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.

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!

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!

Mermaid Magic

"Do you want to see my panties?!" Adria asked excitedly.

Silly girl. But in this instance it was a perfectly suited question.

We were up at A.I.duPont Children's Hospital again last week for Adria to have a couple studies done to assess the condition of her bladder and kidneys. These are done periodically because she has what is called a neurogenic bladder and bowel, meaning she lacks control of these due to nerve damage common in people with spina bifida. (What is neurogenic bladder?)

When she had similar studies done last year, she was still wearing diapers and pull-ups. But not this time!

Adria striking a pose at the mall later that day with her new Frozen shoes.

We were happy to see the familiar face of the female technician administering the study. She asked if anything had changed since last year. We were pleased to report that Adria had NO UTIs (urinary tract infections) over the pas 6 months and with the help of PERISTEEN, she was no longer having regular bowel accidents!

Now, she is able to wear panties with a pad everyday! Adria was more than happy to say goodbye to the diapers and pull-ups that she wore for the first 6 years of her life. (Except she complains that we still put a pull-up on her at night...too much urine leaks out.)

And this is wear our little cutie proudly pulled down her skirt, so the lady could see her lovely Princess Belle panties :) We all had to laugh as we joined in her excitement over this milestone.

Of course, the tech congratulated her then politely reminded her that it's fine to show her doctors but better not others at school and stuff.

Here's the story of the first panties we gave her - Panties are Priceless

VCUG Study and Mermaid Magic

Adria was getting ready for a VCUG (voiding cystourethrogram) which is a study that uses an x-ray and contracting agent put into the bladder through a catheter to evaluate her bladder size and capacity. Not so fun...

For the VCUG and urodynamics study, the lady was kind enough to bring her a special Minnie Mouse hospital gown to wear. 

She liked the Minnie hospital gown she got to wear!

Adria was happy and very cooperative until she got on the X-ray table. The urodynamics study she had last year did not involve an X-ray, so she was very apprehensive. She was afraid of what was about to happen, and in truth it's not very pleasant. The test involves putting a catheter in both the urethra and rectum. Ick! But, catheters are an every day necessity for our sweet daughter. 

Adria got nervous after lying on the X-Ray table

Adria didn't remember the big machine above her from previous tests and was frightened!

So, the lady brought her an iPad with games to distract her. Winner! Adria found a MERMAID Dress-Up Game that she LOVED. She played this game for most of the next 45 minutes, while four doctors came in the room to participate in the study.

Those blessed mermaids kept her distracted and happy the whole time, while they pumped her little bladder full of fluid and took X-rays and videos. Once in a while, I had to take the iPad away for the machine to do its thing, so she wanted me to dress up mermaids too :)

Doctors evaluate Adria's bladder and kidneys during the VCUG.

The Results

After the studies, we met with the urological Nurse Practitioner, who has helped us sooo much with the Peristeen bowel management program that Adria has been on for the past six months. She is so kind and helpful, which is critical when teaching parents and kids techniques for emptying the child's bladder and bowel!!!

The great news is that Adria's bladder shape looks good and her kidneys are performing well. Very few changes since her last study a year ago and her bladder holds an acceptable amount of urine for her age.

However, the Nurse Practitioner did notice REFLUX on the right side. This means that some urine is traveling up into her kidney. She said that this is the first time they've seen it like this in Adria and will keep tracking it but not make any major changes now.

The Practice

Next item on the agenda was to discuss the topic of Adria taking more steps to learn to self-cath. I would love for her to be able to catheterize herself, yet none of us are excited about the process of her learning to do this.

The N.P. talked with Adria about steps she can take and things she can do to begin to help.

Then she pulled out a rubber model of female parts...yes, weird...but helpful.

Adria got to practice inserting a catheter into the "pee-pee" of this rubber mold. It worked pretty well, but she is still very hesitant to try this on herself. We'll get there. Baby steps.

We understand this well. Be persistent and consistent. She will get it in due time.

Last year she was wearing diapers and having regular poopy accidents, and this year she wears panties with very rare accidents. She is certainly making progress and we hope for continued improvement this year!

Adria did a good job at the hospital, so we went out for a special lunch to Bahama Breeze.

Treasured Times

Judah is 3 weeks old today! If I'm totally honest, I cannot believe how "easy" these first few weeks with Baby Judah have been. He's already been to the Zoo, the Beach, and a Strawberry Festival (since Mama has recovered well.)

Now before you get jealous or annoyed at our good fortune, hear me out.

I look at him now, sleeping peacefully in the small cradle by our bed with an adorable head full of dark hair, precious closed eyes, perfect little lips, and a pudgy nose that clearly comes from my side of the family. I look at him and have a heart full of gratitude.

Daddy and Judah relax with some skin to skin time.

We have a son. A healthy, calm-tempered, beautiful baby boy.

He sleeps well and often. He nurses like a champ and has since the day he was born. He rarely spits up or has massive diaper blow-outs. His skin is dark, clean and clear. His eyes are wide and alert when he's awake. He's pretty patient with his adoring older sisters. What more could a mother ask for?

Precious baby Judah

As the mother of three children, I know that it's not always this good. And I know that this precious newborn phase lasts ever so briefly. Some parents are relieved when it passes because it can be so difficult. But this time around, I want so desperately to treasure this sacred time. Especially since this will likely be the last time I ever experience this phase.

My expectation was that these first few weeks would be so difficult. That's how I remember them with my daughters. They were precious times too but they came with so much more drama. And when I hold Judah, I cannot help but compare his first couple of weeks with his older sisters...

Johanna was born in December in Indianapolis, In. We were 600 miles from our families, though they did come out to visit and help as they could. The support network was so much smaller out there than what we've experienced here, and I felt sad that so few people had the chance to meet Johanna the first month of her life.

While Johanna was an adorable baby, she struggled more with nursing at first and spit up A LOT. I was constantly changing her...and myself. She was very restless at night and kept us awake many nights.

But the most difficult memories about her first weeks and months of life was the fact that it was the worst "season" of Adrian's seizures. During the two months I was home on maternity leave, my husband had three grand mal seizures that left him impaired physically and mentally. Because of that, he has almost no memory of holding her as a baby :( And in truth, he did not hold her much.

And I struggled with the Baby Blues. Maybe it was because of the seizures, or the challenges with Jo-Jo, or the dreary winter weather, or the on-slaught of medical bill issues that arose in the midst of it all. Whatever the case, I battled post-partum depression for the majority of the first year of Johanna's life.

Welcoming Baby Johanna in December 2011

Adria holding baby sister Johanna for the first time.

Adria was born in September in northern Delaware. The first two weeks of her life, she and I were both recovering from surgery, my C-section and her spina bifida back closure. We spent every day sitting in the NICU at A.I. duPont Hospital watching her and as she improved, we gently held her and tried to avoid getting tangled in the wires connected to our tiny girl.

We spent our nights sleeping across the street at the Ronald McDonald House. I don't think we drove the 1.5 hours home at all in the first 12 days of her life. We didn't want to leave our baby that long.

Daddy with baby Adria soon after her birth.

We were inundated with information about her spina bifida: the need to monitor the fluid on her brain, how to catheterize her if needed, watching for leg movement, and when she would be able to lie on her back once her wound healed.

It was overwhelming at times, yet still we felt thankful as we heard stories of what other parents were experiencing with their babies in the NICU. Some had been there for more than four months already.

Treasured Times

Now, we have Judah who has been such a healthy boy. Our love for him is certainly no more than his sisters, but we sure do appreciate how good he's been to us! Plus, we have been so blessed with meals and gifts from our friends, family and neighbors. What a treat! Tonight I cooked dinner for the first time since he's been born.

As I hold another little baby in my arms, I try desperately to impress on my memory these treasured times. And I enjoy the ease of holding Judah without worrying about wires or back wounds or getting regularly covered in spit-up.

But most of all, I love watching his Daddy and sisters hold him and love on him. Seeing them so happy with this little guy is beautiful. 

Sisters loving on the Baby Brother they had hoped for!

I hope Judah keeps his relaxed and chill demeanor throughout his life. Of course, I know quite a few toddler and pre-school boys and realize there is a lot of adventure to come!

Spina Bifida is NOT a Disease

Spina Bifida is NOT a Disease.

It is not contagious. It is not something that's developed later in life.

It's not something you can "recover" from. It cannot be cured. It is not (generally) life threatening. It does not have the same symptoms for all people.

Spina Bifida is something you are born with...or not. It's determined within the first several weeks of pregnancy and is a result of the spinal column not forming properly.

It's fair to call it a "condition" and it is often referred to as an "abnormality" or "birth defect", but to the person living with spina bifida or to the parent of a child with spina bifida it is Not a Defect or a DISEASE that they "suffer" from.

At least that's the way this mother sees it.

I just felt the need to clarify the issue a bit because I have read several well-meaning articles about spina bifida that refer to it as a Disease. I don't think anyone who knows my 6 year old daughter Adria, would refer to her as having a disease - not with her giant smile, witty remarks, social personality and confident strut. (Of course there are children who have diseases that still have these same great qualities!) Adria is like most children in many ways, except for a few unique challenges that are a result of being born with spina bifida.

But I realize that it is hard to understand. The fact that more than 160,000 Americans live with spina bifida makes it more common than most permanent birth "defects" (ugh, I don't like that term). Yet, spina bifida is still widely unknown and misunderstood.

A friend recently shared an interesting article with me about a mainstream, "celebrity couple" who has a beautiful daughter with spina bifida. The article highlighted a conversation with the mother Nicole Ari Parker about some of her daughter's challenges along with a special letter from the girl's father Boris Kodjo on her 10th Birthday. You can read the FULL ARTICLE HERE or watch this brief interview about their daughter Sophie.

I really enjoyed reading the article and relating to this couple and their daughter, especially the love and pride they obviously have for her. Even so, a line penned by the author stood out to me:
"Nicole opened up about their daughter’s disease last summer,"

I'm sure it was perfectly innocent and well-intended, but I couldn't help but wonder if tagging spina bifida as a "disease" irritated Sophie's parents like it did me.

To me, the term Disease implies a degenerative illness or sickness that significantly reduces one's quality of life and worsens over time. While some might believe that's the case with Spina bifida, it does not have to be. Many individuals with spina bifida lead long, fulfilling lives... even while dealing with the daily necessities of catheterization, leg braces and/or wheelchair mobility, medications and much more. There's no question that life with spina bifida is more difficult, but it should not be treated as a Disease.

As I read the article, I did not want to dwell too much on that one line. I loved the words that Sophie's father Boris wrote to her last week and felt that I could say the same for Adria:

"You’ve shown me what true strength and courage is and you taught me that the love of faith and the faith in love is one and the same.  I’m in awe of your ability to defy the odds and I marvel at the confidence with which you produce miracle after miracle. You smile your way through life and your light touches everyone around you."

We are blessed to be parents of incredible children, and we each have a daughter who happens to live with a condition called spina bifida but is not defined by it.

Adria strikes a pose in a new purple dress that she loves.

For more information on Spina Bifida, take a few minutes to read these posts:

WHAT EXACTLY IS SPINA BIFIDA

PREPARING FOR KINDERGARTEN

OCTOBER IS SPINA BIFIDA AWARENESS MONTH

Panties are Priceless

She opened many great presents for Christmas...two purple race cars, an Elsa Barbie, new uniform clothes for school, craft and paint sets, an American Girl doll, and a three-wheeled scooter. But the gift that received the best reaction out of Adria was the package of Princess Panties!

Our little six year old literally went "nuts" over receiving her first package of underwear. She squealed in delight then hugged and kissed them. I have proof, watch this...



Why was she so excited about this gift? 

Because she wants to wear panties to school!

Princess Panties...one of her favorite Christmas gifts!

Adria has needed to wear diapers or pull-ups her entire life. This has been necessary because, like many with spina bifida or spinal cord injuries, she has what is called a Neurogenic Bladder and Bowel. For our daughter, this is a result of the nerves never fully developing that control her ability to urinate and have a bowel movement.

At two years old, we had to start a catheterization routine with her to empty her bladder and prevent UTIs (urinary tract infections). At four years old, we started a bowel program that involved medicine and mini enema stimulants to empty her bowel. Still, it has never worked perfectly to keep her diapers clean and dry, often causing her to have embarrassing odors from loose stool.

BUT...we are making progress! In early December, we started a new bowel program called Peristeen, which I shared about in this post: An Answer to her Stinky Situation?  

We have used it every night for a month now and are very pleased with the results. Yeah!!! Since starting this, Adria has had very few ACCIDENTS in her diaper!

The Peristeen system is pretty involved, as it is basically an enema with a rectal catheter that inserts warm water into her intestinal tract to clear it out. This is not very pleasant or comfortable for her, and she was afraid at first. But when we told her that doing this might enable her to wear Panties to school...she was willing to try and has been so great with it!

This is the Peristeen enema system that she uses every night to empty her bowel.

And that's why Adria was so excited to get her first package of panties. She has longed to wear them to school, like the other children in her class... It's something she talked about often. At times even saying things like, "I wish I didn't have spina bifida, so I could go to the bathroom and wear panties like everybody else." :(

Her First Day wearing Panties to School

Yesterday was the big day! Adria wore a pair of panties to school for the first time!

She was very excited about this day. She had been counting down since Monday when she returned to school after Christmas break. Mommy told her we would try the panties on Friday, after I had the chance to talk with her school nurse and teachers about the new plan.

I spoke with her school nurse to make sure she was comfortable with the change. The nurse is very supportive and has been a huge blessing, since she must catheterize Adria every day after lunch. I also cautioned Adria's teachers to be on the look-out for any possible accidents or leakage. Her kindergarten teachers are so great, and I completely trust that she's in good hands.

Friday went well with no leakage or accidents! This is a BIG STEP for Adria and for us.

We do still need to put a pad in her underwear, because when her bladder gets too full it can cause leaking...sometimes more than a pad can handle. But the holiday break from school gave her Daddy and I the chance to try out the panties on her and determine how it would work best.

We all hope and pray that the new bowel program continues to work well and that she can stay mostly dry at school. SHE LOVES HER PRINCESS PANTIES!

FAQ

People sometimes ask questions about Adria's health and this issue. That is totally fine with me, as I believe questions are an indication that you care and seek to understand. Here are some answers to Frequently Asked Questions:

1. Can Adria feel when she needs to go potty? No, she cannot feel the urge to urinate like most of us. However, she does feel pain when her bladder gets too full and will complain that her tummy is Ouchy. When this happens, she must be catheterized immediately. 
2. Does she know when she has a stinky in her diaper? Rarely. She has very limited sensation in that part of her body and does not know when stool is coming out. That said, sometimes she will feel pressure when it needs to be emptied.
3. Will she ever be able to GO on her own? Since the nerves in her spinal cord that control bowel and bladder function never actually developed properly, it is highly unlikely that she will ever have the ability to empty without medical equipment. However, in the near future we will be working to teach her how to catheterize herself... That feels somewhat daunting to me.
4. How often does she need to be "taken care of"/catheterized? We typically empty her bladder with a catheter every four hours, except during the night. She sits on the potty to empty her bowel with the Peristeen for 30 minutes every night.
5. Does it bother her to be catheterized? In general, no it does not hurt her. When we first started four years ago, it was very difficult to adjust, but now cathing is just a part of every day life that we are all used to.
6. What exactly is a neurogenic bladder? Here is the description from the Urology Care Foundation, plus you can follow this link for more information. It affects many more people than just those with spina bifida........ Neurogenic bladder is the name given to a number of urinary conditions. It is the result of problems with nerves in the body that may control how the bladder stores or empties urine. These conditions include overactive bladder (OAB), incontinence, and obstructive bladder, in which the flow of urine is blocked. Many women and men have these bladder problems, including people with illness and injury that affect the brain and/or the spinal cord. This includes people with Multiple Sclerosis (MS) and Parkinson's disease, and people who have had stroke or spinal cord injury. People who are born with problems of the spinal cord, such as spina bifida, may also have this type of bladder problem.