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.

Thank you, Teachers

I just need to take a few minutes to say Thank You.

Many times throughout this year and last, I have been incredibly thankful for the kind, supportive teachers my daughters have at school. Teacher Appreciation Week gives me some extra motivation to share just how much they mean to me. (But of course, I got busy at work this week and am just a tad late sharing this.)

These teachers are creating an environment that's enabling our children to grow and excel. Both of our daughters attend the local public school, and we have been very pleased with the teachers and the administration. It's a new experience to us, as Adrian was always home-schooled and I only attended private, Christian schools along with being home-schooled for five years. We both received a good education, yet are thankful for great teachers who make public school a good option for our family.

ADRIA

As Adria nears the end of First Grade, I am so thrilled with her progress in learning. She is reading age appropriate books very well, requiring only occasional assistance with words, and her math comprehension is impressive. Just yesterday, we realized she forgot to do her homework, so she did her math problems on the way to school...it's only a 10 minute drive and 4 minutes down the road, she was finished! She has earned straight A's all year, receiving the Distinguished Honor Roll each quarter. Woohoo!!

Adria's recent First Grade Portrait, age 7 - photo by Lifetouch

And so much credit goes to her amazing teachers - both from Kindergarten and this year. Adria is in a classroom with two experienced teachers, and they have been wonderful. Mrs. Hastings just loves Adria's wit and often shares with me funny things she says or sweet things she does. She knows how to encourage her strengths and minimize her weaknesses.

Like that time on a class trip when they were playing relay games. Mrs. Hastings subtly made Adria's group two people fewer than the others...not so they could win, but so Adria's team could finish their relay around the same time as the others. Adria can't run as fast as other first graders, due to her spina bifida and leg braces, so it slowed her team down, but she gave her best and her team finished with the others!

Then there was the day I totally missed the Honor Roll Assembly. and Mrs. Hastings sent me pictures of Adria prancing across the stage. Adria was disappointed I didn't make it, but glad I could see her pose as she was recognized for her accomplishment.

Mrs. Hastings even sent me a note earlier in the year saying such kind things about Adria, like "Her intuitiveness about how others might be feeling is just awesome and her desire to make them feel good about themselves is just too much."

Adria's first grade class in December - Mrs. Clough on left and Mrs. Hastings on right in rear

And  of course Mrs. Clough who is Adria's walking buddy every day at noon when they go to the school nurse, Mrs. Lord, who helps Adria with her special potty needs. Mrs. Clough always seems to be in a good mood and attentive to each child's unique personality in the class. Adria missed her so much when she was on vacation recently.

JOHANNA

Johanna started pre-school in the fall knowing most her colors and some numbers, but really struggling with shapes and letters. Now, she's got her shapes down, easily counts to 20 and beyond when prompted, and recognizes many letters. She can spell her name and write with some help. And she colors inside the lines much better :) She loves Art and Dramatic play at pre-school.

Johanna's recent preschool portrait, age 4 - photo by Lifetouch

Her teachers are so full of energy and perfect for their job. They manage a room full of three and four year olds without ever seeming to lose patience and keep them entertained and learning. Even though Johanna is in a class full of 13 boys with just one other girl, her teachers make sure there are plenty of activities she enjoys and embraces with all her friends.

Johanna often talks about her teachers and how much fun she has at preschool. Just tonight she said, "Mom, I love Mrs. Mingo. And I love Mrs. Hill too!"  Her teacher's name is really Mrs. Mozingo, but it's kind of adorable how she calls her "Miss Mingo" most of the time.

Johanna's preschool class at a recent trip to the Fire Hall - Mrs. Mozingo on left and Mrs. Hill on the right
Note the 2 little girls and ALL the boys!

In addition to their teachers, I have been impressed with the school administration at the local public school. I don't know how many hundred pre-school through second grade students attend there, but it's a A LOT. The staff call the children by name when they see them in the halls, encouraging them and challenging them to have good behaviors.

I visit when possible for Adria's lunch time, assemblies, class trips and other special events. It seems to be such a good, positive environment. I know I don't seem all the day to day drama with the children and parents, but what I do see are caring professionals genuinely trying to prepare these young ones for success in school and life.

There are so many more people I could name, like Adria's art teacher, computer teacher, librarian, gym teachers, cafeteria workers and more. THANK YOU ALL!

We parents appreciate how you care for our children every day. 

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!

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.

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.

An Answer to Her Stinky Situation? PERISTEEN

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

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

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

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

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

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

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

What is Peristeen?

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

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

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

How do we get Peristeen?

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

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

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

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

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

How do we use Peristeen?

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

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

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

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

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

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

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

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

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

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

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



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

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

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

Tiny Heartbeats...and Much More

It's been 10 days since my last post. This is a longer stretch than normal, but it's not at all for lack of things to share and topics to write about. It's truly the opposite. There is SO much going on and SO many things I could say, that I simply don't have time to sit down in front of a computer for fun.

Plus, I am officially 12 weeks pregnant (woohoo!) which means that I am tired ALL THE TIME. I feel like I'm yawning my face off at work everyday. I try my best not to do it in front of my clients.

Of all the things I could share today, the most exciting news is this: I got to hear the heartbeat of our new baby for the first time!

A few weeks ago, we saw baby and the tiny little feet buds in my 9 week ultrasound, which was wonderful. At my OB visit today, baby made me a little nervous as the doctor could not find baby's heartbeat for a few minutes, and she started asking me questions. Just as my heart rate was about to increase, we heard the quick beats of a young life. All is well!

However, I did leave that appointment with the realization that I may need to find another practice and hospital to deliver our baby. Our local hospital is small and does not have a full-time anesthesiologist or a NICU. Because of this they do not do VBAC deliveries (Vaginal Birth After C-Section) except in rare circumstances. Because of her spina bifida, I delivered Adria by C-section. And even though I delivered Johanna successfully as a VBAC, it appears that if I want to try that again, I should look into other options....

While that is the Big News of the day, I warned you, there's much more I could share.

I could share how Adria went on her first Limousine ride today. She was one of about 40 students in her elementary school (K-2) who successfully sold more than 20 items for a school fundraiser and thus won this special award! A limo ride to Grotto's Pizza for Lunch. Sweet!

I stepped out of the office for a few minutes to run over to her school and take a few pictures of the event. I was actually the only parent there taking pictures...hahaha! What can I say, I like to document things.

Adria was a little late to the party though. As the other children piled in the limo, she was still down in the nurse's office getting her needs taken care of (bladder emptied by catheter) as she does every day at lunch. She missed the group picture, but I got to pose with my little sweetie by the Limo.

I could share how Daddy joined Johanna for her Pre-school class trip to the Fire House yesterday. The little tots seemed mostly interested as they looked into a fire truck and ambulance. But for Daddy, looking in the ambulance brought flashbacks of several frightening rides he's had to take in an ambulance after a seizure.

I could share about our family going bowling together Tuesday night to celebrate my brother Cameron's 28th Birthday. We were all completely terrible at bowling, and I don't know if anyone even brought 100. But it's something we never do and was a fun change. Plus, it was Adria and Johanna's first time bowling and they both loved it! (With the gutter bumpers and ball ramp of course..) Jo-Jo showed off her muscles by caring the ball by herself.

I could share how earlier that day, I played with Adria on a fun class trip to Loblolly Acres in Viola. It was a full day of picking a pumpkin, running through straw mazes, corn sack slides, story-time, animal petting and a tractor wagon ride! Almost 200 of her fellow Kindergarteners from school and many of their parents were there, so it was a crowd but the group rotations were very well managed.

I could share how Adrian had a great appointment with his Primary Care Physician. He has been conscientious about his health and weight since his last visit many months ago, when his doctor was concerned about his blood sugar levels. Adrian has cut back how much he eats and has been exercising regularly at the gym. His doctor was impressed that he's lost about 20 pounds and his blood results were good!!!

He spent the rest of the day working on our addition and totally impressing me with his ability to put all the siding, soffit and fascia on our addition. For years he worked in construction, but it's been years since he's had the chance to use his skills. I think he really likes the change from normal "stay at home Dad" duties.

I could share about our family's weekend adventure camping at Trap Pond State Park. It did not start off so great, as we arrived Friday night ready to check into our cabin and realized that Mommy had actually made the reservation for Saturday and Sunday night...not Friday. There were no cabins available. Adria and I were especially bummed. But we returned the next morning and enjoyed a gorgeous fall weekend roasting marshmallows over the fire, walking miles through wooded trails, and taking a pontoon boat ride. Truly, all's well that ends well in this case.

Believe it or not, there's still more I could share, but I will end with these highlights from our week and life. Special events that even just a brief mention will bring back good memories for us years down the road. But when I add to all this excitement several late nights of work over the past week, I find myself exhausted and ready to say goodnight. Here's to the memories (and heartbeats :) we create.