Sunday, February 27, 2011

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!!

Saturday, February 26, 2011

Day of Pictures

Nothing much has gone on the past couple of 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!

Wednesday, February 23, 2011

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!

Saturday, February 19, 2011

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!?!?

Friday, February 18, 2011

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. is starting to sound like all I am talking about is what I need.  And it's not about'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.

Monday, February 14, 2011

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!