Our New New Normal

(Little Mr. Wonderful)

warning: serious post

For the past several weeks I've wanted to write about what we've been going through here, but we've been in survival mode and I haven't really had the time, the energy, or known what to say. Also, I knew I would have to backtrack and first talk about our "New Normal" before moving on to the "New New Normal". Intrigued?

So, this is the short version, but here goes.....

In October when our third sweet baby was born, we were surprised to find out that he had an extra chromosome - an extra 21st chromosome to be exact. Nathan has Down Syndrome. He is still the sweet baby we were expecting, just different. Obviously this has taken some getting used to.

That was our New Normal.

In mid-February we realized that something was wrong with our sweet baby. Then overnight we realized that something was very wrong. Nathan was having seizures. It turns out that he is having a very specific kind of seizure called infantile spasms. If you look it up, it has a very depressing outcome for most children. Although, children with Down Syndrome tend to have a much better longterm prognosis. Strange, I know. I was wondering if I should be thankful for that extra chromosome he has until his neurologist said that it's probably the Down Syndrome that is causing the seizures.

So now we are going down the list of drugs that have been used to stop IS (infantile spasms), hoping one or a combination of them will stop these terrible seizures. Lots of measuring medications and keeping up with which meds go with which feedings, counting seizures, recording observations, etc. Lots of prayer.

This is our New New Normal.

Craziness!

Thankfully my mother (who deserves her own separate post and several "odes") has been helping us tremendously. Basically, I take care of the baby and she does everything else. Except for when she helps with the baby too. Wow. I know. She's awesome.

Now you're in the know. :) I'll try to keep the blog a little more updated, but if I don't do too well with it - you know why. Please pray for us!