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| 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 10th
(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).
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| 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!
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| Ellie and Maddy Love their big Brother Noah |
NOAHS CURRENT STATS:
Length: 42inches
weight: 30 pounds (finally put on
some weight)
head circumference: 3rd
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.
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| 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.
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| 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.
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| Valco Baby Twin Stroller with Toddler Attachment seat |
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| 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.
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| 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 :)
Hanging Porch/Camping Swing: We actually took off the leg rest and cup holder, screwed a couple eye bolts into our ceiling and then hung this chair for Noah. We then tilted it back further than normal and I then took a piece of fabric and sewed it to fit horizontally from one arm rest bar to the other to make a safety feature to cover up the side holes so Noah couldn't roll out of the chair. He loves this swing. Its big enough to be safe for him and it didn't cost a fortune (actually ours was a gift but if you were to buy it, it isn't that bad). 
Sassy Doorway Jumper and Baby Einstein Floor Jumper: I like these brands
because they are built strong and work for Noahs body type and abilities. The doorway Jumper has a really secure
door frame locking clamp and the actual seat is built wider and deeper
than other brands I have found. Also, I like the four rope design
rather than the three so Noah doesn't keep leaning back on the ropes.
Also the leg holes seem bigger than most and makes it so his legs can be
closer than other models and not so bull-legged. Noah is way beyond the weight requirements for these baby devices but with caution we still use them as they are the only independent activity Noah can do. Also, I should warn that he has broke a few of the door jumpers getting wild and crazy and again..because he is just too heavy for baby jumpers now. We keep buying them though as he loves them so much. The Baby Einstein floor jumper is great for him too even though once again he is too big now for it. It has different levels and I love that he can put weight through his arms while in this and has taught himself how to turn around in circles while in it. Plus, the music is actually enjoyable on this baby device. 
