WHAT GOES DOWN MUST COME UP

Famous sign on the trail warning people 

to be sure they are prepared to travel back up!

Andrew, Stephen, and Eric had an adventure of a lifetime this week: they hiked down to the Grand Canyon, stayed at Phantom Lodge, and hiked back up the next day.

Sunday:5 hours to hike down

Monday:10 hours to hike back up.

What an experience!

The boys and I stayed safely at home.  Thousands of miles away from the rim of the Grand Canyon seems like the safest place for our dynamic duo!

The hike down on South Kaibab Trail

Round trip completed- back up via the Bright Angel Trail

THE OLD AND THE RESTLESS

Anyone going down memory lane: Katherine, Victor, Nikki, Ashley, Paul...

Anyhow, the true topic of this post is Jonah's sleep study last Wednesday which was not our greatest night.  

So the reason this post is not called the "Young and the Restless" as is the correct soap opera title is for two reasons:

1. I'm an old mom, not a young mom.  I am also a mom who got no more than one hour of sleep during the evening we spent at Hotel Children's.  Hence the restless part of the title.  It was a very long night!  I started coming down with a cold during the night so I was not feeling the greatest plus my sleep patterns haven't been that impressive lately anyways.  I've heard that sleep issues can pop up as you age- yeah :(

2. This is Jonah's 4th or 5th sleep study.  He has always done amazing despite the fact he is hooked up to all these wires as shown by this STOCK photo (not Jonah) below:

However at last week's sleep study, Jonah had a very hard time settling in and falling/staying asleep.  He was very fussy.  He also had a cough starting so I'm wondering if he wasn't feeling that great either.  Or because he's OLDER now, maybe he's just done with all the fuss of sleep studies.  Perhaps they've lost their charm.  So he had a very restless night of sleep.  The sleep technicians got about 4 hours of sleep data from him broken up over the 10 hours we were there.

However, there is good news though- I think.  Based on my reading of the results, Jonah's sleep apnea events per hour are down to 6!  He was at 32, then after tonsil removal it dropped to 19.  These numbers still have him as severe sleep apnea.  However, this number of 6 puts him in the moderate category.  So if that is the case, there is a good chance Jonah will not need to have the apnea implant device surgery!  Relief!  The only issue is the report stated that due to the small amount of sleep data, there is a chance his numbers might not be this good had it been a normal night of sleep.  

So we are waiting to hear the official word from Jonah's ENT, but we are hopeful his sleep apnea is in the rear view mirror because of the October 2024 nasal repair surgery!

UPDATE: ENT doctor called: 6.6 is a great improvement.  In fact, Jonah is now below the number that would warrant the implant surgery for sleep apnea (that was above 9).  However, his age would show that he should be below 5 for safe sleeping purposes.  So ENT will consult with sleep doctors to see what needs to be done in terms of monitoring Jonah's moderate sleep apnea.  Waiting to hear from sleep doctors...

 

SHOW TIME!

The past 2 months, the boys have been busy rehearsing for the middle school play.  They are playing deputies to the chief of police.

When we heard about the middle school doing a play, we asked the boys if they would like to be part of this.  Jonah answered an immediate yes.  A few days later, Ben communicated that he would also like to be part of the play.  So we proceeded to talk to the teachers who were the directors of the play.  It was so wonderful that they were immediately on board with including the boys and finding ways to make this experience work.

And work it did!  The entire experience from rehearsals to cast party (lots of pizza-haha) to the actual performances was amazing!

One of the neatest things I observed was the other middle school cast members pitching in and helping the boys where needed- guiding them to where they needed to be on stage, giving them extra prompts so they would know what to do and when to do it, and helping them stay out of trouble back stage- haha!

And we are also so proud of our boys.  Being at rehearsals meant there was a lot of time waiting for their scenes (PATIENCE).  Sometimes things didn't go exactly as planned for their cues so they had to learn how to adapt and quickly do things differently (FLEXIBILITY/FOLLOWING DIRECTIONS).  It also worked their SELF-CONTROL muscles because there are a lot of interesting things in theater from play props and costumes, to stage curtains, lighting, monitors etc that should not touched.  

But the boys persevered through all of it!  And for the actual performances, they remembered what to do and did it appropriately.  It was a HUGE win!

In my thank you to the directors, I told them my hope for the boys as they navigate life is that they will be surrounded by people who accept them for who they are and include them as they are.  

Our hopes were fulfilled in this 

middle school play experience!

P.S. Jonah being a "well-rounded individual" who is involved in an array of activities, invited his football coach to the play.  And because his coach and family are really cool people, they came!

 

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...