Silver Lining

It is finally cool enough here in Cypress to wear long sleeves...at 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.

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.

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.

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!!

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.