ONE OF THESE THINGS JUST DOESN’T BELONG

First day of spring break 2023

 

WORLD DOWN SYNDROME DAY

3-21 is World Down Syndrome Day!

Today is the day to celebrate 

3 copies of chromosome 21!

Hopefully the following video will be shown at school today along with this handout.

Click HERE for DS handout

 

JUST RANDOM STUFF

 Chicago weekend for the Lavey ladies.  

This was part of our Christmas present for the girls.  We also were able to meet up with Stephen for breakfast near Loyola.

Our bank employee finds an important building in Chicago!

"Les Miserables" at the Palace

SOOOO Good!

Giordano's

Also SOOOO Good!

Bridal dress shopping on the way home from Chicago.  Abigail's dress is amazing!

Our church needed a family photo for their directory

so we tried our best to capture us :)

He is so cute!

This guy is so cute too!  

And Tucker is pretty sweet also!

Ben gets glasses (again).  He had glasses in the orphanage and when we first brought him home.  Then for the past few years, he did not need any correction.  And now, he is back to needing some help.  He looks so grown-up.

The older kids surprised us with a delicious meal for our anniversary on March 12th.  It was funded by Abigail and Stephen and cooked by Lydia.  

We celebrated 29 years!

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!