Friday, February 21, 2014

Two Years Old (or in medical terms 27 mo. 10 days)

Where have we been?  How is Noah doing?  How are we doing?

Summary of our past six months:
Life happened...plain and simple.  We have had some horrible hospital stays and we have had some amazing adventures.  We have had holidays and family and friend get togethers.   We have seen seasons change and have watched Noah as well as my belly grow bigger and bigger every day.  Noah will become a big brother to two new siblings come late July early August.  Like I just happened and we have been living it to our fullest as much as possible.  There have been many tears (mostly on my part) but way more laughter (on everyones part).  I think every single emotion a person can feel has been felt.  We have experienced some high highs and some low lows but right this second as I type these words we are just happy and content.

And here is why.......

Our Super Hero
Noah turned 2 on November 10th.  For some reason it has been like a light turned on for him.  Things have been happened for him and us.  Things we can't even explain.  Things that may look tiny to the average eye but are massive to those who get the privileged of Noahs company on a regular basis.

Length: 38inches
weight: 26 pounds
head circumference:  barely touching the bottom of the charts (but on the charts nonetheless)
seizures: none :) yay!
fed: G Tube, blended diet, off night feeds
voice: no words yet but babbles constantly
favorite things: bouncing in jumpers, books, music, laughing, his silky blanket, his binkie, when daddy tickles his neck, the sun and wind, the wheels on the bus song and our lullaby we sing him.

Super Hero with his Super glasses
EYES & GLASSES: Today Noah wears glasses.  Cute blue round rubber glasses that make him look like Harry Potter in a way.  They wrap around his head and he doesn't seem to mind them at all.  This opened up a whole new world for him.  The first time Noah has ever really been given the opportunity to see everything around him.  He now will follow objects we put in front of him.  He will now turn his head to see his daddy coming through the door.  He will now let us try to spoon feed him because he can see the spoon coming at his face and it isn't scary anymore.  The best part...he is looking at us, in our you know how precious these moment are for us.  We waited two years for our son to see us.  Its a wonderful feeling.

Rx: He is still blind in his left eye but his right eye is a +4 far-sided so he qualified for glasses finally.  Every other time we went to see his eye doc he was sleeping, crying, or they couldn't get a good read on his prescription.  If you can, try to get your child in glasses asap if they do have a prescription.  It is life changing. 

HYPOTONIA (ARMS, TRUNK, and LEGS):  Noahs arms and legs are getting stronger.  He still wouldn't be signing up for a muscleman competition but we are seeing some major improvements.  His legs are by far the strongest part of his body.  He is now fully standing (totally supported) and prefers to be in a standing position apposed to sitting.  He still is not sitting unassisted yet. He still is in love with the door jumper but is totally too big for them and has since broke it a couple times.  We are in the process of ordering a Merry Muscles for him.  We purchased the infant size (too small) and will be upgrading to the special needs version here soon.  He is still wearing his DAFO leg braces most days and this helps him use his ankles the appropriate way. He wants to bend his right foot under his ankle when it is not being supported.  We try to correct this as much as possible.

His left arm is much stronger than his right and is therefore holding objects for extended periods of time now (around 5 minutes).  His grip with this hand is also very strong.  He can put weight through this right arm for around 30 seconds on his own.  His left arm is much weaker but his therapist likes to call this his "helping hand" instead of his "weak hand".  In the past month or so we have really seen his left arm/hand start to figure things out.  He can hold things for about 30 seconds with this hand now.  He can also lift this arm up at the shoulder where before he couldn't.  We practice with him daily on holding things and pushing weight through his shoulders, elbows, wrists, and fingers.  We are noticing some major progress.

His trunk is starting to really get stronger.  He still bends over hunch back style most of the time but he can and will sit upright.  He just does not have the endurance to hold it that way for very long.  This is what keeps us from being able to sit him in typical chairs, shopping carts, swings, ect.  He just doesn't have the endurance yet.  His abdominal muscles are getting really defined due to swim therapy and his lower back muscles are almost too strong, which is why it is so easy for him to throw himself backward.  His upper torso is the weakest part of his body along with his shoulders.  There isnt much we can do with him to build these areas.  Time is the only thing that will.  We will be patient. 

SITTING:  Not totally there yet.  He has about 99% head control but if you were to lift him from a lying position his head still lags behind.  He also gets really lazy in the sitting position and if he knows there is anything behind him (person, pillow, chair, ect) he will automatically throw himself back to rest on whatever might be there. He has this aversion to sitting forward and still throws his arms back behind him in both the sitting and standing positions to equal out the weight of his head and body being forced forward.  We are working on this one. Sitting aids and chairs are still a major concern for me and I have attempted/failed three times at making my own chair for him.  Still not sure what to do there that doesn't cost us a small fortune. We just ordered a Leckey Firefly seat in hopes this will allow us to bring him places easier than it has been with his wheelchair or stroller.

COGNITION:  We never really know what Noah is thinking but we usually always know what he is feeling.  He lets us know if he is sad, hurt, hungry, tired, happy, giggly or all the inbetween.  We have learned his own language through is sounds and the way he is acting.  Very much like an infant really but we have the advantage of the years of experience to let us know if we are going in the right direction with what he is needing.  We know he knows who certain people are for sure.  We know he understands when he has his favorite blankets vs any other blanket.  We know he understands his type of binkie he likes and we know how to make him laugh.  We have figured out how to calm him and sooth him and we have a good understanding of how much he can endure.  One that I think no parent should have to learn so quickly but it has been good for us in hospital situations.  I know he understands the difference between certain cartoons and types of music.  He becomes really chatty when there are many people talking around him or if the tv is he is joining in on the conversation.  We know stuff is going on in his brain but until we can communicate with him somehow we are not sure how to tap into a majority of it.  Now that he is seeing a little we will be starting with sign language here shortly. Hopefully once he can use his arms better maybe he will be able to sign one day too. 

Swim therapy
THERAPY: Noah goes to a clinic called Neuroworx twice a week.  One day he does swim therapy in the pool and the other day he does a machine called a Lokomat.  We call this his robot days.  When we are not doing the robot we have him doing balancing exercises on a vibration plate to stimulate his nerves and give him a lot of sensory input. Noah had an amazing family sponsor him and his time at Neuroworx.  Really the only way we have been able to take him there as often as we do. 

When we can raise enough money and get enough time off work we love bringing him to a clinic called Now I Can.  I say that Neuroworx gives him the muscles and Now I Can teaches his brain how to use those muscles.  It is a great system if/when we can afford to rotate the two. 

Other than this clinic we are still seeing our early intervention team monthly.  We see a PT, OT, and Vision therapist twice a month each at our home after work. Once Noah turns 3 we will be aged out of this program and he will then go into a special needs preschool.  I am getting nervous for this stage to be honest.

vibration plate
We still work with Noah daily but we no longer set aside specific amounts of time to use as "therapy" time anymore.  It got too hard on us after a full day of work.  We felt like all of our time spending with Noah as a family was doing therapy. We want him to see us as his parents not his therapists.  So now we incorporate his therapy techniques into daily life.  If we are watching tv we prop stand him or get him to sit using his arms and hands.  When we are in the bath we use tub toys for vision therapy getting him to look from one point to another.  When we are in the car we have him holding toys.  When we are getting him into his pjs or clothes we work on rolling or pushing himself up.  Our lives are so much happier doing it this way then forcing both him and us to set aside a certain amount of time daily just for therapy stuff. 

WHEELCHAIR vs STROLLER:  I am not going to lie.  We do not use the wheelchair all that often, if ever.  To be honest it is heavy and big and a pain in the butt trying to maneuver curbs or steps.  Trying to run a bunch of errands on a weekend with a wheelchair is almost impossible for us right now.  Since Noah is still so small we still use our Baby Jogger City Select stroller with a toddler support pillow to keep him positioned appropriately.  I know that we have to make the big transition sooner rather than later...especially since we have twins coming.  We just haven't yet and that is okay. Sometimes you have to do what makes you feel comfortable.  The stroller fits our needs right now.  He still fits in it right now.  It holds all of his bags and pumps perfectly.  And it makes our lives easier right now.  So that is what we are using for the time being and I am totally okay with this.

REFLUX: I can proudly state (and shout it out loud without having to knock on wood) that Noah is no longer an everyday pukey kid.  Yes, he still has his moments if we feed him too fast or if he gets too hot.  However, he has gone from losing it all many times a day to going weeks between bucketfests.  Our laundry, carpet, and sanity can actually see the light of day again.

Rx:  Noah is currently still taking Zantac twice a day (noon and night) at 2.7ml.  


chewy tubes
Orally: Now that Noah can see us coming at him with a spoon or food he has been more accepting of taking things orally.  We are averaging about 1-2 ounces of food a day orally.  A major improvement for him is texture.  He is now eating about 2 crispy veggie stix a day and that takes a lot of oral motor control to chew and swallow without gagging or throwing up. Tongue lateralization is our current feeding therapy task we are working on.  Being able to bring food from the middle to the side of your mouth and then push it back to be able to swallow it.  Things you and I do without thinking but takes about 5 minutes for Noah to master with each nibble.  We are transitioning him off the binkie and in its place have really been pushing all kinds of chew toys and tools to still give him the oral stimulation he needs to keep his mouth wanting to work. 

Yum! Pie!
G-Tube: Noah is still fed 100% via feeding tube (g tube) into his stomach.  He is off all formulas and we have been successful with the blended diet now for many months.  It was a hard learning curve but with the help of a dietician, facebook groups, and family we can finally call ourselves blending pros.  After much trial and error we have a simple process that works for my husband and I and our full time work schedules. We blend every other day which make two days worth of meals him in 20-30 minutes. 

Each meal consists of (recipe changes every time but here is a basic one):
Serving size: 2 days worth
Serving: 8 oz meals 4x day
Calories:  ~1000-1300 daily
Free water: 1 oz flush after each feed and 2 oz bolus an hour before each feed and again before bed

  •  6 Tbsp hemp hearts
  •  4 Tbsp flax seed
  •  2 Tbsp flax/olive/ or avocado oil
  •  4 Tbsp organic Peanut Butter
  • Handful of raw spinach
  • 5-7 mini carrots
  • one full cored apple
  • 1-2 mini cucumber
  • 1 full avocado (peeled and pitted)
  • 2 skinned kiwis
  • one full bag of steamable frozen vegetables (if we dont have any fresh stuff made)
  • one pack of Carnation Instant breakfast (if I need more calories)
  • various baby foods like sweet potatoes or prunes (if I need more calories)
  • 2 ounces of carrot juice or GoodBelly juice
  • 2 cups of rice milk
  • one full flinstone multi vitamin
  • one 400 IU Vitamin D 
  • 2 tsp. powdered refrigerated probiotic you can see Noah has made some great strides over this past year.  We have learned so much as his parents and continue to do so daily.  He makes us smile every morning and we are still lucky enough to get good night snuggles every single night.  I am so proud of all that he has accomplished and is continuing to accomplish.  I am also proud of both myself and my husband for tackling this adventure together and figuring things out as they come.  Being a parent is scary no matter if they have special needs or not.  There is constant worry, constant guilt, constant questions, and always a dash of exhaustion.  Small things in comparison to all the wonderful moments that come out of even the hardest of days.  I will try to continue to post updates but like I said...Life happens and some times you just have to go live it! :)