Saturday, July 30, 2011

Madi, Madi, Madi

So,we went to the pulmonologist this week to find out why Madi is still needing oxygen.  We ended up heading over to the Heart Center of Children's Hospital to have an echocardiogram done on her heart.  They thought the pulmonary hypertension might have possibly come back.  Come back???  I didn't know it can but I guess it does sometimes.

Anyways......the results were good!  Everything looked the same as her last echo done in May.  Yeah!!!

No, it is not winter here but I have this stinkin' cute snowsuit from when Taylor was a baby and I just HAD to put it on Madi, too!!!!

Our next step is to do an overnight sleep study at the hospital.  It will test absolutely EVERYTHING!!  And when I say everything......I mean everything.  How much her chest moves up and down when she breathes, the placement of her tongue when she sleeps, the amount of carbon dioxide she releases, etc.  It's actually kind of amazing that they can do all that.  Not sure when we are going to do the sleep study.....just waiting on the hospital to call and schedule it.

Also this week I had a little bit of a scare with her.  When I was getting her undressed to give her a bath, I noticed one of her nipples was a darker color.  So, I felt it and immediately noticed a hard pea-sized lump.  Needless to say, I freaked!!!!  I am only 2 1/2 years out from my breast cancer, of course, I thought the worst!

And then, to top it off, I went online and googled "youngest person with breast cancer".......well, I should have known not to do that, but I did.........and the youngest documented girl was 3 years old.  I knew all about a girl from California who was 9 and had a double mastectomy.  But......3!?!?  Really?!?!

I took her to the doctor the next day and had them check it out.  They thought it could be hormone related or even possibly a lymph node.  They said to keep an eye on it and if it got bigger we would do an ultrasound. has gone away!!!!!  It is great that it went away because.....well, that's great that it's gone.  But, it is also good because poor Madi would have been subjected to me feeling for it a hundred times a day until we had it looked at more in depth.  I would NOT have stopped thinking about it until we had some definitive answers.

The whole thing freaks me out!  Since my diagnosis, I have often wondered "what if my girls get it from me, now?"  How am I going to screen them?  Will I allow them to take the pill when it comes that time? Should I get the BRCA test done on them?  And when?  So many things to think about.......

Friday, July 22, 2011

Fabulous Picture Friday!!

I have several pictures from the last couple of weeks that I have wanted to here goes!!

I'm a big girl sitting in the highchair!

Look at those little baby toes!!

"Ok, mom, I have had enough of this chair!"

Working on my kneeling at my piano...

"I love Mickey, just like my big sister does!"

Taylor decided to dress Madi up in her princess clothes, too!

I love the look on Madi's face........she's looking at her sister like, "Really?!?!"

Madi had a visit from her friend, Lily!

Happy Weekend everyone!!!!

Wednesday, July 20, 2011

National Down syndrome Convention and pulmonologist

We found out the results from Madi's O2 challenge last week.........she failed miserably.  They would like her o2 saturation levels to be above 90% at least 90% of the time.  Well, she was below 90% - 33% of the time.  Ouch!

I knew that she was not going to pass, though.  We did the test for 2 nights in a row and I went into her room several times throughout the night to check the monitor and saw that her levels were about 87%.  I had the alarm on the monitor set to go off at 86%, and I definitely heard it several times.

So, the next step in this ballgame is to see a pulmonologist.  Since she no longer has the pulmonary hypertension, there is something else that is causing her oxygen levels to drop.  We just don't know what yet.  So, next week we will be heading off to Children's Hospital to see yet another specialist.

I am hoping that maybe she just has sleep apnea or something.  Maybe her adenoids or tonsils are large and are causing her levels to drop when she lays down.  I don't's just very frustrating.


Mark and I are headed to San Antonio in a couple of weeks for the National Down syndrome Convention!!  I am really excited to be going to this.  One of the sessions I am most excited about is the pre-conference sessions we are attending about speech therapy.  I am anxious to learn as much as I can to help her to be able to communicate.  I really feel like if she is able to speak clearly, it will help her get that much further in whatever she wants to do with her life.

I have to admit, though, that I also have some anxiety about going to the convention too.  We will have the pleasure of being in the company of many people with Down syndrome........various ages will be represented.  I am nervous to see some of the older people with Ds.  What if I encounter someone who is not doing very well? And I guess you can ask "what's considered doing well"?

I have so many dreams and aspirations for BOTH of my girls.  And really, just because Madi has Ds, my dreams for her have not changed.  I fully expect her to reach her highest potential.  She will not get any slack.  I will not allow her to use the excuse that she can't do something because she has Ds.  I really believe that if I do not have high expectations of her, she will not reach her full potential.  (This is true of any person, whether they have Ds or not!)

So.....when I ask the question, "What's considered doing well?"  What if I meet an adult with Ds that isn't able to communicate?  What if this person is not able to live outside of the home of their parents at the age of 30?  What if this person is not able to have a job?  What if this person has never had a romantic relationship?

These are some of my fears that I have for Madi.  I don't know......maybe you can say I have not fully come to accept her diagnosis of Down syndrome.  I feel like I have......but maybe I truly have not.

I try to live each day as only today.  I try to not get too worked up about what Madi is going to be able to do in a year.  Or 5 years.  Or 20 years.  But, when I go to this convention.......I am going to be forced to face it.  And that scares the living s**t out of me!!!

I don't want to have to think about the possibility that Madi will be 30 years old and living at home!

I am hoping that I will get there and if anything, be inspired by how GREAT everyone is doing!!  I do know that the actress from Glee (can't think of her name) that has Ds will be speaking.......which is awesome!!!!  I can't wait to hear her speak......she is a true inspiration!!!!

Putting aside my fears.......I think the convention is going to be amazing!!!  I am excited to walk around to all the different vendors and exhibits to find any nifty tools and tricks to use to help Madi.  And most of all, I am excited to listen to all the different speakers.  I need to figure out what sessions I want to attend and which ones are most relevant to where we are at with Madi's age. can you not be absolutely in love with that little face!?!?  She fell asleep in my arms this afternoon......those are moments that I cherish!

Tuesday, July 19, 2011

Weekend of 1st's for Taylor

This last weekend was a HUGE weekend of first's for Taylor!

We started out the weekend by going to her 1st movie at the movie theatre!  She just recently began to sit through an entire movie at home so we thought we would give it a try and do the "Real Deal"!!

We went and saw Winnie the Pooh.......which is really cute, by the way!

When we first walked into the theatre, she didn't quite know what to think.  As we walked down the dark hallway to go to the seats, she got a little scared and slowed waaaaaayyyy down.  When we turned the corner and she saw the big room with rows upon rows of seats, her eyes were HUGE!

She sat through the beginning ads/previews in such concentration at the screen.  I would talk to her and try to get her attention but she was just fixated on the massive screen ahead of her!

I got her one of those kiddie combo popcorn packs but she eyed the large box of gummy bears and just HAD to have them.  Well, she proceeded to eat the entire thing before the movie even started.  And bear in mind.......we went to a 9:00 am movie, so this is a LOT of sugar to have so early in the morning.

She did really good throughout the movie........started to get a little antsy towards the end but for the most part, sat and watched the movie the whole time.  Unfortunately, after all the sugar she had, there is the inevitable crash that follows it.  And, boy, did she crash!


The next day, she had her first encounter of going to a water park.  We went to Water World.......America's Largest Water Park!!!  (yes, that sounded like an ad!)

We got there at opening time at 10:00am and stayed all the way to closing at 6:00pm.  That is a LOT of sun and water for a little girlie!!

But, she had a BLAST!!!  Her favorite rides were the ones that involved tubes!

I have to say........I am so incredibly proud of how well she patiently waited in line all day.  The lines were horrible and she never got antsy or complained nor did she try to cut ahead.  She did really, really well!!!  If we had tried this adventure last summer, it would have been a different story.  I am positive that we would have left after the first hour.

The little girlie also did not have a nap that day, too!  She laid down but just couldn't fall asleep with all the noise and the heat.  So, this is the result of a long day in the sun........

She didn't even make it to the car!  She fell asleep in my arms walking to the parking lot.

I wish I would have taken pictures throughout the day but I was too busy enjoying myself on the water rides myself!!!  It's funny, as we were driving there, I think I was more excited than Taylor was!  I was squirrely in my seat and hooting and hollering out!  I truly am a little girl at heart and LOVE, LOVE, LOVE water parks, carnivals, festivals, etc.

It was a GREAT weekend!!!  It was the true essence of what summer represents!

Tuesday, July 12, 2011

Independent Sitting!!!!

This is going to be a post with some SERIOUS bragging!!!!!!

Madi sat independently for about 1 minute today!

During PT yesterday, she sat for about 10 seconds, but today it was 1 minute!

I am so insanely proud of her!!!!

She seems to sit the best when she is playing with her ring.  She LOVES her pink, black and white ring!!

What's funny about all of this, is just last week, I was feeling like she was kind of going backwards with her progress.  She was doing so well prop and tripod sitting and then all of a sudden she couldn't do it.  I was starting to get really frustrated and down.

But, you know, if I recall, this is not the first time that she kind of goes backwards and then all of a sudden she has mastered a new skill.  Maybe this is what she is going to do.

I don't know......I don't care.......I am just really proud of her!!!!

Yeah!  Go Madi!!!

Sunday, July 10, 2011

The Zoo

Today was a great day with just the girlies and I!  Mark has been out of town on a trip so we were hanging out by ourselves this weekend.

I decided to become ambitious and take the girls to the zoo by myself.  Usually someone else is always with us on an outing like this, whether it be Mark or my mom (Gigi).  But, today, I was all by myself with the both of them.

You may be thinking "What's so hard about that?" haven't seen the almost 3 year old girl that is stubborn and hard-headed to the end!  When she decides she doesn't want to do something or wants to do something she can't out!  You are going to have some sort of meltdown on your hands.

This is not a big deal at home......I just simply ignore her.....let her throw herself around and kick the floor and cry.  But, in public, you really don't want to be "that" family.  And then, to have a 6 month old you are trying to entertain and take care of at the same time and push a double stroller and diaper bags, etc, etc....  Doesn't sound like much fun, huh?!?!

We showed up at the zoo right at opening time of 9:00am.  We looked at a few animals but then, I needed to give Madi a bottle.  I had Taylor play in a playground area while I fed Madi.  This was great until she decided to chase a chipmunk around.  Well, the chipmunk had something else in mind for her.  He started chasing her.  Needless to say, this FREAKED Taylor out and she went running away.  Well, the clumsy girl that she is......she tripped and went face first into a puddle of mud.  Yes, what a great way to start our little adventure!

Actually, I was pleasantly surprised.....she got over it pretty quickly after I got her cleaned up.

After that, it turned out to be an awesome time!!!

Taylor was able to ride a pony.......just getting herself "warmed" up for her western-themed birthday party!!!

Madi went on her first carousel ride!  She absolutely loved it!  She was giggling and smiling the whole ride!  Unfortunately, I wasn't able to get any pictures.......kind of hard to hold her up and take pictures at the same time.

The rest of the afternoon was great!

Taylor has always shown interest in Madi......but now that Madi is smiling and laughing at her, she loves it!

She likes to get her attention and play with her.

And sometimes she loves on her.........just a little too hard.....

Taylor decided to check out whether or not Madi needed changing.....

I finally feel like I am able to play with both of the girls at the same time and do the same things together.      Up until now, it has been I am either playing with Taylor and Madi hangs out or vice versa.  Not really "together".  But, now that Madi is able to do some more things physically and is more interactive with us, it is just so much easier.

Taylor's new thing lately is all 3 of us girls laying in mom and dad's bed together.  It is so cute because both of the girls get kind of giggly and silly when we do it.

Again, Taylor likes to love on Madi a little too hard.......

It was a great day!!!

Thursday, July 7, 2011

Appointment and Pictures

I finally took Madi for her 6 month appointment.  I really wasn't too late, just a week and half.  But, as I posted before, I was kind of dreading it.  Dreading getting her blood drawn for the thyroid and CBC test.

Well......let's start with the good news first!

She is 15 lb. 4 oz. and 25 1/2 in. long!  She is in the 90% for both height and weight on the Down syndrome charts.

I guess whatever we are doing, just keep doing it!

But, the icky part......I took her to Children's for the blood draw.  The poor little thing got poked 7 times.  3 times in each arm and then a final one in her hand, which ended up being the winner.  Let's just say she SCREAMED!  But.....she recovered very fast.  That is one thing about Madi......she may scream and get upset but she gets over it really fast.  The nurse's even got a smile from her after it all!

This next week, we are also going to do another O2 challenge.  She is off the oxygen during the day but on the last test didn't pass it at night.  Since it has been a couple of months we are going to try again with the challenge at night.  I am really hoping she passes.  It's not a big deal anymore to have her on it since it is just at night.  But, I would be just be that much more reassured that everything is okay with her.


Today I took the girls to get pictures done at Babies R Us.  I mainly went for Madi's 6 month pictures but I decided to have some done with Taylor too.  I haven't had any pictures done of her since she was 18 months, besides her school pictures.

I was very pleased with how they turned out!  Madi had quite a few BIG smiles!  It is so nice.....she is starting to smile at other people these days.  She has really only smiled for me, Mark, my mom and dad.  But, now, she is dazzling everyone else with her thousand watt grins!!!!!

Look at those dimples!

I LOVE this picture!

This one ..... I am not really sure if she is smiling or just getting ready to bust out in a scream!

I'm sorry for all you Facebook friends that are reading this.....I know I posted these on there so you are seeing them twice.