Happy 7th Birthday to the Hoy House!

To celebrate our 7th year as the Hoy House, we visited the Downtown Aquarium on Thursday. Alyssa and Jackson have gone before with their Aunt Marilyn and Uncle Steve, and since they enjoyed it so much, we thought it would be fun to have dinner there for our family birthday.  It was fantastic and we didn't even get a chance to do all of the activities.  The tank in the restaurant was amazing.  The kids were enamored with the fish that was as big as Darren and the sting rays that had spots like a cheetah.  The food was good, and we all enjoyed the cheesecake and raspberry sherbert dessert (even Matthew)!  And to end the evening, Alyssa, Jackson and Darren took a ride on the ferris wheel.  Great fun!

The visit to the aquarium was made richer with the kids affection for Finding Nemo.

What a difference a year has made.
Last year, Mattie slept through the dinner, and this year, definitely not!

Big smiles all around!

Jackson ate butter directly from the dish.

The little face you see is Jackson peering down at Matthew and me.

Hand Surgery Postponed

Matthew has to be healthy for 2 week before hand surgery. We knew this would be a challenge, especially in winter.  Matthew hasn't been well for 2 weeks in a row since mid-October. Exactly 2 weeks before the January 6th surgery date, Matthew started coming down with a cold...and then a stomach bug...and then an eye infection...and then an ear infection...and finally a sinus infection.  He hasn't been able to shake it in the week since.  Hand surgery is an elective surgery and thankfully is not time sensitive.  So, we have postponed surgery and our pediatrician is working with us on a medication plan to hopefully get and keep Matthew well.  The new date is February 3 and we pray he will get and stay well for it!  

Matthew's beautiful 4 fingered hands.

Random Holiday Bits

When the kids would ask about Matthew's lack of thumbs, we would say "that is how God made him."  On Christmas morning, sitting down at breakfast, Alyssa asked me "why did God give Matthew only 4 fingers when everyone else has 5?" My response--"I don't know, honey. I don't know.", but Darren's was much better--"That must be all he needs".

Alyssa went around Christmas Eve and Christmas day singing "All I want for Christmas is my 3 front teeth".  She lost her 3rd tooth on Christmas Eve Eve.  She has a few more loose, but if she loses anymore, she'll be able to stick her tongue out without opening her teeth.

Jackson has been all about Christmas.  Every day for the past 2 weeks he has gone around wishing us a Merry Christmas.  He only wants to watch Christmas shows (Prep and Landing I and II being the favorites) and he loves turning on the Christmas tree lights.  He might be a little morose when we put away the Christmas decorations in a few days.

Matthew loves music.  Lately, he will crawl over to the piano, pull up on the piano bench, and touch the keys.  He also picked up Jackson's recorder on Christmas day and began whistling into it.  He also loves to 'dance'.  Watching him move his head to music makes me so thankful that his hearing improved!

Matthew got me a present this year. He started making the mmmmm sound.  He might not be calling out 'mommy' yet, but I am now certain he will in time.

The kids loved all of their Christmas bounty and more so, we had so much fun being with each other and family.

My Favorite Images

These are some of my favorite images from the past week.

Alyssa in her Xmas dress (sewn by Grandma Joy)

Jackson proving that all you really need for fun is the box the toys came in.

I love watching my Dad play with the kids.  He is an amazing Granddad.

If this vacuum was the real thing, we would have the cleanest house in Houston.

Matthew playing in the baby area at the Houston Children's Museum.
He had a grand time!

Also at the Houston Children's Museum, Alyssa and Jackson had a ball in the Cyberchase area.

Jackson just pulled a stool over so he could control the giant computer on his own.
He called it his 'rocketship'.

12 Days of Christmas

On the first day of Christmas, the good Lord gave to me: a child with a disability.

On the second day of Christmas, the good Lord gave to me: a heart full of love for my child with a disability.

On the third day of Christmas, the good Lord gave to me: an ache in my heart and a heart full of love for my child with a disability.

On the fourth day of Christmas, the good Lord gave to me: a tear in my eyes, an ache in my heart and a heart full of love for my child with a disability.

On the fifth day of Christmas, the good Lord gave to me: an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the sixth day of Christmas, the good Lord gave to me: a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the seventh day of Christmas, the good Lord gave to me: a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the eighth day of Christmas, the good Lord gave to me: supportive family and friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the ninth day of Christmas, the good Lord gave to me: remarkable doctors and therapists, supportive family and friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in heart and my heart full of love for my child with a disability.

On the tenth day of Christmas, the good Lord gave to me: an appreciation of small accomplishments, remarkable doctors and therapists, supportive family and friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the eleventh day of Christmas, the good Lord gave to me: a sense of pride, an appreciation of small accomplishments, remarkable doctors and therapists, supportive family and friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with a disability.

On the twelfth day of Christmas, the good Lord said to me: Reach out and share your sense of pride, your appreciation of small accomplishments, your remarkable doctors and therapists, your supportive family and friends, your sense of humor, your ray of hope, your unsuspected strength for the tear in your eyes and the ache in your heart and your heart full of love for your child with a disability.

-borrowed (with minor edits) from Babies with iPads

Merry Christmas

Merry Christmas from our family to you and yours!  

Happy Christmas Eve

Jackson was joyous to open the Star Wars advent and find the Christmas tree.

Our Lego Star Wars characters singing "Hark the Herald"
(a la Charlie Brown Christmas)

Holiday Break

Darren's last day of work for the year was Monday, Alyssa's last day of school was Tuesday, and Jackson and I were done last week.  So, the Hoy House is on holiday break for 2 weeks!  All the things I love about breaks---sleeping in, not having to abide by a schedule, eating whenever you feel like it, etc-- makes the kids crazy.  Alyssa, Jackson, and Matthew all thrive on routine.  By Tuesday evening Alyssa was getting a bit emphatic about needing to know what was going to happen the next day.  No fly by the seat of your pants for these kids.  They don't respond well to my "just go with the flow" response.  Oh well.  So, Darren and I laid out a rough daily schedule for our break, which we mostly followed yesterday and today.  And so far, so good.

We had a Wii-A-Thon today.
It was great fun.  We bowled, played baseball,
bicycled, played tennis, jousted, and
played Star Wars Legos.

Yesterday, Alyssa went to see a movie with a friend and
Darren took Jackson to see a movie too.
Mattie and I went to my favorite used book store and
stocked up on new (to us) Star Wars books.

Stairs

Last week, Matthew figured out how to go up the stairs.  Once he made it past the second step, there was no stopping him.  The first day he went all the way up, I brought him back down, and he did it again.  And again, and again, and again.  6 times in a row.  And then I put the gate on the stairs, and Matthew sat holding on to the gate, crying.  If by chance we forget to put the gate on the stairs, moments after we turn our backs, Matthew will be hollering from upstairs for us to come get him.  I'm thrilled he has figured it out. Now I wonder how long it will take for him to figure out how to come down the stairs.  I guess it gives us something new to work on during physical therapy.  

Good and Hectic

This past week was a good but hectic one.  Monday, Tuesday and Wednesday I gave final exams in my 3 classes, graded the exams, posted final grades, and responded to students' issues with the grades.  Tuesday Matthew had PT and Alyssa had a girl scouts' ceremony.  Wednesday was Alyssa's birthday. Thursday Matthew and I did a round trip to Dallas for his hand exam. And Friday I celebrated Angels' Day (our dear cousin Jenn's birthday) by doing all the things she would have enjoyed on a typical day. I went to have lunch with Alyssa at school, then went to Jackson's school to help with their holiday party, and then I went up to my school to turn in grades.  It was a very Jenn type of day. I wish that Jenn was still here on earth to do those things, but I know she celebrated in a big way in heaven, as she loved a party and this year my fun uncle Mark is there to help her toast the day of her birth.  

This weekend was a bit slower, but not by much.  Yesterday we ran errands while Alyssa went to a birthday party, and today we went to a gaming place for Alyssa's birthday experience.  In lieu of physical stuff, we give experiences and this year we went to the ITZ family fun center...and we had a ton of fun!   We bowled, played games, ate nachos, drank icees, rode on the train, and turned in our tickets for some little plastic stuff.  After which we came home and watched the Smurfs movie.  A nice ending to a hectic, but good week.  This next week should be considerably slower.  Whew!

Mattie liked to drive.
(Notice the finger configuration--Matthew using his index finger like a thumb.
This is the same way that Darren attempted to drive home the afternoon we realized Matthew was missing thumbs.)

Alyssa loves playing air hockey.

Both Aly and Jax tried the motorcycle game.

Alyssa loved the bowling.  Jackson lost interest before the end of the game.

Matthew wanted a skeeball and worked for several minutes to get it from the chute.

They must take after me, skeeball is my favorite too!

Thumbs

On the 12th day of Christmas (Jan 6), the Texas Scottish Rite Hospital is giving Matthew a thumb!  

Today was Matthew's second hand consultation in Dallas.  It was a rough journey there, both literally and figuratively, but it was well worth it.  The hand surgeon noted the following:

-Matthew is an anomaly (as we knew).  He is the first kid that she has seen with a missing thumb that doesn't have abnormalities in the wrists.  His wrists are perfect and will make the pollicization easier.
-The way that Matthew uses his hands makes him a perfect candidate for the surgery.  He uses his index fingers like thumbs, and he has muscle forming the way that it would for a thumb.  
-The surgeon was very excited to watch Matthew play, to see how active he was and how much he uses his hands.
-They will do one hand at a time.  We get to choose which hand goes first.
-He will have a cast after surgery. The cast will go all the way up to his shoulder and he'll have to wear it for 6 weeks.  For a boy that dislikes wearing long sleeves, it may seem like a very long 6 weeks.
-We will schedule the 2nd surgery at the 6 week post-op visit to get the cast off the first hand.  
-The good news about doing it so early in the year is that Matthew should be cast free for the summer.    
-Matthew would do just fine without the surgery. We know this and he proves it to us every day.  This is an optional surgery, but this surgery will make it easier for him to do what he does.  (50% of hand usage is attributed to the thumbs.)
-After the cast comes off, Matthew will not need therapy. He will use his finger like he always does, now it will just be easier for him. 

As I entered the waiting room that we first visited 14 months ago, I remembered how I sat there that first visit, praying that the day would come for us to have this surgery...that Matthew's heart would be strong enough, that he would still be with us.  That day is soon here!  Thanks be to God!

As excited as I am for Matthew to have thumbs, I wish I had a crystal ball to see how this all turns out. Because this is the first optional surgery, I worry if we are making the right decision. But I keep going back to the thought that this will make it easier for him.  Oh how I wish I could make every thing easier for him!

Matthew & Mickey have a lot in common!
Mattie was gifted this shirt from a sweet soul.

Happy 6th Birthday to Alyssa!

I can't believe Alyssa is 6. I remember her entry into the world like it was yesterday.  I look over at her some days and expect to see that cute little baby looking back at me, but instead I see this skinny, gaped tooth little girl smiling back at me.  She's observant, sweet, caring and definitely my little academic.  I have loved watching her grow these past 6 years, and can't wait to see what the next 6 hold for her!

Happy 6th Birthday, Alyssa!

Oddities

Matthew has a host of oddities that still go unexplained by our large team of specialists.

-Temperature regulation: Matthew will sweat when no one else is sweating, and if he is the slightest chilled, his lips turn blue.

-Extremities: Matthew's extremities (legs most often) are a different shade than the rest of his body. It is not a tan, and look a little yellowish to me. It is just him.  Also, Matthew's feet swell on occasion.

-Veins: Matthew has small veins, and as our cardiologist noticed during the heart cath, an atypical venous structure. Doesn't seem to concern anyone, except the phlebotomists who have to draw his blood.

-Weird Noises:  You can often hear Matthew's stomach slosh, even if he hasn't had much to drink/eat.  (Like jogging with a half empty water bottle.)  And Matthew grinds his teeth-- seemingly all the time.  

I'm willing to accept these are just part of Matthew, but I do wonder (and worry) if these are anomalies that point to something bigger. Hopefully not. 

Cookie Decorating

One of my favorite holiday traditions growing up was decorating cookies with my friends.  Every year, my mom made tons of sugar cookies and let me invite friends over to decorate the cookies.  We always made a huge mess, but had tons of fun.  This is a tradition I want to pass along to my kids, and I hope they will have as fond memories of it as I do. 

Saturday was the cookie decorating party at the Hoy House.  Alyssa invited over 3 of her closest classmates and Jackson invited over his best buddy from preschool.  This was the first time that the kids had over kids that were friends forged on their own (not kids of our friends).  A neat new experience.  It was a bit crazy at times with 7 kids in the house, but cookies were decorated, and overall I think everyone had a great time.  A wonderful holiday memory.

GI Meds (Again)

Since getting off the GI meds in October, Matthew's eating has taken a nose dive.  Today we went to see the GI.  Not good news. Between getting off the meds, the fact that he'd very much like to feed himself (though he isn't yet efficient enough to do so for an entire meal), and the latest stomach bug, Matthew has lost almost 2 pounds in the last almost 2 months.  That is close to 10% of his body weight.  So, Matthew is back on the pricey gastroperisis meds again.  We hope Matthew won't have to be on the meds forever, but we definitely want him on them as long as he needs them! 



Waiting for the GI appt,
Matthew plays Peek A Boo Barn on my itouch.

Craniosynostosis- 1 year post op!

1 year ago today Matthew had his craniosynostosis surgery.  There were rocky moments in the OR that day and there was a chance we could have lost him. Thanks to his fantastic surgeon, Dr. T, his great medical team, the blood donated by my Dad and Peter, and the sweet grace of God, we have had the great pleasure of holding and loving on our sweet baby Matthew for the last 365 days. (and more!) We couldn't be more thankful!

Today we went to see Dr. T for the 1 year check up. It has been so long since we had been down there, I had to check the route to Dr. T's office before we left.  Matthew's head has healed perfectly.  Additionally, we did talk about Matthew's propensity for grinding his teeth.  Matthew was born with a recessed chin and a small jaw, which may be causing the teeth grinding.  And the teeth grinding has caused the teeth to grow in slanted toward the back of his throat.  Dr. T indicated that they typically don't do anything about this until all of the adult teeth come in, including the molars (~16 years old).  But at Matthew's check up in 2 years, Dr. T will have the orthodontist and maxillofacial team come take a look if Matthew is still grinding his teeth.  Overall, it was a good appointment. 

Holiday Fun

Last week we started our Star Wars Lego advent calendar.  It is the highlight of the evenings now.  The anticipation of what each of the little doors will hold...a little character, a small ship to put together, etc.  Lots of holiday fun!

 
As well, this past Saturday, Alyssa and Jackson went with Grandma Joy to decorate gingerbread houses.  Time with Grandma, candy, and icing-- what isn't to like?  

All I Want...

...for Christmas is my two front teeth!  

They may not be 'the' two front teeth, but Alyssa is in definite need of 2 front teeth.  Her first one came out a few weeks ago, and today she pulled out her second one. And I think there are 2 more coming out soon.  She may have a very gaped grin for Christmas pictures!

Ride On Toys

At PT on Thursday, Matthew worked on riding the ride on toys.  I was saddened, realizing yet again how Matthew has to work for things that came so naturally to the other kids.  These ride on toys were a favorite of Jackson's when he was 6 months + younger than Matthew is now.  Jackson used to scoot around our living room, time and time again. And though I was saddened at how hard Matthew has to work at these seemingly simple things, I did take great joy in seeing him slowly but surely move...first backwards, and then a little forward.  

A page from Jackson's 2008 Favorites book.

 Matthew on the ride on toy at 21 months.

Crazy & Messy

When you walk into our house, there is no doubt that we have 3 small kids.  At this very moment there are plasma cars, ride on toys, books, balls, the remote control, Star Wars blasters and other random toys littering our living room.  No matter how hard I try to straighten up, it almost always has a disheveled look. 

I joke that I should add "stuff mover" to my mommy job description because I move the same items time and time again.  I put the remote on the end table, and 2 minutes later Matthew throws it back on the floor. I put the ride on toys away, and a few minutes later, Alyssa and Jackson are racing around the living room.  I put the toys in the bin, and within the hour I'll look around and find them all over the living room.  I feel like I do this a half dozen times a day. I really should only do it once, with the kids, right before they go to bed but I'm not ready to admit that my life is that crazy & messy yet.  

Right Now

Life is very good right now.  Everyone is relatively healthy, just periodically dealing with typical ailments like ear infections, head colds, and stomach bugs.  When we visit the pharmacy, it is for antibiotics, not heart meds or Vicodin.  Just comparing how far Matthew has come in the past year + reminds us to be so very thankful for this good life today.  

I was further reminded the other day.  I'm a member of couple of rare chromosome disorder support groups and one featured a little girl as their angel of December.  The sweet little girl with a rare chromosome disorder went to heaven at age 13.  Her story wasn't that different from Matthew's.  This was a reminder that though life is very good right now, that may not always be the case. Matthew's health could take a turn.  Hopefully not, but it could and because of that, I need to be very, very thankful for the goodness of now.  I am very thankful for right now.