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! 

Get Rid of Your Junk!

Well, garage sale season is upon us.  My neighborhood has a garage sale and I am joining in this year.  I've been planning on doing this for several months but since we learned Ben got accepted to the constraint-inducted therapy (CIT) program at Children's of Alabama, I decided we are going to use the money we make to help pay for the three week trip. 

I've had a couple people ask if or how they can help...and here's where getting rid of your junk comes in!  If you have anything you are planning to donate to Goodwill or The Salvation Army, consider donating it to...

Ben's Garage Sale Extravaganza!

Don't have any junk to get rid of?  No problem!  Come get some at the garage sale!  Here are the dates:

Thursday, June 5th: 8am - 8pm*

Friday, June 6th: 8am - 8pm*

Saturday, June 7th: 8am - 2pm

*The neighborhood garage sale hours are 5pm - 8pm Thursday and Friday but we'll be there ALL day.  Well Jeremy will be at least. ;)

Leave a comment, email, or text me if you have junk to get rid of!

reannayenger@gmail.com

 This little guy thanks you!

 

 

Birmingham or Bust

It's been four months since I blogged last!  Crazy!  Well, there are probably a million things I could share but I want to get right into some good news.

Ben was accepted into the contraint-induced therapy program at Children's of Alabama.  So we are going to Birmingham!

This is a nationally, and even internationally renowned program for kids with CP or pediatric stroke.  We are scheduled to go in January of 2015 - that's the soonest available.  It is a three week, intensive therapy program.  Ben will go to therapy four or five days a week for three or four hours.  I'm going to go down with him and stay two weeks and Jeremy will come down for the last week while I go home and then bring Ben home when he's done.

So we'll have to buy three round trip plane tickets, find a place to stay for three weeks and buy food, rent a car (maybe - I don't even know), entertain ourselves when we aren't at therapy, and probably twenty-seven other things I'm not even thinking of right now.  Luckily we have awhile to plan...and save...

So what's contraint-induced therapy you ask?  Well, they constrain the "good" hand/arm and force the patient to use the affected hand/arm.  In this program they do that with casting.  They will put a cast on his right arm and hand so he has to use his left arm and hand.  Sounds like torture you say?  Yep, I think so too.  However, it works.  It's proven to improve functionality of the affected hand.  Ben has very limited movement and use of his left hand.  He'll never use it like you and I do but we can only improve from where he's at.  Here's a couple clips I sent in as part of his application:

Let me tell you...he is NOT going to like this.  I anticipate this will be an emotional test as much as a physical one.  I'm kind of nervous about it but these people know what they are doing so I'm going to trust them.  And take wine.  For me...not for Ben. 

Happy New Year...and blood clots

We celebrated the New Year pretty low key.  I worked until 5pm and when I went to leave the rear passenger side tire on my car was frozen.  Like it wouldn't turn, it was just dragging.  I had (like a cotton-headed ninnymuggins) washed my car in the morning before work.  Yes, it was like zero degrees.  But I was trying to be a responsible adult and car owner and get all that salt off.  Plus I have a black car and it drives me crazy in the winter.  So I washed it and drove two blocks to work and parked and went inside.  I think if I had drove around a little more it would have been alright.  Ultimately I had to drive up over a curb to break the ice free.  My dad suggested that maneuver...can't take credit for it on my own.  So luckily there weren't many people around in the parking lot anymore since I was driving all around, dragging a tire and running up over curbs.  Crazy lady!

I made Jeremy come down and drive my car home and everything seemed to be working and is alright now.  We got home and headed over to our neighbors house for a little New Years Eve party...and I use the term party very loosely.  We played Card Against Humanity (hilarious!) and had snacks and watched the kids play.  We headed home about 9:30 and put the kids to bed and we went to bed too.

We had a relaxing morning New Years Day and hung around the house and watched movies with the kids.  My mom came up and we watched the Iowa game and got Olive Garden to go (because I don't take 2-2year olds to restaurants). 

Right about time to eat I wasn't feeling too hot and started having some shortness of breath.  I have had some "episodes" of shortness of breath the last few days but they only lasted a couple minutes.  This one was hanging on longer and I actually did one of the kid's albuterol nebulizer treatments.  It didn't help at all so I texted my friend Jonna who is an ER nurse.  She called me after a few texts back and forth and gave me an assessment over the phone.  She suggested I go to the emergency department and offered to call to see what the wait was like for me (best. friend. ever).

**Side note: The real tipping point that made Jonna tell me to go to the ER and that made me decide I would was that a few weeks ago I received a letter in the mail about some genetic testing that Ben and I had done last summer.  It said I had THREE genetic mutations that make it more likely for my blood to clot.  I have two MTHFR gene mutations and a Prothrombin 20210 mutation.  Ben's Pediatric Stroke Specialist in Indiana had recommended I see a hematologist but I hadn't made time for it yet. 

****Side, side note: Why do we do this as mom's?  I was starting a new job.  The holidays were coming.  We were busy with the kids.  I didn't make time for myself.  If my kid's doctor said they needed to see another doctor, they would have an appointment the next day.  Why don't we take the same care of ourselves?  We're all guilty of it.  Let my story be your lesson - listen to your body and instincts and take care of yourself so you are ABLE to take care of your family.  End rant ;)
 

So my mom was already at our house and stayed with the kids.  Jeremy and I headed down to Mercy where Jonna works.  She wasn't on duty but had called and talked to a couple people about my situation.  I went straight through triage and got a room in the ER.  I had a FABULOUS nurse named Ann who started a (big) IV like a pro and got my testing started.  I had some blood tests and had to pee in a cup to make sure I wasn't pregnant for the CT scan they wanted to do (hilarious if you know us, right).  I waited awhile for all my labs to get done and then they took me down for the CT.  I will add that by this point my breathing had normalized and I was sure I was absolutely losing my mind and they were going to commit me to the psych ward.  So I head down, have my CT with contrast - that was weird - and get back to my room.  The doctor treating me came in pretty quickly and said "Well, there's a reason you've been having trouble breathing." I had multiple blood clots on both sides of my lungs.  I asked my internal medicine doctor today if he knew how many and he said something like not the most but not a few either.  Whatever that means - ha!

I was admitted to the Clinical Decision Unit and got started on Lovenox injections and got my first dose of warfarin - as well as a pantoprazole - is that standard for all patients hospital friends?  Jeremy went home and got me a few things and came back to sleep in the-most-uncomfortable-recliner-in-the history-of-the-world beside me.  Have I mentioned he's the best husband ever?  Yeah, he is.  We got about 4 hours of sleep and then I started having tests in the morning. 

I had a couple more blood draws and then went for a vascular ultrasound where they checked the blood flow in my legs and made sure there weren't any more clots.  Then I went for an echocardiogram which is an ultrasound of the heart.  They made sure there weren't any clots stuck in my heart and checked all the valves and probably a million other things I don't even know about. 

Everything checked out so the internal medicine doctor gave me the option of going home.  He said usually they make people stay while they get their INR (the level the check to see how thick/thin your blood is) stabilized and then they let you go home.  I basically had to pinky swear I would go to my doctor every day to get my blood checked and I would promise to do my injections.  Of course I will!  Let me out! 

So here's the low down: The clots are still in my lungs.  I'm taking two blood thinners to make sure they don't get any bigger.  I will have to take one blood thinner (warfarin) for the rest of my life.  The clots will eventually dissolve and I'll be good as new!  And hopefully I never have another one!