Thursday, December 27, 2012

Now I Can Foundation: Physical Therapy

Noah had a very unique opportunity to enroll in an intensive physical therapy clinic located in Provo Utah called Now I Can Foundation.

Without rehashing everything that is already on their own website about how truly wonderful this PT clinic is, I will just tell you our experience and how we personally felt about each step of the way (with pictures and video I might this will be a very long post).  

Exhausted after day one.  Kinesio Tape on his lips
This is a VERY intense PT clinic and not for those who cannot handle their kids crying to the point of coughing and making a snotty mess everywhere.  It was hard on both Noah and myself (or those wonderful family members who took him a day or know who you are :))  Honestly, it was very very very hard due to the intensity of the therapy, the constant crying, hearing other children cry, the drive, the financial cost, the interruption of our daily lives, the soreness, the test on our patience, the traffic getting to the office off the freeway...ect.  However...the worst part about the whole adventure was the very last day when we drove away not knowing when we might get to go back because even with ALL of the hard stuff it was 100% totally worth it!

I could make this an extremely long post if I went into detail about every single day but to save you the headache I will try my best to make quick detailed descriptions about what they did to/for Noah and how it helped.  First, you have to keep in mind that every child and their challenges are different and in Noah's case our biggest challenge is his severe hypotonia (low muscle tone).  His is so severe that he couldn't even hold his head up at 12 months of age.

You can purchase either a 3 or 4 week "session" at Now I Can.  Each session consists of going Monday through Friday for four hours straight with zero breaks.  You can either get the morning session that goes from 8am-12pm or the afternoon session that goes from 1pm to 5pm.  We opted for a 3 week afternoon session.  Their facility is pretty small so they can only take on a grand total of 6 children in a 3 week session (3 in the am and 3 in the pm).  Of course this is all subjective to the staff on hand and the time of year as well.  You have to be sure to contact their office to go through their availability as they do fill up really fast since they are so wonderful.  As of December of 2012 the cost was $2000/WEEK....really pricey!  HOWEVER they do take insurance and they do offer grants that are not subjective to your family income at all so be sure to submit an application.  We were fortunate to have raised enough money on Noah's fundraiser to help us with a majority of the cost as well as receive a $1500 grant from the foundation. They also offer a free assessment if you would like to visit the facility and have them evaluate your child to tell you how they can help you and your personal goals.

My first hesitation besides the cost was the fact that Noah was only 12 months old.  How could he possibly do four straight hours of therapy without falling asleep. My second hesitation was his inability to eat or drink well...or drink any liquid of any kind while awake.  How would he stay hydrated.  Well to make this quick they can do every single therapy exercise even when they are sleeping like a log (which Noah did a ton).  They can also work with tiny babies and the earlier they start the better so his age was not a challenge at all.  Also, there is a 30 minute time frame where they are in a Stander and they can eat or drink or nap or you can read books to them or play with them which makes them feel like they are getting a break.  Also, we found that as long as Noah drank enough that morning he would stay hydrated and we could then use wet clothes to moisten his mouth with during therapy.  They do not stop what they are doing ever...even to change a dirty diaper they incorporate some type of therapy stance or trick into it.   They start exactly on time to the minute and go until the last minute of the four hour day.  It was a lot to take in the first week and I will admit I cried after the first and second day because Noah cried the entire time.  As the days and weeks went on it got much better and we even had two full days with zero crying.  It really shows how much our little ones can take and how much better they are for being challenged.  Noah was much stronger than we ever thought and now know how much he can handle at a time and where his limits are.

You are working with a team of therapists so every single day you get a different therapist and sometimes even two different ones a day.  When we went we had three wonderful therapists working during our session.  Sergio, Nacole, and Mark.  All three have different styles and techniques and they all work together so well.  They are so kind and easy to talk to.  I never once felt intimidated or threatened by any one of them.  They also listen as well so if you feel like they should try something or stop doing something they listen to you and do it.  They are not scared of screaming kids and have the most patience I have ever seen.  They will wipe noses and change diapers and sing silly songs and you can just see the pride they have for their jobs and patience.  Another good point I should highlight is that if/when you feel comfortable with the facility and the staff you may actually leave your child there and go for a walk to clear your head or run errands or do some work or go shopping if you want.  Take a little break for yourself while your child is being cared for treated with respect and kindness.  They have a small tiny itty bitty room off of each of the three therapy rooms that is set up for you with a couch and books and a tv and laptop hook ups.  It has a window so you can watch the entire session from the room.  They will let in the room the entire time as long as it does not distract your child from their therapy.  Many children will just cry for their parents or not want to listen to the therapist if their loved ones are in the same room as them. I spent most of the time in the therapy room but once or twice I could be found working or reading a book on the soft couch in the parents room as I called it while Noah screamed bloody murder and I was doing everything in my power to stay sane and calm.  When things got too hard on myself I would look to the therapists and see their calmness exuding off them and that helped more than I could even describe.  Its like they know that the discomfort and irritation benefits these children and that no tear or scream or runny nose could sway their work.

The first day is a 1 hour assessment day where the child will be fitted for a NeuroSuit.  This suit is meant to help their body and muscles to work in the manner they should and helps eliminate them from moving or bending in a way that is not natural.  For Noah they created the suit specifically to make him not have the ability to arch backwards as that is one incorrect habit he has formed.  It also acts like a pressure suit to help with muscle memory and awareness.  It takes about 10 minutes to put on and off each day except this first day when they are getting him all measured and fitted.  This time also acts as a kind of break for the kids to just lay there and not have to work.  After the fitting they did all kinds of exercises to see the areas Noah needed work on.  Noah's main points were his balance, his head control, and to help him realize and use his arms. To buy one of these suits of your own they run upwards of about $7000 and then $700 for 100 of the small black bands that strap you in them.  Mucho Expensive!   

Each day flowed the exact same and never really changed except for maybe 2 of the days.  This allowed for consistency and normalcy for myself and Noah.  After the third day I knew exactly what they were doing and going to do next so I was able to time liquid for Noah or if I had to run an errand.  It also got the point where I could time diaper changes as well since moving little bodies will make for really horrible messy blow outs :)

Each day started with about a 40 minute warm up where they take Noah's socks off and would do all kinds of really soft pressure massage like exercises and techniques to his entire body to wake up his muscles and stretch him.

weight on his arms and hands and shoulders

Neck stretching
 This would then flow into floor exercises to work on his balance, stance and muscle control.  Also, I think to evaluate where he stood at that point to access if he was gaining more control or awareness each day.
Side laying with hand and arm reaching

Balance and leg support

Then it would be time for the Neurosuit and many more floor exercises with/without tables, benches, and other propping equipment.

Look at that Head control and balance on his arms

Knees together, weight on arm, lift head

Upper body balance and weight baring through arms and shoulders

trunk control, knee and hip balance, head control

alternating leg stance with hip lifts

backward arm strengthening and balance with leg support and extension

He found his right arm this day and caught himself from falling over...I cried!
After the Neurosuit and around the 2 hour mark they would set him up with a makeshift Stander to get him weight baring through his hips, knees, and ankles.  This would also help with his neck and head control.  It would be at this time where I would have 30 minutes to feed him or he would nap or I would read him books or sound making toys.  He loved this part and I made sure to be there every single day to be by his side during this time.  The therapists leave at this point but if you were unable to be there they would stay with your child or one of their fun loving aides would be there to be by their side.  They are never left alone ever.  **Quick note to those looking for a stander.  They are extremely expensive but if you look at these pictures you will see that you can make one at home that will do the same stuff as the expensive ones.  We just got approval through our insurance for one but I made sure to take good pictures just in case we had to make our own.

Stander for bigger kids.  Noah didn't fit in it but I got a pic anyway. Plywood and 2X4s with some heavy screws and washers, a bit of carpet, some stickers and paint, and then you will also still need leg braces and some type of strap system to support them onto the stander with.  
 After our 30 minute "break" in the Stander it would then be time for the Spider Cage. The Spider Cage is meant to be used for low tone children whereas the Monkey Cage is used for High Tone kids.  We never even saw the Monkey Cage.  Most children I guess love the Spider cage as it is easier for them to do exercises in.  However, Noah hated it!  He cried most every single time he as in it.  I think it is because he has yet to learn that he has arms and hands and can balance himself by using them.  It is a large metal cage that Noah and a therapist would sit in the middle of.  Noah would then wear what looks like a weight lifting belt that had metal rungs on it.  Then 8 bungy cord looking ropes would attach from the cage to the rungs from each of the four corners of the cage.  Noah would be in the middle being balanced by the push and pull of each of the ropes.  The therapist would then be behind him maneuvering his body into different positions.  This would go on for about 45 minutes or so.  He would usually wear leg braces as well to help him in the standing position. 
Really does make them look like a spider

Hates it on day One.

Week 2 he got more used to it and they stood him up with leg braces

Week three we actually had a few smiles in it.

After the Spider Cage is was back to the floor mat to do floor exercises again.  I would see major improvements at this time from all the muscle awareness that had been created from the NeuroSuit and Spider Cage.  It was also at this time where they would try out new things like table propping or Kinisio Taping.  Then they would do some more cooling down stretches and the clock would hit 5pm and we would then be on a mad dash to the car to try and beat the going home work traffic.

Table propping with Noah weight baring on his arm and both feet on the floor Week 3

Front view of Noah with the Kinisio Tape...Baby TRON is what I called him

Back view of the taping.  It lasted for 6 days and left some pretty dry skin underneath. 

The first week was the worst because Noah screamed a ton, he had a stuffed nose so there was a mess every day from the crying acting as a natural nasal-irrigater.  Week two is where we saw all of his improvements start to come alive and was my favorite week.  I cried a lot out of pure happiness and joy for my son this week.   Week three was trying to test him further and to have me learn what I can do with him at home after the session was over.  They do provide a folder of home exercises with pictures on the last day.

Our realistic goals on day one were to help him gain head control, try to get him to roll over, and to start trying to get him to sit not resting his head on anything (but still supported).  Today just one month from those goals being set I am happy to say that Noah is at a 99% head and neck control.  He can sit up assisted for a very long time with his head not resting on anything. And even though he still hasn't mastered rolling over he is finally starting to figure out that he has hands and arms. Each day he has surprised me by catching himself on an arm or grabbing something.

This video is from day one at his assessment.  He couldn't even keep his head up at all without the head strap and hat.  He also couldn't balance nor would he even try to use his arms or hands.  His legs also had to be tightly strapped down to keep his knees together and his legs straight. Sorry they are all sideways.

This second video is from week 2 where Noah's head control got significantly better and this is the day he found his arms and hands. He was also more comfortable in the NeuroSuit. 

This last video is from week three.  You will notice his remarkable head control now.  He also was doing so well with his balance that they were able to get him in the squatting position and he didn't mind it at all.  His back was straight and he was no longer trying to pull himself backwards to over correct himself like he was in the beginning.  

Our overall experience was rewarding and we will be going back as soon as we have the financial ability to do so (as well as time off work :) ). I highly recommend intensive therapy.  For every tear drop that was shed during this time we have experienced as many from watching him learn and progress since. 

The staff at Now I Can can answer any questions about what they can offer you but if you have any questions you would like to ask me personally please email me at my address listed on the left side of my blog. 

One last shout out to my sweet Noah.  I witnessed a miracle one day and actually got a portion of it captured in a picture.  As we were patiently waiting on a doctors office I looked down and Noah had reached out his arm, grabbed his bell toy with his hand, grasped it hard, shook the bells, and then had a death grip on the toy for about three minutes.  I was overcome and wanted to jump and shout...but I am sure everyone else would think I was insane so I just snapped this picture and almost peed my pants out of pure happiness and laughter.  
Death grip on his bells

Thursday, December 6, 2012

Noah's First Birthday


All the anxiety and stress I felt up to Noah's first birthday was pretty much a big waste of time.  Not saying that my emotions were not real or justifiable but for those of you who see yourself approaching your child's birthday and feeling the type of emotions I posted in my last blog then stop in your tracks right now.  Allow yourself to feel them but keep in the forefront of you mind that your child's day of birth is worthy of a celebration no matter where you are or what you are feeling and as that day comes to an end you will be filled full of pride and love and warm fuzzy feelings. :) 

I was worried about the fact that Noah can't eat cake on his own and I would miss out of the smash cake pictures and fun moments.  Boy was I wrong.  We made him a whip cream pie and Noah went to town getting it all over and loving every minute of it.  It was the highlight of the day for me and made me tear up just seeing him have his special moment. 

The other children around us who were playing and crawling and walking and talking and eating.....I LOVED IT!!!!!!!  I thought I would get sad seeing this since Noah isn't there yet but in fact seeing other children's faces light up and having fun brought me so much joy and happiness.  I love these little people and each one of them have a special place in my heart so seeing them having fun at Noah's birthday was just wonderful. 

I worried about his milestones and how an entire year has gone by and he is only at a stage where I prayed every day he would surpass.  Well...let me just tell I was putting together pictures of his first year into one ginormous folder on my desktop I realized how seriously far he had come.  You see, I get to see him every single day so I didn't notice or realize all the tiny things he accomplished almost daily.  Where my memory lacked my snapaholic momma pictures brought to life how hard Noah has worked and how many milestones he has accomplished.  I just giggled going over each memory and thought to myself...."Oh my!  What will I get to see and how many moments can I capture in year two!" 

We are currently living an extremely busy lifestyle at the moment for which I will be blogging about in days to come.  I cannot wait to show you what Noah has been up to and post comparative pictures in all the areas he has improved on these last couple months. 

For now....I'm off to live my overflowing plate full of adventures, tests, tasks, and festive holiday shenanigans.  :)