it will be fun." 
Benson saw a pulmonologist and his lungs and respiratory function still looks great.  His chest x ray looks great and the his bell shape is less than the dr expected.  We also had a back x ray to check for scoliosis.  He had one about a year ago and they said it looked like there was a six degree curve but it could have been positioning.  We have a different doctor now, obviously, but he said almost the same thing.  Only this time he said it looked like the curve was around a 12 degree curve, though it could have been due to positioning.  I'm thinking it's an actual curve since the degree is increasing and it's shown up on both x rays.  It makes me feel a little paranoid about having him wear a back support.  Luckily, First Steps just got our Benik wrap in today.  It has aluminum stays to help support.  It is made of neoprene, but it's like a funky neoprene I'm not a huge fan of.  What do you do though?  It's not like shopping for jeans.  There aren't many options.
We were also very blessed to be told about an organization called My Gym Challenged America.  Our physical therapist told us about it so I jumped on and applied.  You just give a little background on the disability and tell them what you would like in equipment, up to $500.  I asked for Bamboo Braces and an adapted tryke.  I didn't really expect to hear much back but we got a call only about a month after I submitted his story that said they were going to grant his wish!  I won't lie, I totally started crying.  It was on a day when SMA was getting me down and the $$$ that goes with it.  It turned out that the tryke in his size would be $800!  It was because he needed a smaller size and the considered it custom.  So we got the size bigger that was "only" $400.  We have already received the Bamboo braces and they are awesome!  They are neoprene too but they are a good neoprene.  Not fuzzy, just smooth.  Does this make sense to anyone?  Anyway, we haven't heard much on the tryke so we'll see when that arrives.  I'm excited to try it out.  All his neighbor friends are excited for him to come ride bikes with them.
Speaking of riding bikes, Vanessa has been practicing riding without training wheels!  She is doing so great!  She is still really cautious and gets pretty worked out with the frustration.  We can only practice in about 15 minute increments before we are both ready for a break.  She can go straight for a couple houses without falling and without help.  She hasn't decided if she's ready for turns yet though.  And she doesn't like starting on her own.  I think she'll get there by the end of summer though.
I feel like I should say more about Brigham.  He has 8 teeth now.  He is walking around like a champ though sometimes he can be kind of like a drunken sailor.  He has figured out how to open doors.  He likes to close them and then screams bloody murder until someone comes and opens it.  He is starting to allow other people to hold him.  He seems to like men more than women.  He still doesn't like being left with a babysitter and is especially clingy the day after we leave him.  He doesn't need to be held as often during the day though which is really nice.  I feel like I can get a lot more done in a shorter amount of time.  He is also into more things though which equals more to clean up, kind of ironic.  He doesn't really say any words.  Seriously.  He says, "hi-da" "uh-oh" "whoa" and "ba."  He will occasionally say "ma."  It's rare though.  However, he says phrases.  You can't actually pick out the separate words, but he can totally understand what he is saying.  It's like the consonants are all in there slurred together.  I won't try to write them like he says them, but his phrases are, "what's that?"  "where'd Brigham go?" and "there he is!"
We are still punching away on the toy room project.  It's slow progress but we have trim on the door, paint on the top half of the walls, and one sheet of bead board up.  We just need to get the rest of the bead board up, baseboards, and paint.  I am really happy with it.  I think once the toys are in and organized so Benson has access, we'll love it even more.
oh, and I'll post pictures of the garden soon.  It's so exciting watching everything grow!  And we started the Summer Reading Program through the Library and have some very exciting activities coming up.  And lots of reading.  I read to the kids today for an hour straight.  One hour.  I couldn't believe it held their attention that long.  Benson was distracted after about 40 minutes but continued looking at books and making up his own stories while I read to Vanessa.  She hung on every word the whole time.  So impressed with my kids.  I am so lucky.

Thriving

Check out this garden! I'm so excited to start eating it all! There are tons of blossoms on our chest high peas. The corn is about mid-thigh. The tomatoes are ready for their cages and have a few blossoms. We have already had a few strawberries but most have been taken by bugs. As much as I tried to avoid it, I think bug spray is going to be inevitable. I tried a clove/oil/water spray on a tomato plant. I got rid of the bugs all right but also burned up some of the leaves. I guess I used too much. I put a bit on the strawberries though and it didn't seem to help with bugs.   

Other big news, Brigham is walking! He started walking just about June 1. We're super excited and hope his mobility helps with the tantrums :)

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.

Kids Pics May 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.

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 :)