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JONAH'S HEALTH HISTORY

Thursday, December 4, 2025

IT'S BEGINNING TO LOOK A LOT LIKE CHRISTMAS


In the inside

And the outside!

We had a great Thanksgiving weekend: 
good food and great fun.

We are all decorated for Christmas, and we have a good 6 inches of snow.  Our past few Decembers have been brown.  Hopefully, this December continues to stay white.

The boys have hit their groove in school after a bit of a shaky start.  They are working hard (most of the time), and their behavior is quite appropriate at school (most of the time).

Ben and Jonah continue to love being uncles to their nephew.  And thankfully, Baby J loves his uncles!  He is very entertained watching and listening to them.  He gives them many smiles and often babbles to them.  
It's very sweet to watch.

Jonah is going to start occupational therapy outside of school.  School did not want to add OT back onto his plan so we decided we would pursue the help privately.  We are working on the goals of safety with life and job skills and how to interact safely with babies and children.  Jonah loves to show affection to Baby J, but he is not always able to grade his strength when giving hugs or touches.  We are very excited for this additional help for Jonah.

The boys start Special Olympics Basketball skills in February.  We are grateful for this time off since football and bowling/Esports are done, but we are excited for them to be able to have a winter activity.

The boys continue to be super healthy except for Ben's dental issues which will hopefully be fixed with January's surgery.  

They are strong and smart young boys- so much to be thankful for!



 

Friday, November 7, 2025

HEALTHY HEART CHECK!

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.

Ben was nervous for the appointment, but he did great!!!

Friday, October 31, 2025

IT'S FALL Y'ALL

 


Annual trip to the Pumpkin Patch

Lots of excitement for our Milwaukee Brewers

Final camping trip of the year at Calumet County Park

Campsite right on the water

Great way to end our camping season!







SCHOOL DAYS

Here's what freshman year looks like so far!  The boys are focusing on academic, social, life, and job skills.

Before we get into the school day photos, I have to brag about Ben.  The boys are in the concert choir at school.  The other evening they were in the performance "Rockets on Broadway".  This involved singing and DANCING for two numbers.  Jonah, for all his love of music and dancing, actually gets stage fright and just stands there barely participating.  But Ben, to our great surprise because this doesn't really fit his personality, was up on stage singing and doing all the choreography!  Why didn't I video this you might ask?  Because I was so shocked it was happening that I barely got a photo of it.  I was so happy and proud of Ben to see him working hard and putting forth so much effort.  It was a really fun night!

Now the school stuff:



Cleaning the Fitness Center


Doing laundry for the Fitness Center


Learning to make their own lunches




 

FALL SPORTS

Fall has been busy for these two guys.  

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!!!!  

Ben also continues to be on the Esports team at school, but I don't have any photos of him- I don't want to be that kind of mom :)

Right down the middle


Jonah is on the junior varsity football team.  He attended one practice each week, suited up for home varsity games to cheer on his team, "played" in the home junior varsity games on Monday nights, and joined his team at then end of game and say "good game" to the opposing team.  

His participation in a game is just like last year for 7th/8th grade football.  At the beginning of half time, one more "play" is run with Jonah getting a handoff and taking it in for a "score".  Somehow, the way is always completely clear for him to get thru :). 
 
We are very thankful for the willingness and cooperation of our coaches and players, the opposing team, and the officials for letting this happen for our guy.  

We can't say enough about our coaches and how open they have been to include Jonah on the team.    

My observation of Jonah being able to play football these past few years is that joy and happiness is not just experienced by Jonah and our family.  I have had coaches, parents, fans, officials, and Jonah's teammates tell us that it is so cool to come alongside Jonah and help him play football.  We are very impressed by the kindness shown by Jonah's teammates.  These guys have helped Jonah with his helmet, shown him how a water bottle works, guide him on what to do during the national anthem, play catch with him on the sidelines, run drills with him, and one of them may even have helped him with a runny nose.  And of course, many of the guys have danced on the sidelines with Jonah!  

It's pretty neat to see inclusion at it's best!

It's hard work sitting on the bench.


Jonah photo bombs the Homecoming Court presentation

Watching his team play during the first half

Coaches giving final instructions to Jonah before the half time play

The way is clear to the end zone

Celebrating and dancing in the end zone 
with his teammates






Wednesday, October 29, 2025

SO MUCH MORE THAN ONE DAY

 

My mom and her younger sister Audrey.  
Such sweethearts!

I’m not sure if I ever told this story before.  

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!






Monday, October 13, 2025

BEN'S HEALTH HISTORY

 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.  

PRIOR TO BEN'S ARRIVAL 
IN OUR FAMILY IN JULY 2016

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!

2021 to current

Somewhere in 2021 (I think) Ben 
was diagnosed with hyPOthyroidism- 
his thyroid is under working. 

"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.

9-29-25

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.  

1-5-26

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.



Friday, October 3, 2025

TRANSPARENCY

 


Interestingly enough in a recent post, I stated, "Our kiddos with their extra chromosones bring so much joy into our lives.  That is one of the main goals for this blog is to share the fun we have with our guys!"

That statement is still 100% true, but in the interest of transparency, there was day this week that wasn't much fun.  

I will not share details, but I will say there was a serious issue at school.  It is going to take a lot of wisdom to work through this issue.  

As I said to the teacher as we talked about what happened, we have many great days with our boys.  But the hard days are difficult.  

Is this issue one that shocks and surprises me?  No.  I have been to enough DS seminars and read enough information to know this could be something we'd have to deal with.  I just was hoping we wouldn't have to.  

But we do have to, and we will get through it.  School has been amazing in their understanding and support.  We have resources we can call on to help us in the education piece.  We are not alone in trying to figure out this latest parenting puzzle.

At the end of the day, we still have many blessings for which to be thankful- including the extra chromosones!


Tuesday, September 30, 2025

DENTAL ADVENTURE


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).  

The poor guy had to sit thru a 2 hour dental appointment.  That's a lot of time poking and picking at his teeth, but Ben handled it like a champ!  He wanted to have his hand held.  So I held one hand, and his brother Jonah held his other hand to comfort him.  It was very sweet.

Side note: I don't usually bring both boys to appointments.  They can feed off each other and get a little obnoxious.  Unknown to me, when I scheduled this appointment for Ben, I didn't realize there was no school for yesterday.  So that is how I ended up having both goofballs at the dentist.  To their credit, the boys did pretty good, especially considering we were there for 2 hours!

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.  

So a few thoughts:

1. 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.

2. Since Ben came home to us in 2016, we have never had any big medical issue with him.  Jonah has had 6 surgeries, but we have never had to go thru anything like this with Ben.  Ben had his open heart surgery at 18 months when he was still in Lithuania.  So that's comforting to know if he could handle major heart surgery, this dental surgery will probably not be a big deal for him.  But it will just be weird to see Ben in this situation- it might be hard for him to be vulnerable, and I'm not sure if he will allow us to comfort him.  He tends to get very independent when he is sick.  

Now the funny part of this whole 2 hour adventure at the dentist.  During the middle of all the scraping and picking on Ben's teeth, Jonah started talking about a loose tooth.  I thought he was just making appropriate associations since we were indeed at the dentist.  But then, Jonah was looking for something on the floor when he excitedly pointed to something: it was half a tooth.  I looked inside his mouth, and sure enough, I could the the spot where something had just come loose.  

Only Jonah would loose a tooth while waiting in the dentist office...that kid!

The dentist nicely checked things over for us (after Jonah got himself in a dental chair and put on a pair of dental sunglasses for the bright light).  She wasn't worried that it was only half of a tooth- the other half had already come out, unknown to us.

I have a feeling between keeping the staff into their lunch hour, having to go thru the hoops of scheduling  surgery for Dec 5th, and having Jonah as an "extra patient", that office was glad to see us go.

But truth is, I was glad to leave myself.   Quite the adventure!

Click HERE for information about Periodontal Disease



 


DOWN SYNDROME AWARENESS WALK



This past Saturday we attended the annual Down Syndrome Awareness Walk for Sheboygan and Surrounding counties.  We haven't attended this event in many years because we have usually been camping on the weekend it happens.

It was fun to join families we already knew and to meet new families as we all celebrated our kiddos.  The theme for the tshirts is "EMBRACE YOUR EXTRA"  Our kiddos with their extra chromosomes bring so much joy into our lives.  That is one of my main goals for this blog is to share the fun we have with our guys!

Team Ben and Jonah!


Each kiddo got to be introduced to the crowd as he or she walked down the "red carpet".   How nice for these kids to be recognized and acknowledged as the valued and loved individuals they are!

Our boys favorite part: hanging out with Jasmine from Aladdin.  We had to finally tell Ben to stop stalking the poor woman...

I sure love these guys!

This event raised $30,000 for the Down Syndrome Association- one family/team raised $11,000!  
That's amazing!

 DSAW offers programming and classes for kids and their families as well as scholarships for families if they have needs.  It is a great organization!  
Our boys participate in the monthly 
Teen Hangout Club.  


Funny note: Besides the 1 mile walk around the busy Sheboygan riverfront, we also were able to us the mini-golf course.  It was closed to the general public for the afternoon.  However, my thought as I watched many families and their kiddos with extra chromosomes play mini-golf: for true awareness, maybe we should let the general public play with us- that would be eye-opening indeed.  Our kiddos like to do things their own sweet way- mini golf included!


Saturday, September 20, 2025

INDEPENDENCE TRIAL

Often we try to give the boys opportunities for independence.  

Some successes we have are both take turns going in the bank and handing my transaction requests to the teller.  Both take turns going into the barber for his haircut while I stay in the car with the other one.  Ben goes in the library to return and check out items I have placed on hold.  

It's excited to watch them be able to do these things without having someone right by them to guide and direct them.

However, sometimes our attempt at independence doesn't quite work.

This week at the beach, we told the boys to go ahead down the path to the beach while we unloaded the car in the parking lot.  

Ben made it the beach successfully.  Jonah was another story.  Let me explain.  

In the picture below, you can see there is ramp to the beach labeled #1.  There is also a bridge that leads to the beach labeled #2.   These are the choices for how to access beach from the path coming from the parking lot.  

When we came up the path behind the boys, we found Jonah stuck in the area labeled #3.  He was trying to get thru the brush, around the tree, and/or down the ledge to get to the beach.   He was asking for help to get out.  

Our obvious question to Jonah was "Why did you not take one of the two obvious choices to get to the beach?" His answer: he bumped his forehead and said, "Duh" and then giggled.

Independence: Not. Quite. There. Yet. 

But Jonah sure has a fun time trying!



FALL CAMPING


This past week we camped along Lake Michigan at Harrington Beach State Park.  For being fall camping, we experienced more summer like weather: hot and humid.  So the beach was the place to be!

Our Beach Hunk Ben

Jonah pondering life

 

BIRTHDAY WITH THE BEATLES


For Jonah's 15th birthday, we took everyone to the Let It Be Club in Waukesha.  This club resembles the Cavern Club in Liverpool.  It was such a neat place with very good food.  We went early so it wouldn't be too noisy or crowded.   Jonah loved this birthday surprise!

Jonah by the stage

Crossing "Abbey Road" to leave the club

Here is the menu: creative names for their dishes!