Matthew's Feet

Matthew's feet have always been unique.  Many doctors have looked at them, noticed they were unusual, but never really addressed it.  When Matthew was an infant, we avoided putting socks and shoes on him because his feet would swell.  Either that went away or we noticed it less, until recently.  His feet seem swollen again.  And thinking it over, his toenails don't seem to be growing either.  I can't remember the last time we had to cut them.  

I read an article posted through the rare disease support group that was talking about appendage swelling in a child with an atypical venous structure.  Although this child's rare disease is much different than Matthew's, some of his symptoms sound a bit familiar.  Matthew has swelling in an appendage and an atypical venous structure (found during his heart cath).  We probably shouldn't ignore it anymore. So, we went to see the pediatrician to start the investigation.  

First, urine test to check kidney function. Thankfully, okay. Second, ultrasound to rule out blood clots. Thankfully, okay. Now the issue is what is next.  No specialty claims the peripheral vascular system as their own.  Our wonderful pediatrician is trying to find the right person to see next.

I don't want to dismiss this as 'just another Matthew uniqueness' until we know that it won't have any long term implications. In the article I read, the parents were searching for a doctor to help them, because the doctor they were seeing recommended amputation. I can't imagine that Matthew's uniqueness would lead to that, but I want to make sure we are being diligent now so that we don't have to do something drastic in the future. 

Matthew's unique (and a bit swollen) foot.

Happiness Is

Happiness is...

A bike ride

On daddy's new bicycle seat.

A Star Wars Lego book

Jackson's favorite book. He's taken it to Show and Tell, twice.

A movie and popcorn

Watching Puss in Boots.

A video game

Playing Angry Birds on daddy's touchpad.

A ride in the 'car cart'

I normally shy away from the big, bulky car carts,
but decided to give it a try in an attempt to placate Matthew. 
It worked!

A brownie after a Freebirds burrito

Freebirds is a family favorite.

A baby walking

I'm sure one day I will stop being awed by Matthew walking,

but today isn't that day!

Great Day!

Yesterday was a great day!  We went into the day with low expectations.  "What would you like to do today? I don't know, what do you want to do?"  So, we lazed around and spent time having a bit of fun as a family instead of trying to run errands, get any to-do's off our list, etc.  It was delightful.  

We took Jackson outside on his Spiderman bike, which does have pedals (in contrast to his balance bike) and doesn't have training wheels anymore.  After a lot of complaining about not wanting to ride, Jackson was riding his bike sans training wheels!  He needs a little help starting but he has all but mastered going and stopping.  

Jackson riding his bike for the first time sans training wheels

Also yesterday, Matthew decided he would test out walking on his own.  Previously he'd walk a few steps if we'd hold him and he'd lunge forward a few steps to get to the other person. He always needed someone to help him start out.  Yesterday, he WALKED a few steps to/from the couch.  No help needed.  It was a beautiful sight!  Our sweet baby Matthew has persevered-- and is walking!  

Matthew taking real steps! 

We celebrated the big accomplishments of yesterday with dinner out at one of my favorites, Freebirds.  Surprisingly, all the kids were pleasant, ate well and it was a nice time.  A great ending to a great day!!

Perseverance

I recently read an article that said that perseverance was a better indicator of being successful than were skill or talent.  If that is the case, then Matthew is going to be a-okay.  He perseveres more than anyone I have ever met.  It took him weeks of trying, probably dozens of times a day, but he has finally figured out how to climb up on our bed.  And who knew that the simple act of walking had 2 dozen intermediate steps? Matthew tries, and tries and tries. And though he is frustrated a lot lately, he very rarely seems to get frustrated at trying, again and again and again. 

Matthew up on the bed, on his own.

Perfect Storm of Phases

"It's a phase. It's a phase. It's a phase."  I am having to tell myself that about two dozen times a day right now.  Matthew is going through the perfect storm of phases.  He wants to always be on the move, so anytime he is confined, he flips out.  He wants to get into everything, so when he can't, he flips out.  He has many, many wants and needs that he cannot communicate, so he flips out.  He is going through a bit of separation anxiety, so if he is not being held or if you walk out of sight, he flips out.  Matthew is flipping out a lot these days-- with a mix of whining and crying and a bit of grunting.  

When he's not flipping out, he is still our sweet, happy baby Matthew. Those moments are just fewer and farther apart these days. "It's a phase. It's a phase. It's a phase."  Unfortunately, Matthew's phases tend to last about 3 times longer than they were for Alyssa and Jackson.  Should make for a rough few weeks. (Please, not months!) In perspective, this phase is a good thing as it means he is continuing to develop, but it is rough in the midst of it!

Our happy baby.

Our not-so-happy baby.

Wrongful Birth?

Ever since I read the blog in response to the couple that sued the doctors for wrongful birth, I haven't been able to get that lawsuit out of my mind.  I just can't help but to think about our journey with our sweet baby Matthew. 

A picture of my supposedly typical 'Tres'

I'm not sure what our ultrasound tech was actually looking at during my 18 week ultrasound, but she missed Matthew's missing kidney, his missing thumbs, his heart defects, his malrotated intestines, and who knows what else.  But instead of wanting to sue her, I want to kiss her!  

I keep thinking about what might have happened if she had found these things.  We would have likely been referred to genetics, a higher risk OB, etc.  Our beautiful home birth would haven been replaced with an unwanted hospital birth. We would have been scared for months and months and likely told a bunch of scary things (like we were on the first night of Mattie's first hospital stay).  Who knows what they would have suspected his disorder to be without an amniocentesis--probably trisomy 18, which is 'phenotypically similar' but different.   Like so many carrying a child with a genetic disorder, we might have been told that the child might not make it out of the womb, or that he might not live past birth, or that his quality of life may not be worth living.  Our gentle ease into Holland might have been a plane crash.  And even with all of that, it wouldn't have changed anything.  Our sweet baby Matthew would have been born exactly as he is, but our journey to his birthday likely would have been much, much scarier.  

Sure, Matthew's life has been a little dramatic, scary, and heart wrenching.

After craniosynostosis surgery

But Matthew's life has been and is full of joy, beauty, and fun.

I can't imagine a world without our sweet baby Matthew, nor would I want to. His squinty grin. His giggle. His blue eyes and dimples.  His beautiful 4 fingered hands.  His sweet disposition. His amazing determination.

I am a better person because I am Matthew's mom.  We are a better family because Matthew is a part of us.  He is amazing, strong and vibrant.  He inspires us to be better people.  He is our perfect, unique, sweet baby Matthew.   Every day with Matthew is a good day!

Wrongful birth?  Absolutely, no way!

Little Things

These little things make me smile:

Matthew saw the big laundry basket in my room and started pushing it.  He came upon the dresser, with the doors open, stopped, pushed one door closed, pulled the other one closed, and kept going.  Not only was I giddy because he was up walking with the basket, but he understood what he needed to do to avoid the doors on the dresser.  Not a big deal to most, but he understood what to do (which is sort of a big deal to us)!

Jackson has avoided time outs for the last 4 days.  Lately, I've just had to remind him to make good decisions and he's changed his attitude. We are enticing him to go 7 days by offering him something he's been really wanting (a light up lightsaber).  I sure hope the streak continues the 7 days and beyond!

I was talking on the phone and Matthew was crawling all over me.  I kept telling him "say hi", emphasizing the H sound.  He breathed out, trying to make the H sound!

Alyssa is very into reading right now, and some of her favorite books are a series called "I'll Read to You, You Read to Me".  The premise of the books is that one person reads a couple of lines, and the other person reads a couple of lines, back and forth.  At the end of each short story, it ends with "I'll read to you, You read to me" which you are supposed to say together.  When we read that part, she grins from ear to ear.

Alyssa reading her 2nd favorite series- Captain Underpants

Matthew has 2 new signs-- "Please" and "Help".  I love when he communicates, no matter the way!

The other day, Jackson was walking around the kitchen saying our telephone number.  No clue how he learned it, as we haven't worked on it and he says they haven't at school either, but we are glad that he knows it!

Alyssa has been all about games lately--Uno, Trouble, Match It, or whatever anyone will play with her.  She's happy to play with anyone, any game, anytime.  

Alyssa convinced Jackson to play Candy Land with her.

Matthew has a one tract mind lately--get into everything!  One of his favorite things to do right now is to stand on a step stool in the bathroom, brush his teeth, and unload the drawer next to the sink.  

If we can't find Mattie, 9 times out of 10 we find him in the bathroom,
on the stool on his tippy toes.