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

First Week of First Grade

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

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

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

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

First Day Drama

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

First day of first grade

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

Cafeteria full of first graders

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

Adria waves goodbye with her classmates on Monday

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

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

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

First Grade is Different

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

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

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

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

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

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

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

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

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

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

Daddy and his little man

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

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!

Why is it always a fight?

Opening a letter on Sunday morning should not be so upsetting. But it was.

Of course anytime I open an envelope with the that BlueCross BlueShield logo in the corner, there is a bit of trepidation that accompanies me. The mystery of its contents give cause for fear.

• Will it be another monthly bill with an incorrect amount due? 
• Will they have failed to cover our recent visit to the children's hospital? 
• Or how much will we owe after the 80% coverage of doctors visits and tests?
• How many phone calls will I have to make to correct any errors in our coverage?

After six years of on-going, never-ending medicals needs, bills and claims I have learned...It's always a fight...to get the coverage you're paying good money for.

But still, after six years the disappointment of bad news can ruin my morning. As it did today.

The letter was in reference to NUMOTION - the company that will be supplying Adria with her new wheelchair. We went to AI duPont Hospital for Children in August to have her fitted for a wheelchair for the first time (which you can read about HERE), as she's outgrowing strollers and will likely require assistance for walking longer distances.

I read the words of the letter, "We have completed a review...requesting coverage for services...it has been determined that this item is not eligible for reimbursement..."

How do I describe the subsequent emotions? Annoyed. Frustrated. Angry. Helpless. Discouraged. Overwhelmed. Deep disappointment.

Why is it always a fight?

I'm so tired of fighting YOU - Health Insurance. Fighting for my daughter's health. Fighting for her to be able to get some of her basic needs addressed. Fighting to cover my husband's doctors bills and monthly medications. Isn't it enough that YOU and multiple other health organizations get over $10,000 out of my pocket every year? Is that not enough? Do you just want me to give up and settle for less provision?

Am I being punished for my family's health challenges? I didn't take medications or drugs while pregnant that caused my daughter's birth defect. It just happened. No explanation.

My husband was never an alcoholic or drug abuser before having seizures. They just appeared. No explanation.

But they are on-going things that impact our lives EVERY SINGLE DAY... It's not that I want to constantly use YOUR services. It's that I need to. 

I believe in God, who is the ultimate Healer. And I believe He has healed my family in many ways. Yet I still feel largely dependent on YOU. And vulnerable.

For years, I've had to fight for reasonable prices on medical supplies just so my daughter can have some of life's most basic needs taken care of - emptying her bladder and bowel. We take for granted going pee and poop as needed, but for her it's not so easy. And the fight to figure it all out continues.

And now YOU want me to fight for a wheelchair? Because we all know that if it's not covered, we're talking thousands of dollars. She'll be fine without it I suppose. I hope. I pray.

But I'm not giving up that easily. YOU bring me down and make me cry. But I still have some fight left. As long as I have these people I love around me, I will fight for what's best for them.

I just wish I didn't have to fight so often.

The End.

Preparing for Kindergarten

The teacher asked her young pupils gathered for the first time in their classroom..."Who is excited to start Kindergarten this year?"

There was one loud, jubilant response, "ME! I am!"

Yes, it came from our little Adria. She is counting down the days until Tuesday, September 2 when she officially starts Kindergarten. Adria has her school uniforms, her new Frozen backpack, and all her school supplies. She is ready!

On Wednesday night we attended the Woodbridge Open House with most of her soon to be classmates. Children and parents were able to meet the 2 teachers for this Class of 2027...and learn what to expect for the coming school year.

Mrs. Ramey and Mrs. Lineweaver introduce themselves to their new Kindergarten class
at the Woodbridge Open House on Wednesday.

Adria sits at one of the 3 tables in her classroom, where she will
be one of 18 kindergarten students.

She is in a classroom with co-teachers; having 2 teachers works best
in this class where there are a few children who require extra special care.

While the teachers reviewed the schedule, policies and procedures on
the powerpoint, the children colored a school bus picture.

So many things to learn this year!

Johanna checks out big sister's classroom

Grandma helps Adria fill out questions about her favorite things.

However, the Open House was not Adria's first time meeting her Kindergarten teachers. She and Mommy had stopped by the school for a special visit on Monday afternoon, when she had the privilege of being the first student to see her classroom and meet her teachers.

As we prepare to embark on this new adventure - Full Day Kindergarten in the local Public School - it was necessary to create a plan for our Adria with the school nurse and her teachers.

I am extremely thankful that she has the health and intelligence to learn in a "typical" classroom environment, as that is sometimes not the case for children with spina bifida. However, she will require some attention and provisions that are not so "typical."

Fortunately, her school is literally just a block from where I work, so I have that peace that I could be available on short notice when needed. The other great aspect is that they will provide the services Adria needs to perform well in school.

I was glad to meet Nurse Dawn, who just started at the Early Childhood Education Center this year, but has years of experience with home care for special needs children and specifically with catheterization. That has been a concern for me over the summer...Will the school nurse be comfortable and capable of taking care of Adria?

Though I will be close by at work, I would not be able to do it every time it's needed. And I have learned over the years that not all nurses have experience or a comfort level with cathing.

(To learn more about what it means to Catheterize Adria, please read this post - LEARNING TO CATHETERIZE A TODDLER GIRL.)

The Plan for Adria

When Adria first met the nurse, she acted shy. But as I started to share with Dawn about Adria's spina bifida and what to be aware of at school, my little girl piped in..."Yeah, I was born with a bubble on my back!" It made me chuckle, but also get a bit emotional.

If you don't know about the spina bifida "bubble," read WHAT EXACTLY IS SPINA BIFIDA.

As I started talking with the nurse, it became clear that we really should involve Adria's teachers in the conversation at the same time. The nurse called her classroom and soon Adria was meeting two attractive women in their late 20s who would be co-teaching her class.

We discussed the following for Adria:

• Catheterization Plan: She typically needs her bladder emptied every four hours. Mommy would take care of it before we leave the house at 8:30 a.m. Adria's teacher will bring her to the nurse's office right before lunch at 12:30 p.m. for Nurse Dawn to catheterize her and ideally that will be all she needs until school is out at 3:55 p.m. (It's a long day!) 
• Emergency Cath Plan: However, if Adria starts to feel pain in her stomach, she may require cathing at other times of the day. We talked to Adria about just asking her teachers to come see Ms. Dawn when she feels like she has "Ouchies."
• Bowel Issues: Adria does not have bowel control, so if they started smelling something stinky, she should come to the nurse then too and have her diaper/pull-up changed.
• Leg Braces/DAFOs: Adria needs to wear her leg braces at all times at school, as she has limited sensation in her feet and weak ankles and we want to avoid injury.
• Walking and Steps: Adria is very mobile and walks well, however she may go slower and tire faster when walking long distances. She can walk up and down steps, but it takes a little longer for her.
• Spina Bifida scar: I showed them the markings on Adria's lower back where her surgery scar and reddish skin remain evidence of the "bubble" she had at birth. This way they would not be surprised if they saw it and wondered if she was okay.
• Heat Exhaustion: Due to wearing long socks and leg braces, Adria can overheat quickly when playing outside on a hot day. Plus, overheating is one of the side effects of a medication she takes.
• Medicine: Adria has several daily medications, but only one she needs to take in the middle of the day. The nurse can give her that before the 12:30 cathing.
• Drinking Water: It is critical for Adria to drink a good amount of water during the day. This helps reduce the risk of UTIs (Urinary Tract Infections) and prevent bladder pain.
• Physical Therapy: She should be scheduled to have weekly physical therapy sessions during school hours that we will need to plan around.

I talked for a while about all these things. Then I paused and looked at her teachers and nurse and asked, "I'm sorry, is this overwhelming? There's just a lot to be aware of."

Suddenly, in speaking those words I felt overwhelmed. Is this really going to work? Sending our daughter to kindergarten, where she'll be in the care of other people all day with hundreds of other kids running around?

The tears began to fall. I was annoyed. Why can't I keep it together? 

But the women in the room with me were understanding and reassured me that it was no problem, and they were excited to have Adria in school. A moment later, one of Adria's pre-school teachers from last year walked in.

Adria squealed in delight and ran to give her a hug. She loved pre-school, and I know she'll love kindergarten. We can do this!

The teachers then gave us a personal tour of what would be Adria's classroom, which is nice and big, and we learned that one of Adria's closest friends from pre-school would be in her class. That made both of us happy!

Adria poses at the Open House with three of her best buddies from pre-school last year
and the boy on the left is her second cousin. They will all be in Kindergarten
at her school, and the little girl on the left will be in Adria's class! Those two
were physical therapy partners and close friends last year. 

It put my heart at mind and ease to see the kindness and care of her teachers and Adria's excitement. The only trouble was trying to get Adria to leave the classroom...she was rather stubborn.

Johanna tries out the bed where Adria will be cathed at school.

But we still had to go back to the nurse and demonstrate our system for catheterizing Adria. Again, I was glad to see that there are good provisions for a private place to take care of Adria. Nurse Dawn had even rearranged her office so there is a small bed where a curtain can be pulled around it for
privacy.

Adrian and my mom talk to Dawn, the school nurse, on Wed.

When we returned on Wednesday for the Open House, I introduced my husband to the nurse and my mom was with us too. Mom ran up to Nurse Dawn and gave her a big hug...apparently my mom knows her from years ago in Girl Scouts! That added another level of peace to the situation.

Though it makes us somewhat nervous to be sending Adria off to school, we trust that she is in good hands and see God's provision all around us. Fortunately, Adria has no fear at all about it. She's so ready!

Her teachers even passed a microphone around the class at Wednesday's Open House and asked the students to say their name and favorite thing to do. Adria was the first to go and happy to announce that she likes "Going to Grandma's house and playing dress up!"  My mom liked that response :)

It's hard to believe the time has come, but now I think we are ready to send our baby girl to Kindergarten. Adria is more ready than any of us!

Surgery for my baby?

Healthy children are a precious gift. A treasure that should not be taken lightly.

And we are blessed with a super healthy little girl named Johanna. She's so healthy that she could run around constantly all day, stopping only for her afternoon nap (which thankfully can last over 2 hours).

It's almost strange how little time she's spent with doctors or on any medication, considering how regularly we were meeting with doctors the first couple years of Adria's life and how she's still on several daily medications.

In fact, early this year I was so preoccupied thinking about Adria's appointments that I completely forgot to schedule Johanna's two-year-old well visit. It wasn't until I tried to register her for fall pre-school that I realized it. Oooops! She was only about 4 months late on that...

However, more than a month ago our healthy 30 month old daughter suddenly had an onslaught of illnesses.

• First, it was a bad cold and allergies that caused her to regularly get sick all over the bed or couch or carpet.
• Second, she got a terrible ear infection which caused her nose to be constantly runny.
• Third, she got a urinary tract infection (something we are familiar with Adria having due to catheterizing but never Johanna).
• Fourth, she got a case a pink eye, likely from wiping her hand over her snotty nose then rubbing her eye.
• Fifth, she got another ear infection that actually had dark mucous coming out of her ears...gross!

What is the deal here?! For the first time, we were visiting the pediatrician on almost a weekly basis for Johanna. We were not being neglectful parents, but our poor little baby just had the issues piling up. It was so unusual for her.

And THEN, after all that, she got an inflamed skin lesion in a...not so pleasant potty area (there are certain words I will not type). It caused her a great deal of pain and almost made mommy cry to watch her struggle. The pediatrician told us that Johanna might need to have it surgically removed. Really?!

The pediatrician scheduled a time for a consultation with a general surgeon. We go to Nemours Pediatrics in Seaford, which is affiliated with Nemours at A.I. duPont Hospital for Children in Wilmington. Once a month a specialist from A.I. comes down to southern Delaware to meet with patients for consultation.

Today was that appointment. Both the girls and I arrived at the doctors before 9 a.m., and I was expecting to leave with a scheduled date for surgery. Thankfully, that was not the case!

The doctor said these "skin tags" are fairly common, and he only operates on about 1 in 20 cases that he sees. Fortunately the lesion had gone down over the weeks since we first saw the pediatrician about it, and the surgeon felt that continued attention to a high fiber diet and using stool softeners when needed should allow it to heal. However, if it continues to bother her or gets enlarged, call him. 

I think I'm good with that. I just hope it heals and does not continue to trouble her.

It was pretty funny watching Johanna today. She had obviously become accustomed to being at the doctor's office more. She eagerly stood on the scale to be weighed and measured, acting like a champ...when she wasn't crawling under tables or trying to play with medical equipment. That said, she did NOT appreciate having her blood pressure taken.

Little Johanna growing so fast, measuring almost 3 ft. tall.

She measured just shy of 3 ft. tall and weighed in at 33 lbs. 9 oz. At over three years younger than big sissy, she's catching up quickly. Johanna is just 3.5 inches shorter and about 12 pounds lighter than Adria! People often ask me if they are TWINS. I think that's hilarious!

Hi Nurse, whatcha got there?

Ouchy! This blood pressure thing squeezes my little arm.

At the end of the day, I very am thankful we are not having to schedule another trip up to A.I. duPont for Johanna to have surgery. If you read my last post, you know we were just up there for a Full Day with Adria.

I said it before, and I'll say it again. Healthy children are an immense blessing. Treasure them. Of course, children who have countless health challenges are also blessings, they give you the chance to learn what selfless love is all about.

October is spina bifida awareness month

Every October the color Pink becomes more popular. From NFL players sporting it to pink windshield wipers available at your local service center, the campaign for Breast Cancer Awareness is widely publicized. Let's face it, saving the tata's is a popular cause.

However, a much lesser known cause also shares this month. October is spina bifida awareness month.

Even I, a mother of a five year old with spina bifida, did not realize this until recently. But now I will take this opportunity to spread the news, and also share that pale yellow is the official color for spina bifida awareness.

Another spina bifida mother wrote the following article that provides a great summary of what spina bifida is and how people are impacted by it.

Column by Pam Rasmussen: October is spina bifida awareness month: October is spina bifida awareness month. Although most of you probably don’t know a lot about the birth defect, it is the most common permanently disabling birth defect in the Unites States.

A couple months ago, I also wrote a more detailed article about what spina bifida looks like and how it happens. You can read here, What exactly is Spina Bifida?

The most important awareness to spread about spina bifida is how to prevent it. It's not a guarantee, but the one factor that studies can prove reduces the likelihood of spina bifida occurring in pregnancy is Folic Acid. Women of child-bearing age should take a daily vitamin with at least 400 mcg of folic acid, more if possible.

Children and adults with spina bifida often lead active and fulfilling lives, but there are many ways that this birth defect impacts them. Following is a quick summary:

• Paralysis/Lack of sensitivity in legs
• Fluid on the Brain often requires shunt
• Limited or total lack of bladder and bowel control
• Regular catheterization and bowel management programs
• Frequent UTIs (urinary tract infections)
• Obesity and weight challenges due to limited activity
• Shorter stature as a result of weakened leg muscles that limit growth
• Educational and learning delays, often related to complications with the shunt
• Club feet or smaller than average feet
• Strong upper body strength that compensates for paralysis in legs
• Mobility possible with assistive devices such as leg braces, crutches, wheelchairs, etc.
• Social difficulties as growing children adjust to being "different"
• Depression due to the daily challenges they face
• Multiple medications taken throughout the day and regular doctor visits
• Regular surgeries related to shunt, bladder or legs
• Large scar on the back from where the spina bifida lesion was located at birth

This photo shows Adria's spina bifida scar just over a month after she was born.
Photo credit Ruth Kauffman.

As a mother, my goal is that our daughter learn as much as she can about herself and not be defined by spina bifida, but adapt to its impact on her life and pursue her strengths!

What exactly is Spina Bifida?

When it comes up in conversation that my daughter has Spina Bifida, people usually find polite ways to say they are not too familiar with what that is. I am never surprised by this, as I would be in the same place had it not become so personal to me.

The hard part is, coming up with a quick and simple answer to the question - What is spina bifida?

As is the case with many medical conditions, particularly those that occur before birth, an easily explained definition is hard to come by. Even for we parents, it is an on-going education as our child grows.

That said, here is my best attempt at a mother's quick answer to this question: She was born with spina bifida. It happens early in the pregnancy when the spinal cord doesn't form properly, which leads to nerve damage that can affect many areas, specifically her ability to walk and run.

Ok, that was easy enough. That answer satisfies most inquisitive minds. However, for the close friends who want to sit down and chat over an after-dinner coffee, the answer is much more complex and detailed. Since I won't have the opportunity to sit with most of you, go ahead and pour yourself a cup of coffee and read on.

Here is an education on spina bifida from my non-scholastic perspective.

The term spina bifida literally means "split spine" in Latin where the spinal column or neural tube does not close all the way while the baby is growing inside mommy. This occurs just about 28 days after conception, usually before mom even knows she's expecting. The cause is unknown and there are many different types and levels of severity when it comes to spina bifida, but the facts are that it is the most common permanently disabling birth defect.

Spina bifida is estimated to occur in 1 out of every 1,000 births worldwide, with a slightly lower incidence rate in the U.S. The Spina Bifida Association claims that every day about eight babies born in the U.S. have spina bifida or a similar birth defect of the brain and spine.

The image below comes from the Mayo Clinic website, and shows the progression of a life beginning to form and how spina bifida occurs.

Those nerves in the spinal cord that never formed properly to begin with, cannot magically grow back into place and start working. Children can learn to function well and adapt to lack of sensation in their limbs and limited bowel/bladder function, but whatever the initial damage is remains. Modern medicine has progressed significantly over the past few decades to help prevent further damage to the spinal cord. Just 100 years ago, the life expectancy and quality of life for someone with spina bifida was significantly worse.

The types of spina bifida have such a broad range that those with the more mild forms may not even know they have it, while others with the most severe are completely wheelchair bound and paralyzed.

I will refer to an information sheet from the Spina Bifida Association of America, to explain the different types:

Occult Spinal Dysraphism (OSD)
Infants with this have a dimple in their lower back. Because
most babies with dimples do not have OSD, a doctor has
to check using special tools and tests to be sure. Other
signs are red marks, hyperpigmented patches on the back,
tufts of hair or small lumps. In OSD, the spinal cord may
not grow the right way and can cause serious problems
as a child grows up.

Spina Bifida Occulta
It is often called “hidden Spina Bifida” because about
15 percent of healthy people have it and do not know
it. Spina Bifida Occulta usually does not cause harm,
and has no visible signs. People find out they have it after
having an X-ray of their back, normally done for other reasons.
However, in a small group of people with SBO, pain and
neurological symptoms may occur.

Meningocele
A meningocele causes part of the spinal cord to come
through the spine like a sac that is pushed out. Nerve
fluid is in the sac, and there is usually no nerve damage.
Individuals with this condition may have minor disabilities.

Myelomeningocele (Meningomyelocele), also called Spina Bifida Cystica
This is the most severe form of Spina Bifida. It happens
when parts of the spinal cord and nerves come through
the open part of the spine. It causes nerve damage and
other disabilities. Seventy to ninety percent of children with
this condition also have too much fluid on their brains.
This happens because fluid that protects the brain and
spinal cord is unable to drain like it should. The fluid builds
up, causing pressure and swelling. Without treatment, a
person’s head grows too big, and may have brain damage.
Children who do not have Spina Bifida can also have this
problem, so parents need to check with a doctor.

Unfortunately, the most severe type is also the most common type of spina bifida and that is what our little girl has - myelomeningocele.

As the image above demonstrates, with this type of spina bifida, the baby's spinal cord literally protrudes from her back in sac, or a bubble as we try to explain it to our 4 year old.

This sac can protrude anywhere from the lower spine, which is most typical, to one of the vertebrae at the top of the spine. The higher the lesion is on the spine, the worse the permanent damage. Amazingly, a child's function can vary significantly even if it's just one vertebrae higher on the spine. At the children's hospital, the doctor recently referred to Adria as "one of our L-4/L-5 kiddos." That is where her spina bifida occurred in the lumbar region of the spine and those that know about it, have a good sense of her abilities with just that statement.

The below diagram of the spine from spinabifidaassociation.org, details the different regions and expected functional abilities based on where the spina bifida occurred.

Now, all that may seem like a very lengthy, detailed description of this life-altering condition. Really this is just the beginning.

Because the spinal cord is the core of our central nervous system, damage from spina bifida can be far-reaching. This includes problems with walking and getting around, ability to go to the bathroom, hydrocephalus, gastrointestinal disorders, obesity, latex allergy, tendonitis, depression, sexual issues, and possible learning disabilities.

As the doctors say, every child is unique and no two individuals display all the same symptoms and challenges.

It is a daily education for us to learn our daughter's needs and how to best equip her for a full and fulfilling life. Through it all, there is one thing that remains the same, one thing that every parent can do to give their children the best life, disability or not. SHOW them LOVE.