This week Colton turns 4 years old! I’m writing down
this blog update to remind my future self what life was like when Colton had
just turned four and was still an only child, but not for long!
New
House and a New Baby
On June 20, 2016 we closed on a new house! Colton’s three
favorite things about the new house are (1) the pool, (2) the stairs and (3)
the big backyard. He would prefer to be swimming, climbing or running at all
times, so these new digs fit him just fine! On the day we closed, we also
learned that Colton was going to be a big brother! His baby sister is due in
February 2017. As we prepare for a new baby in the family, Colton was upgraded
to a new big boy room and now sleeps in a twin bed! He has a little set of
stairs to help him get in and out of bed and a toddler rail to ensure he
doesn’t roll off in the middle of the night. He has adjusted beautifully to his
new bed, only falling asleep on the floor a handful of times and generally
staying on the end where he can’t fall off!
Health
On Easter and Patrick’s birthday (March 27, 2016) Colton
got a chest x-ray and they determined that he had bronchitis/early pneumonia
and was started on antibiotics. He went back to ER the next day for a breathing
treatment and steroids. And in late December, his chin met some tile floor and
ended up with a gash that required 3 stitches. However, other than some minor
croup cases and a passing virus or two, Colton had a relatively healthy year
and we are so thankful for that!
Seizures
According to my records, Colton had a total of 12
seizures in 2016. Although 12 may sound like a lot to some, it’s an incredibly
low number for most people who have seizures and I’m so thankful that in 2016,
he didn’t have any seizure clusters due to sickness. (He had 18 seizures in
2015, 13 seizures in 2014 and 3 seizures in 2013.) Of the 12 seizures in 2016,
I would categorize at least 9 of them to be called “Partial Complex Seizures”,
which means that the seizure starts in one part of the brain. The symptoms are
subtler, like even though his eyes may be open and he can make movements, he
loses awareness and stares blankly. He does not lose complete consciousness.
Sometimes these seizures turn into a ‘generalized’ seizure, which means the
whole brain is involved, and that’s when he might lose consciousness and have
rhythmic body movements like in a typical tonic-clonic seizure. I think only
one of these seizures was a true “febrile tonic-clonic seizure”, which means in
response to a high fever. The average length of seizures was 3-4 minutes each.
I think that we are starting to see less seizures in response to sickness as
Colton gets a little older. There are less ear infections and less daycare
viruses in our life right now, compared to when he was 1 or 2 years old.
However, we are continuing to see seizures as he gets taller and gains weight,
so I think that is an inevitable thing for the time being as we continue to
adjust medicines to control seizures as he grows.
Medicine
Colton was taking Onfi as the only seizure medication for
about 15 months, which is really amazing to only be on one medication for that
long. When Colton had 4 seizures in about 3 weeks in November 2016, we added
Keppra, another seizure drug to his regimen to control seizures and he has
remained seizure free since we added it! In late December 2016, we added
another new drug called Sinimet. Although it’s traditionally used in patients
with Parkinson’s Disease, it’s possible that it’s dopamine promoting
capabilities could help Colton improve some cognitive function. At this time,
it’s kind of a trial run. It was recommended to us by another family who saw
improvements in their son who has a similar genetic mutation as Colton and our
neurologist approved of us giving it a shot. Like with any new medication, we
are always keeping our eyes open for side effects and trying to weigh the
benefits versus any negatives. Colton also takes Zyrtec and Melatonin each
night before bed.
Therapies
When Colton turned 3 years old, the at-home therapy
services through ECI ended. In February 2016, we started Applied Behavior
Analysis (ABA) therapy for 20 hours a week. We decided to focus all our
attention and energy on ABA, from 9am to 1pm every week day, while keeping nap
time in the afternoons. Although part of my job had always been chauffeuring
Colton to and from therapies, it was time to make it my official job title. In
March 2016, I left my part time work position to stay home full time with
Colton. After moving cities over the summer, we enrolled Colton in the
Preschool Program for Children with Disabilities (PPCD) at the local elementary
school. With that morning preschool program starting in August 2016, we moved
ABA therapy to fill the afternoons and therefore dropped nap time. That was a
big transition for Colton, to full days… 3 hours of preschool and 3 hours of
therapy every day, with no nap. Luckily, he is sleeping almost a full 12-13
hours at night due to the long days! At the preschool program, Colton receives
Speech Therapy (2x every 1 wk), Occupational Therapy (1x every 2 wks), Physical
Therapy (2x every 3 wks) and Assistive Technology Therapy (7x every 9 wks). At
the ABA location, Colton also receives Speech Therapy twice a week. As the
spring semester starts in 2017, we are looking to add some private Occupational
Therapy and also interested in adding Hippotherapy (therapy using equine
movement).
Development
Colton can walk and run and would prefer to be running!
However, he still has a bit of an awkward gait and falls and trips more than
the average 4-year-old. He loves stairs and practices going up and down at our
house every day. He’s just now starting to be able to hold onto the
railing/wall and slowly go up or down on his feet. For many months it was
crawling on all fours going up and sliding down on his booty coming down.
Colton has started using “buttons” or “switches” at home and at school to
indicate what he wants. At school, he pushes a “big mack switch” which says out
loud “MORE” to indicate he wants more of an activity (usually bubbles). At home, he pushes two
different buttons, one for “EAT” and one for “STAIRS” to tell us what he wants.
Otherwise, he communicates by taking your finger and pulling you towards what
he wants, which at home is mostly the TV or outside. He verbalizes plenty, but
does not have any words. We recently added “Assistive Technology” services at
preschool and we are looking forward to utilizing the iPad and other technology
in the future to encourage other types of communication for Colton! He still
needs a lot of oral sensory input, and we try to encourage using a chewy necklace,
rather than putting clothes, objects or his hands in his mouth.
DYRK1A
Community
Colton received his genetic diagnosis (DYRK1A-related
Syndrome) in September 2015 and we quickly found a Facebook group that had
other families of loved ones with DYRK1A changes. As of today, there are
upwards of 80+ families in the facebook group and it seems like more are added
every month. In July 2016, the first annual family gathering was held in
Cincinnati, OH. We traveled there for the weekend to be a part of the event and
to meet other individuals like Colton. It was a wonderful event where we met 9
other families who were just like us and who had family members very similar to
Colton. It’s also where we learned about the TIGER Study, a study that Colton
will be participating in this upcoming year, which focuses on certain genes
changes and how they are related to Autism. We also joined the Simons VIP
Connect online research family, in an effort to provide as much information to
researchers and doctors as more becomes available about this DYRK1A gene. We
hope to continue to participate in the yearly family events and have so enjoyed
having the online community available to us.
Favorites
Number 1 favorite continues to be water. He loved
swimming in our new pool over the summer and still loves bath time. He loves to
climb stairs. He loves to listen to music on his CD player in his room. His
favorite toys are still cause-and-effect types, where hitting a button plays a
song or lights something up. He loves any type of ball or ring that makes a
good noise when thrown onto our hardwood floors. He really enjoys bead maze
toys and has one in his room and in the car that keep him entertained. One of
his favorite activities at school/therapy is bubbles! He continues to love to
snuggle and tickle with mom and dad. And he really enjoys when daddy throws him
around, spins him around, holds him upside down, gives him piggy back rides and
the list goes on. He loves watching the dogs and grabbing their tails (his
favorite is still Ranger) and he giggles so hard when he thinks they are
chasing him. He still sleeps with his beloved (empty) bottle, it continues to
be the ultimate comforting thing for him (and helps him sleep 12-13 hours at
night!) Favorite foods are protein balls
and cheerios. Favorite shows are Mickey Mouse Clubhouse and Handy Manny.
Favorite movie is Cars.
Personality
Colton has dealt with a lot of change in 2016. A new
house and new bedroom, along with an entirely new schedule for school and
therapy. Although he thrives and learns better with consistent routine, we are
so lucky that he adapts so well to new people and new situations. Most days, he
walks right into school/ therapy/ church with no fear and no separation
anxiety. He is certainly opinionated and would much prefer to be doing his
favorite activities like watching a TV show or playing with a favorite toy. One of
his defenses is to act tired and uninterested when he is bored. He shows the
most affection to mom and dad, enjoys snuggling in their bed or sitting on
their laps to watch TV. He gets cranky or fussy when we have to tell him “no”
to something he wants, but he does not typically have any meltdowns or
tantrums. Again, we are lucky that his personality is relatively laid back and
go with the flow at this time. On a normal healthy day, he is easy to be around
and he finds joy and happiness in his favorite things!
Colton is a such a special kid and he is so loved by his mama and daddy and all his extended family too. The blessings are almost too many to count! We are looking forward to this next year where Colton will learn what like if like as a big brother!
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