Monday, November 20, 2017

Baby Matt is Six Month Old!

Matthew is six months old!  He is not a little baby anymore, which makes me a little sad.



Matthew weighed in at 11 pounds and 9 ounces at his 6 month checkup.  He is still a teeny tiny little guy.

Matthew had his first ophthalmologist appointment a few weeks ago, and the doctor gave his vision an A++!  People with Down syndrome are more likely to have vision problems, so a checkup was recommended at 6 months old.  We didn't have any concerns going in, but were still relieved to hear that his vision looks good.  Assuming we don't see any problems, we do not have to go back until he is two and a half (that feels like a lifetime away).  We are so thankful for any piece of good news about Matthew's health and well being.

After several months of back and forth with the insurance company, Matthew was finally approved for his RSV shots!  Synagis helps to protect high-risk babies from severe RSV by giving them the infection-fighting antibodies they lack.  Because Matthew's right lung was underdeveloped, and is still playing catch-up, he has a very high risk of respiratory problems. Babies with Down syndrome are also at an increased risk of getting severe RSV.  If he were to get RSV it would probably land him in the hospital.  Matthew will get a shot each month through the end of RSV season.  The drug is usually only given to babies who were born premature, and it is very expensive, which is why it was  a battle with the insurance company.  While it is no guarantee, it definitely gives Matthew a better shot at staying healthy and out of the hospital during RSV season.  Matthew is lucky to have a daddy and a doctor who both fought for him to get the best care possible!


Matthew had his first taste of food!  We were advised to start baby food at six months old at the earliest since babies with Down syndrome are more likely to have feeding difficulties.  After talking to his SoonerStart child development specialist, we decided he is definitely ready!  He is close to sitting up on his own, and he has an interest in our food.  He is not so sure what to think, but hopefully he will get the hang of it pretty soon and fatten up just a little bit!


We can't wait to see what the next six months brings for this little guy.  Hopefully good health, a bit more sleep, and lots of smiles and laughs.  Since he is closer to one than zero I better start planning his first birthday party!  

Tuesday, October 31, 2017

Down syndrome Awareness Month Catchup 3

Down syndrome Awareness Month has been such a fun way for me to share what I have learned over the last 10 months.  Matthew brings so much joy to our family, and I am so happy that I get to share him with so many people.  He is a lucky little guy to have so many people cheering him on through this crazy journey.  Here are the rest of my posts for Down syndrome Awareness Month.  I hope you have learned a thing or two along the way.

October 23


As part of Matthew's genetic testing, after he was born, they took pictures of all of his chromosomes. This is a picture of his karyotype. Those three copies of the 21st chromosome are what gives Matthew Down syndrome, or Trisomy 21. I think they are pretty cute little chromosomes!

October 24




You may see babies, kids or adults with Down syndrome sticking out their tongue. We could even see Matthew's tongue sticking out on ultrasounds. This can be due to a combination of having a small mouth, slightly larger tongue and low oral muscle tone. Therapy will help with tongue protrusion, but for now it can be pretty cute!

October 25



These two. They already have such a special bond. A.J. has loved his "Baby Matt" since before he was born. He has shown us that he is such a caring big brother. I am sure these two will cause lots of mischief together in their future, but I am so happy that they have each other to grow up with. I have no doubt that A.J. will protect and guide Matthew along the way.

October 26



CBS recently did a piece about Down syndrome disappearing from Iceland (link below). They claim close to a 100% termination rate when Down syndrome is detected before birth. In the United States the termination rate is still close to 67%. People with Down syndrome can live long, happy and relatively healthy lives. The fact that so many aren't given a chance breaks my heart. I think the world is a better place with this little guy in it, extra chromosome and all.

https://www.cbsnews.com/news/down-syndrome-iceland/

October 27


Maternal age is the only factor that has been linked to an increased chance of having a baby with Down syndrome resulting from nondisjunction (like Matthew) or mosaicism. However, 80% of babies born with Ds are born to mothers under 35. I was 32 when I got pregnant with Matthew, which gave me approximately a 1 in 720 chance of having a baby with Ds.

October 28


When you focus on the possibilities, and not the limitations, a person is allowed to reach their full potential. Just 50 years ago people who had babies with Down syndrome were encouraged to send them off to a mental institution. We feel very lucky to be in a place in time, and part of a community, where Matthew's potential is limitless.

October 29


Jack is our first born, the leader of our boys. He can't remember a time when he didn't have a little brother. He will be off to college when Matthew is only eight, but I know they will always have a special relationship. Matthew's arrival, and KC birth, turned our family life upside down. Jack never complained about any sacrifices he had to make. He is an amazing big brother, and I know he will always be a better person with Matthew in his life.

October 30


J.P. and I had Jack when I was 22 and he was 24. The plus side of having kids so young is that we would be young empty nesters! We always joked that we would be traveling around the world while our friends were home raising little kids. Having our round 2 babies definitely set those travel plans back a few years. When we found out Matthew had Down syndrome one of the things we discussed was that he may live with us forever. We may never be empty nesters. And we agreed that we were ok with that. However, after learning more and more about the lives of people with Down syndrome today, we may get our empty nest after all. And now I'm a little sad about that! We have no idea what the future holds for Matthew, but people with Ds can have jobs, live independently and even get married. Whatever Matthew does with his life, I know it will be wonderful!

October 31


It's the final day of #downsyndromeawarenessmonth ! If you only take away one thing from all of my posts, I hope it is that we are ALL more alike than different. People with Down syndrome want the same things as you and I: to be treated with respect, love and kindness. Thank you for all of the love shown to this little pumpkin over the last month. We are so grateful to have him in our lives, extra chromosome and all!

Sunday, October 22, 2017

Putting Things Into Perspective


After my 20 week ultrasound, I had the blood test to determine the likelihood that Matthew would have Down syndrome.  We had 10 days before we got the results.  In that 10 days, J.P. and I were able to digest what Down syndrome would mean for our family.  By the end of that time, we had accepted that God had been preparing us for Matthew, and Down syndrome, for years and that he was meant for our family.  At that point I am sure I was still hoping that maybe the test would come back negative for Down syndrome, but I was ok with it being positive.  I knew in my heart that it would be, and our doctor confirmed that on a Thursday afternoon.

Over that weekend, J.P. and I immersed ourselves in learning as much about Down syndrome as we could.  We each had a different book and we read them cover to cover and shared interesting information with each other along the way.  It was overwhelming at times, but we still felt fairly optimistic that we could take it on.  We already had the most amazing support group in our families.  We have friends who have kiddos with Down syndrome who would be there to help us along the way and answer all of our questions.  We have kiddos who have Down syndrome in our lives to remind us how amazing they can be.  We told our immediate families about Matthew's Down syndrome diagnosis and were surrounded by love and support.

Because they saw a bright spot on Matthew's heart at my 20 week ultrasound, we had a perinatologist appointment scheduled for the Monday after we got his diagnosis.  That is the appointment that truly rocked our world.  We went into the appointment hoping for good news about Matthew's heart, but once we got there his heart was not what the doctor was most concerned about.  The doctor kept saying "congenital diaphragmatic hernia" like we were supposed to know what that was.  He explained it a little bit and told us we would have to deliver Matthew somewhere besides Tulsa.  There was not a surgeon in Tulsa who could handle CDH and a heart defect.  I didn't fully grasp the gravity of the situation, but J.P. did.  As the doctor was leaving the room he said, "I wish I had better news to tell you, I am sorry."

When I got home I googled "congenital diaphragmatic hernia."  That is when it sunk in for me: this baby is going to be born fighting for his life.  Statistics say that there is a 30-50% chance of survival with a diaphragmatic hernia.  If the baby's liver is up in the chest cavity, which Matthew's was, it is less than that.  Throw in a heart condition, very, very bad.  I felt like we had just been dealt a death sentence for our sweet baby boy.  Suddenly Down syndrome felt like the best news ever.

People with Down syndrome can live long, healthy lives.  Sure, there are medical complications along the way, and their own set of challenges, but nothing that can't be treated.  Therapy every week: piece of cake.  Delays in cognitive and motor development: no problem.  Lots of extra medical tests throughout life:  easy peasy.  Congenital diaphragmatic hernia: a major uphill battle.

That is the day that Down syndrome got put on our back burner.  It was secondary to Matthew's CDH.  If he doesn't make it through surgery and recovery, then the fact that he has Down syndrome does not matter.  All of our focus went to making sure Matthew could survive CDH.

J.P. and I vowed to each other that we would do absolutely anything to give our sweet little baby a shot at the best life possible.  If that meant moving half way across the country to get the best care, we would do it.  I found a doctor in St. Petersburg, Florida who only takes CDH babies who have been given almost no shot at life.  We were ready to go, if necessary.   We are so grateful that it never came to that.

Thankfully, that was the end of our bad news.  From that point forward, every piece of information we received gave Matthew better odds.  In Dallas we learned that his CDH was on the right side, which only occurs in 5% of cases.  Babies with CDH on the right side have a much higher rate of survival, closer to 80%.  And the fact that his liver was elevated was not so bad because it is supposed to be on the right side.  When we visited Kansas City for the first time they discovered that he no longer had a heart defect.  This was the life-changing news that changed Matthew's prognosis for the better.  If his little heart could stay strong, his chances of making it through surgery and recovery were good.  The doctor was literally grinning ear-to-ear when she delivered the news.  We left Children's Mercy that day filled with immense hope for the first time in weeks.

This is the first time I have been able to sit down and actually write out those numbers, to reflect on the fact that we weren't sure if we would get to bring Matthew home with us.  We are far enough removed that I can look back and say Matthew is a survivor.  He survived CDH, and is thriving.

Matthew's tumultuous start to life has put Down syndrome into perspective for us.  It will be with us, and Matthew, for the rest of his life, but it is nothing we can't handle.  Matthew is his own little person, and Down syndrome is just a little piece of him.  We are so grateful to be at a point in his journey where we are dealing with normal baby problems, like sleeping through the night and crying in his carseat.  We don't know what lies ahead for Matthew, but we are hopeful that his biggest challenge is behind him.

Saturday, October 21, 2017

Down syndrome Awareness Month Catchup 2

As part of Down syndrome Awareness Month I have been sharing something everyday on Facebook or Instagram.  Here are all of my posts since my last catchup.  I will do one more blog post at the end of the month to wrap up this special month.

October 13

Ben was our baby for almost six years. We weren't quite sure how he would react to not being the baby anymore. From the day he became a big brother he has had nothing but unconditional love for A.J. and Matthew. Ben loves Matthew and his favorite phrase about him is that he is "so stinkin' cute!" I love the way he looks at Matthew, it is pure love! 😍.

October 14



Did you know there are three different types of Down syndrome?
Trisomy 21: there are 3 copies of the 21st chromosome in every cell. This type accounts for 95% of all people who have Down syndrome, including Matthew.
Translocation: part of the 21st chromosome breaks off and attaches to another chromosome. This accounts for about 3% of people with Down syndrome.
Mosaicism: some cells have 3 copies of the 21st chromosome, but not all. This imbalance can result in fewer symptoms. Less than 2% of people with Down syndrome have mosaicism.

October 15



The chance that Jack, Luke, Ben or A.J. will have a child with Down syndrome is no greater than anybody else. Trisomy 21 is not hereditary. Only Translocation Down syndrome is known to have a hereditary component.

October 16



Hypotonia, or low muscle tone, is one of the biggest challenges for babies with Down syndrome. Luckily, Matthew has great muscle tone for a baby with Down syndrome, however, we still have to work extra hard to reach each milestone. Tummy time is the best exercise for any baby, but especially for Matthew to build his strength.

October 17



Last January, my friend Sarah Ledbetter posted a picture of her adorable little Gracie wearing a shirt that said "Nothing Down About It." We had just found out our diagnosis and hadn't even shared the news with friends yet. I followed her link on Instagram to the account Nothing Down About It. I have been following ever since. Oakley shares all the love and light her little boy brings to the world. I will be sharing a video in a separate post, but wanted to share Matthew wearing his very own #nothingdownaboutitshirt.

Please take a minute and watch this video. This mom is such a warrior for her son, and an amazing advocate for Down syndrome. She has inspired me to share all the love and light Matthew brings to our lives with the world. 

October 18



The word "retard" or "retarded" is offensive. It is offensive whether you are referring to a person with an intellectual disability or something you think is stupid. I know most people who say "oh, that's retarded" are not trying to be hurtful, but it is a word that should not be used in this day and age. #spreadthewordtoendtheword

October 19


💙Brothers stick together and are friends forever.💙 Over 90% of people who have a sibling with Down syndrome report that relationship as being one of the greatest gifts in their lives. I have no doubt that Matthew will have a very special relationship with each of his big brothers.

October 20



People do not "suffer" from Down syndrome. In a recent study, 99% of adults with Down syndrome said they were happy with their life. I am quite certain that is much higher than the typical adult population.

October 21


Nearly 50% of babies born with Down syndrome also have a congenital heart defect. Many of those babies will need heart surgery at some point early in life. We are so thankful that Matthew was born without a heart defect, despite one being present earlier in my pregnancy. 

Thursday, October 12, 2017

A Bright Future


Matthew's future is so bright.  He is surrounded by people who love and support him.  He will be given every opportunity possible to be the very best he can be.  I can't help but get a little teary eyed every time I think about how lucky we are to have two of the most amazing schools for Matthew already lined up.  

The Little Lighthouse is such an amazing place, and it is about a mile from our house!  The Little Lighthouse's mission is to glorify God by improving the quality of life for children with special needs, their families and their communities.  They provide tuition-free educational and therapeutic services to children with special needs ages birth through six.  They just opened their brand new facility last year, and it is state of the art.  J.P. and I were lucky enough to go on a tour while I was still pregnant with Matthew.  We were both so incredibly impressed with every person we encountered and the facility itself.  We started our tour by watching a video and we were amazed that we knew multiple people in the video!  We already felt a part of the Down syndrome community from the very beginning.   The Little Lighthouse doesn't just serve kiddos with Down syndrome, but with many varying disabilities.  They accommodate all children and work with them to make it a fun, educational environment.  They have people come from all over the world to observe their school!  

We put Matthew on the waiting list at The Little Lighthouse when I was 24 weeks pregnant.  We didn't even have a name for him yet.  I can't even count the number of people, who upon hearing about Matthew's Ds diagnosis emailed me or pulled me aside to make sure we knew about The Little Lighthouse.  

Because they provide tuition-free education, they rely on donors who believe in their cause.  I assure you that you will see me doing fundraising for them for years to come, but if you are interested in learning more about how you can donate to The Little Lighthouse, just click here.    

I've said it before, and I will say it again, we are SO lucky to be a part of the Marquette/Christ the King community.  That community has been one of the biggest blessings in our lives, especially over the past year.  We chose Marquette for our kiddos because J.P. went there and had such a positive experience.  He met most of his best friends there, and has been friends with them since he was in elementary school.  That is rare, but I can see the same thing in my boys' future.  

One of my absolute favorite things about Marquette is the RISE program.  RISE stands for Religious Inclusive Special Education.  RISE was modeled after a program in the Kansas City area (known as FIRE) that has been successful there for over a decade.  The program is based on the "inclusion" model which allows for children with special needs to be in a regular classroom with the assistance of a teacher's aide or the supervision of a special education specialist.   One of the great things about the inclusion model is that everybody benefits.  Typically developing students benefit from learning about diversity, acceptance and kindness.  The RISE program also helps any child who may just need a little extra help or attention.  

Our kids have been around Down syndrome every day, even before Matthew arrived.  Jack has had a classmate since kindergarten.  He has been in his class, played on his sports teams, and been his friend for six years.  One of Luke's very best friends has a little sister with Down syndrome.  Luke has known her as long as he can remember.  Ben has a little girl in his class who has Down syndrome.  She was actually one of the very first people to know I was pregnant with Matthew.  Before we had told anybody, she came up to me and said "You have a baby in your tummy!"  At the time I thought my outfit must not be very flattering!  Her mom said that she says that to lots of people, but it still feels extra special to me! She comes and checks on "Baby Matthew" every day after school.  To know that we have all these people to lead the way, and to help us along, is so priceless.  We are grateful for their friendship and the light they bring to Marquette.  

Students in the RISE program pay the same tuition as other students.  The difference in cost is made up through donations.  You can also look forward to me doing fund raising for the RISE program for years to come!  (As a head's up, I will be selling raffle tickets in January.)  It is such an amazing program.  The learn more about the RISE program, or to donate, click here.

For so many kiddos with special needs their education is up in the air.  We are so blessed to have Matthew's future mapped out, at least until he is in high school.  We are hopeful that in the next thirteen years there will be a high school in Tulsa who adopts a similar program to RISE.  There are also colleges and universities across the country who are instituting inclusive programs.  I can't think that far ahead right now, but I know that Matthew will have options.   I follow National Catholic Board on Full Inclusion on Facebook, and their posts give me great hope for the direction the world is headed as far as inclusion.  

Down syndrome Awareness Month Catchup 1

As part of Down syndrome Awareness Month, I have been sharing something about Matthew or Down syndrome every day.  Most of my posts have just been little snippets on Instagram or Facebook, so I thought I would put all of them here for those of you who aren't on social media.  Thank you for caring about Matthew and following along with his journey!

October 4

"I want a world where every single person can look at someone with a disability and see the human being, not the difference."  
This quote comes from a mom of two boys with Down syndrome in her blog post titled "Why Do I Post So Many Pictures of My Kids?" This sums up one of the major reasons I have been so open about Matthew's life and journey. I hope when you look at Matthew, you see a precious baby full of life and possibilities, and not just Down syndrome.

October 5

Before Matthew's diagnosis, I was unaware of all the proper terminology and was guilty of some of the things listed below. To an average person, it may seem like it doesn't matter. But to a family whose child is labeled all the time, it is important to show that their child is a human first, and their diagnosis is secondary. People with Down syndrome should always be referred to as people first. Instead of "a Down syndrome child," it should be "a child with Down syndrome." Also avoid "Down's child" and describing the condition as "Down's," as in, "He has Down's." Matthew is a child with Down syndrome, but he is his own little person first and foremost.


October 6


As part of this special month I want to share pictures of Matthew with each of his brothers.  They are his biggest fans.  I am starting with Luke because he loves babies!  One time when I asked Luke "where did you come from!?" He replied, with a completely serious straight face, "from sharks."  Since then we have joked that all these crazy boys came from sharks.  And Matthew has the hat to prove it.

October 7


A person either has Down syndrome or they don't. There is no such thing as mild or severe Down syndrome. People with Down syndrome, just like any other person, have their own strengths and weaknesses. Using the terms "high functioning" or "low functioning" is frowned upon.

October 8


At my 20 week ultrasound my doctor saw several Down syndrome markers, one of which is a short nasal bone. We had a 10 day wait between that ultrasound and receiving the results of our genetic testing. I analyzed this ultrasound picture for 10 days and convinced myself that his nose was perfect, whether he had Down syndrome or not. I am thankful for that ten days of not knowing for sure. It allowed me to grieve and have hope, but by the end of it my heart was filled with love and acceptance for this little guy. He will be the person that God made him to be, and he is perfect just the way he is.

October 9


 Matthew is 5 months old! His biggest accomplishment over the last month is getting off oxygen! He loves being outside, chewing on his hands and sitting up like a big boy (although not on his own yet). He likes to have one-on-one time with Mommy in the middle of the night. We love this sweet little boy to the moon and back!


October 10

These are two of my favorite little markers of Down syndrome. Matthew has a "sandal gap" between his big toe and second toe. He also has a curved pinky finger which is know as clinodactyly. Just because a person has one of these characteristics does not mean they have Down syndrome, but they are very common in people with Ds.



October 11


Matthew is a little string bean! There is a special growth chart just for kiddos with Down syndrome. On a typical growth chart, Matthew is off the chart small. On the Ds chart, he is around the 20th percentile, which is about right for a Szafranski boy. People with Down syndrome are known to have short stature, and their arms and legs are usually shorter than typically developing individuals. Matthew just weighed in at 11 pounds!