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. 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 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 :)

Wednesday, August 8, 2012

Noah got some new Physical Therapy Tools

Yesterday Noah had Physical Therapy.  This usually means a full hour of crying and exhausting his poor little body. He had been sleeping for quit a long time and the therapist was about to arrive.  I hate when this happens.  We only get to see the Physical Therapist twice a month so it is imperative that we get the most out of these visits.  We can't do anything if Noah is sleeping so I was trying everything I could to calmly wake up my little man.  Taking him outside did the trick.  His eyes batted open literally as the therapist was pulling up in our driveway. 

This was not just an ordinary therapy visit.  Noah was getting "toys" today!!!  Well...not really toys but that is what I like to refer to them as.  Just like I call all of his doctor and therapy visits "play dates with so-and-so." 

I didn't get good pictures at all because I had one hand trying to hold Noah as the other was trying to take a picture with my phone that does not like to cooperate with me. 

Look at that head control

putting pressure on legs
The first piece of equipment that she brought over is called a Lady Bug Corner Therapy chair.  Take one quick look and you will probably agree with me that this chair should not come with the $850 price tag that it does.  Ouch!  What are the manufacturers thinking?!?  Thankfully, the Early Intervention Program has one of these chairs that they can loan out to families.  We were fortune enough that the family who had it previously was moving so we were able to borrow it for a couple weeks.  This chair is supposed to help with his head control and endurance while putting him in a 90/90/90 degree sitting position (90 degree back, bend at his waist, and then bend at his knees).  We had to improvise since Noah is so low tone by aiding the chair with dish clothes and books and additional straps.  You can almost not see the chair with all the "extra" stuff we had to add onto it.  Once he was in it though he did fantastic.  He was able to hold his head upright for a very long time before getting tired. 

After the chair stuff Noah got fitted for arm braces.  These braces are intended to lock his elbows in so that we can get him to bare weight on his arms and shoulders.  He had the hardest time wanting to use his arms for anything more than swatting his bottle away.  These braces are way too big for him but we did get to see him use his shoulders for the first time and he loved it for all about two seconds until he realized he was using muscles he never has before...then the tears came.  You will also notice in a couple of the pictures he is laying on this object.  I actually found this one used online but you can find them pretty much in any store.  There are a few forms of them.  This one is Winnie the Pooh.  It is a tummy time toy that spins on a colorful play mat.  I wish I would have known about these sooner as I can see the potential for Noah's therapy.  

getting fitted for his new arm braces

putting him on the spinning tummy time toy...does he like it?

Look at that!!!!  Way to go Noah!!!
Nope...too comes the tears :(

Once we got him calmed down his wonderful therapist surprised him with a stimulation vest.  There are these wonderful "grandmas" out there who like to sew and create texture blankets and stimulation vests for kids with disabilities.  He looked pretty cute in it and sat there discovering all the fun toys that were attached.  What a great idea and we are ever so thankful for all these fun new "toys" to help Noah get stronger.  I just hope we dont have to return all the borrowed stuff too soon. 

Tuesday, August 7, 2012

Celebrating Teething

The pain, the discomfort, the swelling, the fussiness, the crying, the irritability, the lack of sleep, the refusal to eat, the snoring, the stuffy running red nose, the fevers, the runs............all the many stages we have been able to experience as Noah gets his first little chomper. (the bottom front left tooth to be precise). 

So why does this call for a celebration you might ask????

This is the FIRST milestone that we have been able to experience that is right on target with any other baby his age.  This is the FIRST time we have been able to act as "typical" parents to a "typical" baby ailment.  This is the FIRST time we get to compare notes and stories with all of our friends and families at the same time their babies are getting their first teeth.  Most of all...teething is something that every single baby goes through and we get to act and react like parents...nothing more.  No need for ER visits or prescriptions or nightly monitoring.  No need for special equipment or therapy.  Just a wonderful time to celebrate Noah getting his first little chicklette.  
(***clinking our cyber wine flutes).  

I love being a mom.  Jeremy loves being a dad.  Together we love experiencing this moment to just sit back, kick up our feet, hold Noah in our arms, and stick frozen teething toys in his mouth  :)

Wednesday, August 1, 2012


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 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 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.