Miracle.

I have some exciting news for the world! If you remember, Owen was diagnosed with Sturge Weber Syndrome at 4 months old. We accepted it as another obstacle and refused to let that term define this sweet baby. 

We read every google article we found about this condition and we knew exactly what was coming and what to do. We were prepared! Seizures, development delays, brain development issues... The list was endless. We were scared but definitely knew what we were in for. 

On June 4, Owen had an MRI to check the status of the Sturge weber syndrome and check his brain in general as well. We awaited the bad news that we were sure was headed our way. A week later, I got the best call I could have ever dreamed of hearing. My son does not have Sturge weber syndrome. My son does not have any brain abnormalities. My son is perfectly on task and developing at advanced rates. Music to my ears. Believe what you want about it but I'm nothing less than certain that this was an act of God. We had tons and tons of prayers going up for our sweet boy. 

What I will inform you of though, is that sometimes babies are said to not have this condition and then later on, it makes itself known. We are hoping and praying this is not the case but we will not know for years to come. 

Thanks everyone for your unending love, prayers, and support. We wouldn't know what to do without it. 

Owen is still healing from his latest laser surgery but I think it looks spectacular. I am so excited to see how it looks in the end! I am so thankful for the technology to be able to treat port wine stains. 

Owen will go for his glaucoma and vision checkup Wednesday June 19 and we are hoping for great results there also! 

Fathers Day in my shoes

Today has been a difficult day for me to conquer. Today is Father's Day and it is the very first that I did not get to spend with my dad. As I sat in church this morning and watched a little video about dads, I couldn't stop the tears from rolling down my face. All I could think of was Father's Day last year. As my dad, Lathan, and I watched movies in dads living room, I texted my friends and got on Facebook constantly rather than actually spending that time with my dad. If someone had told me that was my last Father's Day with my dad, I would have done things entirely different. But that's the sad thing about life... You never know when God will call you home. I mean... Sure, I spent a ton of time with my dad in the 20 years I got but it will never feel like enough. Here are some pictures of my dad and me! 

Loss

What does it mean to miss someone? Have you ever been driving down the road and thought that your car sounded funny? Well, what do you do? Exactly what I did a few days ago, probably. I pulled out my phone, hit the contacts button, and clicked 'Dad' and put it up to my ear.. I waited.. waited.. and then it hit me... Dad can't answer my phone because my dad isn't alive. My dad has been gone for seven months tomorrow and ill never see him again until I'm in heaven. That's the kind of statement that is almost impossible to understand. It's not fair and it definitely doesn't make any sense. It's the moments like that- when I feel like I can just drive to my dads house and go see him- those are the moments that break my heart all over again. 

Why did cancer have to kill my dad, of all the dads there are to choose from? Why mine? Why did cancer have to take my sons grandpa the day he was born, when there's tons of other people it could have taken instead? That's the question I want somebody to answer. I don't understand why cancer chose him. 

The moments I have to stop and take a breather... Those happen a lot. I'll step outside and see my dads truck in the driveway and think he's here. I can hear his voice. His laugh. I can even smell him sometimes. I hope those never go away. 

"Normal"

I haven't updated in so long. I've been so busy!
Good News! Owen had his EEG on Wednesday and everything came back perfectly normal. His doctor is worried about the difference in movement between his two legs but we are not going to worry about it right now. Owen will have his MRIs and laser surgery on this coming Tuesday June 4 and we will go from there!  Owen uses one of his legs way more than the other when it comes to supporting himself. For example, in his jumperoo, one leg jumps while the other just hangs there. The doctor said this could be a big deal or it could just be nothing. We are praying that it fixes itself and we can just let that go!

We are so excited that Owen's EEG was completely normal. This is one of the first times that one of Owen's test has come back with only good results :) According to his doctor, he is perfectly on task and developing as he should be and in some cases, faster! We are so blessed.

A kid asked me the other day if Owen fell down and I simply said no and asked why she thought that and she said well he has a booboo on his face... After I explained that it was a birthmark, she said oh ok and changed the subject. Easy as that. It's the innocence of kid's minds that adults need to have. I can't stand the "Whats wrong with your kids face?" questions. Why can't you just ask nicely? If you're curious, just ask me what's on his forehead. I'll gladly tell you. But I'll tell you one thing- NOTHING is wrong with my child's face. His sweet face is just as precious and sweet as anyone without a birthmark and in fact, I think it's sweeter and cuter! Just because on angel kissed my baby on the head shouldn't make you be rude ;)

I don't know if I ever said this on here but I had a man tell me how much he has learned from my blog. He said he used to see a kid with a port wine stain and always wondered what it was but simply let it go because he was scared to ask. He said that thanks to my blog, he knows now and he was so glad he took the time to read it! It was nice to read:) Anyway, I hope you guys are learning something by reading and I'll post more soon!

On a side note, there is a book being written that I think anyone reading my blog would be interested in checking out. The book is about a boy with a port wine stain and is inspired by the author's own son. The book is aimed to educate young children about how everyone is different and unique in their own way. Here is the link: https://www.facebook.com/Whatsthatonyourface?fref=ts
If you look very closely on the cover photo, Owen can be found SIX times :) I know he's too young to get excited over it but my excitement probably is enough for both of us!

I know I haven't posted in so long and I should make this one super long to make up for it but I will post more after we get his MRI results next week. Please pray for our sweet boy during his busy busy day on June 4. Thanks everyone:)

Mother's Day update!

My first Mother's Day with my Grammie and Mom

My first Mother's Day with my sweet Owen (6 months old)

 

 

 

 

 

 

 

 Mom, me, and Owen! (And Lexie in the background)

Sweetest baby on the planet:)

 

 

 

 

 

Sweet boy sleeping. When we lay him down, he is laid down like a normal person lol but by the time he wakes up, he makes himself comfortable. Obviously!

 

 

 

 

 

Owen and Nick a few weeks ago!

 

 

 

 

I figured that everyone would enjoy the pictures! I didn't do this blog for the pictures though. Three weeks from tomorrow (June 4), Owen will go to ACH for two MRIs and his second laser surgery. These things are very big in the decision of what comes next for our sweet boy. We are praying for clear results on the MRI and praying that the laser surgery continues to work its magic in clearing his port wine stain. In a little over a month (June 19), Owen will go for his glaucoma and eye checkup. This is a big one for us because they will check for glasses again and since this is the longest he's gone without an appointment, we are anxious to see his improvement in his vision and his glaucoma levels (We hope!). I wanted to thank everyone for their support and the time that they spend reading and sharing my blog. I have made it to 700 views. I am so excited!

 



Owen learned how to sit up by himself yesterday - we were so excited! Since he has Sturge Weber, we get anxious when it is time for new milestones to come up because sometimes kids with this syndrome experience developmental delays. So far, Owen has done everything on time - later than other kids but not too late for anyone to get worried. He was holding his own bottle at 4 months, rolling over at 6 months, can say Bye, and is now sitting up a little after 6 months. Today, he rolled over about 6 times in a row and that's the best he's done at it so far!


Yesterday was my first Mother's Day being a mom myself. It was all in all a successful and enjoyable day. After flowers, a 'Mom' necklace, my favorite candy, new shirts, a meal at Cracker Barrel, and time with most of both our families, I had a great day. Owen even gave me a mother's day present all by himself- he sat up alone. I never thought that I'd be a mom this early in life and it surely wasn't a part of the plan I had set up, but I'm so glad that God had other plans for me. I couldn't ask for a better blessing than to be a mom! :)

More to come! Thanks for reading :)

Why us?

Often, I think... Why did God choose us to be parents to Owen? I often wonder why God trusted us with a child that has so many needs. Sometimes I ask God why he let Owen have so many medical conditions. Sometimes I even get mad about it.. Especially when he underwent a spinal tap at 8 weeks old. That was my worst moment. I was all the way at the end of the Lebonheur emergency hallway and could still hear my little boy screaming (they made us leave). Nick and I both wiped away the tears in our eyes and walked back in there to hold his hand while they did his IV and I wondered why God let those things happen to him. He was in so much pain. And then minutes later, he was fast asleep in my arms and I remembered that God has a special plan for us and especially for Owen. After all that we have been through, I am thankful that God chose Nick and I to be Owen's parents. Owen has changed our lives. He has made our love stronger, our faith stronger, our lives better, our days shorter, and most of all, he has been an extreme blessing to us. When I feel like God isn't around because he "let" these things happen to Owen, I have to remember that Owen could have been born with worse things, or not born at all. I am thankful for my sweet baby every day. So next time you wonder, "Why me?", remember that God does have a special plan for you!

Deuteronomy 31:6

New International Version (NIV)

⁶ Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.”

Mixed Emotions

I never thought that I would have a baby while I wasn't married. I never thought that I'd have a baby in college or at such a young age. I always said "That won't happen to me", but let me tell you from experience, it's going to happen to you if you're not careful. Don't get me wrong, Owen is the best thing that has ever happened to us. However, enjoying a baby while you're both working and doing school is very hard. Luckily for us, we have the support we need to accomplish these things with no problem. I don't know why I thought that I was special and wouldn't get pregnant. But I did. I got pregnant at 19 years old, unmarried, and in college. I was terrified of what people would say about me. I was ashamed when I was pregnant and people would ask about my "husband" and I had to correct them to say boyfriend. I got over it eventually but I felt like everyone looked down on me. I imagined what everyone was saying "Can you believe Kelsey is pregnant?"
My biggest annoyance was everyone always saying, "You'll get married before you have the baby right?" And our answer was always no. I was not getting married while I was pregnant. I still wanted a beautiful wedding and I was NOT getting married with a huge belly. Not happening. I didn't care what anybody thought about it.
All in all, nobody said anything negative to us (except for maybe a few times) and in the end, I couldn't care less that we weren't married before we had Owen. I'd rather be unmarried, have our baby, and then get married when the time is right. In case you haven't heard, the wedding date has been set for July 27 and we can't wait!:)



Updates on our family:

Owen- We went for his 6 month appointment Wednesday. Before we left, Owen was staring and unresponsive for a good while and after a few minutes, shook and jumped and finally looked at me. This led his doctor to believe that he may be having silent seizures so we are booking an EEG. The thing about silent seizures is that he could be having them all of the time and I'd never know because they can last as short as a few seconds. So while we're nervous about what the EEG will reveal, we're glad that we're going to find out now rather than later. Pray for him, I'll update when I know a specific date.
Owen weighs 19 lbs 12 oz and is bigger than 75% of babies his age and is 28.5 inches tall and is taller than 95% of babies his age. He got his shots and was NOT a happy camper.

Nick and Kelsey- Our new apartment called and said that the apartment we wanted is going to be open and ready next month! We are so excited! Though Nick already has a job, he has applied for a few more that fit his personality a little better so pray for the best for Nick too! We both finished our Spring semesters of college with great GPAs and great grades. We're so thankful to everyone that helped us make that happen. Since I took 16 hours of online classes, I'm very thankful to my mom and my grandma for watching Owen for a few hours a couple times per week so I could get my harder work done. I couldn't have done it without them.

Port Wine Stain and Sturge Weber- If you have not heard yet, scientists have discovered the cause of these. We are happy to hear that Nick and I did not cause either of these, it was a gene mutation. I'm not going to quote the specifics but if you want to read it for yourself, here is the link http://news.yahoo.com/cause-port-wine-birthmarks-rare-disorder-found-210739154.html

We are very excited about all of the things that are happening in our lives :)

Another thing we are excited about is the lives that I'm reaching through this blog!!
Thanks for reading!

Port Wine Stain

Port Wine Stain.
Who knew that term would define my child?
I say this because when people see Owen, 90% immediately ask what happened to his face. I don't mind the questions because nobody will ever know if I don't tell them, but I still can't help but notice that it is immediately what people wonder about him.
So what is a port wine stain anyway? A port wine stain, according to Wikipedia, "is a vascular anomaly consisting of superficial and deep dilated capillaries in the skin which produce a reddish to purplish discoloration of the skin. They are so called for their color, resembling that of port wine. It is part of the family of disorders known as vascular malformations, specifically an arteriovenous malformation". I don't care if you don't like Wikipedia, that's what a port wine stain is. Anyway, this is Owen's port wine stain the day he was born. (November 3, 2012)

 And the day he came home (2 days old)... This is easier to see because his hat is off.

I can't answer every question people have about port wine stains and I actually can't answer every question I myself have about port wine stains. I am still learning too!

When I was in high school, I read a book titled "North of Beautiful" by Justina Chen Headley. I remembered reading it because it was about a girl with a port wine stain. When Owen was a few months old, I borrowed this book from my FAVORITE Spanish teacher ever, Mrs. Tarbutton, so that I could read it again now that it actually would make sense to me.

While reading this book, I found a few things that stuck out to me. One particular part was when a scientist asked the speaker how she felt after her laser surgery. This is what it says. "Well, yeah, I feel different," she said in a high, halting voice, "but everybody made such a big deal about my face afterward, it was, like, God, was I really that ugly before?" (32)
This really made me think because Owen had his own laser surgery and everybody does make a big deal of it. But I'd hate to think that later in life, he might feel like she did (since he will have the surgeries for the rest of his life probably).

Another thing that most people don't know about port wine stains is that Owen is supposed to stay away from the sun. He is supposed to have on sunscreen and a hat anytime his sweet face is near the sun. The reason for this is because the sun darkens port wine stains and because of the sensitive skin the port wine stain is on, the sun can actually cause Owen to overheat faster than you or I would.

The reason that he will have laser surgeries probably most of his life is because even if we do this series and clear it up for now, there's a small chance that the sun will NEVER hit his face. Even though we will have multiple surgeries to clear it this time, it's most likely gonna come back and we will have to repeat this a number of times.

The doctors tell you when they go in for the laser surgery, there is no pain and it feels like a rubberband popping their face- just annoying (This is what Owen's doctor told us anyway). So we believe them, right? (For those that don't know, the laser surgery is a pulsed dye laser that lightens the port wine stain without doing an invasive procedure) So here comes the next part of the book that stood out to me, as she was preparing for her laser surgery.
"And then the laser- powerful enough to facet a diamond- began, zapping me over and over within the boundary line of my birthmark from temple to cheek, the inside edge of my nose to my jaw. And then the circuit began again. Experts describe the procedure as feeling like a rubber band snapping against skin, which makes it sound deceptively pain- free. But it's more like getting splattered with a drop of hot oil, sudden and sizzling. Try a hundred - or two hundred and fifty- laser blasts in a single session, and one word comes to mind: deep- fried." (50)
This really made me wonder what it feels like to babies who have this done. Is it really pain free or does it hurt like she says? I don't know, and I probably never will. Owen will usually have anesthesia with his. The last time, he fell asleep without it and was happy as can be when we finally got to see him.

This was immediately before his first laser surgery- he was not a happy camper because he wasn't allowed to eat and if you know Owen, he doesn't play about his food! But he was still happy anyway:)

 This is Owen immediately after his first laser surgery, swollen and sore, but still cracking a smile. (and after drinking an entire bottle in about five seconds- they starved the poor baby!)

 And last but not least, here is our latest family photo where you can see the progress that was made from the laser surgery. His surgery was March 5 and this picture was taken May 4.

So to end this blog post, I will say that I think his port wine stain is adorable and if it weren't for the medical issues it is causing and the hurt feelings that it will eventually cause, I wouldn't worry about getting it taken off. I think I'll miss it when it's gone! It's a neat little mood reader too because when he's mad, it turns dark purpley red.
 

Thanks for reading! I hope you learned something:)

Life as we know it

Since this is my first blog entry, this is going to be long and informative. Let's begin in the 8th grade when I met Nick Myers. Nick was in my Career Orientation class that we had to take. Well, that year I got braces and Nick just had to bug me until I smiled so that he could see the braces that I absolutely HATED. That's where everything started. I never knew those braces would lead me to my future husband. After being friends for quite some time, Nick and I began dating in 2009. Nick and I have been through everything together. While we are mostly total opposites, I do believe that we are perfect for each other. He's everything I'm not and I couldn't ask for a better person to spend my life with.
In early July 2012, I noticed that my belly button ring was fitting funny and was definitely tighter than it used to be. I decided finally to go up to the piercing place and have it looked at. The lady said "Well, the only thing we have that is going to work is a longer bar but if you'll go to the mall, you can buy a pregnancy belly button ring and we can cut it to size." and mentioned to me that this usually only happens to pregnant people. In my mind, I was like no way... there's no way. So anyway, long story short, I took about 12 tests and all were positive. As stupid as it sounds, we were still in disbelief. A few days later I decided to go to the health department and take another test because I still couldn't believe it and sure enough, I was pregnant. She told me I was probably about 12-16 weeks (she estimated) and booked me an appointment with a baby doctor. After going on July 19, 2012, we heard our sweet baby's heart beat for the first time and learned that I was carrying a sweet baby boy. I was 24 weeks pregnant at this point. And we had never known. I barely had a belly at all (I just thought I was getting fat!) and was still wearing my regular clothes. I was due November 10, 2012. After we began telling people, it seemed like I started showing out of nowhere because at 7 months, I began wearing maternity clothes. Anyway, I'm going to jump forward in time a bit to say that at this point, my dad was getting pretty sick and moved closer to us so that he could spend more time with us. As we were getting closer to my due date, Dad was admitted to the hospital. About 2 weeks from my due date, Dad's doctor told us he wasn't going to make it much longer and it sunk in... my dad's never going to meet my baby. I spent every chance I got by his bedside. Even on the days he was in so much pain he couldn't get up, we talked and he held my hand. When he wasn't able to talk anymore, he'd listen to me talk and hold my hand. One of my favorite moments was when I came in Dad's hospital room and said "Dad, I'm going to be induced on Monday November 5!" thinking he wouldn't respond but I just wanted to tell him, and he opened his eyes and smiled. On November 2, my uncle called while I was at a checkup to tell me that Dad wasn't going to make it much longer... and I left immediately and spent the entire day with my Dad. That night at 9:12 pm, my water broke in his hospital room. I told him bye and that I loved him, thinking that he would get to meet Owen. Around 5 am on November 3, my dad passed away. On November 3 at 1:02 pm, I gave birth to a beautiful and perfect baby boy named Owen Reece. Owen was born with this red mark on his forehead that we just thought would go away, but we quickly decided that that was an angel's kiss on his sweet forehead (which is sweet to me because my Dad became an angel that morning). When Owen was two days old, his doctor told us that Owen had a rare birthmark called a port wine stain but that it was okay, it could be treated. That same day, we came home from the hospital and I had to leave Owen to go to the visitation and leave him again the next day to go to the funeral. As hard as it was, I don't regret the choice I made to attend both.  Saying goodbye to my dad was one of the hardest things I've ever had to do. I miss him everyday.
On December 23, 2012, Nick proposed! In the back of my mind, I knew he was acting different but it never crossed my mind that he might be proposing. He proposed at Zoo Lights in Memphis, Tennessee in front of the biggest Christmas tree that I have ever seen. I couldn't believe it!
So here begins our journey with Owen: As I have mentioned, Owen was born with a port wine stain. We thought it was just a cute little hat-shaped birthmark on his face. Wrong. At 8 weeks, Owen turned blue and was sent to a children's hospital and they never really found the cause besides maybe a little reflux. At two months old, we learned that birthmark was causing glaucoma and various other eye problems. At four months old, we were told that Owen had Sturge Weber Syndrome. He also had his first laser surgery at four months old. Because of his history of glaucoma and the time he turned blue, he was signed up for the first MRI that was available. The MRI is to check for development delays and brain problems that are caused by Sturge Weber. Owen will have 2 MRIS and his second laser surgery on his birthmark on June 4. I never knew that a birthmark could cause the things that it has. We are praying for clear results from the MRI. We finally have his glaucoma under control by doing eye drops three times daily.

Nick and I have set a wedding date for July 27, 2013. I picked this date for the reason of 7 and 27 are my favorite numbers! (7-27-13 in case you didn't catch that)

Anyway, Owen is a happy, growing, perfect six month old. He is eating baby food, holding his own bottle, trying to talk, trying to sit up, and rolling over. He can say Bye!

So, this is our life! Thanks for reading:)