DOUBLE TROUBLE

Jonah stopped his daily antibiotic for his kidney on 1-14-23.  On that day, he started with a bad cold.  

Between him and Ben, they have both struggled with cold symptoms for the past month.  However, neither have not had a fever over the course these past 4 weeks.  

On Saturday, though, Jonah started to complain of a very sore throat.  Jonah has a high pain tolerance so when he says something hurts, that usually means it really hurts.  We also noticed a white spot in the back of his throat.  So off to urgent care we went where he was diagnosed with strep and a sinus infection.  We decided to have Ben checked too, and it ends up he also has strep.  

I'm not a medical expert by any means, but I am wondering if that daily antibiotic was helping Jonah fight off the many cold/flu bugs going around.  When we stopped that line of protection, he caught a cold and then couldn't get rid of it?  Just a thought...

DOWN ON ONE KNEE

    

The past months, we have had a lot of knee issues with Jonah. 

This weekend we had a different kind of knee issue: our daughter Abigail is engaged!

We now begin another season of life...instead of us being just married with children, we will now have a married child.  Weird, but super exciting and so happy for them and us!

On a side note, when you have children with special needs, your typical children take on added responsibility.  Not that we expect our older kids to be the primary caregivers for the boys if something happens to us, but they will need to be the primary decision-makers for what happens to the boys.  We have made plans and provisions, but it will be up to them to see those are carried out.  

When your typical child finds their soul mate, part of that relationship needs to include that person is on board with that possible responsibility if something happens to us.  We always hoped and prayed our boys would help our older kids find a person who had a very special heart.  

Our prayers were answered with who Abigail found in her fiance.  

DOWN RIGHT BLESSED

Christmas 2022

How blessed am I to be able to do life alongside these two guys.

I am blessed because although most of their day to day activities take more work and effort compared to typically developing kiddos, they are not discouraged because of that.  They, for the most part, are always full of excitement and joy for life.  

I am blessed because these boys show their feelings without inhibition.  There are no mind games with them.  What they feel is what they show.  It's refreshing.  Sometimes us typically developing humans waste a lot of time pretending or avoiding letting others know how we truly feel, but then we get upset when people don't "get us".  Our boys lay it all out on the line- you either accept them for who they are or you don't.

Along with that, their love for Jesus is never hidden or set aside because they are worried about what others might think of them.  If they see a baby, they tell the parents of that baby about Baby Jesus.  In fact if they see anything that reminds them of a Bible story, they let the people around them know that.  Our boys are the epitome of Ephesians 5:15: "make the most of every opportunity".

I am also blessed because so many people (of all ages) come alongside our boys and help them do life.  We have so many people who each and every day give our boys support, care, encouragement and teach them valuable skills.  We as parents are not alone in this journey with our boys.  We have people who are willing to help the boys and help us.

Finally, I am blessed because I get to watch these two boys live life in the most full and fun way.  When they pretend to be the Beatles or Batman, they really think they are the Beatles or Batman.  When Jonah composes a song or a story, to him he's just created one of the greatest hits or greatest American novel.  In a sense, their dreams are their reality.  How fun is that?  Of course, mean people like us parents have to occasionally give them a reality check and get them back to the tasks of real life, but it doesn't take long and they are off to dreaming again of the next great thing they can be or do!

Thank you Lord for blessing me with the privilege of doing life with these boys!  I am down right blessed.

 

NO MORE PAW PRINT!

 I don't understand much as I watch a kidney ultrasound being done, but since Jonah's initial kidney/bladder issue in August 2020, I have learned this.  If you see something that looks like a huge paw print in your son's kidney, it's not good.

Today, finally, after countless ultrasounds, much medication, a 9 mth suprapubic catheter, several surgeries, and much pain, discomfort, and hard work for Jonah, there is finally no paw print in Jonah's left kidney.

Praise the Lord!

This means we do not need to be seen for a year by the urologist unless we suspect something is going wrong again.  This also means we are going to try and stop the daily antibiotic that Jonah has been on since November 2020.  Since his left kidney is back to normal and Jonah has been voiding very efficiently, the doctor feels it is safe to try and stop the antibiotic. 

The only difficult piece of news today is that the doctor suspects Jonah will never be fully trained.  That is hard to hear, but at least now I know it wasn't just me not doing the right thing to train him.  For both physical and cognitive reasons, full training may just be something too hard for Jonah to obtain 100% success.  

But for his kidney to have so greatly improved from June 2022 (when things took a huge step backwards again) shows us Jonah is a rock star for working so hard in improving his voiding.  We are proud of him for never giving up when so much was asked of him for so long.  Yeah, Jonah!

Here is the photo of the ultrasounds from June 2022 (on the right) and today (on the left).  

No more paw print today!

Also, Jonah really impressed the nurses and doctor today with his knowledge of the Beatles.  He listed about 10 songs off the "Beatles 1" album.  They were impressed with him knowing the titles, but also by his speech.  They have never heard him talk to much!

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".