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.

A FULL Day at the Children's Hospital

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

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

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

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

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

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

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

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

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

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

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

• 

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

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

• 

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

• 

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

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

• 

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

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

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

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

Imagine if...an Angel appeared 15 Years Ago

Imagine this...

It's the morning of June 3, 1999 and I'm trying to put together a valedictorian speech to deliver at my high school graduation later that day. I lost my original speech during our class trip, so I'm trying to think of something intelligent and inspiring to share.

Suddenly an Angel appears. I am in awe. She sees my dilemma and offers assistance.

"Would it help provide inspiration if I gave you a glimpse into your life 15 years from now?" the Angel asks.

"Wow, YES! At least I think so," I eagerly respond.

"You must be sure, for I will reveal a great deal of things," the Angel adds.

"Go ahead, tell me," is the reply of this naive and blindly optimistic 17 year old.

The Angel proceeds...
"In 15 years you will have been married 10 years to a handsome man who has been a faithful and loving husband.
Together you have two beautiful daughters, who are your greatest joys.
You have lived in 3 new homes, and you now live on a large wooded lot in the country.
You earned two college degrees, graduating with honors.
You have a successful career in sales and marketing.
You have provided more than 100 families with new homes.
You finished a marathon run.
Your husband and you became youth leaders and part of the church leadership.

You visited more than a dozen countries, walking on ancient roads and pristine beaches.

You have friends and family all around you.

You are strong, healthy and well."

The Angel pauses. I'm amazed and smiling.

"Really? Thank you! What did I do to deserve such a blessed life?!" I ask her.

"There is more," the Angel continues...

"On this day in 15 years you will spend seven hours sitting in a children's hospital.
Your oldest daughter was born with spina bifida, and she requires doctors to assist you in her lifelong challenges with mobility, incontinence, and more.
Your husband has endured life-altering seizures for more than three years. He loses strength in his body and many memories fade away as a result of this trauma.
You have wiped pools of blood off your kitchen floor, more than once.

You are solely responsible for providing your family's financial needs.

You do this by working most weekends.
You have moved more than a dozen times.
You have made choices that cause permanent wounds to those you love most.
You have cried alone countless nights.
You have watched friends lose parents, husbands and babies.
You carried a child that you never met.
You underwent emergency surgery on your 29th birthday.
You faced a time of deep depression after your second daughter's birth.
You stopped regularly attending church and almost stopped praying for a time.
You have been so afraid or hurt that you have lost consciousness several times.

You often feel empty and lost as you watch your life fly by in a blur of joys and sorrows.

You almost lost everything, yet you still have so much.

That is what is to come in your life, Julleanna. Does that help you at all?" she concludes.

Suddenly, I feel sick to my stomach. The beautiful vision of my life has been tainted with surprising realities. It's too much to take in. Too much to conceive all these things at once. Why is there so much struggle mixed with so much good? How can I put this into words? What can I say to help prepare my classmates, to help prepare myself for what life will bring? The words never come for I am too young and not prepared to know my life.

_______________________________________________________________________________

Though the angel is an imagination and clearly never appeared, the events of my life are true and real. On days when I focus on the positive, I am full of joy and hope for our future and our life as a family. But I admit that there are too many days when I question my decisions, question why my husband and daughter face major health issues, and question if I am on the right path for my life. It's a struggle. My dear husband endures this more patiently than I deserve, yet he challenges me to not dwell on these questions and emotions.

For this is Life. It is good. It is bad. It is happy. It is sad. It is exciting. It is boring. It is delightful. It is stressful. It is unexpected. It is perplexing. It is wonderful. It is terrible. It is what you make it. It is what comes your way. And it is full of as much love as you are willing to give and receive.

Maybe that is what I would have said 15 years ago on that graduation stage had I known what is to come. But thank God, an angel did not appear to foretell the future for we are rarely capable of comprehending it at once. Instead, He gives us a new sunrise every morning. Life comes one minute, one hour, one day at a time. And it is in the present day we must Live. Not dwelling on our yesterdays. Not dreaming for or dreading our tomorrows. This is something I must learn to do.

Look at the last 15 years of your life. The events may be vastly different than mine but there is likely a roller coaster of unexpected ups and downs. I hope that you can find the good and focus on the blessings and find strength of character through the struggles.

This morning, my good is seeing these little sweeties sprawled across their bed :)

  

Dirty, Dirty, Dirty Fun for MS

Today we Mucked MS!

Adrian and I joined a team to run through a course of muddy, nasty but thoroughly entertaining obstacles at Philadelphia's MuckFest 2014. The event raises awareness and support for people living with Multiple Sclerosis, a disease of the central nervous system that can lie dormant for a while and then suddenly impact individuals of all ages.

Our team ran as "Cheryl's Crew," in support of my friend Amanda's mom, who was fairly recently diagnosed with MS.

Most of Team Cheryl's Crew with Cheryl smiling in the middle in her turquoise shirt. She cheered us on!

In addition to Cheryl, I know of at least three other people who struggle with the effects of MS.

• The husband of a girl in my high school graduating class
• A great girl I met in college
• One of my brother's best friends

Each of these three people are within a few years of my age and are daily battling challenges from this illness that we may know nothing about. 

As our team lined up at 11:00 a.m. to start our race, the event director reminded us that when we come to a muddy obstacle and think...How am I going to get through that? That's often how people with MS feel when a new obstacle arises from this disease. I have to admit, I'm sure we had much more fun tackling the obstacles we faced today.

The 9:30 heat getting muddy before the race even started!

Today's MuckFest was the first official "bib" race for everyone in this picture except me.

They did fantastic!

Two couples having fun - Brad and Amanda are awesome!

Team Cheryl's Crew 

Getting ready for the start of the race

And we're off! (The next photo was taken over an hour later...)

Amanda hangs on tight to the Swinging Rope and prepares for dismount.

Nothing quite like swinging yourself into a giant mud pit!

Brad and Amanda crawling out of the mud pit. Dirty, mucky mess!

"You got this babe," at least that's what I imagine Brad said.

Look at that strong man...and the drowned rat in the background ;)

Get me out of this muck!

And now that we "rinsed off" in the mud pit, let's get slimy muddy again!

So close, only the Belly Crawl stands in the way between us and the finish.

Muddy but still standing and having a great time.

Amanda and her Dad emerge from the Belly Crawl

Al...most....there...

  

WE FINISHED AS A TEAM!!!

It took about 1.5 hours for us to complete the MuckFest run.

Keep in mind we did have to wait our turn at many of the obstacles ;)

Proud MuckFest Finishers

Amanda and her Dad happy to support a woman they love.

And what's getting dirty without a little smooch at the end ;) 

It was so great to have my husband join me for the first time in a running event.

These showers at the end at least helped us remove major clumps of mud...

Post race picnic and party.

So that's why about 7,000 people participated in this mucky race this weekend (including another group of my Delaware friends on Saturday.) We ran for MS and we ran for Fun! Adults like an excuse to get dirty and play on playgrounds too you know. Even if they do make us fall down and get back up again. I totally did faceplant at the bottom of the Cargo Net crossover. 

We may have gotten dirty, dirty, dirty but we had a great time doing it and helping others!

Her First Graduation!

Adria walked down the aisle in cap and gown for the first time on Friday. And then walked across the stage to receive her first diploma. I'd like her to get used to this :)

It was adorable. These 24 little preschoolers in blue caps and gowns-The Woodbridge Raiders Preschool graduating Class of 2014! And high school graduating class of 2027...

As Adria confidently made her way to the front with no tripping and just a big smile on her face. I was so proud of her. And right behind her was one of her best friends, Katie. The teachers and phyiscal therapist have told me that these two girls are so close, maybe it has something to do with the fact that they are the 2 shortest kids in the class but I think it's much more than that.

They are kindred spirits, understanding that they share some challenges other kids don't.

Adria is holding hands with her good friend Katie on Field Day (just a few days before graduation).

Katie is a triplet and the tall girl beside her is one of the three.

But Adria has lots of friends. There are some wonderful children in her class that she's gotten to know this year, and I know she'll miss them over the summer. 

Her preschool really is special. The program is provided by our local public school specifically to help developmentally changed children get ready for kindergarten. I think about half of her class was children who had speech, behavioral, physical or social delays. These were the kids who rode the bus to school. The other half were "normally developing" children whose parents brought them.

With three incredible teachers, this learning environment seemed to work great for all the children. And on graduation day it was beautiful to see the progress many of the children had made since the start of the year! Adria's greatest physical improvement is her ability to now take a few steps up and down stairs without holding onto a rail. It's rather impressive.

Adria was excited about graduating, but when we told her it meant that school was almost over, she nearly cried. She's looking forward to kindergarten already.

Here she is walking down the aisle!

Little Pre-school graduates

The kids performed 3 songs and dances for we proud parents. Cute!

Waiting patiently for her name to be called and receive her "diploma."

Paper outlines of the children were taped to the wall with notes.

Her's said "Adria's favorite part of preschool was the art interest (area).

When she grows up she wants to be a mom."

She loves her Grandma Outten.

She was so thrilled to see Grandma and Grandpa there for her "show".

And equally excited that her Granny Seely was at the graduation.

Mommy and her little graduate

So excited and proud! You go girl!

Little sister was excited for Big Sissy too! Sisterly love

School friends showcasing their accomplishment.

Our family

Our fuzzy but precious family ;)

The graduation was only 30 minutes of fanfare and we did not throw a big party afterward, but there was something very special about seeing our little girl walk down that aisle by herself and completely confident. That little baby I cried over and prayed for as I carried her inside of me and wondered what her life would be like with spina bifida...that little baby just graduated from pre-school and is growing into a strong and very capable little lady. I love this girl! And I look forward to watching where life leads her.

Congratulations Adria Mychelle Seely!