Wednesday, November 30, 2011

Difference A Day Makes

What a difference a day makes.  Yesterday our house was the hot zone. I was a step away from needing a hazmat suit.  Matthew had serious gastrointestinal distress. We must have changed his clothes and sheets a dozen times yesterday.  And Jackson's fever continued to rise throughout the day, topping out at 104.  He laid on the couch, laid in the bed and slept the majority of the day. 

Then our luck turned. Matthew's last throw up was at 5pm.  And Jackson's fever broke as we woke him up to put him into his bed. Thankfully today was a whole new day.  No gastrointestinal distress. No fever.  Just happy Hoy boys, and happy Hoy parents.  Yippee!

Tuesday, November 29, 2011

Not Fun

Jumping into the week after getting home on Sunday late afternoon after a 19 hour car ride was bound to be rough.  And it has been. 

What I had thought to be allergies from my exposure to a cat over the holiday is now thought to be a cold. Not fun! Matthew threw up several times yesterday, which I attributed to drinking bad milk. But after he threw up again (twice) today and left something very nasty in his diaper, I'm guessing he has a stomach bug. Also not fun! And Jackson's been complaining of not feeling well (general yuck) since I got back from class this morning. Again, not fun!  Hopefully the lazy day watching movies and napping will mend us all.

The bright point of today is that Alyssa had the warts surgically removed from her nose this morning at TCH. Though not fun, (1) the warts are gone and (2) she seems to have no ill effects from either the surgery or the anesthesia.  Thank goodness! 

Monday, November 28, 2011

Thanksgiving Trip

Every year we journey up to Chicago for what has become my favorite holiday-- Thanksgiving.  Fun, warm, and loving family, playing cards/dice, the turkey bowl football game, good food, even better conversation, good wine, and the cookie bake make it hard to top. No matter how much time we are there, it never feels like enough.  That is the sign of a good trip!  As we sadly drove away, I wished that Chicago was at least 500 miles closer to Houston so that we could go more often!

Alyssa's favorite day is cookie bake.
Beyond the fun, I suspect it might be because Auntie C lets her lick the beater!
Aly, Jax and their cousin Jon enjoyed watching Christmas movies.
Mattie had fun playing with the cookie cutters.
Jackson and Aunt Susie enjoyed playing LCR. 
Jackson won and the money burned a hole in his pocket until we went to the store earlier today.
A week of fun--we were all worn out by the end but can't wait until the next time!

Wednesday, November 23, 2011

Dragon Mom

I recently read an article penned by a mom who has a little boy with a fatal rare genetic disorder.  Although Matthew's future (we hope) is not the same as the little boy's in the article, the article resonated with me when I first read it and it still does today.  Two of the most powerful quotes: 

"We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice."
Parent for the here and now, for the humanity implicit in the act itself--I really need to do a better job of doing this for all 3 of our kids!

"Parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever."

Although I came to this harsh truth in the dark hours of that second morning after Matthew's birth, and I was reminded of this countless times through Matthew's first year, as more time passes since those scary days, I forget how very thankful we should be for the gift of today.  For that is all we have been promised--today.  Thank you God for the gift of today!

Tuesday, November 22, 2011

Moving Video

I came across this video on Facebook, through a group I belong to that recommends ipad applications for special needs kids.  I've gotten a lot of great ideas from the group and was moved to tears by this video that they shared.

Sunday, November 20, 2011

Matthew's Progress

Matthew is continuing to fall further behind in his development in comparison to typical kids.  His development will be re-evaluated when he turns 2, but if I had to guess, overall he's now about 9 months delayed. Though (like when he was a year), he seems to be less delayed cognitively and most delayed in language. What continues to encourage us is the fact that he continues to develop at a steady pace, albeit a bit slowly.  

A few things he's done recently that have caused us to cheer: (The first two probably don't sound like good things, but they are positive signs of developmental progress.)
-Matthew gets upset when he is told 'no', complete with a cry out and huff and puff.  
-He doesn't like to take turns.  If we are playing ball and I roll it to someone else, he'll get mad and try to get it.
-He is immitating a lot more.  Yesterday he took my ear bud and put it to his ear.  
-He's often following simple instructions.
-He's shaking his head 'yes'.  When he's eating, if I ask him "is that yummy?" he'll nod. 
-He's engaging in a lot more back and forth verbal play, mimicking conversation. 
-He is traditionally crawling-- fast.
-He is really enjoying playing with toys and balls. 
-He's continuing to cruise on the couch (or coffee table, etc).
-He will take steps forward if you hold his hands.
-He's eating more and more table foods (though still taking baby food too).

I am so thankful for my sweet baby Matthew, for his sweet disposition, for the joy he finds in little things, and for his forward progress.

Saturday, November 19, 2011


I am a flawed human being.  It is humbling to be reminded of that.  Earlier this week, I misinterpreted a dear friend's words, became very defensive, and was unkind to her.  To make matters worse, I did this in front of women that we respect and admire.  I am sincerely sorry for originally not giving my friend the benefit of the doubt and then for totally overreacting and being unkind.  I'm also sorry for making the women we admire feel uncomfortable. 

Though I really wish this hadn't happened and it weighs heavy on my heart, being reminded that I am a flawed human being is humbling, and being humbled, although difficult, is a good thing.  I sometimes forget that we are all flawed, and are all in need of grace.  Forgetting that, I am too often judgmental and unforgiving in my every day--to the guy that waited to the last minute to merge and then cut me off, to the student that showed up 30 minutes late for class, to my daughter flipping out because she didn't want to wear the tan pants, to a friend that never returns calls, to my beloved for being flip about a topic I'm passionate about, and so on.  I have humbly been reminded that I am flawed, and hope to keep that in the forefront of my mind as I encounter other flawed human beings, so as to hopefully be less judgmental and more forgiving in my every day.

Thursday, November 17, 2011

Child Who Can Not Talk

A year and a half ago, I read this poem on a friend of a friend's blog.  Their unbelievably precious little one has a fairly uncommon genetic disorder as well.  Although they have stopped posting on their blog, I do think of this family often and of this beautiful poem they posted.  I think I posted part of this before, and now it resonates with me as much or more than it did 18 months ago. 

The Child Who Can Not Talk

I am the child who can not talk.
You often pity me, I see it in your eyes.
You wonder how much I am aware of - I see that as well.
I am aware of much - whether you are happy or sad or fearful,
patient or impatient, full of love and desire,
or if you are just doing your duty by me.
I marvel at your frustration, knowing mine to be far greater,
for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times.
I do not gift you with clever conversation, cute remarks to be laughed over and repeated.

I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me.
I do not give you rewards as defined by the world's standards -
great strides in development that you can credit yourself.
I do not give you understanding as you know it.

What I give you is so much more valuable - I give you instead opportunities.
Opportunities to discover the depth of your character, not mine;
the depth of your love, your commitment, your patience, your abilities;
the opportunity to explore your spirit more deeply than you imagined possible.
I drive you further than you would ever go on your own,
working harder, seeking answers to your many questions with no answers.
I am the child who cannot talk.

I am the child who cannot walk.
The world seems to pass me by.
You see the longing in my eyes to get out of this chair,
to run and play like other children.
There is much you take for granted.

I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again.
I am dependent on you in these ways. 
My gift to you is to make you more aware of your great fortune,
your healthy back and legs, your ability to do for yourself.

Sometimes people appear not to notice me; I always notice them.
I feel not so much envy as desire, desire to stand upright,
to put one foot in front of the other, to be independent.
I give you awareness.
I am the child who cannot walk.

I am the special child.
I don't learn easily, if you judge me by the world's measuring stick,
what I do know is infinite joy in simple things.

I am not burdened as you are with the strifes and conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things as a child,
to teach you how much your arms around me mean,
to give you love.
I give you the gift of simplicity.
I am the special child.

I am the special child.
I am your teacher.

If you allow me, I will teach you what is really important in life.
I will give you and teach you unconditional love.
I gift you with my innocent trust, my dependency upon you.
I teach you about how precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you giving.

Most of all I teach you hope and faith.
I am the special child.
- Author Unknown

Wednesday, November 16, 2011

ENT Last 2011 Hurrah

Today we had an ENT visit.  As the 4 of us waited for an hour to see the doctor, I was so very thankful for the fact that we see fewer doctors these days!  Though, it was nice to see all the office staff at the Health Center.  For a while we were seeing them almost daily and I think its been at least since the summer since we were there.  They are so sweet to us, and they love on Matthew.  

Anyway, the ENT visit today was to check on the warts in Alyssa's nose. They are back, and they need to be removed.  So, Alyssa will undergo the 6th Hoy House ENT procedure this year on November 29.  The 6-- (1) Matthew tubes, (2) Matthew nasal fracture repair/hospital stay for extended croup, (3) Matthew throat scope, (4) Alyssa nose warts, (5) Jackson tonsils and now (6) Alyssa nose warts again.  I am only half joking when I say that we are helping the ENT buy a new car this year. 

We hit our family out of pocket maximum this year in July (thanks to my appendicitis), so if it needs to be done, our thinking is that it should be done now, rather than waiting for the new year and a new deductible...hence scheduling it the week after Thanksgiving.   While we were there, the doctor looked in Matthew's ears to check on the tubes.  The tubes are perfectly in place, but Mattie has an active infection in his right ear again (or still).  Much to Matthew's dislike, the ENT suctioned some very nasty stuff his ear and gave us the antibiotic drops which will hopefully clear it up!  All in all, productive afternoon at the ENT.

Monday, November 14, 2011

We Are Those People

Every year, we feel rushed after Thanksgiving to get in the Christmas spirit.  It takes us a while to get our tree up, the house decorated, and then it feels like as soon as we do, it is time to take it all down.  So, this year, in hopes of being able to really enjoy the holidays, we are following in the footsteps of all the department stores and prepping for Christmas before Thanksgiving.  Yep, we are those people.  And in Houston, we were decorating the tree when it was 85 degrees outside.

Big bonus of the kids getting older-- they decorated the tree!
(at least from 4 ft high and down)

Sunday, November 13, 2011

Broke the Seal

For the last almost 6 years, we have avoided Chuck E Cheese with our kids.  We have received at least an invite or 2 a year, and up to this point, we had ignored it completely...until Saturday.  A family friend was having her 5th birthday at CEC, and we wanted to celebrate with her and figured now was as good of time as any to break the seal.  As I remembered, the pizza was a little on the cardboard side and the big rat is a little on the scary side, but what I had totally forgotten is how very much kids love that place.  They rode on a virutal roller coaster, played air hockey, enjoyed the age appropriate video games, and were joyous turning in their tickets for little plastic stuff, all in addition to pizza and cake with the birthday girl.  Even Matthew had a grand time.  It was great to experience it through their eyes.  I'd even go back!

Jackson and Matthew on the virtual roller coaster.

Alyssa is not ready to drive!

Tuesday, November 8, 2011

Rainy Day

Life isn't always rainbows and sunshine. Today was a rainy day, both literally and figuratively. 

Our house hasn't adjusted to the time change well.  Matthew is coming down with a cold and is all out of sorts.  Alyssa and Jackson have been bickering what seems non-stop.  I had a student blame me for their cheating.  Matthew's CO2 levels were low at his horrible blood draw last week, so we will have to do yet another blood draw.  We are missing our friend and cousin, Jenn, who passed 2 years ago today after losing her battle with ovarian cancer. 

I was being sad as I started dinner and then realized how very blessed we are.  We all will adjust to the time change.  Matthew is fighting a common cold...a very typical illness that will likely not land him in the hospital.  That is good!  Alyssa and Jackson, although bickering a lot, are also being very affectionate to one another.  They call the other 'best friend'.  I have 1 difficult student...out of 90.  Good ratio!  Matthew's low CO2 level may be a result of lab error, which although annoying, is just that.  And we will forever miss our cousin and friend, but are forever thankful that she was a bright light in our lives.  And Jenn connected us forever to some of the most amazing people in our lives.  We are so very blessed! 

So every day isn't sunny, but you need at least a few drops of rain to get a rainbow!

Monday, November 7, 2011

More Happiness

This last week and weekend was full of goodness...albeit mixed in with the usual dose of crazy town (population 5).

-Alyssa has her first loose tooth. She's beyond excited.

-Matthew's receptive language is really improving. I can give him simple instructions...and he follows them.  "Take this object to that person"...and he does it!  Very exciting stuff!

-Jackson has been ultra-loving of late.  Random hugs, 'I love you'-s, pats on the back, etc.  He's always been a very affectionate kid, but now is even more so. 

-We have been so pleased with our new child care arrangements!  Matthew and Jackson both seem to be getting what they need, and to top it off, calculating the costs, we saved a few dollars to boot!  

-Matthew has been partaking in verbal play (back and forth, mimicking sounds) and activity imitation (if I'm holding the phone to my ear and then hand it to him, he'll put it up to his ear).  Big stuff!

-Darren's job is going well.  It always makes for a happier home when what you do 1/2 of your awake time (or more) is going well!

-Only 4 more weeks plus finals left for this semester.  Like many things, while in the midst of the semester, time seemed to be crawling but now looking back, I can't believe how fast it has gone.  I do love teaching!

-I got a call from Dr. T's office today, asking if I would talk to a mom concerned about her daughter's upcoming craniosynostosis surgery. I'm excited to be able to share our experience, to hopefully ease a little of the anxiety I remember all too well.  I love the fact that Matthew is a success story!

Friday, November 4, 2011

Silver Lining

It is finally cool enough here in Cypress to wear long least for a few days.  Matthew is NOT a fan of long sleeves.  As soon as you put them on him, he tugs at the sleeves and bites at them.  Pretty funny.

As we are putting long sleeves on Matthew, we have uncovered a silver lining to not having thumbs.  It is much easier to put a shirt on Matthew!  No thumbs getting caught on his sleeves. 

Matthew being born without thumbs was a huge shock, and the scariest thing we had encountered up to that date of Matthew's birth.  Now, we know there are much scarier things out there, and we have encountered many scarier things with Matthew since that sunny afternoon on February 27, 2010. 

Him not having thumbs isn't even among the top 5 scary things in my book anymore. It is part of who Matthew is and he does amazing with his 4 fingered hands.  He can palm a little ball. He picks up food and puts it in his mouth. He manipulates objects with his fingers.  He gives us high 4s. He uses his index finger like a thumb.  I look forward to the day we move his index finger to a thumb position (pollicization), just so it will make it easier for him to do what he's already doing!

I am still awed by those sweet little hands, those unique and perfect little hands that propelled us into this journey.  I love them...and him...more than I could ever convey.

Thursday, November 3, 2011

Remembering Reality

Matthew is the exclamation point at the end of our family.  As I was ruminating about this with Darren, I was a little sad that our last baby experience has been so atypical.  That my final baby never did figure out how to nurse, that we won't see a tiny little one learning to walk, that very little about Matthew goes 'by the book'. 

And then Darren reminded me-- very little ever goes as expected.  It took Alyssa several visits to the lactation consultant before she figured out how to nurse, and even then she only would with assistance.  She spent a week in the hospital because she wasn't gaining weight at 3 months old, only to find out she just had some reflux.  Jackson nursed-- all the time.  He never slept.  We would walk him hours on end, laps around the couch in the living room.  He walked and talked on the later side of typical.  Even typical kids don't do what you expect when you expect it.  

Rarely anything in life turns out as you imagined it.  As I was reminded of the stark realities, not the romantic versions that clouded my memory, I was reminded how very profoundly blessed I am with our family of 5...with the exclamation point at the end.

Wednesday, November 2, 2011

Making Me Smile

What is making me smile--

Watching Alyssa go into school. I don't think she has any idea that I sit there across the street and watch her go through the front doors of the school in the morning.  She never looks back. 

Matthew's ear to ear grin when I buckle him into his car seat. We turned the car seat around so he faces forward and you'd think I had just given him a million dollars.

Listening to Matthew babble while I'm driving to pick up Jackson at preschool.  I LOVE hearing the ba-ba-ah-ba from the backseat!

Seeing Jackson running down the hallway at preschool to come meet me.  He always has a big grin on his face.

The fact that Alyssa and Jackson had as much fun giving out treats on Halloween as going door to door trick or treating.

Marveling in the difference the new school has made in Jackson. At drop off, he used to hang onto our leg tentative to let us go, now he gets out in car line without a second thought.

Seeing Matthew do the sign for dog.  He's communicating!

My one semi- frowny face--

Matthew had a raging ear infection last week, where he was bleeding from his ear.  After 5 days of ear drops, eye drops and oral meds, I think it is improving and his ear no longer stinks (reminiscent of his helmet days).  

Matthew is so happy to be facing forward.

Tuesday, November 1, 2011

What a Difference

My goodness...what a difference a year makes!

As I was holding and playing with Matthew in his costume last night, I couldn't help but be struck by how improved life is this year compared to last year. Last year, Matthew was still not sleeping through the night. He was much more lethargic.  He wasn't sitting up on his own, much less standing up.  He was just a few weeks into his recovery from heart surgery and just a month away from skull surgery.  This year--so much better!

I was struck by the enormity of this difference just last week as well. I took the health assessment through Darren's work, that is required during annual insurance enrollment. Last year I scored a 37...out of 100.  It said I was at extreme risk of depression.  No kidding!  I feared that my baby Matthew would die!  What a difference a year makes.  This year, I scored a 91.  This year is so much better!  Right now, I don't fear for Matthew's life. His heart is healthy. He's active. He's developing.  The only foreseeable surgery is for his hands, to improve his quality of life! Such a difference!

I have no idea what the future holds for Matthew (or for all of us for that matter)....but for now, I am so very thankful for this good time!!