Wordless Wednesday

Crazy hair day at dance class

Pig tail time!  I love that she is letting me actually do something with her hair now!

Supported sitting......I'm such a big girl!

 A little bit of a smile!

My wiggle bug is awake!

First off.......our new nickname for Madi is Wiggle Bug!  I am sure there will be many more to come in the future but as of now, Wiggle Bug is a good description.  If she is not sleeping, her arms and legs are a-moving non stop!

She is awake.......I am finally seeing a light in Madi's eyes.  She has been a sleepy baby, which most are for  a few weeks.  But, she has been even more so.  From what I have read and heard, this is very common for babies with Ds.  They are very content and barely cry.  This is true for Madi.  But, even when she has been awake, I haven't really seen a whole lot of recognition and focus in her eyes.  She seemed to look through you or completely avoid all eye contact.  I would usually get good focus and feel like we were bonding when I was feeding her but not at any other times.

Well, the past few days (really, since the day she 1st smiled) she seems to be awake!  You can actually see the "wheels turning" in her brain when she is looking at you.  I finally feel like she is truly seeing you and truly looking at things.  I have been kind of worried the last few weeks, thinking maybe there is something wrong with her vision or maybe we are starting to see the cognitive effects.  But, nope, she is there and she is letting us know she is interested!!!  

In the past, when we got good eye contact, I have always felt like she was looking deep into my soul.  But, now I KNOW she does and there is such a peaceful feeling when she is soaking in every little details of my face.

Taylor likes to put stickers all over Madi

Look at those eyelashes!!!

I am feeling so much more positive than I was yesterday........but isn't that how life usually goes.......a good day always comes after the bad.  Just, hopefully, there isn't too many bad.....

Hard Day

Today has been a hard day.  I am feeling so completely and utterly overwhelmed by everything!  Madi is doing good so I don't know why this all of a sudden came over me but it did.  I guess I am feeling overwhelmed by all the help I am going to need to give Madi over the next few years.  You don't realize how easy it is when you have a healthy baby with no disabilities.  I never had to think about how Taylor was going to learn to hold her head, sit, crawl, walk etc.  Did I do some tummy time with her?  Sure, but it wasn't structured and if I didn't do it for a couple of days it was no big deal.  With Madi, I NEED to be doing these things several times a day.  And even when I do them several times a day, it is going to take 3x or maybe even 10x longer for Madi to be able to do it.

I guess that's part of the low tone.......not only does she have to work harder and longer to attain a milestone but it also will take her longer to do it well.  Her muscles don't have the endurance so she gets tired out real fast.

I don't know......it just seems really overwhelming at times.  I know that I must just take one day at a time but that is really, really hard for me.  That's not in my personality.  I am a planner.  I am always looking ahead.  I push myself and expect myself to succeed better and faster.  And I think the same about my girls.  So, it is really hard for me to accept that Madi is going to do things on her own timeframe.  I guess this is going to teach me some patience.......maybe????

Don't get me wrong, I will have HIGH expectations for her.  I just have to accept that they might take her a little longer to achieve.  There is NO doubt in my mind that she is going to be successful in life and be able to live life to the fullest!

Okay.....I am feeling a little better already.  I guess I just needed to write this down and get it off my chest.  I must read the poem that I quoted yesterday and remember that she will do everything in her own time.   There was my 1/2 hour of freetime I get in the day, time to get back to taking care of a 9 week old and 2 1/2 year old.

Creed of Babies with Down syndrome

The Creed of Babies with Down syndrome
My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace






I saw this poem on another blog that I follow and I just HAD to put it on mine.  Very moving.......

1st Smile!!!

I got a 1st smile from Madi tonight!!!!  I am so utterly and completely ecstatic about it!!  We have seen some little smiles when she is sleeping but never a true social smile.  And I didn't get just one......I got five!!  This may seem kind of trivial to some but you have to understand that it is common for children with Ds to not smile until about 4 months or even later.  That just was not going to cut it for me!  I have been trying and trying to get that smile from her and I must say.....it was glorious!  It completely lit up her face!  I cannot wait until they come very frequently so I can capture one with the camera.

2 months old

Madi had her 2 month appt. this morning.  She is growing like a weed!  She is 11 lb. 1 oz. and 22 1/4 in. long.  She is in the 95% for her weight and 80% for height on the Ds chart.  Did you know that there are separate growth charts for children with Ds???  I never knew that until all of this.  Most of you probably don't know that the average height for girls is 4'11 and for boys is 5'4.  That's pretty short.  It will be interesting to see how tall Madi is going to be.  If she is anything like her sister, she will be on the taller side of things.

Madi's PT session on Monday went good!  I was very encouraged again after this session.  She is very strong and moving right along with things that typical kids do.  Her head control is getting better and better!  The PT has us starting to do some supported sitting exercises.  It has been crazy.....the last couple of days Madi will use her feet to push herself forward when she is on her belly!  What lack of muscle tone?!?!  :)

I absolutely LOVE this picture!  Look how long their eyelashes are!

It is amazing how observant Taylor is.  We always are working with Madi to keep her hands in the midline position, otherwise they just flop to the sides.  The other day, I was holding Madi and one of her arms flopped out and Taylor ran over and grabbed it and told her to keep it at her stomach.  I was in shock to realize how much Taylor has noticed when we are holding Madi!  I am thinking she is definitely going to be a huge helper to her!

Nails and the Rise School

Taylor has decided that she enjoys being "girlie" now and we had to paint her toenails this morning.  But, she also decided that she had to paint daddy's toes too!  (Mark will kill me that I am showing this evidence of his nails being painted!)

This afternoon we went to the Rise at the Ranch.  It was a fundraiser for the Rise School of Denver, which is a school for children with disabilities.  The kids start at 1 year and can attend there until they are 6.  50% of the kids that attend have some sort of disability and 50% are typical.  The school provides PT, OT, ST and music therapy.  We are probably going to be sending Madison there when she turns 1 and possibly have Taylor attend with her until she starts Kindergarten.

It was a mix of emotions going to this fundraising event.  It was great to see so many other families there with children just like Madison and to realize that we are not alone.  In that sense, it was very encouraging.......they were all parents that looked just like us.  But, it was sad, too, to see all those kiddos.  You could tell that some of them definitely have struggles and it broke your heart to see that.  Kids shouldn't have to face those kind of challenges at so early of an age.

I am really looking forward to touring the school and meeting with the director soon.  The school is a "must" for a child with a disability in the Denver area.  We have to decide pretty soon, too, because there is a waiting list and she might not get in right away.

Taylor had a good time, though!  Playing in the bouncy castles, painting her fingernails, dancing to the band and making a bead necklace.  Madi.......she just slept through it all!  I couldn't believe how she slept through the band, which was really loud!  Taylor had a little crush on one of the guitar players......kept giving him flirty looks and dancing right in front of him.  It was too cute!!

Tomorrow is PT day!  Anxious to learn some more exercises we can be doing with Madi!  Hopefully, she will be a little more awake than she was the other day.

Hope everyone had a great weekend!!

Day of Pictures

Nothing much has gone on the past couple of days......so I thought I would share a few of my favorite pictures from the last few weeks.

Can you say sassy!?!?  I am scared for when she is 15!

Wearing my pink wig from my chemo days

Showing lil' sis' the ropes of the jungle mat!

She looks so pretty here!

It kind of looks like Madi is smiling.......her sister will definitely be getting the 1st true social smile!

Working hard!

A Great Day!

Madi had her 1st physical therapy session today with the early intervention team.  It went great!!  She was super sleepy in the beginning but she finally woke up and showed her PT, Terra, her stuff!  Terra said she is doing good for about 2 months old.......doing a lot of stuff that typical kids do at this time.  So, here I was worrying the other day over nothing.  I think it's hard because I just don't know what to expect.  The timeline for development is so varied.  For example:  a child with Ds will walk anywhere from 12 months to 48 months.  Okay, that is a HUGE difference in time.  If only we had a magic crystal ball.......

Some other news about Madi is we have discovered that she has reflux.  I guess she has what they call "silent reflux".  She doesn't have the classic spitting up/vomiting so we didn't know that she had it.  She does the classic arching of her back but she usually doesn't do it until 30-45 minutes after eating, which is when we are doing her exercises.  So, here we were thinking she just didn't like the position or movements but it is actually the reflux.  Poor girlie!!!  So, we have started her on Prilosec, so hopefully that helps!

A much better day!!

Today I am feeling much better about everything!!  Madi did AWESOME with her therapy work today and was really holding her head up a lot better.  We also are seeing signs of a smile that is about to emerge!  I can't wait until we get that 1st true genuine smile!!  Of course we see the ones while she is sleeping and passing gas!  :)  And I will just tell you, from the smiles we have seen while she is sleeping, when she does give us that 1st smile, it is going to light up the room!!!

Big Sister Helping with tummy time!

I am feeling so in love with her today!  I am so in love with both of my beautiful, precious girls!!  I can't imagine my life without either of them!

How can you not LOVE those two cute little faces!?!?

Back to square one....

Today I feel as if I am back to square one.....the day that we got Madi's diagnosis.

I feel like I have come SOOO far in accepting and coming to terms with Down syndrome, but nope, not today.  I have been telling myself for the past month and a half that she is just a "baby", a "newborn", they don't do anything anyways.  But we are past that point now.  She SHOULD be doing something.  Smiling or holding her head up, I don't know, something.  We have been working with her, doing all the things that Dr. Winders (the PT at the Children's Hospital) has shown us but I NEED to see some results.  Something.  Yes, she is holding her head better than before and she is getting stronger.  But, I need more!  I don't know......I am in a funk!  And it's not that she is not showing signs of starting to smile.  But I need her to bust out in a big ole' grin.

Okay......it is starting to sound like all I am talking about is what I need.  And it's not about me....it's about Madi.  But, I need something in this whole thing to keep me going, keep me positive.  If I am going to stay strong and keep going through all this, I need to see that we are making some progress with her.

I think what is hard is that we have a couple of friends with babies that are similar in age and it is hard to see those babies starting to do something but not see the progress in Madison.  I know that you can't compare kids but it is really hard not to.  And it is the first time that I am truly starting to see her delays that she is going to experience.  And it completely and utterly breaks my heart!  I don't want things to be a struggle for her!!

But, thanks to our new friend, Meredith (who also has a child with DS), she has helped me in feeling better about the whole situation.

I just think that this next year is going to be really tough.  A lot of good times and joy but also very tough with lots of tears to be shed.

Here's to hoping when we start PT next week that she will give us some hope and encouragement that all the work we do with Madi is paying off.

Valentine's Day

Taylor in the morning before school......can you say "I'm too cool!"

Taylor at her Valentine's Day Prom at school in the afternoon

Oh no.....she's already dancing with boys!

Taylor's "princess" jewelry daddy gave her for V-Day

The tins I made to put candy in for each of Taylor's classmates

Yummy cookies Taylor and I made with GiGi!  Taylor ate ALL of them!