Tuesday, March 20, 2012

World Down syndrome Day 2012

Tomorrow is World Down syndrome Awareness Day!!!

Tomorrow is the day that we celebrate our beautiful blue-eyed babes with Down syndrome!!

Tomorrow, if I can touch just one person and help educate them about what it really means to have Down syndrome......my mission will be accomplished!

I want to start off with a great video that features people with Down syndrome from all over the world.

If you would have told me five years ago that I would have a child with Down syndrome and would become an advocate for her and all of her friends that are blessed with an extra chromosome......I would have thought you were crazy!

And yes, I said "blessed with an extra chromosome"....... I know that I have said this many times before.....but, there is something SERIOUSLY special about Madi!!  She lights up my world!!  I am her mama and, of course, I am going to love her to pieces.  But, other people pick up on this "specialness".
It just emanates from her!  When she smiles, she transforms your world!  I only wish that I could have that secret power over people!

There is a lot of controversy in the Down syndrome community lately.  With the couple that sued for the wrongful birth of their daughter with Down syndrome and the new prenatal blood test that is said to "eradicate Down syndrome" ........... those of us that are advocates and self-advocates have their work cut out for ourselves!

I am not a person that is able to write out my thoughts and have them expressed as eloquently as many of my fellow bloggers, so I would like to share a few blogs that I follow that have touched on some of these controversial topics.

First off, fellow blogger over at A Perfect Lily has done a series of blog posts that cover the prenatal blood tests.  To really get the whole message that she is making, you need to start with the first post, We Have A Voice.  When you read today's post, A Positive Outcome, you will recognize a familiar face......Madi!!!

Another blogger to check out is Everything and Nothing from Essex.  She pretty much tells it like it is to the couple that sued over their child.

My all time favorite blogger...........the wonderful Kelle Hampton over at Enjoying the Small Things.  She is the reason I was able to make it through those first few months after Madi was born.  When Madi was born, I was so scared.  Scared of the future.......scared of the unknown.  But, seeing her daughter, Nella, be just a "typical" little girl who happens to have Down syndrome.......it made it all okay.  It gave me hope for the future.  And it made me realize that we can be a "normal" family.


My plans for tomorrow are to go to Taylor and Madi's school at the Goddard and talk to the classes about Down syndrome.  I made up a fun poster with pictures of Madi doing regular things like her "typical" peers do.  I am reading the book, My Friend Isabelle to the classes and have put together a letter to all the parents in the school.  The letter shares all the great things that Madi is doing, just like her "typical" peers and debunks some of the myths about Down syndrome.  

Head over to My Stubborn Little Miss to check out other bloggers that are celebrating World Down syndrome Day!


Thursday, March 15, 2012

Madi is Creeping - Huge Milestone!!!

Madi is creeping!!!  Okay, those of you that are not immersed with Physical Therapy terms......that means she is crawling on her hands and knees.  She has been army crawling for 3 months or so but would not do it on her hands and knees.

We have been working and working and working on building up her arm strength to be able to hold herself up.........and all of a sudden, yesterday morning she decided, "Today I think I will stay up on my hands and knees."

Watch her in action!!!!

I am soooooo proud of her!!!  For those of you that do not have a child with delays, you don't realize how HUGE this is!  She has had to work soooo hard to be able to accomplish this!

You are a rockstar Madi!!!

Wednesday, March 14, 2012

Aerodigestive Clinic - Results

I know that I said I was going to do a post explaining the whole triple scope thing......well, life just got too crazy, as usual.  So, here I am a week later, finally writing the post.  But, at least I have some results of it to share, too!!

We spent most of the day last Wednesday at Children's Hospital, visiting the Aerodigestive Clinic.  It was a looonnng day!  We visited with the ENT, Pulmonary, GI, respiratory therapist, feeding therapist and speech therapist all in one day.  Oh, Madi also had a chest X-ray done too.  I was so thankful that Mark was able to come to the appointment with Madi and I.  I don't know how I would have entertained her AND talked to the specialists for 5 hours straight!

The next day we showed up at the hospital bright and early (5:45am check in time) for the procedures.  I was so nervous for my baby girl to go under anesthesia!  The triple scope consisted of a Laryngobronchoscopy, Bronchoscopy, Upper endoscopy with biopsy and pH impedance study.

I don't want to do all these procedures!!!


This was the ENT's portion.  He checked out the anatomy of her nose, throat, larynx, voice box, etc to see if there was an anatomical reason she is aspirating.  Sometimes there can be a cleft in the larynx that causes it and it is completely fixable.  Well....she didn't have that.  There is no anatomical reason why Madi is aspirating.

He did say that her larynx (right above her voice box) is narrow.  It should be more round but instead it is oval.  And even though her tonsils/adenoids are not huge, they are contributing to the sleep apnea that she has.  So, sometime over the summer he suggested we have a T & A.  While they do that, they will "clip" the sides of the larynx to help "open" it up.


This was the Pulmonary portion.  They took a scope through the vocal cords and into the airways of the lungs to look at the structure and get samples of fluid in the lungs.  The big thing we learned......she has Grade 1 stenosis.  What does that mean?  She has narrowing of her airways.  Approx. 25% of her airway is "blocked" due to swelling and inflammation.  Whether this is due to an infection or the result of the aspiration, we are yet to find out.  They sprayed a solution into the lungs and then sucked it back out.  Whatever "grows" from the stuff they sucked out will tell us whether she has an infection or not.  Since we haven't heard to put her on antibiotics, I think the inflammation is due to the aspiration.  Now that we know she is aspirating, hopefully we can get that under control and then swelling will go down.

Another thing we learned during this.....her windpipe is "flat" and soft.  It is supposed to be round and firm.    The combination of the "flat" windpipe and the narrowing of her airways.......it is no wonder she gets so sick when she gets a common cold.  She can't breathe!  There is nothing to do about the windpipe, hopefully as she grows and gets bigger, it will get more firm and round.  And hopefully her lungs will repair after the aspiration is under control.


GI's portion.......he took another scope into the first part of her intestine, stomach and esophagus.  He took samples of each portion.  The samples will tell us whether she has celiac disease (which people with Ds are prone to have), and whether she has damage due to another food allergy or the reflux.  The stomach and esophagus looked great, in terms of damage from the reflux.  So, it seems that the medication we are using seems to be doing it's job!  One thing he said is that kids with Ds that have reflux tend to grow out of it by the time they are 2 years old.  I hope that holds true for Madi!

At the end of the endoscopy, he placed a pH probe into the esophagus and then out her nose.  She had to have that in place for 24 hours, which is why we had to stay the night at the hospital.  The pH probe is going to tell us how often she is refluxing and to how extreme.

In Conclusion

We don't know what is causing the aspiration.  Most likely, the "low tone".  Hopefully she will grow out of it as she gets older.  There definitely are a couple of positives since we are thickening her fluids:  her reflux is even better than before.  Even though she has been on the Prevacid, she would still spit up from time to time.  And she definitely had the sour milk burps a lot.  Well, that is all gone!!  And she no longer has milk coming out of the sides of her mouth when drinking her bottle.  She used to get a bib very wet after every feeding but now, you don't even need one.  I think she is able to control the thickened fluids in her mouth vs. the thin liquids.

We will retest with another swallow study in a few months to see if anything has changed.  Hopefully she will be more proficient with the straw cup by then and they will test her with that, too.

The big thing we learned is the "why" Madi is so sick all the time and why she can't breathe.  The narrowing of the airways, flattened windpipe and low tone of her airways just make it next to impossible to get over a common cold.  With the aspiration getting under control and as she gets older and stronger, hopefully most of this will go away!

I am on Instagram now.......so, if you want to "follow" me, my name is cathairhouse.

Wednesday, March 7, 2012

End the R-word

Today is a day, where we all must unite together and pledge to end a horrible word.......the R-word.

-  "I'm so tired today, I feel so retarded."

-  "That driver must be a retard."

-  "That is so retarded."

These are all phrases I used to use on a regular basis.  That was, until I gave birth to one of the most beautiful girls in the world, that just happens to have an intellectual disability.

Now, I cringe when I hear those words.

I cringe because I know that someday, somebody is going to say those exact same words to my beautiful Madison.  And somebody will probably say those same words to Taylor to describe her sister.

I know that the majority of people don't mean anything when they say the r-word.  They don't mean any harm.  I know that I didn't when I used to say it.

But, what people don't know is that it is hurtful.  And mean.

If you are feeling the need to say the r-word to describe something......please use something different.
     "Dumb, silly, goofy", anything other than the r-word.

Before you say that hurtful, dreaded phrase, just think about this face before you do...............

Monday, March 5, 2012

14 months old ~ BIG UPDATES

Madi turned 14 months old last week and there are LOTS of things to update you all on!  There is some good and some bad.........

.........but, let's focus on the good first!

Some amazing things about Madi at the ripe ole' age of 14 months:

~  Consistently pulling herself to stand.  She has been doing this for about a month or so and she LOVES to do it!  Stands up against the couch, ottoman, chair, chalk board, everything really!

~  She is into EVERYTHING!  I can not turn my back for one second and she is causing mischief!  I have tried to mitigate some of it by having a drawer in the kitchen that is full of toys for her to play with but it doesn't always work.  Her ultimate favorite thing to get into is the cat food and cat water!!  She slithers across the kitchen in 2 seconds flat and within 1 second she has a 2 foot radius completely covered in water.  My floors have never been so clean from the constant wiping up of water.

~  As I just said, she slithers.  Or at least I think that's the best way to describe it.  She doesn't crawl on all fours, just army crawls.  But, her army crawl is so wicked fast she looks like a snake slithering across the floor.  I am constantly amazed by how fast she can go!

~  She is a dancing fool!!  She has always loved music but now she is really starting to get the whole "jamming" out thing!  She twists back and forth and bops up and down anytime she hears a glimpse of a song come on.

~  As from the previous post, her sister and her are bonafied "crazy bouncing girls"!

Who can slither the fastest across the floor?!?!

~  We are working on the See and Learn reading program.  It's kind of a slow start because she prefers to just eat the cards, instead of looking at them.

~  She is getting really good at using her pointer finger!  She doesn't necessarily bring her other fingers back but she definitely isolates her finger to use it and point at things.


I've told you all kinds of amazing things that Madi is doing but unfortunately, we have some new medical issues we are dealing with.  :(

This week, Madi is going under and having a "triple scope" procedure done to learn about her GI tract, lungs, nasal passages and a whole other slew of information.  Well, before we could this, the Aerodigestive Team wanted her to have a Modified Barium Swallow Study done to make sure she is not aspirating.  We have never had any concerns about her aspirating, as she has never had any symptoms of it.

Well, on Friday we discovered Madi is silently aspirating.  I say "silently", because she never even flinched  when the fluid went into her lungs.  She didn't gag, choke, cough......nothing.  She just kept on drinking.

So..........now we get to thicken her liquids to a "Nectar Consistency".

I'm telling ya, it is disgusting.  Her milk now looks like sludge.  I make a day's worth of it in the morning and as I am pouring it into her bottle, it ssllllloooooowwwwllly oozes out and plops into the bottle.  As you can imagine, if she has to suck this thick stuff from the bottle, the time it takes to do that is going to double. The only positive I can see in all of this is that maybe her mouth is going to get really strong because she has to suck so hard!

Why is she aspirating?

Well, it could be 3 different things.  1st:  The reflux could be making everything all irritated and inflamed and could be causing it.  2nd:  She could have something mechanically wrong with how her airways, voice box, and all the different parts in the throat work together when she swallows.  3rd:  The standard response for everything associated with Down syndrome, Low tone.

We will find out some more information this week when we have this procedure done.  They will be able to physically look at all the mechanics of her throat to see if it's that.  If it is, there could possibly be some sort of procedure they can do to fix it.  If it's reflux, getting the reflux under control will help.  And as she grows out of the reflux (hopefully), then the aspirating, in theory, should go away too.  If it's the low tone, well, maybe she will grow out of it, maybe she won't.

I have to admit, I kind of have a bad attitude right now.

I'm angry.

I'm angry that we are dealing with, yet, another thing.

And it's not just a matter of thickening the liquids, it's the fact that they are telling us she can't have popsicles or ice cream.  Why?  Because as it melts, it becomes a "thin liquid" in her mouth and she could aspirate it.  Okay, what's the big deal with not being able to have ice cream?  It is a BIG deal because every child SHOULD be able to have ice cream!!!  That's what being a kid is all about!  Right!?!?  Maybe it's only for a short amount of time, but I am having a hard time seeing that.  I am envisioning her being 8 years old and still thickening her liquids and not being able to have ice cream.

I know, I know......just wait and see what they tell us at the end of the week.  But, that is easier said than done.  I am a person that wants answers now.  Like, right now.

So, enough of the pity party.

Tomorrow I will write another post and share all the details of this triple scope.  It is actually pretty amazing all the things they can do!

We will end on a positive note..............a beautiful picture of my baby girlie!!!!