Tuesday, October 7, 2014

3 Surgeries in one month!! What was I thinking??!!




I guess I didn't realize how much I may have bitten off by scheduling three surgeries in one month.  Lots of pre-op testing and appointments have been keeping me busy.  Then I wasn't really considering recovery time AND the fact that we have a little three day family get away planned in the middle of it all that we've had planned since the beginning of summer.

Yesterday Caleb went and had a thyroid sonogram evaluation done just to make sure that the mass we found on his neck has nothing to do with his thyroid.  He was the model patient and he sat completly still and watched the images intently like he was watching his favorite cartoon.  Today already his ENT at Children's called and said that his thyroid looks great and they will go forward expecting that this is a Thyroglossal Duct Cyst as originally thought.  He said that he won't know for a fact that it is that until they get in there and see.  Best case its just a little mass thats not thyroglossal duct related and they snip it and remove it.  If it is a Thyroglossal Duct Cyst they will have to travel up to the bottom part of the tongue to remove cyst which will be a little more involved but not much.

Today Tristin went in for her pre-op appointment.  She will be having her tonsils out next Monday.  All other four children already have their tonsils and adenoids out and not sure how Tristin got missed but her throat has been a mess for months and the tonsil stones are record size....yuck!!!  We enrolled her in a case study to take and extra step in pain management.  She will apply a topical medicine to her entire neck four times a day for a week to help with pain.  Anxious to see how it works for her.  I have heard time and time again that the older you are the harder it is to get your tonsils out.  With Tristin being 17 she's considered an adult and has been warned that there will be some extreme pain for several days.  I still have my tonsils so I am no good at giving advice on what to expect.

Caleb and Isaac are both having surgery on October 31st.  This was the surgery that was postponed from September 19th due to conflicting schedules with surgeons.  Caleb will have five procedure done.  He will have dental work with extractions, ear tubes placed, an airway assessment done due to his surgery on June 16th that had to be cancelled due to unstable airways, the mass removed from his neck and a hernia repair performed.  Isaac will have three procedures done, the dental work with extractions, he has two perforated ear drums that they are going to see if they need repaired or left alone and a scope to assess his airway as well since they usually have identical issues all the time.

Both boys have Subglottic Stenosis (narrow airways).  We have known this since they were infants that they both have this condition.  This is something that should not get worse but basically just stay the same as they grow.  It is my understanding that the stenosis will grow with them but always be smaller than normal size.  When Caleb could not be intubated in June they came out and said he has a 60% narrowing, more than was on record from the last surgery.  They are assuming he has some scar tissue forming or growing from previous intubations, this is why they are going to do an airway assessment.  Since they are both at risk for intubation they decided to get as many procedures done as possible with this next surgery date.

Asking for prayers that all surgeries go well.  This will be Tristins second surgery (her first surgery was when she was two) and the twins, umteenth...really lost count....surgery.

Down Syndrome Awareness Day #7 - Technology

For Down Syndrome Awareness Month I have decided to go through my old photos and show off photos of my beautiful boys.  We have been blessed time and time again with memories that we wouldn't have without these silly boys who happen to have an extra chromosome in them.


Over the past year they have both gotten very good on the iPad (which they use for communication) and on daddy's Kindle (which they use for games).  Both boys are very technology driven and I can't wait to see the progress they make in the upcoming year.







Monday, October 6, 2014

Down Syndrome Awareness Day #6 - Caleb

For Down Syndrome Awareness Month I have decided to share photos all month long of my beautiful boys.. Today I am sharing some photos I found of Caleb about a year ago.  He loves to dress up and show off himself in the mirror.  He can do this for an hour, being silly and dancing and laughing at himself.  He soon has everyone laughing right along with him :)

These photos were taken in sisters room.  Just keeping it real not cropping out messy stuff...LOL  If your like me your not looking at room your looking a cutie pies face.











Friday, October 3, 2014

Down Syndrome Awarness Day #3



Thank you Red Room Images for a WONDERFUL ball photo this year, I love it!!!!!

This is the second year the twins played on our local Challenger League.  They did better this year than last and expect that each year they will enjoy it more and more.  This year they wore their noise reduction head phones and it really changed their experience.  Usually they do not like to be in crowds let alone crowds that clap and hoot and holler, with these headphones on they tolerated the noise on the field and in the stands much...much better.

Having Down Syndrome might hold them back from doing things "on time like a typical child" but it doesn't hold them back from eventually getting there and enjoying it just as much as the other kids.  I am proud of Caleb and Isaac for hitting the ball off the tee all by themselves this year... YAY BOYS

Thursday, October 2, 2014

Down Syndrome Awareness Day #2

I think for Down Syndrome Awareness Month instead of blogging and typing in facts like I have done for the past eight years, I'm going to share what really matters..

My twins cuteness...


So look for a daily photo of these crazy kids who have changed us more than I can even begin to type with words.

Thursday, September 11, 2014

It's official, we have TWO TEENS!!!!


Tristin Rose, today you turn 17.  As your mom I am seeing a beautiful transformation happening from my little girl to my beautiful young lady.  You are seeking your independance way to fast for me, yet I know you must spread your wings and learn to fly.  I love seeing the artistic passion you display when you do a drawing or pastel.  I love seeing you step up and do adult tasks like calling to make your own doctors appointment, deciding where to order dinner and then making order, working at Hanzely's Nursery and Garden Center and interacting with customers.  Your beautiful inside and out.  I am saddened that this is your last year as my "child" and I know your looking forward to turning 18 to "get out of here", but you will ALWAYS be my baby girl, my little pookey bear.  I love you more than words can say......as I tear up again (boy you make me do this alot lately).  Praying God blesses you with a fantastic year.

Camille Sage, today you turn 13... THIRTEEN...what??!!! another teeneager in the household, how will I survive it?  You have changed both in appearance and in maturity this past year.  What a difference a year makes at this age.  Your compassionate heart continues to grow with you and your amazing gift of being a caregiver to your younger brothers amazes me.  I can still envision you being four years old and lifting up your 4# little brother Caleb freshly home from the NICU and saying "I will take care of him mama".  You have never let me down with that.  I see confidence building in you that wasn't there before, I see a comedian side of you coming out that cracks me up, I see you will always give me a twist and turn where I thought I knew the road ahead already, I see myself being proud of you down whatever road you take.  Love you Girl!!

Each year on this day I still mourn for the families who lost everything in the 9-11 attacks, but I also praise God for blessing our family TWICE on this particular date.  We will always have reason to celebrate but still honor this day as one that will never be forgotten.  





Psalm 127:3-5New King James Version (NKJV)

Behold, children are a heritage from the Lord,
The fruit of the womb is a reward.
Like arrows in the hand of a warrior,
So are the children of one’s youth.
Happy is the man who has his quiver full of them;
They shall not be ashamed,
But shall speak with their enemies in the gate.






Monday, September 8, 2014

We just want a place to fit in.... MattyBRaps new Video True Colors

I sat and watched this video on a friends Facebook wall.  I knew it was going to be good because I like MattyBRaps and I have followed his journey since I found out he has a beautiful sister with an extra special chromosome like my identical twins Caleb and Isaac have.

When I saw the song was a remix of Cyndi Laupers song True Colors I was even more excited to watch the video.  I was able to see Cyndi Lauper a few years before the twins arrived and she was a great performer and still one of my favorite "oldies but goodies".


Watch the video and then play it again and read my commentary:



The following lyrics really stood out to me....I played this song over and over again and I'll be honest I had tears flowing.  We have had the twins on the playground and the same scene happened, kids looked at them and got up and very obviously moved to a different part of the playground.  We have had children rudely tell the twins to shut up and quit making those loud noises.  We also have had one incident where a child pushed one of the twins because "he was retarded and shouldn't be allowed to play there".  So YES these words really hit the spot for me as their parent, YES these words are heartfelt towards other parents raising children with special needs, YES these are words worth sharing to help advocate for children like mine.  Down Syndrome, Autism, ADHD.... not words I ever dreamed would consume my life and world and yet create a passion to learn about these words non-stop.  I happily state that I give all Glory to God for allowing me the opportunity to open my heart and mind to learn about these words; Down Syndrome, Autism, ADHD..  I know there are so many other disabilities and diseases out there that I do not understand or know inside and out like I do my own children's disabilities but I sure know one thing for sure, the children ALL WANT LOVE, the children ALL WANT RESPECT, the children all deserve acceptance that it wasn't them that determined they would be different or sick.  Read these words and T H I N K, reflect on how you can personally open your heart and mind a little more and help out a family in some small way, even just opening up a casual conversation at the playground while your children play together.  Show them your "True Colors and How Beautiful Like a Rainbow" they are!!

We get uncomfortable when someone else is DIFFERENT

and it presses us to be open to change

mistreated not because of fashions that you've taken on or a terrible mistake but Hated on Because of your DNA.

It's never doin harm until it feels unfair and then we speak up but wonder why no one else cares

If we're honest inside.. and really wanted to right.. judging other for something they have no control of might be comical at times, but that might make me less of a man, the biggest thing I think is standing as a leader instead.

Imagine life without the boundaries we create with our pride and opportunities we lose because we judge from inside

The truth is that we are all equal and the answer is LOVE!!!



I'll admit I am still a work in progress myself, I still lose my tongue sometimes around other families with children with special needs not knowing what to say, but I can tell you a never fail conversation opener... you ready for it??!!... "Your child is so beautiful" "Tell me about him/her".

Thank you MattyBRaps for advocating for your little sister and for other children like her.  For opening up hearts and minds to at least being able to understand why they are different and how they are the same.

You don't have to go far to read terrible comments that people with Down Syndrome hear all the time.  Read the comments under the YouTube video posted above, its got to stop and it has to start somewhere.  Please share this blog if its touched you and leave a comment, I want to hear from people reading my blog!!!

GO!!!