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. 

Vacationing with Special Needs: With pictures!

My husband and I were fortunate enough to be able to piggy back onto his sister's family vacation to San Francisco two weeks ago.  This was our first attempt to vacation with Noah and I was full of anxiety up until we had our car packed to the hills with luggage and were on the road heading from Utah to San Francisco California.  So many memories made and a vacation I will never forget.  Each day was packed with adventures and experiences and lessons learned or ideas and questions to Google once I got home :)  I wanted to highlight certain aspects of our trip that I found to be very enlightening and rewarding for us and our sweet Noah.

Road tripping it seems to be a very daunting and long undertaking for any family with a baby but in fact it actually became the PERFECT environment for vision therapy for Noah as well as working on his awareness of his hands and face.  I sat in the back with Noah for the entire trip (my hubby playing our hot chauffeur) with a full bag of toys and gadgets I could use and play with Noah.  He was stuck strapped into his car seat which made it so that he had a very limited environment with very few distractions.  This allowed him to really work hard on the same task or toy for hours really.  Nothing works better for ACC kids than repetition and this offered a wonderful way to make the time fly by as well as allow Noah to work on things.  In the end he learned that he has two hands that can come into mid-line (center of his torso) and he discovered fingers :)  He also learned that there are toys light enough for him to pick up (even for only a second).  What I learned is that I could make many toys out of one bag of stuff and use my imagination to create therapy aids for Noah.  Up to this point he was unable to grasp pretty much anything.  By the time I was done with him he could grasp a few things for more than just a couple seconds.  Rewarding!

This one makes me laugh

attached wrist rattle

rattle free...grasping on his own!

Play-Dough fun

Razbaby teether

My first trick of the trade was to take a wrist rattle, attach a metal bell to it with a safety pin, then once it was attached to Noah's wrist I then slipped the bell inside of this plastic web looking ball toy that cost me $3 to purchase and after about an hour of showing Noah how to use his fingers to get them stuck in the web of the ball I was able to take the wrist rattle off of him and he could use his fingers on their own to grasp the ball.  This sparked many ideas for me and off I went to figure out different ways to stimulate him and get him to figure things out. I then tried to attach this webbed ball into his binkie....um....looked funny and he just didn't get it. I am still trying to work on this one.  I think I am on to something though :)  After the webbed ball stuff I moved onto play-dough.  Did you know that play-dough offers the best "gripping" stuff ever invented.  All I did was mold some play-dough around a few of the toys Noah has never been able to gasp onto and presto!  He was able to grasp them :)  Yay! In addition to the play-dough I had picked up two pacifier looking things.  One was called a Razbaby teether and the other one is called a Tommy Tippie Gummy.  These little gems are perfect for stimulating their oral senses and I would play with them before Noah would eat and it would get his saliva going and stimulated his hunger.  He loves to chew on the handles too.   



After many hours of playing "working" with Noah this was our final outcome.  Mind you this was after a few days and over 20 hours of working with him throughout the vacation but I am SO happy with the results. Please do not mind my dorky baby talk voice as it cannot compete to the cuteness of Noah's adorable coo's and squeals.

keeping warm

soundly sleeping or over stimulation?

San Francisco offered the absolute best climate conditions for all of Noah's symptoms.  It was a cool 65-72 degrees each day which allowed us to keep all of his ice packs and coolers and fans back in the hotel and lessened our heavy packing each day.  We were also able to wrap him up in blankets in his stroller and I was finally able to really use my baby carrier pack that I have not been able to use much because he gets too hot in it.  It was the first time in my entire life that I was thanking God each night and celebrating each day for the cold weather.  All this coolness awakened something in Noah that I cannot describe.  Ever since he has been a totally different baby.  More engaged and interactive.  I love it.  It may have been all the stimulation of the big city as well.  There were so many sights and sounds and smells (oh the smells good/bad).  Noah was perfect on the whole trip...even walking across the Golden Gate Bridge with not even a single fuss and man was it cold on that bridge. Along with the bridge San Francisco offered us many free or inexpensive adventures that were much appreciated on our very tight budget.  We got to meet the "bush man" and the "silver man".  We got to taste all the fresh seafood from the local street vendors (which happen to be really tasty and not gross at all).  We walked the piers and saw all the funny sea lions basking in the two minutes of sun that came each day.  Noah got to taste a ginormous peach that we bought from a fruit stand that was literally the size of a softball.  All the trolley and bus rides were hard to carry his stroller on however with as many people as we had in our group it took us seconds to hand off each bag, collapse the stroller, tuck Noah into my carrier pack, and load onto the vehicles.  He enjoyed these rides as they lulled him to sleep and we got to see all the fun sights of the city.

can we count this as his first time touching the beach?

The Beach...oh the beach.  Northern California beaches are not warm...at all!  We expected this but it did not provide the best situation for Noah's first beach experience.  Once again on the road we decided to take a small detour and go see Santa Cruise to basically bring back some of my childhood memories.  It took us awhile to find parking, then to get Noah all situated for the long walk to the beach, and then to unload all of the many things you need for a baby to go to the beach with.  It took us ten minutes of walking to get there, five minutes of tripping in the sand to find an open spot, two minutes to unload all the stuff, one second of Noah's foot touching the sand....and then WHAM!!!  One force of wind came through at the exact same time Noah filled his diaper and the combination of the sand in his eyes along with whatever was waiting to surprise us in his diaper and we were in for a full fledged scream-a-thon.  It was NOT the first beach experience we had hoped for.  After trying to settle him down and not being able to we had to pack everything up and head back for the car.  So long beach....so long Santa Cruise waves and watching the rides on the pier....so long childhood memory remake.

Beach trip failure

still not happy in the car

 

Aquariums are wonderful....enough said!  Such a calm environment for us as parents and a perfect place for strollers.  You can go anywhere in these places with strollers and Noah liked all the sounds of kids laughing and we are pretty sure he liked the jelly fish rooms with their neon colors and soothing background music. 







At the end of our vacation and the many many hours driving and sight seeing we got home and just vegged out on the couch and all of us fell into a very deep slumber.  It is such a perfect feeling knowing you just experienced a grand adventure and made many memories and reached many new milestones.

We were ALL exhausted!!!!

This is what I wish I was still doing.  Even though it was cold and I was wearing a hoodie and the hotel could be compared to the Bates Motel...it was still on the beach and the sun sets were gorgeous!

   

Hypotonia aka Floppy Baby Syndrome

Noah, like many babies with Agenesis of the Corpus Collasum or Sandifer's or Septo Optic Dysplasia, has what is called Hypotonia aka Floppy Baby Syndrome.  Like this picture above you will see that these babies are unable (at the time being) hold their heads up or use their muscles because basically their muscles are just too weak.  If you go to here it will go into great detail about what hypotonia is or does or makes things hard to do.  I don't want to bore you with a large cut and paste post so I am going to leave the detail up to wikipedia :)

Noah struggles in this area a lot.  When he was first born and nobody was the wiser about his conditions I remember the lactation specialist saying how strong Noah's neck was because he was already trying to lift his head at one day old.  I was pretty dang proud that day. That same head lift is about where Noah is still at 7 months later.  Well...it is a bit stronger but still unable to lift up fully and stay that way.  His shoulders slouch forward and he can't sit up straight right now either.

These are all things we are working hard on and devote pretty much all of his therapy time on right now.  He will get there just on his own Noah time and not according to any baby milestone book timeline.  Speaking of which, throw the baby books out now if you haven't done so already.  They will only make you feel sad when you read that your child should have done this or that and in reality they are months behind in that area.  It just saves a lot of grief by tossing them aside and focusing that energy on the therapy for your child :)

Like I said, as of today, Noah is 7 months old and so far he is doing really well considering.  He can sit in a bumbo chair for about 20 minutes as long as I am there to keep my hand behind is head just in case his head decides to snap backwards.  He lifts and sags then lifts again.  This is like neck push-ups in a sense and are really strengthening his head control. We also do as much tummy time as possible bringing his arms underneath him and his hands together so that he is perched on his forearms and has to lift his head.  He hates this one but it is the best one for him.  The yoga ball is the best tool I have found.  Just by putting a blanket on the yoga ball (kind of deflated so it is not rock hard) and then I put Noah on his belly and while holding him securely we move front to back, side to side and Noah's muscles naturally activate to keep balance.  It is a hard workout for him but he is getting better at it weekly.

I am not sure how or when he will be able to grab a foot or sit in a chair or push up on his hands but I know it will come eventually.  He is getting big and my next worry is moving him to a toddler car seat because he still can't sit up so how am I going to take him to a store if he can't sit in a shopping cart?  I guess we will get to that point when the time comes.  

For now I get to have and hold and cuddle my baby for hours on end because he just has this natural physique that loves to curl into my arms and shoulders and snuggle in :) 

I heart snuggles!

Infantile Spasm Disorder: worse than just a seizure

***update 4/23/13 Infantile Spasms Website  Here

From the time Noah was born until he was around three months old I witnessed three seizures.  Each time I was holding him and each time my heart stopped.  They were small with the longest lasting just over one minute and was the horrible night the NG Tube was put into place.  Each time this happened I would call his neurologist and also his pediatrician.  However, seizures are common with the diagnosis of Agenesis of the Corpus Callosum (ACC) and they were short and pretty insignificant.  His head would go back, his eyes would roll back, his arms would shake a little and then it would stop.  We were told to keep an eye on it but to expect this as one of the symptoms of his ACC.

On April 17, 2012 we started to notice something different.  It looked like a seizure but he was no longer shaking like he had previously.  His head would go back, his eyes would roll back, but now he was starting to do a chewing motion with his mouth and then he would stretch his lips.  His one arm would go up and down a little bit and some times he would arch his back a little bit.  At first it happened one time, then as each day would pass it would go longer and more frequent.

The neurologist told us to give him this emergency drug called Diastat (Valium that goes into the rectum) if he has a seizure lasting longer than five minutes.  Well, that day came much too quickly and I was crying as I had to administer this drug into my baby's bum the first time.  Then the next day there was another five minute one but I was told not to use the drug more than twice a week.

Long story short, five weeks worth of these seizure looking episodes, two visits to the ER, two different trials on anti-seizures medications....and nothing was working.  They got as long as 12 minutes and up to about 8 times a day.  I knew there was something more to it and I was upset that nobody was asking to do another MRI or an EEG.  So what does any parent do in times like this (or I should say SHOULD do).  Put your foot down!  Demand some tests!  Call every single day and leave a message with the neurologist to be seen!  That is what I did and finally it worked.

Now, my husband and I had taken a video of one of his episodes with our phones.  We had showed the ER staff (all 20 of them), his pediatrician, his physical therapist, his occupational therapist, and his vision therapist.  His endocrinologist even saw a live episode and NONE... I repeat...NONE of them had anything to say about it or that it looked out of the normal.  (this is when I decided that doctors do not know much and you have to be your own child's doctor and do your own research). Our baby was pretty much lethargic every day, totally regressing in all aspects of development, and couldn't even smile anymore.  We were heartbroken for the zillionth time.

Finally the day came where we were finally able to meet face to face with Noah's neurologist who we love but who is also extremely busy.  We showed her the video and in a matter of two seconds she said "that is not seizures that is Infantile Spasms".  Two seconds it took. That was all.  Even after I had explained to her over the phone three times as well has her nurse and message person in very detailed explanation what his episodes looked like.  (Lesson:  take a video if you can and email it to them for viewing rather than telling them over the phone what you are witnessing). 

At first the term Infantile Spasms sounds pretty harmless.  Wrong!  So very very wrong.  Infantile Spasms are worse than seizures, are very very very harmful to the brain and development, and can even be catastrophic to those untreated in time. Noah went five whole weeks being treated for plain epilepsy rather than Infantile Spasms and so he endured five weeks worth of brain damaging spasms to his already suffering little brain.  He was put of a very high dose of steroid called Prednisolone which killed his immune system, made him swell up like a balloon, and caused all other kinds of symptoms.  However, the first day we went on the drug his spasms stopped for four straight days.  Light was coming back into his eyes again, he smiled, and he finally had an appetite, and our baby was coming back to us.  Then day five hit and the spasms started up again.  What could be wrong now?!?

Here is four minutes worth of a 12 minute Infantile Spasm that Noah was having daily.it is also posted on Youtube at  http://www.youtube.com/watch?v=yi9mxBUmNtQ