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!

Monday, October 2, 2017

Delivering the News

I have been toying around with the idea of writing daily posts to celebrate Down syndrome Awareness Month for a while. It has been hard for me to sit down and write one post per month, so the thought of doing 31 of them is a bit overwhelming!  I decided that I will share something every day, but it may not be a blog post.  I may just post a picture or a little snippet on Facebook or Instagram.  This morning, on the second day of the month, I was already at a loss.  What do I share!?  Then I came across something that shocked me and I was immediately inspired.

I follow several Down syndrome groups on Facebook, one of which is the Down syndrome Diagnosis Network.  This morning they posted the following:  In a 2011 study, only 11% of parents who received a prenatal Ds diagnosis reported a positive experience with their doctor.

Doctors across America are the ones delivering life changing news to parents, and the way they handle that delivery can shape the parents' feelings and even save lives.  Many parents know nothing about Down syndrome when they receive their diagnosis.  They rely on their doctor to provide them with information and guidance.  When the first thing your doctor says after delivering the news is about terminating the pregnancy, that is the first impression of Down syndrome: not worthy of life.

I feel incredibly fortunate that I am one of the 11% who had a positive experience.  My OBGYN, Dr. Ribaudo, was wonderful.  She was always straight forward with the medical information, but was also supportive emotionally.  She respected our decision to forgo an amniocentesis because it wouldn't change the way we proceeded with my pregnancy.  She always asked how I was doing, mentally as well as physically.  She made sure we were in touch with local Down syndrome support groups.  She kept a positive outlook on Matthew's life, even when other doctors were grim.  I will be forever grateful that our first moments with a Down syndrome diagnosis were positive.

Imagine the difference it would make if every Down syndrome diagnosis was followed with a positive response.  If every doctor said "I know this is not the news you were hoping for, but children with Down syndrome today live very happy and productive lives."  It is a moment in time that every parent will remember for the rest of their lives.  In the midst of heartache and uncertainty, a positive outlook can make a world of difference.

Sunday, October 1, 2017

Down Syndrome Awareness Month

October is Down syndrome awareness month.  Throughout the month, I will be sharing about Down syndrome, Matthew and our journey with him so far.

Down syndrome is the most common genetic variation.  It occurs in approximately 1 in every 700 live births in the United States.  Down syndrome is also known as Trisomy 21, because there are three copies of the 21st chromosome.  

One of the most important things to keep in mind about people with Down syndrome is that they are more alike than different.  Matthew is first and foremost a little Szafranski boy. He will look like his brothers and have other similar characteristics, just with his own twist.

I shared a bit of information about Down syndrome and what we knew before and what we have learned in this post from World Down syndrome Day.

I am excited to share with you over the coming month, and as always, J.P. and I welcome any questions you may have.  One thing is for sure:  we love our sweet Baby Matthew and ALL 47 of his chromosomes.

Thursday, September 14, 2017

Our New Normal

Wow!  What a year we have had!  One year ago, on September 9, I found out I was pregnant with Matthew.  It was a complete and total shock, and our lives were sent into an immediate tailspin that we are just now coming out of. We sold a house, bought a house, moved, learned all about Matthew, moved to Kansas City for two months, and came home to five very busy boys.  After a year of total chaos, we finally feel like we are settling into our new normal.

Matthew just turned four months old!  There have been a lot of changes over the last month.  One of the most exciting changes is weaning him from oxygen.  He has been off oxygen during the day for over three weeks now, and recently we started leaving it off at night.  He has done amazingly well with the weaning, and I am hoping we can be off of it for good in the next couple weeks.  Right now we still put it on him at night, but only turn it on if he needs it.  I use little bandaids to keep it on his face instead of the oxygen stickers, which allows his face to be sticker free during the day.  I still love seeing his naked face.   Our pediatrician said we won't be in any hurry to give the oxygen up for good.  If Matthew gets a cold or respiratory infection he will probably need a little bit of extra O2 to help him fight it off.

Another major change is that Matthew moved into his own room and is sleeping in his crib.  The second night in his room he slept ALL night!  I thought we had it made.  Since then it has been a little rocky (to put it nicely).  He is having a hard time learning to put himself back to sleep if he wakes up, and he definitely experiencing a sleep regression which is very common around four months old.  Every night is trial and error and we never know if it will be a good night or a bad night.  It is like handling a stick of dynamite whenever we get him to sleep!  I think he is getting back at us for the sleepless nights we missed out on as a newborn because he was in the hospital. Someday, hopefully soon, he will be a good sleeper.  Did you know that kiddos with Down syndrome are usually better sleepers than typically developing kiddos?  I am hoping to experience that perk pretty soon!

When I was taking Matthew's three month pictures, before my last blog post, I tried getting pictures of him on his belly.  I laid him on the Boppy and ended up getting one good picture, but it was definitely not very successful.  Now, just a month later, he is holding his head up SO high and can roll from tummy to back and back to tummy!  My challenge in getting the picture this month was keeping him on his tummy long enough for me to get back to my camera!  Mobility, here we come!!  Matthew, so far, is achieving gross motor milestones within the average range of a typically developing child, which is not expected for babies with Down syndrome.  We are very grateful that he seems to be such a strong little guy.

A.J. turned two at the end of August, which means we survived two under two for the second time in our lives.  We hope these two boys will be the best of friends and love having each other by their side for the rest of their lives.  Watching them together makes the craziness worth it.  We joke that we were done having kids, but God decided that A.J. needed a buddy, so he gave us Matthew.

Matthew had his checkup with Dr. Daley this week, and he said he looks and sounds great!  We will go back to Kansas City for a checkup on October 25, and we don't see Dr. Daley for two months!  I can't even explain how wonderful it feels to have over a month without any doctors appointments!  I am going to soak it up.  There are a ton of things we will need to have checked out around six months old, so the following month or two will be busy.

J.P. has used the phrase "coming up for air" to explain where we are in our life.  Our lives have been anything but normal over the last year, but we are finally coming out of it.  When discussing whether we should go to a school event or not J.P. responded by saying "Yes we should go, that's what normal people do.  They go to school events."  We missed out on so many things over the last year.  We weren't able to enjoy holidays or other special occasions as much because of the stress we were under.  We put our lives on hold to give Matthew the best shot at a great life.  We would do it all over again, but I am sure glad we are on this side of it now.  We have come such a long way from those early days in the NICU, and we do not take that for granted.  Every "normal" day at home, taking care of our five boys, feels like a gift.  We are tired, exhausted and still a bit overwhelmed at times, but life is good.  Now we just need to get a good night's sleep!

I have been taking more pictures of him now that he doesn't have anything on his face!  Here are a few of my recent favorites:

PS- Did you notice the new blog header? Mighty Matthew is working those muscles!

Tuesday, August 15, 2017

Three Month Update

Matthew is three months old!  It is crazy how much faster time goes now that we are home.  The summer flew by and all the big boys are back in school.  Getting back in to a routine is exactly what our family needed.  As you might imagine, life at home with 5 boys is pretty crazy.  Having a bit more structure and some one-on-one time with each of the littles is giving me a bit of my sanity back.

Matthew has been very busy over the past month!  We had our first family vacation as a family of seven.  We went to J.P.'s parents' log cabin outside of Westcliffe, Colorado.  We have been taking the boys there twice a year for their entire lives, so it is home away from home for them.  It was so nice to be all together without sports or school or doctors for an entire week.  We got to make new memories there with all five boys.  It definitely wasn't very relaxing, but it was nice to do something that felt "normal."  Matthew had a bit of a hard time while we were there.  He was not a great eater, and had some troubles with his oxygen saturation.  We had to turn up his oxygen volume twice while we were there, which we have not had to do since long before we left the hospital.  His little body really struggled with the altitude.  As a result, he lost weight over the week we were there.  It was a bit of a wake up call, reminding us just how fragile his little lungs are.

Once we got home he bounced back quickly and put on some weight.  He has switched to nursing, which I wasn't sure would ever be in the cards for him.  Many babies with Down syndrome have low muscle tone, and it makes breastfeeding harder for them.  I didn't even introduce it until he was two months old, and I think that played a role in his success.  He was a little bigger and a little stronger.  The stress of feeding melted away once we ditched the bottles.  Matthew is in charge of how much he eats, not the doctors in Kansas City.  As long as he keeps gaining weight, we don't need to worry.  We still weigh him every night, and there are still feeding frustrations, but nothing like it was a month ago.  It used to feel like every feeding was do or die.  We have made major progress on the feeding front, and I am so grateful for that.

(In Kansas City at our favorite spot, Taco Republic)

Four days after we got back from Colorado, we headed to Kansas City for his first appointment at the Down syndrome clinic.  (Yes that's right, 32 hours in the car over a two week period). We met with the medical director of the clinic, who was so nice and will be wonderful resource to us.  She specializes in Down syndrome, so she knows all the latest research and what is best for kiddos with Down syndrome.  She talked to us about what we need to keep an eye out for, health wise, with Matthew.  There is a list a mile long of heath problems that are more common in people with Down syndrome.  It can be overwhelming, so it is nice to have somebody who can help put all that in perspective.  She let us know what we need to have checked out and when (hearing tests, vision screening, blood work, etc).  He will go back when he turns one and then yearly after that. It is so nice to take him to a place where Down syndrome is the norm.

Matthew began working with with SoonerStart, which is an early intervention program that helps families of children with developmental delays and disabilities.  A child development specialist will come to our house every two weeks. They will also provide various therapists as needed.  Our girl is named Katy and she has been wonderful.  She observes Matthew and tells me things we can be working on to keep him developing to the best of his ability.  So far she has been very impressed with him.  It is another great resource for us, as parents, to have somebody helping us along the way.  Matthew has aced all his homework so far, and we hope he keeps it up.

We also attended our first Down Syndrome Association of Tulsa meeting.  (I told you we had been busy).  It was a new parent breakfast, for families with kiddos under three years old.  We met lots of new families and listened to two presentations.  We have heard wonderful things about the DSAT community, and we are excited to get more involved as we slowly get out of the newborn/NICU fog. Everybody there was so nice, and there were some super cute little ones as well.  

Like any new parent, we have good days and bad days.  Thankfully the good days are outnumbering the bad.  Matthew is still on oxygen at night and during naps.  I absolutely can't wait for the day he doesn't need it anymore and I can see his beautiful face without anything on it.  But for now, it is helping him to grow by allowing him to not work so hard to oxygenate his blood.  We recently switched to our local pediatrician, Dr. Daley, being in charge of his oxygen, and he is much more relaxed about it than the doctors in Kansas City.  He said to use it if he needs it, and to trust my instincts.  When I was feeling frustrated the other night J.P. assured me that he won't be on it forever.  He is getting bigger and stronger every day, and some day soon I will get to take those pesky oxygen stickers off for good.

Now that I have covered all the nitty-gritty, let me tell you some of the fun stuff about Matthew!  He tipped the scale at TEN pounds today!  It's crazy to think that he is three months old and still smaller than some babies when they are born.  He is super long and skinny, like his Daddy.  He smiles at everyone he meets, and can be a little flirty with the ladies.  He has giggled a couple times when I make him dance.  He loves to watch his brothers and is getting more squirmy by the day.  He is very close to being able to roll over, which I'm not so sure I am ready for.  He doesn't love tummy time, but he is getting his head held higher every day. He reaches for and grabs toys hanging on his playmat.  We still wake him up to feed him in the middle of the night, but he is usually a pretty good sleeper.  He LOVES to be swaddled up tight, and even smiles when he knows I am about to wrap him up.  He is so loved, and we are happy to be enjoying him more and more every day (and worrying less.)