BACK AT THE RACES

After over 18 months of not being to see Stephen run in a race, we were back at a race today!  

HOPING FOR MORE IMPROVEMENT

 

Jonah's 3 month urology follow-up appointment did not go as we hoped.  Jonah's kidney is about the same size it was at the 4-23-21 ultrasound in the ER. Meaning still too big 😔 

Today's ultrasound of the bladder showed Jonah is still not voiding as efficiently as he should.  

Some new techniques to try and get him to pee more.  Return in 3 months for another ultrasound.

Trying to think positive- at least things didn't get worse...

NOT ANY EASIER

 

 We thought maybe the third time bringing one of our kids to college would be easier.

It wasn’t, it was just as hard😕

We are really going to miss this girl…

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!

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!

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.

BAD BUT NOT SAD

 

In the middle of night last Thursday, Jonah started with kidney infection symptoms: severe back and side pain and nausea and vomiting.  We spent most of Friday in the ER so he could get IV fluids and antibiotics.  Over the weekend, we started oral antibiotics at home for a 10 day course.

Jonah is starting to feel better: 

less back pain and less nausea.  

So he was feeling very bad when infection first hit, now he is on mend, thank goodness!

While it is very hard to see your child is pain and discomfort when they are feeling bad, we are very grateful that the cause of this kidney infection appears to be catheter related.  Catheters are breeding grounds for bacteria so it is not unusual that an infection would happen.  

What we were worried about when we first noticed he was having symptoms was that he was retaining urine again.  This was the cause of his original kidney infection in  August 2020.  

You see, these past 2 weeks, we have been draining the catheter less often which is requiring Jonah to have to void efficiently and safely.  We thought he was giving us very good numbers, however, when he started to get sick, we were nervous this meant he was not handling voiding on his own.   This would have made us very sad because it might have indicated that Jonah would need a catheter long-term.  

But we are not sad because the doctor is very impressed with Jonah's voiding totals.  Also the renal ultrasound done in the ER shows the left kidney is smaller in size than it was in October so it's actually improving.  So the doctor thinks this kidney infection is just "bad luck" of getting bad bacteria in that catheter.  

Of course, the doctor is concerned about clearing up this infection as soon as possible.  That is why Jonah is on 2 antibiotics for 10 days.  His bacteria is a tough one to treat so we are hoping and praying this infection can be treated with this course of treatment.

Because in 10 days, if all is clear, the doctor said he thinks we are getting very close to removing the catheter!!!!!  Provided Jonah also continues to void good numbers once he starts again on Thursday.  The doctor wants Jonah to be on full drainage for a few days to help flush the kidneys/bladder of this infection.

So Jonah felt bad, but at least we are not sad.  We'll take 1 out of 2 at this point.  As long we are getting closer to Jonah being without a catheter- it's been there since 9-4-20.  It's time to COME OUT!

From the ER on Friday

Jonah started to perk up after getting fluids and antibiotics by IV

 

THIS IS SORT OF HOW I FEEL

 

Due to COVID, since mid March 2020, both of the boys have been home with me every day all day.  

In September 2020, I had a small break for 3 weeks when Ben attended school in the mornings so I only had Jonah home as he recovered from his kidney/bladder surgery.

  

Then the last week of September, both boys attended school in the mornings.  However, they had a direct exposure at school causing them to be in quarantine for 14 days and then that precipitated us deciding to keep them both home full-time starting in October 2020.  

SO.....

Today is the first day I have to myself since March 2020!!!!!

The boys are going to be going to school all day on Tuesdays.  Jonah will come home at lunch for me to do catheter care, but then he will go back to finish the day.  The other days of the week, they will just be in school for the mornings.  But today is a full day to myself!  8:45-3:15.

I love the boys dearly.  I really enjoy doing school with them at home.  And I think the three of us (especially Ben and I) have really bonded over these past 10 months of togetherness.  Overall, it's been a great experience these past 10 months despite the difficulty of the pandemic.

But I am a bit excited to get some things done off my to-do list that have been put on hold for almost the past year because I've just been too occupied by boys to do them.  I'm excited to just do nothing for a few minutes today and RELAX! I'm excited to have a quiet house for a while today.  I'm excited to not multi-task for a few hours today and be able to concentrate on ONE thing only!  And it will be a relief to schedule appointments or run errands during these times on Tuesday and not have to ask older kids for help watching the boys.  

Last week was suppose to be my first free Tuesday, but we had a snowstorm.  

But today, nothing stopped the plan. The boys are at school, and I am free for a few hours!

I hope I don't come off sounding selfish.  

And for all I know, the boys will probably enjoy the break from me :)

So time to get stuff done- or nothing done.  Whatever, for a few hours today, the choice is mine!

FUN!!!!

ICE FISHING FUN and AN UPDATE

It's that time of the year again!  Andrew loves to take the boys ice fishing (one at a time) on my brother's pond.  The boys can catch 20-30 fish in about an hour so it's great fun for them.

As far as an update, January has felt like catch up time after the hectic December we had due to our  COVID experience.

Hopefully February will feel like we are more back into our normal groove.  That's my hope!

In regards to the boys' school, we decided to put them back in school for mornings only after the new year.  Additionally, we have now decided they will attend for the full day on Tuesdays.  Just a few baby steps towards more of a regular school experience for them.

We also are setting Ben up to have speech therapy outside of his school speech therapy.  Jonah has been receiving this extra speech for the past few years, but we hadn't pursued it for Ben yet.  However, now that we realize what a command he has of the English language after only being here 4 1/2 years, we think it's time to up the ante on how he pronounces his words.  He has soooo much to say (and command ☺), but he is not always easily understood by people outside of  his immediate core group.  Hopefully with this added speech therapy, his pronunciation will become more clear and understandable.  We are excited for Ben!

One thing I am not looking forward to for the boys or for me is their wonderful special ed teacher will be going on maternity leave in March.  The boys will miss her, and Ben, in particular, will take a bit to warm up to her substitute teacher.  However, to make things harder and sadder, this is their last year with this teacher because next year the boys are in MIDDLE SCHOOL!  Can you believe that?  We are going to miss their dear "honey" soooo much.  The boys pronounce her last name as "honey"- isn't that sweet?   We owe soooo much of their success to her hardwork and dedication to our two goofballs!

 

ROUGH END TO A ROUGH YEAR

 

The end of our year 2020 can be described in one word: COVID.

ROUGH:

For the 6 of us who live in the house, only 3 of us got COVID: myself, Andrew and Stephen.  We were very blessed that all 3 of our cases were mild.  

In some ways it is a miracle that the other 3, Lydia, Ben, and Jonah, did not also get COVID.  On the other hand, we still have the worry going forward for the next few months that they are still able to get COVID.  

However, we are not quite as scared of them getting it considering they lived 24/7 with 3 positive cases and did not catch.  Perhaps those 3 are very resilient or had asymptomatic cases.  We are especially surprised that our little boys did not get sick.  Remember, Jonah's doctors did feel Jonah would be considered a high risk for a more serious case of COVID and yet so far, he has sailed through quite healthy.  Not at all what we expected.

The rough part of us 3 getting COVID was the logistical nightmare that happens in a big family when you have to isolate and quarantine from each other.  In the end, it was about a 3 week period of figuring out who could be with who.  

Our particular situation was a bit more complicated because of our 2 boys having special needs so they require constant care and supervision.  It's kind of hard as a parent to just completely step back and not be part of their daily activities.  Then it got even more complicated because Jonah currently has his suprapubic catheter which requires careful daily attention and care.  Again, not just something a parent can walk away from.  

Fortunately, we are blessed with amazing older kids who really stepped in and cared for our boys while Andrew and I had to be isolated in the basement.  They both took a crash course in catheter care and handled that like pros also.  Our Lydia also took on the cooking responsibilities for all 6 of us which was quite a bit a work for her to do.   And our Abigail who lives 6 hours away was our faithful cheerleader encouraging us we would make it through this difficult time.

The other issue we had to deal with because of our COVID was Jonah's 12-17 surgery (to replace stent and catheter tube) had to be postponed 6 weeks because of Jonah's direct exposure to us.  Fortunately, his urologist assured us that with Jonah being on a daily antibiotic to prevent staph infections in the catheter tube, he wasn't too concerned about the delay.

I would say the most difficult part for me of COVID was the anxiety I experienced trying to deal with all of the above.  It was a rough 10 days.

ROUGHER:

Another aspect of our COVID experience was both of my elderly parents also caught COVID and had to be hospitalized.  Obviously we were very concerned about them and felt very helpless since we could only get updates on them by phoning their nurses.  

The miracle was that my mom, despite her complications from her stroke in 2019, had a pretty mild case of COVID.  She only needed to be in the hospital 5 days and only required 2 ltrs of oxygen for only first 2 days of her stay.

ROUGHEST:

My dad also got COVID.  However, he had to be hospitalized for 18 days because of low oxygen levels.  

Our whole family felt so bad for him being all alone in that hospital room dealing with the anxiety of what COVID can do to a person as well his worry over being away from our mom.  It was a hard 2 weeks waiting for him to heal enough for the doctors to let him come home.  

We are so grateful and happy and relieved that he is now back home with our mom.  Lots of prayers were answered!

So 2020 has certainly promised to go down as a very memorable year for many of us.  What a strange and scary turn of events starting last March.  It's been a roller coaster ride for sure.

On a side note, the question that we get asked often is "How did we get COVID?"  The answer is I'm not absolutely sure because we were soooo careful and cautious all these months.  We wore masks and we really tried to stay home as much as possible.  

Despite us getting COVID even though we were very careful, I still believe wearing masks and staying home as much as possible can slow/prevent the spread.  Just my personal opinion, especially after seeing my Dad go through such an ordeal with his COVID.

Now for some photos from my COVID isolation in our basement for 10 days.  Quite the adventure!

In the middle of all our COVID craziness, our Lydia got her first college acceptance letter.  Right now, this college is sort of her first choice, but she wants to see if other options come through before she officially decides.  Exciting for her!

Can't complain about the bed I had downstairs.  This is the bed that Abigail uses when she comes home to visit.  Very comfy and cozy and warm.  

Grateful I felt good enough to ride the exercise bike several times throughout the day.  Please ignore the messy pool table in the background.

A few days into my isolation, Ben joined me downstairs because he ran a fever of 99.9 for one evening.  Thinking he may have COVID, we brought him down by us to keep him away from Stephen, Lydia, and Jonah who at the time were still symptom free and testing negative.  

In the end, Ben tested negative a few days later so the fever was just random and unexplained.  So ironically, trying to protect the others, we actually exposed Ben more because of being downstairs with Andrew and I.  However, by some miracle, Ben still didn't catch COVID.  We did wear masks down in the basement, and I tried to have minimal contact with him down there, although that was easier said than done :) 

In an effort to keep Ben as safe as possible, we decided we would not eat together.  So Andrew ate in Lydia's bedroom in the basement, Ben got to eat in the family room, and I was stuck in the unfinished part of the basement.  Keeps one humble when you are eating with a toilet plunger 2 feet from you :)

And the old saying that "not a creature was stirring, not even a mouse" was not true in our case.  My second night in the basement, before Andrew joined me, I woke up in the middle of the night to the sound of a critter rustling in the toy closet.  Andrew came down to "rescue" me, but he never did find the mouse.  But the next morning he set up several traps.  As of the date of this post, there has been on mouse caught.  Perhaps my COVID brain just imagined the whole thing....

For those of you who usually get our Christmas card, I never sent them out because I actually prepared them the day before I started with COVID symptoms.  Needless to say, I decided to just shelf that idea until Christmas 2021.

So that was our end to 2020.  What a year it's been! 

IT KEEPS GETTING WEIRDER!

 

Middle of the night and catheter bag 

springs a leak.  

What would you do?

This is what we did:

1. Gorilla tape over the leak.  

2. Plastic bag over the catheter bag.

3. One of Jonah's pull-ups over the plastic bag.

4. Then, because we were still experiencing some leaking, we made Jonah a bed in a pool float.  

Jonah fell back asleep giggling.  

For Ben's online occupational therapy last week, he played a "Dress the Turkey" game.  Ben insisted the turkey wear a mask...

very telling of the times we are in.

This final photo isn't about weirdness.  It's pure happiness.  Stephen is home until January!  We celebrated a belated 21st birthday for him.  Boys surprised him with a Star Wars cake.  The boys (and the rest of us) are soooo happy to have Stephen home!

SO STINKIN' CUTE!

    

What else can I say?  

The photos speak for themselves!

Ben, 10 years old, 4th grade

Jonah, 10 years old, 4th grade

 

4 "H" UPDATE

Somehow October is finished already 

and November has started!  

Where does the time go?

Here's where our time has been spent:

HEALTH

With Jonah not feeling 100%, he often wants to just cuddle and be comforted.  

It's been a long road since Jonah first started experiencing kidney/bladder symptoms in early August, and it will continue to be a long road before things, hopefully, get back to normal.  

Jonah still has his suprapubic catheter.  It cannot come out yet because Jonah is hardly voiding any urine on his own.  Most of his urine output is coming through the catheter.  

The reason for this is partly because Jonah is very much off his routine of going to the bathroom because of all the issues he has had to deal with these past 3 months.  I am sad to say that whatever progress we had made in the toilet training area may be lost...  

Another reason is because it seems every time we try to have him off the bag for a few days, it seems like his back pain increases and his urine starts to get cloudy.  It's this repeating cycle of trying to have Jonah pee on his own, pain starts to increase and urine infection starts to set in so then have to go back to being on the bag (meaning all urine comes through catheter).  

In regards to the urine infection, it seems the doctors only treat them if they are causing a fever.  Otherwise, it is "normal" to have bacteria present when there is a catheter.  

So 2 weeks ago, Jonah started to be in a lot of pain and running a fever.  We cultured his urine, and he ended up having a staph bacteria present.  This was treated with antibiotics.  Jonah felt better during the 5 days plus he was on the antibiotic.  However, this past week, his pain has increased and urine is starting to look cloudy again.  He is not running a fever so no culture is being ordered yet.  However, he is now back on the bag again for a few days.  

Just a hamster wheel that keeps going round and round...

So what exactly are we waiting for or working towards?

Jonah's renal scan on 10-28 showed that his left kidney is still functioning quite well which is GREAT news.  

This means that doctor wants to continue giving that kidney time to come back down to normal size.  Jonah's ultrasound on 10-20 indicated the left kidney was still severely dialated despite the stent being in place since 9-4.  Since stents have to be replaced every few months, Jonah will have another surgery in the next 4-6 weeks to replace the stent and the catheter tube.  Jonah has to continue to be on the catheter because of his problem with voiding 100% on his own.  

Then the plan is for this new stent to be in place another 4 weeks.  At that point, I'm guessing another ultrasound to check if left kidney has reduced in size.  Doctor says he expects this to be a long slow process.  

The problem for me is all the pain Jonah keeps having to experience because of

1. His voiding problems    2. The presence of stent    3. The presence of catheter tube

At this point, I am frustrated and a bit weary about the situation because I feel so helpless for Jonah.

I keep hoping things will start to look up soon. It's been a long 3 months...

HOMECOMING

Some exciting news!  Our Lydia got chosen for Homecoming Court 2020.  Isn't she beautiful?  It was a rather different experience since it had to be Homecoming "COVID" style- court had to wear masks, no pep rally, and no Homecoming Dance, but I think Lydia will still cherished the memory!

HOMESCHOOLING

Jonah's writing paper from this morning- he nailed it!

Since late September when the boys were put in quarantine due to direct contact through school, we decided to keep them virtual and not put them at risk for exposure through school.  

Homeschooling them since March 2020 has been quite an interesting experience!  I keep learning more about them and how they process things.  I think the boys and I, especially Ben and I, have really bonded because of all this extra time together.  I actually love working with them.  It is so fascinating to watch them learn, and it's so exciting when things "click" for them.  Very rewarding and heart-warming.  

Of course, I feel bad they are missing the expertise from working in person with their teachers, but I am very grateful we at least get to work virtually with their teachers.  That helps me so much!  

So yes the school day is a challenge for me.  Things often don't go as planned and constant modifications are needed to make something work better for them.  Some days their attitudes or Jonah's health just aren't in the mood for learning.  I'm learning to be flexible and just do the best I can.  They're only 10 years old- they have a lot of learning opportunities ahead of them.  It's ok if not every day is the most productive school day.  

The funny thing about the above photo of Jonah's writing sheet is that he did this sheet ALL BY HIMSELF!  I wasn't sitting by him to help prompt him or anything.  

Since Jonah often doesn't feel that great, he has an even harder time staying focused on school.  The other day, I started to think about what it must feel like for him to have all these demands placed on him to do school work when most the time, it hurts for him to just move around.  So I decided, why not just let him do his entire school day from the love seat?  Why not just let him work at his own pace for some of the activities instead of constantly trying to motivate him to do more?  

Yesterday I set him up on the love seat with his own Chromebook so he could be virtually present in his classroom.  Ben and I set up at the dining room table as usual.  I gave Jonah the worksheets that he needed and his pencil, and decided for that for 1 hour, I would just let Jonah fend for himself.  I would stop bugging him.  He has enough of my interference to put up with for 24/7 because of school and all this extra personal/medical care he requires as of late.  Maybe he just needs a break from being told what to do.  

Well, the little guy blew me away!  Both yesterday and today, he just started doing the worksheets on his own.  He didn't do them perfectly, he didn't always finish them completely, but for the most part, he stayed on task.  He was very proud to show me and his online teachers his work.  

It also helped him to just stay put in one place all morning.  I think it definitely helped with his pain management.  I'm hoping we can continue with this set up since as I mentioned before, we have many more weeks of recovery ahead of us.

The other benefit so far is I think Ben enjoys having my full attention because I do sit with him at the table.  Ben requires less prompting so I don't really have to worry too much about over-nagging Ben like I do with Jonah.  

Quite the adventure!

HILARIOUS!

We decided we would give our dog the extra special treat of taking him along camping with us for our last weekend of camping in mid-October.  Isn't this what good dog-owners do?

Well, apparently our dog is not a camper.  

At the campsite, he sniffed around for about 30 minutes when we first arrived.  Then he ran to the van and hopped in the back and wouldn't get out.  After about an hour of waiting to see if he would join us by the picnic table, we decided to call it.  Lydia took him home and stayed with him that night.  

The dog is 13 years old- maybe he just thought he was too old to have to rough it!

So that's our update.  

Lots going on in this crazy time we live in!  

OH MY GOSH!

Incidentally, "Oh my gosh" is one of the cutest phrases that Ben says...

But it is also how things have been feeling around here lately...

What a whirlwind!

Jonah: still not feeling 100% after his surgery.  Things are slowing improving for him, but I don't think he will feel completely himself until he is rid of both the catheter and the stent and, hopefully, his left kidney is back to normal.

Jonah and Ben: in quarantine 14 days because of a direct exposure at school.  This was not totally unexpected.  Numbers are ramping up in our area so we knew the risk of exposure at school was probably increasing also.  But it still gave us a scare.  

The good news is they both tested negative 5 days after exposure.  We had them tested because on day 3 of exposure, because Ben started to have cold symptoms including a low-grade fever.  

However, the boys still need to be in quarantine for the full 14 day period despite the negative test results.  

School: after our scare with the boys, we did some soul-searching and realized that virtual school was probably the better choice for our boys at this time.  With Jonah still under the weather because of his kidney issues, it would not be good for him to catch COVID on top of these other issues.  Obviously, we can't 100% protect the boys from getting COVID, but keeping them home from school keeps them a bit more safe.  We will stay virtual at least until Jonah is completely recovered.

A shout-out to our school: they have been incredible about working with us as we keep changing the plan because of the curve balls that have come our way since late August/September.  And now, they are offering an on-line experience combined with materials I can work on with the boys so that they don't have to tied to a screen for hours a day.  Obviously, 100% in person school would offer the boys the most support for their needs, but I feel like the boys will be getting a pretty decent education doing it this way, at least for the time being.

Lydia: When the boys were put into quarantine, we decided to also have Lydia switch to virtual.  This is because the reality of having 2 little boys with DS is that you cannot isolate them from the rest of the family.  So if they would have gotten COVID from their exposure, the chances would have been pretty high that the rest of us would have gotten it too.  

Therefore, we decided to keep home whomever we were able to keep home: so Lydia and myself have hunkered down at home during this 14 day period also.  Of course, with the boys testing negative, Lydia could go back to school at any point, but she/us are thinking about possibly staying virtual for her also.  Much to think about.

Flexibility is the key word for us lately.  Things can change so quickly.  At this point, you just never know when you might be exposed to COVID since the numbers keep increasing for our area.  Of course, being exposed doesn't mean you automatically will get it, especially if we all take precautions and wear masks and social distance as much as we can.  For now, this is our new normal...

From our camping trip a few weeks ago.  

Aren't they handsome?

I just love this photo of Jonah.  He looks so happy which has been hard for him lately because of how much discomfort he has been in.  

Ben likes to come up with what he thinks are cute photo ops and then beg us to take his picture.  

I don't know why he combined a Mickey Mouse hat with a blanket as a cape?