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

A New Friend Like Her

"Mom, that was the BEST day of all the BEST days!" Adria proclaimed at 10 p.m. on Saturday night as we left the home of her new friend.

It was a special evening as Adria, Johanna and I got together with a family we had randomly met months before at a local festival. We had walked past a sweet, young girl with leg braces sitting on the curb next to her wheelchair eating some chicken fingers.

We said "Hello" and Adria was pleased to learn that she and the girl named Mallory had much in common. They were both 7 years old, liked the color pink, and were born with Spina Bifida! Mallory's mom and I were excited to discover we live less than 30 minutes apart, so we made plans to get together. And 3 months later we finally did!

Mallory and Adria meet at the Apple-Scrapple festival in October

Since that day, Adria has talked about Mallory often. It really made an impression on her to meet another girl like her. She doesn't have any local young friends with spina bifida, and she doesn't really remember the SB friends we had met in Indianapolis.

More often lately, Adria sighs and gets sad about the fact that she's the only one at her school that has to where leg braces and can't go to the bathroom like the other kids. Being with Mallory on Saturday night was a special treat for all of us. And we found the girls have other things in common...they LOVE Shopkins and Pizza!!!

Shopkins...they're all the rage with little girls today!

We went out to dinner and while Adria and Mallory enjoyed their slices of pizza, Johanna got along well with her 5 year old younger brother and I enjoyed talking with her mom Nikki.

Mallory, Mitchell, Johanna and Adria have fun at dinner together.

It's kind of great to be able to talk with another mom who completely understands and has experienced the broad spectrum of things associated with a child who has spina bifida - Level 2 ultrasounds, hydrocephalus and shunts, back and head surgeries, AFOs (leg braces), catheterization options, Peristeen bowel program, urinary tract infections, wheelchair fitting, needing diapers at school, urodynamics studies, and so much more! We could totally relate and shared ideas and experiences.

Mallory is several months older than Adria, so she is in second grade. She can get around at home with her walker and primarily uses her wheelchair when in public. In 2014 Mallory was the Eastern Shore Ambassador for the March of Dimes organization that raises funds and awareness for babies born prematurely and/or with birth defects.

After dinner, we watched the musical production of "You're a Good Man, Charlie Brown" at a local high school. Adria and Mallory sat side by side and enjoyed the show.

Two girls enjoying the show...and comparing their AFO styles (leg braces)

The adventurous younger siblings had fun but didn't sit still too well :)

Mallory says hi to "Sally" from the Charlie Brown show 

Johanna poses with PigPen

Just before leaving Mallory's home, I took Adria to the bathroom to catheterize her - we have to about every 4 hours during the day, which is the same for Mallory. When I was taking care of Adria, she looked at me with a smile and said, "I bet Mallory knows what we're doing, since she has to cath too." Simple things like this, knowing that she has a friend who understands what her life is like, really meant a lot to Adria.

And so Adria had her official BEST DAY EVER...for now.

Today, January 20th is the "International Day of Acceptance" encouraging our society to continue embracing people of all abilities and becoming more educated on how to empower and support them and their families. I'm believing for great opportunities throughout life for these 2 precious girls!

First Week of First Grade

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

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

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

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

First Day Drama

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

First day of first grade

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

Cafeteria full of first graders

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

Adria waves goodbye with her classmates on Monday

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

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

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

First Grade is Different

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

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

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

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

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

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

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

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

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

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

Daddy and his little man

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

Mermaid Magic

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

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

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

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

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

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

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

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

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

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

VCUG Study and Mermaid Magic

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

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

She liked the Minnie hospital gown she got to wear!

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

Adria got nervous after lying on the X-Ray table

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

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

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

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

The Results

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

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

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

The Practice

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

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

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

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

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

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

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

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.

2014: School, New Home, Travel, Baby and More!

The Christmas letter did not happen this year. One nearly always accompanies our Christmas cards, but they barely made it out in time for the holiday. I was behind on everything!

Most gifts got purchased just the week before Christmas, and most presents were wrapped on Christmas Eve. But it all worked out, and I tried not to stress it.

PRECIOUS CHRISTMAS GIRLS - photo used on our card

Some would call it procrastination. I call it "November was wildly busy, and I was sick the first half of December" plus work has been super busy and there's two little people and a life inside me that require most of my extra energy.

So before the house awakens this morning, I thought I'd take a few minutes to myself and look back over what has been a full, yet refreshingly peaceful year in our home. No major move. No job change. No hospitalizations.

But there were big events! We watched our pre-schooler graduate. We did buy a house again. We traveled some. And I am pregnant!

Here are the highlights from our 2014: 

JANUARY

• Daddy enjoyed the wonderful opportunity to travel to Europe for the first time! He and his sister Leona visited their sister Angela, who guided them on exciting adventures through Spain, Italy and Gibralter.
• Mommy stayed home and shoveled mounds of snow and built a couple snowmen with the girls in what was a very white Delaware winter...which made our first viewing of the movie Frozen even more exciting
• Adria impressed us by displaying her increasing confidence and mobility at a local Fun House!

FEBRUARY

• We went on a Snow-Tubing trip with my company in the Pocono Mountains of PA
• The Sochi Winter Olympic Games opened on my 32nd Birthday, and we became pretty faithful followers of the events.

MARCH

• We rejoiced in Adrian experiencing one full year seizure free!
• I saw a strong start to the spring selling season with my job in new home sales, while our company had a new showcase home under construction that I had helped plan and design.
• We watched Adria succeed in pre-school, yet gain the maturity to ask tough questions like "Why am I Different?"

APRIL

• We returned to visit our home in Virginia for the first time, since our sudden departure in April of the previous year, and renewed the lease with our tenants...they have been a huge blessing!

MAY

• The girls appreciated a special trip to the Please Touch Museum in Philadelphia, and Daddy enjoyed a full day of Disc Golf with a friend at Tyler Park.
• We glowed with pride as Adria walked confidently down the aisle to receive her Pre-school Diploma in her first graduation!

JUNE 

• Adrian and I participated in our first running event together - He agreed to join me since it was more than just a 5K run, it was a muddy obstacle course and we participated with friends to support MS.
• Daddy flew to British Columbia, Canada to help his older brother Jeremy in building the new home they had planned for years!
• Adria starts putting on the pressure to have a Baby Brother!

JULY

• Adria lost her First Tooth, thankfully Daddy was there to help her!
• After looking around at other housing options, we decided to purchase the home we had been renting in Bridgeville and have my company build a Sunroom addition. 

AUGUST

• Johanna is officially potty-trained with very few accidents!
• In one of several full days we spent at A.I. duPont Hospital for Children, Adria was fitted for her first wheelchair AND proved herself to be quite intelligent after 4 hours of psychological testing.
• Mommy's work hosted the Grand Opening of our brand new Idea Home and Design Studio, and we saw nearly 1,000 visitors through our doors that first month!

SEPTEMBER

• Adria started full-day Kindergarten at the local public school and has loved being a student! Johanna also started pre-school two days a week.
• We celebrated Adria's 6th Birthday enjoying beautiful views of the Delaware Bay while staying at a friend's beach house in Broadkill.

OCTOBER

• BIG NEWS: Adrian and I announced that we are expecting another BABY!!! And we heard the heartbeat of this new life for the first time :)
• We adventured in the outdoors with a family camping trip to cabin at nearby Trap Pond State Park.

NOVEMBER (a very busy month!)

• Our little family took a long road trip to Savannah, Georgia, where Mommy completed a 13.1 mile run in the popular Rock-n-Roll Half-Marathon! I ran as part of Team Spina Bifida, raising funds and awareness for the Spina Bifida Association.
• Adria completed her first competitive race the next day, showing impressive determination as she completed the 1/2 mile run (last place was just fine!).
• My husband and I celebrated 11 years of marriage and even managed to get away together for an overnight in Washington, D.C.
• We traveled to New York over Thanksgiving to be with family and say our final goodbyes to my Grandma, whose journey ended after 94 full years.

DECEMBER

• All four of us got hit with a bad winter cold that passed around our family for much of the month. Mommy's cough got so bad, it strained my diaphragm and along with lifting little girls, knocked 3 ribs out of alignment!
• Eventually, we were able to celebrate Johanna's 3rd Birthday with a little Ariel princess party.
• We started Adria on an all-new bowel program that we hope will significantly improve the challenges she faces with this part of her life.
• AND FINALLY...We learned that a healthy BABY BOY is on his way!

As always, it was a very full year for this Seely household. We enjoyed many fun adventures and new experiences. We saw positive improvement with both Daddy and Adria's health challenges, but are still impacted by them every day. We are thankful for the blessings and being at the same address as last year!

Praying you are blessed with a safe and happy NEW YEAR!

When the School Nurse Called my office...

Yesterday my office phone rang and Adria's school nurse was on the other end. Immediately, my heart paused for a second, fearing that something was wrong with my little girl.

On the line was a different nurse than normal, yet I soon realized my instinctive fears were unwarranted. She called because the usual nurse at Adria's elementary school was out sick, and she wondered if I was available to meet her at noon and show her the catheterization routine with Adria.

Thankfully, I did not have any mid-day appointments, but either way I would have made myself available. Over the years, I have learned that not all nurses know how or are able to catheterize children. Plus, it is a very sensitive and personal procedure that I don't want someone I have never met doing.

The nurse on the phone was very sensitive to that and to Adria's comfort level.

Fortunately, Adria is very comfortable with her usual school nurse, and they've developed a great routine for taking care of Adria's unique needs.

Every day after she enjoys her free lunch in the cafeteria, she and her teacher walk down to the nurse's office while the rest of her class heads out to recess.

So yesterday, I went ahead and left work to join her for lunch to make sure I was there in plenty of time to meet with the new nurse (she's actually been with the school district many years, but had not met Adria yet). I was filled with a sense of gratitude that I work just one block away from Adria's school.

How could I ever hope or ask for a better scenario for our family during this year of Adria transitioning into FULL DAY school??? God is good and His plans are always better than ours...even if the pathway is often rocky.

It's actually really fun to join Adria for lunch. This was my third time going and now Adria's not the only one excited and surprised to see me...her classmates are as well :)  The teachers don't eat with them in the cafeteria, but there are about half a dozen lunch monitors milling about.

When lunch was over, Adria led the way down the hall to the nurse's office. The nurse was still on her way coming from the other school, so Adria got a bit impatient waiting 5 minutes.

Once she arrived, we exchanged introductions and then she asked Adria how Nurse Dawn did things. Adria eagerly showed us her routine.

This is the bed/cot where Adria goes for her routine and the privacy curtain on the left.
Johanna wanted to try it out one day (not yesterday)

• She walked over to the bed/cot next to the wall and pulled the sanitary white paper roll over it (like at the doctor's office).
• She led us into the bathroom and pointed to a shelf that held a basket filled with her supplies: Catheter kits, diapers, and wet wipes
• She yanked on the edge of a large white privacy curtain hanging from the ceiling and pulled it out so that it concealed the bed
• She struggled to climb onto the bed because she kept slipping on the white paper, but mommy gave her a boost.
• She pulled her bottoms down and then Mommy took over, demonstrating to the nurse how we catheterize
• Put on gloves. Wipe private area. Open catheter and attach urine collection bag. Insert into urethra. Wait about 5 minutes until urine flow stops. Remove catheter and trash everything. It's not so bad really. We are used to it.
• After that, Adria told us we forgot to give her the cup of water she always gets when coming to the nurse. Oops! So she got her cup of water (hydration is so important for her to avoid UTIs)
• The nurse also gives Adria medicine every day to help with her bowel routine, but we struggled to find where it was among the menagerie of prescription bottles, inhalers and other medical devices for children. This nurse has her hands full!
• Finally, she got her medicine and we left the nurses office.

Since the "routine" took longer than normal, I knew Adria wouldn't have much time for recess. I put her into the little wheelchair that sits unused in the hallway and quickly wheeled her through the halls to the door for the playground. She loved the ride, but even so, we were too late. The children were already lining up to come in.

Adria was momentarily distraught that she had missed recess, but her teacher cleverly reminded her that she would have fun in gym class later...and Mommy took her for an extra little fun spin down the hall in the wheelchair. 

All is good. Our daughter's life is full of daily challenges and inconveniences, but you would never know it by her attitude. She's one happy little gal.

Even as I left to return to work, the mother of a boy in her class stopped me and told me how her son talks about Adria. He said she is so pretty and nice since she's always laughing! Too cute. But...I do have slight cause for concern, this is the same boy that just a few days ago Adria told me was her favorite boy and that she "loved" him. Really? Am I already having to worry about little boyfriends??!!! Um, so not ready for these conversations.

Hmm, which will be more challenging over the next few years... teaching her to catheterize herself? or teaching her how to properly respond to and treat boys?

Life happens and they grow up whether we are ready or not!

So, the nurse's call was no tragedy, but it led to a little adventure nonetheless.

Our cute Adria in her school uniform for picture day last week.

OCTOBER IS SPINA BIFIDA AWARENESS MONTH - EMBRACE, EDUCATE, EMPOWER

Blessings visible with a day at the Childrens Hospital

Today I was reminded again how blessed we are with our little Adria and how different life could be.

We packed up the girls early and were on the road by 8 a.m. to get to A.I. DuPont Hospital for Children by 9:30 a.m. It was time for Adria's bi-annual visit with various doctors in the "Spinal Dysfunction Clinic." Because spina bifida impacts so many different areas of the body, the hospital coordinates times when the various specialist come together in one area to see their patients with similar challenges. It works well but it means that we sit in room for a couple hours and typically see at least seven doctors, physician's assistants, physical therapists, nurses, etc.

As we sat in the Rainbow module waiting area before her appointments, I saw a young man in a wheelchair and his father. He had large shoulders and a thicker mid-section with short, lifeless legs hidden under baggy pants yet he was aware and cognitive, all tell-tale signs of spina bifida.

I said hello and introduced myself asking his name and what grade he was in. Ninth grade...he just started high school. That's a rough time for anyone, but I couldn't help but think how much more difficult it is for this young man. I almost felt guilty saying that my daughter has spina bifida too, as she went stomping past to go look at the train set.

His father asked what level she had, meaning where was it located on her spine. I said the L-4/L-5 area. He seemed surprised saying that was the same as his son's spina bifida level. He asked, "It wasn't myelomeningocele was it?" There's a question I almost never hear.

"Yes, she was born with myelomeningocele with her spinal cord and a sac protruding from her back," I replied. Truly, I think he was almost in shock. He said it's amazing how different she can be with the same level of spina bifida. Yes it is, I thought.

We chatted for a few more minutes about things like catheterizing, bowel management, shunts, and surgeries. All things we understand and experience yet very rarely have the opportunity to talk with other people who know exactly what we mean. And then Adria was called back.

Adria did great. It's wonderful that she can now stand barefoot (with mom's help) for her height to be measured. She's 3' 2" tall and almost 42 lbs. That's pretty short for her age, but you'd never know without other kids around.

She showed off fairly well for the doctors, and they were pleased with her progress saying she looks great. The best thing we had to share was that the bowel program we have in place now seems to be working to keep Adria's diapers clean most of the time. This was a big concern of ours during our last appointment with the clinic in May. Yeah for progress! But they were quick to warn that this is ever changing with their spina bifida kids, so be prepared...

They also asked how easily Adria tires when walking. She can go fairly far, about 1/4 mile, but definitely couldn't make it through a walk at the mall.  They suggested we might start thinking about getting her fitted for a wheelchair at her next visit...it can take 6-8 months for one to come in after ordering. This discussion was minorly alarming to me because I've been so pleased with Adria's progress, I just didn't think we'd be talking about a wheelchair. The doctor assured me that many of the childrens' wheelchairs collect dust and are only on-hand for major outings like a trip to Disney World, once they've outgrown a stroller. We'll see I guess. I'm in no rush for this. We still have a jogging stroller and a double stroller that work just fine when needed.

But as I pondered the possibility of a stroller, I thought about that young man I met earlier. For him there was never any question, he would need a wheelchair. He has almost no feeling in his legs. He has the same "birth defect" at the same level as my daughter. He is a special boy and I hope and pray the best for him.

I just realized how very blessed Adria is. She is a little miracle. She is amazing.

Adria helping to put on her braces

Johanna being like big sissy and taking her shoes off...

The new hospital addition is coming along nicely! Can't wait to see it.

Our special routine, the same every night

As a mother who works full-time, the evenings with my girls are extra special.
That's when we color, bake, paint our finger nails, play pretend, take a walk, or grocery shop.

And now, I get more time with them than I ever have. For the past 6 years, I have worked out of a model home from 10 a.m. to 6 p.m. on most days. Though these are not bad hours, I worked most weekends and depending on where the new home community was located, I did not get home until close to 7 p.m. That did not leave much evening time with the girls, but I still tried to make the most of it.

Since I started my new job three months ago, I now work a glorious 9 to 5 shift plus later for some appointments. Yes, I still work many weekends, but it's great to be home by 5:15 p.m. since I live VERY close to my current model home.

I am able to make dinner more often, instead of take-out (good thing, since there aren't many options around here!) and have appreciated the extra time with my family.

Tonight, the girls and I watched a cartoon together and danced during the final credits music, as has become our after-movie tradition!

After playtime, we begin our hour-long nightly routine. It goes something like this:

• Remove Adria's shoes, leg braces, and socks.
• Catheterize Adria and flush out bladder. Insert mini Enemeez.
• Sit Adria on potty for about 20 min. She usually plays games on my iPhone to occupy.
• Wash up Johanna (bath time every other night), change diaper and put on her pajamas.
• Make Jo an 8 oz. bottle of milk and put her in Daddy's lap with her favorite fuzzy green blanket.
• Give Adria her two evening meds - 1/2 tsp of Oxybutanin (bladder relaxant) and 1 tsp of Sulfamethoxazole (antibiotic to help prevent UTIs).
• Put on Adria's diaper, wash face and brush teeth then put on the PJs.
• Lie Adria in her bed, Johanna joins us but spends most the time crawling all over, in and out of the bed and stepping on sister's hair.
• Say the Lord's Prayer with Daddy.
• Read Adria a story, usually from the Highlight's High Five magazine, which arrive monthly. Thanks Grandma!
• Sing a lullaby. Most nights she asks for her favorite "Hush Little Baby." Mommy is tired of singing it over and over, but she loves it.
• Kisses to Adria. Lights out. But it's not over yet.
• Bring Johanna in her room and sit together in rocking chair, while lullabies play in the background.
• Read her one or two toddler books.
• Lights out. Rock a few minutes more. Enjoy the sweet smell of her hair or try to contain her if she's in wiggly mode.
• Kisses to Johanna and into the crib she goes. Night, night. She's just started responding with her own "night-night, ma". So cute!
• Crash on couch after some minor tidying and relax with my man.

Most nights I love this routine, some nights it seems to go on forever. But it works for us and gives me precious quality time with each of my loves.

Here's a video of Adria and I singing her favorite lullaby.
http://www.youtube.com/watch?v=7F89SW-H9G8