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 add...so 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 two...you 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.
NeuroSuit

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 you...as 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.  :)

Thursday, October 25, 2012

Approaching day 365

In a few weeks Noah will reach his FIRST birthday.  Crazy that time has flown by so fast and yet stood still in so many other ways.  I was forewarned that the first few birthdays are hard on "special needs" parents but like all things you have to experience it yourself before you can really understand what everyone tells you. 

The first birthday marks 365 days that our sweet Noah has been a apart of our family.  It marks the billion upon billion of kisses we have given his adorable face. It fills our scrapbooks with pictures and memories marking every single holiday and event for the year.  It marks the first celebration we get to throw for our first born son and share with all of our family and friends just how remarkable Noah has grown to be.  This is what first birthdays are all about.  This is what Jeremy and I remind ourselves all the time.  This is what I have personally been forcing myself to focus on more than what I was told I would feel.....but sometimes the grey moments still creep in and I can't help but feel the moments of melancholy that make my eyes glisten and I find myself catching short breathes and bits of sorrow. 

Even Mother Theresa herself had moments of jealousy and sorrow.  I am only human and I have been given the gift of feeling every kind of emotion there is to have...and I do...all the time...good and bad. For the most part I have been able to really hold tight to all things positive and uplifting.  I have found the ability to see the good in all things bad or uncomfortable.  I have learned a great deal of patience and I think I have grown really strong on the inside.  I have this new idea of what truly makes someone a superhero as I have now met many throughout this year.  One smile or giggle from Noah can completely erase an entire weeks worth of struggle and despair and to me that makes him my own personal superhero.  I have learned how to still have a typical day after a night of zero sleep and how to leave the emergency room and still get my grocery shopping done the same day.  I have learned how to accept help and even ask for help which is one of the hardest things I have ever learned to do.  I found out that I have what people refer to as Pride and have had to push that pride aside to accept financial help for our son. I have found out that me being an open book as gotten Noah more services and aid than shutting our lives inside a safe little bubble.  However, I have also found out that I can feel the darkest deepest saddest feelings and emotions as well. These I hate!  I can't control what my mind wonders to as I lay there and try to fall asleep some nights.  Worry, anxiety, stress, confusion, anger, gut wrenching despair just to name a few.

As his first birthday approaches I have been struggling with a few things.  First being the fact that I have not found my inner Martha Stewart and gone crazy over making handmade invitations and ordering decorations like I have always done in the past with any other celebration.  I want to and I come up with some good ideas but when it comes down to actually doing it I just fall short.  This was bothering me so bad because I knew something was wrong for me to be acting like this.  I knew it was more than just being tired.  Then one really bad day at work happened and I sat there at my desk being blinded by thousands of lines of data on a spreadsheet when it hit me.  I am sad.  The reason I couldn't seem to pull myself together for Noah's birthday was because I was dreading it.  I didn't want to be reminded that a full year has passed and he is still unable to do so many things we thought he could do by now.  I didn't want to cry over a birthday cake I knew he couldn't eat nor would he be able to smash and get messy in like any other 1 year old.  I didn't want to think about shopping or even looking at toys that at his age are all pretty much developmental in some way and beyond his capabilities.  They would just sit in a box not being played with because frankly Noah can't play yet with toys.  Then in that utterly dark moment I continued to fall deeper and deeper into the dark hole of gloom. 

It is so easy to fall in these moments and takes literally seconds before you fall so far down that you end up with a bump or break or bruised ego in my case.  Then, you just sit there in the bottom of this stupid hole getting mad at yourself for falling in the first place and letting yourself get to that point of sadness. It is hard to look up.  It is hard to try to come up with the strength or courage or even desire sometimes to want to get out of this hole.  Sometimes I find that I have to just sit there for awhile and think or speak or share all my negative thoughts swimming in my head to just plain get them out of my head so that I don't feel so weighed down and can finally start to stand up again.

This is exactly what happened to me this past month leading up to Noah's birthday.  I fell.  I got sad.  I got mad.  I then shared.  I talked.  I got the thoughts out of my head.  Then I looked up and saw the light of day again.  It is amazing how I find myself feeling after I have shared my worries.  It is like saying things out loud somehow is like proofreading my own feelings and emotions.  It shows me all the areas that need to be scratched out or rephrased or put more emphasis on and in the end I have a really good grasp on what I am truly feeling and not just getting carried away with. 

It is not day 365...it is Noah's birthday!  It is not the day to access all that has not happened but rather how much he has overcome and accomplished.  With a whip cream pie, those who love and adore him, and two completely enamored parents we are taking Noah's birthday and celebrating his adorable toothy smile, his chunky thighs, his award winning laugh attacks, and all the wonderful memories our internal cameras have captured and stored in our memories forever. November 11th will start scrapbook #2 and I am so excited to see what kinds of memories get stuck to its pages.

Wednesday, October 17, 2012

Disneyland 2012

Early 6:00am start to the day...all MICKEYed out in his new outfit

At first I was hesitant to bring Noah to Disneyland.  First of all...we would be driving there the day he turned only 11 months old.  Is 11 months too young for Disneyland? Second, I worried about the heat since Noah cannot sweat.  Would it be just too hot for him to enjoy?  Third, the noise.  He is so sensitive to loud sounds so would this entire trip be kept calming him down from all the loud bangs and screaming kids?  I had a few more reservations but I decided to throw them all to the wind and just try and enjoy myself the best I could.  I packed Noah's portable fan, like four sets or ear plugs, a front carrier pack (with an extra back brace for myself), and off we went.

He loved all the sights and sounds
DISNEYLAND IS PERFECT FOR ALL AGES AND ALL SPECIAL NEEDS!!!!!

The weather was perfect and hovered in the low 70s the entire time which meant we could keep all the cool packs and fans and coolers back in the hotel.  The noise level stays constant for the most part so that was never really an issue (except for one ride I will mention later). Also, 11 months old is like the new three years old because you can take any infant on any ride that you would take a three year old on.  Well, most of them anyway.  Your child has to be able to sit front facing on your lap and then you are good to go.  We took Noah on so many fun rides.  Here is a quick list of them.

Being silly and laughing away
Dumbo
Small World
Peter Pan
Carousel
Snow White
Mr. Toad
Little Mermaid
Pirates of the Caribbean
Haunted Mansion
Monsters Inc
Bugs life Caterpillar ride
Jungle Cruise (this was the loud ride from the motor and the speaker he cried on)
Alice in Wonderland
Mark Twain Boat Ride



First Family Disney Trip
Disneyland was wonderful.  All the colors and music and characters and staff that were so happy and helpful.  It doesn't matter that you are carrying around a baby or that you made reservations for a fancy dinner and are carting around a completely packed stroller...they make room for you and welcome you.  The bathrooms are all equipped with changing stations if you cannot make it to the provided Baby Care Center.  If you are stuck playing with the baby while your significant other is on a ride.  They get to grab a Parent Pass on their way out and you get to hop on that same ride while skipping the line.
Mark Twain boat ride made him smile

Noah loved the Dumbo ride and Small World the best.  He would stick his tongue out on the Dumbo ride to feel the cool air and would smile.  He giggled in Small World and even enjoyed himself on the two drop off points on Pirates of the Caribbean.  All the hustle and bustle of everyone around us only added to the stimulation and "vision therapy" for Noah.  He was looking around and smiling and giggling and just enjoying himself as much as we were enjoying ourselves.
We would go back in a heart beat.  No hesitations.  No questions asked.  Disneyland truly is a magical place for everyone. 

Day #2 bright and early once again
Getting ready to go on Dumbo for the second time

Dumbo was his favorite ride

Small World was his second favorite.

Monday, October 8, 2012

Genetics Test Results


We received a call from the genetics department at Primary Childrens Medical Center informing us that the micro array snip test that was done on Noah has come back showing NO deletions or malformations on his chromosomes :)

We kind of already knew that this might be the case and actually this makes us really really happy.

Some have asked "What does this mean....What now?"

This means that Noah's chromosomes are not showing any form of identifying cause to his condition but it also means that he does not have any of the long list of conditions that would have shown up on his chromosomes.  This is great news because many of those conditions are very disheartening and could have caused many other complications to his future.

Now, this test is only one of many tests that can be done on Noah's blood/DNA.  Other tests are available that would map specific genes.  However, these tests are very very expensive and at this time we feel that it is best to wait until they are covered by insurance.  Our genetics doctor told us that in five years there will be many more tests available to us and at this time there is no rush to doing these tests.  We feel really comfortable with this thought process.  We knew going into this testing that we would have less than a 5% chance of even finding anything.

For now we are reassured with the fact that Noah does not have any of the other chromosomal deletions and also with the fact that our chances of having another child with SOD is extremely unlikely.  Not to say it can't happen because nobody has ever found a cause for SOD, but it is very unlikely and we like those odds. 

Friday, September 21, 2012

Cortisol Testing

This past Tuesday I took the trip to Primary Children's with Noah to have his first cortisol test done.  His endocrinologist wants to see if Noah's pituitary gland in his brain is producing the hormones needed for him to grow properly.  It was supposed to be a quick and easy test but it ended up being a very exhausting ordeal.

We arrived at 7:45 for our 8am appointment in the Rapid Treatment Unit at PCMC.  We registered and were surprised to be escorted to a hospital room within seconds.  The room came equipt with a very clean bathroom, a tv that I didn't get to use, a sink, all kinds of monitors, and a hospital grade crib that slightly resembled the kind of cold white metal crib you see in horror movies.  Except these cribs have drop down sides and the ability to tilt upwards.  Noah was placed in the crib as a very friendly nurse named Debby began to take his temp, blood pressure, and all the other base line states she needed.  This was the easy part and tricked me into thinking that the whole day was going to go quick and be a breeze.  Boy could I have not been any wronger.  It was a comedy of errors type of day where everything that could go wrong DID go wrong.

First the doctor was running late so they could not start until they got signed off by this doctor.  So much for scheduling the earliest appointment thinking we could get started early.  She finally arrived but then decided she should call the endocrinologist to "make sure" they were getting all the tests he really wanted.  Which was a responsible thing to do but also allowed the endo doc to add on a few more tests with extra time consuming instructions. The order was signed off on and it was then that Debby was able to stick my baby with a sharp needle to get his IV in his arm.  One quick poke and it would all be good to go and I could turn on the tv for an hour and we would be on our way (well so I thought).  Debby couldn't get the IV in.  Noah was screaming at this point because she had to poke his left arm then his right arm and just couldn't find a good enough vein in his chubby little arms.  She decided to call in the blood sucking professionals and an entire hour later two phlebotomists came in for round two of he Noah torture session.  40 minutes later, with about six unsuccessful attempts, some blood on the sheets, and Noah's eyes swollen from tears and an IV was finally in.  It was around poke 4 where I started to notice my own tears coming down my face and was about to scream for them to stop as my sweet Bobaloo had almost passed out from the pain.  You have no idea how hard it was for me to thank the blood suckers as they left.  I was just so thankful that an IV was finally in and we could just get this stupid test over with.

Unbeknownst to me, Debby could not actually order the mediation needed for the test until after the IV was in and ready.  So it was at this time that she ordered the shot from the pharmacy and then it was another waiting game for them to finally make the stupid thing.....1.5 hours later!  She let me hold him during this waiting time and I was able to rock Noah and kiss him and holding him next to my heart.  I am trying to just focus on this part because this was the good part. I sang Elmo songs and hushed him as he was still trying to calm down from crying.  We needed this 1.5 hours as much as I wished we could have just walked out of there instead.  It gave us both time to relax and calm down and just be mommy and son. 

The medication was finally administered into his IV after two viles of blood had been extracted beforehand to mark a baseline of his blood levels.  The shot was filled with a generic low grade ACTH drug.  ACTH is the hormone needed to signal the pituitary gland to release cortisol.  Cortisol in turn is the hormone that tells the other adrenal glands (kidneys and such) to to their specific jobs.  If Noah's pituitary gland isn't working like it should then this test will basically tell us that Noah will need cortisol injections to help him grow healthy.

30 minutes after the ACTH was administered Debby came in to collect another vile of blood to mark as the "30 minute marker" to compare to the original blood drawn first.  Another blood pressure reading was needed and that meant another round of her trying to find a cuff to fit Noah and also me maneuvering him all over the place so that an actual reading could be recorded.  It is very hard for them to get pressure readings off of Noah for some reason.  It was also at this time where we were informed that Noah needed to have a urine sample taken to test for Diabetes Insipidus.  He has been tested for this in the past so I felt comfortable with this test.   They had to put a plastic bag around his manhood to collect the sample.  Thankfully they didn't need to do a catheter. This time however they had to use this sticky tape to secure the bag around his manhood to keep it in place.  Last time Noah peed the second his diaper came off so the nurse was able to just collect it without securing the bag to him.  So there he has with one arm braced straight with an IV inserted and tape keeping everything in place.  He had one foot bandaged from an IV attempt as well as another blue bandage securing the heart monitor to his big toe.  Then he had three different Leeds taped to his chest to monitor his saturation levels and other things.  Then on his other foot he had his name tag secured to his ankle and another IV attempt band-aid.  I felt so bad for him lying there and I couldn't hold him at this point.  Debby did bring in a musical crib toy and that seemed to really help Noah feel at peace for a bit of time.  It played one tune over and over and in the beginning I found it soothing but now it is branded in my brain as the soundtrack to Nurses who Torture Noah!

Another 30 minutes went by and the last and final blood draw was taken for the test.  We were done!  Thank you God!

Spoke too soon I guess...or maybe God didn't like me shouting out his name that way.  We were then told we had to wait 60 minutes as an "observation period" to make sure Noah didn't have any kind of reaction to the ACTH.  They could have preped me for this earlier.  It was now past noon, I was starving, Noah was starving since he had to fast for this test, I had to call work where my wonderful boss just told me to take the day off since I originally thought it was only going to take two hours like they told me it would.  Noah was exhausted and so was I.  He started to slip into dreamland and I took this opportunity to give him a bottle now that I had the go ahead.  It took me 40 minutes to get in 5 ounces due to monitors going off and beeping and waking him up.  My arms were throbbing from having to bend on the crib frame to feed him and to also secure his head from falling to one side or the other since I had to elevate the bed to give him his bottle.  As soon as he was fed I sat down on the Asparagus colored vinyl chair and must have dozed off for a few minutes because I was startled awake by Noahs monitor going off for the 100th time.  Nothing to worry about...just a Leed not reading correctly.

Debby finally returned to us at 1:25 to "release" us from the hospital.  She then proceeded to give Noah round three of the torture session but kept replaying the music to hopefully keep him calm.  She was being very careful and was trying her hardest to make it easy for him but ripping off tape, unplugging the IV, cleaning off the sticky tape glue, and slowly ripping off the urine sample bag in such a sensitive area was just more pain that Noah could bare.  Screamfest 2012 happened and I was sure he was going to puke out all of his bottle on me.  She couldn't let us officially go until she got one last blood pressure cuff reading and with me trying to calm Noah down at the same time just didn't work.  I was at least able to pick him up and rock him and bounce him and kiss him and sing to him and it was then when he finally started to calm down...just enough for the pressure cuff to then squeeze his calf and get him going again with more tears.  Poor little guy had enough and I didn't blame him one bit.

We walked out the hospital doors at 2:00pm.  SIX hours later!  Noah fell asleep on the way home and then woke up when I had to stop at a McDonalds to get myself some quick calories.  Thankfully my mom surprised us with a visit to our house where I was able to eat my thigh hugging fries as she got Noah to coo and babble and smile.  I am so thankful to have such a wonderful Mom who is always there when I need her and always knows when I need her too. She even came with yummy heart lifting chocolate in hand.  She left to go back home and Noah and I went to cuddle on my bed where we both fell into a very deep sleep until Jeremy got home and then he spoiled us for the rest of the night :) 

So thankful this day is in the past.  I am finally over it and was just now able to relive it all one last time to write this post.  As soon as my fingers stop typing I am going to delete this memory from my mind and make room for a very happy one that I am sure we are going to experience this weekend :)

........test results are in but the doctor hasn't been able to write his report so I will have to wait for him to call me next week I am sure. 

JUST IN:  ALL RESULTS CAME BACK WITHIN NORMAL RANGE!  No worries at this time for any form of adrenal problems.  Endo doc wants to test his thyroid with a quick lab blood draw the end of October.  GREAT NEWS!

Wednesday, September 12, 2012

Shriner's, Genetics Test, Fundraiser and other Updates

Happy Post!  Glowing Face with big Fat Smile!  Yes...an All Good Post!  (just a few other names I really wanted to title this post)

This is going to be a doooozy of a post since it has been so long and I have much to update on.  I will try to make it short though so as to not bore you with too many words with extra vowels. 

Genetics

Yesterday was officially the three week mark since our genetics appointment and also the day I was told to contact our insurance to see if our appeal went through.  It Did!!!!  This means that Noah is going in for a quick blood draw today and we can save about $5,000 it was going to cost us for this test if our insurance did not approve our appeal for the test.  As happy as we are to get this done we are also very aware that we have a less than 5% chance of it showing us anything (also the reason we didn't want to fork out $5k we dont have for this test).  It is called a SNIP test or also know as the SNIP Microarray test. This test will take Noah's DNA and separate all the chromosomes and find out if any of the 23 chromosomes have any form of deletion or malformation.  According to our genetics doctor it is extremely rare for kids with SOD (Septo Optic Dysplasia) to find a cause through this test but he has been humbled too many times to say they never do.  In the off chance that something is found then it will give us more insight into what to watch out for in regards to Noah's other organs or our future offspring. 

Shriner's

Yesterday was also the day we had our first Shriner's Hospital assessment.  I honestly did not know what to expect and was a bit nervous to tell you the truth.  I so badly want to see improvement in Noah's development so I always get nervous when it comes to visiting places that provide hope.  The place is actually quite beautiful.  You walk into the main lobby and they have this painting on the wall made from bold and bright colors that is really quit eye catching.  You could easily pass time in the waiting room just by staring at this mural.

We had to pick a number and then wait to check in.  They took my insurance card and this is the part that makes me nervous.  I have been told that my insurance will cover 20 Physical Therapy visits a year and since Shriner's now bills insurance this will use up all 20 visits.  However, the cool part about Shriners is that we will never have to pay a co-pay and even if/when we use the 20 visits they will cover all additional costs that my insurance will not.  This is fantastic.  However, this also means that they have to use all 20 visits up front and therefore diminishes Noah's chances of going to this center called Now I Can until probably the middle of next year.   It is only September and so I would like to take Noah to Shriners as many times as possible to use all of the 20 visits we have for 2012.

We met with an orthopedic physician who was really fun and young and talented.  She spoke with us for some time and then said "so what brings you to Shriner's...how can we help you???"  I do not know why but I was stumped by this question.  I responded with "Well, with the help we are receiving with Early Intervention we are still not seeing the results and Noah just isn't developing like he should."  I think that was a pretty good answer cause then she had a full plan for us.  She is "plugging us into their system" as she stated.  They have a Physical Therapist, Occupational Therapist, Speech Therapist, and Dietician on hand that can help us.

Two minutes later the dietician was sitting down with us to go over Noah's nutritional needs.   Looking at Noah you see a chunky little monkey.  However, when you take his length (28 3/4") and his weight (19.3 lbs) and then calculate his overall percentage he is only at 18%.  According to this woman (who had the exact same voice and demeanor as the young female counselor off of the tv show Glee....brochure anyone?) a "typical child should have an overall percentage of 25%-70%".  So basically, under all those rolls Noah is still "underweight".  Crazy!  So he has a very strict eating plan for the next two months and needs to consume 850 calories a day.  In two months we will re-access and go from there. I never thought I was going to have to count calories for my baby and literally watch every single morsel going in or drooling out of his mouth. We have to bump up his calories with good fats.  Ideas anyone????  We are already doing avocado's and olive oils but need some other ideas.

Today I am supposed to call and speak with the woman in charge of scheduling physical therapy visits.  I have no idea how many we can schedule or even what the protocol is yet for Shriner's.  I am trying not to get my hopes up since I do realize Noah is only 10 months old and there is only so many things a young baby can do.  I will keep you posted and let you know how our experience is with Shriners once we are officially in the system :)

Early Intervention 6 month Goal Planning Session

As if yesterday wasn't big enough of a day we also had to throw in our Early Intervention goal planning or IFSP.  Every six months they reevaluate Noah to see what areas we need to work on more and also to see if he has met any of the prior goals.  It is a bit disheartening when they go down the list of goals and you have to keep saying "nope...he still can't do that."  Our first goal session was when Noah was 3 months old and at that time goals were set where they thought he could be standing on his own right now, saying a couple words, rolling all over the place, picking up cheerios and chewing on them.  This was all before he was attacked by Infantile Spasms and therefore is still unable to reach any of those goals.  Our new goals are much more realistic this time.  In six months we hope to see Noah putting weight on his limbs, holding his head up for ten minutes straight, gaining weight, holding a toy for more than three minutes straight, reaching out to grab something, sitting on his own.  I pray that these goals will happen but once again...try not to get my hopes up.  They will come eventually and I really need to work on my patience.

Noah's Fundraiser and Now I Can



Our good friend has started a fundraiser for Noah through a website called fundly (link on the top right corner of this blog).  It took my husband and I many weeks of discussion before we fully felt comfortable with the idea.  Nobody ever wants to feel like a charity case and it is still hard for us to accept the fact that we need financial help.  We are part of what most people would consider "middle class".  We both work full time jobs, have a mortgage, and both have a vehicle to get us to work and run Noah to all of his appointments.  We are hard workers, both have degrees, and consider ourselves to be very positive people.  However, it just isn't enough when it comes to having a special needs child.  Bill after bill and co-pay after co-pay has really taken a toll on us.  There are so many things we would love to provide Noah with....like the ability to walk and talk and eat. In order to achieve that we have to pay thousands upon thousands of dollars to get him into the centers that help him develop in all these areas.  Since we have been denied for medicaid and SSI we are on our own.  We are managing but with each month it gets harder and harder.  This fundraiser is going to be a massive help to Noah's development and about ten times a day I want to just cry because of all the love and support people are showing our sweet little boy.  It is times like this where I wish I could really show our gratitude in more ways than just words.  A simple thank you card just doesn't feel like enough and I have been racking my brain trying to figure out just what to do to thank everyone.

We have decided that Noah would really benefit from a place called Now I Can.  It is a intensive physical therapy clinic that is mucho expensive but really rewarding and we plan on using most of what Noah receives from his fundraiser to get him into this clinic.  Noah is a bit too young right now but next year we are hoping to get him in.  I have done so much research on different facilities here in Utah and this one seems to have the best results.  I can't wait to see what kinds of milestones Noah will be able to achieve once we get some really good hands on therapy for him. 

Noah's Fun Developmental Stuff

This is the fun stuff.  Pictures and cute videos of our sweet Bobaloo.  Last week Noah put weight on his arms for about 10 seconds assisted.  This is huge for us and we are trying really hard to build on this. 



Noah is a laugher and we LOVE IT!  His aunt and cousins seem to always get him going and he thinks they are just the funniest people on Earth.  I happen to agree :)

E.L.M.O.....Noahs newest favorite thing.  It was by accident that I even figured this out but it has already proven to be a huge thing for us.  Noah will actually try to focus on elmo and hearing elmo sing makes Noah work harder and longer.  I never knew I could love a puppet so much.  We are only on day three in the Elmo world but I am hoping that I can use elmo to entice Noah to do things like turn his head to see elmo or maybe just maybe get him to make some new sounds.  The video is sideways because it will not let me upload it when I try to change the direction for some reason. 






Funny picture I got of Noah yawning.  He just looked cute so I had to share.

Monday, August 27, 2012

Happy Tears

Going through all that we have since Noah's birth I have been able to build this type of strength that has allowed me to not get so emotional or phased by negative things as much anymore.  There are many times that I still get that choked up feeling in my throat where I just wish I could scream and shed a few hundred tears but nowadays I just can't.  I am not 100% sure if this is a good sign or a bad one.  I can cry but now it is like I have to choose where to shed the tears so I don't get too exhausted and can still be the super mommy Noah needs me to be.  Tears are two folded.  A way to express negative times but also a way to express positive ones.  Last night I shed many tears.  They rolled down my cheeks one after another for many minutes.  This time though...they were happy tears.  I have not shed happy tears in awhile and it felt amazing.

As you may be well aware of but if you aren't it takes the strength of an army and the patience of at least 10 people to feed Noah each time.  Something that could normally take 15 minutes takes us around 45-90 minutes each time.  We have to be very precise in how we lay him down in a chair or propped on a pillow, how we hold the bottle, how we hold his chin, how we prepare his food, how we block the light or noise, how we timed it from the last feeding.  Throw in at least 10 other obstacles and then we might get super super lucky to get 4 ounces in him each time.  On the very rare occasion we are able to get 7 ounces in him if he is sleeping and his natural sucking reflex lets him get a full serving without the struggle of the whole suck/taste/swallow/breathe routine getting in the way.  The whole process is exhausting and one that I pray changes multiple times a day.  It is either this or tube feeding again and that is not an option in our minds (ever again!)

This weekend was the worst.  He did not want to eat at all.  We recently changed his formula to a soy base and I am not sure if that was why but he refused to eat even his baby food.  I battled each feeding session and was at my wits end come Sunday night when it took me 2 1/2 hours to get four bites of baby food and 3 ounces of formula into him.  Jeremy took over as he ordered me to go take a nap (I have the best husband :)).  After I woke up I waited a couple hours and it came to the hour of his last and final bottle for the night.  I started to get anxiety over it.

I started to prepare the environment and Noah to fight the battle  so to speak but then I just felt defeated.  I then decided that I just wanted to snuggle Noah for ten minutes to calm myself down before making him and myself frustrated and tired.  Noah was being adorable in my arms.  He never ever ever lets me hold him cradled like a baby.  I have not done this hold for at least five months for more than a second or two because Noah hates it so much.  Last night however he just sat there staring at me as I held him in the cradle position in my arms.  He was smiling at me and just looking at me.  My heart felt like it was going to burst because it was so special for me to have that connection with him.  Then I picked up his bottle, said my little eating prayer I do before I feed him, and as I cradled him he started to suck from his bottle wide awake staring at me.  I burst into tears.  I couldn't help it.  It felt like the week I brought him home from the hospital before all of his eating difficulties.  I was actually holding my baby and feeding him while he was awake, while he was staring at me, while he was smiling...and not fighting the bottle.  Tears were just running down my face the entire time.  At one point Jeremy even came down to ask me a question but I couldn't answer nor could I take my eyes away from Noah's sweet face as he slipped into dreamland but still taking his bottle in the most natural rhythm he has done in months. 

I normally do not share such private moments but this is one of those times where I can't help but want to tell the world "I fed my baby in my arms and he ate!"  It sounds so funny to say that and if you didn't know me or Noah you would think I was losing it but I don't think I will ever forget that moment and will cherish it forever.  Our faces were 8 inches apart, our hearts were 2 inches apart, his left hand sat resting under my chin as his warm cuddly body curved around my waist.  There was no fight, no battle, no struggle.  This was the one feeding session where I wish it would have lasted 90 minutes.  Could I be so lucky to make this happen again this week?  I'm going to take that challenge and see if it can  :)

Friday, August 24, 2012

Genetics + Endocrinology + Speech Pathology = Busy Week

It has been one of those weeks where you just have to call it "One of 'THOSE' weeks!" We were overbooked overly exhausted and so over waiting rooms.  Monday we met with Noah's Endocrinologist.  All good news...which is great!  So far Noah is growing like he should so no growth hormone problems yet.  His Thyroid and other blood related tests all came back normal :)  We are getting his cortisol testing scheduled for sometime in September and crossing all fingers and toes that the test comes back normal as well.  Then...in six months...we test them all again.  It is important for kids with Noah's diagnosis be tested for hormone deficiencies at least twice a year.

***funny side story.  During our hour long wait for the doctor Noah decided to have the biggest blow out of all time.  If I had a pair of scissors with me I would have just cut him out of his outfit it was that bad...and smelly.  I was so embarrassed.  It was everywhere and on everything.  I was quickly trying to clean him as he was quickly trying to spread it everywhere his little hands could reach.  Which of course was the wall, the medical table, his hair and face, my dress.  Thankfully I didn't mind the hour long wait because it pretty much took me that long to clean up the mess.  When the nurse came in I was so embarrassed cause she brought with her a plastic bag because she could tell from the smell down the hallway that it was needed in our room.  One for the books I tell ya.

The next day we had our very first visit with a Geneticist.  He was very friendly and so was his staff.  It was a few hours long and we had to go over all aspects of our family we could regarding diagnosis or cancers or anything else that stood out to us.  The doctor then went into great detail telling us that Noah is officially being labeled as SOD- Septo Optic Dysplasia which is either a diagnosis in itself or an umbrella term to describe many things that fall under the term SOD.  He said that out of ALL the families he has who have been diagnosed as SOD not a single one had another child with the same diagnosis.  Now, he also said that that doesn't mean it can't happen and he has heard of families with multiple children who have it but their SOD is just part of a greater syndrome or disease or diagnosis.  Do far all of Noah's symptoms fall just under the main diagnosis of SOD so this was good news for us.  He also is going to write an appeal to our insurance to see if we can't get the micro-array/snip test done on Noah to see if his DNA strands are fully intact or if one chromosome is missing a part (which would diagnose him with something different).  He said the chances of us finding anything are less than 5% but he has been humbled too many times to say they have never found something from this test with SOD patients.  For now it is a wait and see game to see if our insurance will cover it or not.  He also said that currently technology is evolving and he predicts that in just a mere five years there will tests available to us to do further exploration on Noah's genes.  He said that SOD patients for the most part never find a cause but many of them can rule out genetics being a major contributor.

***frustrating side story: upon leaving this really long appointment I was backing out of the overly crowded and really dark parking garage and backed right into someones bumper.  100% my fault.  While I was hastily looking for children and mommies with strollers I was not paying attention to the fact that I backed up one inch too far and scratched another vehicles bumper.  One sorry note, a few phone conversations with the vehicles owner, and $450.90 later I can put this behind me.  Thankfully, the owner was really understanding and we sat and chatted for awhile about our kids and all the hospital visits we have.  Of all places to scratch a car I guess a hospital might get you a more sympathetic owner. 

No...the week isn't over and neither were our appointments.  After Physical Therapy right after the car incident we were then scheduled to see a Speech Pathologist the following morning.  Noah has been having really runny diapers, a rash under his chin, and a month long refusal to eat.  It takes us literally an hour to feed him every time because he refuses to take the bottle.  Upon discussing all of this with the doctor she said that she feels like maybe might have a dairy intolerance.  If it hurts him to eat he will refuse to eat.  Makes sense to us.  So now he is on a soy based diet...two days in so far and things seem to be improving a little bit.  We will know more over the next couple of days but I hope that this is all there is to it.  She then scheduled us to see a Nutritionist in September as well to go over calories and Noah's specific BMI goals.  Yay...another doctor to add to his already long list of M.D.'s.

Beside all of the doctor stuff Noah has been cute as a button.  He has learned how to blow raspberries and is laughing out loud more and more every day.  He also made a clicking sound with his tongue this week and we hope that these two things might be good signs that he will one day speak.  We have 10 full glorious days doctor and therapy appointment free and we are going to soak it up like no other.

He has mastered the thumb these days

It takes a lot for him to get really comfortable but when he is he is out like a light

taking a break during tummy time

Wednesday, August 15, 2012

Counting our Many Blessings

You know that old saying "If it sounds too good to be true...then it might just be."  I keep trying to just push that saying out of my mind because right now things with Noah are almost "too good to be true" and I pray that it continues like this for a long stretch of time.  I will admit that I am getting a bit more anxious each day because I have this total fear that something major is going to happen and kill our high we all have going right now. In the past three weeks Noah has made leaps and bounds.  He has learned more in these three weeks that probably his whole 9 months.  He isn't ready for the next Olympics or anything but let me just list what we have been able to witness him do recently. 
-Bringing his hands together in the center of his body and finding his fingers
-Not only wanting to suck on his thumb but has mastered actually getting it into his mouth on the first try (that is great aim for him).
-he is laughing out loud....like full blown belly chuckles (it is the best!)
-He has not had to have miralax for almost 2 weeks and has been able to go potty daily
-He no longer bawls his eyes out when Jeremy or I sneeze or when our dog growls
-he is moving his neck and head from side to side and isn't favoring the right side too much anymore.  Which means that his head is finally getting a more round shape and his bald spot is starting to fill in
-He can pull his whole body forward from the sitting position.  He can't get up yet from being bent over but that shows me his ab muscles are getting really strong. 
-He has a STRONG desire to sit up which makes it really hard to hold him right now but brings a smile to my face.
-He is starting to show tone in his limbs :) :) 
-his neck is getting so strong that he only drops his head a few times each session now
-he is able to take both hands and push his bottle away or spoon away when we feed him.  Not something I like and gets us really messy but I will take the shoulder and hand movement any day.
-he got his first tooth
-HE GREW!!!!! (finally...he is 28.15 inches long and 18.11 pounds and his head finally grew yay!!!)
-He is tracking us and starting to really recognize us.  I say his name and he will turn his head towards me with a huge smile that melts my heart. 
-He finally made a new sound (ga-ga).  He mastered a-goo long ago but getting him to do any other sound has been a feat.
-he is starting to slightly put weight on his left hand


Can I just tell you how happy and elated we feel right now.  I love being able to tell people when they ask how Noah is doing "Things are fantastic right now!"---and mean it!

We have a busy rest of the year ahead of us.  We meet with the Endocrinologist to have his Cortisol levels checked in September.  We meet the Geneticist next week for the first time.  We have too many therapy appointments to list, we have an MRI in November, we have an eye appointment to find out how his good eye is doing, we have Noah's first birthday to celebrate in November, Plus all the fun holidays to celebrate with our little man.  His neurologist also wants to start weaning him off his Topomax in a few months and are not yet sure what new medication we will be putting him on.  I am so curious, excited, and fearful to transition him off this medication.  It is currently making it so he has zero appetite (feeding problems), can't sweat (overheating problems), and can't learn how to speak (cognitive coordination problems). I pray that these three areas improve but pray more that his seizures do not come back in full force and bring us back to square one again. 

For now we just keep stock piling all the many blessing being send our way from all of you.  We hold them near and dear to our hearts and every day we use them to help us stay positive and excited for Noah's future. 
Noah Camping and trying to sit up on his own

Horrible picture but we bought a Huga-bebe that I just love and Noah is now able to sit in a lovely pink exersaucer and play. Notice his hand actually reached out to play with one of the toys :)

Noah and Sake' our puppy joining dreams

That expression!  Not sure what he was thinking but he was obviously thinking pretty hard at this moment while sitting up again :)