So a friend with a new baby asked me yesterday how much the twins ate when they were 2 months old...uhh...I have no idea! It's possible I blocked the madness of the first six months with twins out of my head. But wait! I have a blog! And let me say I'm SO thankful for it! Guess what?! They ate 100ml every 3 hours during the day and were sleeping about 6.5 hours at a time. So after I looked up this tidbit really quick I browsed a few more posts. And I came across this one. Ben's seizures. Wow. That took me back. Took my breath away. Made me cry. I found it so interesting how I said in that post multiple times, "I'm putting this in here so I'll remember when we come out of this on the other side." And you know what?! We did! It's been 948 days since Ben's last seizure. It's like a distant memory now. Or a dream even. We have an amazing, bright, rambunctious 3.5 year old who pretty much has the potty-training thing down pat, LOVES cars, and begs to play outside. Seriously...PRAISE GOD! He is good!
So I'm feeling inspired to blog more. Not because our lives are exciting or even entertaining. Not for money certainly - I've made $20.32 on my blog since I started it on October 9, 2009. But because it's my baby book. It's our family picture album. It's how I remember our lives. It holds my world.
First off, what an amazing experience that our family has been provided. While this is truly about Ben and his future successes, we'd be remiss if we didn't take pause and thank ALL of the people involved in this effort. A number of contributions from countless people have made this trip a reality and not the pipe-dream that I thought it would be when we first contemplated starting this journey. It's a lot of fun to be part of a success story and we hope that your contribution to the process, whether it has been monetarily, spiritually, emotionally (or something else that I've not placed here) gives you a sense of accomplishment. Don't take our word for it, Ben's pictures are a testament to his own hard work. Many of you know Ben, and some of you know him well. You know where he has been; through this blog over the last three weeks, you've seen where he has come. It is our family's hope that you continue to follow him in the future. Please, take a moment and appreciate your role in the process. We deeply and sincerely thank you for this opportunity.
Today was an odd day, as a number of administrative items needed to be addressed during our session today. Before we got down to the paperwork, however, Ben took a moment to thank Ms. Jane for all of her hard work. Honestly, Ms. Jane is an extraordinary individual who truly has a passion for the work she does. Her focus is intense, she has a phone, but we never see it. She doesn't where a watch. She doesn't step out to go to the bathroom. It's really cool to recognize just how focused she is on the task at hand. Here, Ben was saying thank you with a small token of appreciation.
From there, the business of the day was to work on bilateral movements. To accomplish this, Ben did a number of activities that involved the use of two hands. For instance, he "read" books, played with a few large toys, and snapped together some toy "things." I'm not sure what to call them, but I've included an image below. Assign these things any name you'd like! (Interactive blog, how about that!)
The other cool part of today was that Ben got to show off for Grandma and Grandpa Yenger. We took them to therapy with us and they spent a few hours watching the work that Ben has been going through on a daily basis for the last three weeks. Best of all, Ben got Grandma on a swing in the gym and had some fun swinging with her!
Our gym time pretty well completed our therapy session. From the gym, we went back to the room and did paperwork, signed off on materials... yada, yada, yada....
We hopped in the car around 11:30 and took off for the great white North. During our drive, Ben and I did a bit of talking, and we talked about the importance of using our left hand. He demonstrated that he understood by using it to manipulate an old iPod touch,
Perhaps the coolest part of the day however was supper time at B dubs. In the face of a long car ride and a 45 minute nap, I asked Ben to work with his left hand at supper. I brought along a fork commensurate to the task and after one brief melt down, he was doing this:
Look ma, pinching with my left hand!!!
So y'all know, the fork was intended for his left hand. The idea here is that if you use something bigger, it will make it easier to grasp. Ben decided to go big and actually maintain a grip on a Splenda packet for quite some time! Just a little bit of pride talking in our boy!
Demonstrating fantastic range of motion!
(And still holding the Splenda.)
Video evidence that he was a total boss at supper tonight with his left hand.
Bedtime was fast approaching so we did a bit of casted homework, then put on our supination splint for the night. Here Ben is in his splint...
It was time for bed around 9:30ish in preparation for our return home tomorrow! Can't wait to see Reanna and Ainsley.
Again, we want to thank all of those involved in Ben's story. Mom and Dad just have to manage and maintain the therapy, but it is all of you, in your collective capacity, that have ushered Ben into a new way of living. A more productive way of living. Thank you. We love you and we thank you for loving our son.
Today was an exciting day, as we started doing things to wind down our
trip to Birmingham. First, Ben got to take his cast off today! (It's
not permanent, when we get home, the cast goes back on for 45 minutes a
day, every day, for a very long time. That's a good thing, even if Ben
would have you believe otherwise. In order for movements with his left
hand to become autonomic, he'll need a tremendous amount of
repetition.)
A preview...
Second, we got to meet Dr. Taub! Dr. Taub created the CI
program, and at what must be 75 years old, continues to write grants for
further research in the field of CI. For those of you so inclined to
learn more, click here.
Lastly, we started our final evaluations for the 22 item questionnaire
that was mentioned yesterday. In all it was an exciting day!
The first half of therapy really focused on fine motor development. As Ms. Jane indicated, once the cast comes off - and especially at Ben's age - there will be a hard turn back toward what has always been comfortable, you know, using his right hand for everything. Given that, fine motor skills were our prerogative early in the session. Ben worked especially hard to use his "tripod" grasp.
Working on fine motor skills...
iPads are pretty ridiculous. Seriously, who spells a word like that!? Moreover, they aren't particularly environmentally useful and they generally seem to feed our collective tendency to do many things at a superficial level. Enough ranting... Begrudgingly, I perhaps see why Ben enjoys it. He did an excellent job of almost "pointing" with his index and ring finger while goofing around with one!
Ms. Jane, wise as ever, cautioned against using the iPad too much and suggested that it be considered more of a "reward" for other more meaningful work. Her concern largely stemmed from the fact that the iPad world is one of 2D and, as it turns out, we live in a 3D world. Too much screen time, especially for him, can cause depth perception issues.
But I'll give credit where it's due, and I must say that Ben seemed quite enthralled by the iPad.
In exchange for the cast coming off, Ben now has the opportunity to where a supinator splint to bed at night. He wears this on his left hand and its purpose is to help elongate the supinating muscles in his bicep and forearm. These muscles, over time, will help Ben supinate with greater ease. (It won't be easy, but rather easier. Supination is extremely difficult for those affected by a stroke.) Not sure what supination is? See below!
The process of getting fitted was surprisingly loud and whiny; this was all the more surprising given that he had apparently done so well when getting fitted for his cast.
We hit Ol' Guin Donalds - McDonalds for those of you not familiar with Benspeak - and ate lunch. Then, we transitioned to an afternoon nap that was followed up with a bit of homework. (Puddy pulls, weight bearing exercises on his left side, playing with cars, I mean the whole 9 yards...) These tasks where a bit harder today as Ben needed additional prompting to keep his right hand down and away.
Our final night in Birmingham was capped with a visit to Dreamland BBQ. It was fantastic, I mean really, the ribs were delicious.
Ribs... Yum...
Our final excursion led us to Steel City Pops, an establishment that Reanna has previously discussed, I won't bore you too much, but suffice it to say that someone more entrepreneurial than I is currently missing an opportunity in Iowa...
Anywho, our last visit is tomorrow! Woot Woot! Y'all have a good night!
Today was another good day at therapy! We got started, pretty much, right at 8. We spent the first part of our morning working on a variety of hand manipulations, doing key grasps, tripod grabs, and occasionally working on our pincer grasp. Ben is really making strides with the key and tripod grasps and is developing a significant amount of strength all along the way. When he hits with his left hand, it actually hurts! (Should he be hitting??? Yeah, yeah... but frankly people, I don't give a damn.) I'm so happy to see that Ben is developing an amount of strength sufficient to demonstrate force; its been an amazing development!
Some excellent "tripod" grasping...
We were lucky enough to get to play with M again, playing with a parachute. M was a good sport and both he and Ben did a great job of sharing and demonstrating some awesome age-appropriate behaviors. We also met another little boy, B. He was younger than Ben, but was all too happy to partake in the parachute festivities. Like yesterday, we were too busy in the moment to take any pictures, but rest assured that all involved had a great time!
We also did yogurt again today. This is one hellacious mess, but Ben gets a chance to put both his gross motor, as well as fine motor skills to good use! Take a look!
We also have some sweet video evidence... if it loads properly...
Tonight we ate pasta at Guisseppe's Cafe in Homewood and we had a great time. Tomorrow night, we are headed to Steel City Pops as part of our last night in Alabama.
For those of you who watch the video and wonder if there is progress, consider the following...
Reanna and I were are given a questionnaire regarding the usage of Ben's left arm. Reanna reported, prior to therapy, on 22 questions. The questionnaire was Lickert in style. Tasks that Ben could accomplish independently are scored at a minimum of 3 - he can do it, but very slowly and with great difficulty - up to a 5 (which would indicate that he can do tasks just as well as he does with his dominant hand). Scores of 0.5-2.5 indicated varying degrees of dependence that Ben placed on an adult. Zeros were those items that remained unattempted, despite adult assistance.
Reanna reported at the outset of therapy that Ben would not attempt 21 of 22 tasks when offered assistance - aka - a zero.
As of yesterday, upon completion of therapy, I was responsible for the assessment. Despite issues of interrater reliability, which I expect to get a pass on, Ben had attempted all 22 activities, scoring at least a 1.5 in all areas. In 13 of 22 categories, he scored a 3 or better, indicating that on more than half of the activities, Ben acted with varying degrees of independence. Truly impressive!
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!
The time is currently 8:44 pm. (Documentation of when I started this endeavor. Bear in mind that the quality of this blog will take a significant hit this week. Please return one week from today to see the writing that you have come to know and love.)
Most of the family was together this weekend, which was awesome. With the exception of Ainsley, who was hanging out with grandma Barb, we all hung out in Birmingham and took in the sites. We had a chance to go to the top of Red Mountain, to Vulcan Park, and take a look at the city from an awesome vantage point.
It was great to see Reanna, though she had to fly back amidst snowmageddon 2015. It really was a disaster. In fact had it not been for the neighbors, on multiple occasions, I'm confident that Reanna would not have made it to work today. We really do love our neighbors and when crap gets real hairy, you certainly find out a lot about who has your back. Guys, we can't thank you enough. (New to the neighborhood this summer will be a kegger, thrown by the Yenger family in honor of the Nelsons, Lynches, and Briggs' - these people are amazing.) To top it all off, the smoke alarms started going off at midnight at our house... Seriously... WT... well, y'all get it...
Therapy... the point of the post...
Ben began his third and final week of CI therapy with dad this morning. Dad had a lot of catching up to do, mom was a pro at this business and dad walked in as an amateur. That said, Ben did a great job of settling in and getting right to work! In some ways he picked up right where he left off. He was eating yogurt pretty well!
And he decided that it would be a good idea to bring some art back home to his mother!
It has been fun to watch Ben's progress from a distance via this blog,
but it is an altogether amazing experience to see Ben do this stuff in
person. I was seriously impressed with his strides. This is a kid who wasn't walking at a year ago and had essentially no mobility in his left hand. Today he runs and he is using his left hand to eat yogurt, play with toys, squeeze dye out of a pipet... I mean it really is nuts how far he has been able to come in such a short period of time! While the road ahead remains long, the rearview mirror certainly provides a testament to your success. Bravo, Ben!
In terms of "big stuff" today, it was Ben opening a door on one of his favorite toys at therapy... Check him out!
After therapy we took to Tuscaloosa and saw the University of Alabama. We basically just did a quick out and back. We got a couple of souvenirs (t-shirts, etc...) and got back to Birmingham.
For a night cap, we went to Saw's BBQ, Reanna said that the food was amazing... she was right. We had some amazing beef ribs and macaroni and cheese. Ben ate so much macaroni!
We tried to get to bed earlier tonight. Tomorrow is Tuesday and we are looking for a more laid back day. All this running around on top of an exhausting therapy session gets to a kid! (And an adult!)
So yeah. We've come a long way. We got some great focus first thing this morning then played with our friend, R again. Since it was his last day he got to do activities with his cast off and use both hands - something for Ben to look forward to next week! Ben and I both got big hugs from him before we left today. We feel so blessed to have meet him and his mama!
We are playing and doing homework right now while we wait for Daddy's flight to get in...which isn't until almost 9pm...hurry up time!
Today was a FUN day at therapy! There is another little boy doing CI therapy at the same time as Ben and they have had lots of fun playing together. They got to see another therapy dog together today. They really enjoy playing together and seem to prompt each other to do better. It doesn't seem like competition though. They are both twins and their twin sisters don't have the same difficulties they face so I think they are enjoying sharing this unique bond.
I'm so sad I didn't get a good picture of R (Ben's friend) smiling because he has THE best smile that will brighten anyone's day! They also make a great team because Ben's cast is on his right hand and R's is on his left. This is R's third time doing CI therapy at Children's of Alabama and he has made amazing strides! Tomorrow is his last day since when you do the "refresher course" it's only two weeks. We're sure going to miss him! Oh, and they both have Scooby Doo on their orthotics - they were MEANT to be friends. God definitely brought them together.
After they got to see the therapy dog they finger painted together.
He looks thrilled doesn't he? Haha. He really did enjoy it, he just wasn't excited about mom trying to take a picture. Snack time was next so he was all, "get on with it already." P.S. I had to step out during the finger painting because I was literally about to have an anxiety attack...heart was beating fast...rapid breathing...luckily Miss Jane totally understood. I can handle messes like this is I'm prepared for them but I wasn't mentally prepared I guess. Or something. I don't know. Please tell me I'm not alone and someone else has had a near-anxiety attack related to finger painting.
Ben and I had a pretty chill evening and went to a movie! We saw Strange Magic. It got TERRIBLE reviews but we liked it. It reminded me of Rock of Ages but an animated version and for kids. You could sing along. Ben enjoyed it. There were a couple kind of scary parts but he did really well. And yes, we ate popcorn for supper. Don't forget to vote for me for Mom of the Year.
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.
