May 31, 2013 – This week’s challenges and victories

I’ve decided that a really great way to structure these posts for those who are trying to keep up with Emily is to put up a weekly challenges and victories post.  It will be great for me too as I will be able to go back and really see our progress in black and white.  Progress if often hard to see when you are crawling along at this snails pace.  I want to end on the victories, of course!  End the posts on an upbeat.


This week’s challenges have been first and foremost, Emily’s head control!  I am going to keep this one here until that glorious day when,  in one week’s post,  its not here anymore! At this point Emily is quite good and keeping her head from falling backward, I really don’t worry about that.  Makes sense, since that was the first thing to come in the head control area.   She is able to look to her left very well and hold it up.  She was not able to look right as well but that is definitely starting too get better as well.  Looking straight is OK.  She holds for a bit and then the head drops unless she is actively looking at something eye level or above.  She can hold it up in a sitting position which I remember way back, was very hard when we first started wearing the DMO.

We are also still seeing a lot of toe pointing which we have been told, is not good for her heel cords as they will shorten over time.

Low core tone and low hand tone are still major issues.   We are still waiting on her DMO gloves which is frustrating as these should help her hand tone and ability to hold heavier things, pull her thumb out more and just get a stronger arm in general.


Major victory this week – repeating sounds back to us!  She has been a babbler since 5 months old but in speech therapy we were looking to get Emily to observe me making a sound and then repeat it back.  She would do a back and forth “conversation” if she was the initiator but not if I chose the sound to start.  She would look at my mouth and move her lips but no sound would come out.  Our ST talked about how many steps are involved there, making the right lip movements, blowing the air and vocalizing the sound.  Last week I got her saying “ohh” back to me!  We practiced that for a few days and then I tried making it more complex.  Last night I got a “oh ba ba oh”!   Huge step toward language because we know she understands our words since she can follow directions (ex. “turn the page”).   So with good receptive language and now the ability to repeat back sounds we want her too on cue, we are really getting close to expressive language.

Another one this week was a very strong effort at rolling over on her rocker board.  She is making good progress on the amount of force she uses to roll from back to tummy when she gets that little bit of rocking first in the rocker board.

This one was a few weeks ago, but she was able to pick up a toy off her tray with both fists in her midline all by herself for the first time.  Working with both hands in the middle is a huge challenge for her.  With the left arm working so much better these days it is happening more.

Hope everyone had a nice week and next Friday I will have the next round of updates!



Meeting Anat Baniel of the Anat Baniel Method at her DC area workshop!

On Saturday, May 18 I had the wonderful opportunity to attend a day workshop given by Anat Baniel, the creator of the Anat Baniel Method of physical therapy (ABM), that we use as part of our recovery therapy for Emily. She is originally from Israel and now has her center in San Rafeal, CA. Her method is considered an alternative type of physical therapy and it’s popularity and use are really growing in the world of cerebral palsy (and probably others disorders but I know less about them). Our local practitioner was there, too! Nice to see her after a long break in going for lessons with Emily. It was a great day and I learned much more about the method than I already knew. Thanks to Steve for staying home with all three kids so I could go!

A session of this method is called a movement lesson because it uses movement to have a “conversation” with the person’s brain to teach it how it how to direct the muscles to work more effectively and efficiently. During the workshop we listened to Anat speak about the Nine Essentials her work is based on and tell stories of her methods effect on different children. We also participated in different movement lessons that make you realize how effective these seemingly simply movements are at changing the way your muscles work! One lesson allowed me to go from fingers barely touching the floor while bent over to palms flat on the floor about a minute later, with NO stretching!! That one floored me.

It was a long day that seemed to fly by. It was wonderful to connect with some other amazing mothers of special needs kids, two of whom are also doing Masgutova Neurostructual Reflex Integration as part of their therapy protocol like us. We had so much in common! So glad I was able to go so that I could gain a deeper understanding of how and why this method will really help Emily in her journey. I am anxious to get Emily to the Center in CA one day to have a week intensive there and see Anat in action with Emily!


Some of the fun new Emily things we are seeing in the past few weeks

Change change and more change!   I have a bunch of topics that I have been meaning to write about and I will get to them soon, now that my lap top is set up again.    BUT, for now I will just report some of the new things Emily is accomplishing.   She has done the rolling over from her tummy to her back plenty of times on her rocker board (so she is rolling down hill a bit) But last week she was able to do it on the trampoline.  She loves going out there on it and playing with the net, and rolling around with help but she actually rolled three times on her own, back to tummy.  That is the one that has been so hard for her.  On the trampoline there was just a little tiny bit of a down hill slant since I was sitting there next to her. That was all she needed to go.  She is getting close to being able to do it on the flat floor.  One she has that under her belt she will have another way to move from place to place.    That leads me to the next accomplishment which is scooting herself across the floor on her back with her heels.  She is strong enough to slide herself down her crawling board on her back by pushing with her heels.  The crawling board is basically an indoor slide that I put at a very low angle.  When she is on the floor she can also do it if I help hold her feet in place.   She can scoot down the crawling board on her tummy too but prefers to be on her back.  Once the head control is much better, I’m guessing the tummy crawling will be easier.

NOW the big one!  She is learning to sign!  Emily’s cognitive abilities have reached the point where she can learn and copy a movement that I show her.  She has been shaking her head “no” for a while although she is just playing with it right now.   Yesterday I showed her the “all done” sign again and she did it back to me several times in a row.  So now I can show her more signs and we can really work on using them to communicate.   We are thrilled!

Emily’s head control and sitting posture continue to improve as she gains more and more strength from wearing her “Super Suit.  And as always, we are reading about 50 books a day with her turing the pages of every single one.   She usually uses her fist to do this but has started opening up her fingers to grab the pages.   She also picked up a toy off her tray with both hands for the first time!  Actually it was both fists but she lifted the toy up off the tray all by herself.  Really learning to use two hands together with really open up the possibilities for her.

Its been really great and so exciting to see her move forward in all these different areas.  This journey is a roller coaster but for a while now we sure have been on an upswing!  And we are truly appreciating every tiny little new thing this beautiful baby does.


Stepping at aquatic therapy

Emily has the stepping reflex intact for sure. At aquatic therapy today her instructor told me she really enjoyed stepping on the tile. She told me it was something we could work on on our own. So tonight in the bath we worked on it and the little girl was stepping her little heart out. With full support and the antigravity help of being in the water it made it really easy for her. We had a ball “walking” from one end of the tub to the other. And,by the way, she absolutely loves her aqua therapy sessions now. All smiles!


Neurology and Physiatrist visit

We went to our visit with the neurologist and physiatrist yesterday as we will do every four months.  We usually start out chatting with her neurologist, but today I pretty much pounced on the physiatrist to exclaim our joy over the gains Emily has made in head control and trunk stregnth in the three months she has been wearing her Dynamic Movement Orthosis.  They were surprised that we got it so quickly and really happy that she is responding so well.  It was so nice to have them look her over in a sitting position instead of laying on the table this time.   Also nice to hear them say “Wow!  Good job Emily!”   From now on, I hope and imagine I will be proudly showing off Emily’s amazing gains at these visits.  Before now, four months would go by and the new things to report where very very minor.   Now, four months seems like a very long time and much will change in that span with Emily’s new gains in muscle tone and strength

 This was the visit where we are now ready to get prescriptions for adaptive equipment.  That is things like a stroller to give her better support, a bigger bath chair, a stander and a gait trainer.  Some of these things can take a very long time to get, so we get the process going now.   The stander will help her gain trunk strength and get her legs used to bearing weight.  If we get the gait trainer that I want, a KidWalk II,  she would be able to start using it pretty soon to learn how to use her legs and eventually down the road, walk.    We also got an order for a Hi-low chair so she has more comfortable supported seating around the house. So we are about to have a house full of equipment!

 It’s a little emotionally hard to have to order these things for her.   But the recent changes we are experiencing with her, and the many wonderful therapies out there allow me to know that they are not going to be needed forever.  They will just help us get her there! 

We also discussed Emily’s hips, as kids with CP can have their hips dislocate over time.  So we also got a baseline x-ray so we can watch and hopefully prevent this from happening.   We did not stay to see the x-ray results as there was no particular concern yet.  It’s just going in her file.  

The neurologist checks in and makes sure there are still no seizures, which we have been told in the past, Emily is at low risk for.  Every child with brain injury is at risk for seizures to develop but the area where Emily’s bleed was usually doesn’t cause seizures to develop.   So far, so good!  I believe the risk is higher while they are little as well.  So if she makes it seizure free until she is about 3, then the risk goes down even more.  

Right now, the neurologist is mainly concerned with monitoring Emily’s vision.  This was the hardest part of the visit for me.   The bleed affected her vision center,  so we have always know there are vision issues but we have been told it was getting much better.  Emily has seemed to us, to be able to see and grab at everything in her field of view.  Now,  with her glasses, seems to see at distances even better.  So when the neurologist was discussing vision impairment and vision therapy it was a little jarring.  Steve reminded me that this is her job right now since we really don’t have any other neurological concerns at the moment.    The neurologist was pointing out how Emily’s eyes have trouble moving, just like the rest of he muscles in her body have trouble due to the bleed.  We discussed that at this point we don’t know if her actual visual images are affected or just her ability to move her eyes.  She needs lots of practice to strengthen her eye muscles.    Her eyes also have more of an obvious back and forth wobble, which normal eyes do, but it should be imperceptible.  She didn’t use the word nystagmus, but I think this is what Emily has.  I, personally, can’t see it most of the time.  Anyway, we discussed having Emily seen by the best doctor for Cortical Vision  Impairment in the area, which is Dr. Christine Roman in Pittsburgh.  She should be able to give us a better picture of how much Cortical VIsion Impairment (CVI) Emily has as opposed to just having trouble with the muscles.    We are trying to turn these trips to Emily’s care providers into mini family vacations, so hopefully we can do a little camping or site seeing when we go see the doc. 

That was about it from this visit.  We just need to add more vision therapy to the daily routine and carry on!


Emmy got glasses!

Emily's new Mira Flex glasses

The last time we took Emily to the ophthalmologist to check on her mild strabismus,  the doc wanted to “just try” those huge metal test glasses on her.   (I don’t wear glasses so I am not familiar with the lingo.)  At the appointment before this we had discovered that she also has significant astigmatism, like her brother.  So, we knew glasses were in her future for that.   The doc said she didn’t want to torture Emily with glasses yet, “but  let’s just see”.   So she put them on and they looked like they weighed about 2 pounds.  Emily looked around and stayed quiet.  No protest.  The doc took them off and Emmy burst into tears!!  I said,  “I think she wants them back!”  So back on they went.  Silence, looking around.  The doc was very surprised and took them off again.  Tears and wailing.  This was an absolute first for the doctor.  She said she has never had a toddler recognize that the glasses help.  They usually just scream to have them off.  There goes Emily blazing a new trail again!  This was both great to see and guilt inducing.  Emily obviously needs the glasses and we probably won’t have to deal with her trying to take them off.  But of course, there’s the mommy guilt for not having them on her sooner.    Now that we have them, it’s a wonderful thing!!  She is doing very well with them and turning her head and body to look at things a ton.


Look Ma, two hands!


Emmy, working on using both hands to play. Emmy has been right hand dominant for so long, we are having such fun seeing lefty really start getting in the game on a regular basis. When something is placed at her midline, she immediately goes at is with both hands. Still a long way to go on the fine motor piece but the tiny millimeter steps forward now feel like they are turning into inches.