Thursday, March 31, 2011

5 Love Languages

Every so often, a book resonates so deeply with me that I have to tell everyone I know about it.  This past year of crisis pushed me to the edge and now that we have moved past the crisis stage, to the stable stage, I looked around me and found that I have neglected many of my closest and best relationships over this past year (or more).  In an effort to renew those relationships (and myself in the process), I pulled a book off my bookshelf that I bought but never read...The 5 Love Languages by Gary Chapman. 

In the book, the author lays out the theory that people speak and feel love in different ways.  There are 5 primary types-- words of affirmation, touch, gifts, quality time and acts of service.  If you and your loved ones are speaking different languages, you may not feel loved (even if the other person thinks they are expressing it).  So, if your primary love language is gifts (you long for little notes, thoughtful expressions of love with trinkets, etc) and your loved one thinks they are showing their love through acts of service (i.e. doing the dishes, folding the laundry, or washing the car), your love tank is likely not getting filled.  When you identify others love language(s), you can speak directly to what matters to them. You act in a loving way that they understand, their love tank gets filled.  

May sound a bit cheesy, but this just makes so much sense to me.  Even looking at Alyssa and Jackson... Alyssa's language is words of affirmation.  She beams when you tell her how much you love her or give her praise.  Jackson's is touch.  He loves to be held, cuddled and tickled.  Knowing this, I know I need to go out of my way to express my love for them in the ways that matter to them.  

I feel like I can be a better spouse, parent and friend when I keep this framework in the forefront of my mind and act accordingly to show the people that I love that I truly love them. And because this book was so influential for me, I want to pass it along to everyone I know.  Here's a link to a summary of the book, the languages and a quiz to find your primary love language.  I'll also be happy to loan out my copy of the book, just drop me a line!

Wednesday, March 30, 2011

Beat the Clock

I am beyond thrilled that Matthew has settled into a sleeping/eating routine.  He's up at 7a, takes a bottle, eats baby food, naps at 9a, up at 11a, takes a bottle, eats baby food, naps at 1:30p, up at 3:30p, takes a bottle, eats baby food, and is down for the night around 7p.  He varies it a little, but that is most days.  I love that he is eating and sleeping well!  The issue I have with this schedule is that it makes me feel like we are playing 'beat the clock'.  Hurry, hurry, we only have 2 hours between sleeps!  And oh goodness, if he doesn't get the naps or they aren't good quality naps, we will pay the price at night!

The past 10 days were delightful...no appointments.  It is the longest stretch we've had since Matthew's birth!  And I knew that when the appointments returned, it would make playing beat the clock even more stressful.  Today Matthew had a therapy appointment at 11:45a and Alyssa an ENT appointment at 1:15p.  Already pushing the limits of the schedule, I was hopeful that the ENT appointment would be brief. 

And seemingly always happens when you are hoping for quick, we encountered a show stopper.   We showed up for the appointment only to find out they think we cancelled the appointment.  Ugh!  So, they had to 'fit her in'...right in the middle of Matthew's afternoon nap.  So, Matthew got ripped from his nap and thrown in the car seat all the while I hoped that we won't have to pay the price for it tonight.  He's not old enough to understand that this is the price of (a) being on a strict schedule and (b) being the 3rd kid.  It's not the first and likely won't be the last time. Sorry my sweet baby Matthew! 

Monday, March 28, 2011

A.M.

Facebook has a new feature called "memorable status updates".  One of my old statuses from about 14 months ago popped up to one of my friends and she sent me a note reminding me of that good day.  My status was:  "potentially found a new daycare for the kiddos, discovered that the car we want really will fit all 3 car seats in the backseat, had a good lunch w/my beloved and just got notification from the library that a new book from one of my favorite authors is ready for me to pick up...great day!!" 

I remember that day well.  It was a great day.  That daycare was a perfect fit.  The car has been one of our favorite purchases for over a year.  I still love that author and spending time with my beloved.  And looking back on it now, it feels like a lifetime ago.  I was a different person then.  It was when I naively assumed the baby growing in my belly would be born with 10 fingers and 10 toes.  It was when I still had a job.  It was when I didn't visit the pediatrician almost weekly. Before I knew the names of every type of pediatric specialist.  Before I could identify heart conditions, renal anomalies, and intestinal abnormalities.  Before I knew the smell of the soap at Texas Children's Hospital.  Before we needed and felt the love and support of our family and friends so intensely. It was before Matthew. 

Life with Matthew is wonderful, but it is very different. I used to mark my life BK (before kids) and AK (after kids), but now it is further delineated as AK-AM.  After Kids/After Matthew.  Many elements look the same... my beloved by my side, Alyssa, Jackson, the house, the dogs, our family and friends but it is a totally different life for me.  My daily life is different. I no longer log on to work at Accenture, instead it is filled with kid-care and doctors/therapy appointments.  My heart and mind are different.  I know first hand now that life isn't always beautiful.  I lost my innocence.  I now worry about the future unlike I ever had before.  I no longer assume 'normality'.  I sympathize with those going through hardships like I never have before. 

I believe that our lives are better, that we are and will be better people because Matthew joined our family but it did rock our world.  His birth drew a line in the sand of my life. 

Sunday, March 27, 2011

Good Week

This past week was a good week.  For the first time in 5 months, we didn't have any appointments. No doctors visits. No therapy appointments.  No specialists to see.  All 3 kids were in their regular routine all week long.  It was great!

And on Wednesday, Matthew decided to add a new trick to his repertoire.  He's putting pressure on his legs for a measurable amount of time, not just letting them buckle after a second or two.  He's enjoying standing while being supported.  He's been spending a lot of time in his exersaucer, standing.  Forward progress.  Very exciting!


And on Friday, I registered Alyssa for Kindergarten.  I had always heard there are 2 types of moms...the 'celebrator' (those that celebrate moving from stage to stage) and the 'mourner' (those that mourn the loss of the previous stage).  I always envisioned myself as a celebrator, but as Alyssa's next stage has come close I began to wonder if I would mourn the loss of this baby/toddler/preschool stage.  As I registered her, I was giddy. I guess I'm a celebrator, as I'm so excited for her next stage.  She is going to LOVE the 'big school' and I can't wait for it too!  

And this weekend has been great.  Friday night was fish fry at church.  The kids always love the grilled cheese and fried fish and enjoy running around outside of church.  It was made even better because we took a family friend, and Jackson adores her. Saturday was a few hours at a local festival.  It was way too warm to be the end of March (85 degrees), and we all got too much sun, but we had fun and did get to eat some crawfish and hot dogs.  There Jackson learned that port-o-potties are 'gross' and Alyssa declared that she was a 'great snow-cone eater'. 

Friday, March 25, 2011

Best It Has Been

Right now is the best it has ever been with Matthew.  He is eating well.  He is napping on a schedule. He is sleeping through the night (most of the time).  He is making good strides in his development.  We get more good news about Matthew than bad.  We are visiting fewer specialists.  We are no longer in crisis mode and we can take a deep breath.  The black cloud has finally departed. This is the best it has ever been!

Matthew doing a typical baby thing, putting toys in his mouth.

Wednesday, March 23, 2011

Uncertain Future

I remember that first night in the NICU, looking at our 3 day old Matthew with a future so uncertain I couldn't even think about it.  Even after a year, after a year of more data points, I still have a hard time imagining what Matthew's future might hold. 

And like that first week, I know in my heart all of our futures are uncertain.  But I trick my mind and imagine what it might be like for Darren, Alyssa, Jackson and I.  But with Matthew I can't really imagine.  There is so much unknown. 

I was thinking about this while I was driving today, and looked behind me to see Matthew's cute cheeks in the rear view mirror, he was holding his bottle with his sweet little hands and I again remembered that this is the moment to be in today. Right now is good.  No need to know what the future holds.  The future will happen when it happens and likely it won't look anything like I imagined anyway.

Tuesday, March 22, 2011

Pop Tabs

Sitting in the library today, I was reminded of an easy, fantastic way we (and all our friends and family) can help the Ronald McDonald House.  Please save the tabs off your aluminum cans.  Just the tabs.  You can get them to us (and we'll deliver to the Ronald McDonald House the next time we volunteer) or you can send them directly to RMH.  Or if you are in Cypress, you can drop them off at the children's desk at the Lonestar Cy-Fair library.  

The Ronald McDonald House Houston uses the money they receive from recycling the tabs (almost $8k/year!) to help serve the families staying at the house.  I just cannot express the depth of our gratitude for the RMH.  Please save your tabs. Thank you!!

Monday, March 21, 2011

Last Weekend

This strep virus put up a good fight, causing Alyssa and I to both visit the doctor on Saturday, but I think it is finally on its way out of the Hoy House.  Yippee!  Better living through chemistry!

Other than the doctors' visits, life has been pretty normal around here.  Fish fry on Friday night at church.  Errands, the park and cooking out on Saturday.  Grocery store on Sunday.  All in all, pretty unremarkable and totally perfect!

Friday, March 18, 2011

Forward Progress

Matthew isn't doing much a typical 12 month old does.  He doesn't pull himself to standing (much less walk), he doesn't eat table food (much less feed himself), and he doesn't babble (much less use words). 

But Matthew is making good forward progress in his development, on his own timetable.  He's sitting unsupported and stable for 5-10 minutes at a time.  He's starting to pull his legs under him to get to hands (or elbows) and knees. While on his belly, he's able to push himself to move backwards. Yesterday he even moved forward a bit by pulling up on his knees and flinging himself forward.  He can hold his bottle from start to finish.  He manipulates things with his hands.  He laughs and smiles and makes joyous noises.
Matthew was motivated by the laundry basket
And he's doing (sometimes annoying) things like typical kids. He likes to stick his tongue out or blow out when we are feeding him baby food.  He reaches over his head to play with the changing table basket when we are changing his diaper.  He loves to play with the television remote which almost always leads to him either dropping it behind the bed or changing the channel.  He bites on the bottle and pulls it out so it makes a popping noise.  I remember being annoyed by these things with Alyssa and Jackson, so it makes me happy to be annoyed by them now with Matthew. 

We rejoice in the forward progress!

Thursday, March 17, 2011

Mystery Solved

4 of the 5 of us have come down with the mystery ailment which has since been identified as strep throat.  Jackson is the only Hoy in our house that was spared.  Alyssa has an ear infection as well.  So, 4 of the 5 of us are on antibotics.  I typically like a strep diagnosis because it responds so well to antibotics.  Hopefully that will be the case this time! 

Happy St. Patrick's Day

Wednesday, March 16, 2011

Mystery Fever

One benefit of Matthew's surgery being postponed (rescheduled for June 1) is that it takes the pressure off trying to keep Matthew well.  This is good because Alyssa ran a mystery fever on Sunday and Monday which went away on Tuesday.  This morning Matthew woke up with it.  Nothing more than a fever with general malaise.  Very strange.  Hopefully his ailment will be short lived as well. 

Tuesday, March 15, 2011

Next Surgery

Matthew's next surgery was scheduled for next Monday.  This is the only surgery we foresee this year!  For this surgery, the urologist will bring down Matthew's testes, fix his hernia, and do a scope to see if his bladder is still connected to his belly button.  The hope is this will be a simple surgery and we should be home a few hours later. 

Unfortunately, when we went in to do the pre-surgical work up by anesthesiology yesterday, Matthew was not approved for surgery at the new west campus of Texas Children's.  Since that is where the surgery was scheduled, it will have to be rescheduled at the main campus.  Matthew's complicated history combined with his scary experience with anesthesia after the heart catheterization made it an easy decision for the anesthesia team.  Although I was jazzed about being at the new hospital, all we want is for Matthew to be in the best place that can handle him, all of his uniquenesses and any possible surprises.  Now we wait for the new surgery date. 

Monday, March 14, 2011

Post Helmet

I am so glad Matthew is out of his helmet.  I've missed cuddling up to him, putting my head on top of his, and kissing his cute little cheeks.  Now he can wear clothing that pulls over his head...no more jammies 24/7.  We were worried he would have trouble adjusting to being out of the helmet, but that worry was for naught.  He's been sleeping through the night (as well as he did with the helmet anyway) and taking his naps during the day without issue.  He even seems to be more careful to not hit his head when he's rolling around on the floor.  And his head now smells like a baby's head and not a teenage boy's foot. 

I hate to do this to him, but I will be putting the helmet back on him when we go for bike rides. I haven't broken the news to him yet, so shhhh. It will be an ugly surprise for him. I figure that helmet is better suited for him and will protect him better than any bicycle helmet we could buy.  Hopefully the excitement of the ride will distract him from the fact he's wearing the helmet again. 

Friday, March 11, 2011

Happy Birthday Darren!

Happy Birthday to my beloved!  Thank you for being a great husband and a fantastic father.  We hope that this next year is a little calmer than the previous.  We love you!

Thursday, March 10, 2011

Giving Back

We have been so very blessed. The outpouring of love and support from our friends, family and all those that we come in contact with this past year is humbling.  We could never repay everyone for all of the warm thoughts and prayers for our sweet baby Matthew and our family, the meals, the visits at the hospital, the offers to take care of Alyssa and Jackson, the donations in Matthew's name to the Ronald McDonald House and the Texas Scottish Rite Hospital, the hugs, smiles, the shows of support, etc.  Words are not enough, but thank you!!

We have been given so much and are thrilled it can be passed along.  First, Brooke, our amazing photographer, is giving another deserving family a free session in honor of Matthew's birthday.  More details on her blog.  She has given us so much, the gift of her time and talent, and she's left us with the most beautiful reminders of our life.  We are so excited that another family will benefit from Matthew's big day!

Additionally, last night, we were able to give a gift that meant so much to us a year ago. I will never forget how relieved I was when I walked into the Ronald McDonald House late one night, stressed and tired, dreading the walk to another hospital to get food, and there was a group serving dinner.  I cried.  That warm meal and smile meant the world to me.  And last night, we were able to give that gift to someone else.  A friend and I served dinner at the Ronald McDonald House at Texas Children's Hospital. The looks on their faces were the same looks we must have had on ours a year ago.  How far we've come!  It felt great to give that gift back.  And when asked why we were there, I explained it was in honor of Matthew's first year, and Matthew is doing great.  He served as a success story.  What a great feeling!

Thank you to Allison who made the cornbread, Kellyann who made the salad, Jennifer M who provided the sodas and Kirsten who made the desserts and helped serve.  All of that, added to the crawfish etouffee was the perfect meal for Ash Wednesday.  It was a great way to honor Matthew's first year.  Thank you!  And thank you to all of our friends and family!  This past year would have been unbearable without you.  We love you!

Tuesday, March 8, 2011

Another Crazy Day

Thankfully the last week has been hectic and fun. The crawfish boil on Saturday, family in from Chicago for the weekend, and the rodeo on Monday.  I didn't fret about today's renal appointment at all. 

And this morning was so crazy.  I left the house with Jackson and Matthew an hour and 15 minutes before the appointment, thinking "no problem".  I was so wrong.  My first mistake is I didn't take the HOV lane (I lost my mind) and it took us all 1:15 to get to the hospital. Houstonians lose their minds in the rain. Then the sign said the garage was full, but the cop outside said it wasn't. After circling the garage, every floor twice, he was proven wrong. I went to valet, who said they were full.  I think the poor parking attendant saw the freaked look on my face, and said he'd take care of us.  Thank you sweet parking attendant!!  We checked in for our appointment 14 minutes late.  At 15 minutes, they automatically reschedule the appointment.  Then we waited an hour to see the doctor.  Whew!

With all of this, I had forgotten that there was anything to worry about until the nurse asked, 'are there any concerns?'  I explained he had protein in his urine at his 1 year appointment, and she said "well, no concern now. Friday's urine was clear." Yippee.  Our nephrologist came in and reviewed the other blood results, all which look good.  The one concern is Matthew's continued high blood pressure.  It's hard on his heart, can lead to and contribute to left ventricle hypertrophy (which he has), and is very hard on his kidney.  His type of kidney (ectopic fused) is known to produce hormones that contribute to high blood pressure.  Once our nephrologist reviews the most recent echo, he'll decide whether he believes Matthew should be on meds to control his blood pressure.  If he decides against meds, we'll have to keep close watch on Matthew's blood pressure and then reassess at the next appointment (with a new nephrologist).

Sadly, our nephrologist is leaving TCH.  It's a good move for him, but a sad move for us. He's been so supportive and caring since he first saw Matthew a year ago.  He sees Matthew as a unique and interesting kid. He never dismisses something by saying "it could just be part of his syndrome."  We will miss him.

After finishing up with renal, we had to RUN over to Dr. T's office which is at a different hospital.  Matthew had his final head shots to compare to pre-surgery and then we met with Dr. T who was thrilled with Matthew's recovery and the shape of his head.  No more head appointments for a year. Yipee!

Matthew and Jackson were tired from the rodeo last night, but they soldiered through the appointments well enough.  Finally Matthew was done with appointments for the day and Jackson and I headed to lunch.  At lunch, I looked down and Matthew was covered in poop.  Fantastic.  This just isn't our day.  So I looked for a bathroom with a changing table.  I assumed a CHILDREN'S hospital would have a bathroom with a changing table, but I was wrong.  Ugh!  But thankfully, after getting everyone all cleaned up and all that, the ride home was quiet and the rest of the afternoon was uneventful. 

Monday, March 7, 2011

All 3 kids

Although I blog most often about Matthew, our life really revolves around all 3 of our kids.  We are very lucky!

Alyssa is still loving preschool and is ready for kindergarten in the fall.  She's learning to read, which thrills her to no end because she's been wanting to read on her own since she was 3.  She's working on a group of books about two ducks named Goosie and Gertie.  She's also learning to do single digit addition and we are often quizzed to make sure we know how to add (did you know 5+2, 6+1, 7+0, and 4+3 all equal 7?!?).  She is quiet, but she hears EVERYTHING.  We have learned we have to be careful what we say, as there is a chance it was caught and will be repeated when we least expect it.  Alyssa is 5 going on 15 and loves to hang around her older cousins.
 
Alyssa 5 going on 15

Jackson doesn't really like preschool, and when asked why, he'll respond "my friends bother me".  Goodness.  I suspect it might be because he has to sit down for prolonged periods of time.  He loves to run.  He'll often look to me before taking off in a sprint to say "I'm fast!" and just yesterday he told Aunt Carol "I wish I could fly."  And though that makes it sound like he's adventurous, he's not a fan of bounce houses because "they are bumpy".  He's so sweet and still loves to cuddle (when he's not running).  Alyssa is his best friend.

Our Jack-in-the-box
I probably can't say anything about Matthew that isn't documented on the blog already, but he's just got the calmest disposition.  He loves to be around his 'peeps' and is thrilled beyond belief when you sing to him and clap.  He loves to be held and loved on.  

Matthew with his Godmother (Aunt Carol)

Sunday, March 6, 2011

Celebrating Matthew

This past week we've spent a lot of time celebrating Matthew's first year...that he made it, that we made it! 


A week ago, on his actual birthday, we had planned a lunch at one of our favorite burger joints, then cupcakes at the house with us 5, my folks and Darren's folks and after that family photos with our fabulous photographer to mark this big day.  The day did not go as planned. I should have known that would be the way we'd celebrate Matthew's birthday, because that is so very Matthew!  My folks were sick, Darren's step-dad had to go on a business trip, and Matthew decided to take very late naps that interrupted the lunch and made him grumpy for the pictures.  With all of that though, it was still a beautiful day!  And even though he was a little grumpy for the photos, Brooke did an amazing job capturing the happiness of the day.  More pictures from our happy day can be found on her blog.  Thank you Brooke! 


Yesterday was our annual crawfish boil.  Our family and friends have been unbelievably supportive during this past year, and although we can never repay the kindness, we wanted to celebrate this past year with as many as could make it.  The day started out sketchy, with wind and rain and cool temperatures. But a few minutes before the start of the boil, the sun came out and the weather was perfect!  It was a fantastic time celebrating with old friends, new friends, some friends we haven't seen in years, and family that came all the way from Chicago! Besides being a good time, it is always interesting to look around and remember how this event has evolved, just as our life has.  Years ago it was mostly adults and a few kids, now it's a kid party...lots of kids and lots of fun! Kind of like our life now!  The perfect way to celebrate our sweet baby Matthew's first year!

One of the indicators that the boil is now a kids party,
shoes in front of the bounce house.

Friday, March 4, 2011

RIP Uncle Mark

Every one should have a fun uncle when they are young.  The uncle that tells jokes, does things that your parents wouldn't do, and plays with you on your level.  Darren had his Uncle Bill.  My kids have Uncle Bryan.  And I had Uncle Mark.  He would ride the roller coasters at 6 Flags with me when my parents wouldn't.  He loved live music and drinking beer.  He was quiet and sweet, but a fun loving guy. 

My Uncle Mark has battled frontotemperal dementia for the past few years and, at 58 years young, lost his battle quietly on Wednesday night.  He will be greatly missed by my Aunt Rene who lost her beloved husband, my cousin Alex who lost his dad, my grandmother who just lost her twin sister and now her baby boy, my granddad who lost his son, my dad and Aunt Ricki who lost their baby brother, my Aunt Sherri who lost her son's father, and me who lost my fun Uncle Mark.  Though I'm sure they are dancing in Heaven welcoming Mark, we mourn here on earth.  Please keep Mark's family in your thoughts and prayers. 

Rest in peace Uncle Mark!  We love you!

Rene and Mark on their wedding day (2005)

My Granddad, Dad, Uncle Mark, Aunt Ricki and Grandma
Celebrating my grandparents' 50th wedding anniversary (~1991)

Mark with baby Alex (~1987)

Thursday, March 3, 2011

Helmet Countdown Wk 8

Helmet Countdown- 8 weeks down, 0 weeks to go!!

Last night, Jackson and Alyssa celebrated Matthew's last night in the helmet by knocking on it for the last time.  I'm so used to him in the helmet now, how it frames his chubby little cheeks, I think it will take a few days to get used to him without it.  
Last night in the helmet
But now he's done with the helmet! The exit scan was this afternoon. It almost didn't happen. Our orthopedist had an emergency but at the last minute he got us in for the scan. Matthew's head is totally in proportion. Yippee!  No more helmet!!
Helmet Free!

Wednesday, March 2, 2011

Run

I wish I was a runner. I'm really not, but I pretend to be every so often.  Right now I'm doing the couch to 5k running program (again) with a group of women from my neighborhood. Maybe if I pretend I'm a runner, sooner or later I will be one.  Fake it till I make it. 

Anyway, I was out for a run/walk with Matthew earlier this week.  As I walked, I looked down at Matthew and it struck me that we don't know if Matthew will ever be able to run.  We have no idea if he'll ever walk.  I know he's no where close right now.  For a moment I was sad beyond belief, but just as the wind blew, I felt appreciation wash over me.  I may not be a 'runner' but I can run and for that I should be thankful.  And because I can run, I should with a joyful heart...for all the people who wish they could but can't. 

Tuesday, March 1, 2011

Pit in Stomach

I'm often asked how glad we are that all the big surgeries are behind us and if we can finally take a deep breath.  My response is that I'm cautiously optimistic but think that it might be naive to believe we won't have any more surprises when it comes to Matthew. 

I haven't had a pit in the bottom of my stomach in a while.  It's been a few months since I've woken up in the middle of the night worrying about Matthew and his future.  I realized that as I was walking with Matthew around the neighborhood yesterday.  I then thought to myself that I should have waited to hear about the labs done at his 1 year checkup before I posted anything.  Nah, I thought, everything will come back normal.  Matthew has been doing so well!

When I got back from the walk, there was a message from the nurse asking for me to call her back.  Thinking to myself-- Why don't they just leave a message to say all is okay? If it was something bad, Dr. W would have called. What could it be?  I did this back and forth with myself for the 20 minutes I had to wait for the nurse to return my return phone call.

Matthew's CBC was normal, but he is leaking protein into his urine.  The pit in the bottom of my stomach is back. Thankfully we have our 6 month follow up with renal next Tuesday (3/8) where the nephrologist will run further tests and help us to figure out what is going on.   Matthew only has 1 kidney and we need to make sure it stays healthy and well.  Protein in the urine can indicate a host of things ranging from minor to serious, all of which are not something you want when you only have 1 kidney.  Our best hope is that it is nothing at all, a random event or false reading.

The roller coaster is tiring, we've been up for a while now and this curve took me off guard.  We are fervently praying this result is an anomaly. Every one has been so supportive and cared and prayed for our sweet baby Matthew for this past year and given us so much, but please continue to keep sweet baby Matthew and his one kidney in your thoughts and prayers.  We very much appreciate it and you!