GOOD IDEA BUT...

 

When our oldest daughter was visiting us for a weekend, she came up with a great idea for our boys to help them worship at church.  

Since our boys read a limited amount of words, they are most likely not going to be able to follow along with the lyrics that are shown on the screen in the front of the sanctuary.  

Singing/music is not a real love for Ben so this is probably not something that frustrates him.  However, Jonah loves to sing and, in particular, loves to worship.  

When we are singing a worship song that is familiar to Jonah, he can sing because he remembers the words, not because he is getting any assistance from the lyrics up on the screen.  Abigail suggested we come up with a way to help him be able to "read" the lyrics so that he can sing all of the worship songs and not be limited.  

GREAT IDEA!  

My mind immediately thought of picture cues so I set out and prepared a few songs to see if it would work.  

Jonah very excitedly watched as I worked at the computer cutting and pasting clip art.  Then he excitedly sang along with a YouTube video using the picture cues so he could sing the entire song.  I was so thrilled!  

My mind was also jumping ahead thinking of how these picture cue worship songs could help other non-readers be able to worship better.  

So the next Sunday, again very excitedly, Jonah and I packed the binder with the 3 worship songs and their picture cues.  We got to church and parked.  And then...

Jonah took his usual 10 minutes to get out the back of the truck and walk to the church doors.  When he entered the church lobby, he realized the congregation was already singing the first song.  This makes him mad every week when we are late (ironically he is usually the reason we are late!)  His frustration continued as we walked into the sanctuary and as I got out the binder so we could start with the 2nd worship song.  Because he was angry about being late, he refused to sing and refused to use the binder.  And because of that frustration/anger on that one Sunday, he wants nothing to do with the picture cue worship songs.

Good idea but I seemed to have lost my window of opportunity for it to help him, at least at this point.

Down syndrome to me has a very strong component of stubbornness which this is a perfect example of.

I've included a sample of one of the worship songs in case anyone is interested or feels this idea might be useful for their kiddo.

I'll try again in a few weeks when maybe the memory of that failure on that one Sunday is gone from Jonah's very active and interesting little mind.

Here is a sample of my "good idea but..."

MORE GREAT NEWS WITH SOME CONCERN GOING FORWARD

Jonah's MRI of his left knee came back looking good- no tears!  That is great news.

The concern going forward is how to keep Jonah's kneecaps (both knees) from continuing to slip out of place.  And of course, there is always the risk that if there is a dislocation, it will cause a tear.  

So for now, here is the plan:

1. Wear knee-braces full-time.

2. Physical therapy with the hope of eventually strengthening Jonah's core and leg muscles to act like the knee brace and prevent dislocations.  

However, given Jonah's loose muscle tone and shallow grooves for both knee caps, he might not be able to get strong enough to prevent dislocations without wearing braces.  

It's kind of a bummer for him (inconvenient, uncomfortable in the heat and under clothes etc) that he might have to have braces forever.  But knee injuries would have far worse consequences for Jonah so we have to keep that perspective.

If Jonah has another serious knee injury as he did in June, we now have an orthopedic on board to help with how to handle the injury right from the start.  This 6-22-22 injury had a long road to finding answers: urgent care, visit to pediatrician for orthopedic referral, orthopedic referral for MRI, and then waiting for MRI and then waiting for the results.  Hoping to streamline this if it ever happens again.

So a stressful week in having both a renal ultrasound and knee MRI with both risking surgery if results were not good.  But we avoided surgery for both areas- we had good results!  What an answer to prayers!  

Now going forward we have to work hard to continue to keep Jonah's kidney and knees healthy.      

GREAT NEWS WITH A TWIST OF CONCERN LOOKING AHEAD

Jonah had a renal ultrasound today.  

His last ultrasound in June was not good.  The doctor indicated if today's ultrasound was the same or worse, Jonah would most likely need surgery.  So a lot was riding on today's results.

They were great!  Jonah's right kidney is almost back to normal size (10 cm instead of the normal 9), and his left kidney went from 15.6 cm in June to 14.1 cm today.  The doctor was very pleased with that reduction.  Jonah is still considered to have severe hydronephrosis, but the doctor is very hopeful that Jonah's left kidney will continue to reduce in size.  We return in 6 months for another renal ultrasound.

Since his June ultrasound, the doctor instructed us to have Jonah double void every 2 hours.  For the most part we have followed this new routine, but we have also noticed that Jonah seems to be emptying better over the past few weeks.  His knee injury caused a bit of a setback because of him just being overall stubborn and frustrated with life, but as of late, he has been voiding more efficiently.  

When the doctor heard this update on Jonah's voiding as well as saw the results of the ultrasound today, he feels like he can finally say what really caused the hydronephrosis that started back in August 2020:

1. Jonah started to hold his urine back in summer 2020 because of new expectations being placed on him to stay dry.  Instead of holding until he used the bathroom, he basically just started holding all the time.  Of course he voided enough for us to not be concerned.  This is probably because another issue was happening behind the scenes. Jonah's bladder is very stretchy so it can hold more than a typical child.  So Jonah was voiding for us, but he was also holding a lot more urine that we could have ever imagined.

This holding of urine caused a backup into the kidneys.  The right kidney was enlarged, but the left kidney was more severely affected because of Jonah's 2012 ureter to bladder reconstruction surgery (due to a congenital defect).  The doctor thinks the backup of urine caused scar tissue from original surgery to seal together, making the ureter almost completely blocked which further complicated the issue.  All this was happening "behind the scenes" or unknown to us.

3. Since then, Jonah has had to recover from the initial and subsequent kidney infections.  He has also had to deal with the discomfort of a stent and suprapubic cathether.  Both of these things were ironically placed to help his kidney drain and get back to normal size.  However, Jonah is very sensitive to how these things feel and so even though they were necessary, they also slowed down Jonah voiding efficiently- if that makes sense.

4. February 2021 the stent was removed. May 2021 the catheter was finally removed because the doctor was pleased with how the left kidney was starting to get smaller.

5. From May 2021 to present, we have been having Jonah use the bathroom every 2 hours and really working on him to empty each time as best he can.  The regular ultrasounds over this time were showing continued improvement until June 2022.  

6. All of sudden in June 2022, Jonah's right kidney was enlarged slightly after staying the same size since Fall 2020, and Jonah's left kidney was up to 15.6 after having a downward trend that had it at going from its highest of 17.3 in August 2020 to 13.9 in December 2021.  The doctor decided to try double voiding all the time in hopes that this would bring the left kidney down in size and also avoid Jonah needing surgery to place another stent and possibly a catheter.

7. Which brought us to today's result of back down to 14.1!  The doctor was very pleased.  This shows him that Jonah's hydronephrosis is driven by his voiding issues.  From the beginning, it was him holding his urine which caused things to get blocked and backed up.  It's a behavior that is causing structure issues.  Not structure issues that are causing him the behavior of holding his urine.

This is good news.  We want to know that Jonah's kidney/bladder is working the way it should be.  We don't want to have surgery in order to reconstruct what was already reconstructed back in 2012. 

The concerning news though for me as a mom is knowing that now the pressure is really on to make sure Jonah is voiding efficiently.  Because if he doesn't, he is putting his kidney health at risk.

The other concern for me is that I did not notice any issues with Jonah's voiding in the weeks before his June 2022 ultrasound which was not good.  So I'm scared that Jonah might be presenting to me like things are going good in the bathroom, but that he might still be holding back and not emptying completely.   

So yes, very good news, very relieving news that Jonah doesn't need surgery.  But also a very stark and serious reminder that bathrooming every 2 hours and very carefully monitoring what happens every 2 hours is very essential to keeping Jonah's kidneys healthy.  

The doctor is hoping that as Jonah matures in his behavior, he is learning what it feel likes to concentrate and empty his bladder completely.  That as time goes on, there will be a time when we will not have to micro-manage this part of his life.  

But for now, we must continue encouraging and carefully watching this issue.  Regular check-ups with the urologist will continue indefinitely.  Use of pull ups will also continue indefinitely because we don't want to do anything that will "rock the boat" as the doctor put it.  Jonah will also continue on his daily antibiotic to help prevent bladder/kidney infections.  

In summary though, we are very proud of Jonah.  We have been pushing him hard these past 3 months to void efficiently, and he has answered the call, even with the setback of his knee injury.  This boy is a trooper!  Not much knocks him down for too long!

Left kidney stats: Remember normal kidney size is 9 cm

August 2020 17.3 cm x 7.9 

September 2020 15.5 cm x 6.9

October 2020 15.8 x 7.7 

April 2021 14.3 cm x 4.9 cm

September 2021 13.6 cm x 5.9

December 2021 13.9 cm x 6.9

June 2022 15.6 cm x 6.2

August 2022 14.1 cm x 4.6

INSPIRING!

 Great story!

Click HERE for article

SUCCESS OR NOT?

 

Ben just completed a 4 week social skills class offered through Progressive Beginnings in Sheboygan.

After the first class, I was quite impressed because when I spoke with one of the therapists, he identified some of the improper social things Ben does often: saying "Cow" and lifting up his shirt to show his chest.  I was impressed and relieved because I felt validated, like it isn't just me noticing odd social behaviors from Ben.  I was excited to see how this class might help Ben act more appropriately.

The next 3 weeks of class were a success.   The therapist reported each week that Ben was acting very appropriately and treating the other kids properly and with respect and kindness.  

While this news made me happy on one hand, I was also dismayed.  Because I am still seeing weird social behaviors from Ben:  for example, when Jonah's voice teacher arrives for Jonah's lesson, when we visit  Grandma and Grandpa, when we interact with the receptionist at speech therapy check-in, during fellowship time at church.  

Why?  Is it me?  Is my presence a trigger for Ben to act inappropriately?  Does he do this simply to push my buttons?  Or am I expecting too much from Ben?  More than he can give?  I wish I knew these answers.

For the most part, I can predict when Ben will act inappropriately.  It's whenever social interaction is initiated by SOMEONE ELSE.  If Ben initiates the conversation, he is very pleasant and appropriate.  But if someone greets him or asks him a question, he gives weird behaviors/answers.

Given this fact, I find it hard to believe that during this 4 week class, Ben was never approached by someone else for social interaction.  He had to have been asked questions or approached for conversation.  But the therapist tells me he did amazing.  I'm confused.  

I feel like the ball is back in my court trying to figure out how to take Ben out in public and have good interactions with people.  I wasn't that naive to think a 4 week class would "fix" everything, but I thought I would get some insight into how to help him.  But it seems like there wasn't anything to help him with. 

Confusing and frustrating is how I am feeling even though it seems like I should feel excited and proud of Ben's success in the class.

Again, I wish I had the answers to all my questions...

The mystery of Ben continues.

 

GUESS THE MOVIE

 Our ever busy cinematographer Jonah and his latest!

Compare to the original scene:

END OF THE BASEBALL SEASON

Handsome fellas, right?

They are looking older, right?

Accomplishments this baseball season:

1. Both are good "heavy" hitters!

2. Jonah finally learned to drop his bat and batting helmet gently on the ground instead of throwing them.

We love Miracle League of the Lakeshore!  It's an incredible opportunity for our boys to be part of a team that accepts them for who they are and where they are at. 

  We are so grateful for the coaches, buddies, commissioner, and other volunteers that made this season happen!