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?

 

ANOTHER THING THAT'S STILL THERE

The catheter.  Still there. 

We kind of thought (hoped) the suprapubic catheter for Jonah would be a 2 week thing.

Now it sounds like it will there until his 10-20 appointment/ultrasound.

Jonah, not surprisingly, has thrown us a few curve balls.

After a week of being on the catheter bag 100%- meaning Jonah was not peeing on his own, it was all draining right into a bag, the doctor directed us to start cycling Jonah.  This means that for 2 hours, the catheter was turned off.  Then we would take Jonah to the bathroom and have him try to pee on his own.  After that attempt (and hopefully success), we would turn the catheter back on to see if there was any urine left in the bladder.  Then repeat the process in 2 hours again.

This cycling was being done so the doctor could start to assess how efficient Jonah is with voiding.

First thing, Jonah did not prove to be very efficient.  Most times, we would empty out way more than he peed.  So something is preventing Jonah from emptying his bladder completely.  A very big piece of the puzzle that will have to be figured out.

Second, after about a week of cycling, Jonah started to show signs of another infection.  He would be very tired and lethargic at times.  He started to complain of lower left back pain.  And using urine strips we bought on our own, protein, leucocytes, and blood started to show up in his urine.

Saturday night Jonah started to be in extreme pain, holding his left side.  Then he started to vomit and run a 99.1 fever, although fever only lasted for 30 minutes.  We still felt like Jonah was clearly showing us signs of infection and brought him into the ER.  

The ER tried to tell us that constipation was the problem for the pain.  They gave Jonah an enema which was successful, but Jonah still left for home holding his left side in pain and feeling sick to his stomach.

I think constipation certainly was contributing to the problem, but I don't think it was the primary problem.

However, Sunday and Monday, he complained less pain and there was no fever.  

Monday we had to see the pediatrician for his flu shot.  While we were there, our wonderful pediatrician took a urine sample to run a culture.  

Sure enough, Jonah does have a bacteria growing, however it is one common to the presence of a catheter.  Because Jonah doesn't have fever and seems to feel much better, our urologist is not treating him with antibiotics at this time.

Instead, he is focusing on why Jonah started to develop such extreme left back pain again.  He thinks that Jonah trying to pee on his own during our week of cycling is causing some sort of back up of urine to the kidney again, thus causing the pain.  

So for 2-3 days, we are back on the catheter bag again 100% with no attempts by Jonah to pee on his own.  Over the weekend, we will try cycling again, but this time go every 3 hours and see how Jonah reacts.

Obviously, if you ask me, there is some big issue that has to get figured out with what is happening when Jonah tries to push out urine.  Another big piece of the puzzle.

On one hand I am so grateful for the catheter because it is our safety plan to make sure Jonah is voiding properly and safely.  However, I feel bad this little boy has to deal with this for way longer than I anticipated.  

The good news is he and we are handling the catheter care. The care for us isn't that complicated- just practicing good hygiene, emptying bag every couple hours or so, and changing the dressing each evening. 

And the past few days, Jonah hasn't said anything about left back pain so we are very grateful for that!

So that is the update on Jonah and his kidney/bladder adventure!

 

IT’S STILL THERE

Ben came home to us in July 2016, so it's been a little over 4 years that he's been with us.

He has made amazing progress emotionally, socially, behavior-wise and with his English vocabulary.   I am so impressed and proud of this little boy who has faced so many challenges since the day he was born.

However, every once in a while, I get a glimpse into how much of his past life is still "there".  Things he is still processing, things he is still trying to get over, and things he still thinks will happen to him even though he is in a family now and not an orphanage.

Yesterday provided one of those moments.

When we were done with afternoon school time with me, the boys had room time.  

NOTE: Room time is not a bad thing.  Each of their bedrooms has a wide assortment of toys and books.  The boys can choose if they want to play or rest for bit.  Room time is a chance for all of us to get a break from each other ☺

Usually before room time, I have both of them use the bathroom.  For whatever reason yesterday, I asked Ben if he had to go, he said no, and I didn't pursue it.  My mistake.

While they were up in their rooms, I had to make some phone calls.

As I was in the middle of an important phone call scheduling one of the zillions of medical appointments it feels like, I heard Ben crying.  When I got off the phone I ran upstairs to find him hunched over on his bed, holding his pants, sobbing.  When I came in the room, he immediately quivered and said "I sorry Mama, I so sorry."  

Now let me tell you something about Ben.  For the most part, remorse and regret are not real big emotions for Ben.  If he misbehaves, it usually takes us explaining that what he did was wrong and then making him sit in time out so he can really think about what he did.  Then we really have to coax him to say sorry for what he did.  It has gotten better over the years, but saying sorry is very difficult and something Ben really resists doing.

So for Ben to have this immediate reaction when I walked into his room is very unusual.  

Let me also note that bathroom issues have never been something that we have gotten upset with Ben about.  Mainly, because he rarely has accidents, and also because we can tell this is an area that Ben has extreme fear of punishment about.

I don't know what happened to him in that orphanage when he had bathroom accidents, but it must have been quite severe for him to still react in great fear after 4 years.

Yesterday, I rushed him to the bathroom and then reassured him I was not mad at him, and it wasn't his fault- I should have remembered to make him go before room time.  I kept telling him how much I loved him, and that it was ok.  No big deal.  

It actually ended up being a good bonding moment for Ben and I- another brick being layed on our wall of trust, I guess.  

But it still breaks my heart  that even after all this time with us, there is still a small part of Ben that doesn't trust us completely.  He still reacts out of fear that stems from 6 years of being a bothersome kid in an orphanage instead of loved and valuable member of a family.

Oh Ben, there is so much going on in that little head of yours.  When you present angry, forceful, and aggressive, you are probably really activating the survival skills that kept you safe for your first 6 years of life. You have come a long way in trusting us, but there is still a long way to go.  Our family with you in it is still a work in progress.  Marathon not a sprint, right?  

We love you Ben.  We always will no matter what you throw at us.  I hope someday this will be your gut reaction to a scary situation instead of fear and trembling.

Now on a lighter note, here the boys are setting up for a game of chess...who knows, this might end up being their game...

And Engineer Jonah constructed quite the tower this morning while I was getting ready.  I'm quite impressed with his symmetry and balancing work.

 

GOOD NEWS/BAD NEWS

 

Jonah had his follow-up appointment today along with a renal ultrasound and xray.

GOOD NEWS:

1. Stent is still properly in place in the left kidney/ureter and bladder.  

2. Right kidney is reduced in size and looking good!

3. Jonah's urine looks clear and good!  No sign of infection.

4. We can start turning off the catheter and letting Jonah try to void on his own.  Then as a extra precaution, we will turn on the catheter to ensure bladder is completely empty.  This will also give us an idea of how efficiently Jonah is voiding on his own.  This process is called "cycling".

5. Jonah can try school starting on Thurs or Friday.  I am leaning towards Friday to give him the next 2 days to get use to "cycling".  

6. Jonah can start horse riding lessons again.  I didn't expect that!

7. Jonah has seemed very tired the past few days, but doctor is not concerned about that.  As long as there is no fever or vomiting, he thinks we are ok.

BAD NEWS

Left kidney is still significantly enlarged.  On 8-31, pre-surgery, it measured 17 cm.  Normal should be around 9 cm.  Today it was only down to 15 cm.  So there is progress, but the doctor was hoping for more improvement at this point after surgery.  

He is very concerned there is damage to the left kidney from the hydronephrosis, but it is too soon to do a renal scan which would check the kidney function.  

PLAN OF ACTION

Monitor Jonah's urine output for the next 30 days, and another ultrasound on 10-20 to check on left kidney size.  Hopefully more improvement in next 30 days!

AND NOW WE HAVE TWO TEN-YEAR OLDS!

Ben turned 10 in June.  

Now today Jonah turned the big 10!

This boy brings so much joy and fun and happiness to our lives.

It's like having a front row seat everyday to the best comedy/feel-good movie!

I love watching Jonah play and learn and interact with his siblings.

I love watching the relationship grow between Ben and Jonah.

I can't believe it's been 10 years since we welcomed this bundle of joy into our lives!

Some of Jonah's favorites this past year:

1. Star Wars- movies and soundtracks

2. Batman 

3. The Muppets movie from 2011- actually becoming one of my favorite movies

4. Frozen 1 and 2

5. Bohemian Rhapsody song

6. Recreating scenes from books and movies

7. Making movies with Stephen

8. Listening to music with Abigail and Lydia

9. Talking about Halloween and Christmas and birthdays

10. Packing suitcases

11. Frisbee

12. Basketball

13. Swimming

14. Writing and drawing

This is one busy and creative fellow!

Close to his "birth moment" at 7:50 a.m. telling us he's turning 10!

Wearing the birthday hat school sent home for him

Aunt Jane visits in her shark costume!  

Party Table ready to go Star War style!

Darth Vader Birthday cake- 

sorry photo is positioned wrong

Singing "Happy Birthday" and 

getting ready to blow out candles.

I'm guessing that isn't really recommended during COVID-19, but we live together so...

Cute video, but I'm embarrassed about the baskets of laundry in the background- clean, but not folded yet- kind of common around here :)

And yes, our birthday boy has never a had one bite of birthday cake for his whole life!  He doesn't like cake, cookies, brownies, candy, etc.  But he will eat ice cream so that is how he celebrated for dessert.

Star Wars gifts: 3 books, action figures, and the Millenium Falcon!  

Ben was super excited for these gifts too!  

Very proud of how both of these boys share everything with each other.  

What a fun day!