Initiation (Day 1 of CI Therapy)

Well first off, Siri failed us.  Again.  She navigated us to an alley of dumpsters.  No lie.  Luckily it was across the street from Children's on 3rd where we go for therapy so we were able to use our common sense and drive across the street (with a little creative driving and some U-turns).

So our therapist is Miss Jane and she is AMAZING!  She has been doing this since before I was born so she knows her stuff and she's also worked in multiple other areas of healthcare including the NICU, a burn unit, and pediatric psychiatric in-patient unit. 

Miss Ainsley joined us today at therapy and joined us for parts and hung out with grandma other times (aka when she was having a meltdown).  I think ultimately we'll have grandma and Ainsley drop us off at therapy while they are here with us and they can find something fun to do for awhile and then maybe join us for the last half hour or so.

Ben was a ROCKSTAR getting his casts made.  He got two and he chose red and blue.  He didn't cry AT ALL!

He has to wear this ALL. THE. TIME.  Twenty-four hours a day.  It's removable so we can take it off to check his skin and to take a bath.  But that's it.  He also has a contraption that ties around his waist to keep the arm down so he's not swinging that cast all over and really limits the mobility.  I realize this may sound like torture but lots of kids have survived it ;)

Ben did great the entire time at therapy and didn't cry or have any meltdowns at all while we were there.  Once we got back to our hotel and he realized I really wasn't going to take this cast off he kind of freaked.  Any task is nearly impossible.  He can't feed himself.  He can't play with toys.  He can't pick up a cup and drink.  It's harder to catch himself if he falls.  He's lost his independence.  And he's understandably frustrated.

Here's a video of him eating goldfish.  I told him he can't say "I can't" but he can say "it's hard" or "I need help" so he quickly learned how to get the goldfish.

We got outside after a nap and got some fresh air which seemed to help.

We have to go get our nightly homework done!  Y'all have a good night!

We Made It!

Day 2 of travel went much smoother than day 1 and we have arrived at our destination and our settled in!

While we were awake by 6am we took our time eating breakfast and let the kids run around a little and got on the road about 9am.  We were into Tennessee right away and decided to stop in Nashville and see Opryland.  We actually intended to see Ryman Auditorium, the original home of the Grand Ole Opry but Siri navigated us to Opryland, home of the ginormous new Grand Ole Opry facility, resort, and of course, in true American fashion, gigantic mall.

We made it to our hotel - we're staying at an extended stay place so we have one bedroom, a pull out sofa, and a little kitchen.  I'll try to get pictures tomorrow!  They happened to give us a handicap accessible room, I think it was because it was what was clean and ready when we checked in, but it didn't have a bathtub and Ben isn't really keen on showers so we asked if there was any possibility we could change rooms.   We could but we'd have to wait at least an hour.  So we could stay in our current room and "maintain" it.  Yeah, sure buddy.  You try "maintaining" a hotel room with 3 year old twinadoes.  So we went to Wendy's and Wal-Mart.  We stocked up on groceries and all the other random things you never knew you needed until you went to Wal-Mart. 

When we got back to the hotel our new room was ready.  But it was in a different building.  And on the third floor.  So we had to carry all the groceries upstairs (note: there's an elevator but it's slow and I'm impatient) and then I had to go across the parking lot to the building we started in, get all our belongings, which were thankfully on a cart, and take them downstairs, through the office, outside, across the parking lot, inside the new building, up to the third floor (in the elevator) and unpack in our new room.  Phew.  That was my work out for the day.  We had to turn on the air conditioning because it was hot.  No joke. 

Everyone got baths tonight and we are ready and excited to start therapy tomorrow and see what this is all about! 

Other random thoughts:

Why is the speed limit in Tennessee 24 MPH?

How is it January and these flowers are still so green?!  And why do I still live in Iowa?!

Bama Bound

We're on our way!

We got out the door (almost) on time this morning.  We picked up Grandma Barb and headed east.  For anyone who didn't hear, Ainsley got to come with us!  She will be flying back to Iowa with grandma Barb next week.  This way Ben and Ainsley aren't separated as long and Mom and Ainsley aren't separated as long.  We borrowed a DVD player so the kids were able to watch movies, they colored and ate tons of snacks.  Ainsley didn't nap at all before we stopped for an early dinner.  Which ended up in a total meltdown for both of them.  As soon as we got back in the car they both promptly fell asleep.  We made it to Kentucky just a few miles from the Tennesee border.  We have about 3 and a half hours of travel time left for tomorrow so hoping to do a little sight seeing in Nashville and then get settled in when we get to Birmingham.

Thanks for all the prayers and messages!  I'll be sure to continue to answer them as I can!

Happy New Year!

A year ago today I woke up in the hospital.  Well, that's not really accurate.  I didn't actually sleep much to have a real "wake up moment."  Those hospital beds are NOT comfortable.  And it's noisy with the beeping and whatnot.  I was blessed to walk out of there the day after I walked in and go about my life like normal (mostly).  The new year and the year anniversary of the day my pulmonary embolisms were found has been good for reflection.  And for looking forward!

At the time I joked about it.  I downplayed it.  "Yeah, I had multiple bilateral PEs.  NBD."  But it was a big deal.  It is a big deal.  Do you remember Marlise Munoz?  She was the woman in Texas who all but died from a pulmonary embolism while making her son a bottle but happened to also be 14 weeks pregnant...begin a weeks long battle about keeping someone "alive" to support the growth of a fetus.  Well, that's all a different story for a different day, but that could have been me.  We both had PEs.  She died.  I didn't.  God decided I get to stay here.  And let me tell you, I'm thankful every. single. day.  My knee-jerk response is still to joke and downplay it though.  It's hard to be this serious all the time, depressing even.  But I take my health seriously and I do what I have to do!  Even if it gets annoying to check my INR all the freaking time. 

I sincerely thank my friend and personal nurse Jonna for convincing me to go to the ER that day.  As I'm sure you all know my only symptom was shortness of breath.  But not OH-MY-GOD-I-CAN'T-BREATH-I'M-DYING shortness of breath even.  Just kind of like winded but only sitting on the couch.  And it would come and go.  By the time I had my EKG and CT scan at the ER I was feeling completely better and was 100% certain they were going to admit me to the psych ward for my phantom symptoms.  So what I want to say here is trust your gut...if something feels off - get it checked out!  Don't worry about what other people think.  If your nurse friend says to get it checked out, RUN, don't walk to the doctor.  They know what they are talking about.  They've seen stuff.  Didn't Oprah always say to trust your gut?  Oprah's a smart gal.

 

So why am I rambling on about this you ask?  Because it's my blog.  And I do want I want!  Kidding (sort of).  My point is take care of yourself!  Do it for your kids, your spouse, your parents, your friends, but maybe even more important do it for YOURSELF!  Because YOU are worth it!  Listen to your body.  Do things that are healthy.  Eat real food.  Exercise.  Meditate.  Practice yoga.  Try something new this year!  I'm going to blog about some of the new things I've found passion in this past year like yoga and macronutrition.  Don't worry, this isn't a health blog now.  My last meal still includes McDonald's french fries with extra salt. 

So enjoy the NEW YEAR!  The whole thing.  Every. Single. Day. of it!

Almost Time

It's almost time to go to Alabama!  I'm so excited and so nervous at the same time for this trip.  I cannot wait to see how Ben does and I have super high hopes for how awesome he is going to do and that he will gain tons of function with his left hand though this program.  But at the same time I am so scared.  Like crapping my pants, out of my mind scared.  He is going to have his "good hand" casted and completely unusable 23 hours a day.  He is going to be SO incredibly frustrated by that.  I anticipate BOTH of us crying.  A LOT.  The first week.  And him hitting me with the cast.  That will happen.  I can hear it now, "Ben, casts are not for hitting."  Thank you God for letting MY momma come with me that week. 

Here's what else I'm scared about.  I have to leave my baby girl for two weeks.  My momma-loving, clingy, "No! Mommy do it!" sweet pea.  I'm going to miss her and she's gong to miss me.  Thank the Lord for Face Time. 

Our plans have changed a little.  We've decided to drive down in our Prius because it's significantly less expensive that flying and renting a car.  Here's the neat thing though.  The thing that brought tears to my eyes because there are still nice people in the world.  We bought our Prius at Wilson Toyota in Ames a several months ago.  During the process we talked to the gentleman helping us, Tron, about our family and Ben and his CP and our trip to Birmingham.  A week or so ago we got a phone call that Wilson Toyota had arranged for our rental car while we would be in Birmingham and to just call them for the details, it was taken care of.  Can you imagine?!  We crunched the numbers and it's still less expensive for us to drive down than to fly even if we don't have to pay for the rental car but you guys...how awesome is that?  I mean, I didn't know businesses did that.  Wow. 

So we are going to be looking at our on-way tickets this weekend - to recap, my mom, Ben and I are driving down, Jeremy will fly down (1-way ticket) after the first two weeks, I'll fly home (1-way ticket) and trade places with him, and my mom will fly home after the first week (1-way ticket).  Then Jeremy and Ben will drive home after the last week of therapy. 

We talk with Ben and Ainsley about therapy in Alabama so they are getting prepared for what's going to happen. 

And Santa *might* be bringing Ben a Leap Pad to help pass the time when we aren't in therapy.

Thanks for reading!

What's a blog post without a picture? 

Enjoy one of our family pictures by the lovely and talented Audrey Oliphant.

Well, Well, Well...

Where does the time go?!  It's been over 4 months since I blogged.  This working mom stuff ain't no joke!  I need about 6 more hours in each day and I *might* get to the bottom of my to-do list.  A half million things have crossed my mind that I need to blog about and of course I can't remember any of them right now.

Let's just dive in with a generic "What Have We Been Up To" post.

Well...recently Halloween.

We did a family costume theme this year.  I'm trying to get away with it as long as I can.  The whole things was inspired by Ainsley's hair - she was, of course, Orphan Annie.  Jeremy was Daddy Warbucks, Ben was Punjab and I was Miss Hannigan.  The kids did great trick-or-treating - I was super impressed.

We've also been working on re-doing the kid's bedrooms.  We just split them up into their own rooms and slowly decorating their "big kid rooms."  Here's a sneak peak of Ben's Superhero Room!

Ben started preschool last month.  He qualified to start as soon as he was three because he technically qualifies for special education services because of his lack of fine and gross motor skills because of the CP.  We couldn't be more thrilled about this!  He is absolutely loving school - he gets to ride a school bus - and an additional year of preschool can only help him. 

There's no down side.  Well, except maybe that Ainsley doesn't get to go and she's pretty bummed about that. But she did get a little one-on-one time because of it.

Oh!  And she got to start dance lessons!

We ran the Des Moines Half Marathon again this year.  I didn't quite make the time goal I had in mind but I did PR so I'll take it!

I'm excited to start blogging again and really hope to make an effort and stick to it.  It's like free therapy. 

Garage Sale and Bake Sale

I would say our garage sale was a success!  We got rid of loads of stuff we didn't need anymore and made over $800 to put towards our trip to Birmingham.

Let's talk about that really quick.  So we are scheduled to go down January 2015 (that's the earliest available).  My mom and I will fly down with Ben and I'll stay the first two week of therapy then Jeremy will come down and I'll go home - we'll sort of trade off - and he'll stay the last week of therapy with Ben and fly home with him.  It would be fabulous if we could all go down as a family of four for three weeks and enjoy the time together but we can't take that time off work so this is what works for us and we are counting our blessings for it!

So right now airfare is kind of ridic.  Since it's a ways out I'm hoping prices will come down.  I still need to look into the extended stay places down there.  I'm hoping to just rent a car on the weekends and walk or use public transportation during the week.

My amazing friend Kelly has AMAZING daughters who wanted to have a bake sale in conjunction with our garage sale for Ben.  Isn't that the sweetest thing you've ever heard in your entire life?  So they made all sorts of baked goods and set up a table and sold the heck out of them!

Miss Riley in charge of the sale

[Hot Mama] Kelly

 Hayden (who wasn't a huge fan of getting her picture taken)

My mom hosted a Scentsy basket party and the consultant, my cousin Jeannie, donated her commission to Ben's trip as well!  Super sweet and who doesn't love Scentsy?!

We also have had a few people ask if they could just give a donation and we have decided to say yes to that.  So we set up a youcaring.com page that can be found here.  

We also welcome all prayers just as much, if not more, than any donations.  It means the world to know y'all are thinking about our family and praying for everything to go well for Ben!