The cardiologist also has no concerns for Ben’s upcoming dental surgery regarding the anesthesia.
Ben was nervous for the appointment, but he did great!!!
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Here's what freshman year looks like so far! The boys are focusing on academic, social, life, and job skills.
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They are two of the neatest people!
For fall activities for the boys, Ben participates in Special Olympics bowling.
This is his second year of bowling. We saw great improvement from last year.
He is learning to keep the ball down the middle of the lane. He is also almost completely independent while at bowling: he pays for his game, puts on his own shoes, and knows when it's his turn to bowl. He acts very appropriate while bowling: he sits quietly as he waits for his teammates to bowl, he politely communicates to someone if they are blocking his way to get to the lane, and he even has some conversations with his teammates.
We are so proud of him!!!!
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My mother’s youngest sister Audrey had Down syndrome. She was born in 1934 so things were very different back then for people with Down syndrome. Parents were often encouraged to have their children institutionalized because there were not many supports in place to help them parent their child with Down syndrome.
For parents, like my grandparents, who chose to keep their child at home, they were often on their own in supporting their child. Resources like special education departments, physical, speech, and occupational therapy were either not present or very difficult to access.
My mother and Audrey were 18 months a part in age. So my grandparents, who were recent immigrants from the Netherlands, sent BOTH girls to the small country school on the first day of kindergarten for my mom.
Keep in mind, these 2 little girls lived in a house where Dutch was the primary language while the family was learning English.
At the end of that first day of kindergarten, my grandparents were told not to bring Audrey back to school. They didn’t know how to teach her.
That was the only day of school Audrey ever attended.
Audrey spent her childhood and young adulthood at home with my grandmother. Incredibly though Audrey was able to understand English and Dutch.
Fortunately, as her life progressed, so did advancements in special education. There became more opportunities for people with intellectual disabilities. Because of this Audrey went on in her adulthood to have a “job” through RCS- a disability services and support organization in our area.
As a child, I remember being told Aunt Audrey made one Brillo pad a day- not sure if that’s accurate, but it wouldn’t surprise me if her great nephew Jonah had a similar workload someday😊 Jonah loves fun a little more than work-haha.
When I told our boys about my Aunt Audrey only being able to attend school for ONE day, their eyes got very big. I think they realized Audrey's one day of school is a very different experience from their education.
Jonah and Ben have had amazing opportunities these past 15 years.
1. Jonah started speech (feeding), physical and occupational therapies at 3 weeks old!
2. He started school at 3 years old in our school’s Early Childhood program.
3. Our Ben was brought immediately into our school system when he arrived at age 6 from Lithuania. Our school stepped right up and helped bridge the gap for a little boy who had never had any therapy his first 6 years. He was still learning English. Yet our school surrounded him with all the supports and services possible.
4. Over the years, we have benefited from the hard work and dedication of the school teachers (both special education and general classroom), therapists, support staff, and administration.
5. As well, we’ve also had great therapists outside of our school system through private speech and physical therapy.
6. And beyond the classroom, the boys have been welcomed, encouraged and supported to participate in extra curricular activities at school: football, esports, and the school play. The overall attitude always seems to be “How can we make this work” instead of questioning if it will work- big difference!
7. Also beyond the school classroom, the Sunday school teachers at our church are open and willing to make the Sunday school lessons adaptable to the boys’ level of understanding.
So looking over this list, we definitely have a lot of gratitude in our hearts. We are very thankful for each person who has played a part in our boys’ education journey. These boys always seem to land in sweet places. We pray this will continue to be their experience in life.
So much more than one day!
First of all, I think it is amazing that after being with us for 9 years, this is the first time I felt the need to even record a health history for Ben! The kid is built like a tank and rarely gets sick and has very few health issues.
Having said that, besides needing dental surgery in December, there is nothing serious going on with Ben that is necessitating me starting this health history. He continues to be very healthy.
However, it helps my "old mom" brain to summarize things so I think it's good for me to have a record of what's going on with Ben health wise.
Ben had surgery at 18 moths old (2012) in Vilnius, Lithuania for VSD, ventricular septal defect.
September 2016 to current
From his very first cardiology appointment here in Wisconsin in September 2016, our cardiologist has been very impressed with the quality of Ben's heart repair that was done at the Vilnius Children's Hospital.
For the first few years he was home, we saw the cardiologist every year, but now we see him every 3 years. This shows how great Ben is doing!
"Hypothyroidism results from a faulty thyroid gland. The thyroid gland is involved in controlling how quickly the body uses energy, makes proteins, and regulates hormones. In hypothyroidism, the creation of the hormone thyroxin is decreased. Thyroxin is the hormone that promotes growth of the brain and other body tissue. Hypothyroidism is the most common endocrine problem in children with Down syndrome." (National Down Syndrome Society)
Ben's hypothyroidism has been very easy to treat by taking levothyroxine daily. The only challenge during his growing years is he needs blood work every 6mths to make sure he is at the right medication level. Once he has finished growing, he will probably switch to yearly blood work.
9-29-25
Now, bad mom confession. In November 2024, Ben had a virtual 6mth endocrine checkup. From there, I forgot to schedule his 6mth checkup for May 2025. So Ben has not had blood work in 12mths. He is schedule for blood work/checkup this November.
This goof-up on my part may lead to the current dental issue Ben is currently dealing with.
Ben had his 6mth dental appointment yesterday.
For the most part, Ben has always had great dentist appointments. He has no cavities. He has had some plague buildup at a checkup here or there over the years, but nothing that has happened consistently. The message I usually leave with at these appointments is that things look great, and we should continue with whatever we are doing.
But yesterday, Ben's teeth presented very differently. Ben had lots of plague buildup. The dentist also indicated that Ben has some bone loss in one area of his gums. This means the disease has progressed past the first stage (gingivitis).
Click HERE for info about gum disease
Now the plan for treating Ben's periodontal disease. Ben will need to have surgery under general anesthesia in order for the dentist to pull 3 baby teeth (blocking 2 adult teeth from coming down leading to a prime place for bacteria to gather) and to have scaling and planing (deep cleaning of the gum). Hopefully, this surgery will help rebuild the bone and tissue.
I'm guessing this would be too much for him to handle under local anesthesia which is why he will be put under.
I'm very confused how Ben's teeth could have gotten this bad in the past 6 months. I confess we don't floss Ben's teeth, but we never have flossed, and as I mentioned earlier, he never had serious plague buildup. The dentist did explain this is probably the result of many factors besides just poor brushing: puberty, genetics, and Ben's hypothyroidism (can increase the risk of gum issues). So many pieces to this puzzle.
Of course, mom guilt has me worried the thyroid piece of this puzzle might be a factor because perhaps Ben's medication level has been wrong for the past 12 mths.
However, when I reached out to Ben's endocronologist, she reassured me that Ben's hypothyroidism has been well-controlled over the long picture so she doesn't think that would be causing problems with his teeth. This leaves poor brushing habits (now that he's heavy into "teen angst"), genetics and the make up of his adult teeth vs. baby teeth. That did relieve some of my mom guilt...
Dental surgery set for 12-5-25.
11-7-25
Ben had is 3 year heart echocardiogram and visit with cardiologist today. Everything continues to look great from his repair done at 18 mths old.
The cardiologist also has no concerns for Ben’s upcoming dental surgery regarding the anesthesia.
11-7-25
Relief! Ben's labs are in normal range, despite not being checked for 12mths. Usually we check every 6 mths.
Ben's dental surgery happened on 1-5 (had to be rescheduled from 12-5), and it went very smoothly. The mystery is somewhat solved as to why Ben all of a sudden got infection in his gums when he's always had great dental checkups. The dentist thinks the 3 baby teeth that were refusing to come out was causing a great place for bacteria to build up. Now that these 3 teeth have been pulled, she is very hopeful Ben's gums will get back to their usual healthy again. That was a relief to hear.
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