THIS IS MY SUPERHERO!

This little guy is a superhero to me!

He has faced many scary things in his life, and yet he just keeps laughing, smiling and 

having fun through it all.  

What a life lesson for all of us!

I have often said these boys of ours teach me life lessons all the time.

Our latest adventure with Jonah has been brewing for the past few weeks.

In early August, Jonah started to show symptoms of a urinary tract infection.  We took him in for a urine culture in mid August.  The test came back contaminated twice which made our pediatrician decide to deal with Jonah's problem of constipation first and see if that would clear up some of the UTI symptoms he was experiencing.  

Of course, mom guilt has to enter the picture at this point. Was I not insistent enough that something was wrong a few weeks ago?  Did I miss something or not explain things clearly enough to let the doctors know what was going on with Jonah?  Trying to work out that guilt as I process these past 24 hours...

However, there are some things about Jonah that make diagnosing difficult:

1. Jonah does not present "textbook".  Often Jonah does the complete opposite of what the books say a person will experience.  This makes it hard for all of us, parents and doctors, to assess what is really going on with him.

2. Jonah has a very high pain threshold.  Jonah can act like he is fine and then all of a sudden present as very sick.  Then in a few hours or the next day, he will act normal again.  Very hard to assess what is truly going on.

3. Jonah has a goofball personality which means his primary goal in life is to have fun.  So he is not the most reliable source when we try to ask him what hurts or what is wrong.  Sometimes he just acts goofy instead of being serious about what is wrong.  Sometimes he likes to pretend something is wrong when it isn't.  

4. Jonah is nonverbal so he can't tell us what is going on.  He can gesture and sign and try to say some words to us, but we don't always understand.  If we ask him questions, we run up against point #3 which is his goofy unreliable personality.

5. Jonah has weird things happen to him medically.  This is not our first rodeo with Jonah: pneumonia, kidney infections, tooth absesses, strep, thyroid, respiratory issues, allergic reactions to meds, odd bloodwork etc.  As I often say to Jonah, "Do you look for trouble or does trouble find you, Jonah?"

So for the past few weeks we have been dealing with on/off symptoms of a UTI with Jonah. At times, he would convince us that he definitely wasn't feel up to par, but then the next hour/or day, he would be absolutely fine.  

Then last Sun, 8-23, he ran a low grade fever and seemed to be complaining of pain on his left side.

However, Monday through Wed, no fever and not much complaining of pain. He actually seemed fine.

Thursday he was very tired and just wanted to sit by me and cuddle.

Then Friday evening, he ran another low grade fever and seemed very uncomfortable.  

So Saturday morning we brought him in for another urine sample.  This one came back with protein, blood, and white blood cells in the urine-all signs of infection.  Ended up being aerococcus urinae bacteria which is very rare and seen usually only in elderly men with prostate or catheter issues.  Obviously Jonah doesn't fit this profile.  See what I mean about Jonah doesn't follow the text book?

The rarity of the bacteria caused our pediatrician to reach out to Jonah's urologist at the Children's Hospital.  

Background information: before Jonah was born, he was diagnosed with a bladder/kidney defect that would have to be surgically repaired when Jonah was one year old.  Since that surgery, we have had follow ups with the urologist to make sure the repair was still working.  All our followups have been great reports.

However, after a ultrasound and x ray yesterday at Children's, we found out Jonah's left kidney is enlarged and some enlargement on the right also.  In other words, we are back where we were presurgery when Jonah was under one year old.

Now the million dollar questions start:  Did the repair stop working and cause the UTI infection?  Or did the UTI infection cause the kidney to back up and stop draining properly?  Why is Jonah holding his urine and not emptying his bladder completely?  Because of the UTI or because there is something not working between the bladder and the kidney?  

All questions that need to be answered. 

So that is why Jonah is having surgery on Friday.  Partly to have a camera go in and take pictures and investigate what is going on.  Partly to stretch the bladder to ureter connection and place a stent to make sure things drain properly.  And partly to insert a temporary catheter so that we have a plan B if Jonah doesn't void the way he should until the doctor knows what is exactly wrong.   

 So for now school is off the table completely until Jonah recovers from this surgery and is done with the catheter.  

We are hoping the original surgery done at one year old will not have to be redone.  

Just waiting for more information before we know how to resolve this.

However, the miracle of Jonah is he went to the hospital yesterday smiling, he left the hospital smiling, he went to bed last night smiling, and he woke up this morning smiling!  Nothing gets this kid down.  He knows and trusts that he is loved and cared for,  and that life is good even when it's not.  

What an amazing person!  

That is why Jonah is my superhero!

MIRACLE ANNIVERSARY

 Yesterday we celebrated my parents’ 67th wedding anniversary.  

In today’s world, that is quite an accomplishment in itself.  

However, this anniversary celebration was full of miracles!  

In January 2019, my mom suffered a massive stroke. She lost the use of her left side and her swallowing ability.  

There were times during these past 18 months, we weren’t sure what her future would hold. 

Yet, last night she was able to be at this anniversary dinner and EATING the meal with us!  She moved backed to her house from the nursing home in June, and since then has graduated from puréed foods to regular food.  

Even after spending 2 nites in the hospital this past week because of experiencing a short seizure, she was still able to be at the party!

And all of these accomplishments are due to God’s love and grace and His strength helping my mom AND dad work so hard on her recovery this past year and half.

It was a beautiful celebration last night!  

Congratulations Mom and Dad, and thank you Lord for all your help getting to this point!  

HERE'S THE PLAN

 

School starts 9-1-20.  Next week.

Our school district is offering two options: 

5 full days or virtual.

Lydia will be attending 5 full days.

Because the boys have an IEP, we have been able to formulate our own plan for them.  

The boys will be attending school from 9-12 each day.  They will have lunch at home, no recess, and no art, gym, or music.  They will also not have any time in their 4th grade classrooms.

They will spend their 3 hours in the special ed room having teaching time with their special ed teacher as well as their occupational and speech therapy.  I will work in the afternoon on things the teacher sends home with them.

At any point, we can change this plan and start giving them more time and more inclusion at school.

We are choosing this plan for the following reasons:

1. Minimal amount of contact/interaction for the boys since social distancing is VERY hard for them;

2. The boys will be able to be taught new things by their teacher since I feel like I am better in the role of maintaining/reviewing skills;

3. The boys will be able to have their therapies again after a very LONG break-since March 2020!

I am still very nervous about sending them to school even for 3 hours/day.  The boys have basically been safe at home since March.  We have been very protective of them.  Now I am letting them go to school, and I wouldn't even be there to watch over them.  This is very hard for me.  I worry about them getting sick, but I also worry about them getting others sick.  I honestly don't know if this will be the plan until Tuesday, 9-1 at 9 a.m. when I actually have to drop them off at school and drive away.   

I hope we are doing the smart and safe thing for them.  It's just so hard to know what is the right thing to do in this very confusing time we are in right now.

FUN BUT FAST: SUMMER 2020!

 Stephen and his sidekicks made this 

film to showcase our summer.

If video doesn't appear, here is the YouTube link:

Click HERE for Summer Days video

AND JUST LIKE THAT, SHE'S A SENIOR!

After a very unusual end to her junior year- quarantine, school at home, no junior prom (she was going to be the DJ!), no spring break college visits, no softball season, no graduation parties to say good bye to friends, no final last moments before your senior year,- Lydia is now ready to start her senior year of high school.

We were able to visit 3 colleges over the summer although the tours were mostly outdoors.

We were able to have her senior pictures taken - see below.  They are beautiful!

We are hoping she can have somewhat of a normal senior year- hoping for a fall play, homecoming, graduation, and all those special senior moments in between.  

We can't believe how our Lydia Grace got this old already!  She was always the little one of our three older kids.  Now she is almost ready to leave the nest.

Lydia has the coolest and most fun personality!  She is a super talented artist and very smart young woman.  We are so proud of her success working at the bank again this past summer.  It's going to be exciting to see what her future holds after high school.

As we learned with the other two, we are really going to cherish every moment we have with her this next school year.  Before we know it, we will be packing up the van for move-in day at college...

shaunnaclaerboutphotography.com/

WE DARED TO DO IT AGAIN!

We liked camping so much last month, we dared to do it again!

The boys are good little campers.  They eat good, sleep good, handle the public restroom without a problem, and hike good.  What more could we ask for?

We had beautiful weather so that was an added bonus.

Hard to believe it's August already.  Summer is slowly but surely winding down.

We started August by having Jonah wear underwear during the day instead of pull ups!  This is a major accomplishment!

We have been toilet training Jonah for the past 6 years.  Yes, you read that right- 6 years!  It has been a long frustrating process where we have tried every method and idea that was ever thought of for toilet training.  

What finally got us some success was a method Jonah's teacher used at school.  She did 3 intense days of toilet training and got Jonah to the point of going on demand with some self-initiating.  

Unfortunately Jonah still wets (usually slightly) between his "goes".  This is why wearing underwear has not been a possibility because of the constant clean up we would have to do.

However, this summer I came up with the idea of Jonah wearing underwear with an incontinence pad.  This way Jonah can be more like other boys his age by being underwear since the pads can be more discreet than pullups.

It's not the ultimate success I know, but to me it's a partial victory.  There have been many times in these past 6 years where I thought we would never even get to this point so I am celebrating!

It's been a real frustration for me because I feel so guilty like I am doing something terribly wrong that Jonah can't completely get toilet training.  I feel like it's my fault.  

However, after all the things I've tried and still not had complete success, I have to tell myself that perhaps Jonah just really has a difficult time completely understanding this process plus with his low muscle tone, I think he has a hard time controlling down there.  

On a different note, we went on a beautiful hike today at the state park nearby.  Ben was a determined hiker, staying on the path and having lots of energy to the very end of the .8 mile hike.  Jonah, on the other end, kept throwing himself to the ground acting out some movie in his head and kept saying he was tired and hot.  What a difference in personalities between these two!

Of interest in this next photo, many ash trees in our area have died due to the ash borer.  This photo shows how much of the state park is affected by this.  Look how many trees are dead.  The whole look of this state park will change as these trees come down.  We have an ash tree in our yard that is slowing dying from this.  Sad...

Emerald ash borer is an invasive wood-boring beetle that attacks all species of ash trees that exist in Wisconsin. ... In Wisconsin, the southeastern part of the state is generally infested.