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JONAH'S HEALTH HISTORY

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!





 

SCHOOL AND FOOTBALL


The boys started their freshman year!  A few bumps in the road as they get use to a new building, some new teachers, and higher expectations being in high school.  But I think they are finding their groove.

Jonah also started his high school football career.  He is on the junior varsity team, but he also gets to suit up for varsity games.  He hasn't had a JV game yet because he is only going to attend the home games.  But he has attended 2 varsity home games so far.  He absolutely LOVES being able to run on to the field with his team!  We are so excited for him!

1st day of school- 9th grade

1st Varsity FB game

Ben got to sing the National Anthem with his choir.  Can you see his face circled in the back of the group?

The teacher gave Jonah a birthday party at school

Ben got to enjoy the festivities also!