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JONAH'S HEALTH HISTORY

Monday, April 10, 2023

LOTS TO SAY and READ TO ME

 

Last week, Jonah had some HUGE developments in his speech and reading!


While I was getting ready one morning last week, Jonah got a hold of the IPAD and made his own video.  From the words we can understand, we think he is inviting people (some named specifically, otherwise a general invite to all) to an Easter party at our house (he gives our address).  

I shared this video with his teacher and speech therapists because I had mixed feelings about it.  

On one hand, I was super impressed because 2-3 years ago, Jonah would have never tried to talk this much.  For many years, Jonah would only speak 1 to 3 words at a time.  Talking just wasn't his "go-to" activity.  He had other ways to communicate his wants, needs, and ideas so he didn't have to string together words and talk to us.  So to watch him make a 2 minute video of him just talking away is like music to my ears!  

However, I am a little sad because after all the hard work and therapy, there are many words in this video that I still don't understand yet.  This boy has so much to tell us and such interesting thoughts on life, and I don't want to miss any of it.  He still struggles with the pronunciation of many sounds.  

His teachers and therapists were quick to encourage me though.  They pointed out that if this had been a conversation with Jonah, we would have had opportunities to clarify and ask him questions so we could get a better understanding of what he was trying to say.  So in normal face to face interaction with Jonah, they see great improvement: he is talking more, AND he is willing and able to help clarify what he is trying to say by answering questions we ask.  That is a huge accomplishment and development for him.  We are continuing to move forward and that is always an answer to prayer.


This next video is a new development because for the first time ever, Jonah brought me a book and wanted to read it TO ME.  Usually if I want him to read a book, I have to prompt him to sit down and read with me and then prompt him with sounding the words out.  But on this day, he initiated the activity and initiated the sounding out of the words.  

The other huge accomplishment this video reveals is Jonah is able to transfer his knowledge of his Edmark words (the reading program he uses at school) and read them in a non-Edmark setting.  In the past, he has struggled with that.  So the words he says in the video with great accuracy are his Edmark words and then the other words he is sounding out the best he can.  It probably helped him that he picked the familiar story of "Frosty the Snowman".  

I was so excited when he started reading aloud next to me, and I am so grateful I had my wits about me to record this interaction.  So proud of him!

Ben has always been more verbal than Jonah.  The issue we are working on with Ben is getting him to speak more clearly and then also an issue with social anxiety which present as silly or inappropriate responses when asked questions.  He is slowly making progress, but it is definitely an uphill battle.

In terms of reading, Ben is further along in the Edmark program, but he is way more resistant to sounding out words than Jonah.  

These boys: 
they are the yin to other's yang :)

 





 



  

GOOD FRIDAY IN GREEN BAY

This title has a double meaning.  

Friday was Good Friday as we remember the sacrifice Jesus made for us all by dying on the cross.  The heaviness of Friday is followed by the victory of Jesus' resurrection on Easter Sunday.  What a beautiful weekend of praise and celebration.


Favorite Easter song this yea

But Friday was also a good Friday because we spent it up in Green Bay touring Lambeau Field and then having lunch with dear friends of ours.  We highly recommend both activies if you are ever in Green Bay-haha!

Lambeau Field Atrium

Walking the tunnel onto the Field

On the sidelines of "hallowed ground"

Enjoying the luxury box view
(probably our only chance ever)

Making a play on the field :)




Tuesday, March 21, 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.





 

Saturday, March 18, 2023

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!












Monday, February 20, 2023

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...

Monday, February 6, 2023

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.