Happy Halloween

Happy Halloween!

The annual carving of the pumpkin at Granny and Granddads.

The finished product.

My little Princess Leia, Storm Trooper and R2D2 from Star Wars.
I'm glad I got 1 more year of having them in the same theme!

Happy 1 Year (adjusted)

Matthew is now developmentally equivalent to a 1 year old.  He cruises, he babbles, he feeds himself table food, he is starting to use a sippy cup, he crawls, and he loves to explore his world.  He's even the same size as a 1 year old... finally at 21 pounds. 

Never mind that he's 20 months.  We rejoice in Matthew turning developmentally 1!  Matthew is 1 of 2 known in the world with his chromosome disorder.  Until Matthew does something, we don't know if he'll ever do it.  Matthew is writing his own story, on his own time frame.  And we celebrate it all!

Matthew enjoyed watching Jackson's t-ball games.
He would clap and smile when everyone else clapped.

End of Season

If you love baseball, t-ball is likely not your game.  It resembles baseball, but it is not baseball!  Keeping that in mind helps lower the frustration level of watching 5 little boys play in the dirt while 3 others play ball. 

Today was the last day of the t-ball season for Jackson.  As coach described Jackson today--he always had a smile on his face and was the most improved player.  He seemed to really have fun, and he did improve throughout the season.  Overall...a successful adventure! 

One of the biggest improvements--Jackson started running for the ball. 
We are still working on him not being too disappointed when someone else gets it though.

Jackson is slow running the bases. 
We speculate that it is because his helmet is too big.
Hopefully he'll grow into it before next season.

The Ironbirds!
Jackson was so excited about his baseball trophy.

Hoy Kid Update

Alyssa:  I figured out a plan to allow Alyssa some additional freedom, but it ended up not being needed.  Before I laid out my plan, she told me that she'd like to wait until she is 6 years old to ride to/from school on her own.  I have another month and a half to refine my thinking. 

Jackson:  I've noticed an improvement in Jackson lately. He's less easily frustrated, and he seems to be making some progress in his academics and fine motor skills.  I figure it is likely the school change and our increased focus on these issues, but it could just be a new developmental stage for him.  Either way, it is a good thing. Jackson even seems a little happier.  Yesterday he was out dancing in the rain.  

Matthew:  He started babbling this week!  He's always made sounds, but now they are the true baby babbles.  Ba-ba-ba-ba.  Yippee!

Free Range

After that first week of school, when Alyssa was pushing me further and further away from the front doors of the school at drop off/pick up, I was wondering when Alyssa would ask if she could go to school on her own. It happened last night.  "Can I go to school on my own on Friday?" 

I do try to ascribe to a healthy level of 'free range' parenting (a parenting movement in contrast to those that are known as helicopter parents), and I guess now it is time to test my commitment to that school of thinking.  I love that Alyssa is strong and independent, but I'm just not sure I'm ready for my 5 year old to go to/from school on her own in 2011.  I have till tomorrow to figure it out though!

Turned the Corner

When we were in the midst of Matthew's scary surgeries and hospital stays last year, I wondered "when will we turn the corner?".  Months after the last surgery, I could still see the scary past in the rear view mirror, so I figured we hadn't turned the corner yet.  

Now, 6 months after Matthew's last over night hospital stay, I feel like Matthew has turned that corner. We no longer expect the worst because we aren't often surprised by unpleasant results from specialists anymore.  Life is good. I doubt I'll ever forget the scary past, but I'm feeling more confident (most days) that the future isn't as scary. 

Betweener

I think Matthew is entering a new developmental phase.  I lovingly call this the "betweener" phase, that between being a baby and being a toddler.  The key features of this phase are (a) wanting to do things on your own and (b) not being able to.  

I think that is why we are having such a hard time feeding Matthew right now.  He wants to feed himself, but he isn't yet proficient enough to get all his nourishment without our assistance.  If we put him in his high chair to eat, half of the time he'll throw a fit. Same with the car seat.  He doesn't want to be in the car seat.  It is too confining.  He wants to be moving and more part of the action.  Oh how I remember that phase with Alyssa.  She would scream her lungs out on the way home from daycare just because she disliked being in the car seat.  

I have to say, on one hand I'm excited to see Matthew's progression, but on the other hand, I'm dreading the fact that it seems that Matthew stays in a phase 2 to 3 times longer than typical kids.  All the developmental phases have joys and challenges, and given we'll be in each phase for so long, I just hope the joys even out the rough edges of the challenges!

Mid Term

Today is the end of Alyssa's 1st 9 weeks and also the mid-term for my classes.  Thankfully, I think we have adjusted to our new schedules and are into routine.  My random thoughts from these past 9 weeks--

-Alyssa loves school.  It is nice to see her have such enthusiasm about school.

-I love riding bikes with Alyssa to/from school.  She reminds me that the simple things are wonderful too.  She loves riding through the sprinklers, wearing her coat when its cold, riding through puddles, ducking under tree limbs.  Just today, she was sharing how much fun it was to run over the newspapers as we ride.  Um...sorry to our neighbors. 

-We see many of the same kids and parents going to/from school everyday.  Most we are getting to know, at least at a superficial level.  I'm perplexed by one of our neighbors who never smiles, or says good morning back...so out of character compared to the other parents/kids we see.  Just baffling.

-I love our new child care arrangements.  Jackson loves his new school and I think the increased concentration on academics is good for him.  I can't explain the difference in him, but it is huge.  He never complains about going to school, where before he would start dreading it on as soon as he finished for the day.  And Matthew seems to be doing so very well at home with our fantastic nanny who loves him and cares for him. 

-One of the highlights of the 9 weeks was having lunch with Alyssa at school.  It was neat to see her in her element and believe it or not, the food was really good.  We had nachos, with meat, beans, and cheese, and grapes, chocolate graham cracker and milk.  Alyssa takes her lunch 4/5 days a week but gets to choose which day to buy lunch.  So far, I think her favorite school lunch is the pizza.  I have fond memories of school pizza too.

-Alyssa was 'star student' of the week this week in her class.  She took a poster about herself-- with pictures of her family, her house, her dogs, her favorite things (legos, star wars, crayons, her doll), what she does best (riding her bike, swimming, caring for Matthew), and what she wants to do when she grows up (be a teacher).  The highlight of her week is that she gets to take something everyday for show and tell.  She took her bowling trophy, her barbie (after we found school appropriate clothes for her to wear), her jewelry box, and finally her favorite stuffed animal. 

-I was offered the same 3 classes I am teaching this semester for the Spring, but I accepted only 2 of them.  I think my max is teaching 3 days a week right now.  Between dropping 1 class (and 2 days of teaching) and having that class already prepared, next semester should be considerably less time consuming. 

-Overall... the first 9 weeks of this school year have been good!

Alyssa's Kindergarten Picture

Jackson's Evaluation

Today Jackson had a developmental evaluation through the school district because we've had a few concerns of late.  But Jackson is on par with peer group.  Very good news! Though he seems to struggle a bit with recognizing letters, and really struggles with holding a pencil and hand strength, he's average...behind some peers and ahead of a few others.  So, we just need to keep on pushing him.  We can do that!

Thinking about the development of our kids--we have the entire spectrum.  Alyssa hits her milestones on the early side of typical.  Jackson hits his milestones on the later side of typical.  And Matthew hits his milestones off the curve.  I remember with a smile a total stranger looking at Jackson in his infant carrier with Alyssa toddling next to him and her telling me "oh honey, you needed more than one child.  It keeps you humble, because never again will you say the words 'but my kid doesn't do that', because you now will have a kid that does that!"  Oh, it is becoming more and more obvious that truer words have never been spoken.  

Really Good

Sometimes I forget how good we have it.  I get bogged down in the day to day, frustrated that Matthew is still predominately eating baby food, that Jackson seems to have some issues with his fine motor skills, that Alyssa's getting a little sassy, that I didn't structure my class properly and have to spend way too much time grading, and the like.  I forget that those things are all just little ripples in the water. I lose perspective. 

And then I'm reminded.  Like yesterday, we spent the afternoon at a festival for special needs kids.  I was reminded how lucky we are that Matthew is as high functioning as he is.  He's moving and communicating and shows joy! I was reminded how scared we used to be and how time and Matthew's continued development have dulled many of those fears. 

And today, as I called the Scottish Rite Hospital to begin the process to build Matthew's thumbs, I was reminded how scary life was just a year ago.  I remember thinking how crazy it was to go for the initial hand surgery consultation when we weren't even sure Matthew's heart would make it through his head surgery.  Not only did his heart make it through the head surgery, now Matthew's heart is healed and healthy.  Today, life is much calmer and a lot less scary. 

I'm so excited about Matthew's upcoming appointment with the Scottish Rite Hospital.  A year ago, I dreamed of the day that instead of worrying about life saving operations, that we could concentrate on making Matthew's quality of life better.  This surgery will do that!  Matthew uses his index fingers like thumbs.  Pollicization will put those fingers where he can use them best--in the thumb position, which will give him the pincher grasp, the key grasp, and a grip! The Texas Scottish Rite Hospital is an amazing place, full of hope.  I'm so thankful that Matthew was approved to be served there!  And I'm always so grateful to our family and friends, that have been so kind, supportive and loving through our journey.  We can never repay the debt of gratitude, but thank you!

Matthew uses his 'index thumbs' to open the cd drawers. 

GI & Neuro Update

We were without internet connection a few days this week, so I'm a bit behind.  On Tuesday, we had a marathon day of follow up appointments.  First, Matthew saw his GI.  He was happy with Matthew's growth (up to 21 pounds, but still not yet on the growth curve), and feels like we can take Matthew off his gastroperisis meds.  If Matthew begins eating less, or throwing up again, we may have to put him back on them, but for now Matthew is medication free.  Yippee!

After the GI appointment, we went over to have blood drawn to recheck Mattie's C02 levels for renal, but after waiting for an hour and 10 minutes, we had to leave before the blood draw so we could make it to our next appointment.  I was not happy with the process at the blood bank!

At the neurology appointment, we got the results of the EEG and the sleep study.  The results were mixed.  Matthew doesn't have sleep apnea (good), but his brain waves indicate that he becomes too conscious too many times during sleep (not so good). The average number of 'awakenings' is 5 per hour, and Matthew had 20+ per hour.  This may be why he seems to need so much sleep.  The doctor recommended we get Matthew out in the sunlight more to increase his levels of melatonin.  

The EEG showed some irregular brain wave patterns in Matthew's front right temporal lobe.  Because of this, the doctor recommended staying on the look out for indications of seizures, which thankfully we haven't noticed yet.  It is not certain Matthew will develop seizures, but because of this finding, there is a higher likelihood that he might.  And the surprise finding, Matthew's EEG was on target for his age.  The neurologist was delighted with this finding, as he expected Matthew to show delayed results due to his global developmental delays.  His recommendation to me was to be a 'tiger mom'.  Just as we've always known, our neurologist totally agrees, we don't know what to expect from Matthew. He's writing his own story.  We'll just keep pushing, and helping, and praying for the best!

Looking Forward

As we started planning for this cruise 6 months ago, Darren and I tried to guess where Matthew would be in his development for this adventure.  With Matthew, you can't just open a book about baby development and look up '18 months', as we would have if it had been Alyssa or Jackson. There is so much unknown about Matthew's journey and path.  

I'm happy to say that Matthew is doing everything I had imagined he would be by now by crawling on hands and knees (he hit that milestone on a consistent basis the week before the trip!) and even more by pulling up to stand and walking while supported.  

As we were coming back from the cruise, we stopped at a fast food restaurant, where working as a table attendant was a woman with special needs.  Darren and I both stared, trying to imagine 20 years down the road with Matthew.  Impossible.  I barely can imagine 6 months at a time, much less years and decades.  And thinking that far is just too overwhelming and too unknown.  Even if I could imagine it, previous life experiences have told me that it wouldn't look anything like what I imagined anyway!

For now, I'm just giddy watching our sweet baby Matthew crawl on his hands in knees...19 months in the making!

Family Cruise

We just returned from a 4 day cruise to Cozumel.  Taking the kids on a cruise wasn't exactly 'vacation', but taking kid care on a boat.  

Alyssa and Jackson had a complete ball. They went to the kids camp every day (where they met Fun Ship Freddy), watched tv, ate ice cream after every meal, slept on the top bunks, colored, and built Star Wars Lego ships while spending quality time with us, their Grandma, their uncles Bryan, Will and Joe, and their aunt Karen. 

Matthew wasn't as agreeable to the entire cruise idea as I thought he would be. The first full day at sea was pretty rough for Mattie.  He was unusually fussy and threw me for a loop since it was so out of character for him. Thankfully I found the key to making Matthew happy-- I let him crawl around the deck of the boat.  He was covered in dirt, but happy as can be.  After that, he was our sweet baby Matthew.

Would I do it again?  Hmmm...not anytime soon.  This was Darren and my 4th cruise, and probably our least favorite if we were ranking them.  I enjoyed the blue water in the middle of the Gulf of Mexico, the yummy adult beverages, and the time spent with family, but we were still tethered to Matthew and his schedule, the ship's stabilizers were on the fritz (making it the roughest cruise I've been on), and the ship was understaffed by 1/3 (which was pretty obvious at dinner).

So, for now, I'm happy taking our vacations to see family--easier to care for the kids while relaxing and enjoying the company.  Plus I have to save up for Disney World.  I promised Matthew.

Matthew was happy playing with his packets of baby food.

Alyssa and Jackson were watching Spanish cartoons,
proving my theory that they really will watch anything
since they had no idea what was going on.

Alyssa, Jackson and Matthew loved the ice cream.

The kids loved being on the 'big boat'.

The Path Taken

A year ago was my last day at Accenture.  I never regret that decision to take the voluntary separation package so that I could better care for my family.  I can't even imagine what life would have been like trying to juggle the demands of the work and the overwhelming demands of our family. 

In the past year, Matthew has had 5 surgeries, 3 visits to the ER, and he spent 11 days & nights in the hospital.  In addition to that, there have been weekly therapy appointments and countless visits to the pediatrician and various specialists.  Adding in Alyssa and Jackson each having a minor ENT procedure this past year, and various visits to the pediatrician and I'm pretty sure we would have lost our minds if I was still trying to get on early morning conference calls.  

I do miss my friends from work-- the whole reason I joined Accenture in 2001 was because I really liked the people and I do miss talking to them every day.  But that decision, cemented 1 year ago, was one of the greatest decisions I've made. 

Jackson Update

Jackson did have a raging ear infection. He's on an antibiotic and hopefully it will clear up soon. Last night he slept better than the night before, but he still woke up once.  Poor kiddo.

And today was Jackson's second day at his new preschool.  I'm so very encouraged.  This morning, Jackson had his backpack on and was ready to go 10 minutes before we needed to walk out the door.  He told me that I didn't need to walk him to his class, that he could find it on his own.  (A definite change from him hanging on my leg at drop off!) And as I picked him up this afternoon, he asked me "can I do this again?"  Why yes, Jackson, you do get to go to school again!  On our way home, he told me stories about scaring the girls on the playground (as he giggled), and playing tag with his new friend.  He seems to really like his new school and it seems to be bringing out the best in him!  We couldn't be happier! 

Misc Updates

-I'm able to sleep through the night again. I guess my insomnia was caused by the stress of finding kid care.  

-I did find someone to watch Matthew and so far, I think she's fantastic.  Matthew really likes her, she's very loving and caring with Matthew, always holding him or playing with him, and even an outside report from a friend who saw them at the park was very positive.  I've been able to enjoy time with Matthew more now that he's not in daycare. Before he would nap almost the entire time I was home because he wouldn't nap at daycare. Now he naps while I'm gone so I get to enjoy my sweet baby Matthew more.  A big win!

-The improved time with Matthew is making me more positive about teaching. I was in a bit of a funk for a few weeks, feeling like I was overscheduled and not doing a good job at either teaching or being a mom.  Thankfully that has passed and I'm feeling a bit more relaxed about both. 

-Alyssa is still doing so very well at kindergarten. I've known for sometime that she's my little academic, but it is so nice to see that she is thriving at school.  I'm so thankful for that! Her favorites are the extra-curricular activities, like PE, Art, Music and chasing the boys at recess.  

-Jackson started his new school on Monday.  He seemed to like it and says he'd like to go back tomorrow.  The school is very structured and academically focused.  I hope that this increased attention will help catch Jackson up.

-Speaking of Jackson, he decided that he'd wake up at midnight last night and stay awake until 3am.  He complained of an ear ache a few times, so I'll take him to the pediatrician later this afternoon to see if in fact it is infected.  We cannot have a repeat of last night!

-I had to wake the kids up early this morning in advance of their 7:30am dentist appointments.  Alyssa groans at me, and makes faces as she gets up.  Conversely, I wake up Jackson and he thanks me for letting him know that its time to wake up...even after the poor night's sleep. Definitely different sleep personalities!

-All was good at the dentist for Alyssa and Jackson. Yippee!

Language

Matthew is making great strides in his development, but is still most delayed in language development.  We've worried, but Matthew always gives us hope.  Though he's not using words, he is very vocal and he has recently learned a few signs.  Matthew can wave for 'hi' 'goodbye' and 'goodnight', give a high 4, pat his leg for the 'dog' and clap his hands together for 'more'.  I've rejoiced in this small but important movement toward speaking.  The spot in the brain responsible for spoken language is the same spot that is responsible for signs.  If Matthew can sign, I feel like he will talk in time! 

As well, Matthew's cognitive understanding and receptive language is good and improving.  He is able to touch the picture of the dog when you say dog. He knows cause and effect, like if I push this button a song will play.  And though he's more interested in trying to figure out how to stand up and walk, he continues to explore and work to understand his world.

Matthew's early language specialist just got reassigned to another region, and I am not a fan of the new one.  I'm trying to have an open mind, but she rubbed me the wrong way from our first meeting.  But I figure I can suck up any situation for a few hours a month in the best interest of Matthew.  Unfortunately, speech is not a service I think we'll be able to drop anytime soon.    

Founder's Day Festival

Yesterday was our parish's first ever founder's day festival.  It was a lot of fun, even more than I hoped it would be.  We met some of our friends there, and saw many of the families that we have grown to love over the years.  The kids played games, we ate some festival food, and the kids had their hair painted.  And for the first time in 5 months, the mid-day temperatures were in the very pleasant mid-80s. All in all, a very nice afternoon!

Mattie and Darren being silly. 
Mattie was fussy most of the day, but rallied for the festival.

Alyssa's pink and purple hair with sparkles.

The kids decorated (and ate) cookies.  Jackson loved his.