EVEN AFTER ALL THESE YEARS

 This week we had sickness go through our household.  Jonah got sick on Sunday night, and I got sick on Tuesday night.  However, Ben seemed to feel fine and continued to attend school Monday and Tuesday.  However, Tuesday night when I put him to bed, because I was starting to feel under the weather, I talked to him about making sure he calls out to me during the night if he feels sick.  I also left his door open during the night so he could come get me if he felt sick.

Let me give you some background info: Ben's orphanage must have had VERY STRICT rules about bedtime and getting dirty.  For everything Ben has adapted to in his American life, he has not been able to let go of these high restrictions.  Ben will not let us know he is awake in the morning and ready to start his day.  He quietly waits until we come and get him.  If you know Ben, this passive approach doesn't fit his personality.  Ben also gets very worried and concerned we are going to get angry at him if he gets his clothes dirty.  To the point, that he will not let us know when he is sick to his stomach because he is afraid we will get mad at him for making a mess.  Again, if you know Ben's personality, Ben is not one to feel much remorse for being naughty and yet this is one area he truly bads about.  So over the years we have been working to encourage him over the years that its ok if he gets sick/dirty, and its no big deal to clean up the mess.  But he needs to let us know rather than try to hide to the mess in his bedroom.

Well yesterday morning I went up to get Ben and found him hiding under his bed with just his head sticking out by the heat register.  Yes, connect those dots, he had gotten sick and used the heat register as his hiding spot.  

I can't believe after all these years, these fears are still instilled in him.  Why wouldn't he call me or come get me when he was feeling sick?  Why does he try to hide?  What was the punishment he received in that orphanage that has put this fear in him?  

So yes, I did have a firm talk to him about not ever using the heat registers again, but I also tried to communicate to him that he just has to tell me and I will be there to help him thru getting sick.  But even as I say those words to him, I can just tell his face blanks over and he's not really listening.  I don't know if we will ever break through those barriers.  

Very interesting- and sad in a way.  Sometimes it seems like love only reaches so far with Ben.  He will always have this wall around his heart and only he will control when that wall will come down on choice occasions.  

Proof that life is better lived from the start in the midst of a loving family- not in the herd mentality of an orphanage or in the hodge podge of bouncing kids around foster care homes.  

Good News: we are all starting to feel better!    

END OF THE TALE OF TWO KIDNEYS!

 Jonah had his one year follow up with the urologist today.  Everything looks great!  

In fact Jonah doesn't need to be checked again until January 2027.  What a change from the constant checks we had from August 2020 thru January 2023.  

This has been a long road since the emergency surgery in August 2020.  

We are very glad we can finally put this kidney issue in our rearview mirror.  

Jonah has recovered from his severe hydronephrosis of his kidneys.  Praise the Lord!

To insure that he continues to have healthy kidneys, we are continuing with his daily Flomax medicine.  

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?