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

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.

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!

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!

The Pageant Experience...in the news

Adria is in the news again! 

She had a wonderful experience at the Little Miss Apple Scrapple pageant last Friday. Though she did not win, Adria's confidence and performance on the stage made her parents and many fans proud.

The Seaford Star was kind enough to publish this little article I typed up late one night after Adria's pageant. I have to use my journalism degree and experience as a free-lance writer for this local paper once in a while ;)  

The article in the Seaford Star

Apple Scrapple Contestant leads a Beautiful Life with Spina Bifida

It took her a little longer to climb up the steps than the other eight girls, but when Adria Seely walked across that stage in front of a couple hundred spectators, she was full of confidence and smiles.

Friday night was the 10^th annual Little Miss Apple Scrapple Pageant at Bridgeville’s annual fall festival. Local girls ranging in age from 5 to 8 years old participated in the event, showcasing talent routines that included singing, dancing, hula hoop swinging and stand-up comedy.

Adria poses for me just before going on stage...after I saw that,
I knew she would be ok up there in front of the hundreds of spectators.

They announced each contestant and her hobbies and interests.

One of the shortest contestants was seven year old Adria Seely, who attends Woodbridge Early Childhood Education Center. This was the first time Adria has participated in an event like this, and it was quite an accomplishment for her to be able to get up on that stage and perform.

Adria was born with Spina bifida, a severe type called myelomeningocele, which involves the incomplete closure of the spinal cord early in pregnancy and leads to life-long challenges. Many children and individuals living with spina bifida are never able to walk, requiring a wheel chair for mobility. Adria was not able to walk until she was age two and then she required a walker to get around until age three. Now, she walks independently with only the support of Ankle Foot Orthotics (leg braces). She owns a wheelchair but only uses it rarely for longer distances.

Adria was both nervous and excited about the idea of being in the pageant but ultimately decided it was something she wanted to do. She began practicing a dance routine at home and on the night of the pageant, she danced to the song “It’s a Beautiful Life” by Ace of Base. Her performance ended with a spin and a bow, resulting in loud cheers.

Adria dances to "It's a Beautiful Life" - she remembered all her practiced moves and even finished with a twirl and a bow.

Most of the audience did not know there was anything unique about Adria’s beautiful life. But her presence on that stage was a testament to a life of perseverance and overcoming daily challenges.
October is Spina Bifida Awareness month. It is the most common permanently disabling birth defect and impacts individuals in many different ways beyond mobility. Most face issues with incontinence, learning delays, fluid on the brain, and a shorter stature due to under-developed leg muscles. They may require dozens of surgeries throughout their lifetime.

Adria has been fortunate in many ways, but she realizes that she does have differences from her school friends. And even though she did not win a crown or any roses at the pageant Friday night, her positive attitude and confidence on that stage made an impression and should serve as encouragement to differently abled families. Life may be tough but it still can be beautiful.

My parents were among the many family and friends who came out to support Adria

The winners announced! A sweet bubbly blond girl who boldly sang alone won the pageant.
Two of Adria's friends won the Talent Competition and Interview segment

Adria poses in her Party Dress after the pageant.
Mommy did not have time to curl and style her hair, since I got off work at 4:30 that day and she had to be there by 5:15! 

Proud mommy with her amazing girl.

Big October events and Spina Bifida Awareness

Drama, drama, drama. Sometimes that's just life with two little girls. The slightest disturbance to their ideal world and there's a fit thrown or tears shed.

It must have been the adjustment of going back to school, but there was a LOT OF DRAMA in our house in September. And most of it seemed to come from very ordinary things.

Now that October is here, the girls have mostly adjusted to their school routine and made new friends. Daddy is enjoying his days with Judah. And Mommy is staying busy at work, while trying to find balance in home responsibilities and the fun stuff we do.

Last night, I took Adria out for our first Mommy-Daughter date in a long time. She has been asking me to go out just the two of us since before her birthday a month ago.

Mommy-daughter date last night

Adria and I had a great dinner together at Grotto Pizza, then headed to her pediatrician for her 7 year check-up. Unfortunately, we were the last appointment of the day and had to wait a looooong time. Our date ended with Adria spazzing out when they tried to give her a "Flu mist" vaccine in her nose. I thought it would be better than a shot! Drama indeed. She was sad that was all we had time for, but she's got more to look forward to in October

We have some BIG STUFF planned for the next two weeks!

Apple-Scrapple Pageant

Tomorrow night, Adria will be doing something very new for all of us. She will be participating in a little pageant for girls age 5-8 at our town's fall festival called Apple-Scrapple. The weekend event draws thousands but the pageant is only open to girls in her school district and is geared toward having fun while the girls learn confidence on stage.

Judges will interview the girls and then the girls will do a talent. Adria will be dancing to "It's a Beautiful Life" :)  She's been practicing, so we'll see how it goes!

When the sign up sheet for the pageant came home from school, I asked her if she was interested. At first, she was very nervous about the idea of being alone on stage in front of people (aren't we all?!). I tried not to push the issue too hard and let her know it was her decision. She said yes and now is both nervous and excited!

The Pageant is at 6:30 p.m. Friday night behind the Bridgeville Fire Hall. We'd love to see you there!

Adria practices her pose.

Children's Run and Half-Marathon

Next Friday will be a big day too! Both the girls will be participating in a Children's run in Pennsylvania. It's part of the Runner's World weekend of events that concludes with a half-marathon for adults on Sunday. I'm supposed to run that event but am very nervous because I have not been able to train for it well.

The girls will be running a half mile. Adria tries to practice for it when we can, and I'm hoping she'll be able to complete it. Last year, she showed us that she could complete a half mile race, even if she finished in last place. This year, she talks about wanting to WIN the race...

I don't want to tell her she can't win, but the reality is that she is not able to run as fast as most children because of her weak lower legs that require braces for support. I just try to encourage her to do her best when she is out there. I tell her there is no way mommy is going to WIN her race, but that we run at our own pace and finish the race when we can. That's our goal...to finish the Race!

October is Spina Bifida Awareness month

This makes for a very busy month for us, but I think it's very fitting that Adria participates in both of these events at this time. October is actually SPINA BIFIDA AWARENESS month!

Adria can show the community that in spite of the limitations and challenges that she faces with spina bifida, she can enjoy life and push the limits!

A couple weeks ago she told me, "Mom, I don't feel like a spina bifida kid. I'm like the other kids at school."  I was glad to hear her say that because I don't want her to feel different.

Then just two nights ago, after I catheterized her, she said, "Mom, I wish I was like the other kids at school who can just go potty without a catheter. And I'm the only one who has to wear braces on my legs. Sometimes I feel like I don't fit in."  Ugh, it's hard to hear her talk like that. I assured her that she has many wonderful friends and teachers at school, and I'm so proud of how well she does.

It's just like that. Some days are much better than others. You know, Drama comes and goes.

How I love this girl and pray that I'm doing the right thing by giving her the opportunity for these big events. Go Adria!

First Week of First Grade

Adria made it through her first week of First Grade. I say "made it" because it's been a bit of an emotional week for her. At times she's been dancing with excitement and other times teary-eyed and fussy. There are many changes with First Grade, and our routine oriented little girl can struggle to adjust.

A couple weeks ago she kept saying how she missed Kindergarten and wasn't ready for First Grade. She was mostly concerned that she would miss all her friends and not know anyone. I reassured her that she would see many familiar faces, and in fact she's sitting beside one of her best buddies since pre-school in her class.

Adria at her desk during Wednesday's 1st and 2nd grade open house

It was easier for me this year because I knew more what to expect and that we had a plan for Adria's unique spina bifida related needs that would work. Last year, we really had to plan ahead with her teachers and the nurse to Prepare for Kindergarten.

First Day Drama

Despite her earlier fears, when it came time for her first day of school on Monday, August 31 this girl was ready! In fact, she did not even want Mommy to walk into school with her. She said, "I'm in first grade, so I know everything!"

First day of first grade

Well excuse me for trying to be a helpful mother on your first day :)  We got this little attitude in check, and I followed her to the cafeteria where we met up with her class and all the other first graders before walking back to her classroom.

Cafeteria full of first graders

She smiled happily and waved goodbye, ready for her new adventure. I knew she would be fine.

Adria waves goodbye with her classmates on Monday

That is, until we got a surprise call in the afternoon from the school nurse saying that Adria had 3 stinky accidents on her first day of school! She had to change her panties twice and then her entire outfit. I was so surprised and upset to hear this! Adria has not had bad accidents like that since we started her on the Peristeen program in December. I felt so bad she had to deal with that on her First Day of First Grade :(

In talking with the nurse, we determined looser bowels can be a side effect from the antibiotic (amoxicillin) that she is currently taking. Last week, Adria was diagnosed with strep throat (ugh!) before school started and has to take the medicine for 10 days.

That said, Adria did not seem bothered by the accidents and later just said she couldn't believe she had to change 3 times that day. Her biggest complaint is that I sent her to school in pull-ups the rest of the week to avoid this happening again while she's on the antibiotic. Wearing panties is a big deal for her...check out Panties are Priceless.

First Grade is Different

Adria does like school and has mostly enjoyed going back. But the "demands" of First Grade have been taxing on her this week, though I think she only shows it at home.

It's just different from her glorious Kindergarten days :)

• New Classroom - One of the biggest differences is that Adria's new classroom is pretty much in the furthest corner of the school building. On one hand this provides her with great exercise to help build up her walking stamina, on the other hand the longer distances to the cafeteria, gym, etc. can be very tiring for her.
• Later Lunchtime - The school food program is great and provides free breakfast and lunch for students. However, her lunch time is 40 minutes later than it was last year and our food-loving girl complains that it's such a "long time to wait for lunch." But really, lunch is at 12:10 p.m. and her teachers try to give them a mid-morning snack. She'll be fine.
• New Teachers - Once again this year, Adria is in a classroom with two teachers. We requested that since we loved how well it worked last year. Her teachers are great and have been teaching at the school many years, and they already seem very impressed by Adria's abilities and confidence. Our girlie really bonded with her teachers last year, and I'm sure she will again this year.
• More Reading and Writing - This will be the case every year, and she'll have to get used to it. We tried to keep her reading and writing over the summer, but I could have invested more time into encouraging her to write. She complains that her hand hurts from all the "coloring and writing." Haha! It's good for her.
• New Friends - There are some familiar faces in her class and many new faces. I have no doubt that she'll be happily hugging all her classmates before too long. She's still a very social gal and when I walk through the school halls with her, many people say, "Hi Adria!"
• New Potty Routine - This year, she is still going to the nurse's office before lunch every day to empty her bladder with a catheter. However, last year she laid on a bed while the nurse took care of everything. Now, she sits on the potty and is more involved in helping with the process, which is great! We've been doing this all summer, but still she wanted to go back to how it was done last year at school. 

One more difference, is that her little sister Johanna will get dropped off at school with her 4 days a week for morning pre-school. Both the girls are very excited about this! 

Mommy and her girls in uniform.
Johanna doesn't have to wear one but she wanted to be like sissy.

Johanna's first day was on Wednesday and apparently just her first two days wore her out good. She was asleep by the time I got home from work last night around 7:20 (it was a late night for me...), only waking up briefly to go potty then sleep all night. 

Don't be fooled by the shy face, she was super excited!

Johanna posing by her cubby at the pre-school open house Tuesday night.

It was a very busy week for us with first days of school and school open houses on different nights for the girls. We're all pretty exhausted and thankful that it was a short school week. Now, the girls have four days off, but I'll be working all weekend. At least I'll have off Monday for Labor Day!

There will be lots of changes and adjustments for us all this school year, and many of them good. Daddy is really enjoying more one-on-one time with his baby boy while the girls are at school. We are also appreciating the great support from both of our Moms, who are scheduled to pick up and help care for the girls several days a week. Grandparents close by is great!

Daddy and his little man

Here's to wishing you and your family a great 2015-2016 school year!

Another Hospital Visit

Adria's leg strength has greatly improved over the past six months! That's the official report from the doctors during our visit to A.I. duPont Hospital for Children on Tuesday.

Was it playing soccer perhaps? Or walking through the long school hallways? Or the weekly physical therapy sessions at school?

It's all working together to significantly improve Adria's strength and stamina, and her orthopedic doctor and assistants were quite impressed with the change  since our last visit in December. Adria walked and ran down the hospital hallway with and without her braces to show them her stuff.

We also discussed the pronation of Adria's feet and how her right foot especially seems to be turning outward more. Her doctor noted that the tendons on the outside of her feet are tight, like many children with spina bifida, and may need to be corrected with more than just leg braces (orthotics) in the future.

That means surgery. Thankfully it's not needed now, just likely at some point in the coming years. The exact type is yet to be determined, but the orthopedic doctor prefers to wait on surgery until the children are older. We've known about this possibility for a while, but have not discussed it much to this point.

I took this picture of Adria today without her braces on. As you can see, she was not too happy about posing for me.... She was actually complaining about her feet being in pain :(

It's incredible that she can even walk barefoot, but it does often cause her pain.

Adria's feet pronate outward without her braces on.

Adria has been extremely fortunate to have only had two surgeries at this point in her life. Many children born with spina bifida have more than a dozen surgeries in their youth. Surgeries to address the build up of fluid on the brain, problems with legs and hips, bowel and bladder issues, and much more. Even just yesterday, a boy we met in Indianapolis who is just a few months younger than Adria, went in for the Malone procedure and Mitrofanoff appendicovesicostomy, which are complex surgical procedures for children with severe bladder and bowel challenges.

While I do not like the prospect of Adria needing surgery in the future, I realize how fortunate she has been. Still, I pray that she will continue to walk and "run" the way she does and not require invasive surgeries.

We'll be traveling north again in July to meet with Adria's urologist at the same hospital and discuss how her life has changed since our last visit in December, when we learned the PERISTEEN procedure.

The physical therapist and other specialists at A.I. duPont Hospital check Adria's strength and leg movement.

All three of our children came along for the morning of doctor appointments on Tuesday.

Chubby Cheek Baby Boy :)

In spite of meeting with multiple doctors that morning, I think the most dramatic part of the day was taking care of the needs of three children in a public restroom!

Johanna who is potty-trained, Adria who requires catheterization, and Judah who had a nasty diaper blow-out. That was a rather time consuming ordeal, but at least Daddy was there to watch the other two while I took care of each child's needs one at a time. Shew!

We have been to the Children's Hospital many, many times since Adria's birth and will continue to do so at least twice a year for the foreseeable future. It's all just part of her life with a child who has special needs.

If you want to learn more about her past doctor's visits, here are a few posts to read:

• The Incredible Shunt Alternative
• Answer to Stinky Situation - Peristeen
• Learning to Catheterize a Toddler Girl
• Brothers with Spina Bifida
• Getting Wheels and Tests

The End is Here...of Kindergarten

Today was our little girl's last day of Kindergarten. Adria sobbed on her way home from school yesterday. She is deeply perplexed that the school year is over.

She's had a fantastic year of learning, making new friends, and improving her mobility.

From what I see and hear during my visits to her school, she is loved by her classmates and teachers and is known for her out-going, witty personality!

This morning we watched Adria perform, along with about 150+ other kindergarten students in her school, for their end-of-year program. In spite of the roasting hot auditorium, it was cute to watch her get so enthusiastic with her singing and dancing.

We have been pleased with our decision to send her to the local public school, even though her Daddy and I never attended public school. She was in a classroom with two fantastic teachers, who were great at encouraging their students while pushing them to do their best. Adria thrived in this environment and often assisted other students with their work (so I was told).

Adria poses with her fantastic teachers just before leaving her kindergarten class for the last time!

When I told Adria's teachers that she cried because this school year is over, they said, "She has such a love for learning. We are sad for her to leave us, but we know she will do great in first grade!! She has really touched our hearts this year!"

It is exciting to see all the educational skills that Adria has mastered this year, including:

• Counting to 100 and beyond easily
• Reading and writing over 60 memorized sight words
• Adding and subtracting numbers up to 10
• Sounding out words and reading small children's books
• Understanding more about different areas of science
• Typing on a computer and using the internet

In addition to increasing her mental abilities, Adria also improved her mobility through weekly physical therapy appointments and was able to achieve the following:

• Walking up steps - at first holding the rail with one hand, now she can walk up and down 3 steps without holding onto the rail! She continues to work on alternating her feet and doing more steps without requiring a rail.
• Balancing as she walks along a 4-5 inch wide beam.
• Jumping on one foot! She came home a couple weeks ago and showed us this impressive skill with her left foot; she's still trying to do it on her right foot.
• Playing on the majority of play ground equipment independently.

Her physical therapist said, "I lover her independence and willingness to try everything!"

At some point during the year, she became the permanent line leader for her class whenever they walked through the halls. Her teachers gave her this opportunity so that she could set the pace, since she tends to walk more slowly, but they noticed when she had the responsibility to lead, she was more confident and kept her pace faster. I thought this was so great of them to do!

One of the best parts for me has been so many fun class trips and activities at the end of the year, and I have gotten to experience them ALL with her since I am still on maternity leave! It's been sooo great! Here are some of Adria's end-of-year activities that Daddy, Judah and I were able to experience with her.

Kindergarten All-Stars Trip to Funland in Rehoboth Beach

Riding the Fire Engine - Funland was open ONLY for her school's kindergarten class that morning!

Adria totally impressed me by going through a huge obstacle course that was really tough!

Lunch on the boardwalk with her class.

Our family on the beach afterwards

School trip exploring Cape Henlopen State Park in Lewes

Scavenger hunt on the beach

Mommy wearing baby Judah while enjoying the class trip

Adria and friends playing in the sand and water

Greeting the horseshoe crab in the Nature center with her teacher

Walk to the Library in Greenwood

Daddy joined her on this hot day as her class walked to the library.
Adria used her wheelchair for the first time at school, since it was a longer distance.

Field Day at her School

Judah joined me on Monday to cheer on Adria at field day.

They had many relay races and running games...Adria participated in every one.
She later said there were too many sweaty games :)

I loved her style of doing the sack race. Instead of stepping inside, she held the sack in front of her or behind her like a cape and then did her best to "hop" with her braces.

This bouncy ball relay was one of the last morning events. She had a hard time with it and got frustrated, but she was determined to do it. Her teacher even bounced along with her to help her finish.

In all of these activities and many times throughout the year, our little Adria would sometimes trip and fall, but it never seemed to phase her. Falling is just part of her life. She barely acknowledges it before she's picking herself up again and experiencing all that she can!

We are so proud of our little Kindergarten All-Star!

To read more about her school journey, check out these posts:

• Welcome Class of 2027!
• Her First Graduation
• Her First Day of School
• Free Breakfast and Lunch
• When the School Nurse Called