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Night to Shine

This morning I received a link to this amazing organization.  I needed to share it with you all today!  (Thank you Illi!  I love how you send me random bits of awesomness!!)

I think for the most part, the majority of you can look back and remember your prom night almost perfectly.  For the girls, the day consisted of getting our hair done, getting our make up just right and finally getting dressed in the dress that took weeks to find!  For that one night, everyone is a princess!  Unfortunately, for a lot of teens with special needs, this night never happens.  Yes, there are amazing stories of teens who go to schools where their peers have accepted and loved them.  They are able to join in on all the glitz and glamor of the night and cherish the memories they are making.  But sadly that isn’t the case worldwide.  Which is why, Night to Shine is so amazing!

What Is Night to Shine?

Night to Shine is an unforgettable prom night experience, centered on God’s love, for people with special needs ages 14 and older. On one night, February 10, 2017, 375 churches, from around the world, hosted Night to Shine for 75,000 honored guests through the support of 150,000 volunteers!

Check out the Official 2017 Night to Shine Highlight Video featuring Gary LeVox of Rascal Flatts below:
https://youtu.be/kfSLyfFwDks

Doesn’t that look like just the best night ever!?  Each invite is treated to the royal treatment and through the night, each one will be crowned King or Queen of the Prom 🙂  How amazing that for this special event, each teen is given their chance to shine, the way they were intended to.  I would love for Jana to experience something like this one day!  Who knows, maybe she’ll even be able to meet her Prince Mikey face-to-face 😉

Learn more, or even help out by checking out this link!  Night to Shine

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On the Move

2-10-2Last time I gave a therapy update, Jana was still struggling to stand on her own and just started taking a few steps.  What a difference a few months makes!!  Jana officially can stand on her own and pull up on just about everything.  She officially started climbing up steps and making my days even more interesting.  She can walk pretty decent amount with just holding my hands or using her walker given to her by her physical therapist.  This girl is on the move and nothing is getting in her way!!  It is so amazing to see her working so hard to reach her goals.  In the past week alone, I’ve seen a huge change in her confidence and strength.  She is constantly freaking us out by climbing on furniture and getting herself in tight spots.

I found this online:

The average age to begin walking in a child with down syndrome is 25 months (with a range of 14-42 months), versus a child without down syndrome, where the average age is 13 months with a normal range of 9-17 months.

2-8-1So Jana is actually above the curve from her DS buddies in walking, and just a little behind her typical friends.  I am so so proud of her!!  At times it is still tough.  To watch her try so hard but still not be able to do it.  I can see her little brain telling her tiny body what to do, but it still not working.  There are times she gets very frustrated and just tries to give up.  But she is stubborn and independent, so not much stops her from reaching her goals.  (Even as I type this she is trying to figure out how to climb onto the couch so she can take my computer away 🙂 )

I don’t see her having to use the walker for long.  But if she does, that will be perfectly fine.  She is proud of the steps she can take unassisted and it helps bring more independence in her life.  I know when people see it with her, it confuses them.  I mean really, the walker screams SPECIAL NEEDS CHILD!!  But you know what, when I see her beautiful face light up when she can move on her own, I don’t care what anyone thinks!  My girl is perfect just the way she is!  And if people are uncomfortable with that, then thats just too bad 😉

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Guest Mama – Bridget’s Story

This week I’d like to introduce you to Megan!  She has the most adorable baby girl who is getting stronger and stronger each day!  I am so glad she was willing to share her story with all of you!

img_5006Our precious girl, Bridget Regan, was born December 5, 2016, but her story began long before that. I was just out of my first trimester when on June 30, 2016, I got a call that would forever change my life. I opted to have NIPT (non-invasive prenatal testing) for no other reason than the test was 100% covered by our insurance. I can promise you that had this test not been covered (it can be quite expensive), I would not have had it done. Without giving it much thought, I figured the test would completely rule me out as a carrier for any kind of disorder or disease; I literally never gave it a thought that my baby may come back with an abnormal test result. Early that June morning, I got the call from my OB that my NIPT testing had come back as high risk for Down syndrome. Even with this news I figured, “oh ok, but what does ‘high risk’ really mean? And I’m sure these test results have false positives all the time…” As the news started to sink in, I scoured the internet for stories of false positives. There were a few, but I quickly realized that the new NIPT testing was far more accurate than the Quad screens of days past. A knot grew in my stomach and in my throat as the reality of what I may be facing quickly hit me like a brick wall. My OB scheduled an appointment for me at a Maternal Fetal clinic to do a full body scan that day.

img_5011I remember the feel of the leather of the couch in the genetic counselor’s office. I remember what she wore, what I wore, the art on the wall, the carpet underneath my shuffling feet, the path down the hall we walked as I felt the tunnel vision closing in on what she was about to tell us. Our baby had a 91% chance of having Down syndrome. She asked us a myriad of questions that no new parent wants to face – did we know anyone with Down syndrome, any history in our families of genetic disorders, and finally the very worst of all – how would we proceed with this pregnancy. Until that question came, I wasn’t listening to all the words she was saying. It’s like I could see the words coming out of her mouth but my heart was in a tailspin of emotion and my mind was trying to catch up with my heart. What did she mean what would we do? This was our precious baby and though the news was heavier than I could have ever imagined, there was no “option” for us. This life was ours to raise and protect to the best of our abilities and not to be discarded based on a preconceived notion of a diagnosis. Our baby is more than worthy.img_5002

Following that conversation, we had a full body scan ultrasound where a heart condition was discovered that all but confirmed the diagnosis. Then a brand new fear crept in as they explained that our baby’s condition was so severe that it would require surgery within six months of life. We’ve been closely followed by cardiology teams since then and Regan is expected to have surgery sometime in March.

Our sweet Regan has now been in our lives for exactly two months and suddenly I couldn’t imagine a world without her. She is gaining weight like a champ and her sweet disposition makes me so proud to call her mine.

img_5050Throughout this journey, I’ve had the pleasure of following other mommas and families of these precious children with Down syndrome. What started as a scary diagnosis opened a window into some of the most supportive and compassionate people I’ve (virtually) met. These first few months with Regan have been such a joy but certainly not without their difficulties. I imagine Regan’s future will be the same: filled with happiness and some stumbling blocks, but I can’t wait to see what it holds for us. The fear of the unknown is washed away when I look into her precious blue eyes and know she’s already changed my heart forever, and I know she’ll change the rest of the world’s hearts too.

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Dear Birth Mama

1-28Dear Birth Mama

I want to first and foremost say thank you.  Thank you for giving your sweet baby life, and trusting in God to find her a home.  We will never meet, we will never share stories, but I promise you, you will always have a special place in my family.  Because of you, today we celebrate the one year anniversary of our Jana’s adoption day.  The day that officially changed her name from Baby Girl…to Jana Lynn.  You were not there to witness this event, but I can tell you, it was a day full of love and excitement.  Your baby girl is cherished more than I can ever explain.  Not just by the 5 of us, but by everyone she meets.  She is a beautiful, strong, loving, intelligent girl and I am so honored to be able to watch her grow.

1-28-1I wish there was a way to share my thanks with you.  So many people are confused at how a mother can walk away from her baby.  I try to explain I don’t believe that is what you did.  I want to believe that you were scared, but that you loved this tiny beautiful girl enough to put her needs before your own.  I cannot imagine the pain you must have experienced while making this decision.  I pray for you.  I pray that you somehow know that Jana is OK.  That you have been blessed for the blessing you have given us.  I pray your heart has healed from this amazing sacrifice you’ve made.

Today I just want to tell you that Jana is doing amazing.  She is growing and developing more and more each day.  She is strong-willed and determined and has not let this disability dictate her life.  I can see already that this girl is going to do amazing things in the future!  You would be so proud of who she is, I know because I truly am!

Again, thank you…(that phrase is just too small for the gift you have given us isn’t it?! ) We are forever grateful for your love and sacrifice and I promise I will strive every day to be the mama Jana deserves.

We are all eternally grateful for your special gift.

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Guest Mama – Mikey’s Story

I’d like to introduce you to Laura.  She is a beautiful mama I have had the honor to befriend through our Instagram Community.  Her little boy Mikey is just a few months older than Jana and is the cutesiest thing 🙂  I’ve asked her to share her story with all of you.  I hope to feature a new mama every week or so.  I’m so proud of the DS community friendships I’ve developed and know that these mama’s have a lot to share!! pics-from-jakes-phone-058

I found out I was pregnant with Mikey in the beginning of July, 2014. My husband and I were excited! We already had names picked out for either gender. My Dr offered to do genetic testing, but I declined it. We had a twenty week scan to find out the gender of our first baby. Our fingers were crossed for a boy. We really wanted our first baby to be a boy. The tech put the results in an envelope. We found out our baby was a boy a few days later at a gender reveal party. We were so excited!!!

We went to the birthing center on March 28, 2015 to have our baby boy. I was so nervous and excited! 17 hours later at 11:59 pm, Michael James Snyder entered the world! I was so happy and exhausted. All I could do was stare at him! He was perfect and he looked exactly like his daddy!
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The next morning the pediatrician came in to do an examination on him. When she completed the exam, she told us that Michael had Down Syndrome. She didn’t offer any information or assign us a social worker. She just walked out. I put on a pretty brave face, but I felt shattered. My husband was solid as a rock, but I was a hot mess! It wasn’t because he had a disability, I was just very scared. I didn’t know what to expect. I had no idea that what terrified me at the moment would turn out to be the biggest blessing and our greatest adventure!

Michael has some developmental delays and some health issues, but he has a wonderful team of doctors and therapists that help us to help him reach his goals. Those are things we do to help keep him healthy and to reach his full potential. img_4575

Michael is such a pure joy to be around! He has shown us what true love is. He has such determination and grit! He works hard every day to do things that his other baby friends can do without a problem, but he always does it with a smile on his face! He’s taught us so much.

We recently had another baby. Michael adores his new baby sister! He showers her with hugs and kisses, brings her a toy or her binky when she’s sad, and steals her formula if I set it down where he can get it. He tries to crawl in her swing or bouncer with her to cuddle, then he’ll steal her blanket when I’m not looking. They smile at each other one minute, then make each other cry the next. He’s a typical big brother. I can see already that they will have a strong bond. I can also see them getting into a lot of trouble together. Hey, someone has to keep mamma on her toes, right?
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There are many days that go by that I wonder “What if?” What if I would have known about his diagnosis before he was born? What if I would have known what I know now after he was born and we received his diagnosis? Would I still have spent the first few months crying at some point each day? Would I have been so afraid? Honestly, I don’t know. I believe that God does everything for a reason. I can’t go back and wonder “What if?” When I know that through all of this we have become stronger. My relationship with my husband is stronger, my relationship with God is stronger and I’ve developed amazing friendships with so many families in the Down Syndrome community.
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I think the most important thing I would tell any parent that has received a Down Syndrome diagnosis is: Process those emotions and don’t feel guilty about it. It’s okay to grieve. It’s okay to be scared. It’s even okay to be a little angry. At some point all of those powerful and overwhelming emotions will turn into an incredibly strong love for your child. Support, encourage and nurture your baby! It takes a special person to raise such a unique individual! Sit back, relax and enjoy the ride!

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Meeting up with our ENT

img_8150Ok so we met with our ENT this past Friday.  He examined Jana and set up a plan.  Basically because her sleep isn’t horrible (even thought most times I feel like it is!) he wants to hold off on surgery if possible.  He prescribed Flonase for us to use for the next 6 weeks.  He is hoping that it will help open up her airways a little to help out her sleep.  He was slightly concerned about some water in her left ear.  She does have a cold right now, so he is hoping it is just that.  When we go back, if there is still water we will have to consider putting tubes in her ears as well.  Also, he needs to wait to see what our cardiologist has to say in case she needs surgery on her heart as well.  If everything goes as planned, she will have her tonsils and adenoids out this summer.  That I can handle.  Adding tubes in her ears and heart surgery….that brings me nightmares!  So please pray that everything goes smoothly!!

On another note, we are excited to share with you that Jana has finally started standing up on her own!!  So far shes pulled up on our TV stand and last night I caught this on her video monitor!  She officially can stand up in her crib!!  Now nothing is out of her reach!!

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Sunday….Funday?

image1Its Sunday morning.  Normally I would be at church, helping my hubby wrangle the kids for children’s church.  Jana would be with us, because we have a theory that each time she in nursery, she gets sick.  It’s probably false, but this girl looks at a hospital and shes sick for days 🙂  So why am I home, sitting on my couch while Jana is overly engrossed by an episode of Princess Elena/Sofia the First crossover (Thank you Disney Jr!).  I’m sick!  I’ve been coughing almost non stop for the past 4 days.  When I start to feel like its going away, it comes back with avenges!  We’ve been praying this doesn’t pass on to her.  So far so good, however she seems to randomly break out in a cough fit just to keep us on our toes.

Overall Jana has been doing pretty good.  I don’t feel like physically a lot has changed.  We are still working diligently to get her to stand on her own.  Once she’s up, she can stand like no ones business.  But getting that momentum up is her struggle.  I’m expecting her to just stand up in the middle of the room one day, holding on to nothing and just look at me like “What’s the big deal?  I’ve always known how to do this, just didn’t want to!”  She also has mastered sitting “criss-cross-apple-sauce” while reading.  She’s always kind of crossed her legs while sitting, but now its intentional in order for her to get closer to what she wants.  Her daddy was very impressed 🙂

We haven’t been having as much struggles with food lately either.  She seemed to just realize food was yummy and now wants everything.  Her morning staple is now 2 Eggo waffles.  Yes, 2 whole waffles!!  She throws a fit if I give her any less.  Unfortunately, she has discovered she can chew much better if she actually uses her 3 front teeth not just attempt to swallow her food whole.  This means, each bite I give her she takes it out and holds it to the front of her mouth to chew.  It takes forever!!!  This morning it took 35 minutes!!  I must be doing something wrong.  Isn’t the same as when your puppy training.  I mean, I’m suppose to let her eat as much as she can in 5 min and then move her bowl to the counter right?  Hmmmm….

Lastly, this coming Friday we have our ENT apt.  Not bad considering our original apt. was set for March 30th.  Helps when the doctor puts in a good word for you!  This will help us determine what steps we need to take with Jana’s sleeping issue.  He might be against surgery right now and we’ll take a different rout.  He might say she needs the surgery ASAP and get it all scheduled.  Both scenarios make me nervous!  She also sees her cardiologist next month for an EKG.  This will make sure the two small holes in her heart are closing properly and that surgery is not needed.  She sees her eye doctor in March, this will determine if glasses are needed yet.  We return to the Down Syndrome Clinic in April for her yearly check up.  And finally, another sleep study is scheduled for June.  Because the wait list is SOOO long for the study, her pulmonologist thought it would be good to get her on the books.  No matter what outcome comes form the ENT, a study will help see if treatment worked.  (Another night hooked up to millions of wires and very little sleep?  Sign me up!!)  She is a very busy girl!

img_8080OH!  One more big day up ahead!  The 28th of this month marks the one year anniversary of her adoption date!!  I’m not considering this her “Gattcha Day” because I feel like June 25th is that.  But it is still a day of celebration!  Planning all of Jana’s things: pancakes, Princess Elena, taking a walk in the stroller, playing some Peek-a-Boo and ending the day with a pile of french fries and Coconut Milk ice cream! (Sounds weird but its lactose free and honestly taste amazing!)  She’ll have a blast 🙂