Showing posts with label down syndrome. Show all posts
Showing posts with label down syndrome. Show all posts

Friday, December 28, 2012

Madi is 2 years old!

2 years ago today......my life was forever changed!  When I first heard the words, "Down syndrome", I thought it was the end of the world.  But, soon I would discover it was not something to be feared.  If Madi having Down syndrome is what makes her HER........then I wouldn't change it for the anything!

When I first started writing Madi's birthday post, I looked back to see what I had written last year on her birthday ....... and you know, I was going to write something very similar.  The feelings are all the same.  I am continually amazed by this little girl and every day she shows me that she is capable of such great things!!

She is smart, stubborn, determined, silly, crazy over her sister and most of all......the most loving little girl!  Seriously, this girl gives the best hugs!

Here is a look at the last year....


Miss Madi was sick pretty much the first 4 months of last year.






Doing the army crawl.


Valentine's Day!


St. Patrick's Day!


Officially crawling on all fours!


 
World Down syndrome Day!


Pajama and Pancakes Easter Party!



1st Airplane Ride!







Soooo big!


Doing her bear crawl!


Pudding sensory fun!




Step Up for Down syndrome Walk!



It is false that kids with Down syndrome are always happy!!





Unhappy Unicorn!



We discovered she LOVES suckers!



And lollipops too!!



Happy 2nd Birthday Miss Madi!!!!

Wednesday, September 26, 2012

T/A and Supraglottoplasty Surgery

Tomorrow is a big day for Madi.  She is having surgery to have her tonsils and adenoids removed and to have a supraglottoplasty.

Madi's cheese ball smile she likes to give these days!



Back in March when she had a triple scope done, the ENT thought it would be best to have the procedures done to help open up the airways.  We are hoping that her sleep apnea will improve.....maybe she will even get off the oxygen!!

We are hoping the constant congestion that she has will improve.  I think we have had only a handful of months since she was born where her nose wasn't running and she can actually breathe out of her nose.  If she can breathe out of nose, then maybe her mouth closure will improve and her tongue will be more retracted.

We are also hoping that she won't be as sick as she was last winter.




I'm not as nervous about the actual procedure as I am about the recovery.  I know that the doctors perform these procedures each and every day and that it is not too big of a deal.  The recovery is another story.

When Taylor had her tonsils removed, she ate popsicles and ice cream for a week and then she was back to normal.  Madi........not so much.  First, she can't have popsicles nor ice cream due to the aspiration.  So what is she supposed to have?!?!

They won't allow her to drink out of the straw cup during the recovery......well, that's the only thong she CAN drink out of.  She will take the bottle but I don't think they want you to do that either.  We are going to attempt a sippy cup with the valve taken out, but that might be a little interesting.

She doesn't like water.  Actually, let me rephrase that, she doesn't like water that has been thickened with Simply Thick.  Which I don't blame her......it's disgusting!  She doesn't like juice.......I have been trying for the last month to get her to drink it in preparation for the surgery.  Milk, milk, milk is her drink of choice!  I am hoping we can coax her to drink a shake of some sort but we shall see.

So, again.......I am a little nervous about the recovery.

In reality, though, what we are about to endure is nothing compared to what Madi's little friend Lily is going through.  She was just recently diagnosed with leukemia and started her first chemo treatment
today.  Madi and Lily are only 3 weeks apart in age.

Sweet Lily!  

Madi and Lily last year at Taylor's birthday party


Please send us prayers that Madi's surgery and recovery goes smooth.  And please send some extra prayers to Lily and her parents, as they are embarking on a journey that none of us want to go on.