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.

Thursday, May 2, 2013

A long overdue update!

Whoops.  Can't believe I haven't blogged in weeks.

Well, actually, I can.  I seem to need about 3 more hours in each day currently.  So it really isn't that surprising that I can't find moments of clarity and in front of the computer at the same time.

Where have I been, you may ask.

House planning.

It is such a cool process, but it also takes a nice portion of time to get this right. I cannot wait for it all to be done - but this journey will take a bit more time.  We are hoping to move by the end of the year.  (what an awesome Christmas gift that would be!)

So, I will try to bring everyone up to speed.

The latest on Owen...
The little squirt is really starting to show his personality.  We get to see smiles often now and it is truly one of the greatest things ever!  I have recently found his tickle spot and have heard a few giggles too.  Nothing sweeter sounding!  He has rolled over from his back to his belly and really scoots in circles on the floor.  In the morning, he is never in the same spot in his crib!

Medically, we have moved forward with getting ready for hearing aides.  He had impressions made last week and they will be ready next month.  We believe this will be a temporary fix as fluid in his ears seem to be the issue.  But, we cannot do anything about the fluid until his ear canals grow.  Hopefully it will only take a few months. And, in the meantime, he will have the help he needs to hear loud and clear.   Both sides improved at the last ABR test, and the left side seems to be the side that needs more support.  We decided, though, to get an aide for each ear for now.

And, although it has been a loooonnngg week here, we are feeling validated in our decision. Owen had a few very fussy days and nights.  Sleep was hard to come by unless he was held.  Unfortunately I came down with strep and felt terrible too.  When I took him in, our pediatrician believed he had an ear infection, based on his symptoms. The crummy part is that his inner ear structures are not visible, so we had to use the other symptoms. Sure enough, after a day of the antibiotics, he was back to himself.  Thank goodness! Next time it comes up, we will be at the doctor much sooner!

So here is the crazy part....we had a sleep study scheduled for last week and cancelled it since he wasn't feeling well.  We were doing the sleep study because he is a terribly loud sleeper and woke himself gasping several times a night.  Scary.  His pulse ox levels were always ok, so I wasn't super worried, but it sure sounded much different that our other kids sleeping.  The crazy part--once we started the antibiotics for his ears, he has slept like a baby!  He is back to sleeping through the night and it is so quiet! 

We are convinced his loud sleeping is related to his ear fluid, so we are trying to decide whether or not to continue on with the sleep study next week.  Time will tell...

He returned from a week's vacation with grandma and grandpa in great spirits.  A little special TLC and he is over his cold too.  Potty training is going pretty well and hoping we can get it done before the summer starts.  He is starting to use more words and his favorites are: uh oh (in perfect tone), no and alright.  So grateful for the nicer weather and having play time outside--he missed it!

Nearing the end of 1st grade.  Wow.  How is that possible?  Currently he is front-toothless and cracking us up everyday.  He truly is one funny little guy.  I have to find a good balance between laughing with him and remembering to not encourage it too much.  (You know how interesting a boy's sense of humor can be!) He and Kate participated in a regional speech meet last month and both earned Superior awards.  So proud!

Our baby turned 8 last month and will be a third grader next year.  Double wow.  THAT seems even less possible somehow.   She is surely growing up fast and acting more and more like a young lady. The speech meet is a great example....last year she cried at school because she was so nervous.  This year, she went on to the regional meet.  Her confidence is building and it is so nice to see.  That girl is going to make a big difference in the world someday.

The school year is drawing to a close and it is hard for me to believe that it has been nearly 2 years since I left my job at school to start this adventure as a stay at home mom.  I never knew what all this would entail, but I would not change it for the world!  Reminds me of a quote from one of my buddies:

"I wouldn't change my kids for the world, but I would change the world for my kids."

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