Bubbles do burst

I am aware that I have 3 children, but for right now I'm going to do a quick update on our past year with Luke.

For quite a while when people asked how everything was going with Luke I described it like this:

"It feels like we are on the outside of the bubble of Down Syndrome, looking in, just riding along."

Shortly after my last post (almost a year ago) that bubble burst.  Luke was sick for about 4 months.  It started in mid-November with night fevers.  By the end of December he had pneumonia that knocked him down for a few weeks.  We had a good week right around his 2nd birthday and then he started getting sick again.  Near the beginning of February we ended up sending him in an ambulance to a hospital where he and I stayed for 8 days.  Initially the doctors thought it was the pneumonia again, but it turned out to be RSV.  Soon after we came home he developed another infection that also seemed like pneumonia, but turned out to be post-RSV inflamation.  By the middle of March we had gotten through the worst of it.

It felt like a miracle that Luke started walking independently on March 21st, which just so happens to be World Down Syndrome Day!  You can't make this stuff up.  I couldn't believe that after so many months of sickness he had continued to make progress.

Luke continues to have respiratory issues.  Right now he is being treated for pneumonia which we had tried to get rid of just 3 weeks ago.  It's hard to continually say that "Luke is sick."  I am a pretty positive person and yet I can't lie when people ask how it's going.  It sucks.  It's exhausting to have a sick child.  I can no longer say "Besides having Down Syndrome, he is healthy and doing great."  The fact is, he is sick more often than he is well.  He catches every little illness that is within a mile of us and takes twice as long to get over it.  He gets fevers.  He gets worn out easily.  His body is just not very strong.

The amazing part is that while he is often sick, he is also learning so much and making tons of progress!

We are so blessed to have amazing therapists that keep me motivated, and keep Luke on track.  He still isn't verbalizing very much, but he has really taken off with sign language.  He understands a lot of what we say and sign, but is just beginning to communicate back to us.

Signs Luke can do himself:
More
Eat
Drink
Cracker
All Done
Drum
Baby
Hat
Book
Bath
Music (His favorite sign)
Rain
Please
Thank You
Help
In
Out
Up
Down
Night-Night
Animal
Flower (He uses this for anything pretty)
Dog (His first sign)
Cat
Sheep
Cow
Bird
Pig
Fish
Monkey
Horse

Words Luke can say (although he doesn't use them very often):
Papa (my dad) - used the most
Mommmm
Dada
Daw (Dog)
Aah Duh (Addie, our dog)
nnn (In)
mm (more)
Mmahhhhh!!! (Move)
Chi Chi (Chicken)
tay too (thank you)

Christmas 2012

Hospital Stay Phone Pictures - February 2012

Summer 2013

Fall 2013