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.

Best things come in Small packages

"I don't want to do potty time tonight!" Adria said with frustration. Then she started to cry, "Mom, I wish I wasn't a Spina Bifida person."

My heart sank. I can't take this away. I can't make it better for her. I can't promise that she won't always have these nightly, uncomfortable routines. I can't even relate to what her life is every day. I can only try to encourage her through it all.

She stood there weepy-eyed, draped in a towel by the toilet. I gave her a big hug.

"I know it's tough, Sweetie, but I'm so proud of you," I said, "Do you want to talk about it more?"

"Well, I want to go potty on my own like everybody else. And, I wish people wouldn't call me LITTLE!" Adria added. "There's only 2 people in my class shorter than me."

Adria is very short for her age. But she's right, there are two other sweet little girls in her class. So she's not alone and I tried to encourage her that it's ok to be little.

Daddy told her, "The BEST things come in SMALL packages!!"

I loved it. I hope she can hold onto that.

Adria strikes a pose in her "co-worker" style school uniform, new boots and mommy's hat, gloves and glasses. Stylin'

Because after our hug and little chat, we had to do the same uncomfortable potty routine that we do 4-5 nights a week. It's called Peristeen, and it's an advanced enema system with a pump that enables us to flush out her bowels and large intestines. Usually, Daddy and I work together with Adria as that makes it easier on all 3 of us. That part takes just a few minutes, but then Adria has to remain seated on the potty for 30-45 minutes to allow her stool to come out.

It's stinky and unpleasant, but she uses the time to read books or watch cooking videos on the iPad. And when she's done, we catheterize her for the fourth and final time of the day, emptying her bladder before going to bed.

It may be no fun, but this system has dramatically improved things for her - she has now been wearing panties instead of diapers for a year. She still has an accident at school once in a while, but she wears a pad to help with that. It's great that she doesn't have stinkies often in her diaper anymore...that's sooo NOT cool as a 7 year old.

And this little first grader is quite smart. Adria just brought home her report card and got straight A's once again this second quarter! She doesn't even realize what that means, she just enjoys school and expects to get most things right...haha. That may be hereditary ;)

Happy girl posing last week after our only big snowfall of the winter.

Moments of sadness and grumpiness are tough, when she seems keenly aware of her differences, but I am so very encouraged by the incredible young lady she is becoming!

It's true, some of the best things do come in small packages.

At 7 years old, Adria is only an inch taller than her 4 year old sister Johanna (who likes to try on my boots...)

Adria's new pair of AFOs - Ankle Foot Orthotics. She might not like wearing them sometimes, but at least they can be fun and colorful!

Plus, Daddy found these amazing boots that tie and zip up the back. Yeah for cute shoes that fit over leg braces!

To read more about our journey with bowel management programs, here are some links:

Answer to Stinky Situation

Panties are Priceless

Mermaid Magic

Learning to Catheterize a Toddler

A Day at the Children's Hospital

When the School Nurse called

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.

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!

A FULL Day at the Children's Hospital

"Mommy, I need to see the foot doctor."

We've been hearing this line from Adria for over a month now. Really, ever since she had to go two weeks without her leg braces.

This week she finally had the chance to see her foot doctor. And her brain doctor. And her bladder doctor. And her developmental doctor. And her specialized physical therapist.

A couple times a year we travel north to Wilmington's Alfred I. duPont Hospital for Children for the Spinal Dysfunction Clinic (SDC). Because spina bifida impacts so many different functions of the body, it works best to schedule a time when the various specialists can take turns talking with you during the same visit.

Adria saying hi to the fishies while waiting for her kidney ultrasound and urodynamics study.
Don't you love her princess high-top sneakers?

On the one hand this is great because it saves us multiple trips throughout the year, and the hospital is 1.5 hours away. On the other hand, it makes for a very long day and repeating ourselves several times as we talk with each specialist. 

Last Tuesday we were in the hospital from 9:30 a.m. to 3:45 p.m. for these visits. Adria held up pretty well, but as soon as we got in the van to head home, she clonked out.

You might be wondering, how it went for her and why it took all day? Let me break it down for you.

But first of all, her stats. She weighed in at 45 lbs. and stands 39.5 in. tall - this puts her in the 60th percentile for weight and the 3rd percentile for height. My little cutie!
I love that she can stand against the wall now to get her height measurement, for years she was not able to do that on her own.

This was her schedule for the day, however it ended up being much different as appointments went long and were moved all around.

• Dr. Campbell - Pediatric Nuerosurgeon: He and his physician's assistant monitor the amount of fluid on Adria's brain (often through MRIs and Cat Scans) as spina bifida often causes Hydrocephalus. Adria had this and at six months old had a new procedure called Endoscopic Third Ventriculostomy to lessen the build-up of fluid on her brain. He gave us great encouragement, saying that children who've had the procedure done with no complications for more than 5 years likely never will have issues! He reminded us to stay on the look out for signs of tethered spinal cord, as this can cause issues when children go through growth spurts.

• 

  The Physican's Assistant for Dr. Campbell takes a look at Adria's legs.

• Dr. Conner - Orthopeadic Doctor: He checks her legs, hips and joints and provides prescriptions for her leg braces a.k.a. AFOs (Ankle Foot Orthotics). He took a close look at her legs and feet and tried to ask Adria where her pain came from. She would just giggle and say, "I don't know." We told him how sometimes she amazes us with how far she can walk and other times she complains about her feet being tired and wants us to carry her. To be honest, he did not have much great insight or advice, but he did notice that her right foot is turning out more.

• 

  Adria's has weak ankles and her feet are pronated, turned outward. The other day she really wanted to try on sister's fancy heals...it didn't go so well. Her ankles could not support her and fell in, she was pretty disappointed.

• 

  A little disappointed that she can't wear heels like mommy and sissy :(

• Rehabilitation Medicine: This team of specialists provides overall support with all her physical challenges including weight management and bowel control programs. They were pleased to hear about her success in pre-school and gave advice to prepare for kindergarten. Their biggest recommendation for the day was to consider getting Adria fitted for a WHEELCHAIR... My initial reaction is to say NO, since Adria is getting around so well on her own. However, it would only be used in unique situations like outings that required extensive walking or emergencies at school. Apparently, it can take over six months between getting fitted for a wheelchair and actually getting one, so they suggested we start the process in the near future...

• 

  Rehab Medicine and Physical therapist put on Adria's braces after watching her walk around without them. Adria showed off "running" up and down the halls once her braces were back on.

• Physical Therapist: She was pleased to hear that since our last visit, Adria has learned to take a few stair steps up and down WITHOUT HOLDING ONTO ANYTHING! This shows incredible balance for her, as she used to need us to hold onto both of our hands to get up and down steps. The therapist did recommend getting a few adjustments done to her braces (DAFOs).

• Kidney and Bladder Ultrasound: About once a year, Adria gets an ultrasound of her kidneys and bladder to check on whether she's having any reflux or other urinary issues. It's really strange to see a little girl getting jelly on her belly much like pregnant mothers get an ultrasound to see a baby. Fortunately, mommy's iPhone made that an easy experience for Adria.
• Urodynamics Study: This is a somewhat invasive study that would probably require many kids to be sedated, but Adria is accustomed to catheters. The urology technician actually places catheters in her and sensors on her to test bladder pressure and capacity. It takes about 45 minutes for the procedure, so watching Tinkerbell on TV made this tolerable for Adria.
• Dr. Figueroa - Pediatric Urologist: Finally, after all the testing we saw her urologist and his assistant Susan. Fortunately, Dr. Figueroa said that the results of her tests looked good and her bladder seems to be growing appropriately (some kids require bladder enlargement surgery). We did discuss how we are again struggling to keep Adria's diapers clear of stool and this is a concern as we prepare to put her in full day kindergarten. Susan talked with us about a new bowel program that the hospital has recently started using called Peristeen. They have 10 families using it with good success, so that's the next thing we'll be looking into!

All in all it was a good visit with encouraging news on Adria's progress. We did leave with two major things to consider and investigate - getting Adria fitted for a wheelchair and changing her bowel routine. It's an ever learning, ever changing experience with spina bifida, but Adria truly is a blessed and healthy girl!

One of Those Days

Today has been one of those days, especially for Daddy. A day when life seemed determined to be frustrating.

It started early when he had taken the girls outside for some play time this morning and then CRACK, Adria's leg brace broke right along the ankle. If you saw our last post, you know that she had just broken her normal brace at the heel. We will be waiting another week for the new pair of DAFOs (Dynamic Ankle Foot Orthotics) to arrive, so we were trying to make her old pair work. They had a small crack that Daddy had taped, but apparently that wasn't good enough. Again it was on the left foot, and the crack nearly broke it in half!





Daddy tried to reach me at work, but I was in the middle of two hour meeting reviewing our cabinet and flooring offerings. He wanted to discuss Adria's braces and her options before trying to send her to pre-school, but I took too long to get back with him. He ended up keeping Adria home, since she has very limited mobility in public without her braces. She can walk some, but easily falls and could injure herself.

I called her orthotist (brace maker) to see if he could offer a temporary fix. He said they would try to rush our order, and we should have the new braces by mid next week. He could try to weld them together at their Wilmington location in AI DuPont Children's hospital, but there's no guarantee that would work.  We decided to try the Daddy Fix-it route for now and hope they can hold up for the next week! We'll just keep her out of the braces when we can.



That was just one thing. Then there was Daddy trying to work on an issue with our car that became extremely difficult. With Adria staying home from school, the girls seemed agitated at the change in routine and were extra temperamental. There were many other challenges that don't need to be detailed, and of course this all happened on a day when I had to work late.

Once I got home the dinner I had planned did not go at all as planned, but it still worked out. We needed to run to Milford to pick up some prescriptions and a few other things, but as we were preparing to leave, Adria started having some bowel trouble. We took care of her but didn't leave the house until late. About 45 minutes later when we were walking around the store, Daddy smelled something terrible. It was Adria. Her bowel issues had returned... and Mommy was clear on the other side of Wal-mart. Eventually he found me and I took her to the bathroom to get cleaned up.

It was almost 9 p.m. by the time we headed home, which meant it was past 9:30 before the girls got to bed. Much later than we like.

Finally, we settled on the couch for some quiet and rest. I had just gotten ready to type up a blog, when I heard a cough and cry followed by a desperate plea for "Mommy!" I went in the girls' room to find Johanna, her pillow, and the blankets covered in milky puke. (Forgive me, I know this is nasty, but sometimes you've gotta be real about parenthood!) This is the second day in a row our poor little girl has vomited for no apparent reason. We are getting concerned because it's not like a normal stomach bug, and she's had an unusually decreased appetite lately.

So there was no rest for the weary. While I quickly hoisted Johanna out of bed and into the tub where her troubles continued, Daddy came and began clean-up in the room. All the bedding was impacted by this incident, and Adria had to get up too since they now share a bed. There was nothing pleasant about the experience. As I washed the filth out of Johanna's hair and wondered what was troubling her, I was so thankful that I would not have to clean up the bed too. Even with this final blow on a very frustrating day, Adrian still stepped in and cleaned it all up and made up the bed with fresh sheets. I owe him!

Now the washer full of the soiled sheets just stopped running, and I can put them in the dryer. Time for some rest. Tomorrow is another day.

Folic Acid is critical for Women of Child-bearing Age!

Last night, as we were getting ready for bed my five-year-old daughter asks, "Why do I have to sit on the potty every night?" I explained that everyone has to go potty every day to get rid of some of the food we eat and for her it works best to do it at night.

Because she was born with spina bifida, the nerves on her lower spinal cord never formed properly in my womb, so she has almost no control over her bladder and bowel function. This year we've developed a good "potty" routine that involves giving her an Enemeez, a mini enema, every night followed by 15-20 minutes of sitting on the potty.

After thinking about my response for a minute, Adria asked me this question. "Mommy, does anyone else in my world use Enemeez?"

I thought it was so precious how she worded that. She seems to be gradually understanding that certain things are different for her than others, but it doesn't seem to bother her much. In her world, no one that I know of uses Enemeez. However, we have met over a dozen people with spina bifida in her lifetime and most of them require crutches or a wheelchair for mobility, while she only needs leg braces.

Overall she is very healthy, but spina bifida does have a big impact on her life. In fact, it reportedly impacts nearly 166,000 Americans and about 70,000 of those have the severe type like my daughter called myelomeningocele.

This image shows what a baby with Spina Bifida (Myelomeningocele) looks like at birth.
Like most of these babies, my daughter had surgery to close this opening within 24 hours of birth.

Spina Bifida is one of the most common permanently disabling birth defects. January is actually National Birth Defects Prevention Month, and I'm a little late but January 5-11th was Folic Acid Awareness Week. I'd like to take this opportunity to share a very important message with all of you, but specifically those women of child-bearing age.

Though I love my daughter dearly and wouldn't change a thing about her, I would encourage any woman to do the best she can to prevent this from happening to her child.

Why does Spina Bifida happen?

While there are no specific known causes for spina bifida, it has been found to be most common among Hispanics and people of European decent and affects more female babies than males. According to www.spinabifia.net, obese or diabetic mothers are at a higher risk (I am neither) and some anti-seizure medications may be a factor in spina bifida occurance. Studies also suggest that mom's prolonged exposure to high temperatures, like in a hot tub, early in pregnancy contribute to causing the birth defect.

An interesting fact that I recently learned is that Scotland has a higher rate of Neural Tube Defects like spina bifida than other European countries. This is somewhat significant as my mother's family is of Scottish origin, though there is no known history of spina bifida in our families.

How to Prevent Spina Bifida

Here's the important part! While there is no specific cause, there is a proven method of PREVENTION. That is through the intake of Folic Acid prior to pregnancy.

The American Pregnancy Association recommends the following:
Spina bifida is best prevented by taking 400 micrograms (mcg) of folic acid every day. Studies have shown that if all women who could become pregnant were to take a multivitamin with the B-vitamin folic acid, the risk of neural tube defects could be reduced by up to 70%.
Folic acid is a water soluble B-vitamin that helps build healthy cells, but it does not stay in the body long. It is important that women take folic acid every day to help reduce the risk of neural tube defects. Since half of all pregnancies in the United States are unplanned, women of childbearing age – even if they are not currently planning to get pregnant – should take 400 micrograms (mcg) of folic acid every day to reduce their risk of having a child with Spina Bifida

Ironically, I remember reading in a magazine when I was a young woman about the importance of taking a multi-vitamin with Folic Acid, so I did. However, pre-natal vitamins usually have even more Folic Acid, around 800 mcg, and it's recommended that you take at least that amount daily when trying to get pregnant. I was not on a pre-natal vitamin when I got pregnant with Adria.

It's hugely important that you are taking this BEFORE YOU GET PREGNANT, because spina bifida and other Neural Tube Defects occur just 28 days after conception. That's right, by the time you know you're pregnant the spinal cord has already formed properly...or not.

Now because I have a child with spina bifida, I am 20 times more likely to have it occur again. Yikes! To significantly reduce this risk, I took 4 mg (or 4,000 mcg) of folic acid every day for several months prior to trying for #2.  I did have an early miscarriage first, but I became pregnant again and now have a super healthy two-year-old girl. Even when I'm not "trying" to get pregnant, I still take at least 1 or 2 mg of folic acid a day, just in case...

Special Alert to anyone related to my husband or me!

Genetics are a factor in the occurrence of spina bifida. Therefore, if you are in any way related to our family, you are by default at a higher risk of having this happen. Sorry about that BUT you should take extra measures like I do and regularly take high doses of folic acid, especially if you are hoping to have a baby.

This is still not a 100% guarantee to prevent a birth defect, but there is an interesting story behind the study proving that folic acid is important to this end. I encourage you to take a few minutes and watch it.

Give Babies a Chance

Having said all that, if you are like me and find yourself 20 weeks pregnant and learning after an ultrasound that your baby has a birth defect, give your baby a chance. The doctors will most likely ask you (several times) if you want to terminate the pregnancy. Please don't. Give your baby a chance. My baby is a beautiful gift and worth every ounce of extra effort!

Last summer, I met an incredible couple who had recently lost a child to Anencephaly. This is another type of Neural Tube Defect that is rare and significantly more severe than spina bifida. The baby is actually born without fundamental parts of the brain and skull, and almost all die shortly after birth. Though they knew this, the couple decided to carry the baby to full term and held their son for the short hour that he lived once born. Their story touched me as I cannot imagine that difficult experience.

A 2004 report from the Center for Disease Control claims that there has been a 27% decline in pregnancies affected by nueral tube defects (spina bifida and anencephaly) since the United States began fortifying grains with folic acid. That's a great start, but you should be intentional in folic acid intake as you prepare to get pregnant.

I know this is a lot of information, but I do hope that you take it to heart and share it with any friends or women you know of child-bearing age.

EAT FOODS HIGH IN FOLIC ACID AND TAKE A SUPPLEMENT

Now let's continue to get the word out!

Failed 2013 Resolutions...Try Again?

Without even realizing it, I was taking the advice that my husband shared in the last blog. Instead of just asking "Why" to life's challenges, I was trying to move beyond into "How do I move on from here?"

I saw the beginning to 2013 as a great opportunity to refocus and motivate myself. For various reasons, the year before was incredibly challenging for me, but mainly I think it was due to battling with post-partum depression. I had no issues with it after Adria's birth, but in spite of Johanna being a beautiful and healthy baby girl, my hormones played games with my emotions for much of the year. Though I tried to hide it from the public, Adrian had never seen me struggle so much to bring myself out of a funk. The only redeeming aspect was that it helped me to better understand Adrian and his battles with depression.

As I began to see the rainbow through the clouds, I put together a list of New Year's resolutions to guide my thoughts and efforts. I recently found the list in a notebook, followed by pages of notes about interviews and To Do lists for moving. I did not expect to fill the notebook with all that when I wrote the list on January 8, 2013.

Maybe the list was a bit over-ambitious, but I had reason to believe that many of these goals could be achieved with our lifestyle in Virginia. In the end, the last item on the list was really the only one that was achieved...but arguably that was the most important one.

Here's the list of my goals and dreams for last year, along with some explanation.

1. Sell 40 Homes - 5% of Region's total

2. Achieve Senior SMR status

3. Sell out of Cedar Run and move to Chesterfield community

• These first 3 goals all had to do with my job as a new home Sales and Marketing Rep with a large national builder. I had worked for this company for 6 years and in 4 different states. The Richmond region was truly dynamic with great people and was experiencing incredible growth, and I was hoping to be a part of their goal to sell around 800 homes in 2013. I was disappointed to have to leave so suddenly in April when we moved back to DE, but I know they did great!

4. Establish Regular Date Night with Adrian

• As a working mom, my dear husband can sometimes feel like he's not a priority with my work and my girl's needs always taking my attention. Time alone as a couple needs to be planned or it won't happen often. We are getting better at this with lots of family around now to help with babysitting.

5. Run 2 Half-Marathons

• This shouldn't have been too hard, since I ran the Indy 500 half-marathon in May 2012 (six months after Johanna was born) but I never really committed last year. I jogged regularly, but did not do a long, organized run.

6. Write - Housing Market Richmond Examiner

• I knew I wanted to get back into some writing and thought I'd try this route. Back in 2010 I had started a "Working Mom Indianapolis -Examiner," but things in life changed after the first few articles and that's where it ended. Though, I never signed up with Examiner.com, I did start this blog and have enjoyed writing again!

7. Attend Church 2x a month

• As a new home sales rep, I've spent the last seven years working 3 weekends a month. Yes, that gets very old, but it's necessary in this career. However, it made it very difficult for us to get to church regularly, though I did find a few great churches in Indiana and Virginia. With my new job, I do have off two weekends a month, so this has become an easier goal. You don't need church to be a Christian, but I have learned that my heart longs for the fellowship and corporate worship that church should provide.

8. Write a short children's book

• This is still on my list, and I think that I will get to this in 2014. I have so many ideas, it's just getting them on paper and then the work (which I dread) of trying to find a publisher.

9. Get Adria established with bowel program

• I actually feared this resolution the most. My precious little 4 year old, who was very capable in almost every way, could not empty her bowel properly (i.e. she's not able to poo like most of us). It was a stinky problem with no easy solution. We tried many different techniques last year, and we are fairly pleased with the success of our current routine. This is huge, because Adria is now 5 and we don't want her to be embarrassed by stinky diapers in pre-school. Now...my goal is to potty-train her 2 year old little sister by the end of spring. It'll be our first traditional potty training experience, and it scares me almost as much!

While I did fail on achieving most of this list, it doesn't bother me too much. As you know if you've been reading along these last few months, 2013 was another wild year for us with unexpected events and big surprises. Some were difficult and others were incredible. While I think it's important to set realistic goals in life, it's even more important to be flexible when the attainment of those goals gets out of reach.

As we sit on the horizon of 2014, I dare to be encouraged and hopeful for the good things to come this year. And just maybe, I'll get to some of those resolutions that I missed last year.

Did you set any goals or resolutions for this year? Or achieve any from last year? I'd love to hear about them!

 

You want me to pay WHAT for my daughter to go potty?

There are over $3,000 worth of medical bills sitting on my desk that arrived over the last two weeks. Most of them came as a total surprise. This is not a good surprise.

It's upsetting, but I'm used to it by now. After five years of major medical concerns with my immediate family, I've resigned myself to the fact that even with insurance our medical expenses have been and may continue to be over $10,000/year on average. (I really hope it's less this year though!)

Yes, that is a huge number and impossible to budget for, but I try not to let it get me down because I know some families have it much, much worse.

But these recent bills did rile me up a bit. The biggest one was from our catheter supplier that I haven't used since last February and thought I was completely paid up on in October. They sent me a bill for about $500 last month, which I argued. But then this is the lovely bill just arrived in the mail...

That's right, Surprise we think you still owe us $1,322.74! Um...No I don't. Fortunately, it only took me a couple calls to them to resolve this and explain everything. And Praise the Lord, they agreed we don't owe this.

Now, they had better not try again next month!

But really, this catheter issue is a doozy. You may have read my post from September when I was so excited because I thought we had found a great solution to our costly catheter issue (Adria requires 5 disposable catheters a day to empty her bladder).

Unfortunately, I was terribly wrong. It appears they may cost us more than ever. We had started using a new company in July who initially told me it would only be $40/month after our deductible. I just got the first bill from them and they want...$396 a month after insurance! This is just craziness.

You mean to tell me that I have to pay almost $400 a month so that my daughter has the privilege to pee?

Add to that the $78 a month we pay for Enemeez, which are not covered by our insurance at all, but help empty her bowel and the $50+ a month we still spend in diapers for her, and the grand total is over $500 so that my little girl can go potty.

Am I the only one who thinks this sounds absolutely ridiculous???

But before you get riled up like me, please understand that I do not and will not accept this. I have already spent hours on the phone this week with both my insurance and the catheter supplier. We WILL work out a more reasonable payment. This momma does not back down and give in that easily. I've been through this before, and you won't get a penny out of me that I don't think is rightfully due. But once we do work it out, you will get your money.

All of that is with my insurance that I've had, but things are about to change. For better or worse, it's hard to say, but I am directly impacted by the Affordable Care Act a.k.a. Obamacare. Now that I am with a much smaller company that does not offer health insurance the same way as larger corporations, I signed up for one of the new metal plans in the private marketplace (Highmark BlueCross BlueShield.)

These are supposedly the same exact health plans offered by the federal government through Obamacare. Really, the only reason someone should even try to sign up under the Affordable Care Act vs. private insurance is to see if they qualify for the tax credit. From what I've read about my new benefits, we shouldn't have to pay as much for the catheters...but I've thought that before. Time will tell.

These annoying medical bills were made slightly more bearable with the fact that 2014 is off to a good start at work - I sold two new homes this week that together total over $500,000 :)

All-in-all I find myself hoping and praying that this will be the year without an ER visit. This will be the year when our medical costs are less than they have been. And this year I won't be spending days of my life arguing medical expenses. 

Adria during one of her regular visits to the Children's Hospital

A Day in the Life of Our Girls

Yesterday, Adrian and I returned from a glorious four day trip to Virginia Beach in celebration of our ten year anniversary on Friday. Just the two of us spent our days waking up to the sound of the ocean waves, exploring the aquarium, playing disc golf, eating amazing food, getting some freebies after enduring a timeshare presentation, and taking a horseback ride along the beach. It was definitely one of our best getaways as a couple. You can view photos here in case you missed them on the facebook page.


One of my favorite photos from our trip, a horseride on the beach on our anniversary.

But this wonderful time alone would not have been possible without our moms. We are so blessed to have them and greatly appreciate their willingness to care for our daughters. We love our girls deeply, but they do require much each and every day. Many parents of children with special needs never get a break from their daily routines because it is hard to find people willing and able to do what is necessary to care for their child.

Both of our moms (and Ade's sisters) have been supportive and learned what is necessary to keep our girls for an overnight. Adria is five and Johanna is now almost two, and their daily schedule is ever changing with Adria's regular medicine adjustments. My mom kept the girls for the first two days at our house, so Adria could still take the bus to pre-school, and Adrian's mom kept them the last two days at her home in the country.

To make things as "easy" as possible on our mothers, I typed up this schedule of what to expect and what needed to be done for our girls every day. Even thought they know most of this, I bolded all of the medicines just to make sure they stood out.

Girls’ Daily Schedule:

6:30-7:00          Johanna wakes up with a FULL diaper. Best to greet with
                            an 8 oz bottle of milk ;)

7:30                Adria wakes up. Often needs to be catheterized right away (if she did not already wake you at 4 or 5 a.m. with “ouchies”). Give her a cup of milk with heaping spoon of Ovaltine and just shy of a tsp. of Myralex.

8:00                Breakfast time. Pop-tarts, scrambled egg sandwich, and cereal are favorites. New medicine Macrodantin is a capsule. Pull apart and mix with a little applesauce for Adria. Also give her ½ tsp Oxybutanin.

8:30                Get girls dressed and braces on Adria. They usually watch an hour of TV in morning. Sophia on Disney Jr is a favorite.

9:30                Play time, outside if it’s nice. Give them each a cup of ½ apple juice and ½ water.

10:45             Get Adria ready for school. Make sure she’s finished her juice. Give her ½ tsp Senna syrup. Catheterize her.

11:00            Watch for her Bus, it usually comes around 11:20.

12:00            Johanna’s lunch time. Favorite is hard-boiled egg no yolk, cheese, and fruit.

1:30               Jo’s naptime. She still likes her milk before and her lullabies playing. She might talk for a while before falling asleep. You get some rest too.

3:10               Watch for Adria’s bus to return. Her school goes from 12:30-3:00. Wash up then snack and drink. Sometimes a little nap or iPad time.

4:30               Jo awake, never know how long she will sleep… Catheterize Adria. Go outside if nice.

6:00               Dinner time. Whatever you want to make, try to get some veggies in them.

7:00-7:30      Begin night-time routine. Get flush ready with 10 mL of saline in the syringe. Cath Adria and leave cath in. Put flush in end of cath, leave liquid in and pull out.

Insert Enemeez into her bottom and squeeze liquid out. Try to let it sit for a few minutes then sit her on potty for about 15-20 min with iPad.  (Adria does not have bowel or bladder control, read the post "It's a Stinky Situation" to learn more.)

Give her night meds ½ tsp Oxybutanin and ½ tsp of Cystex.

Wash up girls. Brush teeth. Put on pajamas. Give Jo a bottle of milk.

8:30             Say the Lord’s Prayer, read a story, sing a song. Bed time!

10:30          Hopefully everyone is fast asleep for the whole night thru J

Then do it again…

 

Mom sent me this photo of the girls having fun while mommy and daddy were away. They only missed us a little :)

And that's the brief version of a Day in the Life of our Girls. Of course for us, I'm usually taking care of most things that happen before 9 a.m. and after 5 p.m. Daddy is with them all day in between. They keep our lives full and we cherish these early years with them, but it really was wonderful to get some time away from the every day.