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! 

FEELING LIKE A GROWN UP!

Because of COVID, we did not have our usual large gathering of family and friends.  

This meant that I had to provide all the food for my crew of seven.  

I've never had to make an entire Thanksgiving meal.  Usually with the large gathering, we divvy things up and each person makes 1 or 2 dishes.

But this Thanksgiving it was all on us.

I feel like a real grown up.

Full disclosure: 

I did assign my family 

some of the cooking duties.  

Abigail: Green Bean casserole

Stephen: Sweet potato casserole

Lydia: Pies

Andrew: Cranberry relish

 So together, I think we did pretty good for our 1st Thanksgiving going solo. 

However, I do truly hope next Thanksgiving things can be back to "normal".  

Our Thanksgiving Feast

Getting Ready to Eat

The boys were so excited to have both Abigail and Stephen home for the holiday.  They love having the whole family under one roof as much as I do!  

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

 

(a very unscientific) PERSONALITY QUIZ

 

MOVIE CHARACTERS THE BOYS LOVE:

MOVIE: ALADDIN

Ben: Jafar   

Jonah: Genie, Aladdin, or Abu

MOVIE: MUPPET MOVIE

Ben: Animal

Jonah: Scooter, Walter, or Fozzie

MOVIE: LION KING

Ben: Scar

Jonah: Simba or "Hakuna Matata" characters- "No worries"

MOVIE: SLEEPING BEAUTY

BEN: Malificent

JONAH: 3 Fairies or Prince

MOVIE: SNOW WHITE

BEN: Mean queen

JONAH: Dwarfs or Prince

MOVIE: BEAUTY & THE BEAST

BEN: Gaston or the Beast when he's mean

Jonah: Chip

I could continue with more movies, but I'm thinking you are seeing the same pattern I am seeing.

Pretty revealing.

Should I be concerned that Ben always identifies with the bad guy?  

Or since I have enough to worry about in life, I'm just going to frame these results as Ben will be the fierce protector of the more innocent and naive Jonah.  

The perfect pair.  

They are each other's ying and yang.

SOME GREAT RESOURCES

Hard to believe I've been "homeschooling" the boys since March 2020!

Something I thought I would never do.  Not because I don't agree with homeschooling.  I do think it can be a very valuable and worthwhile experience.  We home schooled our 3 older kids during their middle school years, and we loved it.  However, with the boys both having special needs, I just figured home schooling them would be way above my pay grade.  And not beneficial to them because school offers them access to so much specialized and adaptive learning.

Well, COVID had different ideas than me so that is why the boys are home with me.

So over the past months, I have found some really cool resources that have helped us in our home school experience.

1. The following math manipulative is incredible!  I think it really has helped the boys learn the concept of counting on when doing addition.  

Click HERE for Amazon link to this MATH MANIPULATIVE

2.  This 100's board has been very helpful for the boys in learning how to rote count by 1's and 10's.  Instead of just looking at a paper 100's chart, this board lets them feel, touch, and actually place the numbers as they count.  Just sensory/tactile way to reinforce what we are learning.

 Click HERE for Amazon link to this HUNDREDS BOARD

3. IXL is an website that we use daily.  We use the free version which means we only get 10 questions a day.  However, that works perfectly for us.  Currently we are doing Preschool Language Arts: Reading Strategies and Vocabulary.  We bring the website up on our Ipad so the boys can use the touchscreen to select their answers.  

Click HERE to visit IXL website

4. Boom Cards- our speech therapist has provided us with a link to her cards, but you can also access quite a few of the resources for free.  A great interactive tool we use to work on speech.  We do this on our Ipad.

Click HERE for link to Boom Card website

5. TouchMath App- one of the math curriculums our boys use is Touch Math.  This app offers great practice and reinforcement of this method for counting and addition.  The basic level is free.  I can't remember if I paid a minimal amount for the upgrade.

Click HERE for more info on the TouchMath app

Finally, I use Ipad time as an incentive/reward for the boys doing their work with me.  These are the apps I like to offer them- they are both fun but also educational.  I also like these apps because they boys can explore them on their own without me having to be right there next to them.  We do sometimes do an activity together from the apps, but it's always nice to find a way to keep them occupied so I can get something done around the house for a few minutes here and there throughout the day.

1. StarFall- we do pay the annual fee for this one.  SOOO worth it!  We use for math and reading.

2. PBS Kids Games

3. Khan Academy for Kids: Math, Reading, Logic

4. Kindergarten Math by Alligator Apps

5. Writing Wizard: Handwriting numbers, and upper and lower case letters

6. ABC Keyboard: beginning keyboarding

One more thing.  Our boys LOVE to play with large blocks.  They build things with them, but they also use them to throw around and hit to reenact action scenes from shows they watch.  

We have had 2 sets of these blocks from Melissa and Doug which I love, but they do not hold up very long with the boys' rough play.

I know the following blocks are a bit pricey, but for the way the boys play with them, these foam blocks are holding up much better.  We have one set (12 blocks).  I'm thinking of ordering another set for Christmas.  Very nice and soft and so far, very durable.

Click HERE for Amazon link to LARGE FOAM BLOCKS

 

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!