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!

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!

High Five - With Lefty!

This video says it all.

So proud of this guy! 

P.S. - We're not supposed to say "lefty" we're supposed to say "left hand" so ignore the title.
Also, please ignore my early morning scariness of no make up and glasses and crazy hair. 

"Daisy"

Guess who said "Daisy" for the first time tonight???

THIS GUY!

We were getting ready to go to bed and he was sitting on Dad's lap and watching Daisy and wanting to get down to play with her and he said it!  Plain as day!

And then I coaxed him into saying it THREE more times! 

He says it more clearly than his sister!

Praise God for this beautiful miracle who we worry about every day but does everything in his own time!

YAY!

Scooter

Ben is an official "scooter" now.  The last few days he has really taken off with the scooting action he does.  He even made it from the living room to the kitchen.  He loves being able to keep up with his sister more and be where the action is. 

I'm going to take just a second to say that it's hard having a child who's different.  I generally try to keep it light and positive but it's hard.  Strangers and people who are just acquaintances ask if the twins are walking and getting into everything and it's getting harder when we say Ben is not.  When he was a little younger you could just smile and say "No, not yet" and they would just think he was a little late to do it but not realize there was a problem.  It was a white lie to avoid telling the story.  Now people wonder why our almost 17 month old son doesn't walk.  Or crawl.  And we have to explain he had a stroke.  And it's hard. 

And it's hard not knowing when he will walk.  Or crawl.  Or IF he'll walk.  My Momma Instincts tell me he will.  When he scoots he uses both legs.  He just does it on his side because he can't use his left arm. 

My Momma Instincts tell me not to worry.  That he'll get there in his own time.  That he'll be happy and healthy.  And that's all this Momma really wants.

So, without further ado, here is our scooter!

Monday, November 7th

Thank you to everyone for all the messages, comments, texts, phone calls and thoughts and prayers. I've said it before but we truly appreciate them so much. We are so thankful for all the amazing and supportive people in our lives.

Our world was turned upside down on Saturday by the news of Ben's stroke. We didn't know what to think. But God has held us up. We are moving forward. We can't worry about what might come. We can only love our son unconditionally.

Ben is having quite a few tests to try to determine the cause of his stroke, however, we may never know what happened or when. He just went down for his second MRI to look at the arteries and veins in his neck and head. He had an echo to look at his heart because there are some heart problems that can lead to blood clots that cause strokes. He will eventually have blood tests to check for any issues that may cause clotting abnormalities. I will also have my OB run tests on my blood because I may have a clotting abnormality which could make it likely that any other babies I carry could also be at risk for stroke.

At this point the doctor's are doing everything they need to do to determine what happened but there is nothing "to do" at this point. As he grows and gets older he will be followed closely developmentally to watch for delays. He will follow up with the neurologist. He'll have his eyes examined. He may see a hematologist. He may need physical therapy if there are motor issues such as tightening of muscles on his left side. Right now though Ben's care doesn't change. We are continuing to work on eating with him and as soon as he gets that down he gets to go home. He has taken a couple full bottles and more partial bottles. He can now attempt to bottle six times per day. He is definitely making progress. He seems much more coordinated with his suck/swallow and he is less messy. We still have no idea when he might get to go home but we are quietly hoping for next week.

Check out those chubby little fingers holding his monkey! He is up to 6lbs 9oz!

Ainsley is doing well at home. Though I shouldn't really say "at home" since she still spends most of her time at the hospital with her brother. She is eating and sleeping well and really only fusses when she gets hungry. We are transitioning her back to breast milk from the Alimentum formula and so far no problems.

Doesn't she look just thrilled to be having her picture taken!

Thank you all again for your continued support!

Friday and Saturday, November 4th and 5th

I'm having a hard time starting this post.

I think I mentioned Ben might be having an MRI. His speech therapist recommended it based on his uncoordinated suck and swallow when she watched him bottle feed. Everyone we encountered thought it was just due to prematurity and being a boy and a twin. All those things can delay feeding. So the doctor went ahead and ordered the MRI basically because "Mom and Dad are getting impatient" and he was willing to do it to rule out anything abnormal and help to make us more at ease.

Friday the MRI was scheduled for 6:45pm. It got pushed back to 7:20pm. They were backed up once he and Jeremy got down there and they didn't get done and back to the room until 9:00pm. At that point the transport nurse told us that the technician who performed the MRI wanted to repeat the MRI with contrast in the morning. At this point I felt like something was wrong since they wanted to do more testing. Of course no one could tell us any more information since there was no doctor to read the results.

Just before 7:00am today the doctor called me at home. He asked if anyone had given me the preliminary results from the MRI and I said no. Jeremy had already left to go to work to proctor the SATs so it was just Ainsley and I at home. He told me that he did see that there was a significant difference between the right and left side of Ben's brain. He said he would have a Pediatric Neurologist come to see Ben and look at the MRI and decide what further test were needed and that they would not be doing the MRI with contrast until the neurologist saw him so that he could determine exactly what tests he wanted.

At this point I talked to Jeremy and filled him in on what was happening and then called my mom who was already planning to come up at 8:00am to go with Ainsley and me to the hospital.

I was sobbing and felt like I could throw up.

I literally fell to my knees on my bedroom floor and prayed for my son.

When I arrived at the hospital the doctor came right down and showed me the MRI. It is very clear that there is a large area on the right side of Ben's brain that has been affected. Somehow and at some point blood flow has stopped to that area. He is optimistic because they were surprised by this finding. Ben hasn't had any symptoms of having anything wrong other than not picking up eating very quickly. He hasn't had any seizures which is how babies with this usually present. He also said that babies that are so young are able to recover well from this, much better than you or I would be able to.

This afternoon the pediatric neurologist came to see us. He defined what has happened as a Perinatal Stroke. It could have happened before he was born or after. He said it looked like it had been at least 5-10 days since it had happened. At this point it is impossible to tell what the long term implications will be. It could result in severe motor disability or cerebral palsy or it could have absolutely no repercussions at all. Over half of all infants that survive neonatal stroke are entirely normal at 12 to 18 months.

We have prayed A LOT today. And one of our prayers has already been answered. We of course prayed for peace during this ordeal. That God would give us serenity to deal with whatever may come and help us to be calm so we can be good parents. At some point today an amazing peace has come over me and I KNOW that everything is going to be alright. Our son is perfect.

13 For you created my inmost being;
you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place,
when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
all the days ordained for me were written in your book
before one of them came to be.
17 How precious to me are your thoughts, God!
How vast is the sum of them!
18 Were I to count them,
they would outnumber the grains of sand—
when I awake, I am still with you.
Psalm 139:13-18