Day 8

We might be having a therapy strike.  If Ben doesn't want to do something...it's not happening.  His hand is like a limp noodle if he's not interested in performing the task at hand (pun intended).  If we're talking about playing with cars...he's all in.  If you want him to work on zipping and unzipping a zipper...no dice.  Fingers like cooked spaghetti. 

We're also learning that the "behavior" issues we are dealing with may not so much be behavior issues as sensory issues.  And when I say "we're learning" I mean I'M learning.  From Miss Jane.  Who is literally one of the smartest people ever.  Basically how she explained it is Ben likely has sensory processing issues because he didn't have "normal" brain development because he didn't have the use of both hands to explore his environment for the first three years of his life like a "normal" baby/toddler.  So what she sees is that he seeks proprioceptive input.  I found this description of children that are under-responsive to proprioceptive input and it SCREAMS Ben:

Some children are under-responsive to sensory stimuli.  They essentially can end up functioning in one of two ways:  either being a “sensory seeker” (you know, those children who are rather bouncing off the walls) or being sort of “bumps on the log”, (essentially because it takes such a high input of sensory input to get them to a normal state that they give up!) but share at their core challenges in processing sensory stimuli.

These children typically crave touch, sometimes repeatedly touching objects.  They can be unaware of light touch or unaware that they are messy or dirty or have a runny nose, and have a very high pain threshold.  They may mouth objects or even be self-abusive.  They often have poor fine motor skills.

Sometimes children who are under-responsive to sensory stimuli have difficulty with auditory processing, say “What?” a lot because they are under-responsive to verbal cues, have a hard time localizing sound, and they like to have any recorded music or media LOUD.

In the department of vision, these children often have poor visual perceptive skills, difficulty discriminating shapes or letters, lose their place when they read or when they are copying something and essentially fatigue with school work.   They often like lots of seasoning on food, have poor odor discrimination, and such.

 So I have a giant questionaire to fill out and then we'll see if we can implement any "sensory diet" ideas to help Ben.  I don't even know what that means yet.  One step at a time.  I'm still processing that Ben probably has a sensory processing disorder.  

Oh, we got this chew toy today and he loved it!  I probably shouldn't call it a chew toy.  He's not a puppy.  But that's essentially what it is.  

 This picture is dark because we spent most of the day with the lights off since he was very "sensory seeking" today. 

After therapy we went to Ted's again.  This time they had mac & cheese available as a side...oh em gee you guys.  I. Can't. Even.

 

 We didn't sleep well at all last night and Ben took a great nap today which I joined him for.  This therapy business is exhausting!  He was a snuggle bug when he woke up...for about 37 seconds.  Then he turned into a WWE wrestler.  

Thanks for reading, y'all!

Therapy Day 6

Therapy went pretty well today!  We ate yogurt again and you can tell he's getting stronger and stronger every time.  Today he got to watch himself in the mirror while he ate and he seemed to love that. 

We got to swing together in the gym.  Ainsley joined us for a treasure hunt for pirates's gold and he is getting SO good at pushing the shopping cart around with his left hand.  The therapy dog, Chivas, stopped by again today and Ainsley got to see him this time.  She is a total dog lover.  Ben takes a while to warm up to new dogs but did eventually.  The therapy dogs are through a program called Hand in Paw and they are absolutely amazing!  These dogs do awesome tricks that are really tailored to what the kids are doing.  They encourage Ben to use his left hand to hide treats in a puzzle for Chivas to find.  They even have co-flex on the puzzle pieces like we use in therapy.  And they visit over 80 places in the Birmingham area so I can only imagine all the things these dogs do! 

After therapy today we went to lunch at Ted's Cafeteria which is right down the block from Children's on 3rd where therapy is.  Woah.  This food was ahhhh-mazing.  Chicken strips, fried okra, cabbage, mashed potatoes, corn muffins, other-foods-I-couldn't-identify-but-I'm-sure-were-delicious.  It was SO good. And the people were so kind!

Then we stopped by the 16th Street Baptist Church.  This was the one place my mom really wanted to visit.  We didn't get to do a tour because they don't do tours on Mondays but she ended up getting a pseudo-tour from a homeless man who actually grew up in the area (or so he said).  And yes, I was in the car with the kids and my mom just wandered off with a homeless man. She returned in one piece and gave him a tip for the tour which he promised not to spend on drugs or alcohol ;)

 Martin Luther King, Jr. was arrested here and then wrote his famous Letter from a Birmingham Jail.  Right here, people!

How eery is it that in this picture my mom took there's a hearse driving by?

I'm going to pause for a second here because I'm clearly teasing some about the homeless man because what a stereotypical situation.  But I honestly think he will use it for his homeless shelter fee like he said he would, he seemed genuinely kind.  SO many people here have asked us about Ben because of his cast and apparently we stick out somehow (maybe the lack of accent) but we've told the short version of our story to multiple people in stores and restaurants and so many kind strangers have said they'll be praying for us.  That is so moving to me and it really just restores my faith in humanity.   

Day 5

We wrapped up week 1 of therapy today and there were definitely highs and lows.  Miss Jane and I are working together on some behavior issues that can limit the quantity and quality of therapy Ben gets done.  He's struggling to listen to directions the first time they are given and to understand that Miss Jane is the ONE person in charge, not mommy.  He seems to think I'm going to "rescue him" from what he's being asked to do.  We are getting a lot of "I can't" or "Mommy, help me" on things we *know* he can do independently or with a very small amount of help.  We don't let him struggle and struggle but we do make him try.  As a general rule at this point we are making him try three times and then we help.  However, he's having moments where he refuses to try at all.  Miss Jane has talked about how sometimes kids are afraid of failure and don't want to try because they don't want to fail.  So when we does succeed we scream and shout and hoop and holler.  :) 

Today we had a tremendous meltdown about refusing to try to eat his yogurt independently but we "stuck to our guns" and here's what happened:

I mean...I can't even.  Tears y'all.  This is big.  And he was SO proud!  He asked to watch this video of himself over and over and over again. 

Day 4

Day 4 of therapy was a GOOD day.  No meltdowns and Ben did lots of great work.  He pushed an age-appropriate button (which just means it was on a toy and it was large) independently and he pulled therapy putty exactly how Miss Jane wanted TEN TIMES!  She nearly cried she was so impressed!

He *finally* let grandma help him eat today.  He's been very adamant about only mommy helping him with that until this point for some reason.  He even said he wanted to use Lefty to help! 

It was cooler and rainy today so no park for us today but we did go out to Steel City Pops which is a local popsicle shop which sounds kind of strange if you're from Iowa but they are not like regular popsicles; they are really creamy, more like ice cream in a popsicle but doesn't melt as fast and a different texture.  Difficult to explain but they were amazing.  My mom and Ainsley had Blueberry Cream, I had Vanilla Bean and Ben had Peanut Butter.  They said the Buttermilk tastes like cheesecake.  I *really* wish these were in Iowa.

Part of our homework tonight was working with therapy putty.  We also got to practice throwing balls.  We picked up some craft stuff at the Dollar Tree to do this weekend too.

I can't believe tomorrow is Friday and we'll have one week done already!  This is flying by! 

Day 3

We are getting into the routine of therapy.  We know what to do when we arrive and what to expect.  Ben usually tells Miss Jane he wants to do puzzles first, she calls it child directed therapy - ha!  Miss Jane has tons and TONS of awesome toys and therapy games and objects.  Today we built a robot with all kinds of magnetic objects.

We did puzzles, read a book where Ben turned the pages with his left hand, and made a card for Grandma Barb using lefty and co-flex tape to assist holding the markers. We got to take theraputty home to play with tonight and we practiced holding a ball in lefty for 5 seconds.  We also got to take home Miss Jane's "magic wand" which is a magnetic wand that we used to practice picking up small magnetic objects by flexing and turning our wrist.  

We had our picnic at the park and played and then stopped for cupcakes to eat later.  These are from Dreamcakes and they were just as good as they look!  Caramel Sea Salt Mocha...I die. 

For dinner we tried Saw's BBQ which has been featured in Paula Deen's magazine.  Ah-mazing.  I had a stuffed tater which is a gigantic baked potato stuffed with BBQ chicken, bacon and green onions.  Oh my Lawd. 

So...I'll just be looking at real estate down here ;)  Have a good night y'all! 

Day 2 of CI Therapy

Well I guess Ben feels at home.  We had a special visitor today - a therapy dog - and when he was asked where he was from he said, "I'm from Alabama!" 

Today was the first real day of therapy where we worked hard for about 3 hours and Miss Jane and I pushed Ben to do things he's never been asked to do before.  It was amazing when they put the cast on how almost instantly the left hand starts to do more.  Now don't let me fool you, the right hand still wants to do ALL the work.  We have to "park it in the garage" aka tie it down so it isn't just automatically doing the work. 

He built these peg towers with his left hand, with help.  We are doing lots of hand-over-hand right now which means Miss Jane puts her hand on his hand to guide him to do the activity or motion she wants to see.  This is how I'm working with him at night and feeding him now too. 

We had our first meltdown at therapy today.  He wanted to eat his snack like a puppy.  He can't feed himself with his left hand so he likes to eat like a puppy and just pick the food up with his mouth.  He's adaptive for sure!  Of course Miss Jane said he was not allowed to eat like a puppy and that led to an epic meltdown but we established who was in charge and that Miss Jane and I were in agreement and want what's best for him and guess who ate their granola bar with lefty (with help)?  Yep, Ben!

In a show of solidarity Ainsley decided to try on Ben's other cast.  Also, FYI, this is her picture taking spot and she can't take a picture these days without making a silly face.  

We found a fantastic park after nap time and I *really* don't mean to rub it in but we played outside with just sweatshirts in January!  It was fabulous! 

A picnic might be in order tomorrow!  Have a good night y'all! 

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!

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.

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.