Happy Halloween

We had a great time tonight as the Star Wars family, trick or treating and then handing out candy. I was afraid that last year was my last year to theme the kids, but alas, I not only got another year but I also conned Darren into participating.  He thinks it was just by me buying him a Darth Vadar t-shirt, but I think it was that my Jedi mind trick worked!  Happy Halloween!

Alyssa as Queen Amidala, Jackson as Darth Maul, and Matthew as Yoda.

Darth Vadar vs Yoda (who didn't want to keep his ears on).

The queen ready to trick or treat.

Darth Maul ready to scare up some candy.

Yoda and Darth Vadar ready for some Halloween fun.

We hit one street, were done trick or treating, and ready to pass out candy at our house.

 

Looking through the loot. 
Matthew's favorite was a rice cripie treat.
Alyssa's was a blow pop. 
And Jackson's was anything chocolate.

Every year, Alyssa and Jackson have as much fun passing out candy as trick or treating.
I think it is because they get to see more people dressed up that way.

Good Progress

7 months ago, Matthew took his first independent steps.  Saturday, he mastered riding his 3 wheeled balance scooter.

 

Though Matthew's path is rarely easy or straight, he is a tenacious fighter, doing something hundreds if not thousands of times until he gets it.  God gave Matthew the pefect disposition for the uniquenesses he was given. I watch in awe of how far he's come.  And we continue to pray that his switch gets flipped in regards to language very soon. 

Matthew v 2 Year Old

I often wonder how much of Matthew's behavior is uniquely Matthew and how much is just him being 2 years old. 

Going Out To Eat
We typically limit our eating out to 2 times a week, usually on the weekends.  Lately Matthew has been a nightmare to take to a restaurant.  He squirms in the seat (no matter the type- high chair, booster seat, big chair, booth) for the first 5 minutes, he eats for about 3-5 minutes, and then he loses his mind wanting to get down and roam around for the remainder of our time out. Since this has started a few months ago, we have mostly limited eating out to restaurants that are (a) loud and (b) open to kids roaming around.  We aren't happy with either these restrictions or his behavior, but it is what it is right now.  Ugh. Matthew's restaurant behavior-- Uniquely Matthew v 2 year old?  Not sure.

Television
Matthew still doesn't watch tv.  He will sit down with Alyssa and Jackson for about a minute and a half when they are watching a show, but that is it.  Doesn't matter the show-- animated or not, educational or not, kid focused or not.  This normally isn't an issue, as he is pretty independent and will often entertain himself while the kids watch something, but it does make me a bit sad.  First, he won't watch shows that would be beneficial for him, like Signing Times.  Second, Matthew doesn't care at all about Sesame Street.  Our days of Big Bird, Elmo, Oscar, Bert and Ernie are completely over unless he suddenly takes an interest.  They have been a big part of our house for a very long time, and I had imagined that they would be here a bit longer with Matthew, but sadly that just doesn't seem to be the case.  Matthew's tv viewing-- Uniquely Matthew v 2 year old?  Seemingly uniquely Matthew. 

Unless Matthew comes around soon, I guess I'll sadly have to take down the custom made Sesame Street shower curtain and embrodiered towels from the kids' bathroom.

Ailments
Matthew was healthy for 8 weeks in a row at the end of the summer/beginning of the fall. He had croup in August, and then was healthy until a week ago when he ran a mystery fever for a day. That is the longest stretch of health Matthew has had in his lifetime.  Usually, Matthew catches a cold or stomach bug or whatever is going around approximately every 3 weeks.  In comparison, 8 weeks seemed like a LONG time.  And now today, he woke up a bit croupy.  I think 8 weeks of health during the fall/winter would be a little too optimistic, but 1 week seems a bit too short.  Matthew's immune system-- Uniquely Matthew v 2 year old? Likely a combination of both. 

Eating
We have been fighting Matthew's weight since his 2 month baby well visit appointment.  Matthew struggled to take a bottle. He ate baby food until he was 2.  But now, he eats table food & drinks from a cup.  He doesn't have trouble chewing or swallowing. He eats all foods and all textures.  But he just doesn't eat enough--whether it be healthy foods (bananas, noodles, peas, etc) or less healthy foods (chicken nuggets, pizza, etc) or plainly unhealthy foods (fast food, cake, etc).  Doesn't matter if they are his favorite foods or foods he has never tried before.  3-5 minutes at the table, and he's done.  I can't make him eat more food, or even more fattening foods.  Ugh.  He is 2.5 years old (32 months), and weighs 24 pounds.  He is off the chart too thin.  But he reminds me frequently that you can lead a toddler to the food, but you can't make him eat.  Matthew's eating issues-- Uniquely Matthew v 2 year old? Eating habits may be similar to 2 year olds, weight issues seem to be uniquely Matthew.

Highs and Lows

Through parenting Alyssa and Jackson, we learned that parenting is full of highs and lows, joys and challenges.  So, when it came to Matthew, we expected more of the same, he is a kid after all! 

Matthew hasn't disappointed-- with him, we have had highs and lows, joys and challenges.  And Matthew's uniquenesses have exacerbated those highs and lows-- they are often more dramatic highs (see the Mama post) and dramatic lows (see any of the ICU posts), and there are also more tempered, but more frequent highs and lows.  Following Matthew's 'mama' on Tuesday last week (dramatic high), he went days without saying it, and has only said it 3 or 4 times total since. It worries me, did I just mistake a well timed babble for a word? I watch that clip over and over again to make sure he said it about me.  He did, but now he doesn't do it consistently (tempered low).  His journey is never as straight and easy as I'd like. 

The highs and lows aren't always day to day, they can be moment to moment.  In music class, I will beam because my sweet baby Matthew is interacting with his peers, following directions, and having a good time (tempered high).  And then I will notice how his peers are all talking in complete sentences, and recognizing colors, and starting to count...all while I'm excited that he said 1 word-- once (tempered low). 

I have to remind myself time and time again that although Matthew is just a typical kid in many ways, his journey is truly unique.  His experiences have been dramatically different, as are his genetics.  So, I should expect that our experiences parenting Matthew will be similar in ways and unique in others. I sometimes forget that. 

Mama

At Matthew's last speech therapy appointment, he saw a cow and tried to say the word "moo".  He hasn't yet figured out that he needs to open his mouth all the way, so it is a bit garbled, but it is a 'moo' nevertheless!  Words are coming, albeit very slowly. 

And lately, Matthew has been saying 'mama' tons.  But I have been seriously doubting he is saying it about or to me.  He just doesn't seem to be looking at me when he says it-- until today!  We were on the couch and he was not only staying still (which is unusual) but he was cuddled up next to me (even more unusual), so I wanted to capture the moment. I pulled out my itouch to take the picture, and when Matthew saw us come up on the screen, he clearly said 'mama'!  So, I captured the next time on video.  It might be wishful thinking, that I've wanted this for so very long, but he seems to have said 'mama' to me!  It made my day, week, month, maybe even year!

Saturday Night

Alyssa went to her first slumber party on Saturday night.  7 girls, lots of fun, and from what I could tell, not much slumber.  We all paid the high price on Sunday.  She was tired, cranky, and it was just an ugly day.  The price we pay for fun!  Thankfully she seemed much better this morning, even though we had to wake her up for school. 

Before the slumber party.

After the slumber party.

To keep Jackson from feeling too left out, Darren and Jackson had a campfire with smores and beer ("root" for Jackson, "adult" for Daddy).  The big boys had a nice evening too, and also stayed up a little too late.  Jackson weathered it better on Sunday than Alyssa did. Thank goodness- the day was ugly enough as it was! 

The big boys backyard campfire.

Helping, Reading, Building, and Learning

Happy moments from the last week--

-Matthew has become quite the little helper.  When I vacuum, he vacuums with his little vacuum. When I wipe the table, he goes to get a rag to help.  When I step out of the shower, he likes to hand me a towel.  It is so sweet!

-Alyssa's class was just approved to check out chapter books from the library. This thrilled our little reader.   We have begun to let her read on her own in bed for a few minutes after nightly tuck in.  I am in awe of what a big girl she has become!

-As a reward for very good behavior this past week, Jackson and Alyssa received a small Lego kit each.  They worked their kits independently, without any help, and without any frustation.  It was delightful!

-Jackson has seemed to turn the corner in school.  He doesn't complain about it near as much and he loves to share with us some of what he has learned. 

Toddlerhood

I looked at Matthew today and noticed he was wearing one of Jackson's old shirts.  Really this shouldn't have come as a surprise as most of Matthew's wardrobe was Jackson's.  But today it struck me that Matthew is now the same age as Jackson was when Matthew was born.  I remember Jackson wearing that shirt in one of Matthew's newborn pictures.  It took me back and I couldn't help but to make comparisons from Jackson at that age to Matthew at this age.  I know we are on a different journey with Matthew, but sometimes the difference is jarring. I texted Darren with my observation that Matthew is now Jackson's age at Matthew's birth.  His response reminded me of what matters most-- "Our miracle baby has made it to toddlerhood!" 

Though Matthew is fully in toddlerhood, I do worry that maybe I am holding Matthew back, that since he is still the baby of the family, that I've allowed him to be a baby longer.  He will always be my sweet baby Matthew!  I think this is a concern for every parent -- how much do I push, how much should I expect, and how much should I help, how much should I accept?  This has been a struggle of balance for us with Alyssa and Jackson, but like many other things, it is exacerbated in Matthew by his uniquenesses. 

State Fair

This weekend was our first family outing to the Texas state fair, which is held in Dallas.  The weather was a little cooler than we are used to, in the lower 50s, but the rain held off and it was a delightful day and experience!  And as an added bonus, we spent the night at Uncle Bryan's house!  (Thank you, Uncle Bryan!)

Bundled up for the tram ride.

Jackson still loves tractors

This was one of the cutest things at the fair--
On the 'farm' the kids were given chores like watering the trees, planting the veggies & milking the cow.
All 3 kids loved it.

Alyssa and Big Tex.

This was in front of the fun house that Alyssa and Jackson enjoyed.

This was Aly and Jax favorite ride.
On the race track, the car gets slung around the turns.

Even Matthew was able to ride a ride by himself.
We all had tons of fun!

Happy Heart Day!

Two years ago tonight, Matthew was in the ICU at Texas Childrens with a machine breathing for him following his heart catheterization to fix his failing heart.  Today, Matthew's heart is healed.  He is strong.  He is healthy.  He is active.  He is alive.  Thanks to our pediatrician and GI who kept looking when all other doctors said "he doesn't look like a heart baby".  Thanks to our cardiologist, who took one look at him and said "Let's do an echo to find out what is going on." Thanks to our cardiac surgeon, who fixed our sweet baby Matthew's overcirculated, failing heart. Thanks be to God! 

Matthew is able to climb, run, and jump thanks to his mended and healthy heart!

Transitions

Tuesday we met with the school district about Matthew's transition from early intervention services to the school district's preschool for children with disabilities.  It was a quick meeting with basic information about the assessment and upcoming meetings, but it sets in motion the big change in Matthew's life (and ours) that is coming in less than 5 months.  It is already giving me anxiety.  We have a lot of research to do, decisions to make, and questions to have answered before then. 

Also on Tuesday, we met with Matthew's new occupational therapist.  This is our 6th occupational therapist in 2.5 years.  I struggled to find the right words as I do with everyone new that meets Matthew.  How do I convey to them that Matthew is a miracle?  That the very fact that he is here is amazing.  That much like Tigger from Winnie the Pooh, he's the only one.  That until he does something, we aren't sure if he ever will.  I know in time she will come to know that not only is he unique, but he's amazing as well.  With the high turnover rate of OTs, I hope that she is around long enough to figure that out on her own.  Either way, Matthew will transition to someone new in less than 5 months when he moves to the school district.  Lots of change.

Pantry

Matthew is everywhere and anywhere.  Though, he hasn't yet figured out how to turn the door knobs in our house, and we are of two minds about that.  On one side, turning door knobs is a skill he will need. On the other side, once Matthew can open doors, there will be no stopping him.  So, for now, he will close the door and be locked in, at least at our house. Usually he will holler when he wants out of whatever room or closet he has closed himself in.  One of his favorites right now is locking himself in the pantry. He'll sit on the juice pouch boxes we store on the floor, knock on the door, and laugh when we open the door.  Great fun!

Please Talk

Several times a day, I pray 'please let Matthew talk!' and I plead with Matthew 'please talk'.

Why I think Matthew will talk:  He has so much to say.  He is a social kid. He knows words have meaning.  He communicates with sign.  He has started to vary his sounds and noises- mamama, dadada, bababa, ahhhhh. He babbles.  He uses jargon- meaning that if you ask him a question, he will answer you verbally even though it is nonsensical.  He has figured everything else out to this point-- crawling, walking, running, climbing, eating, and so on.  The switch just needs to be flipped.  Several friends have children that didn't talk until they were 3.  No one can say he won't talk. 

Why I fear Matthew won't talk:  He isn't talking-yet.  The kids we know who didn't talk until they were 3 were on the autism spectrum, which Matthew isn't.  There are kids with similar duplications on the fourth chromosome that don't talk.  No one can tell us he will talk.  Until Matthew does something, we don't know if he'll ever do it.

So, we keep working on it.  And until he does, I keep going to my ASL classes, praying that he'll one day talk and joking that he probably will a day after I become fluent in sign language.  Please, God, let Matthew talk.

Matthew dancing with Granny at the vow renewal.

 

71 Years

Last Friday night, my grandparents participated in a vow renewal ceremony at their assisted living facility.  It was a nice event and we enjoyed celebrating my grandparents' 71 year marriage.  71 years!  Simply amazing!