Eco Fabulous Family

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!