ENT X 2

 

Jonah had his 2nd post surgery follow up appointment with the ENT doctor today.  Everything looks great!  The choanal atresia repair has remained opened.  

Now the next step for Jonah is to have a sleep study on 3-12-25 to see if this repair surgery improves his sleep apnea score.  His score before the surgery was 19 events per hour.  Doctor says the safe range is 5 and under.  Doctor is concerned that Jonah's floppy throat/tongue muscles will still be a factor in causing sleep apnea. 

Ben had his 1st appointment with ENT doctor today in order to get an order for his first sleep study.  Even though we don't really have any concerns about Ben's sleeping, we felt like he should have a baseline sleep study so we know for sure there are no issues.  

One very interesting observation from the ENT doctor is that Ben shows no effect of Down syndrome in his ear, nose, and throat area.  His ear canals are wide, his nasal passages are healthy, and he shows no laxitity in his throat/tongue muscles.  These are all issues that Jonah deals with.  But interestingly enough, Ben does not.  So I am guessing Ben will not have any issues show up on his sleep study.

Two very different guys.

BEATLE BRAIN

 

Jonah spends a LOT of time copying the names of Beatles songs.  He looks at an album song list, and then he writes list of songs on a paper.  

In church yesterday, with nothing available to copy from, he wrote this song list out.  This means he remembered the word spellings and/or sounded out the words.  Obviously his version of spelling and sounding out- haha.

But I am pretty impressed with this list!

However, his list showcases the other issue is one we have been dealing with during family Bible time at home and in also in church.  We have to continually remind Jonah to turn OFF his "Beatle Brain" and turn ON his "Bible Brain".  

The kid is obsessed with all things Beatles!  

He relates everything back to the Beatles.  For instance, with very sweet intentions, he wanted to talk to his former Sunday School teacher because he knew her mom had passed away recently.  So he went up to her and said "Eleanor Rigby".  She looked rather confused so I had to translate.  He was expressing his sympathy by using "Eleanor Rigby" because in the Beatles song, Eleanor dies and they sing about the minister and the funeral and the grave etc.  His heart was in the right place, but obviously there would have been a better choice of words to offer as comfort to his teacher...

SOME CHRISTMAS LOVE

Watch this for all the warm fuzzy feelings of Christmas love!

 

SANTA CAME EARLY THIS YEAR!

 

Over Thanksgiving, we got the exciting news that our oldest daughter Abigail and her husband Eric are expecting their first baby in May 2025!

The boys are going to be uncles- that will be a wonderful and probably hilarious experience 😃

After Abigail and Eric got engaged, Jonah started asking about a baby.  We told him that first they had to get married.  So the day after the wedding, at the gift opening, Jonah went up to Abigail and asked her where the baby was.  Jonah is a very literal person!  

Well, his dream is finally coming true.   

There's a baby coming!

And in this particular situation, 

I think we are all as excited as Jonah!

Abigail and Eric's "official" pregnancy announcement photo for Facebook

Jonah, thinking he should be part of the pregnancy announcement- haha!

HAVE YOURSELF A BLESSED LITTLE CHRISTMAS

Everywhere you go this month, you hear strains of “Have Yourself a Merry Little Christmas,” right? It was written by Hugh Martin for the film Meet Me in St. Louis, in which Judy Garland made it famous. Sometime later, Hugh, a successful composer and lyricist, suffered a nervous breakdown – but through it, he came to know Jesus Christ! Afterward, he decided to rewrite sacred lyrics for his Christmas classic – he called it “Have Yourself a Blessed Little Christmas.”

Have Yourself A Blessed Little Christmas 

Original Words & Music by Hugh Martin and Ralph Blane 

Sacred lyrics by: Hugh Martin and John Fricke

Have yourself a blessed little Christmas, Christ the King is born. Let your voices ring upon this happy morn. 

Have yourself a blessed little Christmas, Serenade the earth. Tell the world we celebrate the Savior’s birth.

Let us gather to sing to him, And to bring to him our praise. Christ the Lord is the gift for all, 

To the end of all our days.

Sing hosannas, hymns & hallelujahs, As to him we bow. Make the music mighty as the heav’ns allow. And have yourself a blessed little Christmas now.

THOUGHT:

What can I change this Christmas season to make my celebrations and experiences be more about Jesus?

THE CONTINUING MYSTERY OF BEN

As the previous post indicates, 

we have had some great weeks with Ben.  

Pretty good behavior at home, 

and amazing behavior at school.

So why then last night did we discover he had poured his water from his bedroom water bottle down his heating vent?  

Why?  I. Do. Not. Know.

This is the continuing mystery of Ben.  He can lull you into this confidence that he can and will make good choices, and then he does something like this (or naughtier, but I'm not going to share...)

It's almost like because he has trouble trusting us 100%, he doesn't want us to trust him 100%.

Now, before you get the impression that Jonah is always making good choices, let me say this.  Jonah is 100% NOT reliable which means we always have to keep a close eye on him.  He is very impulsive, and he follows his creative train of thought wherever it might lead even if that's not where he should be.

But Ben, like I said, can be rolling along doing great 

and then he sort of sucker punches you unexpectedly.  

These boys- they both are very intriguing!

 

BIG AWARD FOR BEN!

 

Each quarter the MS teachers choose one student in each of class for an RRK reward- this stands for Respect, Responsibility and Kindness.

Our Ben won the award for his Social Studies class!

We are so proud of Ben because we are hearing from his teachers that he is very socially appropriate in his classes with his peers.  So to win an award because of this outstanding behavior is such an accomplishment for him.

Ben has social anxiety: He's uncomfortable with interactions because his first 6 years of life lacked social interactions both for him to model and to participate in.  Plus Ben likes to be in control so someone asking him something takes control of the situation away from him and gives it to the person requesting information from Ben.  This makes Ben nervous.  

So for him to overcome this anxiety and participate appropriately in a large classroom setting where some of the material being discussed is beyond his understanding is AMAZING to say the least!

Way. To. Go. Ben!

Also, I am understanding somethings about Ben's social anxiety.  For the longest time, I felt like I was his trigger because a lot of his strange and inappropriate social behaviors happens only with me.  

However, his teachers helped me understand something.  They think Ben is very concerned and in tune with wanting to be accepted and fit in with his peers.  This isn't in a bad way in terms of peer pressure, but in the good way as in this awareness helps us all choose appropriate behavior.  He's learning the skill of reading the room- a very useful life skill!  

So Ben knows to keep his social quirks and oddities to a minimum at school because as he tries to model his peers, he realizes those peers are answering questions in class, raising their hands participate, and having conversations that make sense and stay on topic.  He wants to look and sound like the other kids. 

With me, or in group of adults only, Ben probably doesn't care as much about fitting in and/or doesn't care if we are not pleased with him.  And at age 14, it's very normal for a kid to be more concerned about what his peers think of him than what grown ups think.

This made me feel better because I was feeling like I was the SOLE cause of his social anxiety, but now I'm thinking I'm just ONE of the causes.  

If you're curious, the reason I'm one of the causes of Ben's social anxiety is: 

Ben views my role in his life, his primary caregiver, as a threat to his need for control.  So any demand I make on him, including social interactions, he tends to not do as requested as a way of him maintaining control.