Surgery Tomorrow

Matthew is scheduled for his 6th surgery tomorrow.  When we left TCH with Matthew when he was 10 days old, this was the surgery we assumed would be first.  But alas, it is the 6th.  Matthew is full of surprises and has had a procedure in the operating room every other month since he was 5 months old. 

5 months- intestines
7 months- heart
9 months- skull
11 months- ear tubes
13 months- nasal repair
15 months- urology

There is a laundry list of activity for tomorrow.  The urologist will bring down Matthew's testes, fix his hernia, scope his urethra to ensure there was no damage when they nicked it inserting a foley catheter in a previous surgery and scope to see if he has a urachus (where his belly button is still attached to his bladder).  If he does have a urachus, they will schedule another surgery at a later date to remove it as that connection often becomes infected and/or cancerous.  When they intubate Matthew, the ENT will scope his throat to see if there are any anomalies (which might have caused his prolonged case of strider).  If they find something in his throat, depending on what it is they will likely keep him overnight to ensure he doesn't fight strider after extubation.  If they don't find anything, we are hopeful we will be able to come home tomorrow. 

With Matthew, we never know.  His history tells us that anything can happen.  You'd think I'd be more comfortable with Matthew going into surgery, it being his 6th time, but I think I get more nervous each time.  Hopefully my worry is for nothing!  Thank you for the continued prayers for our sweet baby Matthew and his doctors! 

Happy Memorial Day

Today we honor all those that serve.  We are so thankful for their service!

In addition to remembering those that gave all, we celebrated what feels like the start of the summer.  And our weekend was saved just in time.  Thankfully Jackson's fever was short lived and Darren and Matthew were able to return to the house on Sunday night, allowing us to continue on with our Monday plans.  After some basic chores around the house this morning, we ate lunch at one of our favorite restaurants (Freebirds), then quiet time (where the kids actually napped!), and later we went over to a friend's house to swim and have dinner with 3 other families.  It was great fun and a great ending to the long weekend!

Happiness is...being in the pool!
We love Matthew's squinty grin.

Thanks to Grandma Jan, swim lessons, and a swim vest,
Jackson is much more confident in the water.
Last year he wouldn't even get in, and this year,
we struggle to get him out!

Alyssa loves being able to swim. 
It is going to be a fun summer!

One Third

Jackson came down with a fever this morning, no other symptoms except general malaise.  It's inconvenient because it is a long weekend, in which we had big plans to be with friends enjoying the hot and sunny weather from a swimming pool where the kids could practice their new swimming skills.  It was going to be great fun and we are all disappointed in the change of plans.

But it is most inconvenient because Matthew is scheduled for surgery for Wednesday.  Matthew can't get sick between now and then.  To avoid Matthew catching the mystery ailment, Darren will be off to his folks house with Matthew while I hold down the fort with poor sick little Jackson and potentially sick (or at least germy) Alyssa. Not exactly how we envisioned our weekend, but it is what it is and we'll do whatever we have to do.

This is the second time Jackson has gotten sick right before a Matthew surgery. Two times isn't a lot, but out of 6 surgeries, that is 1/3rd of the time.  It seems like a lot.  Hopefully it will be short lived and we'll be able to be together very soon!

Happy 15 Months

Happy 15 months to our sweet baby Matthew! 

Although Matthew is still developmentally delayed (about equivalent to a typical 9 month old), I've been awed by his progress these past months.  After every therapy appointment, his therapist comments "he continues to make progress every time I see him." 

Matthew is doing normal baby stuff...moving around, getting into things, playing with toys, interacting with the world, and so on.  Matthew has to work so very hard for things that come so easily to other babies (like crawling), but he puts in the effort and it pays off in time.  It makes it just that much sweeter! 

Matthew at 15 months
Notice the picture frames on the floor,
it is a time-honored Hoy kid tradition to pull the
doggie photos off the bottom shelf.

School Appreciation

It's funny how yearly events help mark the passage of time.  Yesterday was the teacher appreciation luncheon at the preschool.  Last year, I had ended my maternity leave and gone back to work on teacher appreciation day.  This year, I spent the day down at TCH for Matthew's pre-op anesthesia appointment for his surgery next week.  Ah, the difference a year makes!

We changed the kids to this daycare 2 weeks before Matthew was born.  It was the best decision!  The administrators and teachers have been so very supportive of our family these past 15 months.  They cared for Matthew...enduring the time that he screamed when he ate...and have loved on him at every opportunity.  They have nurtured Alyssa and Jackson.  They have supported us through the hard times by allowing us to drop Jackson on his off days when Matthew was in the hospital (and not charging us extra for those days).  I cannot be more thankful for their compassionate care of our children and our family!  And although Alyssa will be going to big school in the Fall, we are glad that Jackson and Matthew have a few more years at this wonderful school.

No Guarantees

No one is guaranteed a tomorrow.  I know this, but I don't worry about my tomorrow, Darren's tomorrow or even Alyssa and Jackson's tomorrows.  I do worry about Matthew's tomorrow.  I do worry that I will lose my sweet baby Matthew.  Not all of the time, but it creeps up on me. 

I don't believe I'm just being paranoid.  With his large chromosome duplication, Matthew might not have ever made it out of the womb.  But he did!  His midgut volvulus malrotated intestines could have lead to him being taken too soon.  But we found it, fixed it and he wasn't! Then if his heart defect hadn't been fixed when it was, his heart could have just stopped.  But it didn't! Then he almost bled out on the table during his skull surgery.  But thanks to the blood of my dad and our dear friend Peter, he didn't! 

Most of the time it isn't in the forefront of my mind, but every so often I'm reminded. Like when I think about the article that I was given when we prepared Matthew for his first surgery (July '10), where the little boy with a similar 4Q duplication doesn't make it to age 2.  And I wonder why the geneticists don't let us know the outcome of the other little boy with Matthew's exact 4Q duplication (did he make it?!?).  Even yesterday I was blog surfing (hitting "next blog" from our blog, it changes daily which blog it takes you to), and the first 5 blogs I read were about children who died.  I wondered if God was trying to prepare me by reading their stories. 

But I mostly worry when I look down at Matthew when he's sweaty, and I'm taken back to September when his heart was failing, and I pray "Please God, keep Matthew's heart strong."  When I notice that Matthew's color looks a little off and I worry about his lone kidney and I pray "Please God, let this just be the lighting.  Please keep Matthew's kidney healthy."  When I prepare for Matthew's next surgery and think back to all of the unexpected issues he's encountered with anesthesia and I pray "Please God, help him wake up and breathe after his procedure."  And even in our everyday, if Matthew sleeps a little longer than usual, I remember that his heart issue (LVH) is one of the most common causes of sudden cardiac death, and I pray "Please God, please protect my sweet baby Matthew."

Always in the back of my mind, I'm fearful of losing Matthew too soon.  I know that he'll be made whole in Heaven, but I'm selfish, I want him here with us.  The silver lining of being fearful is that I'm unbelievably appreciative of today. That fear gives me perspective I wouldn't have had otherwise. The next stage, next day, next hour with my beloved, my kids, my family and my friends is a gift.  And for that I'm thankful!  

Teething

Matthew struggled a little with teething during his first year, but not too much probably because he was recovering from something much worse (intestinal surgery, heart cath, skull surgery) when his teeth made their appearance.  But now is a different story.  His molars that haven't yet poked through are turning my once sweet baby Matthew into a very unhappy and cranky Matthew.  Not fun for any of us. 

Matthew was ear to ear grins at Alyssa's graduation,
unfortunately the good mood didn't last long.

Graduation for Alyssa

Friday was Alyssa's preschool graduation. Here in Cy-Fair, unless they change policy, this will be her only graduation until she graduates high school in 13 years! 

Alyssa looked like such a big girl in her cap and gown, singing loudly with a big smile.  I think we all got a little teary-eyed watching, but it is onward and upward.  She is so proud of herself for what she's accomplished this year (learned to read, do addition, etc) and so excited about going to 'big school' in the Fall.  As are we!   

C2C (Crayons to Computers) is what they call her preschool.

Upstream

I've always worried about having sons.  The breadth of socially acceptable behavior for boys is much narrower than it is for girls.  Alyssa can be a girly-girl, she can be a tom-boy, she can be a mix of both.  All socially acceptable. Jackson can be a boy, just a boy.  No variations for boys.  And even though there is more variation within genders than between them, what I'm hearing lately from Jackson is 'boy' means 'anti-girl'.  I find it a little scary.  The rigid gender role doesn't fit all boys, but it is ingrained early and fighting it is swimming upstream. 

With Jackson in the last few months, we've had lengthy discussions about whether girls could be 'awesome like boys' and argued whether his toys are 'boy toys'.  I know not everyone is going to think like I do...that Tinkerbell, balls, hairdryers, Lightening McQueen,  dolls, and light sabers are for everyone (not just for one gender or the other)....but I just wish all kids could play with whatever they wish without worry.  I do suspect that Jackson uses the 'boys toys' excuse so he won't have to share with his sister, but not only do I want to nip the anti-girl attitude in the bud, but I never want Alyssa to question whether she should play with something because it has been called "a boy toy".  I'm not a fan of having to convince my own kids to break free from what others (especially 4 year old classmates) say...to just be! 

Apparently Jackson thinks it is okay to play with anything,
while he thinks Alyssa should only play with 'girl toys'.

And then to the concerns about gender expectations and societal influences, we add in Matthew.  Unique. Not typical. Different.  Oh, my sweet baby Matthew. 

I want to raise my kids to believe in and act for equality and it feels like I'm fighting major societal forces against that.  I want all my kids (all kids really) to feel comfortable in their own skins, playing with whatever they wish, being their authentic selves and not be concerned with what other people may think. I guess I just want them to be "Free to Be You and Me".

My Happiness

This week, my happiness is...

...listening to Jackson sing the ABC song to calm Matthew before we get them out of their room in the morning.
...watching Alyssa ride her bike.
...seeing Matthew wave "hi".
...date night with my beloved.
...Alyssa excited for her preschool graduation & her friends staying the weekend.
...thinking "I did it" as I hit stop on my watch after a run.
...Alyssa, Jackson and Darren coming through the door after school/work.
...when Jackson is in a good mood.
...girls night out.
...Matthew pulling himself (crawling) across the room.
...getting my textbooks for my Fall classes so I can begin to prepare.
...enjoying time with friends and family.

Dream

I had a dream last night that Matthew started walking.  He was about 3 years old and he just got up and took 10 steps in a row.  It was beautiful! 

And when I told his physical therapist about my dream, she said "I don't see any reason why he won't walk.  It will just take him a while to figure it out, and in Matthew style, he'll learn the hard way."  I hope she's right and I pray my dream becomes reality!

Last Week

Last week was a great week, with the weekend being the cherry on the top.  So much goodness--a new job, Matthew performing a new trick, a positive visit from Matthew's speech therapist, swimming lessons for Aly and Jax, a good run, seeing friends at the race, a great visit with Bryan and Rachel, a wonderful date night with my beloved to a good restaurant and a fantastic performance of Stomp, waking up kid free on Sunday while the kids enjoyed time at Grandma and Grandpa's house (with Uncle Bryan and Ms Rachel), visiting with my folks Sunday afternoon, and beautiful weather. 

Not sure this week can top it, but it has started off well, as we moved Matthew into his crib to sleep in Jackson's room last night with no transition issues.  The hard times in the past have made these good times even sweeter.  We are so very thankful!!

3 Miles for Matthew

Today was the culmination of the last 11 weeks of training...the Girls on the Run 5k.  The 2nd time in my life to run a 5k and the 1st official race I've run.  The weather was perfect today!  I was proud to run with the women from the neighborhood, some friends and my loving family.  Bryan came down from Dallas with his girlfriend, Rachel and his dog, Lucy and they ran with us.  They thankfully pushed Alyssa in the stroller, while Darren pushed the boys allowing me to run unencumbered.  I wasn't what you'd call fast (by any means) but I ran the entire 3.14 miles and finished! 

Darren kept me going with periodic words of encouragement throughout the course.  And when I struggled after mile 2, Matthew let out a joyous scream to remind me who I was running for and I remembered how very hard he had to work to breathe not even a month ago.  He's so strong and I want to be half as strong as he is. 

And while we ran, we saw an inspirational mother and daughter.  The mom was obviously a runner and the daughter (around 11y) was looking at her mom (trying to match her stride and form) and her mom kept pushing her to keep on running.  I hope to be that example for my kids too. 

Today was the culmination of my 11 week journey, but the finish line was just the beginning of a whole new race!

Happy Friday

Today has been a great day! 

The older kids went to their 2nd swim lesson of the season.  As we expected, Alyssa is swimming.  She's able to swim about 1/2 the width of the pool and I expect that by the end of her lessons, she'll be a full on 'swimmer'.  On the other hand, Jackson has the attention span of a gnat and I'm not sure how much he's actually getting out of swimming lessons.  The purpose though is to get Alyssa to be a swimmer and to get Jackson comfortable in the water (he can use floaties this summer) so that we can spend a good amount of our time off this summer in the community pool.  I think these lessons will meet the intended purpose. 

After we got home, Alyssa and Jackson went upstairs to play while Matthew rolled and scooted (crawling) on the floor. All the sudden, I turned around and he was sitting up.  It is the first time he's made the transition from laying down to sitting up by himself.  And he was so very proud! As am I!

Matthew's new trick, transitioning from laying down to sitting.

Special Needs

I was asked the other day if Matthew has special needs.  I realized that although I know he will likely be labeled "special needs", he's really not (at least right now).  He's not on any medications. He takes a bottle and eats baby food.  He sleeps well.  He is interactive.  He plays with toys.  The only difference (besides his physical uniquenesses like his missing thumbs, missing kidney, and malformed right ear) is that he is developmentally delayed.   He does pretty much everything an 8 month old would do, despite the fact that he's 14 months.  

I do wonder if strangers notice that Matthew is unique.  Not that it really matters but I do wonder.  I never want to deny Matthew's uniqueness and if people assume he's a typical kid, it almost feels like it betrays our experience.  It is our life, his life, and I never want him to be anything but proud of who he is and the way God made him.  Matthew is so unique but yet seemingly pretty typical too.  And though a little later than usual, I'm excited about how far and how well he is progressing.  He continues to surprise!

New Opportunity

When I took voluntary separation from Accenture in October, life was crazy busy.  Taking the separation package was intended to make our lives less stressful and less complicated.  And me staying home to better care for our family has served that intended purpose.  In the past few months though, we've realized that life has considerably calmed down. Now we are ready to purposefully add a little complication to our lives. 

I've always said I wanted to teach...someday.  Well, that 'someday' will be this Fall!  I interviewed and received a job offer this morning to teach Sociology part-time at our local community college.  I am beyond thrilled!  I can't wait to get back in the classroom!!  It is the perfect position for me and our family right now.  I feel so lucky to have this opportunity!

Happy Mother's Day

Being a mom is the hardest job I've ever had.  It is full time (plus tons of overtime). I do things I never knew were in the job description (e.g. picking up poop off the bathroom floor, really?!?!).  I have to be patient when I want to yell and go nuts.  I worry constantly whether I'm doing a good enough job.  My bosses can be a little moody, brutally honest, and demanding. 

But it is the greatest job I've ever had.  I'm paid in smiles and hugs.  Jackson's unsolicited "I love you" makes me stop in my tracks.  Matthew's ear to ear grin when I walk in his line of sight warms my heart.  Alyssa grabbing my hand to hold makes me feel like a million bucks.  I am a lucky woman.

And I am doubly lucky that I am friends with and related to amazing moms.  I have learned so much and am so thankful for the examples they serve in my life...helping me be a better mom to my kids.  Thank you!!  Happy Mother's Day to all!

3.1 Miles for Jenn

Today was MD Anderson's yearly Sprint for Life 5k benefiting ovarian cancer research.  We participated in memory of our cousin (and friend) Jenn.  Jenn lost her battle against ovarian cancer in November '09.  She was an amazing friend, cousin, daughter, mom, aunt, niece & wife and is missed by all that knew her. 

Alyssa and Jenn- June '09
They had a beautiful bond.

MD Anderson is next door to Texas Children's, so we took the all too familiar route to the medical center this morning.  As we were pulling into the parking garage, what we call "Jenn's song" came on the radio.  Toby Keith's song "Cryin' for Me" became popular at the time of Jenn's passing and we heard it for the very first time as we pulled into Chicago for Jenn's memorial.  This morning I got goose bumps up and down my arms when I heard it as I hadn't heard it in months.  Too amazing that it was played as we were heading over to walk and run the 3.1 miles for Jenn. 

It was a beautiful (albeit a little humid) morning, perfect for celebrating (and shedding a few tears over) the beautiful person that was Jenn. 

Darren, Joy, Katie, Matthew, Jackson & Alyssa
going 5k for (Aunt) Jenn!

Jackson and Alyssa enjoyed the race food after...
including fruit, muffins, and popsicles.

Darren ran his person best time (24:30)
coming in 7th in his age class out of 27
and was amply surprised to hear that a
16 year old won overall at 16:00.

Do you know the symptoms of ovarian cancer?
-Bloating
-Pelvic or abdominal pain
-Difficulty eating or feeling full quickly
-Urinary symptoms (urgency and frequency)

Be proactive!  See your physician if any symptoms last more than 2 weeks.  Do not just excuse them away (e.g. I've gained weight, etc).   For more information about ovarian cancer visit www.mdanderson.org/diseases/ovarian.  Donate any time to the Blanton-Davis Ovarian Cancer Research Program at www.mdanderson.org/donateovarian.

All's Well

I'm always hesitant to say that things are going well, but life is good right now!  Everyone in the Hoy House is healthy (very nervous to say that!), Matthew is sleeping through the night (12 hours straight), and the older kids are getting along well with each other.  We've been riding bikes, playing outside and just enjoying the good weather together.  I'm so very thankful for the good times!

Feet

In those first few hours after Matthew's birth, we noticed his feet.  They didn't look like typical feet.  They were more rounded, not like a club foot, but more like overly pudgy.  And though a few doctors have mentioned Matthew's feet in passing ("huh, his toes aren't all aligned") no doctor has ever addressed it, even after we've brought it up time and time again.  And now at 14 months, his feet haven't grown out of their pudgy-ness. 

Besides not putting socks on Matthew because his feet are prone to swelling, Darren and I have pretty much ignored this particular Matthew uniqueness.  Until now.  Now that Matthew is putting pressure on his legs and trying to stand, it has become even more evident that this feet aren't typical.  So much so that our physical therapist has recommended braces for his feet.  He'll likely be sized for them within the month.  This is just another unexpected part of Matthew's journey.

Matthew's unique little feet (@ 1 mo)

Matthew loves to suck on his unique little toes
(@ 1 yr)

Habits

I've always heard it takes 6 weeks to make or break a habit.  This Spring I have unintentionally tested that theory.  

First, we gave up restaurants for Lent.  Before Lent, I would typically go out to lunch 1 or 2 times a week and we'd eat out as a family probably 2-3 times on the weekends.  At first, we struggled a bit but as we learned to plan ahead, we realized how much we enjoyed eating at home and how eating out was just a force of habit.  Once we were challenged to do something different, it didn't take long to really get in to it.  We enjoyed cooking out, entertaining at home, being creative, and packing food to go.  Once Lent was over, we made the commitment to not go back to our old ways, but to only eat out occasionally and at places we either wanted to try or really loved.  No more just grabbing something out.  At our first restaurant experience post-Lent, I was a bit disappointed.  Though it was pretty good, and the kids had a good time, I think we could have made something just as good or better at home.  Guess it took the 6 weeks through Lent to break the eating out habit!

Second, I joined a running group to prepare for a 5k.  As I've posted before, I'm not a runner. I vividly remember struggling to run one 12 minute mile when I was in 7th grade to pass P.E. But I know it is an efficient form of exercise and it is the key to managing my weight. I can run, and I do run, but I would never have self-identified as a runner.  Every run during the past 10 weeks I've been a part of this running group, I start out by saying "I'm not sure I can do this" and I end each run with "I can't believe I did it".  We started week 1 by running 1 minute, walking 2 minutes (7 times) and gradually working up.  Today I ran 33 minutes straight. I'm not fast, but I'm running. And I'm committed.  It has taken 10 weeks, but I'm a runner!  Bring on the 5k in 11 days!

The kids did have a good time in the boat (and sand pit) at the restaurant.

Bad Mood

This past weekend was uneventful...pretty much just hung out with friends and dealt with the bad mood being passed around our house like a virus.  Bad moods are so very contagious. 

And lately a lot of them have started with Jackson and his temper.  Our most challenging job as parents of late is teaching Jackson to keep his temper and anger in check.  Not sure why he has so much frustration-- he's only 3!  But heaven forbid we tell him "no" (he'll say "I'm so angry") or if he gets his shoes on the wrong feet or if he has a hard time getting a puzzle piece to fit and on and on. 

And his frustration passes to us, and we pass it right back to him (and Alyssa and Matthew).  Pretty much pollutes our house. 

So, this is our new challenge--get Jackson to manage his mood.  Should be easy, right?  I mean, he's 3 and at 36, I don't always do a very good job of it.  I guess in lieu of getting him to manage his mood, we need to find a way to better deal with it.  It's a lofty goal for a Monday.