Day 12

Today started off much better for the entire Yenger family.  Ainsley got her mother to herself all morning.  I suspect that make up was "applied" at home, prior to leaving for daycare.  I suspect that Ains was happy to be the lone apple of her mother's eye.  Reanna's day started off by NOT having the smoke alarms go off, and by NOT getting stuck in the snow.  This marked a vast improvement over yesterday!

Ben had a fantastic day at therapy, marked by two high points.  First, Chivas, the therapy dog from Hand in Paw was nice enough to come back and visit.  Ben is usually a bit slow to warm, but on this visit with Chivas, he was awesome.  He saw Chivas at the door and asked Ms. Tina - his human assistant - to bring him in.  Ben and Chivas played hide-and-seek. (Ben hid the food in a dog toy and Chivas found it and ate it.)  Ben acted like the gentle boy that he is, softly petting Chivas while he just laid there, all too happy to take the loving.

In addition to providing Ben with a positive and rewarding experience, Ms. Tina also brought along a photo album of Chivas.  Ben did even better here.  First, Ben was a champ at turning the pages of the photo album. Second, Ben did an excellent job of show Ms. Jane hie ability to "point" to stuff.  While the pointing was "whole hand" and opposed to a single finger making the motion, the behavior is the precursor to traditional pointing.  Ms Jane was quite excited!

After Chivas left, we did a few more activities, then it was time for a snack.  Today, we skipped yogurt and opted for string cheese.  It was really cool to watch Ben eat string cheese just about as "normal" as any kid not affected by a stroke.  Really, it was boss.  To demonstrate the point, here is Ben eating... you're welcome...

Enough close-ups of Ben eating for you? Nah... I suspect you'll deal.  The second highlight of the day was Ben's playing with another little boy, M.  M was probably 6 and obviously much bigger than Ben.  That said, M was nice enough to share his air hockey game and man did we have fun!  No pictures attest to this awesome event, as dad was sent chasing errant hockey pucks!  A good little work out, I don't mind saying. We played for about a half hour.  Both of the boys seemed to enjoy it, and Ms. Jane found it beneficial to Ben in a number of ways, so we just let them have at it!

After therapy, we came back to the room.  Grandma made some chicken and rice so we ate and then laid down for a nap.  After nap, Ben did his "homework," which consisted of puddy pulls, puppy crawls, a supination exercise, and some more puddy pulls for good measure.  We also spent some time playing with cars, essentially doing an  adduction exercise with his left hand.  He was having a blast, so we played until supper time. 

Supper tonight was at a place called "Cantina," a Mexican grill that was once an old warehouse in downtown Birmingham.  Ben enjoyed some chicken enchiladas and beans.  We'll see just how magical those beans are tonight...

Anyway, tomorrow is Wednesday, hump day... We are all looking forward to being reunited with the girls, soon!

Peace!

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!

Our Trip to IU

Sunday we traveled to Indianapolis to see a Pediatric Stroke Specialist - Dr. Golomb - for an appointment on Monday morning.

The Trip - It was stressful.  I'm not gonna lie.  We left by 10am Sunday - actually 9:58am and the goal was 10am - I was feeling pretty awesome about that.  We drove to Kansas City for our flight because it was HALF the price of flying from Des Moines.  We chose to fly instead of drive the 8 hour (before stops) trip.  Possibly the worst idea ever.  So, we drove 3 hours to Kansas City and were an hour late getting to the airport.  Hello, panic attack.  We got in the wrong line.  KC does it a little different and you get in line for security at your airlines gate basically.  We got in the Delta line but turns out it was the Delta Security Line, not the Delta Check Your Bags and Print Your Boarding Passes Line.  We got out of line, checked the bag, printed boarding passes and got back in the Delta Security Line.  We got through security, which is a feat in-and-of itself with a 19 month old who has a diaper bag, a car seat, and a stroller, in addition to our carry-ons and my purse.  We arrived at our gate and boarded within 10 minutes.  Not much time to spare - definitely not how I like things.  My motto is "If you're not early, you're late."  Ben thought the take-offs were hilarious and had a couple outbursts on the first flight - I think just pain from his ears.  We really couldn't have asked for more from him.  Then we had a layover in Minneapolis/St. Paul.  That was nice to have a little down time and let Ben scoot around for awhile.  We gave him diphenhydramine (Benadryl) shortly before we boarded our second flight and he slept the whole way.  Thank you, Jesus...and Benadryl.  We arrived in Indianapolis around 10pm and got our rental car and drove to our hotel (about 30 minutes away).  It was a LONG day.

We took selfies while we were waiting for our flight out of 

Minneapolis/St. Paul and I even got some great kisses.

Indian War Call

We realized once we got to the hotel that we forgot the cell phone charger in the car at K.C. airport.  I have officially become my mother and woke up at 6am worrying about this and unable to go back to sleep.  I got up and went to Meijer (or is it Meijer's?) in my pajamas...which had Peanut Butter Ritz Bits mush all over them from Ben the night before.  And I didn't brush my teeth.  Luckily there weren't too many people there and the ones who were didn't seem to care.  P.S. -  I much prefer this place over Wal-Mart.  It's like a mix of Wal-Mart and Target and T.J. Maxx.  We need these in Iowa.

Our appointment wasn't until 10am so we had plenty of time to hit up Cracker Barrel for breakfast and drive through town, including a Now-We-Can-Say-We've-Been-Here trip by Butler University.

The Appointment - It went well!  Dr. Golomb was very pleased with Ben's development, especially in spite of his Infantile Spasms diagnosis.  I can't convey how serious Infantile Spasms can be.  If untreated they WILL cause mental retardation.  While Ben is developmentally delayed, my mommy instincts tell me he'll achieve whatever he wants in life, though it will undoubtedly be harder for him than most other people.  She again reassured us that he will walk, citing the statistic that kids who sit up independently by 17 months of age will be able to walk.  It's so easy to forget how devastating this stroke COULD have been.  He could never walk, or communicate.  He might not have sat up on his own until now...or even later.  We are so thankful it's not worse.

So, back to the appointment.  We don't really know anything new yet.  They took 8 vials of blood to test for all kinds of stuff I don't even know about.  A little background: Ben had a right sided, middle cerebral stroke. When they did his MRI they also found a blockage in his left carotid artery.  Because of the two abnormalities, Dr. Golomb is guessing he has some sort of genetic-type mutation that caused the blockages.  She isn't immediately worried about any future events.  She described Ben's stroke as a "perfect storm" of events.  He has/had several risk factors.  1. He's a boy and for every 100 girls that have perinatal strokes, around 170 boys have them.  2. He's a twin, also increases his risk.  3. He's a first born, also increases risk.  4. Around the time of birth, mothers and babies clot faster.  This is true for everyone and is a survival mechanism so we don't all bleed out and die during child birth.  We'll see what comes back from his blood tests to find out what other risks factors he has.

She wants to see him again in two months so we are scheduled for an appointment July 22nd - our 7 year wedding anniversary.

Back Home - It was an equally long trip back home with a brief layover in Detroit and my stomach not feeling well for the entire drive back to Iowa.

    Showing off his bandages from his blood draws - he did great and had an awesome phlebotomist.

Thank you all for your prayers and sweet comments and well-wishes.  We truly appreciate each and every one of them!

 

Good Report

Ben had a follow up with the neurologist in Iowa City today and it went well.  He hasn't had any seizures since September 26th. 

We learned he has around a 50% chance of developing Lenox-Gastaut Syndrome (LGS).  LGS is a rare and severe form of childhood-onset epilepsy that is characterized by frequent seizures, multiple seizure types, a resistance to medication and/or therapies, behavior disturbances, and moderate to severe cognitive dysfunction.  There was also a 50% chance that his infantile spasms would return once we stopped the steroids and that didn't happen so we are hopeful we won't develop any further problems and especially not LGS. 

At this point everything is going well and we don't have to follow up in Iowa City any more unless he develops any other problems or has a new type of seizure.

Dr. Joshi is referring him to a pediatric stroke specialist in Indianapolis so we will hopefully be traveling there in the next few months.  We want to make sure we aren't missing anything and don't need to be doing anything further for Ben to prevent another stroke.  I should probably back up just a little and explain that Ben's stroke is unexplained.  It is possible it occurred before he was born and could possibly have been the result of a small piece of placenta breaking off and traveling through the umbilical cord to his brain.  But, that is just one theory and we really have no idea.  There is also the possibility that he could have some type of clotting disorder though the hematologist that saw him in the NICU didn't think that was the case.  Dr. Joshi isn't sure he shouldn't be on a daily aspirin regimen to help thin his blood and prevent further issues.  So all this uncertainty is why we are seeing someone who specializes in pediatric stroke.  Hopefully it will provide more answers.

    Ben at lunch before his appointment.  He looks pretty darn perfect to me!

I Tried

Ben had an appointment with the Pediatric Neurologist today. Everything went well and his exam was normal. The doctor does want us to see another Pediatric Neurologist that specializes in stroke. There aren't any here in Des Moines so we will be traveling somewhere else, likely St. Louis or Denver. He would like to find out more information about why the stroke happened. At this point everything remains the same and there is no treatment. That being said, there also are no signs of the stroke affecting him at this point either. Of course he could still develop complications months or years down the road.

So, since we were actually going out of the house we decided to dress up a little today. Usually we just wear sleep and play outfits at home since they are easier to change diapers in. However, the twins got LOTS of adorable clothes from so many people that love them so every time we go somewhere we try to wear something nice since they'll grow out of them soon!

BUT...Ainsley and Benson were NOT feeling the photo shoot today. I took about 30 pictures and this is what they ALL looked like:

And this:

The only ones where they weren't crying had these:

I tried to get good pictures to share with you all! These will just have to do - haha!

Oh, and yes, those are fur boots Ainsley is wearing - thanks Ashley!