Saturday, June 19, 2010

Delivering the bad news

When I made the appointment a few months ahead of time I requested that it be my doctor I see after the ultrasound. I hadn't seen him yet during this pregnancy and wanted him to be the one to "deliver the bad news".

I say "deliver the bad news" because I think being a parent of a child with special needs, you are always waiting for the other shoe to drop. Also, things have never been routine or easy for us. Let's just say the Lord has given us many, many challenges that most people don't have to face. We, of course, overcome them. That doesn't make these challenges any easier when we are faced with them. It also doesn't make them any easier to understand.

After Cameron's birth I looked at him and assumed my precious baby boy was healthy (other than the heart defect they mentioned to me at an 8 month ultrasound). Afterall, no one had said anything differently and this was my first baby so I didn't have any expectations.

Although I love surprises, which is why we didn't find out the sex of the baby prenatally, the surprise that came two hours after Cameron's birth wasn't one I enjoyed as much as hearing the words "it's a boy".

We learned two hours after Cameron's birth that he lkely had Down syndrome. We were shocked and saddened.

On to my second pregnancy. After the 20 week ultrasound we were told my doctor had been called out for a delivery, but we could wait. I told Dave to go back to work instead of waiting. I eventually gave up waiting and said I would see whatever doctor was available.

In the room a doctor that I had never met before came in smelling like smoke. He told me in a very routine fashion that they had seen a "cystic hygroma" during the ultrasound, he wanted me to go to a perinatologist, and sent me on my way. My mind was spinning as I had no idea what this meant. I went back to work and googled it. This is where the shock and sadness came.

After weekly ultrasounds at the perinatologists office, a lot of agony, and countless tears, I eventually gave it all up to God and had faith. Typing this is easy, doing it was not. I made the right choice, my precious baby (another boy) was miraculously born completely healthy.

Here we are again. The 20 week ultrasound. This time we would find out the sex of the baby, we were hoping for a girl, but more importantly praying that the baby was healthy.

The good news - IT'S A GIRL!

After the ultrasound the sonographer went to see if my doctor was ready to see me. He was called out for a delivery, but we could wait (dejavu). I noticed that there was a lot of concentration on the baby's heart and wanted to wait to see my doctor to "deliver the bad news".

We waited an hour and a half. I finally gave in and said I would see another doctor.

We were told the doctor would be right in. We waited another 20 minutes. I told Dave that nobody wants to come in and "deliver the bad news".

The bad news - the baby has bilateral chorid plexus cysts, a VSD (ventricular septal defect), and EFLV (elevated flow left ventrical).

These things alone would likely mean nothing but together it is likely a genetic defect, more likely Trisomy 18 or 21.

More shock and saddness.

Monday, June 7, 2010

Discipline Help

I totally failed on my weak attempt to start writing in my blog again, sorry. I just don't know how you moms of little ones have the time. My boys don't let me leave their sight to do anything (not even go to the bathroom). Oh well.

I am writing today because I need some advice and know that you all will be able to help.

Cameron (well both boys actually) have recently been upgraded from their cribs to toddler beds. The transition went amazingly well. The "problem" is Cameron is waking up earlier than he used to. He still gets 10 hours of sleep at night and takes a 2 hour nap daily.

However, he has had bad reports coming home from school lately. The only thing that I can think of is that he is tired and therefore, acting out. He thinks doing things that are naughty are quite funny.

I must admit that I have been slacking a little bit in my consistent discipline with him as well and am hoping to be a little more routine with it.

My question is this, how do those of you who have 3 or 4 year olds with Down syndrome discipline? Does it work? I most often feel that Cameron doesn't get it and sometimes think, why bother trying.