Happy 1st Birthday Matthew

Matthew is ONE!!!

Happy, Happy Birthday to our sweet baby boy!!  

More birthday fun coming soon.  

Potential

"If human beings are perceived as potentials rather than problems, as possessing strengths instead of weaknesses, as unlimited rather than dull and unresponsive, then they thrive and grow to their capabilities" -Barbara Bush

The quote above popped up on my Instagram feed the day that Barbara Bush passed away, and it felt like she was speaking directly to me.  I have been thinking about writing this blog post for weeks, and I keep coming back to this quote in my mind.   This quote can, no doubt, be applied to all humans, but I believe it is especially meaningful when you think about people with special needs, like my sweet baby Matthew.

Fifty years ago, babies born with Down syndrome were almost all institutionalized.  It was very rare for a family to go against the doctors advice and to take their baby home with them.  People born with Down syndrome were thought of as problematic and a burden on their families.  Because they were institutionalized and not given opportunities to grow and learn and experience the world, their potential was stifled.

Because of early intervention, inclusive education, an increase in higher education programs for people with intellectual disabilities and more opportunities in the workplace, we are just now seeing a generation of people born with Down syndrome who are able to reach their potential and it is encouraging.  Today, a baby born with Down syndrome has limitless potential, just as any typical baby.  The battle lies in getting others to see their potential and allowing their strengths to guide the way.

Matthew will be ONE in three days (can you believe it!?), and I figured this would be a good time to talk about his future.  J.P. and I have very high hopes for Matthew's future, and we believe his potential to be unlimited.  One of the biggest lessons we have learned over the past year is that people who have Ds can do almost anything, just on their own timeline.  Matthew gave us our first lesson on this before he was even born!  I got induced on May 8th and was sure he would be born that day.  I was even so bold as to post a picture saying "It's baby day!"  Matthew had other plans, and decided to hang out on the inside for one more day, making his debut at 3:12am on May 9.  This was just his introduction to the lesson he has been repeating many times over the past year.

As Matthew turns one and isn't considered a "baby" anymore, I know the developmental questions will get more common.  A typical one year old has at least a couple teeth, can walk or cruise around on furniture, maybe says a couple words and is transitioning to eating table foods.  Matthew has zero teeth, isn't even crawling yet, has good pre-verbal skills, but no words and will only eat baby food.  And you know what, we are incredibly proud of him!

I don't focus on the things he can't do, I focus on how far he has come and all the amazing things he CAN do!  He can sit up by himself, which is a huge victory for babies with low muscle tone.  He just started waving, and I dare you not to smile when he waves at you with one hand facing out and the other facing himself.  He has made it almost 8 months without having to go back on oxygen.  He has slowly, but surely, grown to a whopping 14 pounds.  He sleeps through the night (knock on wood).  He takes naps in his crib, which I thought may never happen.  He eats puréed baby food like it is going out of style.  He drinks from a straw cup, which none of my other kids could do when they were one.  He signs "all done" when he in finished eating and can tell you how big he is, if you are lucky to catch him in the mood to perform.  Every single milestone he reaches is that much sweeter because we know he has to work extra hard to get there.
 

I've said it before, and I will say it again, Matthew's future is bright!  We will fight for him and make sure his potential isn't stifled by low expectations or people focusing on his weaknesses.  We don't know Matthew's strengths yet, but we can't wait to see the person he grows to be and we have no doubt that he will change the world.

And now for a quick medical update.  It's been four months since my last post, and you can definitely take that as no news is good news!  Matthew has been doing amazingly well.  He hasn't had any major complications or illnesses, and we are so thankful!  After the year we had, we have enjoyed just coasting along (with 5 kids) for the past few months.

We made our way up to Kansas City for Matthew's one year checkup last week, a little early because of scheduling conflicts.  We saw 4 different doctors who were all impressed with how he looks and sounds.  We saw a pulmonologist for the first time, and she asked us 100 questions and he seemed to pass her test.  She said his lungs sound great and she was pleased with all his progress.  The only concern is that he has a slight elevation in his diaphragm on the right side where it was repaired.  Apparently it was also present when we were there six months ago, but the doctor we saw then didn't mention it to us at the time.  Because Matthew is doing so well and not showing any signs of a struggle to breathe or any other symptoms, they are just going to check on it in a few more months. If it is worse, or if he shows any symptoms in the meantime, we will have to talk about doing another surgery.  I left the appointment feeling a little bit discouraged, but was reminded by the doctors that he really is doing very well given his start to life.  We didn't get the all-clear we were hoping for, but it was overall a good appointment.  We will go back in September to visit the Down syndrome clinic and then to get a chest x-ray and checkup with the neon clinic.  Fingers crossed that his diaphragm strengthens and that we do not have to have any more surgeries.

Now the countdown is on to Matthew's first birthday!  We will be celebrating him all week, and I can't wait to share all the joy and excitement with you in a new post very soon.  We are so grateful for all the love, support and prayers that we have received.  We could not have made it through this year without our village.

A New Year!

Happy New Year!  Matthew has been so busy over the last couple months that I missed a monthly update.  You are in for a treat, because I have SO many pictures to share with you.

Before I get into the normal update content, I would like to take a moment and reflect on how far we have come in a year.  On January 6, 2017 we learned, with 99.999% certainty, that our little boy would be born with Down syndrome.  I will never forget, as we drove home from the doctor, J.P. said to me "God has been preparing us for this for a long time, we just didn't realize it." His words were so true.  Three days later, we learned that he had a heart defect and a diaphragmatic hernia that would require surgery immediately after birth.  It felt like the odds were stacked against our baby.  We were so filled with fear of what lied ahead.  But we knew one thing for sure:  we would love this baby and do everything in our power to give him the best shot at life.

I wish I could go back in time and tell myself that everything would turn out fine.  That we would get to bring our sweet baby home.  That he would be healthy.  That he would bring so much love to our family.  That he would make us appreciate the little moments more than we ever could have without him.  That normal would never again be taken for granted.  I wish I could save myself from all the worry, fear and tears.  But without all that, we wouldn't be where we are today.  I am so grateful for this new year and all the possibilities that lie ahead for Matthew and our entire family.

 The past year has been a rollercoaster, and we are happy to be off that ride!  Every night that we have all seven Szafranskis under the same roof feels like a gift, one that I won't stop appreciating any time soon.  The goal for this year in normalcy!  We are hoping for no major life changing events around here (except for maybe winning the lottery or something fabulous like that).  We have settled into as much of a routine as you can have with five kids.  We get to go to our kids sporting events, and school pickup and work on little projects around the house. We are planning a summer vacation.  We are so grateful for all of these little normal moments.  

Matthew is now 8 months old!  His little personality is really starting to shine, and we just can't get enough of him.  Over the last couple weeks he has started to laugh at people (not just when tickled).  When he is in a good mood he will just laugh at everything!  He is such a happy little baby.  He has turned into a bit of a Momma's boy, which is just fine with me!  He gives J.P. the biggest whole-body smiles when he gets home from work, they just melt me!

On the developmental front, Matthew is working on sitting unassisted.  He can sit for several minutes propped up with his weight on his hands.  We work on balance and core strength every day, and I am just waiting for the day he lifts those hands up and doesn't do a faceplant.  It could happen tomorrow or not for another month or two.  He LOVES sitting up to play, so I am hoping he will get it figured out sooner rather than later.

Matthew started eating baby food shortly after he turned 6 months old.  It took some time, but he has gotten really good at eating baby food off a spoon.  This seems like something simple, but for may babies with Down syndrome eating is a big challenge.  We will soon move on to different textures, but we feel encouraged that he hasn't had any major aversions so far.  Our tiny little guy needs every calorie he can get.

At Matthew's six month checkup he had bloodwork done to check his iron levels and thyroid.  These are tests that are recommended for all kiddos with Down syndrome at that age.  One of his thyroid levels came back slightly elevated, so he was referred to a endocrinologist.  Our doctor, who also happens to be our neighbor, went over what we are looking for and how it can be a bit challenging in people with Down syndrome.  Many of the common symptoms of hyper or hypothyroidism are also common characteristics in Down syndrome: dry skin, constipation, slow weight gain, etc.  He ran a more thorough test and all of Matthew's numbers came back normal.  We will continue to see the endocrinologist every three months to keep an eye on his thyroid.

I wish I could say that Matthew had a wonderful and merry first Christmas, but that wasn't really the case.  Matthew started feeling bad a couple days before Christmas.  He developed a nasty sounding cough and just felt crummy.  Our amazing pediatrician met us at his office on Christmas Eve to check on Matthew.  I was terrified that we were going to be sent to the hospital with RSV.  Thankfully, Dr. Daley put him on some a steroid and sent us home!  We ended up back at the doctor for a chest X-ray a few days later, but that came back clear as well.  It just took our little guy a long time to fight off his first respiratory infection.  We are thankful that he didn't end up back on oxygen or in the hospital.  Between his under-developed lung and Down syndrome, he is at an increased risk of complications from respiratory problems.  It was so sad to see our usually smiley little guy not even crack a grin for a couple days, but made us so happy when he got his smile back!

Before I sign off with you for this update, I wanted to talk about one more thing that is near and dear to my heart.  During one of my October posts I discussed how we received our diagnosis and that is was a relatively positive experience.  Unfortunately, only 11% of parents who receive a prenatal diagnosis report having a positive experience with their doctor.  That is a day that will never be forgotten, and is the first impression of Down syndrome for many parents. If a Down syndrome diagnosis was immediately followed with information and support it could change lives.  It could save lives.

The Down syndrome Diagnosis Network is a non-profit online-based network whose mission is to support new and expecting parents of children with Down syndrome by providing information, connections and support.  I am a member of one of their parent groups whose members are all parents of kiddos the same age as Matthew.  It has been an invaluable network for me to connect with other people who are on a similar journey.  Every year the DSDN hosts a retreat just for moms who have small children with Down syndrome.  It is a chance for moms to connect, inspire and recharge.  This year the retreat is in Phoenix, Arizona in September and I am hoping to go! 

I will be fundraising over the next couple months for DSDN.  I believe they can make a huge difference in the lives of all families touched by Down syndrome.  They also offer incentives for fund raising, so if I meet my goal of raising $5,000 for them then I will be able to go to the retreat free of charge.  I would greatly appreciate your support in this amazing cause!  Click here to donate to my fundraiser.  

Thanks for sticking with me through this long post! Now here is cuteness overload in the form of tons of Matthew pictures from the last couple months.  Mighty Matthew now has his own Instagram account, so if you would like more Matthew pics in your daily life follow along!  You can find him @mighty.matthew.  

Cheers to health and happiness in 2018!!

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!  

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!

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.

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.