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!  

HAPPY HALLOWEEEEEEEEEEEN!

Our boys like to emphasize the "EEEEE" part of Halloween!

Every year, my parents throw a Fall Fest for the grandkids/great grandchildren.  

This year we had to do it COVID style.

So the boys got their own personal hayride around Grandpas's field.  What fun!

Costumes this year:

Ben: Bear from Masha & Bear

Jonah: Larry the night guard from "Night at the Museum" movie.  Don't make the mistake of referring to Jonah as a police man- he will get very upset with you.  He's Larry, and he takes it very seriously :)

SOMEONE’S WISHING

 

Jonah “talks” about Disney World often.  He does this by finding Florida on a map and then continuously putting the map in your face saying "Dney".  

Subtle, right?

Yesterday, he upped the ante.  He presented me with the following note.  He had found the map and proceeded to copy the word "FLORIDA" into his notebook.  

Something to note, getting Jonah to write neatly and properly has been a REAL struggle as of late.  He gets distracted, bored, or hasn't been feeling well enough to concentrate on school.  But will you please notice how perfect his letters are?  Yes, he forgot a few letters, but I am pretty amazed what he came up with!

After he presented me with this note, he got out 3 lunch bags ☺ and started to pack for Disney.  

After his "packing" was done (books, toys, pencils etc), he brought his "suitcases" to me.  I explained to him that we wouldn't be going to Disney anytime soon because so many people are sick.  This is how we explain COVID to the boys.  This is something I have said to Jonah before so I didn't really think much of our interaction.

However, a few minutes later, I found Jonah sitting on the stairs silently sobbing.  

Let me explain.  Both boys have levels of crying.  The first level is for dramatic purposes and often means nothing is really wrong.  Then there is the real cry when one of them is hurt or sick.  Then there is this silent sob level which is what both of them do when they are feeling a deep sadness.  For Jonah especially, real sadness doesn't happen often because he is generally a happy little fellow.  

So for me to find him silently sobbing yesterday about not being able to go to Disney was quite heart-breaking.  

Nothing I could do about it except acknowledge his "pain", hug him tight and tell him I loved him and not to give up hope.  

Someday, little buddy we will get you to Disney...when this world is just a little less crazy.

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?