BEING FLEXIBLE: GOOD AND BAD

Obviously life with two boys with Down syndrome requires us to be quite flexible.  Our plans don't always go how we expect because of behavior issues that might come up with the boys.  Flexibility in this case is a good thing for us. 

When it comes to kiddos with Down syndrome tending to have hyper-flexibility in their muscles, it's not always a good thing. 

This is a tale of both good and bad flexibility.

GOOD FLEXIBILITY SITUATION ONE

We went camping this week.  Ben had a nasty eye infection and then came down with a nasty cold.  NOTE: we were reasonably sure he did not have COVID because Lydia and Stephen have been dealing with nasty colds for the past week, and they tested negative for COVID.

Now here are a couple things about Ben when he is sick:

1. Ben is so infrequently sick (which is GOOD) that when he does actually get sick, I think it really bothers him to not feel good.  He doesn't know how to handle it because he is so unfamiliar with feeling sick.  In the past, Ben has dealt with a cold for 1-2 days and then felt better.  But this past week, he started with this eye infection on Sunday and a cold on Tuesday.  Today, Saturday, he is just starting to feel a bit better.  This is a long time for Ben to be under the weather.   

2. Ben does not know how to not infect others.  He forgets to cover his mouth/nose when coughing/sneezing.  He touches every possible surface he can after touching his eyes, mouth, and nose.  Sometimes it feels almost intentionally mean on his part, as if because he is sick then he is going to try and make the rest of us join him in his misery.  I'm not sure if he is cognitively capable of such manipulation, but it sure seems like this might be happening.

3. I think a sore throat and stuffy nose really bothers Ben as a sensory issue.  When he is sick, he tends to make gross nose/mouth/throat noises in a effort to clear away the weird sensory things he is feeling.  I try to empathize with his frustration, but it's gross listening to all this snorting, wheezing, gurgling.  

4. The few times Ben has suffered from the stomach flu, he is very scared that we are upset that he is getting sick.  He is worried we will be angry about making a mess.  Of course, we don't get upset with him.  We are guessing that in the orphanage he must have been "punished" for making a mess when being sick.  We would never treat a child that way.  It's very sad that is what Ben had to deal with as a little kid.  This fear while having the stomach flu is one of the few times Ben presents a real sad.  Usually Ben's sad presents as mad.  But when Ben has the stomach flu, he presents as this very sad and pathetic little boy which just breaks your heart.  He is also very open to comfort and affection which is usually not something he accepts easily.

Ben suffering from a cold, however, is a very different experience.  I already mentioned about it seeming like Ben is purposely trying to spread his germs.  He also becomes very defiant and difficult.  I don't know what is going on his mind, but it seems like he is trying to do everything he can to make us NOT want to comfort or care for him.  

So needless to say, camping with Ben being sick with an eye infection/cold was not the easiest experience.  We had to be flexible with our plans because it often meant we quarantined Ben with one of us so that he would not get the others we were camping with sick.  Part of me felt bad that he felt so lousy during this trip, but part of me also grew very frustrated with his defiance.  I had to try to be flexible with my emotions and try to show love and compassion at times when I felt the exact opposite.  Just being real here...

BAD FLEXIBILITY SITUATION ONE:

Because of Jonah's hyper-flexibility, his kneecaps can easily slip out of place.  This happened to Jonah's left knee on Wednesday night.  It was very painful, caused his knee to swell up, and made Jonah refuse to walk for all of Thursday.  

BAD FLEXIBILITY SITUATION TWO:

Because of Jonah's increased kidney swelling, we are on a strict 2 hour bathroom schedule with double voiding each time.  When you have a little boy who is pain and doesn't want to move, it's very hard to bathroom him both from a physical standpoint and mental standpoint.  He got very stubborn and defiant.  So we were very concerned that this knee injury might negatively affect his required bathroom schedule.  Fortunately by Friday, he was able to move easier so the bathrooming got easier as well. 

GOOD FLEXIBILITY SITUATION TWO:

We had to be flexible in our plans for hiking and beach time because Jonah was just not up to these adventures.  We considered coming home early but decided we might as well sit around our beautiful campsite instead of just sitting around at home.

UPDATE ON JONAH'S KNEE:

Even though Jonah was walking better today than yesterday, his knee gave out on him once this morning and once this afternoon.  This caused him great pain.  Plus the swelling has not went down.  

We decided that maybe we were doing more harm than good by letting him move around without knowing exactly what was going on with that knee.  And we felt the knee needed to be wrapped or braced to prevent it from slipping out again.  So we took Jonah to urgent care thru Children's Hospital.

Xray showed no fracture which is good.  It did show the patella is to the side when it should be in the middle.  In order to know if anything is torn, Jonah would need an MRI.  Urgent care consulted with ortho, and it was decided that Jonah would use a knee immobilizer and walker for the next few days as well as regular icing and advil.  Hopefully this will help the swelling go down.  Then next week we will check in with our pediatrician who will decide if ortho should be seen to evaluate for a tear and to discuss how to prevent this from happening again and again.  

  

THIS IS WHAT 12 LOOKS LIKE!

Our dear sweet but sassy Ben turns 12 today!

He has now been home with us for 6 years, as long as he was in the orphanage.  

Amazing to see the progress he has made in learning to be a son, brother, student, and friend.

This boy is quite a kid!

Today his birthday will include going camping with friends, picking out his own cake on the way to the campground, and enjoying cake and presents with our friends tonight!

Our last year before he turns into a teenager...

Birthday boy getting ready for his Culver’s bday meal on the way to camping.  We were suppose to get pizza takeout for the campsite, but we are about 3 hours behind schedule😕.  Truck needed to be looked at today, and it took longer than we hoped.  Oh well, cake and presents will still happen at the campsite so that’s good!

Birthday boy getting ready to blow out his candles and eat cake.  Unfortunately, this wasn't the best birthday ever for our Ben.  He was sick with an eye infection and then the next morning he woke up with a bad cold.  So hindsight, he shouldn't have been blowing on his cake...  And, he didn't like his cake because it didn't have frosting, just a sugar glaze.  So he refused to eat it.  The man knows what he wants, I guess!

He did, fortunately, enjoy his present: a new 3 wheel scooter that works up to 110 lbs!  

Jonah can maneuver on it pretty good too!

 

CHATTER MATTERS

We as a family attended a speech device camp last week called Chatter Matters!

What an amazing experience!

Click HERE for camp information

The camp staff was incredible: 5-6 speech pathologists, 3 of them experts in AAC devices, and then around 20 speech pathology students.  All of these people plus the organizers of the event were available to help and work with our kiddos and us parents!  Plus the camp brought in representatives from the various speech device companies to offer individual support for us and devices!

Our experience with getting a speech device is this:

1. We first applied for the device in Fall 2018. Jonah was eight years old.  Prior to this, despite Jonah having significant speech delays, we had no knowledge a device could even be a possibility for Jonah.  Sometimes I wonder the "what ifs" if we had started Jonah on a device at an earlier age.  

NOTE: I always suffer from parent guilt about not knowing enough, doing enough, or pushing enough. 

However, we were using communication boards with him from age 3 which is basically the non-tech version of a speech device.  And given Jonah's mischievous and impulsive personality, eight years old probably was the the time maturity-wise to bring this piece of technology into his life.

2. We waited a LONG time for insurance to approve the device for Jonah.

3. Even though the device is officially prescribed for Jonah, our intent is to also use it for Ben.  Could we probably apply for one for Ben also?  Probably, but at this point we don't want to go through that involved process.

4.  We finally received the device the 2nd week of March 2020.  Please note that date: because COVID shut down the school and the world by the 3rd week of March 2020.  This meant we had no support from the company to learn the device and how to use it.  We also had no opportunity with school because those doors were also literally closed.  

Then for the start of the 2020-21 school year, Jonah got sick with his kidney issues.  Between Jonah being sick and us trying to keep both boys safe from COVID, the boys were virtual school from Sept 2020 to Feb 2021.  When they did finally return to in person, everyone was in catch-up/getting adjusted back to in-person mode so the speech device was not the primary concern on any of our minds.  So all this to say that since we got the device, I have just been bumbling along mostly on my own learning how to use the device and how to implement it into our boys' lives.

5. Sometime in the fall of 2021, I was very frustrated with the device.  I felt like I didn't know what I was doing which meant I was also confused about what the device was suppose to be doing for the boys.  On a whim, I googled something like "speech device camps or seminars" and up came a Google entry for "Chatter Matters camp".  I opened it expecting it would be some camp in another part of the country.  To my great surprise and excitement, this camp is at the University of Wisconsin Whitewater- just less than 2 hours away from our home!!!!  I decided to apply for both boys to attend, and we got accepted!  And our long-term care waiver covered the cost of the camp!

So that is the story of how we came about attending the camp.

Here are some of the fun activities the boys got to do while at camp: golf cart rides, painting, water games, golf cart rides, bowling, video games, air hockey, golf cart rides, wheelchair basketball, dance party, golf cart rides, talent show, and golf cart rides.  Can you pick up on the favorite activity?

The schedule at camp was that in the morning the boys would do fun learning activities using their devices while we attended classes and seminars for parents.  In the afternoon, there were family fun activities and then another seminar for the parents.  Then in the evening there was a big event like bowling, dance party or talent show.

Here are some of the fun activities the boys got to do while at camp: golf cart rides, painting, outdoor/water games, golf cart rides, bowling, video games, air hockey, golf cart rides, wheelchair basketball, dance party, golf cart rides, talent show, and golf cart rides.  Can you pick up on the favorite activity?

Here is what the camp taught us:

 Things we learned

 1. Boys are at the point where the speech device should be used as an augmentation device

(clarifying what they are saying when someone can't understand them).

Click HERE for power point explaining the purpose/use of speech device

 2. General/pre-programmed words/word lists are probably the best route to take because it is/will be too cumbersome to keep up with entering specific school lessons/current situations on the device. 

 3. Going along with #1 about device being used to clarify speech, if the boys can say a word clearly (ie. more, thank you, hello etc), there is no need to make them have the device say that word also. 

 4. Obviously verbal speech is the easiest and most efficient form to communicate.  This means the boys will always want to use that option first and foremost, and this is ok.  But the goal is for the boys to understand that the device is there as an additional communication tool just like sign language/gesturing or writing down their thoughts is an option for them.

 5. Because verbal speech is the easiest and most efficient, use of the device-even with practice/training- will probably never feel fluid and completely natural.  But this is ok.  The "unnaturalness" of the device hopefully outweighs the sadness of not being understood or noticed.

 Things we would like to see for use of device in everyday life:

 1. Conversation Partner: "I'm sorry I didn't understand what you just said.  Could you get your device to help me understand?" AND/OR

2. Boys access device when they are not being understood.

 How do we get to that point?

 1. Model device use wherever we can, even for the simple words just to emphasize the point that device can speak for a person.

 2. Set up situations at home/school where even if we know what the boys are saying, we say "I'm sorry I didn't understand etc" and then help them use device to clarify what they were saying.  By using a situation where we know what they are saying but we pretend we don't, we can be accurate in helping them search for the clarifying word.

 3. After a successful phase of set up situations at home/school, then try set up situations out in the community where the environment will be more variable but the person they are speaking to will be a "plant".

 4. Hopefully, eventually, because boys will have their devices accessible to them, then when someone can't understand them, either that person will request clarification by the device or the boys will do this on their own initiation.

 Things needed for the above training

 1. Constant use/access to the device at home/school and eventually out in the community

 2. Peer training?

 3. Staff training?

 4. Family Training

 5. More inclusion of the speech device in the IEP?

This is one of FOUR camp helpers 

Jonah proposed to during the week :)

This book was given to each camper.  It is a very neat book because it comes with a simple AAC device that includes basic words which could be used independent of the book.  The book then shows a child how to use an AAC device.  Highly recommend it for speech therapists or families just starting with a device.

Click HERE for Amazon link to book

Click HERE for Chatter Matters Video

THAT’S A WRAP!

 Stephen graduated from Carleton College yesterday!

Super proud and excited for him and his next adventures!

Lydia had to work so she couldn’t join us for the celebration 😕

PARTICIPATING

5th grade attended the "Stomp" performance.

Jonah was scared to sit in his balcony seat so their aide let him find his safe spot on the aisle steps.  

Sometimes participating means adapting, 

but that's ok!

Ben handled the "Stomp"performance like a pro.  Since the boys' main friends at school are a group of girls, Ben is giving his "I'm quite the guy having all these girls around me" look.  

Sometimes participating is just plan fun!

The school staff made a point of having the boys each lunch with their peers.

It's so neat to see them just be part of the group.

Sometimes participating just comes naturally!

PS: These photos were in the school yearbook so I don't feel uncomfortable sharing them on this blog.

Jonah and Ben's homeroom class voted Jonah as the MVP of their group for this school year.  Jonah was so proud to go up and receive his reward.  We are so proud of him, and we are so happy the kids in their class appreciate and recognize the boys as valuable members of their class.

Sometimes participating can be rewarding!

Thank you to all the teachers and aides at school who work so hard to make our boys the best they can be. 

These boys aren't just participating, they are participating in a MEANINGFUL way!  

And that's a wrap- 

5th grade is done, and 6th grade is our next stop. 

Summer plans include summer school, school with mom, speech device camp for 4 days, swimming, baseball, and camping! 

 

PUZZLE STARTS WITH "PEE"

 

I hope someone gets my urology humor in the title...

Today was Jonah's 6 month urology check up.  

His last kidney/bladder ultrasound was in December 2021.  At that time, the left kidney was slowing decreasing in size.  The doctor was quite hopeful that if we waited for 6 months, we would see more decrease in that left kidney size.

Unfortunately, that is not what we saw in today's ultrasound.

Left kidney was 13.9 cm in Dec 2021.  Today it was 15.6 cm.  At it's largest back in Aug 2020 when all this trouble started, Jonah's left kidney was 17.3 cm.

Today the right kidney was also slightly larger from Dec 2021, 9.6 from 9.4.  But the more concerning thing was the doctor could see some slight dialation in the right kidney which had been normal in December.

Jonah's bladder was also very distended.  Normally someone Jonah's weight would be able to hold about 250 ccs in his bladder.  Jonah's bladder today had over 500 ccs of urine.  

Once again, Jonah is presenting a puzzle to the urologist.

What he thinks is happening is that Jonah doesn't adequately empty his bladder.  This is happening because of one or both of these reasons:

1. Jonah doesn't know, doesn't try hard enough, or loses focuses and doesn't pee completely when he goes to the bathroom.

AND/OR

2. When a bladder is stretched out or distended, it can start to not empty efficiently.  So Jonah may be doing things correctly, but his bladder may not be letting the urine out the way it should be because of being so big and loose.

Next thing, because Jonah is not adequately emptying his bladder, this causes pressure to rest against the ureter openings (right and left) up to the kidneys which is causing the kidneys to not be able to adequately drain down to the bladder.  Jonah's left kidney is more susceptible to this pressure blockage because of that ureter is the one that needed to be reconnected when Jonah was 12 months old due to a congenital defect.  There may be scar tissue from that surgery that is making this side "thicker" and more easily blocked.  

If this were another child that the doctor was seeing this in today, he would probably recommend immediate surgery to go in and try to poke through and stretch that ureter to bladder connection.  He would also insert a temporary stent until things could drain and get back to normal size.  A suprapubic catheter might also be another option to add to the solution.

However, Jonah doesn't handle stents well.  He is very sensitive to how it feels and tends to hold his urine even more when he has a stent placed.  Both at 12 months old and then back in Fall 2020, he had several severe kidney infections because of holding urine because of the stent.  

Jonah also had a very hard time weaning off the suprapubic catheter.  What should have been a 2-4 week placement back in September 2020 ended up being 9 months!

So the doctor would really like to avoid a stent or catheter.

For now, he would like to have us double void Jonah every 2 hours.  This means have him go, and then a few minutes later have him go again.  We had been doing double voiding morning, noon, and bedtime.  Now we have to do it every bathroom time.  

This sounds a lot easier than it actually is.  Jonah gets very defiant when you ask him to go again.  We are opening ourselves up to many power struggles for the next two months.  But if a "simple" bathroom technique can prevent surgery, we will do the best we can!

Another ultrasound on 8-8-22.  If things are improved, then we are probably looking at long-term double voiding and long-term pull ups since there is on way we can ask him to try and keep underwear dry- that would be way too confusing for him when we are also needing him to pee!

If things are the same or worse, then it looks like some kind of surgical intervention is in the picture.

I would think at some point if things don't improve, another renal function test will have to be done because the doctor said he is concerned that this severe dialation on the left kidney will start to decrease it's function.

So as is typical for Jonah, he's not typical.  He doesn't follow the textbook description or the normal trajectory of anything.  Hence the reason for the puzzle joke in the title.  However, nothing about today seemed very funny except the fact that Jonah is an awfully cute and sweet little fellow.  And the good news he is feeling good, no kidney infections despite this severe dialation.  Probably the daily antibiotic (yes, he's been on a daily antibiotic since November 2021) is helping him with that.

GROWTH UPDATE

 

This spring brought 6 month check ups for both boys with endocrinology (thyroid).  

Jonah's dose of levothyroxine stayed the same, but Ben's dose had to be increased.

Here are some interesting growth stats for the boys.

Jonah (DOB 9-14-10)

 October 2021

Weight: 62 lbs

Height: 4'3.38"

April 2022

Weight: 71 lb 6.9 oz

Height: 4'4.64"

Ben (DOB 6-21-10)

November 2021

Weight: 64 lbs

Height: 4'5.15"

May 2022

Weight: 70 lbs 1.7 oz

Height: 4'6.51"

So both boys gained 6-10 lbs in the past 6 months.

  

This is the first time that Jonah has weighed more than Ben!

Doctor was not concerned about weight gain at this point.  However, weight is something we will have to closely monitor because individuals with Down syndrome can have problems with being overweight which puts them at higher risk for other conditions like diabetes etc.

If you look at the boys the percentiles though, they are still pretty "little" compared to their typically developing peers.  And compared to other DS kiddos, Jonah is close to average weight and height.  Ben is actually taller and skinnier compared to other kids with DS.  

Jonah

Weight: 17% typical, 29% Down syndrome

Height: 3.5% typical, 41% Down syndrome

Ben

Weight: 10% typical, 20% Down syndrome

Height: 8% typical, 80% Down syndrome

Interesting...