Happy Rare Day!

Chromosome 4 Trisomy 4q.  That is the umbrella rare disease that Matthew's most unique, most rare chromosome duplication falls.  His specific duplication is one of a kind.  We thought there were two, but that was based off less specific positioning of his duplication.  I keep hoping to find another-- 4dup25q34.2q-- but so far, like Tigger from Winnie the Pooh, he's the only one.

Though Matthew is alone in his specific rare disorder, he is far from alone on the rare disease journey.  There are approximately 7,000+ rare diseases (meaning fewer than 200,000 cases) recognized with new ones being added by the day.  30 million people in the US are afflicted with rare diseases, which is about 1 in 10.  The majority of rare diseases are genetic, so the disease is present from birth though the symptoms might not appear until later.  Half of those afflicted with rare diseases are children and 30% of children afflicted with rare diseases die before their 5th birthday. (source- Global Genes Project)

Today and every day, we 'care about rare' and celebrate our rarest.  For more information about rare diseases, visit http://globalgenes.org/. 

Happy 3rd Birthday, Matthew!

3 years!  We are so very thankful to have had the last 3 years to watch Matthew grow and to help him along his unique and amazing journey. 

Matthew loves-
-Dogs
-Alyssa and Jackson
-Running
-Riding His Scooter
-Brooms, Swiffers, and Stick Vacs
-Helping
-Music and Dancing
-Laughing
-Peek-A-Boo and Hide and Seek
-Group Hugs
-Being a Big Kid

Hunting and Purging

We have been house hunting in Austin for about a month now.  We even put in an offer for a house, but were a few hours too late (obviously not meant to be).  It is such a tough decision-- house, neighborhood, and school district.  We have narrowed our search down to a few neighborhoods, but the decision still seems totally overwhelming. 

While we look in Austin, we are prepping our house here in Cypress to sell.  We are going room by room, organizing and purging.  We have a long way to go, and need to get rid of a LOT of stuff! 

The kids seem to be taking it all in stride, which has made the process much more tolerable.  The kids even found a new hiding spot, and it is now Matthew's favorite.

Surpassing Expectations

This weekend,  as we begin our celebration of Matthew's upcoming 3rd birthday, I couldn't help but to think about the weekend that Matthew was born.  

I remember his very fast, very tough birth at home.  I remember seeing him as a newborn, and thinking he didn't look like our other kids.  I think we really knew then that something was wrong.  Then, less than 12 hours after he was born, I will never forget being in the pediatrician's office and her asking us "so, you know about his hands?" I remember sitting in the back seat watching Darren try to drive without using his thumbs.  I remember that weekend,  looking at those hands, wondering when I would stop staring at them.  I remember the drive to Texas Children's, the intake room, and the dark NICU.  I remember the scary discussion with the on call neonatologist.  I remember seeing our sweet baby Matthew with tubes and leads under the blue lights.  I remember the pokes and prodes and all of the tests.  I remember getting the call from the pediatrician saying it was a duplication on his 4th chromosome. I remember searching on that term and finding very scary information.  I remember it all like scenes from a movie I have seen a 100 times. 

This, the upcoming 3rd anniversary of those dark days, I am beyond grateful.  I look at our sweet baby Matthew and our life and it far surpasses anything I expected, wished for, and prayed for during those darkest days. Thanks be to God!

Go Texan Day

Here in Houston, we celebrate the start of rodeo with Go Texan Day! Yee-haw!

Big Choices

I feel woefully underprepared for this upcoming educational change for Matthew.  We have a meeting with the school district on Tuesday.  There, we will discuss their evaluation, set Matthew's educational goals, and determine what the best course of action might be for Matthew. 

The options:

5 day a week PPCD (preschool program for children with disabilities).   This will be the program that the school district recommends. It is a 3 hour program, every day, in a self contained classroom with other kids with disabilities. 

2 day a week PPCD.  This would be only two 3 hour days per week, still in the self contained classroom with other kids with disabilities.  This would be a choice we could make in lieu of their recommendations.

Pre-K Speech Only.  This would be an hour a week drop in speech therapy at the school.  Again, this would be a choice we could make in lieu of the school's recommendation.

We originally thought we would go with the 5 day a week program, until we spoke with Matthew's ECI therapists.  On graduation day, I had the opportunity to talk with each one about Matthew's progress and their recommendations for Matthew going forward.  They didn't think that Matthew required 5 day a week PPCD.  Talking it through with them, we came to the conclusion that we could meet Matthew's educational goals by leaving him at his typical preschool full days 3 days a week, doing speech only at the public school and adding private speech, OT, and possibly PT therapies to the mix.  (Very exciting to think about--that he doesn't really need PPCD!)

I called the school district in Austin to which we will likely relocate, to ensure that whatever we choose here, we are not limiting Matthew when we move.  We are much more excited about the PPCD program there, since it is an inclusive environment (meaning typically developing kids and kids with disabilities in the same class) which would be much more beneficial for Matthew.  Their recommendation was to do 2 days a week PPCD, so that he would immediately qualify for the PPCD program there since we were enrolled in it here. 

We have decided against the 5 day a week option.  So, now we waiver back and forth between the 2 day a week option and the speech only option. 

Considerations-
*In the 2 day a week option, Matthew will have more time with the teacher who will be working to implement techniques recommended by the speech and occupational therapists, but he will be in a classroom only with other kids who have disabilities, without exposure to his typically developing peers.
*In the speech only option, I will be able to observe the techniques and implement them at home as well as recommend them to his Monday, Wednesday, Friday preschool. This would be less time in the school setting, but is a similar format to ECI, and one with which we are very comfortable.

Ugh!  I am fretting and fretting.  I am bending every one's ear that I can.  I am tossing and turning and losing sleep thinking about the options.  I am praying and praying that whatever we decide, that it will be the right decision for Matthew. 

I have been a bit crazed and occupied with this decision.  Thankfully, tonight, Matthew calmed my frazzled nerves just a bit.  He crawled up in the chair with me, grabbed my hand, and laced his perfect 4 fingers in mine.  I was reminded in that moment that he is amazing, and that won't change, no matter what choice we make.  

Happy Graduation Day

March 22, 2010.  That was the first day we met with Early Childhood Intervention, when our  wonderful caseworker (and OT), Dava, told us about the program.  That day she explained that when Matthew turned 3, he would 'graduate' ECI and transition into the public school system.  On that March day in 2010,  I tried to imagine our 4 week old baby boy at 3 years old.  I couldn't even fathom it...not in any way, shape, or form.  At that time, I feared he wouldn't live to see his first birthday. 

Our sweet baby Matthew did make it to a year.  On February 21, 2011, we were assigned another fantastic caseworker (and PT), Christy, and we had another evaluation and another discussion about the big 'graduation' date in what would be 2 years.  Coming off intestine, heart and skull surgeries in the months leading up to the evaluation, I still wondered if Matthew would live to see that graduation date.

Not only did he make it another year, but Matthew thrived!  Fewer surgeries, a fixed heart, and lots of therapy (including occupational, physical, speech, and cognitive).  At that next yearly evaluation, on January 31, 2012, I knew Matthew would see that magic graduation date, but I still had a hard time imagining what Matthew would be like, what he would be doing, at that date, just a little over a year away. 

Another year passed, and today, February 19, 2013, was graduation day!  A day that I have been thinking about for almost 3 years.  A day I had tried to imagine, but never could. 

Today was a bright and sunny day, a perfect reflection of Matthew.  With the help of our wonderful therapists (Team Matthew), he is walking, running, riding a 3 wheeled scooter, not yet talking, but communicating, threading beads, doing puzzles, climbing stairs, drawing with crayons, using a fork, drinking from a cup, sucking from a straw, and much, much more.  He is doing so much more than I dared to wish for that March day in 2010. 

We owe a huge debt of gratitude to Team Matthew, who have seen Matthew through every single baby step of his journey! I will miss these caring and compassionate women, who  have come to our home twice a month for the past 3 years.  Thank you to Dava, Christy, Ysabelle, Cindy, Mary Lou, Sanwana, Carolyn, and Kristen. They have not only helped Matthew but they have been a major source of support for me as we have navigated Matthew's journey.  I do have some anxiety about how the new Team Matthew (post graduation) will come together.  But today, I am mostly thankful for where Matthew is right now and thankful for the team that has helped us along the way.

Today was a very good day.  Happy graduation day!

Our happy Matthew with his PT/caseworker, Christy.
She and I were both excited about today, and Matthew is always excited, every day!

I often feel woefully underprepared to be Matthew's mom,
and am so very thankful for the amazing people that have been placed in our lives to help light our way.

Updated Family Photos

We took our yearly family photos last weekend.  It always reminds me of the first photo session we had as our family of 5, which was in between Matthew's heart surgery and his skull surgery when he was about 7 months old. I remember that first picture day-- needing those photos, afraid that if we didn't take them then, that we may not ever have any family photos with the 5 of us.  I was afraid Matthew wouldn't celebrate his 1st birthday, and now we are a stones throw away from Matthew's 3rd birthday!  And this year, he ran around the field that we took photos.  It feels like a miracle. 

Here are some of my favorite photos from this year's photoshoot to celebrate Matthew's birthday, the date our family was complete.  Thanks to Brooke, our amazing photographer!

3rd anniversary of our family of 5!

Matthew walking around.

When did she get so big?

Jackson was stuffing acorns in the stick.  Very Jackson.

Speech

Hopeful. Dejected. Proud. Sad. Amazed. Frustrated.

We spent 2 and a half hours with speech pathologists yesterday.  It was rough. 

Matthew has a 'hi' and 'bye' approximation that he uses at appropriate times (very good!), but that is it (not good!).  He hasn't said 'mama' in months.  Language just isn't coming for him.  We just don't get it.  The pathologists don't either.  He can make sounds.  He knows that words mean something. He can sign.  He is a social kid.  But he doesn't talk!  His receptive language is about the same as a typically developing 3 year old and on the other end of the spectrum, his verbal communication is measuring somewhere near a 1 year old.  We just don't get it. 

I logically know that we are doing all we can, and worrying won't help.  But I can't help but to worry, fret, wonder if there is something else or a magic bullet, and pray.  Lots of praying.

My sweet lunch companion.

Good and Frustrating

The good and the frustrating from the last week:

+ The painters are done with the house and it looks great!  Having them here was much tougher than I thought it would be, but I am so glad it is done.
+ I am feeling pretty competent solo-parenting at the moment.  I think having the painters here that first week, where we couldn't be in the house during awake hours, made this week seem a bit easier by comparison. We are getting into a groove.
+ The week does seem to be flying by which means that in no time we will see Darren for the long weekend!
+ Alyssa and Jackson have been very helpful and understanding about the current changes in our lives. 
+ Matthew's 3rd birthday is in 2 weeks!  We have been talking about this big milestone since he was 4 weeks old at our first appointment with ECI.  Then I couldn't even imagine it-- but it is almost here!
+ I had a delightful lunch out with a friend this week. Besides great conversation with a good friend, watching our 2 youngest kids play (they are 3 days apart in age) made me relax about Matthew's development just a tad.  Besides Mattie's lack of verbal communication, there weren't many differences.  It was just what my heart needed!
+ Matthew has adjusted to preschool and is no longer crying at drop off. Yippee!

- Matthew is still having sleep issues.  It is improving, but he had a really rough night earlier this week in which we are still trying to recover.
- His sleep issues are likely contributing to his difficult demeanor of late.  He's easily frustrated and quick to begin the swatting.  He's spending a good amount of time in time out.
- We had a frustrating afternoon while addressing valentine's cards for class.  Alyssa's class isn't allowed to put names on them (not sure the reasoning), but it is expected in Jackson's class where no list came home.  First, Jackson couldn't remember the names of all the kids in his class and after he could, he couldn't remember how to spell those names.  Then, after figuring that out, he had trouble writing it on the cards.  It was not at all fun, but thankfully, it got done with no blood or tears. 
- I called the school to get more detail about Matthew's transition to the school system (in 2 weeks!) and became frustrated very quickly.  The ARD meeting is scheduled for the DAY before he turns 3...less than 24 hours before he is supposed to start school.  It may be enough time for them, but gives me some serious anxiety that everything is going to be in place in time for his transition.  I am preparing as well as hoping and praying that all the pieces will fall into place for the best outcome for Matthew! 

Jackson & Matthew waiting for Aly to get out of school.

Alyssa assembling her vday cards.

Aly's 100th Day

Yesterday was Alyssa's 100th day of school. I don't remember celebrating the 100th day of school when I was in preschool or elementary (or thereafter) but I guess it has become a big deal in the last 30 years.  Jackson was  pretty jazzed about his 100th day a few weeks ago, but I think he was most excited about the pizza party and 100th day cake.  Alyssa was really excited about the 100th day activities and the 100th day special snack.  She ran into school yesterday morning...literally ran.  And she couldn't wait to tell me all about it when I picked her up in the afternoon.  The centers for the day all had a 100 theme.  She loved it.  This is Alyssa reading her 100th day newspaper.

Jacksonisms

Though sometimes unintended, Jackson loves to make people laugh. 3 of my favorite Jacksonisms of late--

1.  We went to the doctor for Alyssa's check up. 
Dr (looking at Alyssa):  Do you sleep well at night?
Jackson:  I don't
Dr (now looking at Jackson, concerned):  Why?
Jackson:  I'm nocturnal.  I don't sleep at night. 
Dr (chuckling): That's the best answer I've heard to that question all day .

2.  The day before the parent/teacher conference at his school, the prompt for their writing journal was "I'd like you to tell my mom and dad..."  I was expecting "that I love them" or "school is fun" or even "I like math" but Jackson wrote something that only can be translated to "I am awesome." 

3.  Driving to my folks house. 
Jackson:  I remember where to turn for Granny and Granddad's house.  I remember lots of stuff because I have 2 brains, one inside of the other. 

Rocky Start

Yesterday was my first official day of solo parenting and it did not go as smoothly as I had envisioned.  I did the prep work-- I laid out clothes the night before, I had breakfasts ready, I got up early and was showered and ready before the kids got up. The morning routine of getting the 3 kids to their 3 schools actually went pretty well.  Then the painters showed up to paint the inside of the house and the craziness began! 

I left the painters to destroy (and beautify) the house while I went to teach.  While at school, Darren messaged to say he had left his 2nd form of identification in Houston and he had to have it by Tuesday morning to finish the paperwork for the new job.  I messaged the babysitter to see if she could come early to watch the kids while I met Darren between Austin and Houston (in lieu of my regular Monday ASL class).  Seemed like a good plan.  I taught and then hurried home to get Alyssa from school.  It poured down rain the 20 minutes I was on the bike, really the only rain I saw all day.  Soaking wet, Alyssa and I went to pick up Matthew and then Jackson from their respective schools. 

We came home to a house in total disarray-- furniture pushed to the middle of rooms, curtains down, tarps every where.  The kitchen was not functional.  "Okay", I thought to myself, "no biggie.  I will order pizza for dinner and the sitter and the kids can hang in the master bedroom as it is the most sane place in the house right now."  

Then the power went out, and then flickered on and off a couple of times, and then went out again.  "Ugh, I can't leave the babysitter holed up in my room with pizza, 3 kids and no electricity." So, I cancelled the sitter and loaded the 3 kids in the car for the hour and a half car ride to go have dinner with daddy.  Matthew was not pleased, since we had just spent the evening before driving the 3 hours home from Austin.  The bright point of the day was that it was very nice to see Darren.  Then the kids and I drove the hour and a half back home, where thankfully the power was back on.

It wasn't a horrible day.  At every unexpected turn, I do recognize that it could have been much worse.  But it wasn't the smooth day for which I was hoping.  Today wasn't either for that matter.  The house is still in disarray (but looking much fresher!).  We had 2 therapy appointments at the house amidst the craziness.  Matthew's room was unavailable for nap time.  We really can't hang at the house during awake hours because of the wet paint. 

Thankfully though, the painters should be done this week, the house will be refreshed and we can get into a better routine next week.   Solo parenting hopefully will be a bit easier when we get the house back to working order.  I hope so anyway!

The living room during the painting process.

Also Adjusting

Change is hard!  I am not the only one struggling with change right now.  This past weekend, we moved Alyssa's bed to Austin, moved her into Jackson's room to share the bunk bed and moved Matthew and his crib into what used to be Alyssa's room. 

Matthew has been struggling with that move. Monday night he awoke crying every couple of hours.  Tuesday at naptime, he absolutely refused to nap.  That made for a not-so-great afternoon/evening!  Tuesday, Wednesday, and Thursday nights, Matthew has awoken in the middle of the night (about 1am) screaming as loud as I've ever heard him.  After realizing that he isn't going to drift off on his own (about 5-10 minutes), we go check on him, comfort him and leave him to continue screaming for about 10 more minutes.  Not good. I am hoping he adjusts to the change very soon...for all of our sakes!

Matthew playing a video game after getting his haircut.