Life as a 12 month old

We saw many family members over the weekend who mentioned how they enjoyed reading Matthew's blog. I promised them some more updates since I've slacked off and haven't posted in nearly a month! Our typical week now consists of school work for Maria in the morning, therapy sessions in the afternoon, a couple nights of soccer & dance, a busy work schedule for Michael, and chores and various activities filling up our weekends. We've had doctor appointments for Matthew, both his 12 month well-check and a visit to the cardiologist. He weighted in at 18.5 lbs, and 28.5 and had a lousy reaction to his MMR vaccine 10 days after (covered in red bumps and a fever). His PFO in his heart is still there but should decrease in size, no invasive surgery necessary. We don't need to return to the heart doctor for another year. I still need to get to the lab to do Matthew's CBC and thyroid tests but it's on my list.

We have a fully loaded therapy schedule now, with PT 2x/week, speech increased to 2x/week, and OT 1x/week. OT (occupational therapy- fine motor skills) is our most recent addition and our therapist, Melissa, is awesome. All of the sessions are generally held on Tu-W-Th, allowing Monday and Friday as free days. I can breathe easily on those two days, without anyone coming to the house, and know that the house can stay messy if it's messy. Though I'm very grateful for all of the services we receive and know that they have helped Matthew significantly, it's a lot to juggle with 4 little kids, nap times, feeding times, school work, etc. Once Maria's school year is complete we have a wide open schedule with no activities, so bring on the therapy! Our annual meeting is next Monday, it's a therapy pow-wow where all 3 therapists, our service coordinator, and the county EIOD come together and write up Matthew's new IFSP.

Some of Matthew's recent accomplishments... he's creeping on all fours and pulling up to stand! This is huge, for the longest time his little legs were like Jell-O and bottomed out whenever we would stand him up. And now he's doing it all alone! He still has a fast army crawl and usually beelines for the bathroom, the floor vents, or the front storm door. We're working on cruising, or moving along standing up, now. His babbling has really picked up. Just a couple weeks ago, clear as day, he said, "Hiii Dada." He says a loud, grunting "Hiii" to everyone and waves. He's clapping often and lights up when we sing, "If You're Happy and You Know It." And tonight he did his first sign, "more." Matthew's still nursing about 4 times a day but has tried regular milk and yogurt and liked them. He still doesn't get the hang of the straw cup but does well drinking from a regular cup. He generally eats bananas and rice cereal for breakfast, crackers and a Stage 2 tub for lunch, and another Stage 2 tub for dinner along with food we're eating chopped up into small pieces. Most of the food he spits right back out, but at least he's taking part in what we're eating. The kid could live on crackers if I allowed it though.

But enough of those stats and facts... his favorite things to do is play with his siblings and watch them as they run all around him. They are so sweet to him and he just adores them.

In their "nest"

"Hiiii Dada!"

We have a creeper!

Trying out the car

Hi!

Soccer night at the park

Mass with Daddy

Our family at Matthew's aunt's First Communion, also pictured with grandparents and aunts and uncles

A special time with his great-grandma

Eating and Waving

This video is a little dark but it shows off some of Matthew's new skills, feeding himself and waving! For about a week straight I waved to Matthew non-stop, convinced that he would start to imitate me. Just the other day, while looking in the mirror at him, I said, "Hi Matthew!" and waved. He put a big smile on his face and waved back! I think he says "hi" too. He has been a waving machine to all of us, especially when he's in his high chair. Enjoy!

Rice Cereal!

Matthew tried rice cereal for the first time last weekend. He seemed to like it! Instead of putting the spoon directly into his mouth, we tip the spoon towards him from the side to encourage him to keep his tongue inside his mouth and to have him close his mouth. These are some of the things that we work on during speech therapy. His therapist has been happy with his tongue movement, lip closure, and the way he is beginning to imitate sounds.

 

 

 

 

 

Starting at the Beginning

Let's backtrack a bit to introduce the star of this blog, Matthew, who arrived quickly and three weeks early on April 16, 2012. It was the day after tax day, which is significant since it's the official end a hectic tax season for Michael, a CPA. After the long hours and continuous weeknight and weekend work, April 15th finally arrived. It was Divine Mercy Sunday, which is always a special day for us as he proposed to me at the Divine Mercy Shrine several years ago. I told Michael that I could have the baby any day now. Sure enough, I went into labor that night. It was probably my best labor yet- our three kids were home with a neighbor and later on my mother-in-law, cozy in their beds for the night. Forget the delivery part itself, my biggest fear was always who would take care of the kids when I was in labor. We had a chatty nurse, who seemed to have one computer glitch after another, but otherwise we were left alone in the delivery room. Matthew arrived smoothly at 12:30 AM, after a few hours of labor, and we were delighted.

Matthew Thomas!

Proud parents

Soon after delivery I noticed a few of the nurses giving each other looks and talking quietly to one another. I asked Michael if he thought Matthew had Down syndrome and he just said that he didn't know. Down syndrome (Ds) (aka Trisomy 21, a genetic condition in which a person has 47 chromosomes instead of the usual 46), had become a part of our vocabulary after my 20-week ultrasound, where we saw that Matthew has a sandal gap, or a gap between his first and second toe. This can be a soft marker for Ds. We just assumed that he had his daddy's feet and didn't think too much of it. Although we declined any prenatal testing or genetic counseling to look into it further, I still couldn't get the idea of it out of my head. I wasn't familiar with Down syndrome at all, aside from helping out at the Special Olympics once in high school, and the unknown scared me. Michael, on the other hand, always said that he thought that babies with Down syndrome were the cutest little babies and that if we were to have a baby with Down syndrome then we would just love him even more. From that 20-week ultrasound on, I took some time to learn more about Down syndrome online and become a lot more comfortable with it, still a bit apprehensive though. I think God had a great plan for us.

Now back to the delivery night... in the early hours of April 16th we cherished our sleepy little Matthew, who had itty bitty features on his face and the cutest purple feet. In the morning the neonatal doctor came in and said that some of the nurses last night suspected Down syndrome. She showed me his little and low set ears, the extra skin on his neck, and pointed out that those cute purple feet were also consistent with Down syndrome. I thought she and the nurses were crazy but allowed them to take Matthew for the bloodwork for a karyotype test.

So sweet

Love these baby feet!

The rest of the hospital stay was like a roller coaster. I broke down after talking to the doctor and called Michael who was with the kids at our home. Michael, the matter-of-fact and strong guy that he is, simply said, "So Matthew might have Down syndrome? Ok, let's find out." I felt like we were labeled by everyone as the family who might have the kid with Down syndrome, and not in a good way. Shouldn't a baby's birth be a joyous time? Both sides of the family visited us, the hospital room crammed with people for a couple hours, where it felt like we were finally able to celebrate Matthew's birth in a happy way with others.

Meeting their new brother

New family of 6

I am so grateful for those hospital pictures of our family from my mother-in-law. I remember looking at the pictures of Matthew, knowing that he had Down syndrome, just not wanting to admit it yet... until I had the positive test results one week later (what a long week). From that point on, I embraced the saying my sister-in-law, Tabitha, told me: this is just our new normal.

Today I look at those pictures and I love the ones that show Matthew's special features. He fits right into our family and is so loved by all, especially his three siblings. We have no clue what the future will be like for Matthew but we're taking everything one day at a time. So far, it's been an awesome ride.