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

Speech Session

Matthew has speech on Thursday afternoons and always enjoys his time with our therapist. Every week she places him on her knees and goes up and down. This is his favorite thing to do with her and it always makes him smile. Matthew's learned a lot from it too- he'll initiate the up and down movement with his arms now.



Here are a few more pictures from the session:

"Upppp!"

Using the Z-vibe to encourage sounds. This one was "mmm."

Matthew certainly admires his therapist

Where's Matthew?

Peek-a-boo!

Special Features

I never knew too much about the unique features people with Down syndrome can possess until I had Matthew. Now I think they're pretty cool! When I was pregnant with Matthew the ultrasound tech saw a sandal gap, or a space between his first and second toe, on his foot. This can be common in people with Down syndrome but the general population can also have a big gap between their toes too (like Michael!). We had an additional ultrasound later on to check it out but the maternal fetal medicine specialist said his measurements looked great (and she didn't see much of a space between his toes). This was a very soft marker and one could not diagnosis Down syndrome based on a sandal gap alone. As soon as he was born I checked out his feet and, sure enough, he has a cute little gap. And purple feet... I think that's a circulation issue.

Next are his little features, like his smaller head and his teeny low-set ears. We noticed his ears right after birth. Kids with Down syndrome can be more susceptible to ear infections due to their small ear canals. We've been lucky so far this winter with zero ear infections and the doctors have never had a problem seeing his ear drums.

See that single crease in the palm of his hand? That's a simian crease, or a single palmar crease, as compared to two creases in a typical palm. Isn't his shirt great? People with Down syndrome can also have smaller hands but I haven't noticed too much of a difference with that yet. Also, another feature is upward slanted eyes. We think he looks similar to Michael Jr., who also has smaller eyes like his dad.

Hypotonia, or low muscle tone, makes Matthew super flexible. We always see him on the floor with both feet in his hands and chewing on a foot. At his recent well-check the nurse commented on how flexible he is. I'm so used to seeing it so it doesn't phase me but I could imagine it looks a little silly to most. PT has greatly aided in increasing his muscle tone but his flexibility will always be there.

Hypotonia can also affect his oral motor skills and speech, since the tongue is a muscle. We sometimes see Matthew with his mouth open (and tongue upwards), especially if he's concentrating on something tricky, such as sitting up independently. His speech therapist is happy with his tongue position though and the way he puts his lips into an 'O' but we do see his tongue pop out occasionally.

Finally, my favorite feature: Brushfield spots on his eyes. Brushfield spots are little white spots on the iris that are common in babies with Down syndrome who have blue or hazel eyes. Matthew slept so much after he was born and I just wanted to look into his eyes. When I was finally able to see his beautiful eyes I couldn't get enough!

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.

 

 

 

 

 

First Few Months

In an attempt to catch up to Matthew where is he today at 6 months, here are a handful of pictures from the early days to three months. Matthew has been a calm little guy from the start. Early Intervention began around 2 months with physical therapy and speech therapy. He slept through the night very early on and continues to nurse often throughout the day. His smiles started to appear around 2 months old. He rolled from his belly to back early on and tolerates tummy time well! Medically, his heart is healthy (we will monitor 2 small holes) and hearing is just fine and we will continue regular follow-up on those two, along with checking his thyroid and CBC count on a regular basis.

Opening his eyes a little more each day

Still so sleepy though!

So rashy on his baptismal day- we think it was an allergic reacion to fleece. 1 month old.

"When God made me, He was showing off"

First smile caught on camera! 2 months old

Sibling time!

The closest cousins in age, Matthew and Anna, three weeks apart

4th of July! 2 1/2 months

Prayer time

Matthew at three months old- 7/16/12