Blood work results

We had a good and quiet week at home aside from the kids getting over some colds. Tuesday I took Matthew and Maximilian to the lab to have some blood work done. Matthew had to have a CBC test and his thyroid levels checked and Maximilian was tested for Celiac (I don't think he has it but it's standard to check all other family members- we'll hear results next week). They were such tough guys! Our pediatrician called yesterday and said that Matthew's levels all looked good. What a relief! They did the CBC to check for leukemia, which is much more common in children with Down syndrome vs. typical children. Good news is that kids with Ds respond very well to treatment. So, I was happy to check that worry off of our list and we will repeat Matthew's blood work again when he turns 1 year. Here are some recent pictures of the little man!

Playing his piano. This play mat turns into a sit up piano, so much fun

Rolled under the swing!

Always eating his feet

He really wants to crawl and is always pushing his legs up to try

Michael has been working late most nights lately and sometimes misses seeing Matthew before bedtime. When I do keep him up, he always greets his daddy with a big kiss

So sleepy but so happy to see Daddy

Today's discovery, mail!

Matthew's First Thanksgiving

This year we were so thankful for Matthew! We celebrated Thanksgiving (and big brother Maximilian's 2nd birthday!) with my parents and siblings and my brother-in-law and were happy to host this year. Matthew seemed to enjoy himself but definitely became overwhelmed at some points with the action. It's neat to think that just one year ago when I was pregnant with him, that I said I was thankful for this little guy in response to the traditional, "What are you thankful for?" question. I gotta admit, it's so nice to see him on the outside this year instead of being pregnant like I was last year. ;-)

Family picture

Smiley guy

 

7 months old!

Look who's 7 months old! Lately Matthew has become a rolling machine and is always grabbing onto his feet and going after his toys. Here is his 7 month pic, something fun I always do with our kids each month from birth to 1 year old to show their growth.

 

 

Going after the lion

Look at those lips!

Hello, lion

I'm going to grab you

And eat you!

Yum

Nothing to do with the lion, just a little brotherly love

Local homecoming king & queen

Stories like this just make you feed good!

LAGRANGEVILLE — A Dutchess County high school set the tone for the rest of the school year, and hopefully beyond, when the student body elected two students with Down syndrome as homecoming king and queen, said the house principal. Read more...

Mommy Life blogger passes away

I have been following Barbara Curtis's blog, Mommy Life, for some time, even before Matthew was born, and always enjoyed her posts about motherhood, Catholicism, homeschooling, politics, and more recently, Down syndrome. Mother of 12, including 4 boys with Ds, her writing encouraged me and inspired me in my day to day life. Four days ago, she passed away at just 64 after suffering a stroke, leaving her husband and kids behind. Keep Barbara and her family in your thoughts and prayers at this time.

Cardiology Appointment

This morning Matthew and big sister Maria had a date with Dr. Levin, their cardiologist at Children's and Women's Physicians of Westchester. Maria just had to go for her yearly followup after having Kawasaki Disease 2 1/2 years ago. She wore her heart shirt and heart pocketed jeans for good luck. According to her echocardiogram and EKG, her heart looks perfect and she is clear to go three years before her next appointment. Woohoo!

When Matthew was born the neonatal doctor told us that 50% of babies born with Down syndrome have heart defects. She ordered an EKG and echo and Matthew has these tests done at just one day old. Although we were unsure of his diagnosis for sure, it was so nice to have that taken care of right in the hospital. The cardiologist told us that Matthew had a couple of common small holes in his heart that hadn't closed up yet, but that they should with some time. We were happy that his heart was healthy.

During this morning's appointment, the cardiologist mentioned just one opening (I am assuming the other hole closed) that appears to be a PFO, or patent foramen ovale, which is exactly how things were described to us 6 months ago. According to the Mayo Clinic:

A patent foramen ovale (PFO) is a hole in the heart that didn't close the way it should after birth.

During fetal development, a small flap-like opening — the foramen ovale (foh-RAY-mun oh-VAY-lee) — is usually present between the right and left upper chambers of the heart. It normally closes during infancy. When the foramen ovale doesn't close, it's called a patent foramen ovale.

Although it's common to have a patent formen ovale, most people with the condition never know they have it. A patent foramen ovale is often discovered during tests for other problems. Learning that you have a patent foramen ovale is understandably worrisome, but most people never need treatment for this disorder.

Not Matthew's heart but an image of one with an ASD

The cardiologist wasn't quite sure if he saw a flap to cover the hole or not so we will followup in 6 months when Matthew is one year old. If it isn't a PFO, it could possibly be a small ASD, or atrial septal defect (a hole in the wall between the two upper chambers of the heart; may close on its own). Only time will tell if it is a PFO or an ASD. Either way, if the hole doesn't repair itself it would not require open heart surgery to make the correction but a much less invasive catheter into the groin procedure described here.

Here's to Matthew's little hole closing!

All Saints' Day Photo Contest

In honor of All Saints' Day, we turned Matthew into St. Francis of Assisi and entered a photo contest through The Catholic Company. It's just for fun on Facebook, but we thought he makes an adorable St. Francis. The Catholic Company has a wonderful catalog for ordering Catholic gifts, books, etc. Check him out and vote by clicking on the 'vote' button on the upper right HERE.

Happy All Saints' Day!

Happy Halloween!

Little Pumpkin!

Friar Tuck

The whole Robin Hood crew

Ready for trick or treating!

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.

 

 

 

 

 

Our First Buddy Walk

We took part in our first ever Buddy Walk earlier this month with the Down Syndrome Association of the Hudson Valley. Before having Matthew I had never even heard about a Buddy Walk but I am so glad that we can be a part of it from this point on. A couple hundred Buddy Walks take place throughout the county each year in October to celebrate Down Syndrome Awareness Month. We met many local families at the walk and picnic afterwards and look forward to more events with our local Ds group!

Physical Therapy

Children with Down syndrome generally have lower muscle tone, or hypotonia, compared to typical children. When Matthew was born we loved the pictures that showed him sprawled out, with his arms and legs splayed out, on the warming bed in the hospital. Little did we know that that 'floppiness' was a sign of Ds. Matthew began physical therapy at 2 months old through New York State's Early Intervention (EI) program. Since he has Down syndrome, he automatically qualifies for EI based on his diagnosis. It was a smooth process in having him evaluated, choosing an agency, and being placed with a therapist (for speech as well). I love that the therapists come to my house and that I don't need to worry about getting out the door in time, finding someone to watch my additional kids, and traveling to therapy. Since Matthew's so young it can be a little tricky to coordinate his awake time with his therapy time, but so far, so good.

We have seen much success from physical therapy. During the 45 minute session (right now it's just 1x/week, soon it will became 2x/week), our therapist works Matthew's muscles, assists him in rolling, sitting, tummy time, tracking & grabbing toys, etc., guides him along on the exercise ball, and shows me things to do during the week. Matthew has exceeded our expectations and is proving to be a strong little guy! As far as milestones, he rolled from his belly to back at 2.5 months, back to belly at 4.5 months, and sat him alone for the first time at 5.5 months. We are so proud! It's funny how excited we are when he does certain things (like the other night when he grabbed his foot and sucked on his toes for the first time...), you should hear us cheer!

Balance ball during PT

Beginning to sit!

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

Growth

There was a time when I was convinced that Matthew would stay 7 pounds for forever. He was born at 7 lbs, 8 oz. and was so sleepy for a long time (even today, at 6 months old, he still takes about 4 naps a day). During our time in the hospital as I was getting accustomed to nursing Matthew, a nurse made me paranoid and said that Matthew didn't have a good suck. I politely told her that similar to most babies, he was tired... because he was not even 24 hours old. I then made it my goal to feed him, and feed him well. At Matthew's first few checkups his weight had increased, slowly but surely. His bilirubin levels were high and resulted in many trips to the lab. Eventually they leveled out though so we were able to avoid going under the lights.

Getting some sun

Soon after, I found out that Down syndrome kids have different growth charts compared to typical developing children and that they tend to grow slower earlier on. I printed out copies of the following charts and gave them to our pediatrician to track Matthew's growth.

What Is Down Syndrome?

The National Down Syndrome Society is an excellent resource in learning more about Down syndrome:

In every cell in the human body there is a nucleus, where genetic material is stored in genes.  Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes.  Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21.

This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm - although each person with Down syndrome is a unique individual and may possess these characteristics to different degrees, or not at all.  Continue reading.

Karyotype of a male with Trisomy 21