2014: School, New Home, Travel, Baby and More!

The Christmas letter did not happen this year. One nearly always accompanies our Christmas cards, but they barely made it out in time for the holiday. I was behind on everything!

Most gifts got purchased just the week before Christmas, and most presents were wrapped on Christmas Eve. But it all worked out, and I tried not to stress it.

PRECIOUS CHRISTMAS GIRLS - photo used on our card

Some would call it procrastination. I call it "November was wildly busy, and I was sick the first half of December" plus work has been super busy and there's two little people and a life inside me that require most of my extra energy.

So before the house awakens this morning, I thought I'd take a few minutes to myself and look back over what has been a full, yet refreshingly peaceful year in our home. No major move. No job change. No hospitalizations.

But there were big events! We watched our pre-schooler graduate. We did buy a house again. We traveled some. And I am pregnant!

Here are the highlights from our 2014: 

JANUARY

• Daddy enjoyed the wonderful opportunity to travel to Europe for the first time! He and his sister Leona visited their sister Angela, who guided them on exciting adventures through Spain, Italy and Gibralter.
• Mommy stayed home and shoveled mounds of snow and built a couple snowmen with the girls in what was a very white Delaware winter...which made our first viewing of the movie Frozen even more exciting
• Adria impressed us by displaying her increasing confidence and mobility at a local Fun House!

FEBRUARY

• We went on a Snow-Tubing trip with my company in the Pocono Mountains of PA
• The Sochi Winter Olympic Games opened on my 32nd Birthday, and we became pretty faithful followers of the events.

MARCH

• We rejoiced in Adrian experiencing one full year seizure free!
• I saw a strong start to the spring selling season with my job in new home sales, while our company had a new showcase home under construction that I had helped plan and design.
• We watched Adria succeed in pre-school, yet gain the maturity to ask tough questions like "Why am I Different?"

APRIL

• We returned to visit our home in Virginia for the first time, since our sudden departure in April of the previous year, and renewed the lease with our tenants...they have been a huge blessing!

MAY

• The girls appreciated a special trip to the Please Touch Museum in Philadelphia, and Daddy enjoyed a full day of Disc Golf with a friend at Tyler Park.
• We glowed with pride as Adria walked confidently down the aisle to receive her Pre-school Diploma in her first graduation!

JUNE 

• Adrian and I participated in our first running event together - He agreed to join me since it was more than just a 5K run, it was a muddy obstacle course and we participated with friends to support MS.
• Daddy flew to British Columbia, Canada to help his older brother Jeremy in building the new home they had planned for years!
• Adria starts putting on the pressure to have a Baby Brother!

JULY

• Adria lost her First Tooth, thankfully Daddy was there to help her!
• After looking around at other housing options, we decided to purchase the home we had been renting in Bridgeville and have my company build a Sunroom addition. 

AUGUST

• Johanna is officially potty-trained with very few accidents!
• In one of several full days we spent at A.I. duPont Hospital for Children, Adria was fitted for her first wheelchair AND proved herself to be quite intelligent after 4 hours of psychological testing.
• Mommy's work hosted the Grand Opening of our brand new Idea Home and Design Studio, and we saw nearly 1,000 visitors through our doors that first month!

SEPTEMBER

• Adria started full-day Kindergarten at the local public school and has loved being a student! Johanna also started pre-school two days a week.
• We celebrated Adria's 6th Birthday enjoying beautiful views of the Delaware Bay while staying at a friend's beach house in Broadkill.

OCTOBER

• BIG NEWS: Adrian and I announced that we are expecting another BABY!!! And we heard the heartbeat of this new life for the first time :)
• We adventured in the outdoors with a family camping trip to cabin at nearby Trap Pond State Park.

NOVEMBER (a very busy month!)

• Our little family took a long road trip to Savannah, Georgia, where Mommy completed a 13.1 mile run in the popular Rock-n-Roll Half-Marathon! I ran as part of Team Spina Bifida, raising funds and awareness for the Spina Bifida Association.
• Adria completed her first competitive race the next day, showing impressive determination as she completed the 1/2 mile run (last place was just fine!).
• My husband and I celebrated 11 years of marriage and even managed to get away together for an overnight in Washington, D.C.
• We traveled to New York over Thanksgiving to be with family and say our final goodbyes to my Grandma, whose journey ended after 94 full years.

DECEMBER

• All four of us got hit with a bad winter cold that passed around our family for much of the month. Mommy's cough got so bad, it strained my diaphragm and along with lifting little girls, knocked 3 ribs out of alignment!
• Eventually, we were able to celebrate Johanna's 3rd Birthday with a little Ariel princess party.
• We started Adria on an all-new bowel program that we hope will significantly improve the challenges she faces with this part of her life.
• AND FINALLY...We learned that a healthy BABY BOY is on his way!

As always, it was a very full year for this Seely household. We enjoyed many fun adventures and new experiences. We saw positive improvement with both Daddy and Adria's health challenges, but are still impacted by them every day. We are thankful for the blessings and being at the same address as last year!

Praying you are blessed with a safe and happy NEW YEAR!

A Graveyard Visit

Daddy shared a special moment with his girls yesterday. One of those simple yet sacred moments.

Together they brought flowers to Daddy's oldest brother. The uncle they never met.

The marker for a life that ended far too soon, lies in a graveyard just a few miles down the road from our home.

Adrian spotted a dozen yellow roses amidst the rack of flowers at the store that morning. They reminded him of his brother Christopher - those were his favorite flowers.

Though Chris died more than 10 years before our oldest daughter was born, his memory is still a part of our family. Adrian thought this would be a good opportunity to show the girls his love for his brother and how he is missed.

I was not there when they stopped by the graveyard, but it touched my heart in a way I can't quite explain when I saw the pictures of our daughters placing the bright yellow bouquet next to his headstone.

The girls had smiles on their faces, as they happily carried the flowers and gently set them down.

They might not fully understand what they were doing, but I know Adria understands that Daddy had another older brother and she sometimes hears stories about her Uncle Chris who lived on a ranch in Texas. He was a quiet, very intelligent young man with a kind heart.

But it is tough to think about too much. To know how much Adrian and his family miss him. Chris was just 23 when his life surprisingly ended. Thinking about their little graveyard visit makes me cry giant tears that soak my shirt sleeves...and he was not even my son or my brother.

Still, I am glad that Adrian took time to share his love and the precious memory of his brother with his daughters. I can't even begin to imagine the emotions it stirred within my husband. It was a simple yet sacred moment.

Looks like a Healthy Baby Boy is coming!

There are few things that compare to the wonder of seeing a little life moving on a screen - a life that just a few months prior did not exist but now is growing inside of you. It is a gift, a treasure not to be taken for granted.

Of course, if you're like my husband, you may not know what you're looking at half the time. Ultrasounds can't always provide the most clear picture, but they can provide a lot of information.

The profile of our baby...if you can tell :)

In the weeks leading up to my 19 week ultrasound, people often asked the question, "Are you hoping for a boy this time?"

To that I'd reply something like, "That would be great, though I really love my two girls and would be fine to add another to the mix. But Adria is quite convinced it's a baby brother!"

And the person would follow with a comment most pregnant women have heard, "Just as long as it's a healthy baby, right?"

Honestly, I sometimes hesitated with my response to this. Yes, I want and pray for a healthy baby...more than I care what the gender is...but it's not a requirement for my love and acceptance of this child.

When you've been there in the ultrasound room and watched the doctor point out the birth defect on your growing baby and learned how it will impact the rest of your child's life, it is a moment of fear and the tears fall. All else fades as your mind struggles to grasp the fact that you are not carrying a "healthy baby". But there is movement, there is life and that little baby girl is yours.

So when the doctors asked the question about Adria, "Do you want to terminate the pregnancy?"...because this is not a "normal baby"... the answer is NO!  Perfectly healthy or not, this is my baby.

That is what we experienced when I was 20 weeks pregnant with our first child, who is now an incredible little six year old girl named Adria. Still, we hope and pray for a healthy baby.

A Baby Boy?!

As you can imagine, with an experience like this in our history, my husband and I headed to my Level 2 ultrasound on Tuesday with a mix of excitement over seeing our baby and finding out the gender, combined with tinge of nervous anticipation of what the ultrasound might reveal.

When I was pregnant with Adria, we had to travel about 1.5 hours to Annapolis, Md. and Newark, Del. to get a high level ultrasound at a Maternal Fetal Medicine specialist. Since then, Bayhealth has opened a new MFM practice in Dover, which is much closer to home.

Ironically, Adria had an ultrasound done much like Mommy's exactly one week before mine.
Her urologist has this done once or twice a year to take a look at her bladder and kidneys.
Having spina bifida often leads to issues of incontinence, weak bladder, and reflux in the kidneys.

It was a nasty, rainy day with my husband Adrian and I both coughing and sneezing as we went in for my ultrasound. The tech said it would take about 45 minutes for her to gather all the information needed, as she knew our history since we had met with a genetic counselor prior to that day.

We told her that we were VERY interested in finding out whether baby was a boy or girl!

As she started, right away we saw a nicely shaped skull and a fluttering little heart (always good signs). A few minutes in, she got a view of the legs and bottom and said, "It looks like you're going to have another girl!"

Okay, Adrian and I just smiled at each other. No biggie. We know little girls.

"Hold on," the tech said, "The umbilical cord is in the way and kind of blocking the view." For a few minutes she kept moving her device around my belly, trying for different angles. "Oh wait, look at that," she said, "I was wrong, it is a boy! Sorry for leading you the wrong way with that."

Oh really? Well that's pretty exciting! If she's sure.... The tech was pretty confident after that, we are carrying a little boy. Yeah, Adria will be excited! (Even before I was pregnant, she was asking for a little brother.)

The ultrasound continued, and we watched closely, paying special attention to the spine when she took those pictures. The techs are not supposed to tell us if they find anything abnormal, that comes directly from the doctor. But, we now have a good idea what spina bifida looks like in an ultrasound and did not see anything on our baby that gave us reason for concern. Having a child with a Neural Tube Defect, does put us at increased risk for having another baby with something similar, but I had taken high doses of Folic Acid prior to conceiving which greatly reduces the risk.

At the completion of the ultrasound, the doctor came in and confirmed that our baby looks healthy and she sees no indication of spina bifida or other defects! That's the news we wanted to hear. She said that there was a small difference in a chromosome in the brain, but thought the baby looked good and did not give us reason for concern.

We left feeling doubly blessed...to be expecting our first SON... and to be carrying a healthy baby!

After we left the ultrasound, we bought this cute pair of BLUE shoes!

Later that day, when Adria came home from school, she was happy to hear the news but she asked, "Is he in our family now?" I think she was hoping mom was bringing him home...outside my belly. He's not ready to meet us yet little girl! She'll have to wait until sometime around May for that.

But Adria called it from the start. From the moment we told her Mommy had a surprise, she knew it was her baby brother :)

An Answer to Her Stinky Situation? PERISTEEN

Wearing diapers to Kindergarten is embarrassing. Most six year old girls have been out of them for years, but that has not been an option for Adria. And it bothers her.

Just last week, she came home from school telling me a story about how her skirt had gotten loose on the playground and was falling down, revealing her diaper. Adria said one of her friends was chasing her around, trying to grab it and that was not nice! She did not cry about it, but I could tell she did not like it. (Neither did I!)

And then there's her little sister Johanna, who just turned three but has been out of diapers for about six months now. Every day, Jo-Jo gets to put on her Disney princess or Tinkerbell panties, and Adria must wear her "boring diapers" as she says. I think big sister is pretty jealous of little sister.

But we fear Adria's issues would be far worse if we put her in panties, even with a pad. Because of her spina bifida and the incomplete formation of the nerves in her lower spine while she was growing in Mommy's belly, Adria does not have the ability to control her bowel and bladder. In other words, her brain does not get the message when she needs to use the potty, nor can her body control "holding it" or pushing it out.

Every day around lunch time, Adria goes to her school nurse who empties her bladder with a catheter. And there are days that Adria comes home from school with stinky poo in her diaper. In spite of our best efforts to regulate this part of her life, it's an on-going struggle.

Summer 2013, I wrote about her STINKY SITUATION and how we were getting into a routine to help that. We've made progress since then, but it is so inconsistent and we are nowhere near ready to get rid of her diapers.

In June this year, Adria's urologist introduced us to a new bowel program called PERISTEEN. This was during a very FULL DAY OF DOCTOR'S VISITS at A.I. duPont Hospital for Children, so they sent us home with information to look into and decide if we'd like to try it.

What is Peristeen?

We had never heard of Peristeen before. It's a type of enema system or "bowel irrigation" that is used to "manage fecal incontinence and chronic constipation." Peristeen has actually been around in Europe for many years but has only been approved for use in the U.S. over the last two years.  Earlier this year our local children's hospital became among the few hospitals nationwide that is trained and approved to offer this system. Yeah!

In just the first few months of offering the Peristeen to other children who have bowel issues similar to Adria, there were 10 families from just that hospital who were already experiencing huge benefits from this program.

Peristeen is produced by Coloplast, the same company that supplies us with Adria's catheters for emptying her bladder. If you'd like to learn more about the program, Coloplast has an informative video. I especially like the narrator's formal English accent, as she describes such a sensitive process :)

How do we get Peristeen?

After learning about the program, we were interested in trying it for Adria. Yes, it's a bit complicated, but if it means that she can go through the day without having a poopy diaper, then it's worth it.

Unfortunately, it's not as easy as saying "Let's try it!" Because Peristeen is so new, some health insurance companies do not know how to code it and will quickly deny coverage. This happened to us. Without insurance, this program costs about $1,000 out of pocket a month!

And thus began a nearly six month battle. Fortunately, we have a great team of doctors at DuPont Hospital, and Susan Myers specifically went to bat for us. There was a lot of back and forth among us, insurance, the doctors and the supplier for Peristeen.

Finally...two weeks ago I received the call from Dr. Myers that she got our insurance to approve covering the Peristeen system!!!

YEAH! We felt like this was a huge answer to our prayers.

How do we use Peristeen?

With insurance approval, our Peristeen system soon arrived in the mail. However, before we could begin the routine, we would need official training from a medical professional.

That came this past Tuesday during our semi-annual visit to the children's hospital for the spinal dysfunction clinic. After a full morning of Adria's doctor appointments, we spent nearly two hours reviewing the procedure with Susan Myers and trying it out on Adria. (Tuesday was also Johanna's 3rd birthday...so that's not exactly how I pictured spending the day, but it was worth it to help Adria.)

Adria chilling in her wheelchair after lunch, waiting for our meeting about Peristeen

The new wing of A.I. duPont Hospital has an impressive 6-story atrium, a great new cafeteria,
and this colorful Discovery wall that changes scenes.

Without getting too disgusting with details, I'll just say... the Peristeen definitely emptied her bowels MUCH BETTER than anything we have tried before!

As we get started, we will need to use the Peristeen every night on Adria. Eventually, we may be able to reduce it to every other night.

So every night this week, my husband and I have worked together to set up the Peristeen system and do the routine with Adria. She sits on the potty for 30 minutes, being entertained by the iPhone or iPad, while her bowels empty. She has complained of some cramping and strange sensations, but overall it's going really well.

I document the nightly details in the "Bowel Emptying Diary" provided with the Peristeen kit. That's fun...

At the hospital Adria was very hesitant to try this new thing, but when Daddy said it could mean that she would be able to wear panties instead of diapers, she got excited and cooperated so well. What a trooper!

And that's what Adria wants for Christmas...her own pack of panties...that's what she told me today :)

This is a video I took at the hospital to help remember the exact instructions we received during our visit...



So...next time you have to GO #1 or #2 take a moment to give thanks for this ability. We all take it for granted, but it's not so easy a task for some people, especially many of those living with spina bifida.

If you or your child struggles with bowel management, this may be a program to strongly consider. We'll keep you posted on how it's working for Adria, but it's looking promising so far!

For now, it's just past 7:30 p.m. so I need to get off the computer and do her potty time!

Happy 3rd Birthday Jo-Jo!

Her smile. It's adorable. Mischevious. Contagious. And one of my favorite things about our precious little girl! When paired with her dancing blue eyes and wavy brown hair, this smile truly makes her a rare beauty. But then, I am rather biased :)


On Tuesday Johanna turned 3 years old. She has grown so much this year and is regularly thought to be her older sister's twin...though they are 3 years and 3 months apart in age!

Unfortunately, we were not able to spend much of the day with her, but instead she was thoroughly entertained at Granny Seely's house. Mommy and Daddy took big sister Adria to the chilren's hospital and hour and a half away for appointments that took most the day.

Still, we did get to spend time together in the evening and sing Happy Birthday...and of course open a present. It was Ariel and Eric dolls from The Little Mermaid, which she had picked out at the store a week ago and has been asking for since. For now, Ariel is by far her favorite Disney princess.

I did feel somewhat guilty that I could not be with her more today. Especially since I had a little Ariel party planned for her last weekend but put it off twice - once for my Grandma's funeral and a second time because Johanna was very sick.

I know she still feels loved and had a special day with Granny. Plus, she really enjoyed the special treat of fresh raspberries that I brought home for her tonight.

• Last year, I shared this post about our ADVENTUROUS LITTLE GIRL on her birthday. 
• We had success at POTTY TRAINING this year.
• Jo-Jo almost knocked out her sister's tooth with JUST A LITTLE DRAMA
• We briefly thought Johanna would NEED SURGERY
• There were many precious moments that I WANT TO REMEMBER

For now, I'd like to take some time to share some of favorite photo memories of Johanna over this past year. One of the prominent memories I will hold this year is our little girl wearing Princess Anna's dress from Frozen...basically every day until it's now pretty tattered. Of course older sister is Elsa.