Saturday, May 28, 2011

U2 concert

Okay....I has been a while since I have post.  I have just been crazy busy!  Mark was out of town and it's a struggle to be by myself with the two girlies let alone try to post.

Last weekend we went to the U2 concert!  We had bought the tickets almost 2 years ago.....the concert was supposed to be last summer.  Well, when Bono hurt his back and had to have surgery.....they rescheduled.  The concert was absolutely amazing!!!!!!!

The stage was MASSIVE!!!!!!

The concert was held at Invesco Field.....where the Broncos play football!  There were 60,000 crazy fans there!!!

The Fray opened up for them......

And then the one and only.........U2!!!!

We had such an awesome time!!!

Thursday, May 19, 2011

Big milestones and new friends!

Madi is doing so many things these days!!!  She is holding herself up with her arms in a side sitting position.....Watch the video!

She is rolling over from her back to her front......

She is pushing up on her hands really well!

She is just getting so strong!!!

She is making new friends!  We have met a great couple who also has a daughter with Down syndrome. The girls are the same age......just 3 weeks apart.  We met up with them the other day for the first time.  It was so fun to see the two girls together!  I just KNOW they are going to be friends forever!! :)

They are holding hands!!!

Little Miss Lily!!!  She is such a cutie!!!

These new friends of ours are just great!  They know exactly what we are going through!  It is very comfortable being around them.  We don't have to worry what others are thinking and we don't have to feel ashamed or embarrassed that our child is sticking out her tongue or not doing something that she should.  I look forward to seeing them again!

Madi is very slowly getting over her bronchitis.  Today is day 8 with it.  Today has been the first day that she is back to eating her normal 6-7 oz at every feeding.  She has been more awake and alert instead of just wanting to sleep.  Unfortunately, she still has an icky cough but I think we are at least headed in the right direction.

Sunday, May 15, 2011

This last week was a very busy and hectic week!

As you already know from my last post, Madi's pulmonary hypertension is gone!!!  So, we did the 24 hour O2 challenge.  Look at this little face without a cannula!

It's amazing how different she looks without it on!!!  We don't know the results of the test yet.  I think that she definitely passed for during the daytime hours.  Her saturation levels were around 95% when she was feeding and awake.  It won't surprise me, though, if she fails the night time portion.  I went into her room several times during the night and she was always around 88%.  They want her to be above 90%.  It's not that big of a deal if she needs to be on oxygen at night for awhile.  I just want her to pass the daytime portion.

First time trying solids

I finally got the courage to try solids with Madi for the 1st time.  I don't know why I was so nervous about it.  It's really kind of silly!  I think that it has to do with the fact that so many kiddos with Ds have feeding issues.  I just didn't want to have to stress out about something new.

Her 1st time having rice cereal was pretty much as expected........a mess!!!

She did pretty good with it.  I am anxious for the ST to come again and work with us on the feeding techniques.  She's coming the first week of June.  For now, I am just concentrating on actually getting some food in her mouth and not everywhere else!

Pushing up on hands

Little Madi has decided that she is a strong girl now and likes to push up on her hands with her arms straight!  We have been working with her on this for about 6 weeks and all of a sudden it clicked with her.  Now, she can hold herself up, pushing on her hands for about a minute!

Look at her go!!!!


Taylor and I went shopping for Mark's birthday presents and decided to get all dressed up!  We had a girl's day!!

Pretty shoes!


Taylor got bitten on her cheek this week. read that right......her cheek!  Can you believe it!!  This is the 2nd time this little girl has bitten Taylor.  The first time was on her arm.  I have since learned that Taylor is not the only child she has done this to.  Thankfully, the skin did not break but it left a nasty mark!

You can see the individual teeth marks!!!

Dance Pictures

Taylor is getting ready for her first dance recital in a couple of weeks.  They had class pictures this last week.  All I can say is..............too stinking cute!!!  I cannot wait for her recital to see all these little girlies with their tutus bouncing around!

Eye Doctor

We had Madi's first eye doctor appointment.  We have learned that she is far-sighted (can't see up close). She is right on the border of needing glasses.  They want to recheck her eyes in 6 months to see if they have gotten worse or better.  I guess her vision can improve in the first couple of years of life.

We used to think that she couldn't see us.  She always looked beyond you.  We mentioned this to the doctor and he said that she probably couldn't see us.  Her vision was probably worse and has improved.


Both Madi and Taylor have bronchitis.  Or I guess I should say had.  They are both on antibiotics right now.  Taylor has been dealing with it pretty good.....hasn't really slowed her down.  Madi, on the other hand, has been super sleepy, no appetite and just overall pretty cranky.  :(  Poor little girlies!!!

I had to throw in some cute random pictures in there, too!!

So, as you can see, there has been ALOT of things going on this last week.  Stuff that is both good and bad.  This next week should be a little more slower paced.  Yeah!!!!

Monday, May 9, 2011

Mother's Day and Cardiologist

Happy (late) Mother's Day to all you momma's out there!!!

I had a good Mother's Day this year!  Mark was unfortunately out of town and so was my dad so it was my mom, me and the two girlies for the day!!  We went out for breakfast and then spent the day at the Cheyenne Mtn. Zoo in Colorado Springs.

Taylor was able to pet a baby kangaroo!  

Gigi and Taylor.......Rrrrrrrrr!

Taylor saw a chipmunk and just HAD to lay on the ground to watch it!

This porcupine was just too cool!  I had to take a picture!

A good time was had by all!!!  Both girls asleep in the car!

I truly feel blessed and honored to be the momma for two wonderful, beautiful girls!!  This Mother's Day has meant just a little something extra special this year.  I can't imagine my life without my girls.....exactly how they are.  I wouldn't change a thing!

We received some wonderful news today!!!!!!

We had Madi's cardiologist appt to repeat an EKG and echo on her heart........NO MORE  pulmonary hypertension!  Yeah!!!!  Everything looked great!  Her PDA was closed completely and the leakage between the two upper chambers was gone too!

So, now, the next step is to do a 24 hour oxygen challenge to see if she can get off her oxygen.  They will hook up a pulse-oxymeter to her toe and it will tell what her oxygen saturation levels are at all times.  She has to be above 90% at least 90% of the 24 hours.  I think she will do fine for the day portion.  We had her oxygen off today at the appt and during her feeding there and she was between 92-94%.  I worry about the night time levels.  Last time we did the O2 challenge, she dipped down to the 20's% during the night.  If she does dip down at night but is good during the day, they could set it up so that she only has to have o2 at night.  That wouldn't be so least we wouldn't have to lug the O2 around during the day anymore.

But, more than the oxygen issue, I am just glad that the pulmonary hypertension is gone!!!  I was so worried she would still have it.  The next step would have been to start different drugs to make it better.  I really did not want to have to go down that road.

Miss Madi is such a big girl these days!!  She is sitting in the exerciser........her feet don't touch the floor yet but she enjoys reaching for the toys!

I hope everyone had a wonderful Mother's Day!!

Thursday, May 5, 2011

At my wit's end!!!

Let's just say this......I am at my wit's end!

I am at my wit's end with people that are "afraid" of us because Madi has Down syndrome!

I have been trying to push these feelings aside and give people the benefit of the doubt but I just can't do it anymore.  We have several family members and friends that have given us the cold shoulder since Madi was diagnosed with Ds.  They have not even sent a text, email or card saying "Congratulations on the birth of your daughter."  I know that this is my 2nd child so lots of people don't acknowledge it like the first one.     And I don't expect that.  But, I guess I would expect a simple Congrats email, text or something.  Instead, these people act like we have the plague.

We also have the people that have even admitted that they are "afraid" to talk to us and be around us.  Okay......what is there to be afraid of?  Down syndrome is NOT contagious.  My child does not have some major physical disfigurement that people would tend to stare and gawk at.  And you know what......even if she did, she's not a scary child.  If anything, her smile and love is infectious!  I feel so honored to be her mommy.

I have been told that maybe people are afraid to say something that might offend me.  I totally understand and get that.  But, I am not an easily offended person.  I KNOW that people are going to say some things that probably don't come across the right way.  But, I also know that these people don't mean it in the wrong way.  And they aren't intentionally trying to say something hurtful.

I have also been told that some people just don't know what to say.  Well.......there is nothing to say!  Usually the 1st response is "I'm sorry" and to be honest with you, that seemed appropriate when it was the first couple of weeks.  But now, I am not sorry.  I wouldn't change anything.  So, really, there is nothing to say.  If you feel like you need to say something,  say "I am here for you if you need anything."  But, completely ignoring us and treating us like the plague does much more damage than saying the "wrong thing".

I try and put myself in other people's shoes and think about how they are feeling.  Before I had Madi, I knew nothing about Ds and nothing about people with needs, in general.  So, yes, if I had a friend with a child suddenly diagnosed with Ds, I probably would not have known what to say.  But, I would have been there for them and listened if they ever needed to vent or cry.  And I would have let them know that I am here for them whenever they needed something.  That is what "true friends" and "family" do.  But, I guess that's what I am learning.  Who my true friends and family really are.

I thought I already went through this when I went through breast cancer.  I definitely got rid of some people in my life.  But, I guess I get to do it again.  The very unfortunate thing is that these people are going to miss out on getting to know one of the most beautiful souls in the world.  Madi is truly a blessing from God and I only wish that everyone would get to have the pleasure of knowing her.

I probably should not have posted this on my blog......but actually, the people that I am talking about, are surely NOT reading my blog.  Remember........they are "afraid"........

Wednesday, May 4, 2011

Wordless Wednesday

Here are some great pictures from the last week or so!!!

Can you say "I am a ham!!"

Picture day at school

Yes, I know, the flower is as big as her head.....but how can you NOT love that hat!!!

We got out Taylor's old exerciser for Madi to start playing in.......I guess Taylor decided she is not ready to give it up!

Sleeping so soundly......very sweet!

Planting peas in Gigi's garden