DOWN ON OUR KNEES

 

The title of this post has many different meanings:

1. Our boys have Down syndrome

2. Jonah has knee issues 

3. Dealing with both of those issues is best by bathing them in prayer!

In regards to Jonah's knee issues, here is a copy of the recent email I sent to Jonah's special ed teacher and his physical therapist regarding our appointment with an orthopedic surgeon yesterday:

Jonah has a double "blessing" of having extreme laxity on both knee caps plus he has shallow grooves on both knees.  This makes him very prone to both knee caps sliding out of place which is very painful for him.

This summer, after his major fall in June, the orthopedic doctor suggested we really work on strengthening Jonah's core and leg muscles.  The hope being this would keep his knee caps from slipping without the need of the braces.  

What we have noticed over the past 5 months of this targeted PT is Jonah is very strong in his leg muscles and somewhat strong in his core.  However, we are continuing to see him fall from his knee giving out, close to 1x week.  His PT suggested we contact orthopedics to get an assessment for where we are at with Jonah given that PT is rather impressed with Jonah's strength at this point.

Interestingly enough, Jonah's knee hasn't given out at school even though I know the knee braces tend to slide down during the day.  My only thought is Jonah doesn't move quite as much or as impulsively at school as he does at home where he is running and jumping and twisting and turning constantly :) 

Our appointment yesterday was with an orthopedic surgeon to see what options there are for Jonah.  Surgery at this point could be an option, but it doesn't hold the best results because Jonah also has the shallow grooves which often make surgery results unsuccessful.  Also, even with the surgery, the doctor would still require Jonah to wear the braces full-time so that really doesn't get us ahead either.  Plus the recovery for 1 knee surgery is 6mths, Jonah would need both knees.  Plus, there is a chance, he would need more surgery once his growth plates close up in his later teens.  At this point, we are choosing not to go the surgical route right now.  Too hard on Jonah and not the greatest outlook for results.  If Jonah's falls increase or get worse, we will reconsider.

So going forward, we know the knee braces are our best bet.  I think the only take away for school regarding this issue is to make sure the braces are in place, especially when he goes off to recess or gym class.  Not sure if braces are considered an IEP issue?

For PT going forward, our original goal was to help with Jonah walking with not walking with his feet pointing in.  Then we added the core/leg strength to help prevent the knee caps slipping.  Not sure where we are at with goals going forward or what we have to meet for BadgerCare/Forward Health to continue covering?

One thing the doctor pointed out yesterday is that the braces may not be a lifetime thing for Jonah because often as individuals with DS get older, their activity level goes down which puts less stress on the knee caps.  Right now I have a hard time imagining Jonah not being active- haha!  Plus it's kind of a double edged sword- less activity might be good for his knees, but high activity level is good for reducing the other health risks for DS like obesity and diabetes etc.

Oh well, as with everything with these boys, it's in God's hands.  He'll give us the strength and wisdom to deal with whatever situation they present to us.  I have to remind myself of that quite often because they can present some interesting challenges:)

Final take away from yesterday's appointment: the doctor doesn't think the compression vest is necessary at this point if PT is having good success with Jonah.  So one less thing for Jonah to deal with wearing each day!

LET GO and LET GOD

 

Lots of interesting things God is having me ponder this week...

How to deal with a situation that is being handled in a right way yet the situation isn't fair?    In other words, I don't have anything to officially complain or get upset about, but the situation still feels wrong.  Kind of a hard bag of emotions to work through.

One of the truths the Lord is leaning me into during the situation alluded to above is "Letting go, and letting God".

Sort of a timeless truth that seems to take me a lot of time to accept.

OUR PAUL

Jonah loves the Beatles.  

He claims he is Paul McCartney, Dad is Ringo, Stephen is John, and Ben is George.

Here he is performing "Yesterday".

 

JONAH'S 12 YEAR CHECK

 

WEIGHT

80 lbs

25% Typical    40% DS

HEIGHT

4'5"

2% Typical    40% DS

Short for his age compared to typical kids.  

Right in the middle for height compared to kids with DS.

Little bit smaller for weight compared to typical kids.

Right in the middle for weight compared to kids with DS.

Jonah did, however, have a quite a weight increase over this past year (20 lbs). 

Doctor suggested we keep a close check on his eating habits as upcoming puberty can have an impact on weight.  

Fabulous Fun at Fab Four Concert

On our way to concert

Culver’s before concert

Waiting for concert to begin

At the intermission, Jonah asked to go home.  

He sang his heart out for the 1st half of the show and then was done.

On our way out the theater

GETTING TO THE HEART OF THE MATTER

 

Just had Ben's 3 year cardiology report.

His heart repair from 18 months old still looks good!

There is some valve leakage, but doctor is not concerned.

Return for heart echo again in 3 years.

Cardiologist did note Ben had a slow heart rate for an active boy, 58 bpm.  So he ordered a 24 hour holter monitor to get more information on this.  

If it is an issue, it might be related to his thyroid so perhaps a medication dose change is needed. 

I know I have mentioned this before, but I cannot minimize the courage and bravery of our little Ben.  He had major heart surgery (VSD repair) at 18 months old which was while he was living at the orphanage in Vilnius.  This means he was all alone at the hospital, no mom or dad to walk him to the OR or greet him in the recovery room.  No mom or dad to hang out with him in his hospital room during his stay.  No mom or dad to comfort him when he was scared or in pain.  Hopefully there were kind nurses helping care for him, but that still isn't the same as a parent.  

This boy- he is tough.  He knows how to do life alone.  Our constant prayer is still that now he would be willing to do life together....

GOODBYE MOM

My beloved mom passed away Saturday.  

She suffered a debilitating stroke in January 2019.  Her and my dad fought and worked hard for her to recover enough to be able to come home to live again.  It is a miracle she survived these past 4 years since the stroke.

Her courage and bravery, her love for my dad and our family, her kindness to everyone, and her love for the Lord- what a legacy she leaves us all.

I will miss her smile, her wisdom, her humor- so much to miss.  

I love you Mom.  

I can’t wait to have a piece of your apple pie with you up in heaven someday.  

Thank you for being the best mom ever!

 

Click HERE for obituary

When I found out my mom had passed away, I started to cry.  Ben called me over.  He put his hand on my face and said, “Don’t cry momma, Jesus will come to you.”

Click HERE for poem read at her funeral

NICE WORDS

 

Parent teacher conferences were last night for the boys.  I met with their special education, homeroom, choir, and band teachers.

I was amazed by listening to all these individuals consistently say the boys are nice and fun.  They are good workers.  They are catching on and learning new skills.  They are behaving, most of the time, very appropriately.

That was so nice to hear!  

Are there occasional bumps in the road?  Yes.  

Are there areas that need improvement? 

Yes.

 Will there be set backs?  

Probably.  

But right now, at this moment in time, the boys are doing great in school.  

It seems like their teachers enjoy having them as students and that their classmates also enjoy hanging out with them.  

Very proud of our boys!

Very nice evening.

Thank you, Lord!

15 YEARS OLD AND STILL RUNNING (literally)

 

Our dog Tucker turned 15 yesterday!

Stephen took him for a very short run.  He hasn’t ran with Stephen since his 14th birthday.  

We love Tucker!

WE ARE "PUMPED" UP!

Annual tradition of picking out pumpkins, one for each member of our family.

This year was a new experience for us.  We actually went out into the field and PICKED the pumpkins which the boys thought was pretty cool!  

Aren't these guys handsome?

The following photos are from a camping trip we had two weeks ago.  

On the shores of Lake Michigan- 

couldn't be a more beautiful place!

Since the boys were in 

school during the day, 

we enjoyed and cherished a few hours to ourselves at the campground.  

ANOTHER LOOK AT TURNING 12!

Today is Jonah's turn for a 12th birthday!

This guy knows how to have fun and live life to the fullest!  He's funny, creative, smart, and sweet all wrapped into one cute little fellow!

We love you so much Jonah James.

Jonah requested an Indiana Jones Birthday celebration so that's what he got.

Birthday boy before breakfast

Indiana Jones birthday cake

We also decorated with Indiana Jones!

Jonah's reaction to his decorations and cake!

We had his birthday cake over by Grandma and Grandpa followed by burgers and presents back at our house.  

FUN DAY for a VERY SPECIAL BOY!

I have so many emotions whenever it's Jonah's birthday.  Memories of being there for his birth.  Immense gratitude to his birth mom for the gift she gave our family.  Shock/surprise that I celebrated his 1st birthday as a cancer survivor.

It's been a wild ride since the moment the idea of adopting Jonah was placed on hearts by the Lord.   We wouldn't trade a minute of it away.  It's been worth all the blood, sweat, and tears...because of all the laughs and hugs!  

BEN'S 12 YEAR CHECK UP

Ben is healthy and "one cool kid" 

according to our pediatrician!

HEIGHT: 4'7"

Typical 10%, DS 50%

WEIGHT: 72 lbs

Typical 10%, DS 25%

So Ben continues to be small 

compared to his typical peers, 

and thin and average height 

compared to DS peers.

 

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!

 

SOME "KNEEDED" ANSWERS

Update since 6-22-22 left knee injury:

Swelling has went down.  However, his left knee has slid out of place several times in this past month.  Also, his right knee also slid out of place just the other day too.  

So this past month, we have been having Jonah wear almost full-time the Target-bought knee braces on both knees for whatever help they can provide.  We are hopeful the orthopedic doctor will prescribe better braces for Jonah's knees.  

On Sunday when Jonah's left knee slipped out, swelling came back. 

Very glad we finally have our orthopedic appointment today!

My notes from our appointment today with orthopedic doctor:

Dr thinks constant bracing is the answer for now along with continued PT.

So we now have braces for BOTH knees which are specifically made to prevent the knee cap from slipping out of place. Jonah had one of these for right knee from Fall 2021, but he had outgrown it. And the brace is specific to left or right so that is why we needed braces for both knees today.

She would like an MRI though given the amount of swelling on 6-22 and even now. Although she said today’s X-ray looks much better- patella back to center. She talked about waiting a few weeks before scheduling MRI to see if this newest swelling goes down and if new braces for both knees stops his falls. But we decided to go ahead and schedule MRI since that might be weeks out anyway. If he improves greatly, we just cancel. She is hopeful there is no tear bc she said he would be in more constant pain. However, the continued swelling makes her want to just check. Besides over-laxity from DS, Jonah has very shallow grooves for kneecap to sit in which makes it even easier to slide out Jonah very resistant to new knee braces. I think he’s just sick of always dealing with stuff

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Also, dr thinks the reason we’re seeing more of left foot turning is bc to hold your foot center, puts tension on the knee muscles. So it probably feels better to let his foot relax to center.