Friday, October 12, 2012

Day 12 of 31: Flashback Friday!

Look at this picture from a year ago today.......

And a year from tomorrow...... so much can change in a year!!!!

Wednesday, October 10, 2012

Day 10 of 31: Gluten Intolerant

I have mentioned before that Madi is gluten-intolerant.  I always said I was going to post more about it......but never did.  So, here goes.

People with Down syndrome have an increased risk of having celiac disease.  Depending on what statistic you read, approximately 10% of people with Down syndrome have celiac disease.  For many, the only symptom that exhibits itself is bloating.  For others, it can be diarrhea, constipation, intestinal discomfort or failure to thrive.

Ever since we had started to truly introduce a variety of solid foods, with the exception of purees, she had this HORRIBLE smell and the soft/diarrhea diapers.

Madi's journey into finding out about her gluten-intolerance started with the triple scope procedure we had done with Aerodigestive Clinic this past March.  During the scope procedure, they did a biopsy on her intestines and stomach to test for Celiac Disease.  The results came back as negative so they suggested we go to a food allergist to see if an allergy was causing the symptoms she was having.

We went to the food allergist.......results were negative.  They said the tests are not 100% accurate at that young of an age but as of now, they were negative.  They suggested we go back to the Aerodigestive team to talk to them about possible lactose intolerance.

So, where did that leave us?

You know how sometimes momma's just seem to know something is wrong, even though the doctors/test results say otherwise........well, I just had a hunch that it had something to do with wheat, gluten or something along those lines.

After talking to a couple of other Ds momma's that have already been there and done that.......I learned that the Celiac Disease biopsies are not really that accurate.  They can be negative one time and 6 months later be positive.

So, I just decided that I was going to go gluten-free with Madi and give it a try.

Within a couple of days, we started to see improvement!  We have now been gluten-free for 5 months or so and I definatley see a dramatic difference.  The stinkiness is gone, as is the diarrhea diapers.  Yay!!!

It was kind of overwhelming at first because gluten is in EVERYTHING.  People have asked what exactly is gluten.....well, gluten is anything that has wheat, barley and rye.  But, unfortunately, many additives, natural or artificial, can contain gluten.  So, anytime you see the words:  Artificial flavors, natural colors, flavoring, seasoning, hydrolyzed vegetable protein, etc, etc (it's a LONG list) have to watch out, it could have gluten in it.

Another thing you have to watch out for is the ingredients in a product may be naturally gluten-free, but the product may be contaminated from where it was manufactured at.

That seems overwhelming doesn't it!!!  But, actually, there are so many foods these days that are gluten-free.  It's just a matter of looking for it.  Even your every day grocery stores have some gluten-free products.  You don't have to go to Whole Foods for everything.  The only problem we are finding is the cost of it.  Gluten-free products are defiantly more expensive.

At the end of the day....a Celiac disease or gluten-intolerance diagnosis is not the end of the just takes some getting used to.

Tuesday, October 9, 2012

Day 9 of 31: Race for the Cure and Breast Cancer Awareness Month

Yes......I missed a couple of days already on the 31 for 21 Down syndrome awareness blog was hard to get it in over the weekend.

But, I am back at it today and my post has nothing to do with Down syndrome......because, like I have said before, our lives do not revolve around Down syndrome.

This last Sunday, my mom and I participated in the Race for the Cure walk.  For those of you that are new to my blog or just new friends in my life.......almost 4 years ago I was diagnosed with breast cancer.   If you would like to read a little bit about my breast cancer journey, you can go here .....I wrote a post last year on my 3 year cancerversary.

This year was pretty low key with the walk.   My mom and I joined up with my really good friend and cancer buddy, Andrea and her team.

Andrea and I
Andrea and I were diagnosed just 3 months apart and have the same oncologist.  That's actually how we met!!  She has been such a good friend to me and I don't know what I would do without her in my life!!  She truly understands what I have been through with the whole cancer journey and she helps calm me down when I am having a moment of fear and panic that the cancer will return.

See these names on my Celebration sign.......we are all women who were diagnosed with breast cancer in our 30's.  We are all alive and doing fabulously, too!!!

But, this should show you that breast cancer has no age requirement!  Every one of us gals did NOT have a family history and we were in our 30's.  Don't be fooled by the "no family history" and "you're too young" thing!!

As most of you know, October is also Breast Cancer Awareness month (in addition to Down syndrome Awareness month).  I am choosing to spend the majority of my time bringing awareness to Down syndrome, as we are bombarded with the Breast Cancer awareness through all the different media sources.   But, if you do take away one thing from this month........make sure you are doing your monthly breast checks!!!!!  I would have never gotten diagnosed if it wasn't for me finding my lump!

Friday, October 5, 2012

Day 5 of 31: School Picture Day!

Today was school Picture Day!!  Thankfully, Madi felt good enough to go in for pictures but then I brought her home right afterwards.......why push my luck with her feeling good to then have it back fire on me for the weekend.

I know that I am their momma.......but, seriously, I thought they looked so cute!!

Taylor......she is getting entirely WAY too grown up!!!

Happy Friday everyone!!!!

Thursday, October 4, 2012

Day 4 of 31: You've Been Boo-ed!!

Last year we started the tradition of "boo-ing" a couple of friend's houses in the neighborhood!  You gather some goodies..... quietly place it on their doorstep.....ring the door bell.....and HIDE!!!

Taylor LOOOVVEESS doing this!!!

I was not familiar with this tradition until a couple of years but now that I know about it........I am ALL over this every single Halloween year!  I love myself a good tradition!!

If anyone has never done it, just go to and check it out!

Madi had a complete turn around today and she actually had energy to go outside and help us out with the "booing"!

Armed with her goodies!

Madi was a little excited to see her sister so excited!

We are in full on Halloween mode around here.......dressing in festive Halloween clothes!

Wednesday, October 3, 2012

Day 3 of 31: Update on Madi after surgery

I wanted to give everyone an update on how Madi is doing........

.......she's not doing the best.  :(

To catch up on everything since Friday, we left the PICU on Friday night and went to the regular floor of Children's Hospital.  She did pretty well that night and they were able to reduce her o2 levels down to 3/4 liter.  (Her base level at home every night is 1/8 liter)

She drank pretty well during the morning, so they gave us the thumbs up to go home in the afternoon.  But, ever since then, we have struggled with her to get the fluids in her.

Before surgery.......hanging out in the waiting room!

Mom........I want to eat!!!!

Part of the problem is she has SOOOO much phlegm and mucous that is coming out of her.  I am not sure if she has caught a little cold that is contributing to it or what.  Not to be too gross, but the mucus is the kind that is really thick and stringy and it makes it next to impossible for her to swallow it.  If she can't swallow the mucus, she certainly cannot swallow milk or anything else.

Second, the only thing she drinks is milk.  No water, juice, pedialyte, nothing.  The milk is phlegm producing that is only adding to the mucus problem.  We are watering the milk down to about a 50/50 ratio, but then we have to thicken it to a nectar consistency with the Simple Thick.  The nectar consistency adds to the mucus in her throat, too.  

I love hospital cribs........they are so bouncy and fun!!!

Thank god for toy rooms in the was our saving grace while waiting for the surgery in the afternoon.

I have resorted to taking the snot sucker for her nose and using it on her mouth.  I don't go deep inside, as I don't want to create a pressure that could harm the healing of her throat.  But, I just use it around her teeth and the front of the tongue to suck up the excess junk.  Believe it or not.....she sees me coming with it and she opens up her mouth.  She KNOWS that it is going to help her out!

The third problem we are having is the pain meds.  We just cannot get a handle on controlling her pain. And, unfortunately, there is nothing else we can do.  Any other medications that would normally be given....she can't have.  They make her heart rate drop to dangerously low levels.  We are alternating between Ibuprofen and Tylenol every 3 hours.  The medicine takes about 30 minutes to kick in and she feels great and spunky for about an hour.  And then we have 1 1/2 hour of crying, cuddling and just overall ickiness.  

Cruising the halls of the PICU!

Getting the pain meds in is an adventure in itself.  It literally takes 2 people to give it to her.  One to hold her down and the other to squirt it in her mouth.  We are at least doing the Tylenol in a suppository form so that has eliminated those sessions of wrestling with her.

So......that's where we are at.  Every day we teeter on the edge of having to take her to the hospital to get IV fluids.  She is supposed to be getting 20-24 oz of fluids in her each and every day.  We have yet to reach that goal.  She has been getting 15-18.   But, on Monday, she had only taken in 5 oz. and it was 1:30 in the afternoon.  The ENT nurse was a little upset when she heard this.  So, we are trying harder to get the fluids in her now.  At this point, they only time she will drink is if she is watching Signing Times videos.  So....... we watch Signing Times videos all day in the hopes that she will drink a little bit.

Eating.......she has only ate twice since last Wednesday.  Yesterday afternoon and this morning.  She wants to eat.....she keeps going to the fridge and pantry and signing eat but as soon as you put something in front of her.....she refuses it.  And we have tried EVERYTHING!  But, I guess at this point it is more important for the fluids than the food.

I'm hoping that we are going to wake up in the morning and she is going to have taken a turn for the's to hoping!

Tuesday, October 2, 2012

Day 2 of 31: Step Up Walk for Down syndrome

About a week and a half ago we celebrated our 2nd time participating in the Step Up for Down syndrome Walk!  It was a gorgeous, sunny day to get together with family and friends to celebrate the one and only..........

I know I am a little biased here.....but, seriously, can she get any cuter in that picture!!! :)

This year's walk was the most successful year so far is raising money and awareness for the Mile High Down syndrome Assoc.  (MHDSA).  4200 people participated in the walk and raised $282,000 for the MHDSA!!!  Can you say AMAZING!!!

Our team this year was smaller than last year.......with me being back to work, I just didn't have the time nor energy to try and fundraise.

Even though our team was small.......we were not lacking in enthusiasm and spirit!!!!

Angela and Cooper


Andrea, Cory, Max and Alex


Do you need a couple more beads, Sienna?

Riding in style!

What's up, mom?

Grandpa, Gigi and Brandy

Gigi and I

I will be honest with you all about something, though........last year when we did the walk, I remember saying "Oh, Madi will walk across the finish line next year!  There is NO way she won't be walking by then.  She will be 21 months old!"

Well, Madi is definately taking steps on her own but I envisioned she would be full-on independently walking by herself.  You know, walking 20-30 feet across the finish line by herself.  So, I have to admit that the few weeks leading up to the walk, I was a mad woman trying to get Madi over the hump from taking 5-6 steps to the distance that I wanted.

And I was a little disappointed as I realized that this was not going to happen.

So, again.....I had a little lesson in patience.  And a reminder that Madi will do things when she is full on ready to do them.  It is how she has been with everything.......sitting, crawling, cruising, talking, sipping out of the straw, etc, etc, etc.....

By the time the day of the walk came, though, I was just so happy that she was healthy this year.  Last year, she had a ton of congestion and was miserable pretty much the whole day.

So, instead of walking independently across the finish line..........

..........she pushed her little baby doll stroller!!!!

Big sister......the biggest cheerleader in the world!  If everyone could have a big sister like her!

Here's a few more photos of the awesome day celebrating Madi!!!

Thanks to all those that helped make the Step Up Walk an awesome day!  And thanks to those that donated to our team!