Hope Flickers, yet Fear Lingers

We are living in the days when hope flickers, yet fear lingers.

Hope that the seizures will not return. Hope that the meds are working properly this time. Hope that prayers are answered and it's over. Hope that my husband can drive again. Hope that life can continue uninterrupted by a major "event."

Yet fear is ever present in this time. Fear that hope will be crushed as it has been for the past 3 1/2 years. Each time we dared to hope that the months without my husband having a grand mal seizure meant that this crazy nightmare had ended, fear returned.

It has been almost six months since Daddy's last seizure. Many times he has gone this long without one, and we sincerely believed the drama was over. We hoped for that every time.

But, always without warning, he would fall and surprise, shock and frighten any around him. Sometimes at home. Other times at Starbucks, a car dealership and even the airport.

This hope was alive and well early this year when I was fairly adjusted to our new home in a pleasant Richmond, Va. suburb, and Ade was enjoying life. He was happier than I had seen him in years. Chesterfield proved to be a place he embraced more than anywhere else we've lived in our 8 moves over the last 10 years.

He had developed a great routine as a stay-at-home Dad, regularly working with Adria on learning to write letters and numbers, beginning potty training with Johanna, and even cooking dinner many nights.  We had not made many friends yet, but we lived in a lovely golf course community with great neighbors and were looking forward to meeting more at the community pool this summer.

Life was good. My job was not perfect, but I was selling well, had a great manager and saw opportunities on the horizon. Things felt on track, almost better than ever since my husband and I have been together.

So, why did it have to be taken away? I sometimes see reasons and answers, but it still hurts.

Hope was crushed on a beautiful March morning when the buried fear became reality once again. That's when Daddy had the worst seizure yet. Without any warning it happened. And there we were sitting in another Emergency Department crying and saying, why again, what now?

I have hesitated to share too much about the severity of his seizures, because the last thing I want to happen is for people to fear him and avoid him. They only happen a few times a year, but when they do, it can be debilitating.

This one was. It stripped away everything Ade had worked so hard to do. And he was left broken and empty. Mental and physical pain stayed with him for weeks and even months. We could not fight it alone any longer.

So we returned to our families in Delaware. It will take another blog for that amazing story, but we are here now. After this fall, we needed familiar faces and the support of loved ones to get back up again.

My husband is feeling well again and appreciating the opportunity to pursue his favorite sport - disc golf - with a few friends.

Last week, my sister and her family were in town, and we enjoyed outings to the beach, a Shorebirds baseball game, and a cook-out in our backyard. We had fun and Ade was there beside me every time.

Again, hope flickers. Yet fear lingers as we draw close to six months since the last seizure. For whatever reason, many have been about six months apart.

My husband recently said, "Waiting for a seizure is like holding your breath. The longer you do it, the harder it gets."

It would be great to just move on. But right now, we have to hold our breath. Our daughter's 5th birthday is coming up. Last year, Daddy had a seizure the morning of her birthday. I pray, pray, pray that does not happen again!

Hope, please become a flame.


Here we are, a happy couple on the beach and with my entire immediate family.

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

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.

A full and fun Saturday

What a welcome Saturday off! I have worked the last two weekends and my only day off in the last 10 days involved a trip to the children's hospital, which is a 3-hour round trip drive. 

 

Needless to say, Hubby and I were both more than ready for a break. And we did have a full and fun day.
 

I wanted to give him some time away from his "Daddy job" and to spend time together. We brought the girls to stay with their Aunt while we spent the morning at Trap Pond State Park playing disc golf. Also known as frisbee golf, this is Daddy's favorite hobby and he's gotten very good at it. I am not, but that's ok, I AM a huge fan of walking through the woods together. It's a win-win date :)
 

In the afternoon, we brought a surprise for the girls! It just so happens that a couple I recently sold a home to had an old swing set right where the new home is to be built. I kindly offered our services to "remove" the set. With Grandad's help, we got a swing set for free and the couple got a cleared yard. Another win-win! 

I'm so thankful to have family around to help, both in tough times and in fun times. The girls are thrilled with the play set. Daddy will have to make a few adjustments to the steps for the girls to be able to climb up to the slide, but other than that, it's great for a 16 year old set.

After finishing the day with a trip to Wal-mart and some cleaning, I'm enjoying solitude with Pandora playing, freshly painted hot pink nails drying, and of course, writing.

Days like these we want to remember.

 

It's a Stinky Situation. Literally.

We drove up to A.I. DuPont Children's Hospital in Wilmington, Del. on Tuesday, which was the third time since May. Typically, we only go for check-ups with the spina bifida clinic every six months, but we are in the midst of trying to figure out how to fix a stinky situation.

Adria will be five years old in a month (hmm, need to work on party planning). She is still in diapers. This is not because we are lazy, but because her nerves in the spinal cord that control bowel and bladder function never formed properly. Therefore, she has very little control over going potty.

Maybe you don't care to read about poopy diapers, but this is our greatest struggle with her right now. We have made it through many hurdles - head surgery, learning to crawl, taking steps with a walker, walking unassisted, and starting a daily catheterization program. This is our next hurdle - keeping her diaper clean. As she is now preparing to attend pre-school everyday, we want to do all we can to avoid her having stinky diapers around other children.

The doctors said we still have some time. It's usually around age 7 when other children notice and tease about the smell. She is such a sweetie with a gentle spirit, I can't stand the thought of her being teased for that.

So, I have been trying to keep a Bowel Log. It's really not so fun to document what she eats, drinks, when her meds are given, and of course when she poops. How much is it? How soft is it? What's the consistency? Definitely not a favorite past-time.

We talked about our progress and what we tracked with the doctor. There is no quick and easy way to make a spina bifida child's bowel empty properly. Constipation is an on-going challenge with these children. It takes time to figure out what works best for each family, but it usually involves a three-step process.

1. Soften - a medicine to help soften the stool. Adria takes about a teaspoon of powder Miralax every morning with her milk.
2. Stimulate - an oral medicine to help get the bowel moving. Adria has a 1/2 teaspoon of Senna Syrup at lunch time.
3. Evacuate - something to help get the stool out. This is the unpleasant part...I insert gel into her rectum every night. It's called Mini Enemeez, which is like an enema, and then she sits on the potty for about 20 minutes.

This is the only time a day when she sits on the potty. She actually enjoys "potty time" because she gets to play games on mommy's iPhone.

We think that we are getting closer to a consistent program, but the same "formula" does not work exactly every day since her diet can have a huge impact on everything. We all know how foods can affect us differently.

In addition to advising us on the topic, a couple other good things came out of Tuesday's appointments. They gave us a prescription for diapers! I still need to get them ordered, but now that regular diapers are getting too small, we can get these. I hope our insurance covers this, that would be great.

The doctor also vowed to haggle with our insurance over the mini Enemeez. For some bizarre reason, they are considered an over-the-counter medication, and our insurance will not cover them at all. I hope she can make some headway, so we can have that $74/month back.

For now, we are going to stick with the three-step plan above and hope to regulate this stinky situation as much as we can and prevent embarrassment for Adria. I hope you don't mind this topic too much, but it's been helpful for us to read other blogs about this to help determine our options for no more stinky diapers!

Below are some photos taken of Adria at A.I. DuPont Hospital on Tuesday. Look at the huge addition they are working on right now, to be open sometime next year!

Adjusting to our daughter's official diagnosis

Follow-up to July 30 post "The Worst Question I have ever been asked."

May 6, 2008 was a long and emotionally exhausting day. We had just spent the morning at the maternal fetal medicine specialist in Annapolis learning about spina bifida, getting asked that horrible question, and seeing first-hand 3D ultrasound images that showed our baby had an abnormal protrusion from her lower back.

After the ultrasound, the doctor shared the positive news that our baby's heart looked good, her arms and legs were very active, and her hands and feet were open and moving around, which is good because often spina bifida can cause clubfoot. He confirmed the diagnosis, that she has spina bifida (myelomeningocele) with an exposed opening in her back which usually does result in some level of paralysis, loss of bladder control, and excess water on the brain. However, the lesion is low on her back and is not likely to cause extreme paralysis.

With the official diagnosis on my heart and mind, I found myself curled up into an almost fetal position in the backseat of the car as we traveled home. I did not have the strength to talk about it just then, it needed time to sink in that my baby would likely be handicap to some extent.

I was so thankful that Doris, our pastor's wife, had come with us to offer comfort and prayer support as well as a clear head for driving home. My husband and I felt drained.

We stopped at a grocery store along the way to pick up a few things and get some lunch. But I had no appetite, I wandered in a haze and feeling incapable of making even a small decision, like what I wanted to drink.

Then I saw a sweet, young girl standing in a check-out line with her mother. She looked at me, and I could not help but wonder - will my daughter ever be able to stand or walk? I nearly lost it right then.

In just a day's time, our world entered an all new dimension to us and our priorities suddenly shifted. I was employed as a sales representative, and I had skipped our company's annual meeting and awards ceremony that day to meet with the specialist. Later, I learned that they had given me the new home sales Rookie of the Year award for our division that day. A special honor, but it did not carry the significance that it normally would have. I had gotten much bigger news that day.

I would continue to work and sell homes, but I knew that giving our baby the best life would require much of us, and that was okay.

That evening I penned these words in my journal:

"I am not sad or disappointed, I love the little one in me more than ever. I think we both just feel overwhelmed with the unexpectedness of it. But I just hold to the knowledge that God knit her together in my womb and has a purpose and plan for her life. I just pray that she will be able to have a happy and fulfilling life no matter what."

Our prayers are being answered every day. At 4 years old, she now walks around like a champ and has no obvious handicap! This is actually very rare for a child with her diagnosis.

Below are some photos of Adria's baby book pages that talk about that day and show 3D ultrasound images. By the way, I don't scrapbook often, but her precious story gave me motivation to do this while I was on maternity leave with her.

 

 

Our friend's miracle Baby Boy born last Sunday, 9 weeks early

As I have recently been reflecting on our personal life-changing events with Adria just over 5 years ago, I think of our dear friends Brad and Amanda, who this very week are going through a dramatic baby event of their own.

Last Sunday, in the wee hours of the morning, an incredibly strong mama had to undergo an emergency C-section to deliver her baby boy at only 31 weeks into the pregnancy. Her high blood pressure had caused some concern the previous week so she was in the hospital on bed-rest, but it was a shock when the doctors told her there was no time and they had to deliver the baby immediately - 9 weeks early!

Because it was a surprise in the middle of the night, she did not have a family member by her side during this ordeal until the surgery was almost over. However, she was not alone as she lay there on the table praying her baby would be all right. God comforted her as she quietly sang a praise song behind the oxygen mask. Then she heard a small cry and the doctors brought him up to mommy for a quick kiss. Tiny Baby Preston was born healthy, weighing just under 3 lbs. and 15.5 in. long.

A week later, he is still the smallest of the babies in the hospital NICU, now at 2 lbs. 9 oz, but he is doing well and breathing on his own. He will likely need to stay there for 4 to 5 weeks to gain weight and strength, but his parents gladly drive an hour to see him and hold him for a while every day. The whole community is praying for this special family, who have met their firstborn much earlier than expected. He is a miracle.

His parents had tried to have a baby for years, but had met with disappointment and heartache. Then Brad and Amanda signed up to be foster parents two years ago and were soon given a newborn baby girl to care for with very little notice. Ali was born the day after our Johanna, and the two girls are now little buddies. Yes, Preston has a big sister who was able to be adopted by this amazing couple in her own series of miraculous events. It seems the joy of "official" parenthood opened up the womb, because Amanda became pregnant not long after the adoption.

Though the baby shower was still being planned, and the nursery still needed decorations for a boy, Baby Preston did not want to wait any longer to enter the world! It's been a whirlwind week for this family, but their joy is evident as they appreciate the precious few minutes they get to cuddle him in the NICU every day and anxiously await the day he can come home.

The path they are on is unexpected and the road ahead unknown, but with their love and all the prayers, I know this little guy is going to be a power house! His story has already blessed so many.

HAPPY 1 WEEK BIRTHDAY BABY PRESTON!


Amanda and Brad with their precious baby boy, born last Sunday nine weeks pre-mature.

A Year can hold so much

Adria just got out of bed and walked in to be with me. I still love seeing that. She's only started getting out of bed on her own in the past year, so it's still special to me.

That's one of the sweet things that happened in this overly jammed packed year for us. I was thinking about it last night after joining church friends for a time of prayer, which was so special because it's been years since I have done that. Afterward, I sat there and talked with friends I've known since my childhood and appreciated this simple interaction that I missed while away.

A year ago today, I was going to work in Richmond, Va. for the first time. We had just made the major move from Indianapolis, Ind. that week and were excited about this new phase. We had no idea what was to come...

I would never have believed it, even if an angel had appeared to me last spring (2012) and told me that in the coming year my family would experience a dynamic time that included:

• Making two major moves, involving three different states
• Changing jobs after almost 6 years with a successful company
• Buying our Virginia home, selling our Indiana home, renting out our Virginia home, and leasing a new home in Delaware
• Watching my husband endure two of the worst seizures he's ever had, one on our daughter's 4th birthday
• Going through a time of depression unlike any I had experienced
• Telling over 100 people that their credit score was below 600 and no, they could not by a home now
• Traveling free of charge to Nassau, Bahamas for a tropical vacation with husband
• Experiencing both my daughters learning to walk barefoot for the first time
• Trying desperately to find a way to help our daughter not have stinky diapers at pre-school age
• Having hopes, plans and dreams sift from under our feet like the sands along the shore
• Enjoying the privilege of having family and friends close by once again

Oh, it has been a year that feels like an exceptionally adventurous roller coaster ride of crazy ups and downs. One of those years where I am thankful I did not know what was to come. I can mostly handle these adventures one day at a time, but it would be overwhelming to try to plan for all this.

So here we are, back in Delaware after three years away, having no idea what the future will hold for us but just taking one day, one step at a time.