DON’T FORGET

 

Came across this on Facebook.  Well-written.  Good to remember today and everyday.

TIME TO THINK

 

THINKING ABOUT TIME TODAY...

Abigail's birthday today.  Lydia graduating high school next week.  Stephen taking the MCAT on Friday in preparation for his plans after college.  Jonah finishing up with his catheter of 9 months and hopefully staying healthy going forward.  Ben's 5 year anniversary of being in our family coming up this summer.

HOW FAST IT GOES...

As of today, I have been a stay at home mom for 23 years!  How can this be?  Did my investment of that time make a difference in my children's lives?  How many more years will I stay home with Ben and Jonah?  How long will they need me 24/7?  What is my role in my older kids' lives now as they make their own decisions and plans  

HOW MY SENSE OF TIMING IS SO VERY DIFFERENT FROM GOD'S...

What about my hopes and dreams for all five of our children?  

What are their own individual hopes and dreams?

SO VERY MUCH TO THINK ABOUT...

And now on a less serious note, 

here is one of my all-time favorite photos of our Abigail Joy.

Looks like she was busy thinking about things herself!

NO MORE?

CATHETER!  

Jonah had his catheter removed today!  After 9 months of dealing with it, we are done.  

Praise the Lord!

This means Jonah can swim this summer- relief!

This also means we are going to have to be very diligent about making sure he pees enough on his own. We don’t want this to ever happen again.

The doctor wants us to keep a strict 2 hour schedule and continuing using the Flomax med and preventative antibiotic for the next 3 months.  A renal ultrasound and follow up appointment are set for 9-7.

We are very proud of how hard Jonah has worked these past months to learn how to pee more efficiently.

Oddly enough despite how excited he was at home about the appointment, Jonah was crabby during today’s appointment so it wasn’t the most pleasant visit.  That's why he doesn't look real excited in the photo.

Oh well, he’s happy now, and the tube is out.  

Prayers answered!

OUR DAUGHTER THE DJ

 

Lydia had her senior prom this past weekend to make up for the junior prom her class missed last year due to Covid.

Lydia was the DJ.  She had so much fun!

Glad she could experience this iconic high school event!

SHAPE UP!

 

Yesterday we attended Lydia's baccalaureate service for her upcoming graduation. 

 

The speakers all had great messages for the kids as well us parents.  

This is some of what was shared:

OUR IDENTITY IN CHRIST IS SHAPED BY:

Click HERE for article explaining SHAPE

START OF THE SENIOR STUFF

 Lydia’s senior is quickly coming to an end.  It’s hard for me to think of my “baby” graduating and heading for college.  I’m going to miss her soooo much.

The next weeks are a whirlwind of senior events:

1. Senior art show

2. Baccalaureate service

3. Senior scholarship program

4. Graduation

5. Graduation party

Here is a photo of Lydia’s art show. She is an amazing artist!

Plus last week, Lydia turned 18 years old.  She wasn't thrilled about having her photo taken with her birthday donut (cake came later).  We also didn't have any birthday candles that morning so we improvised with a votive candle.  Ben photo-bombed his thumb into the picture, and Tucker photo-bombed himself. 

We celebrated later with take-out Thai food for Lydia and Andrew and Culvers for the boys and I.  

And a DQ ice cream cake by Grandma and Grandpa.

CONFESSIONS OF A GLAMPER

 I love to camp.  

But if I’m honest about it, I’m not a fan of primitive camping.  I like running hot/cold water, a refrigerator, nice camping stove, my own bathroom, heat and air conditioning, and a nice bed.  

So I guess I’m more of a “glamper”.

Which is why this summer we’ll be camping like this:

We loved our pop up camper, but with 2 little boys with special needs, anything that makes life easier, is always greatly valued!

Camping at High Cliff State Park- beautiful!

Heading home good and tired!

GOOD NEWS!

 

After 9 months of ups and downs, this morning we got the news from Jonah's urologist that he will remove the catheter on May 25th!!!!  One week away!

And even better, removal of catheter can just happen in the office.  No need to sedated.

We are so excited and happy for Jonah!  These past 9 months have not been easy on him.  He has endured a lot of pain and discomfort and inconvenience.  Yet for the most part, he has handled it with a smile and sense of humor.  

We are so proud of him for all his work learning how to pee efficiently!  We are very greatful for the Flomax medicine since that seemed to be the game changer for Jonah.  Flomax helps relaxes his pee muscles, and we think that has made all the difference.

We know going forward Jonah will have to be watched closely by us and his urologist to make sure he is continuing to void efficiently and safely and to monitor that left kidney.  But getting rid of the catheter is a major step forward, and a step that at times seemed like it was never going to happen.

We are grateful for the wonderful care and concern that Jonah's urologist has shown him over these 9 months and for Jonah's pediatrician who has pitched in and helped with urine cultures etc.  Jonah has a great team to support him.  

We are so excited for 5-25!

To celebrate, a little urology humor!

SCHOOL SCHEDULE

 

Since this blog is my digital memory book, I want to record the boys’ school schedule for the past 2 years as a result of the pandemic.

3rd grade, 2019-2020: Starting mid March 2020, school closed because of Covid 19.  We all thought this would only be for 2-4 weeks, but it ended up school was closed for the remainder of the school year.  I homeschooled the boys from mid March to June.  There was some virtual schooling for them, but mostly it was me.  

4th grade, 2020-2021:

1. Plan was for both boys to attend mornings only in the special Ed room only as a way to limit any exposure to Covid 19.  

2. Because Jonah got sick the end of August, only Ben started school in the beginning of the year.  He went in the mornings only, only in the special Ed room.

3. In the afternoon, I would do school at home with the boys using materials provided by their special Ed teacher.

4. By the last week in September, Jonah had recovered from his 9-4 surgery and was ready to try in person school.  He joined Ben, in the mornings only, only in the special Ed room.  

5. The end of September we were informed our boys were direct contacts to a Covid case at school.  This lead to a 14 day quarantine at home.  During quarantine, the boys did virtual school in the morning, and I continued to work with them in the afternoon.

6. During this time, Jonah started to feel sick- lots of pain and discomfort. This was the start of frequent infections as a result of the catheter/stent.  However, it wasn’t until early November that the doctor decided to put him on a daily antibiotic to help prevent the infections.  So October was a very rough month for Jonah.

7. After the scare of the direct exposure as well as Jonah feeling sick, we decided to keep the boys virtual and not go back to in person school.  We would re-evaluate after Jonah’s 12-17 surgery to replace or remove stent/catheter.

8. Mid December- Andrew, Stephen, and myself got Covid.  This meant the 12-17 surgery had to be postponed until 2-11-21.  We decided to keep boys virtual until Jonah’s surgery since we wanted to do all we could to not have to delay it again.

9. After the holidays, school had no Covid cases for all of January.  We decided since Jonah was feeling much better since being on the daily antibiotic, we would try in person school in the mornings again, only in the special Ed room.  I would continue to do school in the afternoon with them.  This was early February.  We also were less concerned about Covid for the boys because they were around 3 of us having it in December and didn’t get it themselves.

10. We even started full day Tuesdays for both boys.  I would get Jonah over lunch to do his catheter care.

11. After Jonah’s 2-11 surgery where stent was removed (yeah!- but catheter had to be replaced, not removed)- we decided to put the boys in school from 8:45-3:15 everyday, in the special Ed room room only.  School was amazing and agreed to do the catheter care for Jonah so I no longer had to come and get him at lunch. 

We are so grateful for all the help and support school has shown us as a result of our concerns about Covid and Jonah’s health concerns.  Their school team is incredible!

Next year is middle school for the boys- mostly a whole new team for them.  This will be a hard transition for all of us.  I am going to miss the wonderful teachers and staff at the elementary school.  Our boys have really blossomed because of all their hard work with them!

SOME VERY GOOD TEACHERS

I forgot to share a very insightful story from Jonah's ER visit on 4-23 for a kidney infection.

Jonah is usually a very sweet and polite little boy at doctor appointments.  Even at the ER a few weeks ago, when he wasn't feeling that good, he remembered to say please and thank you to the different staff that came in and out of our room to work on him.

However, he got uncharacteristically upset when 3 nurses came in to put the IV in his arm so he could receive fluids and his antibiotic.  A child life specialist even came into the room to help him settle down.  We got him to sit still so they could put in the needle, but he was still complaining.  Even after the needle was placed and it was just him and me in the room, he kept complaining about having the IV placed.  

Jonah is usually easily redirected so this surprised me that he wasn't getting over it.  I asked him what was the problem that he was so upset.  He signed eating a hamburger which is his way of asking for Culvers.

NOTE: Culvers is now pretty much a given after any medical appointment for this little guy.  

I figured he deserves it after all he's been through lately.

If I think of it, I will insert an actual photo of Jonah signing "hamburger" because Jonah is a little cuter than this guy, but for now, this is what I mean by signing "hamburger".

  Then after signing "hamburger ", he pointed to his IV and then he signed the "number one".  

The light bulb went on in my head.  I asked him, "Are you worried you won't be able to eat your hamburger with only one hand because of the IV being in the other hand?"

He had a very sad look on his face and cried out, "Yes."  

I quickly reassured him that the IV would be taken out before we left the hospital that day, and that he would have his 2 hands available so he could easily eat his burger.  

A look of great relief and peace came over his little face.  All was right in his world again as long as he knew he would be able to eat his Culver's hamburger.

I was amazed by Jonah!  Here I am worrying (and Andrew and the older kids from home) about Jonah's kidney and how this infection could potentially set us back for getting the catheter out, and Jonah is worried about a hamburger!  What a difference in perspective.  

Jonah doesn't let the big stuff get him down.  He has amazing trust that the grown ups in his life will take good care of him and keep him safe and healthy.  The biggest thing Jonah worries about is a hamburger.  

Life doesn't seem as hard and overwhelming when you leave the big things to the Lord, does it?

These boys continue to be amazing teachers to me about a better way to do life.  For the most part, they just focus on the things in their life that bring them joy.  They don't focus on the negative.  They live trusting others to help and care for them.  They focus on living life to the fullest, not being overwhelmed about life sometimes being the hardest.  

Today I am thankful for this incredible perspective I get to be around each and every day.

Thank you Lord for using a child to lead me to better trust and lean on you.  

And thank you Lord for the gifts of hamburgers and other little things that make us happy throughout the day.  Help me to always live with an attitude of gratitude!   

Repeat photo from another post, but this is Jonah after his hamburger emergency :)

 

MOTHER’S DAY LAUGH

Click HERE to watch funny video 

Video from church this morning

SPRING UPDATE: SCHOOL, BEHAVIORS, HEALTH, AND ADOPTION STORIES

 

BEN:

Doing GREAT in school.  Almost every day we receive a note from his teacher complimenting Ben for his hard work and determination to learn.  Ben is improving in his handwriting, math, and reading skills.  We are so proud of Ben.  Ben loves a good challenge so if something is difficult for him, that motivates him to conquer it!  I think this kid is destined to great things in life.

A few struggles we are having with Ben as of late: I think the green eyed monster of jealously has been hitting Ben.  With all of Jonah's health issues, I think Ben is trying to command a little more attention for himself.  Unfortunately he doesn't care if that is positive or negative attention so he does whatever he cn to get us to notice him: defiance and trying to control everything (bossing people around, trying to discipline Jonah, TV remotes, turning on lights/fans throughout the house, trying to "cook" in the kitchen, trying to work appliances etc).  He's requiring a lot of surveillance these past 2 weeks and a little bit more patience on our part than usual.

JONAH:
Doing GREAT with peeing on his own.  Doctor is very hopeful once this infection clears up, we will be very close to removing the catheter!  

Our schedule is VERY busy with all appointments to keep Jonah healthy: labwork, physical therapy, behavioral therapy, urine cultures etc.  

Also Ben has a few appointments to thrown in the mix too, so we are hopping!

Having some really good days in school, and having some days where he struggles with attending.  

Jonah's sweetness has really amped up these past couple of weeks.  He is very polite and cuddly and just overall happy to hang out with us.  

BOTH BOYS:

We decided to tell the boys their adoption stories.  We have always referred to them being adopted, but we have never sat them down and fully explained what that meant.  

I remember a few years ago I was talking to another adoptive mom of boys with Down syndrome.  She told me that both her boys knew all about their adoptions.  At the time, I knew our boys were not at a point that they would understand if we told them.  Her boys were a few years older than ours.

So here we are 2 years later, and we decided our boys were ready.  

What really initiated this was the boys' teacher this school year was pregnant.  So the whole  "baby in the tummy" became quite the topic at our house, with our boys trying to associate that they were once babies in my tummy.  I didn't want to lie to them so we decided it was time to explain.  

The other thing that I became aware of over these past few months is that with all our doctor appointments because of Jonah's kidney issue, I quite often have to refer to him being adopted during the medical history part of the exam.  Jonah listens to EVERYTHING that is said so he was hearing this reference about adoption.  It wasn't fair of us to be telling strangers about them without them knowing what adoption meant.

So I made a social story book about their stories.  We even included photos of their birth parents.  We prayed over the book and over our boys before presenting it to them.  

As I read the book, Jonah only focused on Ben's story.  Ben kept focusing on my tummy and saying "Me baby."  Very interesting.  Then for the next hour after reading the book, both boys were VERY naughty.  I think they were processing what they had heard.

A few days later, Jonah wanted to show the book to Stephen over FaceTime.  He seemed very comfortable and proud of it.  Ben is not interested in it anymore.

Of course, I do recognize that some of the behavior I described above in Ben's section may also be a reaction to us telling him his adoption story.  Jonah's more intense affection I described above in his section may also be a reaction to his adoption.  When you have kiddos that can't completely express/communicate their thoughts/feelings, it's a guessing game to figure out what is reaction to what.  We do the best we can.  

That is all we are going to do with them for now.  They know where the book is if they want to look at it again.  We will continue to remind them how much we love them and that we are their family forever.

Did we open a can of worms that didn't need to opened?  I don't know, but it seemed like telling the truth was the best answer so that's what we did.