AND NOW WE ARE NINE!

We celebrated Jonah's 9th birthday yesterday.  

So much fun!  

Now both boys are 9 years old.  

Ben is 3 months older than Jonah. 

The celebration actually started on Friday when Jonah brought his birthday treat to school.  His treated was buttered toast- again.  He brought this treat last year also.  I tried to talk him into ice cream, but he insisted on toast.

Then yesterday we had an eagle themed party.  Over the summer, Jonah has come to have a love/obsession with eagles.  So we ordered him an eagle birthday cake, and his presents were an eagle plate, eagle picture book, eagle tshirt, and an eagle lawn ornament.  He was thrilled with all of it.  Then to make it even better, he and Ben got Batman costumes!  Both of the boys were very happy little boys!  

I am so happy and proud to be Jonah's mom.  We have so much to be grateful for that the Lord brought this little boy into our life 9 years ago.  We owe so much to his birth mom for choosing us as his forever family.  Jonah is truly a blessing to have in our family!  And a whole lot of fun too!  

NEVER FORGET

Devotion from Guideposts.com:

Pray for each other so that you may be healed.... James 5:16 (NIV)

A haunted day, September 11, here in the States that are still United in the wild idea that interindependence is possible and glorious. A shivering day. It always will be.

I pray it never becomes a mere anniversary, an event only to remember murder and terror and fire and fear—or even worse, a day only to celebrate vengeance. No, I pray it becomes a day to remember courage and grace and love. I pray that will someday be the story of September 11.

To remember right is to pray right, says my dad, and he knows about murderous souls; he fought against Hitler.

He says to remember the roaring courage of the people who rushed to help, and the people who helped others out of the fire and ash, and the people who used their last minutes on earth to call their families and say “I love you. I love you. I will love you forever,” is to pray for them and us and even for the poor silly murderers, themselves just lanky, frightened boys, in the end, bloody boys terrified of a free world.

He says to remember the firemen who ran up, knowing they would never come down, the passengers storming the cockpit, the sergeant who ran out of the Pentagon to catch women leaping from high windows is the way to erase the name of the chief murderer.

He says that if we remember right, if we pray with our hearts in our mouths, maybe someday no one will remember the architect of ruin, but everyone will remember a day when the courage and mercy and glory of human beings rose to such a tide that no one will ever forget. That could happen, says my dad, and who will gainsay my dad? Not I.

Dear Lord, for the murdered, our prayers. For the murderers, our prayers. For us, frightened and muddled, prayers. For the courage to remember right, to witness and sing grace under duress, to someday find the country of forgiveness, prayers.

This was our world when 9-11 happened in 2001.  Abigail had just turned 3 in May, and Stephen was heading towards his 2nd birthday in November.  This may be the last photo we took before 9-11.  

The world these 2 grew up in greatly changed as a result of that day.  They were so young, they don't remember how things were before.  That is why Andrew and I gave all 3 of our older children (Lydia was born in 2003) a printout of this 9-11 timeline so that they would never forget what happened that day, and what it meant to our country and our world.  

Click HERE for 9-11 Timeline, Events of That Day

WELL THAT DIDN'T GO AS I THOUGHT

Jonah's pulmonology appointment today:

Good: Doctor was happy that Jonah had no breathing issues after we stopped using Flovent for July/August.  He said to continue being off Flovent going into the fall and winter.  If Jonah can stay clear of breathing issues, then when he sees him again in May, perhaps we can be done with pulmonology.  Jonah also had a breathing function test today which the doctor was pleased with the results.

Bad: Seems like pulmonologist thinks Jonah might need his tonsils out.

Since pulmonology and ENT are always asking about Jonah's snoring at night, I decided to video tape Jonah last night so the doctor today could hear his snoring.  Jonah snores most nights, some nights very loudly, some nights not so much.  Jonah is a restless sleeper.  It is not unusual to hear him knocking at his door, calling out our names, or moving around in his room.  Most the time, we wait it out and he goes back to sleep on his own.  

What causes Jonah to be so restless during the night?  There could be many reasons: Jonah himself is a pretty quirky guy so it doesn't surprise me that he is a quirky sleeper.  However, given the fact Jonah has been diagnosed with mild obstructive sleep apnea, the "experts" would say that probably he is waking himself up because of his snoring/breathing while sleeping.  

After our last sleep study in November 2017, we met with the ENT.  We were told their opinion was 50/50 on whether Jonah should have his tonsils removed.  It was up to us since he only had mild obstructive sleep apnea.  There was no urgent medical need for removal in their opinion.  

They wanted us to do a sleep diary for 30 days and then re-evaluate with them.  After 30 days, Jonah's tonsils were not as swollen as they happen to be at the ENT appointment.  Andrew and I decided we didn't really think that it was necessary to put Jonah through surgery and have his tonsils removed since the doctors were telling us they could go either way with that decision.  And honestly, at that point managing Jonah's Grave's disease seem to take over more of our attention so we never did reevaluate with ENT.  

Well, back to today's pulmonology appointment, I let the doctor listen to Jonah's snoring video from last night, and he was a bit shocked that Jonah's snoring is that bad on a regular basis.  He feels ENT may want to consider removing tonsils because the way the snoring sounds to him, Jonah may have more than just a mild case of sleep apnea.  

Can I just vent a bit about sleep studies?   

I have often tried to explain Jonah's snoring to various doctors.  That is why doctors have ordered sleep studies for Jonah.  But Jonah's 1st sleep study in 2014 came back normal, and his 2nd one in 2017 came back as mild.  

Here is the problem though: it is very hard to get a realistic picture of a child's sleep.  I understand the need to have all the wires etc, but it is very hard to have a normal night during the study.

Both times Jonah had a sleep study, he actually slept less restless than he does at home (go figure, right?)  In fact at his most recent study in 2017, I felt like he hardly snored.  

So yes, there is a chance that his snoring has been bad for years, but unfortunately the doctors aren't hanging around with us at night here at home to monitor his "real" sleeping/snoring.  

Anyway, I don't really want to think about Jonah having another surgery.  

I was a little scared that first night after his thyroid surgery when he had breathing issues.  The pulmonologist today thinks that those issues were the result of effects of the anesthesia along with Jonah having obstructive sleep apnea.  

Removal of tonsils, he feels, would help make any future surgeries safer for Jonah.  But surely that isn't the only reason to have the tonsils removed, right?  I mean who takes precautions for future surgeries that may never happen?  

To even considered having the tonsils removed, I would have to be convinced that his sleep apnea is a health risk to him on a day to day basis.  Given the fact this little guy has been snoring for most of his almost 9 years, do we all of a sudden do surgery now?  

Of course, I don't want to make the mistake of not taking this serious enough either.  Sleep apnea can be a dangerous thing if left untreated.  

Oh, what to do?

I don't know the right answers.  I will make an appointment with ENT and see if this time, they are more definitive about if they think Jonah needs tonsils removed.  I am hoping we can avoid another "thing" for Jonah.  I feel like this guy has been poked and prodded enough in his lifetime, but I also know that tonsilectomy is a fairly common and "easy" procedure so I know I shouldn't complain.  There are much more serious health issues that many little kiddos face.  Just venting...

FYI: here is a photo of Jonah at his 2017 sleep study showing all the wires etc.

Here is the snoring video:  

Click HERE for more info on Down syndrome and sleep apnea

Click HERE for more info

WELL THAT WAS A FIRST!

Never had one of our kids miss the first day of school before- Jonah is our first.  

Jonah was still running a fever yesterday so he did not go to school on Day One.  Instead he went to the doctor.  The good news his ears look great, and his strep screen came back negative.  He does have swollen glands/tonsils, but doctor thinks its just viral and will just need to run its course.

By early evening yesterday, Jonah's fever ended.  He slept great last night which meant I slept great too!  So he is off to school today for the morning.  

He happens to have his 6 month pulmonary check today down at Children's so only a half day for him.  We are crossing our fingers that Jonah will get dismissed from pulmonary today after 9 years of being a frequent flyer.  We have been off inhaler for July/August and no breathing issues.  We'll see...

Actually the following photo is a 2nd day of school.  Following my tradition of not being organized enough on Day One, this photo was taken this morning before Lydia headed out the door for Day Two.  

Lydia is a junior this year, and the boys are in 3rd grade.  And no, the boys are not wearing pajamas to school- Lydia's school starts 1 hour earlier than the boys.  I still have time to get them dressed!

I am happy to report that teachers said Ben had a great first day yesterday.  Yeah Ben!

HOMERUN, WALK, AND A STRIKEOUT

Today we thought we would give it a try.  

Every time we drive to Children's Hospital, we go past Miller Park.  The boys, especially Jonah since he is more often the patient, always get so excited to see the "baseball place".  So when Andrew found out today was $6 tickets and $1 hot dogs at the park, we decided to give it a try.  

The cheap tickets and food were our home run!  Good day to try at the game without spending too much money because we weren't sure how many innings we would last with the boys.  Both of them get rather scared of large crowds and loud noisy places.  

Our walk was from the parking lot to the stadium and then around the stadium to find our seats.  What a beautiful day for a baseball game.  70 degrees, nice breeze, partly sunny.  Very pleasant!  Great final fling of summer. 

Our strikeout was unfortunately right before we were going to leave for the game, Jonah started running a 101 fever.  He was pretty miserable so we knew he wasn't baseball material.  He was napping when it was time to go so we decided to still go with Ben.  We left Jonah with Lydia, but we sure felt guilty that Jonah was missing the game.  

Jonah actually perked up for a bit after his nap (and Advil) and played nicely for Lydia while we were gone.  But then, on our way home, she called that his fever was up to 101 again.  We are thinking his ear infection from 2 weeks ago may be back again?  We'll see how tonight goes.  

The other unfortunate thing is the first day of school is tomorrow.  I'm not sure the little guy will make it to school.  I have never had a child miss the first day.  He'll be so disappointed about that too.  Poor fellow.  

So we gave a baseball game a try although it didn't work out quite like we hoped.  I guess why that's flexibility is the game we most often suit up for in our household.  

Ben was pretty anxious most the time in the stadium although eating a hot dog helped!  What really scared him the most was walking up and down the steps by our seats and the escalator.  However, we are proud of him for giving it a try and actually sitting pretty quietly for 6 innings.  

Jonah sleeping when we left for the game. 

Ben's pre-game nap in the van heading there

Getting to our seats.  

At first, Ben kept asking to go home.

   

Ben starting to settle in and handle the noise etc.

Finally some smiles from Ben.  

This was post-hot dog:)

Made it to the 6th inning!  

DREAM BIG...DREAM BIGGER!

As the boys get older, part of our considerations during our IEP meetings is to think about what skills do the boys need to succeed as adults.  This means thinking about what type of job might the boys have when they finish high school.  Of course, recently a local college has started a college program for individuals with Down syndrome so we can even consider college as an option for our boys!

The reason we are trying to think in these terms is because if we are hoping our boys can live independently some day and have a job working at a supermarket or a Culvers, then we need to start focusing on the skills they will need for that dream to happen.  We will never undersell them or "under offer" opportunities for them.  But we do need to be practical.  For example, having calculus as our goal seems a little silly when money handling/management is going to be way more useful to them in the future.

However, someone shared this following video with me which made me realize that maybe I'm not dreaming big ENOUGH.  Maybe instead of Culver's, I should think about law firms!  This video is very inspirational and makes you think about how we shouldn't limit anybody or put them in a box of what we think they can do.  Very insightful!

On a side note, can I just give a huge shout out to businesses that hire individuals 

with Down syndrome?

 Thank you for thinking bigger!

Now enjoy this video.

And some photos from last horse 

riding lesson of the summer:

Click HERE for more information about the college program I mentioned

SUMMER SUMMARY

In getting ready for the first day of school next week, I sent this summary to the boys' special education teacher:

We have had an amazing summer!  I really had a lot of fun with my two goofballs  I was a little worried the days would seem a bit overwhelming, but the Lord really blessed me in being able to see past some of their behavior stuff, and see them for the cute, funny, and bright little boys they are.  

Just a quick summary about where we are at:

Ben Positive:  Ben and I had some great bonding time in the mornings while Jonah was at our church's daycare in the mornings.  We also had some great one-on-one school time.  Ben impressed me with letter/number recognition, letter sounds, counting, simple addition, and reading! 

Ben Negative: Ben struggled with color recognition and handwriting (staying in the lines).  Socially, Ben didn't have much time playing with other kids besides Jonah so I am a bit worried about his transition back to recess time.

Jonah Positive: Jonah really enjoyed and connected with kids/staff at our church's daycare.  During our school time at home, Jonah also impressed me with letter/number recognition, letter sounds, counting, simple addition, and reading!  I also think Jonah's speech has improved a bit this summer.  Jonah also has done a great job staying dry for most of the day, although #2 bathroom is still a struggle with having it happen in the bathroom.  

Jonah Negative: While Jonah is staying dry most of the day, he refuses to use underwear for me.  So we have been in pullups for the summer and keeping those dry.  When in underwear, we have wetting (not a lot...) almost constantly.  The other negative I saw in Jonah, and may be a result of being in daycare, is Jonah is a little too hands one with kiddos that are younger than him.  I don't think it's him being mean, but it comes off a little rough.  

For both boys, I'm working through the book Teaching Your Child to Read in 20 Lessons.  I had better luck figuring out what I was suppose to do than the Edmark program so that is why I chose this book.  We are currently on Lesson 4-8.  Each lesson is about 20 pages and the boys can do about 1-2 pages at a time.  

Click HERE for Teaching Your Child to Read in 20 Lesssons

We also worked through a kindergarten Math workbook.  

Teacher Meet and Greet this afternoon!