Wednesday, May 30, 2012

Alyssa's Last Day Kinder

Today is Alyssa's last day of kindergarten.  And in very Alyssa fashion, though she loves school, she isn't sad that today is the last day.  She is looking forward to summer and to being a big 1st grader in the Fall.  

This year has been fantastic for her.  I have loved watching her become even more mature, even more independent, and even more knowledgeable.  Every day, she rode to school, parked her bike in the rack, and then walked into the school without looking back (save one week mid year).  What was in front of her was more important than what was behind her.  

Alyssa has always liked this book, and it reminds me so much of her.
Riding to school with Alyssa and her little friend and (from across the street) watching them go into school together was a highlight of every day for me.  What a great year!  Can't wait to see what the next one holds for her and us!

Monday, May 28, 2012

On the Move

Matthew is on the move and fast!  He's got his brother, sister and friends to keep up with!


On the scooter:

Sunday, May 27, 2012

Life is Good

Happiness is--

A water gun fight in the park with friends
Mommy's sunglasses
Alyssa's Barbie sunglasses
Pretending that your puzzle is a swimming pool
Reading a Lego magazine with Daddy
Holding hands with a person you love

Saturday, May 26, 2012


A few months ago, I commented that the learning curve with Matthew has been steep, and we've learned a lot in the past almost 27 months.  That doesn't mean that we don't have a bunch more to learn.  

I've been starting to think about Matthew's transition from Early Childhood Intervention (ECI) into the school system, which happens when he turns 3.  In preparation for this, I've been trying to get more knowledgeable about special education law, procedures, etc.  Our physical therapist recommended a wonderful website, but even I, the person who wants to know everything right now, am overwhelmed by the amount of information I have yet to learn.  

Just wow!  I've got a lot of reading to do.

Friday, May 25, 2012


In the last week, we've been pretty jazzed because Matthew has been adding back some sounds and vocalization now that he's mastered walking.  Still no words, but he is starting to make noise again.  

Matthew has also made a pretty big cognitive jump lately.  He will answer yes or no questions by shaking or nodding his head.  If he wants something that has been placed out of his reach, he will go get the step stool so that he can reach said item.  When I ask him if he wants to read a book, he nods his head, and goes to get a book.  Too great!

So, I was thinking that therapy this morning (focusing on early language development and cognition) would be a pretty happy occasion.  Instead, our therapist was even more perplexed and concerned about Matthew's lack of verbal expressive language.  She said this is the largest gap she has seen between cognition/receptive language and expressive language.  He understands that words are symbols that mean something.  He understands the words.  He wants to communicate.  He picks up sign language.  But he doesn't verbally talk.  She is concerned that there might be something structurally unique about Matthew interfering with his verbal communication.  He seems to have the will, but not the way. 

My gut tells me that there is just a cognitive switch that needs to get flipped (and when it does I almost expect that he'll speak in full sentences in no time), but I guess there could be something more.  Matthew is unique.  And as we have always noted, with Matthew being 1 of 2 in the world, we don't ever know whether he will do something until he actually does it. No one can tell us he will talk, but no one can tell us he won't either.

This appointment knocked the wind out of my sails this morning, but it has also kicked me in the rear.  I had been procrastinating getting ready for my summer sign language class, but now I've been re-motivated.  If Matthew's only mode of expressive language is sign, Matthew's mommy needs to learn more sign. 

Taking Leia to the vet, Matthew loved holding Leia's leash and signing 'dog' at every dog bark.

Thursday, May 24, 2012

Red Shirt

Jackson's self portrait
Tomorrow is Jackson's last day of preschool.  He has made great progress over this school year, since moving him to his new school.  When he transferred to this school in October, he barely recognized any letters or numbers and could not write his name, trace letters, or even hold a pencil correctly.  Thankfully, now he can do those things.  

Jackson will turn 5 this summer, making him eligible for public kindergarten next school year, but we are planning to 'red shirt' him (hold him back).  This decision seems to be a heated topic of debate on facebook and mommy blogs-- with some of the more controversial statements being that people who hold their children (primarily boys) back are just doing it so that their child will be good in sports.  Believe me, if you'd seen Jackson play tball, you would know that sports are not the reason we are holding him back.  Jackson's strengths lie elsewhere.

The 'red shirt' decision was an easy decision for us to make.  Our job is to set our kids up for success. We believe that Jackson could get through it but would struggle in public kindergarten next year.  He isn't a huge fan of school, and we definitely don't want to make it worse by him having to struggle with it. 

We are giving him this gift of a year to mature, develop, and learn.  In the Fall, Jackson will be in private kindergarten in the school he was at this year, in hopes that he will be able to hit the ground running when he goes to public school kindergarten the following Fall (2013).  And if Jackson seems overly ready after this next year, we always have the option of placing him in first grade instead of kinder.  We will just have to wait to see how the year goes. For now, we are thankful that this past year has turned out so well!
In October, Jackson couldn't even trace over the letters his teacher wrote.

By April, Jackson could write his name independently, follow directions, and write letters on his own.  Vast improvement!

Wednesday, May 23, 2012

Our Lefty

Over the last few months, Matthew has made it known that he is going to be left hand dominate.  When we hand him a fork, spoon, or pencil, we always hand it to his right hand (as everyone in our family is right handed).  Matthew grabs it in his right and moves it to his left.  

His occupational therapist was the first one to say it out loud-- Matthew seems to be left handed.  My response-- of course he is.  It is the path less taken (with about 10% of the population left handed), and that is the path Matthew seems to prefer.  So, since we'll have to buy him new scissors anyway, I thought I would just buy him the pair that you can use with your fingers and palm (spring loaded, so no thumb required).  That should make that particular task a little less difficult for him.
Our little lefty...scribbling just fine with his left hand and no thumb.

Saturday, May 19, 2012

Every Day

This past week was wonderful.  It was the every day, simple things that made the week "normal", yet amazing.  Alyssa riding her bike to school.  Jackson playing with his Legos.  Matthew and Jackson playing hide-and-seek.  Tickle fights with all 3 kids.  Matthew toddling around with his toothbrushes.

On Friday, when Alyssa and Jackson were at school and Darren was at work, Matthew crawled up next to me on the couch to watch the last few minutes of the Today show.  Usher was performing and Matthew was clapping along. (Who knew Matthew was an Usher fan?) Then when the commercial came on for pet meds, Matthew patted his leg to sign 'dog'.  After that, we worked on 'over' and 'under' by putting a book on top of our dog (Padme) and under the dog.  After several repetitions, I asked Matthew to put the book under the dog-- and he did!  Nothing he's doing is really remarkable, but yet it completely amazes me.  Like when he spills milk and goes to get a rag to clean it up without being asked, or when he wants to have his belly tickled and he lifts his shirt and makes a blowing sound, or when he rides the scooters around the house, or (still) when he walks.  Just amazing.

The every day is perfect and beautiful!  I appreciate all of these moments and am so thankful for this wonderful week!

Alyssa on her way to school.
This makes me smile. 
Jackson likes taking pictures of himself and Matthew on my iTouch.

Thursday, May 17, 2012


It seems like it has been a long time since Matthew has seen a specialist.  As we were heading to his urology appointment last week, I was struck how long it has been since I prayed my 'on the way to the specialist' prayer.  It goes something like this-- "Please God, let the news be good and free from surprise".  This month is full of follow up appointments with specialists.  So far the news has been good (with an asterisk in each area).   

Urology- All is well 1 year post-op.  Also, his kidney is growing, but at the low end of normal range.  Just something we'll need to keep an eye on at his next appointment in a year.

GI- Matthew is growing, but gaining weight at a slower pace than expected, even for Matthew's unique growth curve.  He is off the gastroperisis meds, which have lost much of their effectiveness.  The alternative meds are a bit scary, so we are waiting to see if we can address his slow weight gain with higher concentrated calories.  We have to be careful with fats and oils as they may make the gastroperisis worse, but we are adding additional calories wherever possible.  Follow up in September, with hopes of a pound or 2 weight gain.

Cardiology-  According to his cardiologist, Matthew is "doing great!"  I was worried before the appointment, not afraid of what we would hear as we anticipated that the news would be good, but dreading having Matthew stay still for his echocardiogram.  Thankfully he did beautifully, and the echo showed no residual shunting from the PDA, his biscupid AO valve is working fine, but he does have a dilated aortic root.  Just something else to watch at our yearly appointment.

Additionally this month, Matthew has a follow up appointment with neurology.  And we are hoping to get referrals for immunology (to address the potential lymphedema in his feet) and orthopedics (to address an issue raised by his PT- potential torsion of his legs).  After that, we should be caught up with all of his specialists.  Whew!

Wednesday, May 16, 2012

Locked Out

I was planning to take Matthew on a bike ride this morning, so I went out to the garage to hook up the bike trailer.  When I turned the door handle to come back into the house to grab Matthew to go, the door was locked.  Oops.  Matthew must have locked it as he was jiggling the handle.  I checked all the doors around the house-- locked.  No emergency key.  My neighbor with a key was at work.  I was locked out and Matthew was locked in.  Thankfully my cell phone was in the car, which was still unlocked.  I called a friend with a key, and she was out and about away from the neighborhood.  Finally, I sucked it up and called Darren to come home to let me in.  He laughed, hard.

Matthew was perfectly fine with me being locked out and him being locked in. He roamed around the house a bit and would come to the door and knock on it every few minutes. I watched him from our front door (all glass) and he was happy as can be.  We played peek-a-boo on either side of the door. He found a toothbrush to chew on (his new favorite thing to do).  We took turns knocking on the door.  He played in the shoe bins in the front hallway.  Really not much changed for him while I was locked out.

About 20 minutes after the call to Darren, he pulled up, handed me his keys and I was in.  Matthew didn't blink an eye.  Though he seems to enjoy it, I guess he didn't want to go on the bike ride today.

My view from the outside looking in.

Tuesday, May 15, 2012


One dark night, as I sat next to Matthew's bed in the ICU, I planned out his funeral.  It sounds completely morbid now, and until this last week, I didn't even tell Darren I had done it.  But in those scary moments, I was truly worried that I needed at least that tentative plan in my head, if the worst case scenario should transpire.  Thanks be to God that Matthew lived and he thrives!

Part of the plan that thankfully didn't need to be executed was to celebrate Matthew at one of our favorite family friendly spots-- Clays.  We've been to Clays many times since that scary night in the ICU and each time I'm so thankful that Matthew is there with us.  We went to Clays last week for Alyssa's end of season softball party and the contrast was so very remarkable, I couldn't help but to cry.  To see Matthew walking all over the property, trying to kiss the horses, excited about the peacock--it was the greatest.  Matthew is doing amazingly well, and the contrast between that dark night and this bright day is dramatic and beautiful.  

Mattie trying to kiss the horse.

Matthew must have walked the grounds 2 dozen times plus. 

Monday, May 14, 2012


I haven't called to reschedule Matthew's hand surgery.  We do believe that this surgery would make life easier for Matthew, but I was spooked at his near surgery in April.  I wish I had a crystal ball and knew what the right decision would be for the best outcome.  Is the benefit worth the risk? 

I've signed a half dozen release forms for surgery. I know that there is inherent risk with any surgery--- and know that these forms list out all the possibilities. I've always glossed over the risks, thinking "oh, those are remote and won't happen to Matthew."  I had done the same as we were preparing for his hand surgery, but now I pause.  Those risks are listed because they have happened to someone, and on some of those risks, Matthew has been that someone.  Four out of his six previous surgeries have not gone as planned.  Not good odds.

Then there was the little boy in the room with Matthew with a staph infection.  Saying nothing of the fact that there is no way that Matthew should have been in a room with someone with an active staph infection, especially pre-op, it scarred me.  Staph infections are scary things and are rampant in hospitals. If they are antibiotic resistant, Matthew could lose a finger, his hand, an arm or his life.  Way scary.

As well, all of Matthew's life, he has either had a cold, been recovering from a cold, or just about to get a cold.  The longest he's ever gone without some sort of ailment is 3.5 weeks.  We know the risks going under anesthesia with a cold, and they are exacerbated by Matthew's throat anomalies.  I have seen a machine breathing for Matthew once, and I have to say I'd prefer not to ever see it again.

Finally, the nurse spent an hour detailing out how very important it will be post-op to keep Matthew's full arm cast dry and free from sweat (wet/sweat=bacteria=infection).  Thinking through the logistics of keeping a VERY active 2 year old with a hand to shoulder cast from sweating (in Houston) seemed like a herculean task, but thinking about keeping him from all water for 6 weeks (including locking him out of our bathrooms completely, and everyone having to drink from from cups with lids) seemed a bit daunting.  

Do I think that Matthew must have this surgery?  The hand surgeon asked me the same thing, and my answer is very simply "No".  Matthew is amazing with his 4 fingers in the configuration that he was born with.  And though it may be more difficult for him to master his fine motor skills, like holding a pencil and cutting with scissors, I have absolutely no doubt in my mind that he would figure it out in time.  He is tenacious.  God gave him the best personality for the uniquenesses that he possesses.

So, why would we have the surgery?  Because it would make it easier for him to do every day things-- opening a jar, holding a pencil, turning a key.  We had always planned for this surgery for now because (1) it was after all of his major surgeries and (2) we wanted him to have the optimal thumb position as he started holding a pencil and getting ready for school.  But those are our reasonings, medically Matthew can have this surgery at any time from now on.  They wanted him to be at least 2 years old because hands double in size from birth to two and then again from two to adulthood, meaning the fastest growth period for the hands is zero to two. 

So, the plan for now is that we will wait through the summer and determine if we want to reschedule for the Fall.  And if we decide to wait further, we can do that too.  Maybe we wait till Matthew's immune system is a bit more robust and when he can understand/work with us on keeping his cast clean and dry.  Maybe through waiting, we decide against surgery because we are able to see how Matthew progresses with his 4 finger/no thumb configuration.  And if we decide not to go through with the surgery at all, Matthew may one day make the decision on his own to go through with it.  Thankfully there are options, I just wish I had a crystal ball and knew the right one!

Sunday, May 13, 2012

Happy Mother's Day

Today, as we've celebrated mother's day visiting with our mothers and my grandmother, I've been thinking about how much I've learned from being mom to Alyssa, Jackson and Matthew.  The list is long, but I think the sum is that Alyssa taught me to be a mom, Jackson taught me to parent, and Matthew taught me to be an advocate. I am beyond honored to be 'mommy' to these 3 great kids.

Darren and I are both very lucky to have terrific moms, who are now fantastic grandmothers too.  We feel so blessed to have them in our lives. And we are doubly blessed that in addition to them, we have so many wonderful, caring women in our lives, who make our lives and those of our kids richer-- our aunts, our friends, our grandmothers, our cousins.  Happy mother's day to all!

Saturday, May 12, 2012

Annual Crawfish Boil

Today was our annual crawfish boil.  We love spending the day cooking up mudbugs and visiting with friends old and new.  Every year our only regret is that there just doesn't seem to be enough time to fully catch up with everyone.  

We've enjoyed looking back at our boils over the years-- first as a dating couple, then as a married couple, then as an expecting couple, then as new parents, and now as a bit more seasoned parents.  We announced our engagement at a crawfish boil.  We revealed we were expecting Alyssa at a crawfish boil.  We celebrated Matthew's first birthday at a crawfish boil.  It is our way of celebrating the goodness of life, year after year.  

And this year, we had a lot to celebrate-- life is so good!  We missed those that couldn't make it, and are so thankful that those that could joined us to celebrate the goodness! 

70 pounds of crawfish, before the boil

In lieu of a bounce house this year, we had tball.
It was great fun, but caused one kid to go for 3 stitches. 

Wednesday, May 9, 2012

More Smiles

Making me smile this week--

-Matthew raising his shirt to show us his baby belly, and belly laughing when we give him zerberts on it. 
-Alyssa and Jackson working on a word search together.
-Matthew riding the push and plasma cars through the house, like toddler Jackson used to do.
-My last week of school.  I love it almost as much as my students do.
-Jackson making it almost 6 days straight without a time out.
-Throwing the softball with Alyssa while waiting for Jackson to bat at his tball game while Matthew played in the grass nearby.
-Alyssa dancing with Matthew while Jackson joyously jumped around.
-Matthew toddling around everywhere-- Costco, BW3s, from the car to the house, Jackson's tball game, Alyssa's softball game, the Sprint for Life, all around the house, all around the garage, and everywhere else we've gone.
-Having dinner with my folks.
-My Grandmother looking stronger.
-Having lunch with Alyssa at school. (A highlight to the end of my semester.)
-Having lunch with a friend.  (Another highlight to the end of my semester.)
-Spending quiet nights with my beloved.
-Making plans for the summer break.  Looking forward to it!

Matthew on the plasma car.
Alyssa helping Jackson with the word search.

Tuesday, May 8, 2012

So Close

Several months ago, we bought a Star Wars light up lightsaber as a carrot for Jackson.  One week of good behavior (no time outs, no issues controlling emotions) earns him the much coveted light saber.  It has safely been tucked away in the closet.  Every so often, Jackson opens the door, and stares at it a minute, likely dreaming of the day when he'll get to take it out of the box.  

In the last few months, Jackson had one good stretch of 4 days, and then just a couple of days here, and a couple of days there.  There were a few days when I wondered if he'd get the lightsaber before he went to college.  Any time out or trouble managing his emotions starts him back at day 0.  Today he was at day 6.  He was so close.  He just needed to make it through tonight and tomorrow and the light saber would be in his hands on Thursday morning.  

But it just wasn't meant to be. His infraction wasn't even worth it-- he asked me if he could look at his new books (that were bought to read over the summer), and when I said no, he said okay (good), but then sometime this afternoon he took them out of the cabinet after I said no (not good).  So, today is day 0.  I think I'm almost as disappointed as he is...almost.  Hopefully tomorrow will be day 1, yet again.  

Sunday, May 6, 2012

Softball Season Over

Yesterday was Alyssa's last softball game of the season.  The game itself wasn't great-- as a bad call by the umpire changed the course of the game, but the season overall was fantastic. The girls seemed to all have a good time, they all improved over the season, and they enjoyed spending time together. 
Asking Alyssa now, I don't think she'd want to do it again, but I think she is a little burnt out from the last 2 months of practice and games.  Additionally, it is getting pretty warm here in Houston and as she has told me many times, her uniform is hot.  I do expect that when we ask her in the Fall that her answer may change.  

Saturday, May 5, 2012

Sprint for Life

Today, we celebrated our dear cousin and friend, Jennifer Johnson, by walking and running in the 15th annual Sprint for Life that benefits MD Anderson's ovarian cancer research center. This race is always bitter sweet, as we love to honor Jenn's memory but hate that she isn't here with us.  
Today, I ran faster than I ever have in a 5k before--32:18.  I had an angel pushing me.  Thank you, Jenn, for helping me tick off another bucket list item for this year. We miss you!
The sign on my back.  Jenn holding baby 'Aysa' as her Kyle used to say.

Please remember the signs and symptoms of ovarian cancer, if not for you, maybe for a friend, a mother, a daughter, or a niece.  The symptoms of ovarian cancer whisper-- please listen.

Friday, May 4, 2012

Our Matthew Worry

When it comes to Matthew, I'm the worrier parent.  It freaks me out a bit when Darren gets worried about Matthew.  For some time, I've been fretting about Matthew's lack of verbal speech, but it scared me a bit that now both Darren and I are worried that Matthew may not talk.  

Matthew had what we thought were a few words (mom and bye), but those vanished when he started concentrating on walking.  The sounds he was making have pretty much gone away too.  He does use signs (9 to date), and he does communicate with sound, but not really the sounds that make up words. Darren and I both commented this morning that there is a possibility that Matthew may not talk.  Goodness, that is scary.  Matthew may not talk.  

We are very happy that Matthew is using sign, and will be fine with him continuing to do so.  But it will be a challenge for him.  First because he has normal hearing, it will be more difficult to get Matthew the services to learn ASL.  And because he hears, to communicate he'll have to translate from spoken English to American Sign Language.  I've heard it compared to hearing in English and then speaking in Japanese.  And, to add to the concerns, with Matthew only having 4 fingers, no matter the configuration (thumb/3 fingers or no thumb/4 fingers), he'll have what is considered a speech impediment when speaking through sign. 

We know that whatever comes Matthew's way, he will persevere and figure it out.  But we still worry and pray that in time he'll talk in spoken word.  Thank you for praying too. 

Thursday, May 3, 2012

In Honor

As I stood in the corral at the 10k on Saturday waiting for the gun to go off to start the race, I was overcome with emotion and tears fell down my cheeks.  I'm sure that the other participants around me thought I was nuts.  

When I started running last year, it was the day before Matthew's first birthday.  After that first year, full of surgeries and close calls, I've dedicated my runs to Matthew.  But I've wondered (and feared) if some day I would be running in memory of him instead of in honor of him.  A year ago, that seemed like a real possibility.  But now, I can't even imagine.  He is so strong, so vibrant, and so amazing.

I can't really see the scary stuff in the rear view mirror anymore. I know it is back there, but it has been a year since Matthew's last overnight hospital stay and almost a year since his last surgery.  He turned the corner and he has been on a nice straight away for quite some time. 

I am very aware that Matthew is still considered "medically fragile" and there might be a day where he turns a sharp corner and falls off a cliff.  But right now, I just can't see it.  I pray for a long, open road for Matthew's future journey. And last Saturday, and every day, I am beyond thankful that I run in honor of my sweet (and strong) baby Matthew.

Wednesday, May 2, 2012

Shift Change

Matthew is everywhere and into everything.  It is wonderful!  Though, it is keeping Matthew's guardian angels on high alert.  Just since I started writing this post, he's closed himself in the bathroom, thrown away my hairbrush, toddled into the kitchen, grabbed some rags from the cabinet, wiped down the table and chairs, has left one rag on the floor and is carrying the other with him as he tries to climb the end table in the living room.  Whew!  (Oh, and I missed that he threw away Jackson's sandal in the kitchen trash in that 5 minute span too.)

I guess his guardian angels had a shift change or blinked.
What surprises me most is that this is the only boo-boo, for now. 

Tuesday, May 1, 2012

Spring Program

The spring program at Jackson's preschool consisted of a dozen 4 and 5 year olds with limited attention spans singing songs about going to the zoo.  It was too cute.