Feeling the Love for my Daughter

Adria's 3rd Grade picture - Spring 2018

Truth is, I don't usually think of myself as a parent of a special needs child. Adria is nine years old. She is growing into a beautiful, independent young lady who is so determined and capable.

But there are times when I become keenly aware of her differences. On several occasions this year, these times are precious moments when individuals display an extra special level of care and concern for her well-being.

Let me explain.

Adria is a third grader in a typical classroom setting at our local public school and does not require any special academic assistance. WooHoo!!! She excels in her classes, getting straight A's on her report card, except for a B in Reading the second marking period.

She does receive specialized physical therapy services at school due to her orthopedic impairment (low muscle tone in her legs and need for leg braces), which is very typical in spina bifida children. Adria also goes to the nurse's office every day after lunch to care for her bathroom needs. It's incredible to see how much she's progressed over the last year or so, because now she can catheterize herself without any assistance. Again...WooHoo!!!

The point is, in most ways she functions as many other students but there are still those areas of uniqueness.

The Scooter

Early in the school year, Adria's teachers noticed that she was lagging behind on the walk from her classroom to the playground. It's a decent distance and she was getting fatigued. She has a wheelchair, but we keep that at home and want to encourage her walking as much as possible.

Her gym teacher at the school came up with a great idea to help Adria. She suggested this scooter that she thought Adria might be able to use as a fun and faster way to get to the playground. Of course I was on board with trying it.

Adria's gym teacher got her this scooter to use getting from her classroom to the playground faster. She loves it!

Next thing I know, they ordered the scooter and Adria was coming home from school telling us how much she loved it! Then they took it to another level, so that Adria would not be alone. They bought a second scooter that a friend can use to ride along with her to the playground. Both scooters stay in her classroom and when it's time to go to recess, Adria draws names to see who will help her and ride with her that day.

I just think that's so great and thoughtful. All this initiated by people around her who care. Thank you!

The Cheer Shoes

Outside of school, I was moved by the care of someone who had just met Adria. At the beginning of January, I decided to try something new with the girls, especially since Johanna had been asking about it for a long time, and I signed them up for Gymnastics.

Honestly, I was kind of concerned about how it would go for Adria and how she'd respond. To my delight, she absolutely loved the first class and tried her best with gusto! In fact, Johanna was the one standing in the corner frustrated that she could not do a cartwheel and not even trying for a while. Oh, such different personalities those girls have!

The challenge was that Adria does not have the ankle and foot strength to run around and do activities barefoot like the other children. However, regular sneakers could damage the soft mats and gym equipment. The instructor, known as Mr. Pickle, at The Little Gym was impressed by Adria's desire to try gymnastics and took it upon himself to research and make several phone calls to determine the best option for her to be able to participate. He found that cheer shoes are a type of sneaker with rounded edges that she could where with her braces in the Gym. We went to Shoe Show and found a good pair for her!

Adria tries out the balance beam with assistance at The Little Gym. Her cheer shoes make this activity possible!

For the last few months, she has been enjoying her Gymnastics class every Monday night and Johanna has come to love it too. They are still figuring out how to do a cartwheel, but they've both shown great improvement and confidence to try new things.

So Thankful

I am just so thankful for these caring individuals along with so many others who show love to our daughters and family. This past week was Teacher and Nurse Appreciation Week. Both Adria and Johanna have had wonderful teachers and nurses again this year at school.

THANK YOU ALL FOR PROVIDING GREAT CARE AND LEARNING FOR OUR CHILDREN!!!

Johanna's Kindergarten school picture - Spring 2018

Why I ran a Marathon again. 10 years later.

Runners from across the country, even as far away as Denmark, gathered around Miles the Monster at Dover International Speedway on Saturday morning, October 21 for the seventh annual Monster Mash Marathon.

Among them was me, Julleanna Seely - 35 year old mother of three, participating in my second full marathon exactly ten years after running my first marathon.  I was one of about 200 participants running the 26.2 mile distance through Dover and Little Creek area, while another 300 ran the 13.1 mile half marathon, with all proceeds supporting the Wounded Warrior Project.

I crossed the finish line 4 hours 49 minutes and 41 seconds after the 7:00 a.m. start. At this 11 minute per mile pace, I finished almost an hour and a half after the lead female runner but I was still pleased with the result. I was hot and barely plodding along with no runners around when I came near the end, but I was rallied on those final steps of the endurance run with cheers from my children, parents, brother and mother in law at the Finish!

Knowing my family was waiting at the finish gave me the strength to push on and keep running through those long, hot final miles. My goal was to beat the time of my first marathon, which took 5 hours and 2 seconds, so I’m happy with a finish more than 10 minutes faster. I actually ran the first half of the marathon with a great time of 2 hours 12 minutes, but at mile 16 the weariness started to hit and the second half took much longer.

Much has changed since I ran the Nike Women’s Marathon 10 years ago in San Francisco, California. At that time I was 25 and married 4 years to Adrian, but we had no children yet. Running a marathon was a life goal, even though my longest race prior to the start of training in 2007 was just a 5K, which is 3.1 miles.

I always knew I would run a marathon again, but life brought many setbacks in the years that followed.I had run some over the years since, and even completed three half marathons, but I was not a consistent runner. Earlier this year, I was feeling lazy and at my heaviest I had ever been more than a year post pregnancy. A weight-loss challenge at work in the spring kick-started my desire to get healthier and run more.

When I realized this summer that October 21 would be the ten year anniversary of my big run, I knew it was time. It was my way of facing all those hardships from the past and saying…I am not beat down. I am stronger. I am better. I can do anything with Christ who strengthens me!

In late July, I set up a training program with the Runkeeper App on my phone and went from running about 15-20 miles per month to over 70 and even 117 miles in September.

THE TEN YEARS BETWEEN MY MARATHONS

It was just a few months after the first marathon, when Adrian and I found out we were expecting our first child. It was a very exciting time until an ultrasound around 20 weeks gestation revealed that our baby had a severe birth defect called Spina Bifida, myelomeningocele.  Doctors explained how the spinal cord had not formed properly and protruded from the lower back which could result in challenges including some paralysis often requiring a wheelchair for mobility, lack of bowel/bladder control, fluid build-up on the brain, possible learning delays and much more. Then they gave us the option to terminate the pregnancy. Despite the difficult news, we had also just learned our baby was a girl, and we were prepared to love and raise her, no matter the challenge.

Today, our daughter Adria is a nine-year old third grader who is precious and loved by all who know her. She is a straight A student who is actively involved in her school and community and easily recognized walking through the halls with her colorful leg braces and big smile.

A year after Adria was born, our little family faced another difficult health surprise when my 31 year old husband had a series of three grand mal seizures, causing significant physical and mental pain. Multiple tests and years of doctors visits never pin-pointed a reason for the seizures or a cure, just lots of different medications. Adrian has continued to sporadically have seizures since, often a few times a year and going 18 months seizure free at the longest period.  They were intense and painful seizures, sometimes causing major injury and hospital visits. 

Financial struggles as a result of medical expenses and a bad housing market resulted in us selling our home in Delaware in 2010 and moving to Indianapolis, Indiana. We had some great experiences there and one of the big blessings during this season was that our sweet Adria learned to use a walker for mobility at age 2, then she took her first steps without a walker just before turning 3.

But the challenges continued in early 2011 when I had a miscarriage at 10 weeks gestation that resulted in emergency surgery – a painful and heart-breaking time.   

It was not long before I became pregnant again and beautiful baby Johanna was born at the end of that year. She was healthy and a great blessing but in the early months of her life, I found myself battling a severe case of post-partum depression. In the heart of that lonely Indiana winter, Adrian had back-to-back seizures that left him unable to help much and I spent weeks of my maternity leave crying and battling health insurance issues.

Adrian’s youngest sister came to live with us and be a Nanny to the girls, so I could go back to work. She learned to clean up Johanna's regular spit up and care for Adria’s unique needs, like catheterization and putting on her leg braces. Still, the 12+ hour distance between us and our family back in Delaware was too great.

In late summer 2012, we moved back east to a charming community in Chesterfield, Virginia where we would be just 3 hours from our parents. I worked for the same company during these moves, with my sales ability allowing fairly easy transfers within Ryan Homes, one of the largest home builders in the country. Adrian really loved life in Virginia, but when his seizures reappeared in a serious way, we knew we needed the support of family just minutes away.

Only 8 months later, I took a new job with a local home builder in the town of Greenwood where our parents live and we moved back to Delaware in spring 2013. Two years later, we were blessed with a precious baby Boy. Judah was cute as could be and brought renewed life and hope to his discouraged Daddy.

My pregnancy with him was much harder on my body than the girls and I gained a lot more weight, but he was happy and healthy and my heart was full of thanks. And then life’s challenge became balancing the demands of a special needs child in school, an energetic pre-schooler, a nursing newborn and a full-time job as sole income provider!

With Adrian’s unfailing support and expertise as a stay-at-home Dad, we found a rhythm of life and 2016 was by far the most successful sales year of my career. It was also the year we decided to build our New Home, a place we would plan to stay for many years and raise our family. A home built on the same land where Adrian ran through the woods as a child. A place of hope and healing for us.

We moved into our Dream Home in March 2017.

When summer hit, and I realized that this year marked 10 years since I took on the challenge of running a full marathon, I reflected on these last 10 years. All the pain, all the trials, all the joys, all the moves, all the unknowns, all the life they have held. I felt like this season needed a book-end. I took on the challenge of a marathon before some of life’s greatest challenges came along. I was strong enough to take on the challenge now!

So I did. I woke up at 6 a.m. three mornings a week, and I ran. And on October 21, 2017 I ran 26.2 miles (with some walking) and completed my second full marathon. It was hard, but I was victorious!

As I look to the next decade of my life, I am full of HOPE.

Hope that my husband can live a seizure-free life.
Hope that my daughter Adria can continue to succeed in school and her life pursuits, not letting spina bifida hold her back.
Hope that all my children can live and grow in a consistent, stable home environment.
Hope for my own dreams of writing more and continuing to Run. 
Thank you, God, for Hope.         

Health Insurance Disaster...and Trump

A week has passed now, since I stayed awake until 3 a.m. on Wednesday watching TV.  Like millions of Americans, I was fascinated by the presidential election results and the response of the media as Donald Trump took the lead and eventually gave his victory speech.

I was among those who were thankful for this result, even though I live in Delaware, a state that's gone Democratic blue in every election since I was 10 years old. But noone really cares about Delaware's 3 electoral votes. Still, I vote.

I am not one of those Republicans who thinks Hillary is evil. She has merit, experience and good leadership qualities. And sure, I believe a female president would be a great step for our country. But, I fear her liberal agenda and what it would mean to people like me - the hard-working middle class Americans who pay big taxes and make this country tick.

The Healthcare Factor

And the single, most influential issue that guided my vote was our current Health Insurance Disaster.

While there were many times this election season that I was disappointed and even disgusted with things I heard from Trump, I believe that he will work with the Republican party to strengthen and support America's working class. I hope and pray that his leadership will be able to make very positive improvements to our nation's healthcare.

As we all know, it was a huge agenda for Obama's administration, but from my perspective (and that of many others that I talk to) the Affordable Care Act has turned into a Disaster!

And my guess is that the timing of our health insurance renewal notices played a big part in getting many of those Red voters out on election day.

The very week before the election, we received a brochure in the mail encouraging us to "Get on the FAST TRACK with Confidence." That felt like a slap in the face.

The brochure cover that inside told me that my monthly premium was going up over $400!
I felt anything but the elation this guy portrays...

It was from Highmark BlueCross BlueShield. In the most delicate way possible, it explained the "3 EASY STEPS" for continuing our health coverage for next year. Apparently, my current plan has been replaced.

A table compared my plan from 2016 to the one they are proposing for 2017. Allow me to share some highlights:

• 2016
• $3,000 Family Deductible
• $7,000 Out-of-Pocket Maximum
• 0% co-insurance and hospital services after deductible
• $1,512.50 Monthly Premium
• 2017
• $2,000 Family Deductible
• $12,000 Out-of-Pocket Maximum
• 20% co-insurance and hospital services after deductible
• $1,937.05 Monthly Premium 

Good News: Our deductible would go down $1,000/year.

Bad News: My monthly premium would increase over $400!!!! Everything else is worse coverage. Plus, co-pays are higher.

GRRRRRRRRRRRRRRRRR!!! How is this even legal? Last year, my premium went up over $300 a month! In just the last two years as Obamacare has taken root, my insurance premiums have increased almost $800 a month MORE THAN what they were for the same type of coverage. That's simply ridiculous and cannot be labeled "Affordable Care".

I work very hard and provide a good living for my family. And as my blog talks about, we have significant medical needs every year due to my daughter's spina bifida and my husband's epilepsy. It burns me to my core to feel punished and backed into a corner with limited options.

So I sat in my bed late at night, after my three precious children had fallen asleep, and shared my heart and frustration with my phone. Then I shared the video on Facebook.

Soon I had a little army rallying around me. I knew that I was not alone in this mess. More than 120 friends shared my post and within days it had been viewed over 6,000 times! That's not exactly going viral, but that's much more response than I usually get.

Here's my video. This was off-the-cuff, so it's not polished or anything.



That was just a few days before the election. So again, I have hunch that millions of Americans finding out that they're going to struggle to afford basic health coverage played a big role in the election results.

And as I was filtering through the barrage of nauseating banter on all media about Clinton and Trump, a friend of mine shared openly about why she voted for Trump. And one of the comments summed it quite well I thought.

Reasons why Trump won

So for those who just cannot understand (cough, cough...the media) why so many "white women" voted for...gasp, Trump...here's one mom's reasoning:

1) he was the only pro-life candidate on the ballot, 

2) there are a lot of SCOTUS [Supreme Court] picks in play, and those last for a generation,

3) my healthcare premiums went up more than 20% this year for the third year in a row (and I didn't get to keep my doctor, as promised), and 

4) I wanted to send a strong anti-establishment message to the federal government and this might be my last chance to do so for a very long time.

There you have it. Why many of middle class America voted for Trump.

It's not that we love him, agree with all he says and all his policies. No. It's simply that given the two options, we believe he is the better choice for our future and our families. Clearly, there are about 60 million Americans who disagree.  

My few final thoughts 

In terms of our health care disaster, there are some good aspects of Obamacare, so I don't actually believe a full repeal is the answer. There is no easy answer, but something MUST CHANGE to stop premiums from going up 20-30% every year. We're about to send our country back into recession with this mess.

I am exploring other options for health insurance, but Delaware only has two private insurance companies. Aetna is our only other choice and a similar plan would have a premium over $1800 a month. Other options like Medi-share, don't appear to be a good solution due to our expected medical expenses and costly medical supplies that our daughter needs on a daily basis.

I want to stress that I am incredibly thankful for a great job that provides a wonderful living for my family. And I am thankful to have access to good health care. This is not to be taken lightly. Without insurance, we would have gone bankrupt. It is a privilege to live in a country that offers both quality care and insurance. But costs are getting way out of control.

And finally, Trump is just a man. I don't expect him or his team to solve all our nation's problems, but I do expect them to improve some major issues. And I do believe that he will work hard to do that. More than that, I hope and pray that in spite of his polarizing comments, Trump can prove himself a capable leader and that in time the divisiveness that is rampant among us will subside.  

8 is Great...mostly

I remember being 8 years old. I loved it. Sitting in my third grade class, I drew and retraced the infinite 8 shape again and again, believing that 8 was such a fabulous age that we should be able to take a break from school for that year. Seriously, I thought this. I was an A student and fairly social but awkward.

Now, I have an 8 year old daughter. It's still hard for me to wrap my head around this. Adria turned 8 on September 8, being born in 2008. (Almost as cool as her Aunt Lil who turned 8 on 8/8/88).

A friend told her it was her golden birthday - your birthday when you turn the age of your birth date. Adria loved that and frequently announced it.

Adria blows out 8 candles on the Poop Emoji cake that Daddy made, at her request. Haha!

She realized this year, after having it happen in kindergarten and first grade too, that she might always be the first one in her class to celebrate a birthday, since it falls just after the start of the school year. This also makes her possibly the oldest child in her second grade class.

Short and Sweet

Of course you wouldn't know it from her height. She is one of the shortest in her class. Her petite stature still causes people who don't know her ask if she is in Kindergarten. She gets exasperated by this. But still there are times she stands in front of the mirror at home, making sure she looks good for school, and complains that she looks like a Kindergartener.

At 3' 9" tall, she's only got an inch or so on her 4 year old little sister. Let me tell you, this makes clothes shopping a challenge - especially for pants. Plus, at close to 58 lbs. with a soft belly on her, we struggle. She really needs a size 8-10 around the waist, but then the legs on those... are sooo long. We have my mom hem pants up for her, but it's easier just to buy skirts and dresses for school. Adria doesn't like pants much anyway, she thinks they look boyish.

8 year old Adria kisses her 4 year old sister Johanna after school

From a spina bifida parents group online, I know that it's super common for our special kiddos to be shorter than average. It's mostly due to the low muscle tone in their legs and how that inhibits bone growth. Adria's feet are also the same size as her little sister's.

Adria's Birthday

We made sure our girl felt special on her 8th birthday. As I drove her to school that Thursday, her Grandpa (my Dad) met us and gave her a Rose. Her class sang her Happy Birthday to start the day. My mom surprised her at lunch, enduring the noise and heat of the school cafeteria that doesn't have AC. Adria's school nurse, that she visits everyday, gave her a special TY plush toy. Then her Granny Seely met me at the school in the afternoon to hand out Emoji cupcakes and snacks to her class.

Adria and mommy had fun making these Emoji cupcakes to share with her class on her birthday.

That evening I treated Adria out to a special mommy-daughter date night. She said, "Man, it's like today has been all about ME!"  Oh, she loved it.

I brought her to dinner at Red Lobster, where she ordered her own personal snow crab legs. She could not believe she got them all to herself. And of course the wait staff sang to her, as we shared her special dessert. She was in heaven.

Birthday dinner with mommy at Red Lobster. She loved her Snow Crab and dessert!

We finished her big day with a big event. Getting her ears pierced! She had been interested for a while but was always afraid of the pain. A few weeks before she told me she wanted her ears pierced for her birthday, so I surprised her. She was still nervous, but it was the cutest thing listening to her talk herself into being brave. And barely a flinch when the lady at Piercing Pagoda inserted her pretty pink stars.

The look just before getting her ears pierced...

During ear piercing... She did not make a sound

And after...She loves her pink stars!

Adria is quite pleased with her new look and very diligent about getting me to clean them every night, so they are healing great!

Not Feeling Well

After the high of her fabulous birthday, something happened the following week. Every day before school Adria was fussy and complaining of being tired. She lost her appetite. One day her school nurse called, and she was sent home with a fever over 101. She had pain in stomach and side. We thought it was strep throat or a UTI, but a trip to the pediatrician ruled out both of those. In the end, it must have been a viral thing or a cold. We're not sure.

She's feeling better, but my girl has been struggling emotionally. At school, her teacher says she does great and is the most social one in class, even to the point of being too chatty and laughy. She comes home with math and writing papers that have an A at the top.

But at home, we are having to work hard to encourage her nightly 15 minutes of reading. Many mornings she says she wants to stay home. She is more sensitive about her differences, not appreciating that people always ask why she wears legs braces. Her reply is simply, "Because I need them to help me walk."

Adria's braces (AFOs) through the years. She gets a new pair every year, sized specifically for her. Each of these features a unique design that she chose and represents precious steps and milestones in her journey with spina bifida.

Being a "Spina Bifida Person"

She has also been complaining more than ever about her necessary potty routines. Earlier this year, Adria achieved a huge step in independence. She learned to catheterize herself! This was BIG. We and the school nurse still provide some assistance, but she can sit on the potty and do this on her own now. It's wonderful! However, Adria dislikes having to do it. She's starting to be frustrated that this is part of her life. Four to five times a day...every day...this is how Adria must empty her bladder.

Even worse is the bowel routine we have to do every other night. It's a great system, called Peristeen, that made all the difference in reducing bowel issues. She is accident free most days, though she did have a bad stinky incident at school last week.

Peristeen requires an enema and sitting on the potting for at least 30 minutes while her bowels empty. Yeah, it's kind of gross and uncomfortable. And we don't like having to do this either, but at this point it is the best solution for enabling her to live as "normal" as possible.

It can be heart-breaking though. When she'll sit there and cry. And with a twinge of anger say, "I wish I wasn't a Spina Bifida person!"

She says this often. Ugh...what is a mother to say? It's tough to know, but I try to be understanding and encouraging.

We love our Adria so much. We are so proud of how independent and confident she is. We knew the "age of awareness" would be a tough time for us all. We pray that she can stay strong and positive and continue to defy the odds and be the amazing girl we've cherished since the day we found out she was going to be a "spina bifida person."

Here's to hoping 8 is great for her too.

Goodbye First Grade

Today was the official last day of the school year for our girls. It was a beautiful, sunny day where Johanna played outside with her pre-school friends.

However, Adria was at home lying on the couch. We did not realize it then, but her actual last day of school was two weeks ago on May 26 - the day before she went in for her wound closure surgery. She has been lying down at home since then because her follow-up doctor appointment last week showed that the area with stitches was struggling to heal. She needs to stay off her bottom and limit any transfers, so we dress her in bed then carry her to a couch every day.

Unfortunately, Adria missed several fun activities at the end of her First Grade year because of this. There was an Author's Tea Party where the book her class wrote was presented, Movie Day, an Aloha Party, Field Day, a walking class trip to the Library, and Raiderpalooza (bouncy house end of school year party).  I was really bummed that she had to miss all this fun with her friends, but we tried not to talk about what she missed. We've tried to focus on all the positive.

Like the gift bags and care packages that came from several friends and family, each one full of activities and books that she could enjoy while lying on the couch. She loved them all! But I think her favorite gift may have been the stack of cards her teachers sent home with me last Friday. Every student in her class decorated a personalized card and wrote her a special note.

Adria would read the cards and often sigh, "Aw that's just so sweet. I don't know what to say!"

I chuckled the other day when she said, "Man, mom, it's like ever since I've had the surgery...It's been all about me!"  Bedrest is not so bad when people around show they care and miss you.

Adria has also taken this time at home to learn how to send iMessages from her iPad. I loved it when I got a message from her full of Emoji love that asked, "Are you having a good day at work today?"

We have been impressed with how good of a mood Adria has stayed in and how she's complied with her doctor's order for bedrest these last two weeks. Part of what kept her calm and willing to lie around was our incentive. If she rested and let her body heal, she may be able to go back to school and say goodbye to her friends before summer break.

Adria's first day out of the house in over a week when she visited her friends at school yesterday.

And so she did. Yesterday, Daddy took Adria to school for a pizza party her teacher's hosted for lunch.

Adria was able to say Hi and Goodbye to the school nurse she saw every day along with her great teachers and all the friends in her class. I was not able to be there, since I was on a special pre-school field trip with Johanna, but it sounded like Adria had a great time.

Each of her friends shared something they had missed about Adria, when she was not at school, then they each came up and gave her a big hug. To minimize the risk of any damage to her surgery wound, Adria spent the entire visit in her wheelchair, but she did not seem to mind a bit. She was just excited to see her friends again! Plus, she thought it was great Daddy-Daughter date.

Adria poses with her First Grade class and teachers during her visit yesterday.

And maybe a little sad later, since that had to be goodbye for the summer. She's going to miss them all so much, but she loooved getting out to see them.

We believe healing is happening, and we are so thankful for your prayers. Here's to hoping she has almost total healing by the time of her next doctor visit on June 21.  She's got swimming and summer fun to look forward to...along with a big family trip to Canada coming up soon!

And...here's Johanna having fun on her full day trip to XBos Family Fun Center in Smyrna yesterday!
She's going to miss preschool too, but she'll go back for one more year of PreK this fall.

Surgery for Adria

"Mom, you shouldn't have surgery. It's really boring," Adria said tonight while lying on the couch.

Sit as little as possible and lie down at home for almost a week. No swimming for 2 weeks. No sports for 4 weeks. That's the doctor's orders after Adria's surgery on Friday. It's not ideal for our little seven year old, who's disappointed to be missing a week of fun at the end of the school year, but we are so thankful she's doing great!

At home Adria has not been in pain and seems to be recovering well, but she needs to limit her activity and time sitting for her body to heal properly. Especially considering, the doctors encountered a little surprise during her surgery.

She has been pretty fortunate when compared to many children with spina bifida, as this is the first surgery she's had since she was only six months old. But now she is old enough to be aware and apprehensive of what's involved with "surgery."

Johanna and Adria painting picture frames. Trying to find fun things to do while lying down can be tricky,
but we are trying to keep Adria still this week to allow her body time to heal after surgery.

Why did she need surgery?

You are probably asking this question (especially if you missed the recent post Steps Forward...and Back).

I'll try to summarize without getting too detailed. Adria lacks sensation on some areas of her bottom and feet, and early this year she developed a sore that became an open wound in the high pressure area where she sits. We've been treating it daily and seeing doctors for months, but it simply would not heal.

Finally, the plastic surgeon said it was time to stitch it closed. She had wanted to give it time to heal naturally, because with stitches, there's still a risk it could open again and possibly be worse.
Thankfully, the wound had never gotten infected. Yet, after almost four months, it was time to take action.

For the average person, this wound would be very painful. But this type of wound does not usually develop because we feel pain when the pressure gets too much, and we adjust our sitting position accordingly. Adria lacks the nerve endings to give her these cues, thus leading to this problem on her bottom.

Telling Adria

We did not tell Adria about the surgery until a few nights before Friday. She likes to know what is happening, but we knew she would be anxious about it, so we waited.

Those two nights before, she was pretty weepy and nervous. I think it was more the fear of the unknown and being in a room without us. The hospital had a helpful video for children to watch in preparation for surgery, but Adria was still afraid. Thankfully, she was still able to rest well and be distracted at school.

Surgery Day Surprise

We did it. We woke up at 4:30 a.m. on Friday and made it out the door around 5:30 a.m. That's kind of amazing for us.

Adrian and I headed north to A.I. duPont Hospital for Children with Adria. Johanna and Judah woke up early with the commotion, but stayed home under the watchful care of Adrian's mom.

The children's hospital really does a great job of putting children and parents at ease. Adria got her arm bands, and they even gave one to her special bear friend Foo-Foo! She loved on that bear and her turtle friend Celia, who both went back to surgery with her, while mommy and daddy waited outside.

Adria smiles just a few minutes before going back with the anesthesia team.
Her "babies" Foo-Foo and Celia were great comfort to her.

Adria and her babies.

The pre-op area was a buzz of activity with dozens in blue scrubs milling about. There were many questions and vitals taken before Adria went back for the anesthesia. They gave her some calming medicine before they took her back and next thing I knew, her eyes were droopy and distant. I think that's the last thing she remembered until we saw her again about 2 hours later.

Waiting is tough. You know your child is being operated on and you just wait. They have a screen with colors and codes for you to follow your child's general progress, but you'll go crazy if you stare at it too long. We had a nice interruption during our wait, as a friend just happened to be up there for an appointment with her son at the same time.

Surgery started around 9 a.m. A lady gave us an update halfway through, then sometime after 10:30 a.m. the plastic surgeon came out to talk.

It was finished! Adria was doing good but still needed time to come out of anesthesia.

The surgeon explained that while operating, they found that Adria's tailbone was just under the skin where the wound had occurred. That helped explain why the wound struggled to heal, because of the extreme pressure from the unusual angle of her tailbone. So they removed it!

She said it was about an inch of bone that was non-essential for Adria and would not be missed. It should also help prevent this issue from happening again.

Adria no longer has a tailbone!

That was our surprise, but it seems like it's no big deal. Her tailbone was at a much different angle than normal, so it caused more harm than good.

Recovery

We went back to the PACU (Pediatric Anesthesia Care Unit) to be with Adria while she continued to come out of anesthesia. Poor thing was so dazed and sleepy for a while. It upset her. Even the blue raspberry ICEE slushy they gave her did not help much. She was very surprised to realize that the surgery had already happened and almost disappointed that she did not remember it. Silly girl.

She lie in the hospital bed with an IV in her arm cuddling her Foo-Foo. For a minute, my imagination took over and fast-forwarded 20 years and thought of seeing her in a bed cuddling a newborn baby. That was weird. And kind of emotional.

Around noon, Adria was improving enough to be discharged and put in her wheelchair. She was able to eat some lunch before we headed home.

We THANK everyone who prayed for her and showed support through text messages and Facebook love!!! Adria appreciated reading the messages with me before and after her surgery.

She even got a surprise package in the mail from her school nurse this weekend! It held some activity books to help keep her occupied during this "boring" recovery period.

We are so thankful she is recovering well!

Steps Forward...and Back

Adria giggled loudly in halls of A.I. duPont Hospital for Children last Tuesday. She was watching a video of herself from over three years ago, where she was walking along in her braces wearing just a diaper.

"Hahaha, I just love my cute, chubby self!" she giggled, much to the amusement of her orthopedic doctor, physical therapists and her parents.

The video was filmed in the Gait Lab of the hospital, where they film children "ambulating" who have an abnormal gait. Adria's first video was made when she was three years old and had just learned to walk without her walker! It was really cute and touching to watch that video again.

Adria walking without her braces in the Gait Lab last Tuesday

NEW LEG BRACES = GOOD AND BAD

The doctors were looking at the video to compare how she's walking now. She recently got a new pair of leg braces (Ankle Foot Orthotics) that we were so pleased with at first. They are stronger than her last pair, which we had several issues with - they cracked because of her active lifestyle and she often complained of pain in her legs, However, Adria is struggling more with balance and running in her new leg braces.

Her physical therapist from school especially noted the difference. Adria had been making good progress in ascending and descending a few steps without holding onto the rail (yeah!), but now she has regressed and is struggling with some skills and balance.

The doctors at AI believe that the setbacks are due to Adria adjusting to the difference with the new braces and that in time she will regain her former abilities and continue to grow.  They think she looks great!

Adria's orthopedic doctor and physician's assistant check out her hips and legs.

They did suggest that it could be beneficial for us to get her some "Walk-Easy" crutches to use when walking longer distances, such as hikes through the woods. It's another good option for her to try and stay as active as possible, then just using her wheelchair for big outings like the Zoo or amusement parks. So, we'll look into those crutches more this summer.

Adria did get to go back down to the Gait Lab with the yellow "road" and land of Oz mural and take a new video. She rocked it, walking and running with and without her braces! It's just amazing to watch her progress.

UPCOMING SURGERY

We had another doctor to see on Tuesday as well. The pediatric plastic surgeon.

This doctor is new to us, as Adria has developed a surprising, new issue in recent months. She basically has bed sore/wound on her bottom and the stubborn thing will not heal!

Since February, I've been applying prescribed ointments and dressings daily. It's stayed clean and uninfected, but it simply will not close up and heal on its own.

The reason she got this in the first place is somewhat mystifying, but it has to do with the fact that she has limited sensation on her bottom. When at school, she would sit in a hard chair for prolonged periods of time without adjusting her position and a sore developed.

This would not happen to the average person because we would feel pain or discomfort from too much pressure in the same spot and simply shift in our seat. But Adria does not have some of those nerve endings because that lower part of her spinal cord never formed properly in my womb.

It's one of the impacts of Spina Bifida that we did not account for, but ever since this happened, she's had a nice soft cushion on her seat at school and her wonderful teachers make sure she gets frequent breaks.

But last week the doctor said it's time to take a more proactive approach in the healing of this wound. It needs to be closed surgically...

I did appreciate that the plastic surgeon used very vague language when talking to us about this with Adria in the room. Adria gets easily upset about needles, pain, and likely would have freaked out if she really knew what's going to happen next Friday. It will be an out-patient surgery but will require anesthesia.

After the surgery, Adria is NOT supposed to SIT for a WEEK!

She can walk some but will be restricted to lying on her stomach and side most of the time to allow for complete healing. She is totally going to miss school that week, but they did not want us to wait until school lets out - the surgery schedule is already full in June.

Yesterday, I got a called from the hospital reviewing Adria's health history and asking tons of questions in preparation for next Friday's surgery. The lady even recommended a video that the hospital has made to help parents and children know what to expect. It's really helpful actually. Here it is:





This will be the only the third surgery that Adria has had. I say ONLY because many children with Spina Bifida have had more than a dozen surgeries by her age! But Adria was only six months old for her last surgery...which was a much more intense procedure. It was literally surgery on her Brain. She was only the 8th child in the U.S. to have this operation that provided an alternative to the Shunt, commonly used to treat Hydrocephalus. Read about it HERE.

We are believing this upcoming surgery will be a simple procedure and she'll come home with us that same day.

Honestly, I've only explained this whole thing a little bit to Adria. She would be too upset if she knew the full extent of what's going to happen.

SO PLEASE DON'T SAY TOO MUCH TO ADRIA ABOUT THIS SURGERY. Thank you.
Just say an extra prayer for her on May 27.

EXCITING TIMES

You can't keep this girl down, though. She's got a couple of events before the surgery.

This Saturday, Adria's hoping to participate in her second Spelling Bee - she won Third Place in her first one a couple months ago!

And next week she has a Girl Scouts awards program. She joined a Girl Scout troop at her school this year and sold more than 100 boxes of cookies this spring. She's got some great natural sales skills (like her mama :)

Perhaps most exciting is the fact that Adria just started being able to Catheterize herself!! 

This is a huge step in independence for her. She's been afraid to try for so long, but I told her that if she wanted to try any Day Camps this summer she would have to learn to take care of herself. Apparently that was motivating for our social butterfly, and a few weeks ago she did it on her own for the first time! She's been getting more used to it since and is pleased with her new ability.

We are so thankful for Adria and her great progress forward, in spite of her challenges. She sometimes says, "Mom, I wish I wasn't a spina bifida person."  It's tough to hear this and know how to respond, but she's got a great spirit and we pray she'll always keep her sense of determination.

And always keep taking steps forward, even if she has set-backs from time to time.

Mommy feeling blessed with her babies on Mother's Day!

Best things come in Small packages

"I don't want to do potty time tonight!" Adria said with frustration. Then she started to cry, "Mom, I wish I wasn't a Spina Bifida person."

My heart sank. I can't take this away. I can't make it better for her. I can't promise that she won't always have these nightly, uncomfortable routines. I can't even relate to what her life is every day. I can only try to encourage her through it all.

She stood there weepy-eyed, draped in a towel by the toilet. I gave her a big hug.

"I know it's tough, Sweetie, but I'm so proud of you," I said, "Do you want to talk about it more?"

"Well, I want to go potty on my own like everybody else. And, I wish people wouldn't call me LITTLE!" Adria added. "There's only 2 people in my class shorter than me."

Adria is very short for her age. But she's right, there are two other sweet little girls in her class. So she's not alone and I tried to encourage her that it's ok to be little.

Daddy told her, "The BEST things come in SMALL packages!!"

I loved it. I hope she can hold onto that.

Adria strikes a pose in her "co-worker" style school uniform, new boots and mommy's hat, gloves and glasses. Stylin'

Because after our hug and little chat, we had to do the same uncomfortable potty routine that we do 4-5 nights a week. It's called Peristeen, and it's an advanced enema system with a pump that enables us to flush out her bowels and large intestines. Usually, Daddy and I work together with Adria as that makes it easier on all 3 of us. That part takes just a few minutes, but then Adria has to remain seated on the potty for 30-45 minutes to allow her stool to come out.

It's stinky and unpleasant, but she uses the time to read books or watch cooking videos on the iPad. And when she's done, we catheterize her for the fourth and final time of the day, emptying her bladder before going to bed.

It may be no fun, but this system has dramatically improved things for her - she has now been wearing panties instead of diapers for a year. She still has an accident at school once in a while, but she wears a pad to help with that. It's great that she doesn't have stinkies often in her diaper anymore...that's sooo NOT cool as a 7 year old.

And this little first grader is quite smart. Adria just brought home her report card and got straight A's once again this second quarter! She doesn't even realize what that means, she just enjoys school and expects to get most things right...haha. That may be hereditary ;)

Happy girl posing last week after our only big snowfall of the winter.

Moments of sadness and grumpiness are tough, when she seems keenly aware of her differences, but I am so very encouraged by the incredible young lady she is becoming!

It's true, some of the best things do come in small packages.

At 7 years old, Adria is only an inch taller than her 4 year old sister Johanna (who likes to try on my boots...)

Adria's new pair of AFOs - Ankle Foot Orthotics. She might not like wearing them sometimes, but at least they can be fun and colorful!

Plus, Daddy found these amazing boots that tie and zip up the back. Yeah for cute shoes that fit over leg braces!

To read more about our journey with bowel management programs, here are some links:

Answer to Stinky Situation

Panties are Priceless

Mermaid Magic

Learning to Catheterize a Toddler

A Day at the Children's Hospital

When the School Nurse called

A New Friend Like Her

"Mom, that was the BEST day of all the BEST days!" Adria proclaimed at 10 p.m. on Saturday night as we left the home of her new friend.

It was a special evening as Adria, Johanna and I got together with a family we had randomly met months before at a local festival. We had walked past a sweet, young girl with leg braces sitting on the curb next to her wheelchair eating some chicken fingers.

We said "Hello" and Adria was pleased to learn that she and the girl named Mallory had much in common. They were both 7 years old, liked the color pink, and were born with Spina Bifida! Mallory's mom and I were excited to discover we live less than 30 minutes apart, so we made plans to get together. And 3 months later we finally did!

Mallory and Adria meet at the Apple-Scrapple festival in October

Since that day, Adria has talked about Mallory often. It really made an impression on her to meet another girl like her. She doesn't have any local young friends with spina bifida, and she doesn't really remember the SB friends we had met in Indianapolis.

More often lately, Adria sighs and gets sad about the fact that she's the only one at her school that has to where leg braces and can't go to the bathroom like the other kids. Being with Mallory on Saturday night was a special treat for all of us. And we found the girls have other things in common...they LOVE Shopkins and Pizza!!!

Shopkins...they're all the rage with little girls today!

We went out to dinner and while Adria and Mallory enjoyed their slices of pizza, Johanna got along well with her 5 year old younger brother and I enjoyed talking with her mom Nikki.

Mallory, Mitchell, Johanna and Adria have fun at dinner together.

It's kind of great to be able to talk with another mom who completely understands and has experienced the broad spectrum of things associated with a child who has spina bifida - Level 2 ultrasounds, hydrocephalus and shunts, back and head surgeries, AFOs (leg braces), catheterization options, Peristeen bowel program, urinary tract infections, wheelchair fitting, needing diapers at school, urodynamics studies, and so much more! We could totally relate and shared ideas and experiences.

Mallory is several months older than Adria, so she is in second grade. She can get around at home with her walker and primarily uses her wheelchair when in public. In 2014 Mallory was the Eastern Shore Ambassador for the March of Dimes organization that raises funds and awareness for babies born prematurely and/or with birth defects.

After dinner, we watched the musical production of "You're a Good Man, Charlie Brown" at a local high school. Adria and Mallory sat side by side and enjoyed the show.

Two girls enjoying the show...and comparing their AFO styles (leg braces)

The adventurous younger siblings had fun but didn't sit still too well :)

Mallory says hi to "Sally" from the Charlie Brown show 

Johanna poses with PigPen

Just before leaving Mallory's home, I took Adria to the bathroom to catheterize her - we have to about every 4 hours during the day, which is the same for Mallory. When I was taking care of Adria, she looked at me with a smile and said, "I bet Mallory knows what we're doing, since she has to cath too." Simple things like this, knowing that she has a friend who understands what her life is like, really meant a lot to Adria.

And so Adria had her official BEST DAY EVER...for now.

Today, January 20th is the "International Day of Acceptance" encouraging our society to continue embracing people of all abilities and becoming more educated on how to empower and support them and their families. I'm believing for great opportunities throughout life for these 2 precious girls!

A Look Back at 2015

As we start a new year, I always like to reflect on the highlights of the year past...the new experiences, changes, and lessons learned.

For 2015 there is one moment, one hour really, that stands out above all the rest. 

Meeting our son, Judah. 

Just after I delivered him, they gave him a quick wipe over and handed him to me. He was perfectly adorable and for the next hour he laid on my chest - skin to skin - in that special bonding time I had heard about but never experienced like this with my daughters. I didn't know how much he weighed or how long he was, but it didn't matter yet. He was in my arms.

Yep, that was definitely the highlight of my year! But there were many other moments to remember for each of us.

Our Family of 5 Photo - November 2015

Judah

Our baby boy joined the family in late April, now 8 months old. He has been a happy, healthy boy bringing great joy to everyone in our family. He's totally Daddy's boy...they hang out all day most days. His sisters adore him and are ridiculous with the smothering of kisses. He's mostly tolerant. And Mommy thinks he's the most handsome little guy in the universe!

He's becoming a hefty dude, weighing about 20 pounds now. In just the past two weeks, he's finally mastered sitting without toppling over and has been rolling, but just today he CRAWLED for the first time! And just this week, he pulled himself up to stand in his crib. He sleeps fairly well but still likes to wake me up through the night...Yawn! His two-tooth grin and big brown eyes will melt you.

My Two Handsome Men

Johanna

Ever the spice in our family, Johanna just turned four years old in December. She has as much energy and vitality as ever. Sometimes we love it, sometimes we....well, let's just say she can get into some messes. Judah is her biggest fan; he laughs at her dancing and jumping all the time. It's pretty hilarious!

After attending preschool 2 mornings a week earlier in the year, she started going to the same school as Adria this fall 4 mornings a week. She is just one of 2 girls in a class with 12 boys (yikes), but she holds her own fine and is making friends. Her best buddy is still a girl from church who is just one day younger. Her favorite things are playing "dress-ups", play-do, going to the beach and visiting people. I often hear her saying "You're the best sister ever!" when she and Adria are playing together, then a few minutes later they're arguing...Ha! Jo-Jo is so much fun and oozes personality.

Sweet and Spunky Johanna - 4 years old

Adria

Our oldest turned seven just a week after starting first grade this fall. She struggled the first couple weeks because she missed her Kindergarten friends and routine, and all the math and reading was "so must harder." But she has excelled, made new friends and loves her teachers (we do too!) It's been a joy listening to her improve as she reads.

A couple big events from her year were playing soccer in the spring and participating in the Little Miss Apple Scrapple Pageant in October. Then, she and Johanna both did a Kids Run in Pennsylvania where she met Deena Kastor, a famous marathon Olympian.

Her health has been good overall with the Peristeen bowel program allowing her to be mostly "diaper free" for the past year. She's had some accidents at school, but the nurse takes very good care of her. We are so thankful. And her big progress in her weekly physical therapy has been that she can now hop on one foot! Amazing!!! Her latest interest is in making cooking videos. Though she sometimes laments that she is different because of her need for leg braces and catheters, she does not let spina bifida hold her back. We are so proud of her!

Bubbly and friendly Adria - 7 years old

Daddy

Adrian's year has been an interesting one. He has excelled to a new level in the sport he loves - Disc Golf. He participated in many weekend tournaments, some affiliated with the Professional Disc Golf Association (PDGA), and even WON in his division a couple times last year! 

This sport and the camaraderie with other guys has provided a great outlet from his daily duties of full-time Dad. I am always amazed at what he accomplishes in and around our home, and how he often realizes the needs of our children better than I. Adrian also assisted family members with home improvement projects, including flying down to Texas to visit his sister Angie and install flooring in her newly purchase home last fall.

Unfortunately, in 2015 Daddy's seizures returned with dramatic flare during vacation. It was craziness and upsetting, but it brought us to a new place of trying to be better prepared and more accepting of this bizarre condition we have battled for the last six years. That's right, Dec. 26 was the six year anniversary of his first seizure...it's now been a battle for half of our 12 years of marriage. We have great days and down-right terrible days, but you know, we always get up again.

Mommy

Aside from the amazing gift of carrying and delivering a child, I had some other big events this year. Work has been very busy, and I'm so thankful for that. It was a strong year for new home sales with the local Builder where I've now been for 2.5 years. Our company won a few big local awards, including being voted Best Southern Delaware Home Builder by a regional magazine! I got my 15 seconds of fame with some air time in our TV commercial, and the outlook for 2016 is good. 

From a fitness perspective, I had big ambitions to run a half marathon in October - but my body was not quite ready for that. Instead, I ran a 10K (6.2 miles) race at the Runner's World festival in Bethlehem, PA and had a great time doing it. I really love running events, but man is it hard to make time to run with 3 little ones in the house!

Our Family

We did not take a big week-long vacation in 2015, but we enjoyed several family excursions:

• The Pocono Mountains, PA in February (a trip with my company) - the girls love hotels with indoor pools and Snow
• The Shenandoah Valley, VA in June where we camped in KOA cabin - but this was the trip where Daddy had a seizure
• Dutch Wonderland in Lancaster, PA - it was a hot summer day for our first visit with the kids to this family-fun amusement park, but baby Judah was not too impressed
• Runner's World event in October in Bethlehem, PA - we girls successfully ran races, then I took the children to the Crayola museum while Daddy went disc golfing
• Christmas Lights at Longwood Gardens in December - a day trip with Granny and Grandad for one of the best light displays on the east coast

It was a year filled with great blessings yet sprinkled with challenging moments. We are ever thankful for our family and the opportunity to continue on this journey together!

Hoping you and yours have a blessed 2016.