Learning more about our little man and Down syndrome
Tuesday, October 30, 2012
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!
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!
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| Balance ball during PT |
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| Beginning to sit! |
Monday, October 29, 2012
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.
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| Opening his eyes a little more each day |
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| Still so sleepy though! |
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| So rashy on his baptismal day- we think it was an allergic reacion to fleece. 1 month old. |
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| "When God made me, He was showing off" |
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| First smile caught on camera! 2 months old |
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| Sibling time! |
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| The closest cousins in age, Matthew and Anna, three weeks apart |
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| 4th of July! 2 1/2 months |
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| Prayer time |
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| Matthew at three months old- 7/16/12 |
Saturday, October 27, 2012
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.
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.
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| Getting some sun |
What Is 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.
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| Karyotype of a male with Trisomy 21 |
Thursday, October 25, 2012
IDSC for Life
One of the groups I joined online after having Matthew was the International Down Syndrome Coalition for Life group. They're currently running a photo campaign and are posting pictures of people with Ds along with positive messages. This one was from today, beautiful!
Wednesday, October 24, 2012
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.
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.
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.
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.
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| Matthew Thomas! |
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| 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.
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| So sweet |
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| 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.
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| Meeting their new brother |
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| 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.
Tuesday, October 23, 2012
Why Blog Now?
Michael and I have been married for six years and have four beautiful children. I've thought about starting a blog on our family for some time now. The topics have always swirled around in my head- life with a lot of little kids, our faith, our numerous food issues that keep popping up, homeschooling... the list goes on. Then, 6 months ago I had our fourth baby, a sweet little guy named Matthew Thomas, who has Down syndrome. This blog will highlight his life and how he has introduced us to another exciting topic in our own lives. Truly something to blog about!
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