Eco Fabulous Family

On this day 1 year ago I finally got to meet you.  I will not lie, I was terrified.  I was so scared because you have Down syndrome.  I had done autism, hell I did that twice but for some reason Down syndrome scared me.  A lot of it was worries about your health and a lot of it was worries about the unknown.  Well I have learned more in the last year from you than I could ever have imagined!  Here are some of the things I have learned:

I will do anything (anything!) to hear your laugh.

Your brothers have so much love to give and you have them wrapped around your finger.

Your Dad is an amazing father (not that I didn’t know that already!).

The sun can be inside a person and sparkle out their eyes.

Your cuddles can cure even the worst day.

You are mighty and you are a fighter.

You know what you want and how to get it.

I hope I can be more like you when I grow up!

You will be able to keep up with your brothers.

Your smiles can change everything.

A diagnosis is just that and does not define the person.

Most of all you amaze me.  Everyday I look at you and a feel so lucky to be your Mom.  Thank you for picking me.  I only hope that I can do you justice.

Happy 1st Birthday baby!

I work from home now.  Well, I am not sure what you call what I do.

When Bug was born in 2003 I was walking that typical modern day Mom line.  I returned to work when he was 8 weeks old.  I worked for an aerospace company as a Program Manager and 60 hour weeks were the norm.  It was rough.  To the delight of my boss I pumped every two hours and raced to the day care center at lunch everyday to nurse.

When Peanut was born in 2006 I had the same job.  I got admitted to the hospital at 32 weeks and worked everyday from my hospital bed.  I had work delivered and picked up every day.  After Peanut was born I managed to stretch my leave to 4 months and then went back 3 days a week using vacation hours I had saved for years.  To my boss’s delight again I pumped.

When Peanut was 3 I knew things had to change.  So I bought an online business and decided to try to make it work.  I worked days in aerospace and nights on my store that sells eco-friendly products for babies and moms.  I LOVED it and am passionate about it.  In the spring of 2010 I could feel things changing at my day job and finally made the jump to WAHM in June 2010.  My online store was not enough so I did (an do) independent contract work for different companies.

In 2013 our family was completed with Froggie.  I was working while being prepped for my C-section. I took about 8 hours off.

Now I have 4 jobs.  My online business plus 3 other jobs.  I work all. the. time.  And I never work.  Yep, you read that right.  I am constantly working…or not. Maybe we could say that I work at trying to work.  I have 3 special needs kids so that means 3 sets of therapies. Some times more therapy than others.  A typical day starts with me taking Bug and Peanut to school.  I rush home and grab a bit to eat and try to move Froggie and my computer to my office where I will try to get an hour or two of work in before Froggie’s therapy. Sometimes this happens, and sometimes it doesn’t.  It depends on Froggie’s mood.  After therapy I rush out for appointments, errands and to pick up kids.  Then home and while we do homework I am trying to get some work done.  Every time my bum hits the chair a kid needs something or a kid hit someone :).  At the end of the day I realize that I spent more time running around doing errands and breaking up fights then I did working.

The end of my day usually ends up with me on the bed working while the kids sleep, hopefully.  Tomorrow it will start all over again.

Thank God! Yes, thank God.  I am so grateful for my messed up crazy life.  Somehow I manage to get enough work done to fool everyone and I get to be there to break up fights.  I get to nurse Froggie on demand.  I get to yell at Bug about his iPad. I get to have Peanut sit on my lap. When I think back to my Program Manager days and my 60 hour weeks I am so incredibly grateful that I am home.  Even if this doesn’t last much longer, I cherish the days that I get tell Peanut to GET OFF THE BABY for the 100th time.

Not to be cliché but before I know it there will be no more babies.  The house will be quiet because they will all be off doing their own things.  Then what will I do?

Bug, Peanut, Froggie and the cousin!

My Diagnosis Story – Down syndrome

Someone recently asked me to tell our diagnosis story.  I thought this was interesting.  I had heard of birth stories but I had never heard of a diagnosis story.  Even when Bug was diagnosed with autism no one asked for the story.

My story started long before we were officially told.

When Chris and I started our journey to create a family we discussed what would happen if we found out we were pregnant with a child with Down syndrome (Ds).  Yes, we actually had that conversation 10 years before Froggie was born.  We had it several times.  We always said that if we were to find out we were going to have a child with Ds we would have the baby.  We would figure it out.  We would deal with it.  Little did we know we would be blessed with Patrick.

I got pregnant with Patrick on April 30th, 2012.  I really am that neurotic that I can tell you the date each of my children were conceived.  Yes, I am a bit crazy!

By mid-June I was having dreams of a little boy with Ds.  I know you all will think I am crazy, except for the people who I told.    By July I was convinced I was having a baby with Down syndrome. I called several friends and told them the baby had Ds, they thought I was being paranoid.  I emailed and called a few Moms I knew who had children with Ds and told them I was having a baby with Ds.  They thought I was a bit strange (and they were right) since I did not have any diagnostic tests done yet.  At the beginning of August we received blood work showing we had a 1 in 6 chance of having a baby with Ds.  I was scared, no terrified.  The doctor offered an amino to confirm.  After much discussion we decided to have the amino.  My doctor has done several aminos a day for years and the risk of miscarriage was low with him.  I am a Type A and needed to know so I could plan and prepare.  Besides, the state of California was going to pay for it!  Wow!

Um, I was a bit naïve.  I did not realize why they pay for it.  I even asked my doctor later on in my pregnancy and he said to follow the money. He was right.  What is cheaper for the state?

The amino was performed on Aug 15, 2012 and the results came in on Aug. 27, 2012.  It was about 10:00 am and I was home with Chris.  Bug and Peanut were at school.  The phone rang and it was my doctors nurse.  She asked where I was and I told her at home and she said “I’m sorry, the baby does have Down syndrome”.  I told her thank you and hung up.  I cried, hard.  Chris held me and we grieved. It was horrible. Since I had already been researching I knew there could be heart problems.  I called her back and asked if the baby’s heart was ok.  She said as far as she knew it was.  That afternoon I took Bug out of school early to give him the news.  I thought he would understand to some degree and wanted to tell him separate from Peanut.  Peanut was only 5 and I was sure would not understand.  Bug didn’t really get it.  Later that day I told Peanut.  He said, “that’s ok, my friend Maddy has Ds”.  Then he said, “it is hard to understand her, will I understand my brother?”.

Then things got really interesting.  Our next appointment we had to see the genetic counselor otherwise the state would not pay the bill for the amino.  I was still very naïve about the state’s motives.  She then presented my options.  I quickly told her we would not have an abortion or place the baby up for adoption.  She continued to talk about abortions and when the cut off date is to have one.  I again told her I did not want to hear it. Chris and I had discussed this and were comfortable with our decision.  After a couple minutes of this I told her F*&% off and walked out.  Chris followed me. I have a knack for putting him in uncomfortable situations.  Later in the pregnancy I complained to my doctor about the genetic counselor and he told me that she complained about me too.  She told him she “was unable to work with that patient”.

I was terrified.  I knew nothing about “Downs” (politically incorrect terminology in the US).  I was fortunate that Peanut goes to an inclusion school and I was quickly and lovingly welcomed into the best community I never knew I wanted to be a part of.  These Moms and Dads hugged me, welcomed me, gave me information, pointed me in the right direction and tried to calm my nerves.

I don’t know what I would have done without Nancy, Christine, Michelle, Jennifer and several others.  After the birth even more Moms were added to my circle.  Today, 6 months after Patrick’s birth I am blessed with a circle of Moms who get it.  Who will be there for me when I need them.  I need to learn to “use” them more.

Getting a prenatal diagnosis is so scary. I read everything I could.  I called people, emailed people and prayed.  For some reason it was very important to me to tell our family and friends.  I wanted everyone to know so there was no awkwardness after the baby was born.

One friend, with a little girl with Ds, told me to relax.  She said at the end of the day you are having a BABY.  This baby will be just like your other babies.  He will eat, sleep and poop and that I knew what to do with a baby.  That changed things for me.  That one simple sentence (or two?) gave me something to hang onto.  It really made a difference.

Froggie is the most amazing, sweet, cuddly and special child.  I truly am blessed to be his mother.  He breaks stereotypes everyday and makes me proud.  I honestly would be thrilled to have another with Down syndrome.  I am not just saying that.  This is an amazing journey and our lives are better for it.

Not the best picture but there are so few of me with him…this is all I could find!

Chris, Bug and Peanut went camping this weekend.  Froggie and I had the house to ourselves all weekend. So we had a wild party and junk food.  Well, only part of that is true.

I took this opportunity to try to get control over the massive amount of crap that has accumulated in the boys bedroom.  It was bad.  I mean bad.  Where did all that stuff come from?

Here are a couple before pictures:

Peanut’s Room – Before

Bug’s Room – Before

They really did have cardboard boxes in there because there was no where else to put all the junk.  After working all weekend. This is what it looks like now.

Peanut’s Room – After

Bug’s Room – After

There is still work to be done but we can walk in there now without risking a trip to the ER.

It is so important for them to have a place to go that is their own.  Especially when they need to calm themselves or take a break.  It is not easy to calm down, take a break or even just have fun in a room like that.

So I am publically promising to make sure they stay this way.  Anything not put away by bedtime is mine! I will remind them for the next few nights.  So the hard part is just beginning.  I need to remember to follow through!

There will be an important lesson here.  Sometime in the next week or two we will all take a trip to donate much of that clutter. All that junk which was not valued by them (clearly) will certainly mean something to someone else.

What changes did you make to get control of the stuff in your life?

Here is Froggie’s birth announcement.

This will be boring to most but it will answer many of the questions we are getting!

Since I am not a doctor I may not explain these things perfectly so feel free to use the links if you are so inclined.

When you have a child with Down syndrome the first thing other parents with kids with Down syndrome say is “How is his heart”. The reason for this is because almost half of all children born with Ds have a congenital heart defect.

Patrick’s heart is doing great! Patrick was born with a hole in the upper chamber of the heart called Patent Foramen Ovale (PFO), a hole in the part of the heart called Patent Ductus Arteriosis (PDA) and a leaky aortic valve. At our last appointment with the cardiologist these all closed and he has a slight amount of Peripheral Pulmonary Stenosis (PPS). You can read more about it HERE if you are interested but his cardiologist thinks he will outgrow it by 6 months old.

The second question is often about hypotonia or low muscle tone.  More HERE. About 90% of children with Ds are born with low muscle tone and usually start therapy right away to help them work on this.  Patrick started OT 1 hour a week at 6 weeks old.  On April 1 we are going to 2 hours a week.  One hour to work on his tone and the other hour to start working on cognitive skills or infant stimulation.

The rest of these are not necessarily because of the Ds.  They could be and they could not be.  Clear as mud, right?

He has something with eyes called Fovea Hypoplasia.  You can read more HERE.  It is basically part of the eye that is under developed and he may not have perfect vision.  This can not be corrected by glasses.  This is a wait and see type of problem.

He has Laryngomalacia. This is when a part of the larynx is soft.  It causes him to sound congested and squeak at times. More HERE. Since he also has a tiny bit of GERD  he is on medication to prevent stomach acid from further aggravating the larynx.  Hopefully he will outgrow it.

He also has a variant of hypospadias. It is a birth defect of the urethra and will have to be operated on when he is about 6 months old.  It makes diapering a challenge   More HERE. Additionally there is a small amount of hydronephrosis. More HERE. Hydronephrosis is reflux in the tube between the bladder and kidney.  We will watch and see if he outgrows this.  Peanut also had hydronephrosis and outgrew it at about a 1 year old.

Finally when he was 6 weeks old he was hospitalized for 2 days.  He caught RSV.  It was very scary and can effect his lungs in the future. More on RSV HERE 

That is it for now.  Hopefully nothing else will pop up but we are confident we will be able to deal with whatever comes our way.

I originally started this blog because I have a small business and all the experts tell you that you need a blog to effectively market your business. It is a must. So is Facebook, Twitter, Pinterest, Instagram and on and on and on. The problem is a small business only has so many resources to do all these things. Some simply don’t get done.

This blog is call Eco Fabulous Family and I have one of those. We are very eco-friendly and fabulous, of course! So it will now be about MY eco fabulous family and maybe cloth diapers once in awhile!

I don’t expect this blog to have many followers or make money but it will be a nice way for family and friends to keep updated on our lives here! Especially since our newest addition, Froggie, has lots of extras that came with him. An extra chromosome, extra doctor appointments, extra diapers and extra smiles!

When I was pregnant with Froggie many of our family and friends reacted negatively. He would be disabled. He would ruin our lives. He would never potty train. He would be sick all the time. He would never walk.

Baby showers never happened for one reason or another and no flowers or cards arrived. It was clear that many people in our lives did not know how to react. When Peanut and Bug were born we were lavished with congratulations and good wishes. When Froggie was born we could hear the crickets. There were a couple of family members brave enough to say congratulations and we appreciate that, more than you will ever know. For those that were nervous or scared to say congrats, I get it. I really do. It is hard to know what to say. I always said I wanted a healthy baby and then I got Froggie. This is not about blame. This is about helping those in our lives accept and love Froggie, Peanut and Bug as much as their Dad and I do.

Froggie is the best thing that could have happened to us. He is a voracious nurser, a cuddler, a lovebug (or frog?) and is smashing stereotypes every single day. I am truly honored to be his Mama and more proud of him than words can say.

So, family and friends, if an extra chromosome freaked you out (or not) please check back here once in awhile. I will make sure to share the good and the bad of life with three special needs kids. We have lots of extras to share!