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.