Fantastic Friday

Nothing big today, but a few little things that added up to a fantastic Friday. 

This morning was 'donuts with dad' for the kindergartners. 

This has not been a stellar school year for Alyssa, but I am happy to report there were some bright moments (like her presentation on dolphins, where it was very nice to see her passionate about a project) and deep down, this year hasn't changed who she is-- the little girl that loves school. I love that when I ask if she wants to leave early (as many were doing today after 'student led conferences'), she always says no, that she'd rather stay at school a bit longer.

Matthew loves his flip-flops but he isn't allowed to wear them to school.  So, the moment he got in the car this afternoon, much like Fred Rogers from Mr. Rogers Neighborhood, he took off his sneakers and put on flip flops (though I think for Mr. Rogers it was dressy shoes and sneakers). 

Happy Friday!!

Reunion Reflection

So, every 5 years, Darren's extended family gathers together for a family reunion.  As we are on year 4, the emails have started circulating about next year's event.  I can't help but to think back to past reunions. My first reunion, I was pregnant with Alyssa, but the last reunion, all 5 of us were there, but oh, my, have we changed! 

As you can see, Alyssa and Jackson have grown up, but I am most struck at the difference in Matthew.  At the reunion in 2010, we had a lot of fun, but it was a lot of work too as Matthew was taking 5-7 hours to eat...every day.  And he only wanted to do it in our dark bedroom.  And we would struggle to get enough in him.  We worried about his malrotated intestines... as the radiologist scared the dickens out of us, telling us he might die because of it and surgery wasn't scheduled until after the reunion.  Heart surgery wasn't even on our radar.  We didn't know that his heart was sending 4x more blood to his lungs than should have been.  Or that his heart was already starting to fail.  We hadn't noticed that his forehead was starting to come into a point, and had no idea he would be sporting 102 stitches all the way across his skull in just a few months. 

Four years seems like forever ago.  A different life.  Thankfully!  Oh, I so look forward to the reunion next year.  It will be just as wonderful, but a totally different (and likely more enjoyable) experience with our 'more mature' family of 5. 

Banana

One of my (many) concerns about Matthew and his diagnosis was that he would always be dependent on myself and others for his wants/needs. Yesterday, I found evidence he desired, obtained, and consumed a banana totally on his own. The pictures show the evidence as I found it while Mattie had moved on to something else. Happy day!

Hmmm...time out chair in the kitchen.  Wonder what is going on.

Banana peel on the counter.  Guess Matthew helped himself.

I guess Matthew ate his banana at the table, as evidenced by the leftover banana vein.

And moments after I turned my back, he did it again, proving it wasn't a fluke.

 

11 Week Update

It has been 11 weeks since Jackson broke his femur inside of his hip joint.  At his follow up appointment this week, the orthopedist was happy with his progress and Jackson was released for more activity.  Though 'big green' wasn't much fun, we are so very thankful that he didn't need a screw for the break, as the long term effects of having a screw in that area are not good.  This is the best outcome for the unfortunate accident. 

Jackson is now allowed to walk to school, to run a little, and to ride his bike.  He will get off PE restriction in time for field day at school (though the PT still wants to approve the list of activities).  He still won't be allowed to jump on trampolines or bounce houses or play ball sports through the summer but I doubt that will impact us too much. 

Some Hoy Highlights

It has been a busy couple of weeks, but here are a few Hoy highlights:

This random letter from Jackson, given to me the week before Mother's Day, made me feel like a million bucks.
He's a sweet kid!

After many years of not having cable tv, we had it installed the other day.
The first show we watched was Mickey Mouse Clubhouse on the Disney channel.
Matthew thought it was the BEST!  He danced, smiled, sang, and watched the entire show.
Well worth it.

We are coming up to the year anniversary of our move to Austin.
For many reasons, it now feels like home. 
One of my favorite reasons is that our yellow bell to the right of the garage has bloomed, just like in our old house. 

Alyssa finally finished reading this book to me.
At a page or two a night, getting through 217 pages took a while!

Since August of last year, we've been to 5 weddings. 
This was the last of the 5.  We had a fun night reconnecting with high school band friends!
Congrats to Eric and Kathryn!

Team Matthew

Over the last 4+ years, Team Matthew (those that help us with Matthew's care and development) has changed members quite a bit.  Therapists come and go.  We moved.  Matthew's aged.  and so on.

Once again, Team Matthew is about to undergo another change.  In the Fall, he'll change schools and attend the same school the big kids currently attend-- our 'home campus'.  In preparation of this, Team Matthew (school version), both current and future, met for an introduction and update on his progress this year.  Our full ARD (school meeting where we set out goals for the year, etc) isn't due until September but we wanted to get everyone in a room and at least get to know one another.  His current teacher, school speech therapist, and school occupational therapist were there as well as his future teacher, his future school administrator, and his future speech therapist.  His school occupational therapist will remain the same as she services both schools. 

It was nice to reflect back on Matthew's development this year.  In the day to day, it doesn't feel like he's making huge progress, but looking back, we can see it is pretty awesome progress.  Not to say he doesn't have a LONG way to go, but this year has been a good year! 

For example, I can no longer count the number of words Matthew has-- he has too many to count.  It doesn't mean they are all understandable by an outsider, but when you know context + sounds + signs/gestures, you can ascertain quite a bit!  I liken his verbal abilities to this graphic:

As with many changes in Team Matthew, it is bitter sweet.  We have been very happy with his current school, but are looking forward to having all 3 kids at the same school.  As well, though Team Matthew has changed over time, the group has always been the best.  Meeting the newest members gives us confidence that will still be the case!

No Armadillos

I couldn't even guess how many hours I've spent looking at the 4th chromosome (Matthew's duplicated chromosome) and its associated genes. 

My most unusual finding is that there is a gene in the area of the chromosome of Matthew's duplication that makes someone more susceptible to leprosy.  And after digging further, I found out that armadillos carry the bacteria that causes leprosy.  So, no touching, playing with or eating armadillos for Matthew. 

I spent hours looking at that chromosome and those genes in an attempt to understand any potential risks and/or areas of concern for Matthew and his future.  Then, I read a news article a few weeks ago reporting research on a set of identical twins, one with Down Syndrome (duplication of chromosome 21) and it blows away my assumption that I only need to worry about Matthew's 4th chromosome with the associated genes.  The key findings that really shook my thinking: "Researchers have presumed for decades that Down syndrome is mainly caused by the overabundance of effects of chromosome 21 genes. The findings, published today in the journal Nature, show that a third copy of chromosome 21 disturbs the expression of all DNA in the genome."

So, I spent hours pouring over the 4th chromosome and the genes, and going down the bunny hole to figure out how to best mitigate the effects for Matthew (like no armadillos), but this study indicates that time was likely for naught for it isn't just the 4th chromosome and those genes I need to be concerned about, it is every chromosome and every gene. 

I had deluded myself that I had a modicum of control-- and I really don't. 

We still won't be getting friendly with armadillos any time soon.

No More Walker

Just a week and a half after he got the cast off, Jackson was no longer using his walker.  Now two weeks plus, he still has a limp, which is most obvious after a day at school, but the progress is impressive!  He's even started to trot a bit, even though he's not supposed to be doing so quite yet.  I think the challenge now will be keeping him from doing things he's not allowed!

The family helping Jackson with his PT exercises.

Girls Weekend

This past weekend, Alyssa and I went to Mother/Daughter weekend at a girls' overnight summer camp.  It is a 'preview' weekend for summer camp.  We went with a friend, sister of friend, a friend of that friend, and all of our daughters.  We had many laughs!  It was delightful, save the camp 'mattress'.  I'm not much of a 'camper' but wanted to give Alyssa the experience.  I was happy Alyssa seemed to really enjoy herself and I'd gladly do it again for the smile on her face! 

While the girls were away, the boys played too.  They got haircuts, went out to eat, hung out at the pool and played video games.  A fun weekend for all!