Wednesday, August 27, 2014

Diversity Poster

First, I've already noticed quite a few differences between teaching college and teaching high school (and school has just begun!) but one of the most striking differences (so far) is that I have a classroom to call my own.  In college, you are a nomad, carrying the tricks of the trade from room to room.  Now I have my own space.  No more carting folders to and from rooms (and my car)!  

So, for my stark white walls, I received a poster from my mentor.  I have seen it hanging in many classrooms and therapy centers, and am happy to see that it hangs in the rooms of my other teachers. 

While I am happy to include it on the wall of my classroom, as the mom of Matthew, I am also annoyed that this poster about diversity didn't include any diverse little hands. So, I added Matthew's.

Now it is perfect.

Saturday, August 16, 2014


Summer break ended earlier than I expected just a few blog posts ago.   

Through an amazing stroke of fate and luck, I am officially a high school teacher!  This is an amazing opportunity with great people (many of whom I met last spring) at a fantastic high school (the one in which our kids will likely some day attend!).  It has been a flurry of activity the past 10 days--interviewing, accepting, finishing my requirements, finding childcare, starting in-service training, and so on but it has been exhilarating!  The first few days, I fretted about the logistics of how we are going to move back to 2 full time jobs plus 3 kids, but my beloved is very wise. "Engineers have been marrying teachers for 100s of years, and I bet some of them even had kids."  Stepping back in the classroom, planning lessons, and thinking about student learning feels like coming home after a long trip-- so good to be home!

I was jazzed to get my badge and to see my name next to my classroom.  I think Alyssa was almost as excited about it as I was.

Tuesday, August 12, 2014

Most Favorite Words

Our little man said an approximation of 'I love you too' tonight. My heart melted.

This was the boy I feared would never talk. Don't mistake-- he has a long way to go, but this is one persistent kid... who can say 'I love you'!

Monday, August 11, 2014

Wait, Watch and Worry

We have no idea what Matthew's future holds, but really does anyone know what the future holds?  We do like to pretend we have some modicum of control and these are some questions we are often asked about Matthew's future.

Will Matthew require any additional surgeries?
Most likely. 

Hand?  We currently don't think that he will have hand surgery (pollicization) to move his index finger to a thumb position.  We have every belief that though Matthew may struggle to do certain things with his hand configuration as is (like put a coin in a slot), we know how persistent he is and he will figure out a way.  Every surgery has risks and the risk/reward puts this surgery as a low probability.  That may change with time, but this is our thinking today.

Cyst?  Matthew has a cyst between his belly button and his bladder.  Our urologist would like to remove it, as the ones he has seen often become cancerous.  But the urologist also notes that there is no telling how many of these cysts exist without issue, as the ones he knows about are the ones causing problems.  We will likely seek a second opinion before heading to the OR for this, but it is a higher probability.

Adhesions?  In April 2013, Matthew's bowel obstruction, emergency surgery and 12 day hospital stay reminded us that the internal scar tissue from his previous surgeries may continue to cause issues.  And the issue with going in to remove scar tissue is that you create more scar tissue, some of which may need to be surgically removed.  This will always be a possibility and worry for Matthew (as it was a concern just a few weeks ago).  Our hope and plan in the future is to catch it early enough to avoid an emergency situation.

What do you have to worry about with Matthew?
Besides his overall development, medically we wait, watch, and worry mainly about his heart and his kidney.

Heart?  Matthew's heart is healthy and well today, but he has some anomalies that keep us checking in with the cardiologist.

These heart anomalies give him an increased risk for aortic aneurysm, heart failure, and other serious heart issues in the future, which is why we wait and watch.

Kidney?  Matthew's lone kidney is healthy and well too, but we are rabid about keeping it so.  We see the urologist yearly to check on it, and in the meantime, we do everything prudent to keep it healthy (no NSAIDS, etc).

What else?  Matthew's other uniquenesses (the throat anomalies, or vein differences, or who know what else) may end up surprising us-- we have been surprised many times before-- but not much else is on our radar today.

I look at this list and it seems pretty tame compared to where we were 4 years ago. For that, we are VERY grateful!!

Matthew in the every day-- a busy, mostly healthy little boy!

Tuesday, August 5, 2014

Home Stretch

School starts again in less than 3 weeks.  I think everyone in our house is ready!

This week, the big kids are in a day camp while I am hanging out with Matthew. 

Mattie must have thought that there was a 'drive mom nuts' quota that he was solely responsible for since the big kids were gone.  Thankfully he must have met his quota midday Monday as he's been a joy to hang out with since.  I forgot how fun hanging out with just the little man can be!

Friday, August 1, 2014

New Friends

Earlier this week, we had an awesome visit with baby E and his mom and older brother.  Baby E is a little boy who has a similar chromosome duplication as Matthew. I believe baby E is also the only one known with his particular chromosome disorder (which includes a deletion as well). 

I met baby E's mom through an online support group for chromosome disorders.  Although I felt like I already knew them from our phone calls, emails, texts and stories online, it was really great to meet in person! It was an awesome feeling holding baby E-- it reminded me so much of our sweet baby Matthew at about that age.  And it was really nice to spend time with baby E's mom.  Though she wasn't there through all of Matthew's early years, she totally understood the miracle of Matthew today as she is walking a similar journey with baby E.  And an added bonus was that the big kids were all fast friends!

I look forward to many more visits together and seeing baby E as he writes his own familiar but uniquely his own.

Baby E and me

Matthew is used to being the baby and was not great about sharing his things!
Thankfully baby E wasn't too bothered.

Matthew and baby E both have perfect and unique little hands.

They were fast friends.
A great visit! We look forward to the next!