Therapy

Many wonder...."how do you do therapy with a baby???"  I will show you in pictures :)  Of course I have been hard working with him at our therapy sessions so I only have a few pictures of some of the exercises we do.  Most all of his therapy is more like Play than exercise.  However, with each type of exercise there is some major technique involved with some form of play to distract him from knowing he is actually exercising.  Most people do not realize they automatically do many of these things with their children but each time 'we' do it we have to consciously make an effort to work a certain muscle group or movement.  Since Noah was born we have been able to use different things we find around our house to use as aids in his therapy.  As he gets bigger we are continuing to search for bigger and stronger equipment to help Noah reach each milestone.  I will now walk you through each of Noah's exercises and let you know what we are actually working on and how it will help him.  We do four different types of therapy with Noah.  Physical Therapy to work his muscles and balance.  Occupational therapy to help him learn skills like holding and rolling.  Vision therapy to help his one working eye be able to focus, follow, and lock onto objects.  Finally, Speech therapy that not only will help with his speech but also this therapist works with his eating and swallowing difficulties.  Currently we only have access to therapists through the Early Intervention Program and they are only allowed to visit once every other week each.  We plan on going through our insurance to seek other therapists once we can financially do so.  The main thing to learn from therapy is that the therapists are there to teach us as the parents so that we can work with Noah daily.  They do work with him while they are there but so far it has only been to teach us what we can do and since they can only come bi-weekly their actual therapy session isn't really working him hard enough.  We have to be really focused and make good notes with each visit so that we can provide Noah with daily sessions.  Every single aspect of his day from lifting him out of his crib in the morning, changing his diapers, feeding him, playing with him, bathing him, ect all have a very specific therapy technique involved.  It is constant and never ending.  We are used to it at this point and honestly do not know differently since Noah is our first born.  To us...this is just how you care for a baby.  We are uncertain to what degree Noah is at but from the little we do know he is severely delayed in all aspects of growth and reaching milestones.  I personally have this massive undertaking of a goal to get Noah sitting straight up 'assisted' by his first birthday, walking and drinking liquids by his second birthday, talking by his third birthday, and being potty trained by five years old.  I tell myself daily to know these are just goals and to not get down if a birthday comes and not the milestone but I have to have something to work towards and this is what I have come up with :)

Tummy Time: This position allows Noah to work his neck, shoulders, and hopefully his forearms.  We also incorporate vision into this by putting different toys in front of him to engage him and make him want to lift his head.  He still is unable to hold his head up but we work on this many times a day.  We roll towels or use different pillows for him to prop up on to get more leverage on his head lifts.  He is finally mastered the head lift but still lacks the steady control to be able to hold his head up.   Now we are working on endurance.

Rolling over: Noah was once a master at rolling from tummy to back.  However, when he was struck with Infantile Spasms he lost his ability to do pretty much everything and we had to start all over with him.  We place him on his tummy, tuck his arms under him at an angle as if he were about to push up on his forearms.  It is in this position we are teaching him to turn one hip backwards, pull one arm outwards, turn his neck to look in a certain way depending on which way we want him to turn, and then trying to get him to flip himself over.  With each step of this process he learns we celebrate it as a new level of him learning how to turn over.  As of 7/30/12 Noah flipped over unassisted without having to have any leverage for his first time since before the spasms.  He has only done it the once but we are on the right track.   

Balance: Noah has severe low tone in his muscles and especially in his core (shoulders, hips, stomach, back).  He cannot sit up at all and flops over in a curve no matter how much we work with him.  This happens to be one of our hardest battles right now.  Not shown is how we use a yoga ball to do all kinds of exercises with him.  We also have to hold him a certain way, burp him a certain way, feed him a certain way, ect to engage this muscle group.  We do many pressure techniques with him to activate these muscles and help him feel them.  A friend of ours purchased a wonderful and amazing body suit for Noah that has helped him tremendously.  It is the SPIO brand compression garment that has really made a difference in Noah's balance and ability to hold his trunk.  We were so blessed to receive this gift as anything to do with medical equipment or devices are a pretty penny.    

Vision Techniques: We long for the day when Noah will be able to look at us in our eyes and make that connection with us.  He is unable to focus on things at the moment.  We are not sure how much sight he has in his right eye but we do know he is seeing something.  It may be shadows, it may be just light, or it may be everything and he just hasn't figured out how to stare at anything yet.  There are many things we use with him to try and catch his attention and get him to focus.  The lightbox is one piece of equipment we use.  It is just a box with a light in it that has different colored screens we use to get him to follow the different colors.  We also were fortunate and blessed to win an refurbished Ipad for Noah through a program called Ipads for Babies We use this Ipad with him a lot and there are SO many applications out there for the blind and vision impaired.  He loves the piano app even though he still doesn't touch the screen himself.  Black and White contrasting pictures are the number one thing that attracts babies attention.  That is why many baby toys are black and white.  You will find many printed black and white pictures all over our home and even hanging in my car for him to stare at while he is laying down, getting his diaper changed, or driving to the store. We try to incorporate sound, touch, and textures to his vision therapy as well.  Our main and ultimate goal is for him to be able to see and watch someone walk across the room who is making almost no sound.  Also, for him to see something he wants and reaches for it and actually makes contact with it.  Seems so simple but it is so very hard.

1st bottle after tube was out

Feeding Techniques: Noah aspirates on thin liquids so we have to add a thickening agent to any fluid we give him.  Baby food is the perfect consistency that we can just open and serve it to him.  One of his doctors has informed us that speaking and chewing are two areas ACC kids really struggle with.  Noah was put on a feeding tube for a couple months.  We celebrated the day we were able to stick a bottle in his mouth for him to eat.  He had lost ALL of his ability to take food orally and it is a daily struggle for us to get anything in him.  We have to count ounces every day.  I say a little prayer every time I make a bottle that goes something like this "Please please please dear Lord let Noah be able to take this bottle and get at the very least 5 ounces in him so that he can grow strong."  He hates the bottle and I don't blame him.  Who would want to suck on something that makes you choke.  Who would want to swallow milk that is almost as thick as maple syrup.  Baby food or blended food on the other hand is a totally different story.  He LOVES it!!!!  He has trouble getting the whole tongue techniques down but we are working on that.  He loves taste and we have recently been told to introduce spices to him to get him to eat more.  The only thing we are restricted to give him is honey and cows milk until he is one years old.  The more he is able to take orally the more he is using his muscles not only in his mouth but throat, neck, and face.  This will only help with speech down the road...at least that is what we were told.  We have to place him in a very specific way to feed him, burp him, and then elevate him afterwards since he suffers from acid reflux disease (Sandifer's Syndrome). His weight has never once been a concern and this along with his hearing are literally the ONLY areas we have never had to worry about or work on.  We would love to just feed him food but we have to really watch his hydration and babies under one years old can only really get the nutrition they need from either breast milk or formula. So we were given a goal of getting 24 ounces of bottle fed formula into him along with two 4 ounce servings of solid food.  We are no where close to that.  On a good day we are getting 20 ounces of formula and 2 ounces of food.  We keep trucking along though.

Not great to use for balance or head control but works his legs and hips

putting small objects in bowls helps him open his fingers and learn how to grasp

putting him in different environments helps him build awareness and create neurons

This is called the 90/90/90 and helps with truck control, head control, and balance.  We do this for vision stuff as well.

Lifting the hips helps take the difficulty out of doing a backwards ab crunch

First time he ever grasped onto something...it was a beautiful day.  He loves beads. 

Here is a silent video of one of Noah's therapy sessions on the Yoga ball.  In this video the therapists were trying to get him to put weight on his legs.  He did not like it very much at all.  Sorry it is sideways.  I recorded it on my phone and had tipped it sideways to capture his whole body on the yoga ball.