Noah is THREE!!!

Big Brother Noah with his baby sisters Maddy and Ellie

We have a Preschooler...yikes!

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

Summary of our past six months:

Due to lack of time and ease of updating by blog I have copied Noahs two year old update post and filled in everything for his current age and stage in life.  

We have had a really really really good year.  Where do I even start?  I guess it all started when Noah got glasses in December of 2013…things just started to happen after that.  Not really sure if it was the glasses that did it, but that is the moment I can remember when we really started to see Noah make some great strides. 

Noah turned 3 on November 10^th (yesterday).  It was not the birthday I had hoped for as our Noah came down with a little bug of some sort.  Today was supposed to be his first day in preschool but again…his fever kept him home.  We never really know what is going on when Noah gets sick.  He cannot communicate yet to tell us if it is his stomach or ear or something else.  We have noticed that for some reason he responds really well to Ibuprofen and Tylenol does absolutely nothing for him.  The problem is that it only helps him for about 2 hours and then we have to wait another four hours for another dose to help with his fever or aches and pains.  It still takes Noah many days to get past any form of sickness and that does take its toll on us sometimes.  Hoping for a very good winter (fingers crossed).

We do not like when Noah gets sick

 

Noah became a big brother to two little sisters this past July.  At first he didn’t care for their cries and loud sounds but over time he has acclimated. I can see a big change in him since their arrival.  Some good some bad.  He is visually attending more to them which is wonderful to witness.  However, he has also become really sensitive to noise and the fact that we have three kids to care for now instead of just him.  He has had to learn to sit next to us while we feed his sisters and sometimes he just wants our undivided attention.  This happens to be a very “normal” issue that all parents with multiple kids experience and as sad as it makes me when Noah starts to cry, I keep telling myself that he is crying because he wants me or daddy and that means cognition, emotion, cause and effect, and understanding! 

Ellie and Maddy Love their big Brother Noah

NOAHS CURRENT STATS:

Length: 42inches

weight: 30 pounds (finally put on some weight)

head circumference:  3^rd percentile  

seizures: he has been having some “episodes” but neither his Neurologist or GI doc know what they really are and there have been so few that they are not treating them right now.  They always happen when he is asleep and always after a meal.  

fed: G Tube, blended diet, water at night, total regression in feeding therapy.  Back to small tiny tastes of puree food with TONS of bold flavors.  No more oral aversion but he can’t swallow for some reason.  

voice: no words yet but babbles constantly (especially at 3am)

Favorite things: bouncing in jumpers, books, music, laughing, his silky blanket, his binkie (yes…he still has a binkie), when daddy tickles his neck, the sun and wind, Cartoons, his guitar toy, going over train tracks, crossing his legs or lifting one leg up and grabbing his foot, standing upright totally assisted, swimming, pushing up on his hands and scooting backwards (this is new), and chewing on anything he can get his hands on.    

EYES & GLASSES: Today Noah is attending to objects.  Not for a very long time but he is moving his head towards people coming into a room or leaning back to look up at me while in my lap.  He loves to watch cartoons with their bright colors.  He loves looking at trees.  His CVI is starting to improve in his right eye and when he had his preschool assessment they listed him at a 6 out of 10 for CVI improvement. This is fantastic news!  His left (blind eye) is starting to deteriorate at a slow pace.  He has a detached retina in that eye but since he is blind they will not fix it.  This has caused scarring in his pupil and if you look closely you can see his pupil is starting to turn silver.  They said it could take 2 months or 20 years for his eyeball to completely die and need to be removed.  A prosthetic eye will take its place at that time.  When he is older and if we choose to we can get a contact lens to put in that eye to make it look like his other eye.

Noah is an eye poker.  I HATE it!  He will take his thumb and dig it into his good eye.  This is purely for stimulation and out of habit.  We have to put a no-no brace on his arm so that he cannot bend it and reach his eye.  He sleeps with a no-no on his right arm most nights to prevent him from digging at his eye.  Only time will help this if we can break his habit.  

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 opposed to sitting.  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 ordering a Merry Muscles for him but returned it as the baby version was too small and the adult special needs version too expensive.  He is still wearing his DAFO leg braces most days but only when he is jumping or walking in the Lokomat. 

His grip with this hands has improved a lot.  He can hold small objects now for a very long time and can even pass from one hand to another.  Major improvement since last year.    He can put total weight through both arms now and will do a “girl push up” all day long if we let him.  This is another massive gain this year.  We are working on him being able to pop up on his knees.  Still lacks the strength and balance to get into the crawl position on his own.  If we put him directly into the crawl position he can hold it unassisted for about 30 seconds and then crashes forward.  

His trunk is starting to really get stronger.  He still bends over but now he will sit straight upright a majority of the time (another improvement).  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. 

GoTo Seat by Leckey

SITTING:  Noah can sit unassisted propped on his arms for a whole minute now (another huge improvement).  He has 100% 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….but getting much better at not doing this this year.  Sitting aids and chairs are still a major concern for me. We have a Leckey GoTo Firefly seat but he is still a little short for the bigger version we ordered and Noah still wants to lift his pelvis and slide it forward when sitting in it which makes it hard for us to use in restaurants.  Once we can master his pelvis to sit in a 45 degree angle without wanting to slide forward then I think our world will open up on what we can do and where we can take him. 

The best chair we have found for Noah is a basic Lazy boy chair (thank you Cox family) always in the reclined position.  Noah can sit in the corner of the chair safely without falling out.  No need for straps or belts, and the seat is big enough to hold toys and keep him entertained while we feed his sisters or read him stories. It is also made of micro fiber which is SO easy to clean and boy do we have to clean it daily from his gtube spills or other messes kids make. 

Trying out the Upsee Harness

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 in between.  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 loud....like 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.  

Update: all the above is still true but this year we have been working on getting him to take his hand and pound his chest when it is “his turn” for a toy or kiss or spoonful of something.  About three weeks ago he did it on his own when it was his turn for the ball to be rolled to him.  It was a glorious day for us.  He has done it a couple times since but it is still not regular yet.  Part of his preschool goals is to get him to learn the signs for More, Come here, and still work on My turn.  We have to limit the signs we teach him since he still cannot use his fingers and his arms still are not really coordinated.  

THERAPY: Noah aged out of Early Intervention yesterday and it was a very sad time for us.  We loved our EI therapists and are so sad to see them go.  Noah still 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. We are currently looking into other PT options through our insurance now that we have to go private after EI.  

We unfortunately have not been able to come up with enough money to get back 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.  Hopefully in another couple years once Noah has gained some more strength we will be able to afford to go back to Now I Can.  

Still the same this year: “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.  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.

Valco Baby Twin Stroller with Toddler Attachment seat

New Bug 2 by Ormesa

Update: Yep…wheelchair still just sits there in our house.  He still fits in the City Select and we just got a new SN stroller off of ebay for him that we are going to try out. It is the New Bug 2 by Ormesa. I got a really good deal on it but had to spend just as much buying an abduction block and five point harness since it was used and didn't come with those. Pretty dang cool chair though and we still prefer this over his wheelchair.  Not sure why we dont care for his wheelchair...just don't I guess.   Since the twins were born we have also started to use a Valco Baby twin stroller with a toddler seat attachment. Noah cannot sit in the toddler seat for more than 30 minutes but we have learned to tilt the toddler seat back and put one of the girls in that part and have Noah sit in the stroller seat so that we can push all three at the same time (we have nicknamed this stroller our suburban). Noah once again slides forward with is pelvis in this toddler seat so we have to use our Hugga Bebe pillow (no longer sold in the market) to keep him secured in tight.  You could use any type of pillow to do the same.

REFLUX:  This is an area Noah has totally regressed in.  He throws up almost daily if not every other day.  His doctors think it has to do with his reflux, his hiatal hernia that is too small to fix, and his sensory issues. He cries...he throws up.  He sits wrong after eating...he throws up.  He is not feeling good…he throws up.  He gets lifted too fast from the floor…he throws up.  No matter what we feed him, how we feed him, or when we feed him he throws up.  Its bad…really bad and I hate it.  We have seen all kinds of doctors about it and they have all come to the conclusion to just wait until his core gets stronger and hopefully getting older will help.  We keep hospital puke buckets in every room, car, and even a small one for his stroller.  Its sad really…and messy and embarrassing. 

Rx:  Noah is currently still taking Zantac twice a day (noon and night) at 2.7ml.   He also is on a compound version of Prilosec once a day at a dose of 1 ml/15 mg. For GI Motility he is taking Erythromiacin 1-2x daily in addition to 1.5 capfuls of miralax daily.  

NOAHS EATING:

Orally: Noah will accept anything into his mouth but he just will not or can’t swallow it.  He loves bold flavors like fajitas and green chilis or sour cream.  He loves the cold texture of jello and his favorite food is still re-fried beans…but he just wont swallow any of it.  He has learned to swallow small drops of water from a syringe but still cannot drink from a bottle, cup, straw, or sippy.  He chews on chewy tubes and toys all the time and yes he still has a binkie as it is literally the only object he will wrap his lips around so we keep it so that he can practice lip formation, closure, and suction.  Also…he just really calms down with it and we use it during therapy so that he will focus.  We are past the point of caring what people think when they still see him with a binkie.  Even his speech therapist has told us it benefits him more than it is hurting him. His dentist of course wants him off it now.  There is a whole “binkie debate” in the SN community.  Its actually kind of funny. 

City Select Stroller

G-Tube: Noah is still fed 100% via feeding tube (g tube) into his stomach.  We have had to change up his feeding regiment more times than I can count.  We have met with many dieticians and tried everything to see if it would help with his lack of weight gain and his throwing up.  Nothing worked.  Well, that was until recently when I threw in the towel and had a melt down and decided I was too exhausted taking care of newborn twins and making Noah these really expensive ultra healthy meals to have him throw them all up within an hour and have to scrub carpets or chairs daily.  In the midst of a really bad day I posted on facebook asking all of my family and friends who have “typical” toddlers what they ate and drank, how much, how often, and if they actually ate all of what was given to them.  I then reached out to many coworkers asking the same question.  I received comments or meal plans from over 40 of my friends, family members and co workers and realized that NONE…NOT ONE of them were feeding their toddlers expensive ultra healthy meals every single day for every single meal.  So I switched things up and my sanity has been saved.  

From that day forward I changed everything I was doing for Noah meal wise.  No, it did not help his throwing up but nothing ever did.  He doesn’t throw up any more than before but he has put on weight and kept it on and that is a win for us.  No GJ tube for Noah now which I keep thinking would have been a nightmare for our family right now.   

Plain and simple Noah gets breakfast, snack, lunch, snack, and dinner.  If he does not keep in all of his meals during the day he gets a water drip at night through his feeding pump.  Each main meal is 6-8 ounces total and his snacks are 4 ounces total.  For breakfast he gets eggs and bacon and toast or the like on weekends when we have time to cook and oatmeal or cereal during the work week.  Always with half a banana or other fruit and always with some rice milk since we still are off Dairy Milk.  His lunch is always some type of sandwich with some carrots or cucumber or avocado or salad.  His snacks are always some type of applesauce or pears or peaches mixed with flax seed or hemp hearts or some other kind of grain or protein.  I have even done string cheese or cottage cheese with peaches or even goldfish crackers and apples.  Typical toddler snacks.  Dinner is always whatever we ate for dinner.  I'll throw in a half of a multivitamin in his breakfast, half a vitamin D which he needs in his lunch, and some probiotics in his dinner.  

I no longer calorie count but I do try to keep main meals around 300 calories each.  I no longer take hours making blended meals.  I actually no longer use a vitamix blender.  I now just use a nutribullet and blend each meal up as I make them for the day.  He actually eats breakfast during breakfast time and so on and so forth.  Who knew it could be that simple.  No more freezing or searching for high calorie additives.  No more crazy concoctions.  Just typical food a typical toddler would eat but blended. 

Calories:  ~1200-1600 daily depending on how he is feeling or if we had a big therapy day

Free water: 1 oz flush after each feed and 2 oz bolus an hour before each feed

Since switching up his meals I have also stopped using the pump during the weekends as well and bolus feed him with an o-ring syringe.  I have found the Mic-Key extensions that are not angled and do not have a med port work best since the tubing is wider than the AMT extensions and syringe port actually secures around the O-Ring syringe.  The O-Rings work better since the tips are narrower and fit better in the port.  Also, they slide easier than cath tip plunger syringes I get through insurance.  We still use his pump during the week at daycare and at night if he needs more water.  It sure has been wonderful not having to lug that pump around with us all the time and the beepers and buzzers are not missed at all.  

This past year has been crazy busy for us (hence the lack of blog posts).  Helping Noah reach all these new milestones has been no easy task so we spent all of our time helping him before the twins arrived.  Being pregnant with twins also didn't help with my energy levels either.  Now that the girls are a few months old and sleeping a little bit more.  Now that Noah has acclimated to his new sisters and has found some ways to entertain himself and become more independent.  We hope to see many more accomplishments from our big boy and I can't wait to share them with all of you.  Hopefully you wont have to wait for his fourth birthday :)