5 Going on 15

Her energy and spunk is unmatched. She is a vibrant free spirit, daring you to cross her path. She has a sensitive heart, easily touched by loss or sadness. She is a princess and a fashion diva. She is a dark-haired, blue eyed beauty. She is 5 going on 15.

That's our little Johanna Belle!

Johanna on the right with her cousin Sophie, who also has a December birthday and will be 9.

CELEBRATIONS

Yesterday we celebrated her fifth birthday. She shared cupcakes and snacks with her friends in afternoon pre-school, that's in the same public school where her big sister Adria attends second grade. And in the evening, Mommy rushed home from work to pack up the girls, helium balloons, and decorations and grab the cake and fruit tray. Then drive south to the Stratosphere Trampoline Park, where we barely made it in time for her 6:30 party. But we did!

Johanna and a few friends spent the next hour and a half jumping and running around a building full of trampolines. Pretty fun once you got past the overwhelming stench of stinky feet and sweat. Ha! I was thankful the party came together successfully after a day, where I had "dropped the ball" on so many other things that I may as well have been swimming in giant ball pit...

Trampoline Park = perfect place for Johanna to let her energetic side be free!

And there were LOTS of trampolines and some good friends

Party Time

Last Saturday, we enjoyed a little celebration that my mom planned for Johanna and her cousin Sophie, who turns 9 in December. It was a special day for my sister and I, along with our three daughters to spend together with my mom at the American Girl store in Tyson's Corner. They have a very pink Cafe with a birthday luncheon menu that also includes a personal cake, ice cream and fun goody bag for the dolls, who sat in their booster seats with us.

Three cousins enjoying a special birthday lunch at the American Girl Cafe and store last weekend!

When the day first started our birthday girl, Johanna, was in a grump-tastic mood...Irritating...but thankfully, she calmed down and we were all able to enjoy this unique experience.

SENSITIVE FASHIONISTA

I say that Johanna is 5 going on 15, not because I want to rush her growing up in any way, but because this girl is always surprising me with the mature nature of what she wants.

In her perfect world, she wears a dress with tights and high heels every day. But that's not always appropriate, so we often have the "what to wear" battle. She loves to try on big sister's play make-up. She wants to dye her hair, paint her nails, and she regularly wears about 10 bracelets on her wrist. She has even asked me how soon she can start shaving her legs!! Spare me...

At school, her teachers say she is their little fashionista. Her style is bold, colorful and nearly always involves a dress or skirt. Jeans are an absolute NO. Only leggings are acceptable.

Johanna loves to sing and dance, and she's provided great entertainment for her little brother Judah for the full 19 months of his life. He's laughed at her more than anyone else and is generally patient with her extra strong hugs and forceful kisses.

This year we've seen Johanna begin to excel in her learning. She's taken longer than her sister to conquer ABCs and 123s but is making great progress. She'll spend time looking at books and magazines, though the iPad is definitely preferred.

I love her adventurous spirit. When we brought the kids to Hershey Park this summer, she wanted to ride all the FAST rides that her big sister was afraid of. And she was deeply disappointed that she was too short for the roller coasters, except for the smaller one.

Yet behind this wild, fashionista exterior lies a soft heart full of Love. She often randomly says, "I love our family! I love everyone!"  She's become the first to volunteer to say prayers at the dinner table, even if it's a big family dinner with many gathered. She remembers her great-grandma (my maternal grandmother) who died two years ago and who she only saw a few times.

Just recently Johanna said, "I really miss Great-Grandma. I don't remember what she looks like. I really love her a lot." Then tears fell down her sweet cheeks. There are moments when she cries easily because her heart is touched. Even a child's story I read the other night about a boy and his mother growing up had her crying. Ok, ok, I shed a few tears too. It's a sensitivity she carries that is not always obvious.

And tonight, as is the case every night, she has her two favorite blankets with her in bed, the pink bear and green fuzzy froggy blankets (that were passed down from when Adria was a baby). They provide her comfort as she sleeps. Because sometimes she is afraid of Monsters.

But it was a conversation about fear and monsters with Daddy, that ultimately resulted in her praying to ask Jesus in her heart a few months ago. She used to wake up yelling in the night, but it's very rare since she asked Jesus to be with her.

Yes, she is just now 5. I see a powerhouse in the making in Johanna. The future is hers to embrace. She walks her own unique path and goes after what she wants with a vengeance.

I try to remember this will serve her well in life, when it's driving me crazy at home :)  Thank you, Lord, for this precious, healthy little girl.

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.

Twenty Years in the Making

This is a story about a life-long friend of mine. An amazing woman with a special miracle.

Tall and slender with a long braid draped over her shoulder, Marisha chatters away with a charming southern accent. She picks up her fussing baby girl and holds her close, allowing her to nurse while she continues to share stories and funny quips about life.

Such a simple, even typical, moment I experienced with her last month. Yet an incredible story lies behind it.

Marisha's youthful look belies the fact that she is 42 years old. And 11 month old Rachel, is her miracle child, born to her and her husband after 20 years of marriage. Incredible.

For years and years they had prayed for a child. She watched and supported her two sisters as their families grew and they experienced mothering new life multiple times.

Finally, after 15 years of marriage, Marisha conceived and carried a baby boy. She was filled with joy. She was a mother. Praise the Lord! Her prayers had been answered.

But...she never had the chance to cradle her son. At 16 weeks along, there were complications and her pregnancy suddenly ended. Rian Jonathan went to heaven on 7/23/10.

"I never thought after all the prayers for him that he wouldn't stay here. Even as I laid in the hospital room after he was stillborn, I felt the prayers of the Saints and that peace of God all night." 

Marisha shared these words about that heart-breaking night. She said she stayed awake all night because every time she closed her eyes, all she could see was the small form lying at the foot of her bed.

Now, she held the love of a mother. And the ache of love lost. But the hope and belief that one day she would be able to hold and raise her own child.

Marisha kept believing. A few years passed by. And during that time, she had to say goodbye to her own mother Joy, a woman who was a very special kindergarten teacher to me.

In spite of her losses, Marisha held onto hope and continued to pray for a baby when others doubted.

In 2012, she had a vivid dream about having a daughter named Rachel and a younger son named Ian. Another three years later, part of that dream became reality.

By the grace of God, that pregnancy test plus sign showed up again in early 2015! It was happening. She had not even received shots or special treatments leading up to getting pregnant. How exciting! But still nerve wracking as she prayed over that life inside her to grow healthy and strong.

As she was praying for the new life growing inside, a close relative had a new baby. Unfortunately, life choices left them in a situation where they were unfit to parent the baby. Marisha stepped in to help provide care. Suddenly, she was both pregnant and caring for another baby! Yes, very tiring.

Marisha knew in her heart that she was carrying her daughter. Even before the ultrasounds confirmed it, she knew because of the dream.

Her miracle baby entered the world on 9/19/2015 at full-term, a beautiful and healthy girl. At long last, Marisha and her husband held their baby Rachel Denice. More than twenty years after their wedding.

"God healed my broken heart, but it was completed when Rachel was born!"

This week Rachel turned one year old. She's mommy's girl with bright eyes and a big smile. Like any baby, she's been a lot of work. She wakes up nearly every hour or two in the night. Her tummy does not tolerate many foods, so she's still nursing regularly and only eating tiny bits.

On top of the normal demands of learning to be new mom, Marisha had a big responsibility added to her plate a few months ago. There are now two young children from the family that needed support, and Marisha is their full-time guardian. That's right, three little ones under the age of three are in her home at once! Fortunately, her mother-in-law has moved in to help.

It's a different picture than what she dreamed of life as a new mom. And some days, drain her completely, especially when rest at night is so elusive. But she is a mother. Her heart's desire has at long last has been fulfilled. For that, she gives glory and praise to God.

And still holds onto hope for a son to hold.

Marisha and her miracle baby Rachel

Our Canadian Adventure

Eight day vacation. Seven passports. Six little cousins. Five days of travel. Four months of planning. Three different airports. Two countries. One fabulous Adventure!

That's the quick summary of our big family excursion to Canada this summer. A month ago, we were driving through Alberta and British Columbia, Canada to visit Adrian's older brother Jeremy and his family. On June 30 our children met their Uncle Jeremy, Aunt Jessica and three cousins - Girls age 6, 12, 13 - for the first time!

We were also thrilled to have Adrian's parents along with us to be a part of this special occasion as well as provide GREAT assistance in traveling with three young ones.

Selfie with my man on the Skywalk in Jasper National Park

Day 1: Let me just tell you, juggling passports and boarding passes through international security for a family of five is not for the faint of heart! We flew from Philadelphia, PA to Toronto, Ontario to Edmondton, Alberta. I was pretty impressed with AirCanada - all flights were on time and we had individual screens for movie watching in-flight. The only hiccup was confusion over passports for my husband Adrian and my daughter Adria, due to their similar names...we were last to board the plane in Philly because of it!

Checking in with Air Canada - Expedia had failed to note that Judah was traveling with us (Infant in Lap)!

We got it resolved but we think that contributed to confusion with passports at the boarding gate in Philly.

Judah looking out the window uncertain on his first flight. He snuggled in with Mommy and did well.

We gained 2 hours due to the time zones, and that night Adrian took us to a destination he'd visited years before - the West Edmonton Mall. This is not your average shopping mall. It is HUGE, boasting 5.3 MILLION square feet, 800+ stores, plus attractions like the world's largest in-door amusement park and a water park with a massive wave pool. We were only able to walk around for little while after a day of travel, but the girls were impressed and loved being able to enjoy some rides at the amusement park.

Our party of 7 outside Galaxyland amusement park inside the West Ed Mall.

Spinning on the teacups with my girls!

Day 2: Our party of 7 hopped in our rental, a white Toyota Sienna minivan (like we have at home), and drove through beautiful Jasper National Park in Alberta. You should add this place to your bucket list. Hours of gorgeous scenery and impressive snow capped mountains. Adrian and I had driven through this park nine years ago, so it was a special treat to bring our children with us this time.

I tried to take a panorama view of the stunning blue water in the glacier fed lakes.

Plus, we tried out the Glacier Skywalk - a popular new tourist attraction that enables you to walk along a mountain side and out onto a solid glass walkway with a ravine far below! I was impressed that Adria braved it, but not for long.

See that crazy looking thing sticking off the side of the mountain?

That's the glass skywalk on the far right with the ravine far below!

The kids were a little nervous, but they did go out on the walk for a short time - this is just before going on the glass.

Day 3: We drove 5 hours through quiet Canadian country from Jasper to a town in the heart British Columbia where Jeremy's family lives. After years of dreaming and saving, they recently built a new home on a lot that provides a peaceful view of the valley. It sounds like construction has been quite challenging and there is still work to be done, but it's a charming home that provided a lovely retreat for us.

Brothers chatting in Jeremy and Jessica's living room, with large windows showing off the great view.

Jessica has a beautiful garden from which we enjoyed fresh vegetables for the many delicious meals that she prepared for us. The oldest daughter cares for their 3 cows and milks one every day. All three girls are active speed skaters during the winter and are now getting into running, along with their parents.

Meeting the cousin's cows

COUSINS MEET FOR THE FIRST TIME!

Day 4: July 1 was Canada Day - often celebrated much like America's July 4th. The young cousins spent hours giggling and playing together, including time in the pool and on the trampoline. Judah practiced his recently acquired skill of walking everywhere and was deeply fascinated by the staircase. Good conversation was shared among the adults. Granny and Grandad treasured taking it all in and babysat in the evening, so we parents could have double date night.

Enjoying Pool time on the only really hot day while we were there.

The girls enjoyed their Russian Matryoska doll collection.

Day 5: We all drove to a nearby mountain called Sinkhut, that has a fire watch tower. Some of us hiked to the top. It would have been too much for our little ones, so they were able to take a ride up a rough dirt road. The view was STUNNING from the top. You could see countless miles of mountains and countryside. The wind and mosquitoes were also rather impressive - ha!

Our Canadian Seely family!

Everyone enjoying the top of the mountain

Day 6: It was a quiet, rainy Sunday. We relaxed inside, trying to treasure our final day with family that we may not see again for years to come...

The kids watch with interest while their older cousins practice French horn and clarinet.

Day 7: The 4th of July. We packed up the rental mini-van, said our goodbyes early, and drive 9 hours across Canadian countryside back to a hotel by Edmonton airport. We never saw moose on the trip, but we did spot some good-looking caribou that day. Thankfully, the children traveled fairly well with the girls snuggled in on either side of Granny while Grandad and I took turns driving. Needless to say, we did not see any fireworks or Red, White and Blue flying around us that day.

Caribou on the road

Day 8: Head to airport at 5 a.m. Fly AirCanada back across the continent and two time zones to safely arrive in Philadelphia after 4 p.m. And yes, the worst part of the trip was getting stuck in rush hour traffic on this final leg of the trip home. But we did finally make it home close to 8 p.m.  I was back in the office the next morning and worked 6 days straight...

Johanna relaxing on the plane. The girls enjoyed flying.

It was all worth it. Priceless memories made. Wonderful conversation shared. Adria is already asking me when we can go back to Canada!!!

A special time...who knows how many years may pass before we all get together again.

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.

IN HIS WORDS...You are Unique

Adrian shares some words from his heart today.

Daddy and his boy on Judah's first birthday, April 28.

IN HIS WORDS

Each and every one of us is unique. We may find others that we share many similarities with, but at our core we are our own unique person. And just as unique is the story that we have to tell. Most of us have heard the phrase "everyone has a story to tell," which refers to the fact that everybody has or is going through a struggle. But does that detract from the emotional effect that it has on us as individuals? I don't believe so. I believe that it makes it even more important because it gives us all something in common.

The more I talk to people, I find that most of us fall into one of two categories.

The first category is to want understanding. We want our situation, our struggle, and how it is affecting us to be understood. Especially by those around us that love and care about us. The truth is that because we are unique and our stories are unique that no one can truly understand what we are facing and how it is affecting us. Even those who are facing the same struggle cannot really understand. They can only relate to some aspects of the struggle we face. However, that does not mean that we keep it all to ourselves and don't talk about it.

The second category that the rest of us fall into is trying to ignore the struggle we face. If we don't acknowledge it, then it doesn't exist right? Sadly, neither category is the answer and provides no relief for the struggle we face and so often leads to depression and substance abuse. When I say substance abuse we automatically think drugs and alcohol, and yes those are still very prevalent today. But what about food, sugar, or what I consider to be the most widely abused substance today - Screen time. Maybe substance abuse isn't the correct term but you get my point. TVs, smart phones, iPads..... How many of us stick to the suggested 2 hours a day limit of screen time? Not an accusation, just a thought. Look at what you do with your life and then ask yourself why.

Personally, I am finding that the best way to face a struggle is to begin with acknowledging it. Accept that it is here, it is currently part of your life, and no amount of denial will make it go away. Neither will any amount of pity make you feel better.

Next, find those in your life who can and will walk with you as you journey through your struggle. Even though only you can fully understand what you are facing it doesn't mean that you should face it alone. In fact, you can't. I have been struggling with seizures now for more that six years. My exceptional wife has seen most of them and stood by me through the struggle of change and recovery for six years. She cannot fully understand the struggle I face but it is her unfailing love and support that makes me able to continue to struggle instead of give up and give in to a vegetative state. And then I think of the support that our families have provided. Consistently supporting our requests whether they understood them or not. So surround yourself with people who care and don't hesitate to ask for what you need.

Next, and it's something that it has taken until recently for me to realize, don't be so absorbed with your own struggle that you fail to recognize others. As I have stated before, my seizures have dramatically changed me. Other than a few scars, it isn't externally that obvious but internally where it actually matters, everything has changed. I have been so absorbed with the apparent monumental combined struggles that Adria and I are facing along with the moves, births, and job change that we faced that I forgot that there are other people with real issues in the world.

A while ago I was sharing with someone the most recent developments in our ongoing family drama and after I had walked away I realized that I had not bothered to ask them about their day, family, or anything. As I began to think over the last six years I realized that this had been a fairly consistent trend and it made me ashamed. So remember to take time for others as you face your own struggle.

Looking over the past seven years and the struggles that we have and are facing it makes me realize how much I truly care about others and their struggles regardless of how big or small they may seem. I believe that caring is the path toward healing. Even if that healing is simply finding peace for our situation. Healing is not always returning to how things were.

I have also learned the importance of being heard. I recently read that healing begins when a person feels heard. How often do we not speak because of what we are afraid we will get told in return? Can we listen to someone share their heart and mind without trying to "speak the truth in love" in return?

So take time to care, to listen, to laugh, to cry, to love, to pray. Turn off the TV, shut the lap top, put down the phone. Go for walks, go for coffee, go out with friends, and always and forever, go disc golfing.

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!

Still hoping for answers...for an End

We are still hoping for answers. Still hoping for an end to Adrian's seizures.

It has been a while since we shared about seizures and epilepsy. We wish that were because nothing has happened, that things are "normal"...

The truth is, Adrian has had a couple more seizures since we shared about the one that happened at Panera Bread last June. Once at the airport while on his way to visit his sister in Texas last fall. Once just before bedtime at home early this year. That one and the post-seizure psychosis was very intense, but we had a neighbor and family come to help.

Because of this recent activity, our visit to Adrian's neurologist at Penn Medicine in Philadelphia this month resulted in some different conversations.

Adrian was already in the middle of a medication change. Partly because the Vimpat he's been taking is not proving to be effective anymore, and because our health insurance put Vimpat on the "non-formulary" drug list leading it to cost us about $800 for a 3 month supply instead of the $40/month we were paying. No thanks!

These are tough transitions because people can't just suddenly start and stop seizure meds. It's a gradual addition of a new drug while remaining on the other, then gradually reducing the original med. It can really mess with the body. Adrian's been adjusting pretty well, but some days are rough.

But the conversation we had with his neurologist's physician assistant did NOT fill us with hope that this new medication will be the "solution" to his seizures. She said that about 30% of the population of people with epilepsy are resistant to drugs completely stopping their seizures. If two or three different drugs have not been successful, it's not likely that any drug will work 100%.

Adrian is now trying his 5th medication in 6 years....

Her facts left a little sting as we continue to seek answers on this journey. But she is a knowledgeable and kind provider, so we trust her insight.

So then what? If Adrian is not likely to be seizure free on medication, what options exist in the medical world?

We are seeing one of the leading neurologists in the country, who spends much of his time in research at Penn Medicine. They have an epilepsy center that allows them to keep patients for several days or a week to closely monitor seizure activity to see what's happening in the brain during an episode.

They intentionally provoke a seizure to occur in this controlled environment through means such as flashing lights, sleep deprivation, medication reduction and more.

The P.A. recommended that if Adrian has a seizure while on this new medication, he should consider participating in this study.

On the one hand, it would be wonderful to have a more clear picture of what's happening in Adrian's brain when a seizure occurs and how that could help better treat the issue.

On the other hand, the idea of sitting in a hospital for a week with wires attached and video cameras watching your every move while KNOWING that a seizure is coming...is pretty horrifying to us.

At this point, we are gearing up for the possibility of doing this sometime in the next year. He's going to have current MRIs and EEGs done this summer, since it's been three years since his last ones. Then, we'll see what happens and what we decide.

For now, he's still increasing the new medication and getting blood work done to make sure it's at the proper dosage for his body.

In spite of this on-going issue, Adrian continues to lead our family with love and strength. He amazes me everyday with his work ethic - He doesn't 'help' with housework...he does about 90% of it! He cares for our year-old son with sweet tenderness and understands his needs better than even mommy. And he is the involved father that our daughters need.

It would be wonderful to get some better answers. But it will be most wonderful when he can live years without this cloud lingering so close by.

Adrian and I out for a date nigh last week. I can't tell you how much I appreciate this man and all he does for our family, especially while facing daily health-related challenges.

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!