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.

The Beauty of Life...IN HIS WORDS

Today, we have a special post as my husband shares for the first time in months. As always, he makes me ponder and get a little teary-eyed as I read his unique perspective. I hope you can appreciate what Adrian has to say, especially as today marks 3 weeks since his recent seizure.

The Beauty of Life...IN HIS WORDS

I recently read that one of the few certainties of life is that…………. none of us are going to survive it. Does that sound morbid? Possibly, but it is also very very true. Personally, I am finding that having this truth made clear in my life on a daily basis is having a positive and liberating effect. Life is full of beauty, of joy, of vigor, of the sense of the miraculous and well……..just life itself. 

But so often the beauty of life becomes overshadowed and blocked out by the things that don’t matter and we don’t take time enjoy it. We spend so much time drug up, drug down, drug out, or just plain drugged that we miss so much of the beauty in life that surrounds us. Realizing that your life can be taken in a moment is very inspiring to focus on the beauty in life, the precious moments in life.

The daily reality that we have had to learn to live with is that a seizure and everything that comes with it can strike at any time, anywhere, and with no warning. What has been harder to come to grips with is the reality that at any time a seizure can hit and I won’t wake up in the E.R. I can be cutting grass or folding laundry and the next thing I know I will be asking St. Peter why now? How does a person come to grips with this in their heart and mind? How can it make any sense?

It doesn’t make sense and it can’t. Every day I have the choice to live in fear and self-pity, or I can spend living in and looking for the beauty of life. I have the choice to be negative or positive, build or destroy, be selfish or self-less. There are aspects of my life that I cannot control but these things I can. These are the choices that we all have to make on a daily basis and I hope that you don’t have to share my path before you learn to stop and smell the roses.

Will a seizure take my life? It is possible although not probable. It could be tonight, tomorrow, next week, next year, or never. I guess the uncertain possibility adds to the spice of life. However, this same possibility applies to everyone. Our lives hang but by a thread yet death is not something to be feared. 

I do not fear death, I do fear a wasted life. 

That is how I have come to grips with my condition, it is how I make sense of what is happening. I live my life one breath at a time and I focus each breath towards living a life that is not wasted.

One of my favorite poems is called How Did You Die by Edmond Vance Cooke.  Although the title may sound a little morbid I find the poem to be oddly inspirational. You should be able to follow the link on the title of the poem, but here are a few of my favorite lines.

          

You are beaten to earth? Well, well, what's that? 

Come up with a smiling face.

It's nothing against you to fall down flat,

But to lie there -- that's disgrace.

Adrian cherishing time with our son today while we waited
for our daughter Adria's appointment at A.I.duPont Hospital for Children.

                        

Maternity Leave is Over

It was wonderful. So very wonderful.

I said it a hundred times, and I'll say it again. Judah was born at the perfect time to give his Mama about the best maternity leave she could have hoped for. And, he's been more healthy and content than I could have ever dreamed.

Thank you, God. Thank you, Judah. 

You gave me something I haven't had since I married Adrian (cough...almost 12 years ago!) - Ten glorious weeks of NO working and fun, freedom and family time.

Yes, I have been on maternity leave twice before with my daughters. But, as I have mentioned, they were both special yet very stressful times. Adria was born with myelomeningocele spina bifida and required major back surgery at a day old followed by a two week stay in the NICU and numerous follow-up doctor visits. Johanna was born in the cold winter while we lived in Indianapolis, 600 miles from the support of our families, and Adrian had 3 major seizures while I was on leave so he barely even remembers Jo-Jo as a newborn.

Even though Adrian did have a very unexpected seizure, exactly two weeks ago, I did not let that steal the beauty of what I've experienced these last two months.

Our Adventures

Since Judah was just a few days old, I have had him out and about joining me for many adventures and events, including:

• Adria's Sunday afternoon soccer games in May
• Johanna's Pre-K field trip to the Salisbury Zoo
• Adria's Field Trips to Cape Henlopen State Park and Funland in Rehoboth
• Strawberry Festival at Fifer Orchards
• Mom's night out dinner at the Cultured Pearl
• Kindergarten Field Day for Adria
• End of the Year school programs for both the Girls
• Beach Day with 3 other young families
• Date night with Daddy to Passwater's Restaurant at Heritage Shores
• My cousin Shannon's high school graduation and party
• Cabin camping trip to the Shenandoah Valley in Virginia
• The wedding reception for my second cousin
• A funeral for the grandmother of some dear friends
• Church and small group gatherings
• Moving party, birthday party, library luau party
• Plus, many outings to local parks and my aunt's pool

Mommies and our babies out and about at a party.
Baby Ethan on left was about 4 months, Judah was 2 months, and the Baby on right was just 3 days old!

As you can see, we did not really sit at home and relax for 10 weeks. I took advantage of the time to do many of these activities I would have otherwise missed had I been working. And Judah was with me everywhere I went. Either in my ErgoBaby carrier, the stroller, the wagon, in my arms or someone else's...he was my adorable sidekick.

Sometimes I had to get creative or uncomfortable finding a place to nurse the little man. And sometimes he got mad about being in the car seat again. But overall, we had a great time adventuring together!

I actually did stay home some days. But I quickly learned that it's exceptionally difficult to keep a house in some semblance of cleanliness when you have three children at home. And we are a unique couple because Adrian is definitely better at keeping house than I am. That said, I did much more cleaning than I do when I'm working full-time, while Adrian took advantage of his "free time" to complete many projects outside the house.  

Maternity leave was wonderful. But it is over. Far too soon.

With my babies just before I left for work yesterday.

Yesterday was my first day back to work. Of course I shed a few tears the night before as I put Judah to bed, knowing that he and I would be apart longer than we had ever been before. And, Adria cried on my shoulder in the morning while Johanna asked how long I would be gone. It was so sad to leave my babies. Okay, I'm sitting here sobbing now.

Thankfully, I have a great job that I do enjoy (most days) and leaving is made easier knowing that the children are left in the care of family who love them. Adrian's mom came over to help him for the day.

My Job

In case you are wondering, I work as a New Home Sales Specialist and Marketing Manager for a custom home builder. Next month marks eight years since I first started in this career with national builder Ryan Homes, and I've been with my current employer for two years now. It's been a remarkably wild and fluctuating housing market since 2007, but business has been especially good this past year as I've watched the market greatly improve.

My first order of business after following up with all of my clients is to complete the project I started earlier this year...rolling out a new website!

Probably the funniest moment of the day was having to tell my male boss and co-worker that I breast feed and will need 15 minutes twice a day to "do my thing" (I just couldn't bring myself to say "express milk")...awkward. Haha! It's all good. Been there, done that.

I thank you for your prayers for me and my family as Mommy returns to work. Yesterday went very well for us all. The day went by fast for me, and Judah was a champ. We can do this.

Seriously though, it is hard to say goodbye to this...

What Seizures look like and How to Respond

This weekend as we celebrate our country's independence, we are thankful for our freedoms and those who help make them possible. But we also think of the millions of Americans, like Adrian, whose personal independence is hindered by a health issue that is hard to control.

Adrian is still in recovery mode from his recent seizure but has been able to stay fairly active. Each one is so taxing physically and emotionally for him. It's been a long time since we have had to deal with this, and it is very frustrating. But we are not alone. More than 2 million people in the U.S. alone live with epilepsy - a neurological condition that affects the nervous system resulting in multiple seizures. It's complicated living when you can lose consciousness without warning at any time.

Here are some facts from Epilepsy.com:

• Epilepsy is the fourth most common neurological disorder and affects people of all ages
• Epilepsy means the same thing as "seizure disorders" 
• 1 in 26 people in the United States will develop epilepsy at some point in their lifetime.
• 150,000: Number of new cases of epilepsy in the United States each year
• Epilepsy is a spectrum condition with a wide range of seizure types and control varying from person-to-person
• 65 MILLION: Number of people around the world who have epilepsy
• ONE-THIRD: Number of people with epilepsy who live with uncontrollable seizures because no available treatment works for them.
• 6 OUT OF 10: Number of people with epilepsy where the cause is unknown

Treating Epilepsy

It’s now been more than five years since Adrian had his first seizure. We know a little more about them now, such as they originate from the right frontal lobe of his brain, and his medications usually work, but…not always.

We have hoped and prayed and many times believed they were gone, yet we will never have 100% confidence that they won't return. 

We decided that our family and friends should be better prepared in the event that Adrian has another seizure or you happen to be around someone with epilepsy who has an incident.

Seizures present themselves in many different ways, and there are many different types. Sometimes the person just stares blankly for a minute or appears to pass out. The type of seizures Adrian has are more severe and include the convulsions that most people associate with seizures.

He has what are called TONIC-CLONIC SEIZURES, formerly known as “grand mal” seizures. They can be frightening to witness, but if you know what to expect, it may help keep you calm.

We put together this information explaining what can happen during a Tonic-Clonic seizure and how best to respond. Who knows, you may find yourself in a Starbucks or Panera Bread someday and be the one to help calm the situation when someone has a seizure...

What Tonic-Clonic Seizures can look like:

Based on the seizures I have seen, this is generally what happens:

• He turns his face to the left and typically falls to the left if standing, when the seizure begins.
• His eyes close as his body will stiffen, clench up and convulse for 1-3 minutes.
• There is often blood coming out of the mouth from clenching jaws that bite the tongue. Interestingly, Adrian's tongue doesn't bleed much anymore because there is a lot of scar tissue from previous seizures.
• Once convulsions stop, he may stop breathing for a minute and turn purple…yes, frightening!
• When breathing stops it is because his chest muscles have tightened during the “tonic” phase. So far, Adrian always begins to breathe again without CPR as this phase of the seizure ends.
• Seizures can cause loss of bladder or bowel control, but not often. 
• The "postictal state" is the brain's recovery period after a seizure that can last for minutes or days. For many, this is a time a confusion with headaches and exhaustion. 
• In Adrian's case, this is when it gets most difficult as he begins to yell, moan and wander around. He will resist anyone who tries to restrain him or hold him down and will show incredible strength. He has no awareness of who you are or that this is even happening.
• This postictal phase typically lasts more than 30 minutes for him, which can feel like forever.
• Most people with epilepsy do NOT have this extreme activity after the seizure, it is very uncommon.

How to Respond to a Tonic-Clonic Seizure:

Here are a few suggestions of things you can do to help if Adrian or someone else has a seizure when you are nearby.

• Most importantly – REMAIN CALM. This has happened before. 
• If you are close by when he begins to fall, try to catch him before he hits the ground or at least prevent him from hitting any sharp/hard objects.
• Look at a clock and note the time - try to time the active seizure but don't let that distract you.
• Remove any harmful or fragile objects from the vicinity around him and place a pillow or shirt under his head.
• CALL 911 –  Look for a Medical Alert card or I.D. bracelet 
• Take any children away from the room or area. Do not crowd around him.  
• Do NOT put anything in his mouth or try to give him water, food, etc.
• Turn his body to the side with his face pointing down to help him breathe better.
• Once the seizure is over, he may get up and walk around during the postictal phase. It's best NOT to restrain him before help has arrived. 
• Again, try to stay calm and speak to him reassuringly, but he will not remember any of this.  

This is a lot of information, but we hope you find it helpful. We are still learning so much about Epilepsy and how to live with it. The cruelness of this disorder lies in the total unpredictability of it. Yet, we have felt God's hand of protection each time a seizure occurred and pray that will continue. And we are thankful that even though these seizures have limited some of Adrian's freedom, he still gets up every time he falls down.