Paranoid???

These days I feel like I'm paranoid.......I keep waiting for our next dilemma!  There are so many different medical things that people with Down syndrome are prone to having and I am constantly on the lookout for all of them.  Actually, I am on the lookout right now.  I kind of went through this about a month ago but seemed to move past it but now I am doing it again.  I think it's because Madi's reflux seems to be getting bad again.  Or at least I think it's her reflux.  I don't know.  And she's constipated for a couple of days but then goes a bunch the next few days.  And the way she acts when she's constipated is the same as when her reflux is bothering her.  It's so frustrating!

Madi also seems to be so sensitive.  It's my understanding that kids with Ds can have a lot of sensory issues.  I think she does.  Or at least she seems to startle very easy (the Moro reflex).  I know this is common in all new babies but she is 3 months old and should be growing out of it.  When you look up information about the Moro reflex, it says that if they still have it, it probably isn't the Moro reflex, it's infantile spasms (which, kids with Ds are prone to).  Then when you look up that, well......let's just say, don't look up that!

Thank god we have the Down syndrome clinic here with the wonderful experts.  I have another appt. with them in a few weeks and I have a long list of questions.  Madi's regular pediatrician doesn't have a whole lot of experience with kids with Ds and I feel like he just blows me off and thinks I am paranoid.  I guess this is the beginning of me having to learn to be Madi's advocate.

My thoughts are just kind of erratic this morning.  I am feeling overwhelmed.  The weather doesn't help it.  I woke up to low overcast and gloomy.  I am very much a person that is affected by the weather and this doesn't help.  I just have to keep in mind that this weekend it is supposed to be in the 70's!!  Hopefully we will be able to get outside and enjoy the fresh air!!

Wordless Wednesday Again

I changed out her oxygen pads and cannula......just had to take some pictures.  She looks like a completely different baby without the silly oxygen tubes.  Can't wait to be done with that!!!

World Down syndrome Day 2011

Tomorrow is World Down syndrome Day!!

Someone else wrote on another blog that I follow........"I never knew that I wanted a child with Down syndrome until I had one."  When I first read this, it was in the beginning and I was new to this whole thing.  I remember thinking......what is that person talking about?  Are they crazy?  But, I can honestly say that I get it now.  I wouldn't change a thing about Madi.  Of course, I don't want her to have to struggle in life and I definitely don't want some of the medical challenges that seem to pop up with children with Ds.  But, I wouldn't change the fact that she has Down syndrome.  She is such a blessing in our lives and I truly believe that she is here to teach us something.  I know for me, she is going to teach me patience.  :)

This is not to say that we are not going to have our tough times.  I still have my bad days......just look back a couple of posts.  But, that doesn't change the fact that I wouldn't change Madi.  She brings such joy to my life and I feel truly connected with her.  I feel like she already knows me, inside and out.

Some people have asked how I have gotten so far with my attitude and acceptance of everything that has been given to us........my inspiration has been from another momma that has a child with Ds.  She is a photographer and she blogs about her family.  Her name and blog is Kelle Hampton.  She is such a positive person and has really been the reason I have gotten through some of my dark days.  First off, her photos are gorgeous!  At the very beginning of Madi's diagnosis, I couldn't even look at a picture of a child with Ds without being VERY upset.  But once I found her blog and starting reading it and seeing the pictures of other kiddos with Ds, I discovered just how beautiful and absolutely perfect they are.  I really don't know how I would have come this far if I hadn't come across her website.  And since then, I have fell in love with a whole bunch of other momma's kiddos with Ds from their blogs.

I chose to start this blog for several reasons.  First off.....it is very therapeutic for me.  For some reason, just writing some of my feelings down and throwing it out to the world seems to help.

Second.....I wanted a way to be able to communicate to all my friends and family about how we are doing and what's new with Madi.  I am just not physically able to call everyone to let them know what's going on.  And when I do talk to people, I might be having a good day.  I want people to know the dark days that I have too.

And third.....I want to help educate others about Down syndrome.  I knew absolutely nothing until December 28th, 2010.  I had never even really encountered anyone with Ds before.  And since then.....well, let's just say that the flood of information has been like a fire hose being sprayed at me.  I have had to learn real fast!  Yes, there are some scary medical things that these precious souls may have to face.  But, the joy and beauty they bring to your life is immense!

So, in honor of World Down syndrome Day......I hope that this blog will help just one person to have a different opinion of people with Down syndrome.

Happy St. Patrick's Day!

Happy St. Patrick's Day!!  To celebrate in true green fashion......my mom (Gigi), Taylor, Madi and I painted our toenails green the other day and made shamrock sugar cookies!

Taylor loves making cookies!  

Gigi and Taylor

Look at our pretty toes!!  Taylor even had her fingernails green.

It's really hard to paint the toes of a squirming baby......it was the best I could do!

It was a lot of fun!  Today I was sitting at Taylor's dance class and was thinking about how I used to always look forward to St. Patty's Day because I always went out with friends and consumed WAY too much green beer.  Now, I paint my toenails green and make cookies.  It's just funny how your life changes once you have kids......how your priorities change.  I wouldn't trade it for the world!  I absolutely adore my little girls and I can't imagine my life without them.

I have had quite a few moments lately where I just look at either Taylor or Madi and I am overwhelmed with my love for them.  I actually think that my heart stops because I am so engulfed in the love we have for each other.  I had those moments from time to time before I had Madi but to be honest with you, I think I was too busy with life.  Not that we aren't busy now......we couldn't get any busier.....but I don't think that I stopped to "smell the roses".

Everyone that knows me knows that I am not a patient person and I am always go-go-go.  But, I am being "forced" to accept that things aren't always going to go as I want and in the timeframe that I desire.    And I am saying "forced" because some days I have a really hard time with it.  I feel like I am getting better at accepting that Madi is going to do things on her own timeline but boy, some days it just kills me inside.  Just because I accept it, doesn't mean I have to like it.  Madi is getting better and stronger every day but I am having a hard time accepting that the average age for holding their head up consistently for long periods of time is 6 months.  6 months?!?!?!  Taylor was crawling at 6 months!  I know, I know......I shouldn't and CAN"T compare but WOW!!!  6 months!  Now, granted, kiddos do it earlier too and I am hoping that Madi will be one of those kids.

This is where I have been the last couple of days......a series of ups and downs.  I think it doesn't help that Madi had a horrible PT session on Monday.  So, I didn't get my usual burst of confidence that I usually get and to be honest with you, I need it.  I find that right after a PT session, I am feeling confident with Madi and the exercises I am doing with her but by the weekend, I am starting to go downhill again and doubt what I am doing with her and feel like she is not progressing.  So, I NEED those good PT sessions......for my sanity!

Anyways......here are a couple of super cute pictures of the girls today to celebrate St. Patrick's Day!!!

Spring is in the air!

Today was a wonderful spring day!  Or at least I like to think that it is the beginning of spring.  It was 60* outside and we went to the park as a family!  And it was great!!

It was Madi's 1st time to the local park.......I'm so anxious for many more times to come!  To be honest with you, it was one of the few times that Madi has been out of the house, for something other than a doctor's appt.  I have been so fearful of her getting sick, especially this time of year.  So, we tend to stay at home.  And it is a pain to bring the oxygen around.  I was going to go to the grocery store with her the other day but after I started thinking about "Where am I going to put her oxygen.....in the cart or carry over my shoulder?"  Umm......yeah......I think I will just go by myself when Mark gets home.

Okay....back to the wonderful day at the park!!!!  It just felt sooo good to be outside!  The fresh air did us all some good!  We had a good ole' fashioned picnic with sandwiches and even the ice cream truck swung by the park, which Taylor had to have, of course.  Can I just say how much I LOVE that we have an ice cream truck that comes around regularly!  Taylor definitely recognizes the sound of the music coming from it and gets crazy excited!!  To me, that is the essence of being a kid!  I want our girls to have memories of running to the ice cream truck in the summer time and getting giddy over ice cream.  There is nothing more pure and childlike than times like that!

Next week the weather is supposed to be in the high 60's and low 70's......hoping to make another park date with the girls!!!

Eating cheddar bunnies.....patiently awaiting going to the park

Madi wearing her sweater and hat her great aunt Sue made for her

Teasing

So, yesterday I recorded Dr. Phil and watched it in the evening.....it was all about young girls and teasing.  I was absolutely shocked to watch these 9 and 11 year old girls teasing, bullying and just being down right MEAN!  I am soooo fearful for my girls to grow up, and the thought of them being teased just sends me right over the edge!  I know it is going to happen because everyone gets teased at some point in their life for something but I just want to protect my little angels.

Taylor is soooo ultra sensitive.  Her feelings get hurt very easy.  Just this morning, I took her to her new class at school (she is officially in the preschool class....at 2 1/2!!), and when I was getting her settled playing with some older kids, the only thing I could think about was "Oh, I hope they are nice to her and let her play with them."  I was talking to the teacher and she said that the cliques and snottiness from girls starts even in the kindergarten class.  Kindergarten????  What do you have to be snotty about at that age?

And then I think about someone being mean and poking fun of Madi........let me tell you "Mama Bear" will be out in FULL force!!!  I am just so scared for her.  I want people to accept her and love her.  It frightens me to think about some snots bullying her and, god forbid, if they call her the "r" word.  I have to stop thinking about it because it gets me entirely WAY too worked up.

I don't know.  I guess all I can do is focus on what I teach my girls and hope that they treat everyone the same.  It's just a crazy world out there, though!  If this kind of stuff is starting in kindergarten class these days, it makes me fearful of what society is going to be like in 20 years.

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!