PROBABLY JUST ONE PIECE OF THE PUZZLE BUT...

 

In July 2021, after having Lyme's Disease, Jonah's TSH level came back at 44!  The normal range should be .5 to 4.50!  

His endocrinologist suspects having Lyme's must have thrown his TSH off, so she upped his levothyroxine dosage from 66 mcg to 100 mcg.  

Starting in Aug into Sept, we started to notice more aggressive and angry behavior from Jonah: defiance, rude, hitting, throwing, kicking. This is not normal for Jonah.  His appetite and sleep stayed normal.

Starting the school year, this odd behavior continued and was even noticed by teachers.

So on 9-15-21, we contacted his endocrinologist to inquire if the higher dose was causing Jonah's irritability.  This is listed as a side effect of too high of dose of levothyroxine.  The doctor order TSH labs.  His TSH was <.10.  Normal range should be .5 to 4.50.  This showed the doctor that his medicine dosage was too high and so she reduced him to 88 mcg.

For his 10-11-21 6mth checkup, his labs were .53 which means he is in normal range.  

But the even better news is Jonah's behavior has evened out since going on the 88 mcg instead of 100 mcg.

However, I am not going to assume the medicine dosage was the only thing affected Jonah's behavior.

  Things were changing in our household starting in mid-August.  Stephen was preparing to go back to college, and Lydia was preparing to start college.  There is a chance that Jonah picked up on these changes and felt some sadness/frustration/stress.  

The boys also started with a new team at school due to being in middle school.  But probably to make things a little confusing for them, they continue to meet up with their old team from elementary school.  So this transition could also have been the cause of sadness/frustration/stress for Jonah.

The other factor we had to consider was with Jonah turning 11, hormone levels may be starting to change which can cause changes in behavior.  

When your child is non-verbal and can't express his thoughts and emotions, it's like a guessing game or process of elimination to figure out why he's having behavior issues.

I'm very grateful Jonah's endocrinologist listened to me and helped us out in this one possible cause.

But I'm suspecting Jonah's behavior dive was the result of all these different issues coming together for the "perfect storm". 

I'm very happy for Jonah (and us) that his behavior evened out again.  He is back to his silly mischievious self which is a whole lot more fun to be around!

NEVER SAW THE CONNECTION BEFORE...

Sometimes it takes me a bit to see things even when they are so obvious right before my eyes.

October is Down Syndrome Awareness Month.

October is also Breast Cancer Awareness Month.

There is great significance to me in October sharing these two causes.

How did I never see that before?

Adopting Jonah was a spiritual high for me.  I experienced the Lord working and moving in incredible ways in our lives, in Jonah's birth family's lives, and many other people lives who played critical roles in Jonah's adoption story.  It truly felt like we were part of a miracle when Jonah was placed in my arms at 3 weeks old in October 2010.

That spiritual high happiness as well as joy of adding a baby to our family continued for the next three months, into January 2011.

But then something that felt very sinister and threatening entered my life: breast cancer.

I didn't see it coming- I went in for my 40 year old 1st screening mammo.  I had no symptoms or suspicions.  Just trying to be a good person and do my suggested health screening.

I lost my footing as a mom as a result of that diagnosis.  I felt overwhelmed to be a parent to 4 children and with one of them having special needs.  I felt like I had misrepresented how qualified I was to be Jonah's mom because now I seemed very unhealthy.  

As much as I loved the new baby in our family, emotionally I wanted to pull away from Jonah.  I felt like instead of me, he could have had a better mother, a better family, a better future.  

It took a lot of prayer and mental gymnastics to get my foundation back.  

Oddly enough, the Lord chose the summer of 2011 (right after I finished my chemo) to have Jonah go on a sleep strike.  He stopped taking naps and chose to start his day at 4 am.  Jonah and I were forced to spend many hours together.  Actually: me, Jonah, and my anxiety.  

It was quite a way the Lord taught me to trust Him and not doctors, or experts, or even anxiety meds.  

My entire family helped me get through my cancer experience.  Even that little 4 month old baby who had no idea what was happening in the world around him.  I fought hard to get through the breast cancer journey for my family, and especially for this little baby who had Down syndrome.  

So how fitting that October combines on of my highest experiences with one of my lowest experiences.

Very significant and I can't believe I never saw that connection before.

Am I thankful for the breast cancer?  Oddly enough, in some ways yes.  

It was caught early which helped my prognosis.  It grew me spiritually in BIG ways.  It made me realize how loved and supported I am by my Lord, my friends and family.

Am I thankful for my now 2 boys with Down syndrome?  Of course, YES!  

It is so amazing to watch them grow and learn.  They are so fun to watch how they do life.  Being around them makes me appreciate what's most important in life.  They live authentically.  They don't play mind games with you and say one thing but mean the other.  They don't act nice to your face but then say means things about you behind your back.  If they are upset with me, they just say it right to my face.  That's refreshing!  But they also generously give hugs and say "I love you" at the most random and unexpected times.  Little things make them happy.

Parenting them is a big responsibility.  I worry about the "what ifs" of their future if I'm not there for them some day.  The Lord is constantly reminding me to trust in Him and to take one day at a time.  Because of the boys, I'm being taught some very important spiritual lessons everyday.  

I am so grateful the Lord allowed me to go on this journey with them.   

So in the end, I'm realizing October has much to celebrate for me!  

I don't often post photos of myself.  But this photo has always been very touching to me.  This was the first time I held Jonah after my breast cancer surgery.  It felt so good to have in him back in my arms again.  However, even though I'm smiling, inside there was a lot of fear stirring up.    

IT’S THAT TIME OF YEAR!

 

The boys gladly picked out their own pumpkins and 

then 6 more for the rest of the family including our dog.

MISCELLANEOUS MOMENTS

After over a year of not being on a horse because of Covid and Jonah being sick, the boys are back in the saddle!

Tucker camped with us this weekend and loved it!

A TALE OF THREE BIKES

 For Ben’s 11th birthday back in July, we got him a new 20 in bike.  This was because he needed one in order to participate in the “I Can Shine” Bike camp.  There’s a previous blog post about that fun week.

 Jonah has an old but very nice 20 in bike from when our girls were younger (don’t worry, it isn’t a Barbie bike.  It’s light blue…and lavender 😊).

Anyway when we brought Ben’s new bike to bike camp, the instructor said he would not recommend it because it had only foot brakes, no hand brakes.  He said it’s too complicated for kids with special needs to use their feet for peddling and braking.

So bike #1 got returned, and bike #2 purchased instead.  

On the second day of bike camp, the instructor looked at bike #2 and said that one wasn’t good either because the hand brake was only for the front.  This is dangerous because kids can topple over the top of the bike if they brake too hard. 

At this point, can you tell I’m not an expert about bikes?  We lucked out years ago when we bought the girl bike.  It has 2 hand brakes for front and back.  The bike instructor just disconnected the front brake for Jonah to use it. 

To continue our bike drama, bike #2 was returned.  We now went to a good bike store and found a used expensive 20in bike with a rear wheel front brake.  Finally, we found success!  Bike #3 is perfect the bike instructor said.

Through all the coming and going of these three birthday bikes, the funny thing is Ben never noticed and/or cared.  It didn’t phase him that we kept taking away his birthday present and replacing it with another.  And he will probably not be bothered that his birthday photos are him with a totally different bike then he ended up with!  Now that’s rolling with it…literally.

So the other part of this bike drama is after many weeks of working with the boys on trying to balance and steer a two-wheel bike, we have decided to put it aside for a bit.  It’s just too hard for our boys right now.

The “I Can Shine” Bike camp did say they have about an 80% success rate with kiddos mastering a 2 wheeler by the end of the week camp.  20% of participants need additional practice at home or at another week of camp.  

Since regular training wheels don’t fit very good or not at all on 20in bikes, Andrew researched and found a great company that makes heavy duty training wheels for all size bikes.  It’s a company that does this to help people with special needs enjoy biking!  

Here’s the link if interested:

Click HERE for Fat Wheels info

We are soooo excited for our dynamic duo.  They can now enjoy bike riding!  

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!  

A MUPPET BIRTHDAY!

Today Jonah turns 11!

Hard to believe.

Texted with his birth mom this morning.  She loves him so much.

Many memories for her and us.

Jonah is such a treasure and gift to all.

I feel so privileged I get to watch and help this special little boy grow up!

Decided to go back to his 1 year birthday for my trip down memory lane today.  So adorable!

And now for photos from today.  Jonah asked for a Muppet birthday so that is what we gave him!

He also brought buttered toast for his birthday treat at school.  This might be a yearly tradition...