Happy Heart Day!

Two years ago tonight, Matthew was in the ICU at Texas Childrens with a machine breathing for him following his heart catheterization to fix his failing heart.  Today, Matthew's heart is healed.  He is strong.  He is healthy.  He is active.  He is alive.  Thanks to our pediatrician and GI who kept looking when all other doctors said "he doesn't look like a heart baby".  Thanks to our cardiologist, who took one look at him and said "Let's do an echo to find out what is going on." Thanks to our cardiac surgeon, who fixed our sweet baby Matthew's overcirculated, failing heart. Thanks be to God! 

Matthew is able to climb, run, and jump thanks to his mended and healthy heart!

Transitions

Tuesday we met with the school district about Matthew's transition from early intervention services to the school district's preschool for children with disabilities.  It was a quick meeting with basic information about the assessment and upcoming meetings, but it sets in motion the big change in Matthew's life (and ours) that is coming in less than 5 months.  It is already giving me anxiety.  We have a lot of research to do, decisions to make, and questions to have answered before then. 

Also on Tuesday, we met with Matthew's new occupational therapist.  This is our 6th occupational therapist in 2.5 years.  I struggled to find the right words as I do with everyone new that meets Matthew.  How do I convey to them that Matthew is a miracle?  That the very fact that he is here is amazing.  That much like Tigger from Winnie the Pooh, he's the only one.  That until he does something, we aren't sure if he ever will.  I know in time she will come to know that not only is he unique, but he's amazing as well.  With the high turnover rate of OTs, I hope that she is around long enough to figure that out on her own.  Either way, Matthew will transition to someone new in less than 5 months when he moves to the school district.  Lots of change.

Pantry

Matthew is everywhere and anywhere.  Though, he hasn't yet figured out how to turn the door knobs in our house, and we are of two minds about that.  On one side, turning door knobs is a skill he will need. On the other side, once Matthew can open doors, there will be no stopping him.  So, for now, he will close the door and be locked in, at least at our house. Usually he will holler when he wants out of whatever room or closet he has closed himself in.  One of his favorites right now is locking himself in the pantry. He'll sit on the juice pouch boxes we store on the floor, knock on the door, and laugh when we open the door.  Great fun!

Please Talk

Several times a day, I pray 'please let Matthew talk!' and I plead with Matthew 'please talk'.

Why I think Matthew will talk:  He has so much to say.  He is a social kid. He knows words have meaning.  He communicates with sign.  He has started to vary his sounds and noises- mamama, dadada, bababa, ahhhhh. He babbles.  He uses jargon- meaning that if you ask him a question, he will answer you verbally even though it is nonsensical.  He has figured everything else out to this point-- crawling, walking, running, climbing, eating, and so on.  The switch just needs to be flipped.  Several friends have children that didn't talk until they were 3.  No one can say he won't talk. 

Why I fear Matthew won't talk:  He isn't talking-yet.  The kids we know who didn't talk until they were 3 were on the autism spectrum, which Matthew isn't.  There are kids with similar duplications on the fourth chromosome that don't talk.  No one can tell us he will talk.  Until Matthew does something, we don't know if he'll ever do it.

So, we keep working on it.  And until he does, I keep going to my ASL classes, praying that he'll one day talk and joking that he probably will a day after I become fluent in sign language.  Please, God, let Matthew talk.

Matthew dancing with Granny at the vow renewal.

 

71 Years

Last Friday night, my grandparents participated in a vow renewal ceremony at their assisted living facility.  It was a nice event and we enjoyed celebrating my grandparents' 71 year marriage.  71 years!  Simply amazing!

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.

Celebrations

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!