Thursday, September 27, 2012

Unintended Funny

Jackson likes to make people laugh, but lately we've laughed a few times that he didn't intend to be funny.

This weekend, Darren was commenting on something on the radio while Jackson was in the next room.  Darren says "duh" and continues on with his comment.  A minute later from the other room, we hear Jackson say "duh".  We went in to explain to him that we really shouldn't say 'duh', that it is not a nice word.  Jackson responds to Darren "don't say 'duh' again.  I'll just copy you."  Truer words never spoken. 

Yesterday as I was picking up Jackson at school, I asked him if he was on green all day. He responded "No. I was on yellow for part of the day, but I made it back to green by the end." Quizzing him on why he was on yellow, Jackson said "I was just jacking around."  Jackson didn't understand why I found humor in his words.
A Jackson self portrait.

Tuesday, September 25, 2012


We have been celebrating my birthday for the last 4 days.  Friday, we went to dinner with Darren's folks and Aunt and Uncle.  It was a great time and the kids did remarkably well.  Saturday, we went to my folks' house for my birthday dinner of steak.  My dad cooks the best steaks and has ruined me for all others.  Sunday, we celebrated as a family.  

All I wanted for my birthday was to go have a good time as a family, so we went to Chuck E Cheese.  I would have been appalled about the thought of this for my birthday celebration before I had kids, but now, I just want everyone to smile and have fun.  And we did just that!  

My actual birthday on Monday was a little bit of a non-event given the celebrations of the weekend, but we still celebrated even more with some yummy cupcakes.  The 17 anniversary of my 21st birthday was wonderful, and I got exactly what I wanted.  Happiness is!

Celebration #1.
I am neither 64 or 46, but the kids wanted candles to blow out, and all we had were the 6 and 4.
Celebration #2.  I am in fact 38, and the kids enjoyed blowing out candles for the 2nd time this weekend.

My mom teaching Alyssa to skip.

Matthew sat in the Gator long enough to con daddy into giving him a ride.

Jackson was quite excited about the bonfire at Granny and Granddad's house.

Celebration #3.  Jackson was all over the place and had a great time.
Alyssa was surprisingly good at Wack-A-Mole.
Matthew spent most of his coins in this little car, one of his favorites at CEC.

He spent the rest of his coins on the horses.  He loved it.

Until he didn't anymore and was really ready to leave!
Celebration #4.  Yummy cupcakes from a local bakery. 
They had lemon (my favorite), it must be my birthday!

Friday, September 21, 2012

Follow Ups

Yesterday, Matthew and I did a quick visit to the 2 Texas Children's campuses here in Houston. 

First up in the morning, Matthew had a follow up with genetics.  We were referred back to genetics by the vascular malformation clinic to see if there might be a genetic component to Matthew's feet edema.  I had forgotten how nice and personable Matthew's geneticist is, and how much time he devotes to the patient during the appointment.  We saw him for almost an hour.  In short, Matthew's duplication is so very large (64 mb meaning 64,000,000 base pairs) that it is difficult to isolate one thing in particular.  So, no answer for the swelling.  For the bulk of the appointment, we just caught up, discussing Matthew's many uniquenesses and detailing out Matthew's many accomplishments. 

He reiterated that Matthew is still as unique as they come. With the original karotype information, Matthew was 1 of 2 in the world with his diagnosis.  With the more accurate micro array information (4dup25q34.2q), Matthew is alone, even to this day.  Matthew's journey is totally uncharted.  He writes his own story.  And what an amazing story it has been. 

After the genetics appointment at main campus, we went to west campus to visit our GI.  He was hoping for a 3 pound weight gain since our last visit, but Matthew only gained 2. I was pretty jazzed that he gained 2.  This boy doesn't slow down or stop.  And he doesn't want to take the time to eat.  He is overly thin, and we are tasked with getting Matthew to eat more, and eat more fattening foods.  To now, we have been feeding him the same things we eat, where I hope not to gain weight and hope that he does-- I guess that's not enough.  The GI jokingly said we have 3 choices-- get him to eat more, get him to eat more fattening foods, or get him to slow down.  Since the 3rd choice is impossible, we will work on the first 2. 

Tuesday, September 18, 2012

On Red

I should have been prepared for this eventuality, but I wasn't.  I had hoped I just wouldn't need to know what to do when one of my children brought home a note from the teacher saying that said child had been naughty.  Not that we haven't had/don't have naughty behavior in the house, oh we have plenty, but it is just usually not at school.  We did have a time when Alyssa was almost 2 when she was biting her classmates at daycare, but since then, it has been pretty quiet in the Hoy house-- until today.  

It was the first thing Jackson told me today when I picked him up from school.  "I was on red today and there is a note in my folder."  I tried to get the story from him but he was a little vague, saying that someone called him a name and he got mad, though the note from the teacher said he wasn't listening today.  Either way, he didn't follow the rules and he got a note sent home.  Not good.  

So, without the forethought to decide on suitable punishment for this eventuality,  I had to decide punishment on the fly, though I'm not sure I would have done much differently if I had pre-planned.  No screen time.  An apology note to the teacher.  An in-person apology tomorrow.  And if that is not enough, though I hope this is the only time to receive such a note, I suspect I will have the opportunity to try again.

Jackson writing his apology. 

Friday, September 14, 2012

Music Class

I signed Matthew up for a kids music class.  He loves music and loves to dance.  I had heard that music helps stimulate the part of the brain in charge of communication, not sure if it will help, but figured he'll have fun anyway. And as an added bonus, it is an opportunity for him to interact with kids his own age and to follow directions in a group, which will come in handy in the spring when he heads to preschool.

Yesterday was the first class, and this was Matthew's first time in any class of any kind with kids his own age.  Matthew thought it was great.  He loved the songs and the dances. He mostly followed direction and he definitely watched the other kids to see what he should do. He even sat with his little legs crossed listening to a quick story, like all the other kids in the room.  He wasn't a fan of the lullaby with the lights off, but was again very happy when the lights came back on.    All in all, a good experience.

My emotions were all over.  I was so happy this class made him so happy.  I was proud when he followed directions.  But my heart also hurt a little.  In a class with 10 other 2 year olds, it was very obvious how very different Matthew is from his peers.  He looks different, he acts different, he sounds different.  He is so very unique.  I often forget that in our every day.

Thursday, September 13, 2012

Scenes from the Day

Lately, our days have felt a bit hectic.  At first I thought it was because I hadn't adjusted to my new teaching schedule, but I only teach on Mondays, Wednesdays, Fridays.  So that doesn't account for Tuesdays and Thursdays, which feel just as crazy.  After noting how this past Tuesday unfolded (and this was a rare day without doctors' appointments or therapy), I think I know one major reason why.  He's about 3 feet tall, is full of energy, and is every where!  

We hid the step stools, so Matthew found something to use instead. From his new vantage point, he can reach on the counter and pull down whatever might be on the counter which we thought was out of his reach.  He likes to throw everything into the sink-- keys, sunglasses, papers, toys.  He figured out how to open the dryer door, so I found a pair of running shorts, a spoon, and a yoda pez dispenser in there before I put in my clean laundry. Then he opened the door a few times while the clean laundry was drying and clothes fell out on the floor, but I wised up and shut him out of the laundry room.  He 'helped' me fold clothes by unfolding the clothes and throwing them back into the basket.  At first, I didn't catch him doing it, and thought I was starting to lose my mind as the basket never got lower, but he let me in on the secret.  He kept emphatically pulling at my shirt and pointing to the garage, when I finally gave in, he walked over to the broom and brought it into the house. I guess it was time to sweep.  Several times through the day, he found my tennis shoes and threw them at my feet.  He wouldn't stop fussing until I put them on.  Obviously, I needed to be wearing my shoes.  He climbed on the stool near the kitchen and flicked on and off the light, time and time again.  When he tired of the light, he pushed the stool about 5 feet away and sat down on it.  I guess he was ready for a new perspective.  But that wasn't enough of a perspective change, because later he sat on the dog.  Never Boring! 

And this was all before the mid-day nap! After nap, we jumped in the car to be the first in car line to pick up Jackson so we could rush home and jump in the bike trailer so we could meet Alyssa as she got out of school.  We made popcorn for snack and then baked mini-doughnuts for a special lunchbox treat.   After a few minutes of play (pretending we were camping in space), we bathed, ate dinner, read books and went to bed so we could do it all over again (with a few schedule changes) tomorrow.  Whew!

Mattie on his make shift stool (a small cooler).

Matthew 'helping' with the laundry.

Matthew's new perspective.

After the adventures of the day, we go get Jackson in the car and Alyssa in the bike trailer.

We love meeting Alyssa after school.

Wednesday, September 12, 2012

Hodge Podge

Here's a hodge podge of miscellaneous stuff that has been milling around in my brain, but hasn't yet made it onto the blog.

-We had a nice 2.5 weeks of school with Jackson, and now he's back to dreading school every morning.  It was a delightful 2.5 weeks. I still don't understand why he dreads it.  When I pick him up, every day he has good things to say about his day.

-Alyssa picked up right where she left off last year.  She still loves school. She's even happier this year because they spend more time on math, and she loves math.

-I haven't quite gotten in the groove with our new school schedule.  I am falling into bed exhausted every night.  That is good, right?

-I started taking an ASL class at a church in Houston this past Monday.  It is a good chance to learn and practice so I can bring home more signs for Matthew.  I am still in the Family Signs program that meets once a week online too.  The more sign we can learn and pass on to Matthew the better!

-Matthew has been communicating more and more, with sign, gesture and sound.  He has finally added some sounds back.  I feel like he is about the same place he was when he turned 2, before he started to walk and lost all of his sounds.  I am not convinced yet that he connects the sound with meaning (does 'mama' mean me?) but I am happy to hear him use the sounds again.  As well, he has gotten very animated about signing and gesturing.  He will sign a full sentence- he'll point to me, use the 'up' sign, and then the 'please' sign to say 'mommy pick me up, please' or he'll tug on my shirt, point to the door, and pat his leg to say 'mommy, the dog is out in the garage.'  It is good forward progress! 

-The compression stockings weren't improving Matthew's feet swelling, so we have discontinued their usage.  Not sure what the next step is for this particular issue, but for now, I'm not overly concerned since it isn't vascular related.

-Last weekend, we had a nice time in Dallas visiting with friends and family.  We remarked on the way home how very normal the weekend felt--that we were just a typical family with 3 kids, one of whom is 2.  For that, we are very thankful! 

Friday, September 7, 2012

Power Outage?

This afternoon, I wondered if we were having random power outages.  I turned around to see this--

Although Matthew being into everything is a bit harrowing at times, it is also the most amazing sight to see.  Happy Friday!

Thursday, September 6, 2012

Every Avenue

Matthew still isn't talking and as I have indicated, I am a step away from finding a witch doctor for some snake oil.  We took him to a developmental pediatrician last week.  We want to make sure we are exploring every avenue.  After 2 very lengthy appointments, we came out knowing about the same amount we knew before the appointments.  Matthew isn't talking and we don't really know why.  The developmental pediatrician wouldn't classify Matthew as pre-verbal, non-verbal or mute but really doesn't have a good diagnosis for him.  As we've known for some time, Matthew is really unique.  

Some highlights from the appointments:
-The doctor noted that most kids with severe communication delays like Matthew are typically on the autism spectrum. So, he did a developmental assessment to see if Matthew was on the spectrum.  As he said, not only is Matthew not on the spectrum, he isn't even close.  Matthew is a very social kid.
-Although we came away without a diagnosis, the doctor did have some recommendations we hadn't previously considered.  He recommends when Matthew turns 3 that we put Matthew in PPCD (preschool program for children with disabilities) in the morning, and in the afternoon send him to a regular preschool (with typically developing kids) for 5 days a week.  He also recommended adding private speech, OT, and PT once we transition to the school district (which we were already planning).
-The doctor decided against imagining Matthew's brain, primarily for 2 reasons.  First, finding out that the speech delay is due to a brain abnormality would only be for academic purposes, as it wouldn't change what we were doing.  Second, he agrees with our policy to avoid anesthesia unless truly medically necessary.  Though, if Matthew still isn't talking in a year, I might push for the imagining.
-I am glad we made the appointment and went, as we have some new ideas and will be able to use his notes as documentation if needed when we transition to the school district.

Matthew loves being upside down.

Tuesday, September 4, 2012

Holiday Weekend

I guess the sign of a good holiday is when you feel the need for a vacation afterwards. We went to Austin for the weekend and had a delightful time. Though we went primarily because that was where Lego Kidfest was being held, the good time we spent with friends and the time spent looking at the beautiful scenery reminded us of all the reasons we love Austin.  

Besides having a great time catching up with friends we don't see nearly often enough, we had a good time at the Lego Kidsfest.  Alyssa and Jackson had a blast building stuff, looking at museum of Lego art, and watching the Lego movie shorts.  I think they were on the young end of the target audience, as I think the optimal age would be around 8-10 years old, and that means that Matthew was way out of range.  Matthew was unimpressed with the event after the first few minutes, though he pulled it together enough for us to enjoy most of the morning there.  

In the Lego Gallery, with the baby rhino.
Matthew was more interested in being social than the Legos.

We enjoyed the Lego scenes.

Alyssa is such a girly-girl (much to my dismay). 
She really likes the new girl focused 'friends' Legos.

Both Alyssa and Jackson loved all the Star Wars Legos.