The Pay is Great

It's often exhausting and sometimes trying, but being the 'mom' is the greatest! 

Slow and Steady

Slow and steady doesn't win the race, but she finishes!  

I ran my first official 10k (6.2 miles) this morning, and though was a little disappointed with my time and the heat, I finished.  I loved seeing Darren, Alyssa, Jackson and Matthew cheering me at the finish!  One tick off my bucket list for this year.

 

Bike Ride

Jackson has been riding his bike for a month, but has had trouble starting out.  Given Jackson's history with patience and persistence (not his current strengths), I was totally surprised when yesterday he figured out how to start on his bike--on his own, without prodding, after trying time after time, without really getting frustrated.  I was so proud and excited for him! 

Tonight we went on a family bike ride.  I loved watching Alyssa in the lead, Jackson navigating like it was old hat, and Matthew enjoying the ride from the seat behind Darren.  Great day!

My view on the ride.

A Switch

Today is the one month anniversary of Matthew walking.  I look at him walking and am still amazed--not only that he is walking but how very well he is walking. He walks more than he crawls.  He's actually pretty steady now, able to stop and stand (and often pet the dog), and then continue onward.  He rarely falls, and more often just sits down when he loses his balance.  He can turn and change directions.  He can multitask and carry something while walking.  Simply amazing.

Again, it makes us question how much we have to do with his development (through practice, therapy, etc) and how much is just a developmental switch that gets flipped within Matthew's brain when the time is right.  As Matthew has 6 therapy appointments a month (occupational therapy, physical therapy, and early speech development), plus the time we spend working on the tips and tricks we learn in therapy, I am really hoping that we at least are laying some ground work that makes it easier for him once the switch gets flipped.  But it really does seem that Matthew is able to do something (and pretty well) only when that developmental switch gets flipped, when the time is just right.  We never know when that time is, but are so very thankful that for walking that the time was now!

Left the Buidling

The medical walker has left the building!  It served Matthew well for almost 3 months, but he is now an independent toddler.  Yippee!!

It might be ugly and cumbersome, but I loved it.  With the help of that walker, we saw our sweet baby Matthew take his first steps, and from there, he figured out how to take the steps on his own. Lately, about once every other day, Matthew would crawl or walk over to the walker, take it for a little walk and then he would walk away from it.  Definitely time to pass it along, and the walker will be going to another little girl tomorrow. I hope she gets as much use out of it as Matthew did, and her parents love hearing the sound of it around their house like we did.  And most importantly, we hope that she only needs it as a transition to walking independently too. 

One last picture of Mattie with his walker--

Excited and Exhausted

Last week was a particularly exhausting mommy week. It wasn't bad, or really trying my patience, or unusually stressful, as much as just physically exhausting. 

We are overjoyed that Matthew has entered his next developmental phase.  I had forgotten just how exhausting that phase can be.  He's everywhere, into everything, leaving a wake of destruction in his path.  Please just ignore the 5 shoes from 5 different pairs, the toys, the paper, the remote controls, the books, and anything else Matthew can reach that litter our floor.  It is a waste of time to pick up while he is awake. 

He also is adventuresome with no fear, almost to a fault.  We have to always be on guard for what might happen next. A day last week, as I was coming in from putting Jackson in time out for what felt like the 6th time that day, I found Matthew sitting on the kitchen table, a bit too close to the edge for my comfort.  And at a friend's house this weekend, Matthew head dived (likely not on purpose) from a kitchen chair onto the tiled floor.  Thankfully, Matthew's guardian angels seem to work overtime! 

Matthew is also struggling with his wants and needs and his lack of ability to communicate.  When he gets mad at us, he gets what I affectionately call 'slap happy'.  He slaps at our face like a cat would swipe at a dog.  I know it is just his frustration and this too will pass. Until then, I am trying to teach him to sign the word "mad" so that he'll have something to do with his hands when he is frustrated, but so far he hasn't picked it up.

So, Matthew (in his toddler phase) + Jackson (who is currently struggling with the term "good choices") + Alyssa (who is 6 going on 16) = one tired mommy!  (Not to mention the shedding dog and the persistent sugar ants residing in our kitchen)

I was hoping this week would be a new week, but Darren woke up in serious back pain this morning at 5am, Jackson had 2 time outs before 7:45am, and Matthew unpacked the lunch I packed to take to work and the dog ate my sandwich.  Looks pretty much like last week.  All I could do is smile and laugh. 

Exhausting, but it is a good life!

Special Child

Special Child
by Sharon Harris

You weren't like other children,
And God was well aware,
You'd need a caring family,
With love enough to share.

And so He sent you to us,
And much to our surprise,
You haven't been a challenge,
But a blessing in disguise.

You're winning smiles and laughter,
The pleasures you impart,
Far outweigh your special needs,
And melt the coldest heart.

We're proud that we've been chosen,
To help you learn and grow,
The joy that you have brought us,
Is more than you can know.

A precious gift from Heaven,
A treasure from above,
A child who's taught us many things,
But most of all- "Real Love"

Simple Things

We not only take great joy in the hard earned victories (like Matthew walking) but also in the smaller, simpler things that go right as well.

Earlier this week, Matthew learned to climb into the kitchen chair on his own (and then up on the table).  And then he also figured out how to climb the stairs of the bunk bed.  He seemed to be thinking about it for a few weeks, and then on Tuesday, he just climbed all the way up, and then down, and then up, and then down.  He was so proud of himself.   

Speaking of the little things, when Matthew went to occupational therapy at TCH (~Fall 2010), we often had the same appointment time as a 5 year old girl who was learning self-care (brushing her hair, washing her hands, brushing her teeth, washing her body).  I remember watching her week after week struggle with those every day tasks.

So, I'm ultra excited when I see Matthew do those things (without OT).  He loves to brush his teeth (but hates it when we do it for him).  He brushes my hair and his every morning as I dry my hair (and he gives me big wet kisses then too).  And just recently he has begun to hold out his hand for baby soap so that he can rub it on his body during his baths. 

I know these are simple things, but Matthew has often struggled with the simple things.  Of course, he has a long way to go to perfect them, but I don't think he's going to need to spend week after week in therapy to do them.  We rejoice in all the victories...hard fought and not. 

Brick and Stick

On CNN on Monday, a reporter was interviewing a grandfather who survived the previous weekend's tornado in Oklahoma.  I loved this part of the story: 

As to what treasured mementos he hopes to find among the wreckage, Lord (the grandfather) said he already had everything he needed.  "I found them. My son, my daughter, my son-in-law, my grandbabies, my wife," he said. "Everything else is brick and stick, and they're all easily replaced."

What a fantastic reminder about what is important. God bless Mr. Lord and all of those impacted by the tornadoes. 

Everything else is just brick and stick.

Within Reason

I had a bad dream last night.  Matthew was in the hospital struggling to breathe, and the doctor had told me his prognosis wasn't good.  I didn't want to go back to sleep after that, and stayed awake to say a prayer of thanksgiving-- so very thankful that it was just a bad dream. 

In the last 2+ years, I have thought about life and death decisions more than I ever have before, and not in just my dreams.  I have sat next to too many hospital beds praying to God to let Matthew live.  I have watched Matthew's pulse oxygen rates plummet and heart rates skyrocket. I have seen a machine breathing for Matthew. I have heard heart rate alarms going off because Matthew's heart rate was too low. I have been in a small consultation room, praying the doctor would not come in to tell me the worst news in the world.  I've been in the ER, holding my baby tight, praying that my sweet baby Matthew would be alright.  Matthew has cheated death time and time again.  And though no one wants to think about it, during these scary times, I've thought about the different scenarios, what they might mean and what I might do. 

Several months ago, I read an article posted on a friend's facebook wall-- How Doctors Die.  I can't shake this article out of my mind.  It was extremely illuminating for me to read about how doctors would respond if they were making life and death decisions for themselves.  I always thought I would say "do everything possible" but now I know the words I would really want to say are "do everything, within reason".  

I am thankful that thus far I haven't had to make these decisions. And I continually pray that I never need to utter those words.

Running Random Thoughts

I've now been running for over a year, and at the end of April I will run my first official 10k (6.2 miles).  I may run 3 times a week and technically be a 'runner', but I still feel like the 7th grade girl who might not pass P.E. because I struggle to run one 12 minute mile.  

This is the girl who struggled to run one 12 minute mile,
and when running I still feel like her though I'm 25 years older.

I can now run 6 times more than that little girl, and faster than that little girl, but I still don't feel like a runner.  6.2 miles is a long way for me, even though it's 20 miles less than a marathon. A marathon runner I am not!

I recently found a new motivation to continue my weekly runs.  I made the following comparison to my students.  My 2 weekday runs= homework.  Eating right/Drinking water= studying.  My long weekend run= exams.  My 'race' day= final grade.  If I don't do my homework or don't study, I have trouble on my exams.  If I have trouble on the exams, there is no way I will get the final grade that I want in the end.  By making this comparison, I feel obligated now to run.  I can't very well lecture my students on the importance of these things if I'm not doing them (albeit in a different way).  A strange motivator, but it is working right now. 

No matter how motivated I am to get out the door or how far I run, I struggle for motivation at the end of my run.  To combat this motivation lag, I often think about how hard Matthew trained to walk.  I think to myself that if he can work that hard to walk, I can work a fraction that hard to run.  I originally thought that the image of him struggling to walk would be less motivating when he actually learned to walk, but just the opposite.  I have seen how far perseverance can take you.  I have seen the struggle, the hard work, and the most beautiful of outcomes. It is so inspirational. 

I've come a long way in a year, but I have a long way to go to be as strong as my sweet baby Matthew! 

Matthew Expert

After calling the surgery off on Friday and not seeing any major signs from Matthew that he was sick over the weekend, I was starting to doubt my self proclaimed title as "Matthew Expert".  Over the weekend, I continued to think that though I was glad to error on the side of caution, how could I have been so wrong about Matthew brewing yet another ailment.  I thought I was more attuned to him than that. 

Ah...but Monday morning, Matthew woke up hoarse with a runny nose. He was starting to get sick on Friday. It seems to be just another little cold, but definitely not something we wanted him to be fighting when he underwent anesthesia, especially for 3 hours.  

Though I'm not glad he has a cold, I am glad that I still know my sweet baby Matthew, probably better than I know the back of my hand.  I guess I get to keep the title for now.  

 

Nice Weekend

This weekend, both Darren and Jackson have been fighting a cold.  Ironically, Matthew doesn't really seem sick, but again, better to regret not doing the surgery than regret doing it.  Despite the colds, we had a nice weekend.  Jackson had a t-ball game, where he got the game ball.  At 4 years old, they rotate who gets the game ball, but it excited him never the less.  Alyssa had a softball game on Saturday too, which she rocked!  A single, advanced a runner, a double, 2 RBIs and got 2 outs at home plate.  It was a big game for her-- and they won to boot!  We followed it up with an enjoyable dinner out, some Star Wars Wii gaming, and time just relaxing and having fun.  

Our Cardinals

Alyssa lost another tooth, and now is missing 4 in the front.

Matthew enjoyed the ballpark popcorn.

No Surgery Today

Yesterday was a very long day.  4 hours in the car driving to Dallas with a 2 year old who despises his car seat.  Then 4 hours of pre-op appointments, and no nap, for Matthew.  First, admissions.  Then, the hand surgeon.  My favorite part of that visit was after watching Matthew, her telling me that she wasn't building Matthew a thumb, she was just moving the one that he uses to a more optimal location.  Then, pharmacy. Then, anesthesiology, which is never a quick visit when you are talking about Matthew, his 6 previous surgeries, and his complicated past with anesthesia.  And finally, the visit with the nursing staff where we were shown our room for the night.  Hmmm--didn't know that it wasn't a private room. And then was surprised further to find out that Matthew's 6 year old roommate had a staph infection.  Definitely not something you want to hear the night before major surgery.  

We had planned on going out to eat with Matthew's uncle Bryan, and would need a pass out of the hospital for the evening, so I just had them extend the pass so that we could stay gone for the night and come back in the morning.  Matthew and I would have a better chance of a good night's rest in a hotel for the night.  We'd be staying at the hospital after surgery, no need to do so before hand.  

We had a nice dinner with Bryan, headed back to the hotel for one last bath before a 6 week period of sponge baths, and then bed.  Matthew was not pleased at all with the hotel or pack and play, so he screamed for almost an hour.  Finally at 8:30pm, it was quiet.   Ahhhh...

Mattie did enjoy his bath

And then Matthew cried out and coughed.  My mind started racing.  "No, no, no, no.  That was not a cough. Oh goodness.  I hadn't really considered that this surgery might not go as planned.  What if he got a prolonged case of croup afterwards, like last year's nasal repair?  We are in Dallas. What if something goes wrong here and he has to stay? What if it is something worse? What if his immune system is compromised by a cold, and then the surgery and he catches a staph infection too? How will he react to the 3 hours of anesthesia?  What if he can't breathe on his own like after the heart cath?  What if something goes wrong? What if this isn't the right decision for Matthew?"

What ifs ran through my mind faster than Matthew can crawl. Meanwhile, Matthew coughed a bit more.  I was concerned, but was still planning to take Matthew in for his surgery and let the nurses assess him that morning.  And Matthew cried and coughed a bit more. I prayed-- "Please God, give me a sign.  Let me know one way or another if the time for surgery is now."  Then, Matthew coughed a few more times and proceeded to let out his bloody murder cry.  As not to wake the entire hotel, I pulled him into my bed to calm him down and hopefully get a few minutes (hours seemed like too much to hope for) of sleep.  

As I lay listening to my sweet baby Matthew fall asleep next to me, I heard the faint rattle of congestion coming from his chest.  Thank you, God, for letting me know that today was not the day. 

Instead of surgery, Matthew and I drove the 4 hours back from Dallas today.  I have already second guessed my decision to cancel-- "Does he really have a cold or was it just allergies or the air conditioning in the room?" but I would rather second guess not doing it today rather than wish that we hadn't gone through with it.  This is an elective procedure. One that can be done anytime from ages 2-72.  We still think this surgery would make life a bit easier for Matthew.  But this reprieve has given us pause to reconsider-- what about the risks?  what if surgery doesn't go as expected (4 out of Matthew's 6 haven't)? is this the right age for this surgery? is this the right hospital/doctor? is this the right decision?

Just because today didn't go according to our plans, doesn't mean it wasn't to plan. Today was our last opportunity for the surgery before summer. They advise against getting the cast sweaty (germs and all) and with summer coming up, that would be unavoidable. Plus, we don't want to be land locked for 6 weeks in the summer.  So, the next time to reschedule would be at the end of the summer. That will give us time to reconsider all the questions that give us pause before a new date.

Many thanks to all of those that have thought and prayed for our sweet baby Matthew and this surgery.  We know that prayer is powerful-- and have seen it time and time again, especially in our sweet baby Matthew.  Thank you!

It Is Booked

In October of 2010, I was out of my mind scared that Matthew wouldn't make it through his craniosynstosis surgery that was scheduled December 2010.  I frantically needed family pictures of the 5 of us before that surgery.  Our dear friend (Kirsten) surprised us with the sweetest photographer (Brooke), who captured our family a few weeks before the surgery. 

I came home from that session and instead of being relieved, I freaked out.  I explained to Matthew (who was almost 8 months old at the time) that just because I got the pictures of the 5 us, in no way did that mean that he could leave us.  He had to not only survive the surgery, but he needed to thrive afterwards.  So I promised if he did thrive, and in time learned to walk, we'd take him to Disney World.  Not that he understood any of this, but I needed something far down the road to concentrate on--a promise to hang out there.   

And now, almost a year and a half later, Matthew is thriving... and walking!  He has lived up to his end of the bargain.  So, we have booked the trip to Disney World!  It is quite a ways out due to schedules, so maybe Matthew will be running by then!  I think back to that day and am amazed by how far Matthew has come. I'm thrilled and can't wait to celebrate at Disney World!!

 

T-4 Days

Matthew's beautiful 4 fingered hands.

I will never forget the moment that we found out that Matthew was born without thumbs.  We were standing in the pediatric examining room, watching as the on-call pediatrician examined our few hours old sweet baby Matthew.  She asked whether we had an ultrasound, and after we answered yes, she said "so, you know about his hands, right?".  I remember looking at his hands and counting those 4 fingers. I remember saying I needed to sit down. I don't remember much else until we were back in the car. I sat in back with Matthew and I watched Darren drive home trying not to use his thumbs.  That day, I remember calling my mom and saying "he doesn't have any thumbs".  And getting a youtube video from my best friend of a girl doing everything with no thumbs. And finding the article about pollicization from the Boston Children's Hospital. It was the start of Matthew's unique journey.

Though that day was dramatic and felt devastating at the time, looking back, we wish that Matthew's lack of thumbs were all he had to contend with.  He is amazing with his 4 fingers.  He can palm a ball.  He can hold a cup.  He can scribble.  He can hold a steering wheel.  I have no doubt that there would be no limit to what Matthew could accomplish with his 4 beautiful fingers just as they are.

Alyssa and Matthew on 'no thumbs' day.

But some tasks would be more of a struggle.  To see this for ourselves, on Saturday, Alyssa, Jackson, Darren and I all taped our thumb to our index fingers, to live life like Matthew does.  Yes, we understand that Matthew has a bit of an advantage in that he doesn't know life with a thumb and his muscles are more developed for the finger configuration that he has, but it was to remind us why we have scheduled pollicization for Matthew.  Jackson kept his thumb taped about 30 mins, Alyssa about an hour, and Darren and I did it for the majority of the day.  Some tasks weren't any more challenging.  Driving was actually pretty easy.  But some tasks were a bit more challenging, like buttoning a button and opening a jar.  And some tasks were exponentially more difficult.  Cutting the tape to put on the kids' thumbs was near impossible, as was carrying multiple cups to the table. 

After several postponements due to illness, Matthew's first pollicization, where they will move his index finger to a thumb position, is scheduled for this Friday.  Without this surgery, Matthew would be just fine, but our 'no thumbs' day was a reminder of why Matthew will benefit from this surgery.  Just like the relief we felt when we took the tape off, it will make life easier for him.  This surgery is our first real chance to do that.  I'm nervous and scared.  Any surgery is scary, but I'm praying fervently that this is the right choice for Matthew and that it will work out beautifully. 

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!