How not to plan for Fall Break...

1 Month-ish Before Fall Break

Me:  "I want to do something fun for Fall Break."
Jed:  "Like What?"
Me:  "I don't know something."
Jed:  "I think we'll still be cutting beans."


3 days Before Fall Break

Jed:  "I think we're going to finish the beans, and it's supposed to rain."


2 days Before Fall Break

Jed:  "I have a GREAT idea.  We're going to take a train to Albuquerque, New Mexico!  It's super cheap!  I think it's 14 hours to get there."
Me:  awkward silence.... "That would be so fun, but do you think 14 hours is kind of a long time with a newborn and 2 little girls?  What if someone is sick on the train?" 
Jed:  "The trains are pretty empty."
Me:  "Ok, well we could do it in a couple days and get off to do fun things at different stops."
Jed:  "You don't have long enough at the stops to get off.  You have to stay on the train."
Me:  "Ummmmm, well let's keep thinking." 
Jed:  "Yeah, I'm not sure we're going to get done."


1 day Before Fall Break

Jed:  "How about driving to Denver, Colorado?"
Me:  "Really?!  Are you going to get done and be able to go?"
Jed:  "Yep, let's plan on that."
Me Yelling:  "GIRLS we are going to CO!  Let's go to the library!" 


FALL BREAK

9:30  Pulling out of the drive headed to Denver
10:30  Jed and I:  "Girls we're going to Colorado Springs!!" 
It did kind of confuse the girls since I had printed them maps and highlighted Denver! :)

Yes, my husband's a farmer

AND THAT'S HOW WE ROLL!

Planning is overrated, and I refuse to get my heartbroken if it doesn't rain. :)

 

In honor of Down Syndrome Awareness Month...

Disclaimer:  This is not to scare you off from talking to me in the grocery store, :)  I promise I'm not judging every word you say... it's just me sharing every detail.  Honestly, people have been truly, truly wonderful.

I'm not the last person who should be writing this, but I'm close.  Also because I LOVE pictures, I'm going to add random pictures with captions.  Yes, it will be confusing, but everything is better with pictures.

Things you may or may not know about Down Syndrome or really having a child with special needs based on our 2 month experiences.   You need to know that NONE of these were on my RADAR and I read A LOT.  Each case, child, and family are so very different.  Imagine that... kids with Down syndrome are unique. ;)  I think 1 day at a time is the best way to go.  Remember, this is based on my Very Limited experience.  I'm anxious to read this in a few years.  :)

Things you may not know....

**Evaluation is a nice, neat code word for we are going to assess your child and tell you everything that's wrong with him.  I had the bright idea to schedule his OT evaluation, PT, and ST evaluation on the same day.  Which means I got to go from room to room and have them tell me everything that was wrong with my child in each different area.  It was a VERY rough day.  They have not learned the sandwich method:  1 Positive 1 Negative followed by another Positive, or maybe you just hear the negatives.
PS:  We LOVE our therapists!  I'm in mourning because we had to change our PT for scheduling purposes, and I know I will love our new PT, but Amber rocked Cade and I's world.

Physical Therapy Pics

Cade has Physical Therapy and Occupational Therapy on Tuesday mornings.  He gets a 30 minute break to nurse and get a diaper change, but this actually happened last week. :)  He literally fell asleep on the therapy ball at the end of PT!!  He's kind of hilarious!

 

**Well Child Checks have been cause for major panic.  At our first well child check, we went from me smiling and taking pictures of a naked baby being weighed to being sent straight to ICU.  This lead to a 3 day stay in the hospital and leaving with oxygen 24/7 and finding out Cade has 2 small holes in his heart or ASD.

2nd well child check we found out our RSV shot has not yet been approved by insurance and isn't in.  These shots are $2500, and he gets 1 a month through March.  I know you can do the Math, but that is $15,000 in 6 months.
We also found out Cade might have Craniosynostosis, which means his cranial sutures are closing too early which constricts brain growth causing developmental delays, extra fluid in the brain, seizures, and blindness.  We are watching it closely.  The treatment is cutting his skull open and make room for brain growth. 
I can't wait for next month! :)

**Concern for getting sick is an entire new level.  Sure, we used hand sanitizer or as it's called at our house, HANITIZER, but Cade getting sick could be a really, really bad thing.  I should seriously buy stock in GermX or Bath and Body Works or maybe Clorox wipes. :)

My fear in writing this next part is offending people.  PLEASE do not be offended!! I'm so ignorant!!   Aren't we all on things we haven't experienced?  Please Please do not take offense as this is a way of expression for me.  A way of sharing things that are often too hard to share in person.

Comments that are rough that are not meant to be... (note: I am a sensitive person, always have been.  Some of these things don't bother Jed at all, but he's hyper unsensitive.  (it's a new term don't look it up.))

**Everybody knows or has a cousin's friend's Mom's Aunt who has Down syndrome and is just such a joy.  (smile thank you for sharing)  I know the reason this bothers me is that I want Cade to be known for Cade... his personality and not because he has Down syndrome.  It's hard for me to deal with him being put in a box.  I also understand they are trying to let me know that it will be okay, and that they also Love a person with Down syndrome, and that makes me happy.

**I feel judged.  Please notice I said I feel... not that anybody is judging me.  I worry because we haven't attended church as a family since Cade was born.  Just when we think we can start, his shots don't show up and pneumonia starts going around!!  However, if I run to the store, or take him in anywhere I feel like people are thinking well she's here.  Notice I said I feel... No one has actually said that to me!!

*Are you adjusting to your new normal? or Once you get through this... Yes, I truly feel I have "come to terms" with Cade having Down syndrome; however, each new day brings a new hoop.  These hoops will never go away just change.  I'm so concerned about giving Cade every advantage he can possibly have. 

I'm worried I didn't do enough Joint Compressions, exercises, mouth massages, torticollis stretches, eye contact practice, tracking practice to help him be as successful as possible. 

My heart brakes at how hard Cade has to work to do things we never gave a thought to for the girls.  I mean the kid has to do Core Exercises to strengthen his "pot belly" He's 2 months old.  Don't worry Cade you and me both buddy!  :)  We do our Core Exercises together.  Neither one of us are super impressed with the results at this point. :(

Working Very Hard in Physical Therapy.

 

Cade's favorite stretch... he fell asleep doing it!  I'm not stretching him now just trying to get a pic to show daddy.

 

Claire clearly isn't doing it right.

The fact is there will always be "hoops" with all children.  We all worry about how our children will be perceived in society, if they'll get along, if they'll let their light shine for the Lord, but it is different... trust me it's different.  My fears and worries are so much more heightened about how society will treat my baby boy.

**I can't believe we haven't been able to meet him.  (hold him)  I don't mind showing him to people.  Quite frankly I love showing him off, and am doing it more.  Just know, We're terrified!!  Again, I don't think people understand that if Cade does get something respiratory it can be Very, Very bad.  Cade's health is worth offending people. (sorry! love you. mean it.)


However....

Cade is a doll.  We are all absolutely smitten.  There is something very fun about having a baby at the ripe old age of 35.  You truly appreciate the joys of having, in my case, 1 more.  Not that you don't appreciate your babies when you're young, but something is just a little different.  I realize it also comes with him being my 3rd and final.  He is honestly the sweetest, cutest thing ever.  (I know I'm not supposed to say that.  It's annoying when moms brag.)
He fits our family perfectly...Proof...

Cade loves drilling wheat,

Bass Pro & 4 Wheelers

Wearing Overalls (thanks Brook)

 

 Caps

 

and Friday night Movie Nights!!

I'm thankful I was in a Class within a Class situation as a teacher in Missouri, and understand IEPs, evaluations, and goals.

I'm getting to be a Genius at Acronyms!!

I'm glad we knew before Cade was born for the simple fact of understanding some of the language, and not being shocked for the random things they check for or Cade has.

I cry almost every time he MAKES EYE CONTACT & SMILES it is AMAZING! (He started last Wednesday!)  We have worked so hard on eye contact, and then to feel he likes us too is a major bonus!!

We can't imagine our life without this Baby Boy and His Hoops! 

We are honored to be entrusted with all of our children, and that we all have been entrusted to Raise Cade.

 

As a mother comforts her child, so will I comfort you... Isaiah 66:13

 

Happy Down Syndrome Awareness Month

 

Outtakes... Cade's Birth Announcement

I have officially done Cade's birth announcement, and I love it!  Just pictures we had taken ourselves, but under the circumstances that was all we felt comfortable doing.  Not to mention our photographer left us high and dry for Europe!!  (the nerve)

Here both girls are just a little iffy about the entire situation... this theme continues throughout.  We did get a couple good ones, but I think their nervous faces are kind of funny.

It was at this point we ditched Cade's clearly too large jacket!  :)

Not bad...

Exactly the look I was going for!!  :)

We were all just too nervous to ever pull this look off.

My favorite... this is Cade's mad face.  People are NOT catering to his every whim.... Claire is like, "What do we do?"  and finally Livie, "The show must go on."

The final Product...
It's scanned so it's hard to see, but I thought they turned out.

Things you CAN do on limited contact...

Dove Hunt...
Miles away from anyone out in the wide open spaces.

 

Good thing Cade has Camo!!

 

 

I mean... he wasn't Super Impressed, but

 

Doves Beware!!

Why Yes, she is holding a dead dove!

(and Yes, Cade is still sleeping)

 

Go to the State Fair...
 Yes, I will admit this one was iffy, but Livie's school Always goes on a field trip to the state fair.  Daddy went as the sponsor... 1st time.  It went pretty good; however, I do believe he pulled out the "Life isn't Fair" speech.  (awkward)  Cade, Claire, and I met them after.  We just kept Cade pretty closed up.  I did get nervous when we saw people we knew who wanted to see him, but everyone is very respectful.

Make Moon Dust....

If you haven't done this, it is pretty cool, cheap, fun stuff!  Just Flour and Baby Oil!  Smells Terrific!!  The girls somehow turned it into a snowball fight! 

 

 

4 Cups of Flour

1/2 Cup Baby Oil





Lots and Lots of Walks...
Walks with Bikes...

 Walks with Babies...

 Walks with Butterfly Nets...

Fresh air does a body good.

I also have a major secret that only some of you know...
I am secretly an INTROVERT!!  No seriously, I could stay locked up in my house and do projects with my kids for YEARS!!  Total awkward hermit woman situation, but one thing I will NEVER be is a crazy cat lady... I am NOT a cat fan.  Sorry friends.

Psalm 116:6  The Lord protects the unwary; when I was brought low, he saved me.

Highs & Lows

Each day after school the girls and I do Highs and Lows of their days.

We've definitely had some Highs and Lows lately.

 

Bringing Cade home from the hospital happy, healthy and nursing was a MAJOR HIGH!  We are so glad to finally have him here.  He completes our family.

(He better because I'm DONE!)  :)

We think he was pretty happy about it as well!! 

Cade was and is a rockstar.  He is nursing, gaining weight and doing wonderfully.

However, at our well child 2 week appointment, our doctor heard a gallop in his heart beat.  In adults, this almost always means heart failure, but in kids it isn't necessarily, but can be.

This was where our LOW moment began.

 

We were sent immediately to the Pediatric ICU in Wichita.  It was a little crazy to say the least.  Claire and I had taken Cade to his appointment so Jed met us to grab Claire, and off Cade and I went.

We saw our Pediatric Cardiologist for another echocardiogram, which showed an atrial septal defect. This means he has two small holes between his top chambers of his heart.  These could close on their own, and many times do.  HIGH AGAIN!

However, while there they realized he wasn't getting enough oxygen.

After 3 days... and buying a cot,

 

 

 we were finally able to come home with Cade on oxygen 24/7 for 2 weeks.  LOW, but you get used to it, and it's only about 2 weeks.

We were scheduled to see a pediatric pulmonologist at Children's Mercy in Kansas City, and were hoping to get Cade off of oxygen at that point.

Unfortunately we found out that Cade's lungs due to Down syndrome do not have as many bronchioles.  Also, the bronchioles end in clusters of air sacks or alveoli.  Cade's don't have clusters they are just a blob (like my medical terminology. :))   Therefore he's not producing enough oxygen for his body.  We were hoping, because of what we had been told, that with the excellent growing he was doing his lungs would catch up.  That is not the case which leads me to our

MAJOR LOW. 

 

 Cade will be on oxygen on an as needed basis until 4-6 years old.  It should just get better and better as he grows, which is encouraging, but will probably need it his entire life when he gets colds or anything respiratory.

This is how we feel about that news.

 

Having a typical baby with a new immune system is scary... everyone is avidly washing their hands and avoids breathing on the baby. 

As you may have guessed, having a baby with a deficient immune system and on top of that respiratory issues is terrifying.  As luck would have it, this is the worst year ever for respiratory stuff!!  It's starting earlier than ever!!

AWESOME!!

(please insert major sarcasm here) 

Therefore we are on limited contact, and as much as I want Cade to stay this tiny, precious, snuggly baby, I'm ready for October when he can begin getting his RSV shots!

 

In conclusion, this is how Cade feels about doctors.

(and this is a good doc :))

 Honestly, we can't blame him.

 

 

Don't worry... next up making the best of isolation and limited contact...

God is faithful!

Preschool has begun!!

Claire has been SOOOOO ready for Preschool to start.  It's hard when there is all the hype with big sister, and then she has to wait until after Labor Day.

 

Well, the wait is over.  She was so excited to go, and then very nervous when we actually went.

Luckily, Daddy was able to come with us and sat in the car with Cade so I could take Claire in for her first day!

Telling Cade what's happening.

Feeling VERY big

This is what Cade thinks about it!  :)  He thinks this about a LOT of things we do.

As I said, she was very nervous, but then we took this picture.

and all was right with the world....

She once again had a FABULOUS day with a FABULOUS teacher!!