Saturday, October 31, 2015

Happy Halloween!

Happy Halloween From Flash!

Flash likes to accessorize!  

Friday, October 30, 2015

“…….he will just be Riley.”

Just for the record, I’m not necessarily known for my literary abilities.  However, it was suggested that I share some of my thoughts about Down Syndrome and what it’s been like having the pleasure of spending almost 9 years with Hurricane Riley.  With the month almost gone, I guess I’m running out time so here we go.
Finding out you are having a child with Down Syndrome sends you down a lot of different emotional rabbit holes.   The internet and it’s wealth of information is as useful as it is detrimental to your search in what’s to come for him but for the family as well.  One moment you’re telling yourself everything will be okay.  The next you’re terrified because you’ve just read about the seemingly endless possibilities of health problems he could have.  The “what-ifs” consume you and will drive you to the brink of insanity.
After the amniocentesis results confirmed everything for us we sat down with some genetic counselors.  Honestly I can’t tell you much about what was said.  I was still trying to process everything and not let my anxiety get the best of me.  It was a lot of Charlie Brown’s teacher speaking to me. 
I do remember one thing however and it’s stuck with me all these years. She told us, “You’ll see past Down Syndrome and he will just be Riley.”  There was something comforting about that and it’s what I want people to do for Riley.  Look past the Down Syndrome and see him for what he is.  He’s Riley.
What it really boils down to is that when you have ANY child your lives change forever.  With Rex’s birth we became a family of 3 and our lifestyle changed.  It’s inevitable and it’s not a bad thing.  It’s just what happens and you roll with the changes.  The same thing with Riley.  While it was a VERY different experience all together you learn to roll with it and do whatever you have to do for him.
My wish for my kids is that they are healthy and happy.  While it’s true we seem to be constantly taking Riley in for another round of antibiotics bi-weekly, we’re pretty blessed with his health. We have met some amazing kiddos who have had major surgeries and it breaks your heart to hear the stories.  As far as happy….if you’ve been reading Mary’s blog you know Riley has that figured out.
I guess if I have anything to offer to anyone it’s that you can’t plan everything in life.  Your kids might take you down a different path than where you thought you were headed but that’s what keeps life interesting.  I’ve met some amazing people and made lifelong friends on this journey that I may not have met otherwise.  Be thankful for the gifts you’re given and let your kids teach you how to be a better person.

Thursday, October 29, 2015

Let's Talk about Sleep!

There is a 50-100% incidence of obstructive sleep apnea in individuals with Down Syndrome, with almost 60% of children with Down syndrome having abnormal sleep studies by age 3.5 - 4 years. The overall incidence of obstructive sleep apnea increases as children grow older.  You can find the full article form the NDSS by following this link.  

I think we would all agree that our day is better if we get a good nights sleep.   Riley has always been a kiddo that needs a ton of sleep.   Through first grade he would often come home from school take a nap and then get up and plan and have dinner and then go back to bed.  We would try really hard to get him to bed by 7:30 to have a prayer of him getting enough sleep to have a good day.  Not always the easiest thing to accomplish with anything on your after school calendar. 

We have always known that Riley wasn't a restful sleeper.  If you slept with him it felt a bit like he was running a marathon or you were likely to have bruises by morning from being kicked.  He always did this crazy sit up like he's woken up but was really still sleeping.  Then he'd fold himself in half and sleep with his head resting between his feet.  It hurts to just think about but he is totally comfortable in that position. 
Sleeping cross legged

Last winter when Riley was having so many trouble at school,  just not himself and was sad his pediatrician decided it was time to have a sleep study completed.  Riley has always had strange sleep but not the typical gasping that would make you sleep of sleep apnea.  The referral went in and then we were informed it would be 6 months before the neurologist could see him.  So we waited and waited for that appointment.  It lasted all of about 10 strange minutes and we had orders for a sleep study to be completed. 
This was Riley waiting for the sleep Dr appointment.  "No mom I"m not tired.  I'm thinking!"

So we waited almost a month to schedule Riley's first sleep study.  He did surprisingly well tolerating all of the wires and stickers and even managed to sleep.  After waiting a few more weeks for the Dr to read the findings it was confirmed that Riley does have mild obstructive sleep apnea.  So that earned him another sleep study to set the titration of the cpap machine.  Since Riley has already had this tonsils and adenoids removed this is really the only other treatment.  Lucky Riley!  So we waited about another month for the 2nd study and another trip to the Dr's hotel and our super hero mask was waiting for us. 

Study 1
Preparing for study2

Study 2 with cpap
 The 2nd study was a bit more rough.  There was crying and screaming.  He hated the noise and the wind.  "The wind go outside not in my face!"  It wasn't pretty but we powered through.  Poor kid was not pleased but he did relax and sleep long enough to the data to be collected. 
At home with cpap

So in mid august we brought home  the cpap .  He started out pretty well and his hours increased each night and I thought we might get lucky.  Then I put him back in his own bed with it.  Well that was a joke.  That is wen the excuses got deep.  "My head is too fat it won't fit"  "I allergic"  "mom there was a shadow and it scared me so I had to take my mask off"  and those are just the best of the lot.  By this point going to bed which was always a pretty simple process because a huge anxiety provoking ordeal.  Often there were tears but always excuses.  We tried melatonin.  This was OK but not great.  It was finally time for the follow up with the neurologist that started this whole thing.  I may have prepped Riley a bit for him to share his stories with the Dr when he asked about his mask.  I told him to tell the truth about how much he liked the mask.  So when the Dr asks him about it he says boldly "I LOVE MY MASK!"   I filled the Dr in the rest of the story and all of the fun bed time is.  He had me double the melatonin in hopes of getting him to sleep more restfully and leave the mask on longer.  EPIC Fail!  It got worse.  After calling the Dr back we were given a RX for clodine.  This is supposed to help him sleep.  We've been taking it for about 2 weeks.  I don't really think it has done a thing other than make me stress about giving my kid drugs.  The cpap machine tracks how many hours the mask it worn each night and also how many "events" occur.  I let Riley sleep with me again last week end and his slept 10 hours with the mask but the events went up.  Then it was 8 hours followed by another 10 hour night.  The events stayed higher though.  Then he was right back down to 2 hours and a horrible nights sleep.  He still has occasions where he sits up and folds himself in half.  Well fold your self inhalf with a cpap mask on it it either moves and makes the mask leak or blocks the vent.  Neither is good.  I think it leaks and then he wakes up and its all over at that point. 

I called the Dr on Monday with this theory and to see if he had any great solutions to this problem.  The nurse called back today and let me know the Dr thinks I need to let him sleep with me longer so Riley can adjust to wearing the mask.    I'm not sure how many years it takes to become a neurologist.  I'm guessing a lot.  He has to be a very intelligent man.  He has to be.  Apparently he skipped all courses related to working with children and more specifically working with children's parents.  We are almost a full year from when this process started with his pediatrician and are still a work in process.  I can see enough of a benefit with his over all moods and behaviors that I feel like its a fight we should take up but at the same time this is one of the most frustrating processes I've ever experienced. 
When I see him in great moods like this excited to go to school and we can stay up past 7:30 and not destroy his day it makes me think it is worth it.  At 3 in the morning when I'm putting the mask back on him it doesn't feel so fun. 

Wednesday, October 28, 2015

32,42,43.....EEEW Haw

Some nights you have to do your homework in your bathrobe.  Cause that's just how we roll at the Kibbe house.   Homework tonight we are working on counting by 10s.  It went something like this  32,42,43, eeew haw! 

I was trying to come up with something really profound to share about Down syndrome and memory. I'm not sure it is profound but this article is interesting.  You can read it if you'd like.  This is a topic that I'd love to learn more about.  It has such a huge impact on Riley's life and how he not only functions in school but really it impacts how he learns everything for the rest of his life. 

Riley's memory is a interesting thing.  He remembers really random things and really random times.   He is amazing with names.  He may ask you 45 times but once he has it he will always know your name.  Then there are the short term issue where you can work on a math problem with him, he solves it and 100% knows the answer and then between solving it and writing the correct number on the line he will totally forget the answer.  It is a FRUSTRATING thing to help him with when you know he knows but he really doesn't and then you have to start the whole process over.

And now you know while all good homework sessions at our house start with a glass of something. 

Tuesday, October 27, 2015

Flash Master

Some days Riley can be a lot.  It is a bit like putting loud grinding music, on repeat, very loudly!  It can be hard to focus and pick out the important parts.  Often Riley's most important messages are communicated with out words. 

Today is a perfect example of this.   He told me loud and clear that it is our friends that matter.  We need to make time for them and do things we love and have fun with them.  Share ourselves and always be authentic.   

 The best part of Riley is that he is 100% authentic.  He doesn't know how to be anything else.  At times I wish he a tiny inside voice that kept a few things from being shared but he doesn't.  You never doubt for a moment what Riley is feeling at any given moment.  He might love you but he doesn't hesitate to share with you exactly what he thinks.  There is no sugar coating anything.   EVER! 

Today was Bring a Friend and Wear Your Costume to Dance class day.    Seriously doesn't get much better than that combination for Riley.  Costumes just simply make everything better in his world.  He can jump into character at a moments notice and is completely in heaven pretending to fly and be a super hero.  He has very elaborate story lines to go along with his characters.  If he has a friend to dress up with then that is even better.  So getting to take Kaitlin to dance this afternoon and having her in her own costume was fabulous.  He looked forward to it all day.   When we arrived at dance he had to show her all over and a lot of dance moves.  I didn't get to watch class but I can imagine he was quite the host to his friend. 

He was pretty sure that Kaitlin needed to call him Flash Master  and bow to him.  Being the awesome sweet friend that she is Kaitlin just giggled at him.  She puts up with a lot but she wasn't going to bow down to him.  I love this girl!   

You may call me Flash Master.... 

Bonus... I get to go to Brother's check up dressed as Flash

Monday, October 26, 2015

Pumpkin Head!

 I am not the biggest fan of Halloween.  I don't have any philosophical reason for not liking it.  For the most part it boils down to the fact that I'm not very fun.  I hate to dress up and don't like squidgy pumpkin guts. You might think the kid with Down syndrome should have the biggest sensory issues in our house.  I don't think he can compete with Rex and I.  We are a quirky crew.    Sadly I've shared my issues with my kids, but we do go through the motions each year.  This year we didn't even wait until the night before to carve the pumpkins.  

This is apparently his scarecrow face

His Pumpkin Face

Rex has never been a fan of trick er treating which has always made me giggle.  He really just sees no good reason to knock on a perfect strangers door and talk to them.  Candy isn't even a big enough motivator to make eye contact and speak to that many adults.  Riley is only mildly better.  He LOVES LOVES LOVES the picking out of the costume and wearing it as much as possible.  He's in for about a block of houses and then he's done.  So really we are in it to hang out with our friends and bum all the peanut based candy from the peanut allergy house.  Seriously make friends with a peanut free house...  pay out in large amounts of peanut butter cups is fun. 

Twin smiles! 

Sunday, October 25, 2015

Sunday Funday

Typically when you are a Raiders fan and people 
ask you about the game this is the response you get.

There hasn't been as much hanging of the heads this season for the Raider fans in the house. 

 The rest of these oldies are from Riley's first fall just before he turned one.