Friday, December 30, 2011

ABM Therapy

We are adding a new member to Team  Luke!  I took Luke to meet a new therapist named Chad Estes with Evolution Through Movement (  He is trained in the Anat Baniel Method (ABM).  In a very, very simple nutshell, this kind of therapy teaches children movement that helps their brain create new connections.  I've been reading this book, The Brain that Changes Itself.  It basically deals with the plasticity of the brain and the ability of the brain to create different pathways to overcome damage.  I know that the damage to Luke's brain can't be undone - ever.  But I do believe that his brain is working hard to make different connections and overcoming the damage to his brain.  Hopefully working with Chad will help Luke make those important connections and fire up parts of his brain to take over different things that the damaged parts can't. 

I first heard about this therapy from a friend I've made because of this blog - Susan.  Her son has macrocephaly and PMG also and he has been doing this therapy for awhile now.  She loves it and it's been helping her little guy.  I read about it awhile ago but didn't think it was available in this area. 

Soooo we're going to give this ABM stuff a shot.  It's a very intensive therapy that at this point is not covered by insurance.  We're not sure what to expect but we feel like it's one more thing we can try to make sure we give Luke the best chance possible.  We're starting a little under the recommended therapies.  We'll be going 2 days per month with 2 therapies each day.  From what I understand - 5 therapies is the lowest recommended number.  Due to my work schedule and concerns over Luke's tolerance we're starting out slow...

I wasn't sure what to expect when we met with Chad.  And honestly both Luke and I were a little under the weather so I wasn't expecting much.  But it went well.  Chad was very calm with Luke.  It looked a lot like he was just massaging Luke and moving his body parts around.  While he was doing it, though, he was quietly commentating on everything he was doing to Luke.  And he was speaking to Luke not me.  He encouraged me to give him snacks/drinks while he was working with him so he was comfortable and happy.  While it looked very relaxed and calming - the things he was doing were very deliberate.  It's hard to explain but I was impressed. 

Here's a little bit of an explanation.  There's a link to the website if you're interested in reading a little bit more about it.  And just to clarify - we are NOT ending any part of our traditional therapy.  I LOVE our therapists and credit them with Luke's amazing progress so far.  We are looking now - and always - for anything at all to further Luke's progress.  I don't know if we're going to love this or not but we're going to go ahead and give it a shot! 

With the ABM the focus is very different. Rather than try to fix the problem directly by focusing on the limitations, the focus is shifted to where the solutions actually lie – with the brain. The ABM focuses on helping the brain of the brain injured child do its job better. It helps the brain right itself and regain its ability to powerfully and consistently create new neural patterns that bring about successful solutions. We apply gentle techniques that directly communicate with the nervous system of the child through, primarily, movement, enhanced awareness and non-verbal kinesthetic experiences. With the ABM, the brain of the child with cerebral palsy or any other brain injury regains its ability to function in a healthy way. That is when the brain damaged child can begin doing what healthy children do.

That's it for now!!  I'll update you after our first FULL intensive session!

Wednesday, December 28, 2011

We love you, Miss Erin!

We had a wonderful, uneventful holiday.  We enjoyed time with both of our families and had lots of down time.  Luke has been continuing to grow by leaps and bounds!!  He's starting to use his fork and spoon successfully.  He's drinking from an OPEN cup pretty well with limited spillage.  He's spitting out  more and more words everyday!  He is a little monkey climbing up on everything and creating danger everywhere he can!!  We couldn't be more thrilled. 
Look at this fork action!!!  And yes, he's also ready
to pick up a handful with his hands, too, but I'll
take what I can get!!

He wasn't a huge fan of Christmas with all the noise and excitement.  He's a pretty low-key kinda guy!  He would've been much happier if we let him climb up and down the stairs everywhere we were instead of forcing him to open his brand new, fun toys.  I know, we are awful parents. His presents largely centered around OT/PT/Speech but I think they were fun enough that he didn't really notice!  He did get a really cool dog from Santa Daddy!

I do have some sad news to share regarding Luke.  As I've said before - we've been blessed with fantastic therapists.  His OT and PT have been with us since he was two weeks old-regular, solid, dependable.  I have often talked to them about how worried I was to lose them when he turns 3 and is not able to be in the First Steps program anymore.  Well, sadly, our OT is moving on to help other children at a school in the area.  She will be working mostly with autistic children - our loss is definitely their gain.  I am truly devastated which might seem silly but I am.  Erin is so sweet and patient with him at all times and with me.  She answers all of our questions patiently and has helped Luke progress in ways Dan and I never would have been able to do on our own.  She is very sweet with Ben and always takes time with him at every session to listen to his stories, let him play with her toys and allow him to climb all over her for a little while.  We will get a new OT - hopefully quickly - but there is no possible way to replace Erin.  So while we wish her all the best - we will miss her more than she can imagine. 

We will miss you, Miss Erin!!
The new year will quickly be upon us.  We've had a lot of ups and downs this year - but mostly ups.  We hope that 2012 will bring lots more ups for Luke and our family. We have some exciting things (we hope) in store for Luke.  We are looking into a different kind of therapy that specializes in people with brain injuries/abnormalities.  We meet with the only person in St. Louis who offers that therapy tomorrow and will keep you posted on what that will look like when we find out more.  We are also hoping to get Luke signed up for Equine Assisted Therapy in the spring if there are times available that work for our crazy schedule.  We are going into 2012 hoping to continue to not only do our best for Luke but do all that we can to ensure that he reaches his best potential! 

We hope that your families had a wonderful Christmas and celebrate a safe, relaxing and uneventful New Year. 
Playing on my new trampoline.  Luke's Grandma Beth takes him to a gymnastics class once a week offered by PT's from the Cerebral Palsy clinic at Children's.  It took him a little bit to warm up to the class.  He now really seems to enjoy it and she discovered he likes to bounce on the trampoline. 

Annndddd....let me try to climb off of the couch this way!  He has been caught several times by the back of his pants as he tries to launch himself off the side of back!! 

Super Ben and Super Luke gearing up for a whole new year of amazing everyone!!

Happiest of New Years to everyone!!!

Monday, December 12, 2011


Sooo many exciting things going on with Luke these days!  First, as you can tell by the title of the post - we have MAMA down pat!  He's been saying mama for awhile but not necessarily in reference to me.  NOW I AM MAMA!!!  It's so exciting! 

It's especially exciting because I really feel like his language is taking off right now.  He has lots of words now...mama (!!!), daddy, ball, up, down, all done, more, outside, apple, elbow, duck and a few more!  A lot of his words he tends to say the beginning of the word (duh for duck, sss for stomp, smoothie and spoon) but he's consistent.  He will sometimes get a word and then lose it but our speech therapist feels like he's gaining more words than he's losing. 

He also seems to really be understanding language and making lots of connections.  Saturday the most exciting thing happened!! (Now, prepare yourself, I might be a little more excited about this than you will be - but it was really, really exciting to me!!)  Dan left to go to the store and I was working in the kitchen.  Luke was playing with his toys in the kitchen.  All of the sudden, he went over to the chair where his coat was and brought it to me.  He was shoving it at me saying 'Daddy.  Outside.'  I tried to explain that Daddy was gone, but I went ahead and put his coat on him.  He walked over to the garage door and stood there saying 'Daddy.  Outside.'  (Kind of pitiful, really....)  It was SO exciting to us because he knew he needed his coat to go outside, he knew where to get it and to bring it to me, he was able to SPEAK to communicate what he wanted AND he knew to go to the right door!!! 

He's also developing quite the attitude!!  When he gets mad at us, he blows raspberries at us.  Now he's squatting down with his hands on his knees screaming at us when he gets mad.  It is great to see him developing all the normal toddler craziness!!!

Ok, the rest of this we'll call the 'Pictures episode'. I have pictures from when was casted for his new feet orthotics. I also wanted to post some pictures of him working with his OT, Erin, because I haven't yet. And of course some random recent pictures:)! Enjoy!

This is part of getting 'casted'.  They put bandages around his legs and dampen them.  They only have to dry for a few minutes and then they cut them off. 

The one on the left is for his right foot - his AFO.  This one goes to about the middle of his leg.  It will control the snapping of the right leg.  The one on the right is his SMO. This is what he was wearing before. 

Sporting his orthotics for pajama day at school!!  He seems really comfortable in them - I really wish this was something that they had that adults could try on.  They don't look comfortable AT ALL but he doesn't seem bothered by them.

Playing with Miss Erin!  He's working on his fine motor skills - strengthening his hands and using his pincer

Do you want more, Luke?? 

Miss Erin has to get very creative to keep Luke's attention!!  He wanted to play on his zebra so she adjusted therapy so he could play on his zebra.  She was working on his hand/eye coordination. 

My sad attempt to get a picture with my boys....this is Luke's 'mad' face I wrote about!!  I love it!!

This is one of my favorite pics of Luke.  It pretty much sums up his personality!  He makes this face at us often right to the dripping drool!!