Colton is 4 years old!

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!