Our journey through a prenatal Trisomy 21 (Down syndrome) diagnosis and beyond

I wish it were possible to recognize at the beginning of our life’s story what an incredible journey we are truly on. If so, I would have sat down years ago and begun documenting all the ordinary and extraordinary events in this amazing life I have been blessed with. Sometimes, though, it may take just one more thing to open your eyes into the beauty of the life you have led and causes you to pause and truly count the blessings that are now so many they will never be enumerated.

If you are just joining us, please go back to September 2012 to get caught up.

Tuesday, January 8, 2013

Just eating bon bons all day and watching the soaps


Someone asked the other day (I think jokingly) why I hadn't been blogging as much.

Well, it is just these little people that keep getting in the way.  :)

While it is WONDERFUL being home, I haven't had the "free" time I did at the hospital.  Pesky things like cleaning and laundry keep me busy during my "free" time now.  And it is great.  Really.

We are on day 2 of me by myself with the kids since the grandparents and dad have left us during the day. It is actually going really well.  Except my little boys cannot coordinate their naps yet, how dare they?!

I did get a 15 minutes cat nap yesterday, so that was heavenly.  And B has been AWESOME at night and feeding Owen while I pump, therefore requiring me to be alert only half the time I would have to be.  Love that man.

O is doing great!  Yesterday (I think it was, at least) he was kind of lower in his SATs all day and night. We (I) was worried, but last night and today he is doing fabulous.  It occurred to me about 3 am the night before that we had gotten a Rock n Play sleeper and it was still tucked away.  Those are miracle-workers for our babies--they sleep like a log in them!  So 2 nights of good sleep, in baby increments of course, and I feel like a new woman.

Now, if only I could get a shower...

I am so grateful to those who are helping us out right now.  Friends are driving the kids to and from school this week so I do not have to deal with the oxygen and pulse ox machines in the van.  That has been a wonderful gift this week.  Many others have offered support and help and we are really appreciative for that.  (they may live to regret it though, when I call for help!)

What is in store next??

We have our 2 week check this week with the pediatrician.  Not thinking much will come out of that as long as he is gaining weight and such.  Then next week we meet with the pulmonologist to discuss the oxygen.  Anxious for that one; but would much rather that than an appointment with the cardiologist! 

Here is how I found Mr. O yesterday... Clearly he is a big fan of the nasal cannula!

And not to be outdone, Colton has already learned that while I am feeding baby, he has a bit more freedom.  From his pants, at least.

And not to leave the other lovies out.  Here are Kate and Andy holding Mr. O! Kate is obviously impressed that I am taking more pictures! And this is the first time Andy is holding O.

Well, that is the newest information from here.  And since this post took me nearly all day to get together, please assume that no news is good news :) 

Now faith is being sure of what we hope for and certain of what we do not see.   ~ Hebrews 11:1

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