To My 6 Month Old Son

Dear Baby Judah,

My precious little boy. You are six months old! You're halfway to your first birthday already. My heart is full of gratitude for you and the wonderful time we've had together so far. But my heart also aches for all the hours we spend apart.

You are just sooo adorable and a big boy now! With chunky monkey thighs, rolly-poly arms and the most kissable cheeks conceivable, your snuggles are the best. Your dreamy big eyes surprised everyone by turning brown like mommy's, instead of the famous Seely blue. But most everything else about you takes after Daddy, which makes you super handsome!

6 month old Sweetie Pie

Your face can instantly change from a serious stare to a wide grin that melts us all. You give your adoring sisters big smiles, especially when they jump and dance to make you laugh. You give mommy smiles and giggles when we get to talk. You have plenty of grins to share with your grandparents, aunts, uncles and cousins. But I think you save your biggest smiles for Daddy. You two spend your days together and share a special bond. You are pretty much the center of Daddy's world right now, and he cares for you with attentive gentleness.

Mommy treasured our first months together, and it made me so sad when it came time for me to return to full-time work when you were just 10 weeks old. Even though I had to do the same thing with your sisters, it was not any easier this time. But I love walking in the door after work each day and kissing your puffy cheeks then cradling you every night in the rocking chair as you nurse before bed. Plus, I take you on all kinds of adventures when I have a day off and enjoy wearing you in our baby carrier.

Wearing baby Judah at Wallops Island with Uncle Aaron and Johanna

You have been so good to us. No illness. Rarely fussy or inconsolable. Healthy eater with some surprisingly loud toots! Of course your diet is still just mommy's milk and a little baby cereal, but we'll get into more interesting stuff soon. You don't seem to be in a rush.

You sleep well for the most part. Though you seldom allow me more than 4-5 hours of rest without waking at night, you usually fall right back to sleep after eating. You are rolling and wiggling all over now, and just starting to sit by yourself for a few seconds.

You are a priceless treasure. You bring healing to our family, both immediate and extended. So many love you and adore your chubby cuteness. We are indeed blessed by you, dear son.

With more love than I know how to express...

Mommy  

Here's a look at how you've grown...

NEWBORN BABY

1 MONTH

2 MONTHS

3 MONTHS

4 MONTHS

5 MONTHS

6 MONTHS

The Pageant Experience...in the news

Adria is in the news again! 

She had a wonderful experience at the Little Miss Apple Scrapple pageant last Friday. Though she did not win, Adria's confidence and performance on the stage made her parents and many fans proud.

The Seaford Star was kind enough to publish this little article I typed up late one night after Adria's pageant. I have to use my journalism degree and experience as a free-lance writer for this local paper once in a while ;)  

The article in the Seaford Star

Apple Scrapple Contestant leads a Beautiful Life with Spina Bifida

It took her a little longer to climb up the steps than the other eight girls, but when Adria Seely walked across that stage in front of a couple hundred spectators, she was full of confidence and smiles.

Friday night was the 10^th annual Little Miss Apple Scrapple Pageant at Bridgeville’s annual fall festival. Local girls ranging in age from 5 to 8 years old participated in the event, showcasing talent routines that included singing, dancing, hula hoop swinging and stand-up comedy.

Adria poses for me just before going on stage...after I saw that,
I knew she would be ok up there in front of the hundreds of spectators.

They announced each contestant and her hobbies and interests.

One of the shortest contestants was seven year old Adria Seely, who attends Woodbridge Early Childhood Education Center. This was the first time Adria has participated in an event like this, and it was quite an accomplishment for her to be able to get up on that stage and perform.

Adria was born with Spina bifida, a severe type called myelomeningocele, which involves the incomplete closure of the spinal cord early in pregnancy and leads to life-long challenges. Many children and individuals living with spina bifida are never able to walk, requiring a wheel chair for mobility. Adria was not able to walk until she was age two and then she required a walker to get around until age three. Now, she walks independently with only the support of Ankle Foot Orthotics (leg braces). She owns a wheelchair but only uses it rarely for longer distances.

Adria was both nervous and excited about the idea of being in the pageant but ultimately decided it was something she wanted to do. She began practicing a dance routine at home and on the night of the pageant, she danced to the song “It’s a Beautiful Life” by Ace of Base. Her performance ended with a spin and a bow, resulting in loud cheers.

Adria dances to "It's a Beautiful Life" - she remembered all her practiced moves and even finished with a twirl and a bow.

Most of the audience did not know there was anything unique about Adria’s beautiful life. But her presence on that stage was a testament to a life of perseverance and overcoming daily challenges.
October is Spina Bifida Awareness month. It is the most common permanently disabling birth defect and impacts individuals in many different ways beyond mobility. Most face issues with incontinence, learning delays, fluid on the brain, and a shorter stature due to under-developed leg muscles. They may require dozens of surgeries throughout their lifetime.

Adria has been fortunate in many ways, but she realizes that she does have differences from her school friends. And even though she did not win a crown or any roses at the pageant Friday night, her positive attitude and confidence on that stage made an impression and should serve as encouragement to differently abled families. Life may be tough but it still can be beautiful.

My parents were among the many family and friends who came out to support Adria

The winners announced! A sweet bubbly blond girl who boldly sang alone won the pageant.
Two of Adria's friends won the Talent Competition and Interview segment

Adria poses in her Party Dress after the pageant.
Mommy did not have time to curl and style her hair, since I got off work at 4:30 that day and she had to be there by 5:15! 

Proud mommy with her amazing girl.

Big October events and Spina Bifida Awareness

Drama, drama, drama. Sometimes that's just life with two little girls. The slightest disturbance to their ideal world and there's a fit thrown or tears shed.

It must have been the adjustment of going back to school, but there was a LOT OF DRAMA in our house in September. And most of it seemed to come from very ordinary things.

Now that October is here, the girls have mostly adjusted to their school routine and made new friends. Daddy is enjoying his days with Judah. And Mommy is staying busy at work, while trying to find balance in home responsibilities and the fun stuff we do.

Last night, I took Adria out for our first Mommy-Daughter date in a long time. She has been asking me to go out just the two of us since before her birthday a month ago.

Mommy-daughter date last night

Adria and I had a great dinner together at Grotto Pizza, then headed to her pediatrician for her 7 year check-up. Unfortunately, we were the last appointment of the day and had to wait a looooong time. Our date ended with Adria spazzing out when they tried to give her a "Flu mist" vaccine in her nose. I thought it would be better than a shot! Drama indeed. She was sad that was all we had time for, but she's got more to look forward to in October

We have some BIG STUFF planned for the next two weeks!

Apple-Scrapple Pageant

Tomorrow night, Adria will be doing something very new for all of us. She will be participating in a little pageant for girls age 5-8 at our town's fall festival called Apple-Scrapple. The weekend event draws thousands but the pageant is only open to girls in her school district and is geared toward having fun while the girls learn confidence on stage.

Judges will interview the girls and then the girls will do a talent. Adria will be dancing to "It's a Beautiful Life" :)  She's been practicing, so we'll see how it goes!

When the sign up sheet for the pageant came home from school, I asked her if she was interested. At first, she was very nervous about the idea of being alone on stage in front of people (aren't we all?!). I tried not to push the issue too hard and let her know it was her decision. She said yes and now is both nervous and excited!

The Pageant is at 6:30 p.m. Friday night behind the Bridgeville Fire Hall. We'd love to see you there!

Adria practices her pose.

Children's Run and Half-Marathon

Next Friday will be a big day too! Both the girls will be participating in a Children's run in Pennsylvania. It's part of the Runner's World weekend of events that concludes with a half-marathon for adults on Sunday. I'm supposed to run that event but am very nervous because I have not been able to train for it well.

The girls will be running a half mile. Adria tries to practice for it when we can, and I'm hoping she'll be able to complete it. Last year, she showed us that she could complete a half mile race, even if she finished in last place. This year, she talks about wanting to WIN the race...

I don't want to tell her she can't win, but the reality is that she is not able to run as fast as most children because of her weak lower legs that require braces for support. I just try to encourage her to do her best when she is out there. I tell her there is no way mommy is going to WIN her race, but that we run at our own pace and finish the race when we can. That's our goal...to finish the Race!

October is Spina Bifida Awareness month

This makes for a very busy month for us, but I think it's very fitting that Adria participates in both of these events at this time. October is actually SPINA BIFIDA AWARENESS month!

Adria can show the community that in spite of the limitations and challenges that she faces with spina bifida, she can enjoy life and push the limits!

A couple weeks ago she told me, "Mom, I don't feel like a spina bifida kid. I'm like the other kids at school."  I was glad to hear her say that because I don't want her to feel different.

Then just two nights ago, after I catheterized her, she said, "Mom, I wish I was like the other kids at school who can just go potty without a catheter. And I'm the only one who has to wear braces on my legs. Sometimes I feel like I don't fit in."  Ugh, it's hard to hear her talk like that. I assured her that she has many wonderful friends and teachers at school, and I'm so proud of how well she does.

It's just like that. Some days are much better than others. You know, Drama comes and goes.

How I love this girl and pray that I'm doing the right thing by giving her the opportunity for these big events. Go Adria!

The Mom Bod - 5 Months after Baby

It is a strange feeling to stand in front of a mirror and not recognize the body reflecting back at you.

That's how I've felt for much of the last year but especially these past five months. There are extra curves, rolls, lumps, jiggles...everywhere it seems. The truth is, I'm still carrying around about 20 pounds more than I did last summer before I became pregnant with Judah. You might not notice it as much, but the mirror and I understand.

Last year, I shared about being a "Not-so-Perfect 10" and right now, I really miss that body. Most of my clothes don't fit right...or at all. My 7 year old daughter likes to note how I look like I'm making another baby and how my thighs are so soft and chubby. Thanks for that.

But after all, I DID just give birth to my THIRD child 5 months ago! Yes, I am cutting myself some slack. And I am not exactly trying hard to lose weight. I still eat like a horse.

I laugh when people say, "Doesn't breast-feeding help you lose weight? I thought it burns a lot of calories."

Yes, it does help your uterus get back in shape. Fortunately, my baby gut did not stay huge for long but it's still very much there. Yes, nursing supposedly burns like 500 extra calories a day. But it makes you want to EAT at least those 500 more calories too!!! I am just as hungry now as I was 8 months pregnant!

I want to exercise. Really, I do. But for some reason.... I struggle to fit that in between a full-time job, mothering 3 young children, feeding my baby, keeping house, and trying to squeeze out some time with my husband.

And silly me, right after Judah was born I signed up to run a big race. A 13.1 mile half-marathon in fact. I'm supposed to do this in October - less than a month away. What was I thinking? That my children would all sleep perfectly through the night, and I'd pop out of bed by 6 a.m. to run 5 miles? Uh huh. Definitely delusional. At this point, it looks like there's going to be a lot of walking, but I still plan to finish that race.

But I know there are many moms who get where I'm coming from. It's interesting to see all the different ways women's bodies respond to childbirth and parenting. As you likely heard, the "Dad Bod" became a thing earlier this year, so here is my break-down of the different types of "Mom Bod":

• Skinny Mom - pops out a baby and within a month or so puts on her pair of size 4 jeans with no problem. She's blessed with some ridiculous metabolism. She is really annoying to the rest of us, but we still love her. Hahaha! 
• Huggable Mom - is a curvy lady and pregnancy just added to them with extra pounds that just won't go away. Baby is a toddler now. Or maybe a high school senior. The battle with weight loss has been real but it's okay because her family loves her comforting hugs. Hopefully, she embraces the beauty in the woman she is now.
• Super-Fit Mom - carries her baby and holds onto baby weight for a few months. Then, she kicks into gear with the healthy eating program and work-out routine to get a buff body. We applaud her motivation and just ask that she please be gracious to those of us who don't have as much.
• Everyday Mom - delivered a baby and her body will never be the same. It's softer and more jiggly and covered in freckles or cellulite, but it works just fine. It may not compare to Hollywood's post-baby bodies but that's perfectly okay. 

Hi, it's me. Just another Mom trying to love her babies and her body, no matter how they change.

Know this. No matter what your Mom Bod is, your children love you. Even if they pick on you (Adria). And whether you're curvacious or rail thin, being confident and loving your own body is more important than any number on a scale. 

In truth, I am very thankful for the healthy body that God has given me. And while I do enjoy being active, at this phase in my life that activity is more focused around my children than anything else.

Love yourself today. Whether you're a mom or not, embrace the beauty in the woman that you are. Is that cheesy enough for you? I'm for real, though.

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!

Thankful in the Mess

This morning I'm enjoying our sunroom and the stillness before our home awakens and there are three little ones needing fed, changed, and put together for the day.

At least I'm trying to enjoy it for a few minutes and not be distracted by the mess. By all there is that needs to be done.

A pile of princess figurines sits next to me on the couch. Dried pizza crust from last night's dinner lies on the floor, along with several wrappers from packs of gummies. They blend in readily with the toys that I tried to avoid tripping on. The kitchen sink is full of dirty dishes. There are bag of groceries that still need to be put away. Piles of dirty laundry to be washed. The list goes on and on.

But it's not for lack of effort. Especially on the part of my husband who is home during the day trying to balance the needs of a 3 month old baby along with 2 young daughters. In spite of all their demands, he still amazes me with all that he does accomplish inside and outside our home each day.

And if it were only up to me, the mess would be insurmountable. Yes, I'm a bit of a messy. Definitely NOT a neat freak. Adrian has always been the "neater" one in this relationship.

It just feels impossible to keep up with everything. Yesterday, was a crazy busy day for me at work with back to back client appointments all day, during which I barely squeezed in time to pump my milk and scarf down food at 1:45 p.m. We had to run errands when I got home, so by the time the kids were in bed...we had nothing left. Bed called.

Yet when I look at it all with fresh eyes, I see all there is to be thankful for in spite of the mess:

• The toys everywhere mean I'm blessed to be a mother with children who are healthy and active
• The dishes in the sink mean we have plenty of food to eat
• The fact that I'm up early because cries woke me and I couldn't sleep means I have a precious little baby
• The ever present laundry means we have many clothes to wear
• The exhaustion I feel from yesterday's busyness means that work is going well and our family is being provided for
• The bills on our desk mean we have a home to live in and cars to get around
• The markers and paper covering the kitchen table mean my daughters have a creative side that enjoys crafts
• The general mess means that my family is able to be home during the day and not be in child care somewhere else
• All the things, all the stuff, all the mess means we are BLESSED

And for all that, I am so thankful. Especially when I look beyond the mess and see all that has been done. The bathrooms that are clean. The bottles that are put away. The towels that are washed. The clothes I wear to work neatly hung. The trash that's been taken out. The garage that is swept. The lawn that looks fabulous. And most of all, the children who are fed and happy. The list goes on and on.

That means I have a husband who cares and works hard every day at one of the toughest jobs a man can have...Stay at Home Dad.

All the mess means that I have this wonderful family to love.

Today I am thankful. Still, I somehow wish this thankful heart could make the mess go away...haha!! Okay, well I better get moving and try to clean up a little before heading back into the office for a busy Saturday.

Breastfeeding and Work

Twice a day. Every day at my 9-5 job. I retreat into the basement powder room with a large black bag. About 15 minutes later, I emerge with two little bottles holding 8-10 ounces of freshly pumped Mommy's milk.

That's my life right now. And thousands of Working Pumping Moms worldwide have a similar story.

It's not easy. It's annoying. It's inconvenient. It's awkward and can be embarrassing. It's really a pain in the but to try to squeeze into a busy work day. And it makes you feel more like a cow than you ever thought possible.

(Ok I'm back. It's 5:45 a.m. and my baby boy just awoke and wanted some direct-from-the-source milk!)

So why do we go through all this hassle?

It is the best nourishment we can offer our babies. It is healthy for both mom and baby. It has proven long-term benefits for the life of our child. It allows us to keep up that special nursing bond when we are home.

Today marks the last day of World Breastfeeding Week - yeah, I just realized that's a thing. This year's theme is BREASTFEEDING AND WORK: LET'S MAKE IT WORK!

It's literally a global initiative to support women in combining work and breast-feeding. Shoot, I could be the poster child for this campaign!

With each of my three children, I returned to my full-time profession outside the home when they were about 10 weeks old. My 14 week old son has had nothing but Mommy's milk to date. I pumped for and nursed both my 3 and 6 year old daughters most of the first year of their lives.

My handsome little 3 month old.

And I have to admit, I love that my boobies are able to provide my children life-sustaining food. It's one of the amazing miracles of life that I don't fully understand. My baby cries and "Poof!" my chest is suddenly 2 pounds heavier and full of milk. Seriously, how does that happen?

But don't get me wrong, nursing is no walk in the park. No one can prepare you for the pain and rock hard boobs when your milk comes in for the first time a couple days after baby is born. And then there's the latching issue. And the sore nipples. And the leaking milk on your bed sheets at 3 a.m. Am I getting too personal here? Just trying to be real. These are issues that like 99% of nursing moms have endured.

Enduring is what it takes to be a nursing mom, especially a Working Pumping Mom. Three babies later, I continue to believe it's worth it.

When I get home, I give my husband and daughters a kiss then sit down to breastfeed my son. It's a great way to unwind and enjoy quality baby time. And the highlight of my day is quietly rocking him and nursing with bedtime lullabies playing just before I say goodnight.

That said, please don't get too upset if nursing did not work for you or your baby. That's totally fine and I have tons of friends with perfectly healthy formula-fed babies and children. Plus, you should know that I have to start supplementing with formula when baby is 4-5 months old because I can't keep up with the feeding demands.

I just want to encourage mommies who are maybe struggling with nursing, especially early on, to stick with it because it will get easier. And yes, you can work full-time and successfully breastfeed your baby.

If you do return to work and become a pumping mom...just be prepared for lots and lots of bottle cleaning and maybe a few awkward encounters in the office.

Just to dispel the mystery, here's the Black Bag after use.
Lovely, isn't it...

I am too Busy

I think I have a problem. I cannot stay home.

It's been more than two weeks since I last wrote, but it's not for lack of ideas. There have been multiple topics running through my head. I just haven't made time to write them.

Because I can't seem to stop going. It's all in the name of "fun" and family time, but in truth I'm getting worn out. And my family is too.

The girls enjoy our outings and even ask every morning, "What are we doing today, Mom?" Actually, they ask it so much it's kind of annoying. Especially now that most days the answer is, "Staying home because Mommy has to go to work."

They moan about this. Staying home is boring. And I know it's my fault they feel this way. I've trained them to Go. Go. Go! To always seek adventure. And fun. To the point that it's detrimental to all of us.

The truth is, I don't think I've stayed home a single day since I returned to work a month ago. Sure, I'll stay and clean for a few hours some days, but I end up leaving most of it for my husband.

Even when I was on maternity leave, it was a rare day that I stayed home all day. I'd pack up newborn baby Judah and take him all over the place with me. Poor guy ended up nursing in our van more times than I can count.

And now, he's having trouble establishing a good sleep, eat, play schedule because I don't keep him home enough when I'm off work. Generally, our babies get into a good, predictable rhythm of when they eat and sleep, which is critical for them and Daddy's well-being.

This is my confession I share in the early morning hours, before the sun rises above the treeline: I AM TOO BUSY.

I need to spend more time just sitting down and coloring or making puzzles with my girls and listening to their ideas, instead of hauling them off to every event or festival I can find. I need to spend more time staring into my three month old son's eyes and trying to get his adorable baby giggle to escape from his mouth. I need to sit and snuggle with my husband and talk of dreams and days gone by. 

I need to be still and know He is God, the One who is the Author of my days.

Why I am so busy? Why do I have this insatiable need to go?

It does come from my Dad's side of the family. My sister got a good dose of it too. But the truth is, I think I am this way largely because it keeps me from stopping and thinking too much. Maybe, I'm afraid that if I stop and sit still too long I will be overcome by the difficulties. Maybe, it's my way of dealing with the unique challenges my family faces. Maybe, I've been pushing myself and going so hard, so long...that I just don't know how to sit still.

And yet with this conviction weighing on my heart this morning, I find myself looking at the clock and saying...I better wrap this up, I still have time to go for a run this morning!

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.