Double Edged Sword

We are finding that Matthew being one of two in the world known with his particular chromosome disorder is a double edged sword.  We know pretty much nothing about the other person with his disorder. And we only vaguely know about others with duplications on the same chromosome as his. And what we do know about those with other 4q duplications is that there is a wide range of abilities and manifestations of the duplication.  Some walk, others are in wheelchairs, some talk, and others don't. 

No one knows what to expect from Matthew--his prognosis, his disorder, his ability, his growth curve, or really anything about him.  Every so often, I wish he had a more recognizable and known disorder-- like Down Syndrome.  There are even developmental charts and growth curves for children with Down Syndrome.  There is no chart or curve that gives us any indication about what to expect for Matthew.  

Until Matthew does something, we don't really know if he ever will-- like talking.  Do we know if Matthew will one day talk?  No, not really.  No one can tell us he will.  (Hence, why I worry.)

But the other side of not knowing is that no one can say he won't.  Did we know if Matthew would walk?  No, we didn't, but he did walk!  

Navigating Matthew's journey has been like stepping into the darkness and hoping the floor is still there.  We don't know what to expect, but we'll take it one step at a time, letting him lead us where he may, and pray for the best.

Signing

After I could forsee Matthew walking, and especially now that he is, I'm focusing my 'Matthew worry' on his talking.  He seemed to pick up a few words and sounds in the last few months, but lately he hasn't been using them much at all.  Even our early developmental specialist is thinking that Matthew likely won't be talking before his 3rd birthday. 

I try not to freak out.  I remember that typical kids usually regress a bit in their verbal skills when they are learning to walk.  Matthew is ALL about walking right now, but I still worry. 

Matthew does want to communicate and he seems to understand a lot of what we say to him. And though he's not talking, Matthew seems to be picking up sign language pretty well.  Up to this point, I've been relying on my best friend (who is an ASL interpreter) to teach me the signs that I feel like Matthew will use.  I am so thankful to her, but I feel a bit guilty relying so heavily on her (though she's always more than happy to teach me). So, I started looking for a sign language boot camp for parents.  I had very little luck finding that kind of instruction, but I did find 2 wonderful resources. 

First, when Matthew was born, he had hearing loss in his left ear.  So, we were referred to the school district for language development.  We had a wonderful therapist that worked with us on Matthew's language acquisition until Matthew's hearing tested normal when he was 6 months. I contacted that therapist to see if she knew of any classes, and she very sweetly offered to come teach us a dozen or so new signs as Matthew needed them. She is too fantastic.

And I also found a program through the state of Texas that specializes in teaching sign language to parents of deaf children or those hard of hearing.  The instructors are ASL interpreting students who are in high level classes, who instruct one on one sessions weekly over video conference.  When I contacted them to see if they could refer me to a boot camp or class, I was told that when they have openings, they would love to serve families like ours as well. And they had openings! So, I started sign language class last night.

Between these 2 new resources and my best friend, I feel like I am doing what I can to help Matthew communicate.  I do pray in time that Matthew will master the spoken word.  But until he does, I want to make sure to give him all of the opportunities in the world to tell us his wants/needs.

Matthew signing.

Toddler Matthew

It took 2 years and a month, but our sweet baby Matthew is no longer a baby.  He is walking.  He no longer takes a pacifier.  He sleeps through the night.  He takes only one nap during the day.  He drinks from a sippy cup. He eats table food.  He sits in a booster seat.  He throws a tantrum when he doesn't get his way.  He is now much more toddler than baby.   

We always planned on having 3 kids, but I secretly wondered if I would yearn for baby #4 after Matthew outgrew his baby stage.  Now that Matthew is out of that stage, I can say, without a doubt, no way do I want another baby.  

Matthew's baby stage was twice as long as a typical kid's.  It was like having 2 babies back to back.  He didn't sleep through the night for well over a year.  He took a bottle twice as long as his typical counter parts. He ate baby food for twice as long.  It took him twice as long to sit up, to crawl, and to walk.  And the list goes on.  But he's finally a toddler! (Though he'll always be our sweet baby Matthew.)

I'm loving life as it is-- with our sweet toddler Matthew, our fun-loving preschooler Jackson, and our caring kindergartener Alyssa.  We are now able to enjoy the fruits of our labors. I loved the baby stage, but I don't want to go back.  I'm loving the stages the kids are in now.  And I can't wait to see what the future holds for us going forward!

The Grandparents

This past weekend, we helped my almost 91 year old grandparents move into their new place.  They have been transplanted from a retirement community outside of Tulsa, OK to an assisted living facility outside of Conroe, TX, which is closer to my folks and us.  

As I told my grandmother several times this weekend, I know that the move was hard on them.  It is a big change.  They had lived in the same town for about 35 years.  (And getting them moved was not much fun for my folks or my aunt and uncle.)  But selfishly, I'm happy to be living near my grandparents for the first time in my life. I am excited about seeing them more, and for my kids to know their great-grandparents!  

When I told my grandmother this, she surprised me by saying she wished they had made the move earlier, but it was too easy not to make the change until it was obvious they had to.  Inertia is a powerful force.  

It reminded me how thankful I am that Darren and I fought that inertia in 2006 and made the move back to Houston.  It wasn't a required move.  We liked Austin.  Darren had more career opportunities in Austin.  Our lifestyle is more 'Austin' than 'Houston'.  But our families live in Houston. And moving back to Houston was the right thing for our family. 

I love watching Alyssa dig in Granny's garden to find the roly polys.  I love hearing about the water gun fight the kids had with Grandpa at the park. I love seeing Jackson ride the tractor with Granddad.  I love seeing Matthew reach out for Grandma.  I love that the kids get jazzed about going to see their grandparents, and that we can do it on a whim. And I look forward to seeing my own grandparents more, and seeing my kids interact more with their great-grandparents.

Alyssa with her roly poly.

Jackson having a grand time on Granddad's tractor.

Matthew 'playing' golf at Granny's house.

Awed by the Walking

Matthew walking

When Matthew started walking about 10 days ago, I expected he'd be black and blue all over from the falls. He is all scraped up right now, but not from the walking. He fell off a chair in the kitchen and scraped up his face.

Matthew after his fall.

I can't believe the progress Matthew made in the week after he started taking those first few steps. He's learned to pause and balance himself.  He's learned to change directions (not always successfully though).  He's learned to start off from any standing position.  And he doesn't really fall anymore.  When he loses his balance, he just sits down.  I'm just awed and amazed!

The Odds

With the Mega Millions jackpot up to over $600 million, the news has been a buzz about the odds of winning and such.  If Matthew could play, I'm pretty sure he would win.  He seems to always beat the odds.

Odds of winning the Mega Millions- 1 out of 176,000,000

Odds for some of Matthew's uniquenesses:

Intestinal Malrotation- 1 out of 500 babies 
Missing Thumbs- 1 out of 100,000 babies
Craniosynsostosis- 1 out of 2,000 babies
Patent Ductus Arteriosus- 1 out of 20,000 babies
Horseshoe Kidney- 1 out of 600 babies
Microtia- 1 out of 12,500 babies

Odds of having been diagnosed with Matthew's chromosome disorder (4dup25q34.2q)-  1 out of 3,500,000,000 people (yes, that is 3.5 billion).

Matthew defies all the odds. I think I'll have him pick my lottery numbers tonight!

PJ Funnybunny

I began collecting PJ Funnybunny books long before I had kids.  I first saw PJ on a Saturday morning cartoon special and fell for him because he was a cute, big eared rabbit.  I then spotted PJ books when I worked in a bookstore in college, and couldn't help myself.

So, fast forward 15+ years and my PJ Funnybunny collection is finally coming in handy!  I am always excited when the kids pick a PJ book for their nighttime story.  I was even more excited yesterday when Jackson started telling us his version of the PJ Funnybunny book "It's Not Easy Being A Bunny".