Precious Feet that Feel No Pain

When I took Adria’s leg braces off a few days ago, her toes were bleeding. She had no idea. She could not feel the pain from the raw skin and open wound between her toes. It made me sad and also feel guilty for not protecting her feet better.

For a child with spina bifida, she actually has an impressive amount of sensation in her lower legs, but there does not seem to be much in her feet and toes. She can twitch her left foot back and forth, but she cannot really move her right foot.

The wound in her toes appeared to come from a case of "athlete’s foot" because her toes are so curled up and they did not get much air that day. As I cleaned off the blood, she did not flinch or cry but she did ask about the sad look on my face.

I couldn’t help but think…Is it more difficult to hear your child cry or scream when she is in pain OR to hear No cry when there should be one? Either way it hurts a mommy’s heart.

Adria was almost a year old when I experienced this for the first time. She had just been playing and sucking on her tiny toes when I noticed her toes were slightly bloody. Then I realized she had actually been chewing on them hard enough to break the skin, but there was no whimper. There was no sign at all that she felt it. Tears. At that time she had not even begun to crawl yet, and we were still adjusting to life with spina bifida.

The doctors had warned us that we would always need to pay special attention to her feet, and to check them closely every day.

Unfortunately, the bloody toes this week was not the only issue with her feet and legs. For most of the past three weeks, she has not had a good pair of braces to wear because she broke them…twice. While we waited and waited for her new pair to arrive, we used the old broken pair only when necessary.  Though we tried to use caution, somehow her shins got several bruises and her tiny lower legs looked so beat up. Again, she did not feel the bruising on her legs yet we still felt bad that they had appeared.

Adria has progressed to be able to walk around some without her braces, which is quite miraculous! However, after two weeks without braces she has been regularly complaining about her feet hurting. It seems that even though she can’t feel the bleeding in her toes or the bruises on her legs, she can feel an ache in her legs bones and muscles from not having the support that she’s used to.

A few times she has cried and asked us to take her to the foot doctor L  We did call her orthopedic doctor at AI DuPont Children’s Hospital about it, who recommended we wait and see how she does with her new DAFOs.  Her new braces did finally arrive on Wednesday, and she loves the pretty heart design that she chose.

Adria getting ready to try on her new braces.
The old ones caused bruising on her legs even though she didn't wear them much.

Her precious little feet are only a size 6 without braces, that's the same size as her 2 year old sister.

Her pretty new heart braces with purple straps!

Now that they are here, she will finally be able to return to pre-school after two weeks off. We had to keep her home because she didn’t have good braces to wear, and all last week was spring break. She really missed her friends at school.

It’s been a rough couple of weeks for both the girls with coughs, runny noses, stomach aches, ear infection, pink eye, and getting sick late at night added to Adria's feet problems. Mommy and Daddy have been fighting something too.

Yet even with these challenges, I am reminded of our blessings. There are so many parents who face much greater difficulties every day.

Today I especially think of a couple our age who just had to say goodbye to their precious 16 month old daughter a couple days ago. Though she had significant health challenges, she was a beautiful little girl with a big smile and I can only imagine how her parent’s ache to not be able to give her a kiss again… But they seem to be finding strength with the support of family and in knowing that one day they will be with her again in heaven.

I have no reason for complaint as I pray for my daughters’ healing since in the same prayer I ask for God’s peace that passes understanding to be with this young family who has lost so much.

Easter Traditions and Special Memories

Growing up, the excitement we felt Easter morning was second only to Christmas! Mom was always great about having Easter baskets for each of us four children but the real fun was the jelly beans hidden around the house. We often got to do a quick hunt for those even before we dressed for church. And when we dressed for church, my older sister and I typically wore coordinating Easter dresses hand sewn by my mother.

Anyone who knows me is clearly aware of the fact that I did NOT inherit my mother's ability or desire to sew. In fact, I downright detest the idea of sewing...JCPenney discount rack, here I come. However, I know that sewing for her daughters and granddaughters is a special gift my mom wants to share. It came as no surprise when Adria announced a couple weeks ago that Grandma was measuring her for a new dress. And thus my mom toiled in her sewing room the night before Easter finishing three whimsical little dresses for her three granddaughters ages 6, 5 and 2.

Easter girls to pose in their new dresses made by Grandma. As you can see, I was not hugely successful

Cousin Sophie shows off her dress during the Easter egg hunt after church

Just as my parents created some Easter traditions for us, I too want to share that with my daughters. They are at that perfect age when holidays are getting very exciting for them. That said, this procrastinating mother (I think I did inherit that trait from my mom...) found myself waking up early Sunday morning to run to the store and grab a couple more things for the girls' Easter baskets and then hide some eggs around the house just before my sleepyheads stumbled out of bed. This included the Bunny Eggs we had made last week. The last minute rushing paid off with excited little girls stomping around the house in search of their eggs.

Happy girls awaking to Easter baskets on Sunday

I want Easter and holidays to be fun for them, but I did want to make sure to share the true message of Easter. After the hunt, I snuggled them on my lap, though Johanna did not stay long, to read a short children's story. When Adria saw the book she said, "But Mom, that's not an Easter story because there are no eggs on the book!" Looks like I definitely need to work on telling her the real story more. I read about Jesus riding into town on a donkey, then a few days later being hung on a cross for our sins followed by the joy of the empty tomb. Because Jesus lives we can live with hope, no matter how many times life knocks us down. This reminded me of when I read this same story last fall and Adria asked "When will I go in the Sky?"

It was an enjoyable day for us. Last year we spent Easter in Virginia and did not have the opportunity to be around much family, but this past weekend we spent time with both of our families celebrating this most important day for remembering that our Savior is Risen! The grandchildren enjoyed hunting for eggs that my Dad had hidden around their house and later we had dinner with Adrian's family and had a surprise visit from some of his family we had not seen in years. Oh yeah, and the girls got to hold Granny's newborn kittens as well as ride on Aunt Leona and Uncle Gary's four-wheelers!

We are thankful for the memories created and the time together. We hope you had a blessed Easter as well!

P.S. I would have posted this a couple days ago, but I was experiencing technical difficulties...

 Adria hunting for Easter eggs at Grandma Outtens after church

Johanna loves the wind in her hair and Sunday was a very windy day for an egg hunt

My parents 5 grandchildren all together!

My Family including my parents, 2 little brothers, sister and her crew, my aunt Bonnie and her 2 girls, plus an extra friend and Kipper. Happy Easter!

  Little girls in awe of new kittens at Granny Seely's house

The girls enjoyed sharing the kittens with Aunt Betsy, cousin Ireland and three new friends, daughters of Adrian's cousin Ben.

Easter Craft Eggstravaganza

It was the most beautiful weekend so far this year. AND I was off work! The girls and I spent pretty much all of Saturday outside making crafts, swinging and playing in the sandbox. These are the days we live for.

Truthfully, I was hoping to take them out and about to an Easter egg hunt or festival somewhere. I don't sit at home very well, and I think they have acquired some of that "on the go" bug from me too. However, my dear husband reminded me to do what was best for our girls. They had been sick and fussy last week and just needed some focused mommy/daughter time at home. Plus, Adria does not have any braces that she can wear right now to give her the support she needs to safely walk around. She has broken two pair in the last week and even though Daddy tried to fix them, they caused major bruising on her legs :(

So while Daddy was busy helping some friends move on Saturday (we know how important moving help is!), the girls and I made our own Easter fun right in the backyard. My mom is very crafty, but I just got a small amount of that skill. I need to use resources to get ideas. We made a fun and easy craft that I saw in Family Fun magazine and then got a little extra help from this tutorial video the girls liked.

Presenting...Plastic Egg Easter Bunnies!





I just love the focus and concentration on their little faces! Johanna preferred playing with stickers over trying to make bunny ears out of craft pipe cleaners, but Adria loved gluing on the eyes and tails.

Adria proudly showing off her dozen new Easter bunny friends that we made (with a tiny bit of "help" from little sister Johanna)

After a couple hours of making our bunnies and taking a lunch break, we began the painting craft. Now this is the stuff Johanna really loves. She never sits still...unless she's coloring or painting. Maybe there's an artsy side in her future?

We cut out the cups of an egg carton and painted each one in bright, springy colors. They dried over naptime, and we haven't yet finished this project. Our hope is that we'll add pipe cleaner stems and make a lovely bouquet of egg carton "tulips."

Precious little profiles, deeply focused on the task at hand.

Johanna's little hands at work painting

Our painted egg carton "flowers" and my messy hand. Good thing we did this outside!

And then there's the yummy crafts that you get to eat. A couple weeks ago we made these delicious little lamb sandwiches (another idea from Family Fun). They were a bit more labor intensive than I anticipated, but Adria loved them and thought they were delicious.

LITTLE LAMB SANDWICHES

Ingredients:

Small bagels or English muffins
Provolone Cheese
Black Olives (which my girls LOVE)
Mayo or Salad Dressing
Shredded Mozz Cheese
Tiny Pepperoni or Cut up Ham circles

Directions:

It's all about using the Mayo as an adhesive. A little on the bagel, then place the slice of cheese. Cut out circles and half circles of cheese for snout and ears. Slice and dice black olives for eyes and mouth. Pepperoni for nose. Top it off with shredded chees for the hair - always using mayo to get the parts to stick. The Lamb Sandwiches were super cute and turned out tasty, especially when served with soup. Adria's Granny and Grandad even got to enjoy them. However, these will be a rare treat when there's extra time to spare.

Adria was quite pleased with the final product of our Lamb Sandwiches. They weren't perfect but that's okay, they tasted good!

Sometimes doing crafts can test my patience when the mess begins to spread, but I try to remind myself it's all worth it just for the precious time to be with my little ones.

But before I go, I have to note a not-so-precious time. Once again, as I was halfway through this post, little Johanna awoke getting sick and throwing up in bed. And once again we did the late night quick bath and bed clean-up. Poor thing is still recovering from an ear infection and pink eye! I so hope she's all better soon.

Maybe it was all the excitement and running around tonight because of her new pair of pumps that Daddy bought :)

Returning to our Virginia home

The connection between time and space is unique. You can return to a place you haven’t been to in a year or 10 years and suddenly feel like it was just yesterday that you stood there – seeing the sights, hearing the sounds, smelling the air.

Two weeks ago Adrian and I returned to Chesterfield, Virginia for the first time since our sudden move last spring, and the memories of our short time there came rushing back. Nearly a full year has passed since we packed up the items in our 3,100 s.f. home, barely before dust had a chance to settle after we bought the home. Pictures had not even been hung over the fresh paint Adrian had put on the walls, and the landscaping he and his sister and brother-in-law had planted in the fall had just begun to bloom. Bottom line, we had not even settled into the house before we were moving again.

Our house in Chesterfield, Virginia on a rainy Saturday two weeks ago.

We had lived in our home less than nine months when life events pointed us to take a chance and put up a “Home for Rent” listing on craigslist.com. Within 48 hours, we had three positive inquiries and a showing scheduled. Amazingly, the first and only family that we met with turned out to be the right fit for a tenant for our home and thus we became landlords.

It was a huge financial risk, but we were in no way ready to try and list the home for sale so soon after purchase. We had to trust that God made the provision, and we would do our best to be smart about it. Thankfully, our tenants have been great. The last year wasn’t without a few hiccups, but overall we could not ask for a better family to be renting our home. We never once had to go down to Virginia to resolve an issue.

But here we are a year later and the time had come for them to renew the lease, so we thought it would be best to take a quick trip down south and do it in person. A couple months ago, we were uncertain if they would continue with the lease, which had us nervous, but thankfully they did and now we have another year lease agreement in hand!

As we drove down familiar roads that rainy weekend, we saw our favorite places to shop and eat that were all within 10 minutes of our house. We also road past the car dealership where Adrian’s last seizure occurred, just before entering our community.

Then we stepped inside our house: the house we own but is now someone else’s home. The paint colors had mostly remained the same, but their family photos covered the walls and her appliances and dishes sat on the counters.  It smelled of fresh baked cookies as they welcomed us in. I realized that they had now lived in the house longer than we ever did. As they talked about the neighbors, their family and plans for the future, I was struck by the sense that they had truly made this their home.

And while being in the house brought back memories that seemed like just yesterday, it did not feel like home to us.

We enjoyed our short time living in Virginia, and we are glad to know the people we met there. Yet as we drove away in the rain headed back to Delaware, we experienced a sense of closure that we had not before. Virginia is no longer our home.

One of Those Days

Today has been one of those days, especially for Daddy. A day when life seemed determined to be frustrating.

It started early when he had taken the girls outside for some play time this morning and then CRACK, Adria's leg brace broke right along the ankle. If you saw our last post, you know that she had just broken her normal brace at the heel. We will be waiting another week for the new pair of DAFOs (Dynamic Ankle Foot Orthotics) to arrive, so we were trying to make her old pair work. They had a small crack that Daddy had taped, but apparently that wasn't good enough. Again it was on the left foot, and the crack nearly broke it in half!





Daddy tried to reach me at work, but I was in the middle of two hour meeting reviewing our cabinet and flooring offerings. He wanted to discuss Adria's braces and her options before trying to send her to pre-school, but I took too long to get back with him. He ended up keeping Adria home, since she has very limited mobility in public without her braces. She can walk some, but easily falls and could injure herself.

I called her orthotist (brace maker) to see if he could offer a temporary fix. He said they would try to rush our order, and we should have the new braces by mid next week. He could try to weld them together at their Wilmington location in AI DuPont Children's hospital, but there's no guarantee that would work.  We decided to try the Daddy Fix-it route for now and hope they can hold up for the next week! We'll just keep her out of the braces when we can.



That was just one thing. Then there was Daddy trying to work on an issue with our car that became extremely difficult. With Adria staying home from school, the girls seemed agitated at the change in routine and were extra temperamental. There were many other challenges that don't need to be detailed, and of course this all happened on a day when I had to work late.

Once I got home the dinner I had planned did not go at all as planned, but it still worked out. We needed to run to Milford to pick up some prescriptions and a few other things, but as we were preparing to leave, Adria started having some bowel trouble. We took care of her but didn't leave the house until late. About 45 minutes later when we were walking around the store, Daddy smelled something terrible. It was Adria. Her bowel issues had returned... and Mommy was clear on the other side of Wal-mart. Eventually he found me and I took her to the bathroom to get cleaned up.

It was almost 9 p.m. by the time we headed home, which meant it was past 9:30 before the girls got to bed. Much later than we like.

Finally, we settled on the couch for some quiet and rest. I had just gotten ready to type up a blog, when I heard a cough and cry followed by a desperate plea for "Mommy!" I went in the girls' room to find Johanna, her pillow, and the blankets covered in milky puke. (Forgive me, I know this is nasty, but sometimes you've gotta be real about parenthood!) This is the second day in a row our poor little girl has vomited for no apparent reason. We are getting concerned because it's not like a normal stomach bug, and she's had an unusually decreased appetite lately.

So there was no rest for the weary. While I quickly hoisted Johanna out of bed and into the tub where her troubles continued, Daddy came and began clean-up in the room. All the bedding was impacted by this incident, and Adria had to get up too since they now share a bed. There was nothing pleasant about the experience. As I washed the filth out of Johanna's hair and wondered what was troubling her, I was so thankful that I would not have to clean up the bed too. Even with this final blow on a very frustrating day, Adrian still stepped in and cleaned it all up and made up the bed with fresh sheets. I owe him!

Now the washer full of the soiled sheets just stopped running, and I can put them in the dryer. Time for some rest. Tomorrow is another day.

Her Broken Brace

While I was sitting at work on Wednesday, Adrian sent me a surprising picture.

Adria's left leg brace a.k.a. Dynamic Ankle Foot Orthotic (DAFO) had broken! Right down along her heel there was a huge crack. We never saw it happen and don't know how it got there, but maybe it's a sign that she's playing hard at pre-school and putting them to the test.



Adria can get around the house barefoot okay, but she wouldn't be able to go to school or play outside without her braces. Daddy located an old pair of braces (that had a small tear in it) and put them on until we could get her broken brace fixed.

As far as I know, there is just one company in Delaware that provides pediatric orthotics, devices to help correct primarily feet and leg problems. We were able to get her into Lawall Prosthetics and Orthotics in Dover on Friday afternoon to see what had to be done.

The specialist who works there is the same man who fit her for her very first pair of braces when she was just nine months old. Super nice guy. But after a look at the damage to her brace, he did not think fixing it was an option. She got the braces back in September, and they came with a 6 month warranty...we are just beyond that.

But most health insurances, including ours, only cover one new pair of braces a year. That had us worried because these braces cost over $3,000 out of pocket and about $500 even with insurance. However, "making do" with the broken brace is not an option. The orthotist made a call to Cascade, the company that made her DAFOs, to see what options she had.

Great News! Cascade agreed to honor the warranty, even though we were outside the 6 month window, and provide Adria with an all new pair of braces. Praise the Lord!

Now to get fitted for her new braces. This is how it works:

1. The orthotist puts on two layers of a tube-sock like material.



2. While he prepares a wrap like plaster of paris, Daddy and Adria look at options for the color and design of her new braces. 

 

3. The orthotist sticks a rubber tube along her shin and foot and begins to wrap her lower leg and foot with the wet wrap to make a cast. He does this on both legs. 

 

4. Once the foot mold dries, he makes a few marks and uses a hook knife that looks like a good 'ole utility knife to cut along the yellow rubber tube.



5. He gently removes the cast from each leg so that the forms are in tact. He will send her foot molds directly to Cascade to create her new pair of braces.



 6. Adria officially decides on the Pink Hearts design for her new braces. She insists on having purple straps with them instead of the recommended pink straps. There was no arguing this point...



7. The orthotist makes note of a few more measurements and her color selection for the new order.



8. Now all that's needed is to call Adria's orthopedic doctor at AI DuPont Hospital for Children and get a new prescription for the braces. Hopefully, it won't take much more than a week for the new pair to come in.

After all the excitement of the brace fitting, we headed to the Verizon store for Mommy to upgrade her iPhone for the first time in over two years. To reward the girls for their patience that afternoon, we headed to Chick-fil-A for dinner and fun in the restaurant's playplace. They loved it, but it was basically impossible to get little sister Johanna to sit and eat with the fun right there!

And before going home, we had to stop at Wal-Mart for our weekly contribution. Of course by then Adria was worn out and unable to walk much, so we contained them both in the shopping cart. Unfortunately, Wal-Mart doesn't have the dual-seat racecar style cart that Food Lion and Lowes have. Just one of the reasons that Wal-mart is not my preferred shopping venue, but you do what you gotta do in Delaware!

Johanna and Adria crammed in the Wal-mart shopping cart after a busy afternoon

Chasing Dreams...IN HIS WORDS

Where do you see yourself in three years? In ten years? When do you want to retire and what do you want to do when you retire? I was trained to use these questions for the short time I was a life insurance sales rep to create a connection with the people I worked with and to help them set goals, have dreams and realize the importance of providing for those goals and dreams. I was surprised to find out the number of people who didn’t have a clue for an answer to any of those questions. Whether people bought any insurance or not, I always enjoyed having the conversations with them and helping to inspire them to begin to think a little into the future. To have hopes and dreams of what they might want to do and be. Of course I always pushed them towards thinking about travel because I am very biased toward it, and it’s more affordable and less traumatic than actually moving.

I have always been a dreamer, not one to walk the straight and narrow but one to hike over the mountains just to see what’s up there. I think that’s what ultimately brought Julles and I together because she is much the same way. We each have our own individual dreams, some of which have had to be put aside for the sake of having a family, but we also have our dreams of what we want to do and be as a couple and as a family. Yes, there are moments that we cry for the loss of the personal dreams that we had to lay aside for the sake of achieving the larger dream of having a family, but those dreams may not be gone forever. My own is that I would much rather be living close to the Canadian Rockies. I won’t bother you with the why’s and where’s, but that’s what it is. I feel its pull every day but it can’t be. A personal dream must be sacrificed in pursuit of achieving a much larger family dream.

I personally believe that our dreams and all the time we spend talking about our dreams is one of the things that has helped hold Julles and I together through the many trials that our marriage has faced in the ten years we have been together. The stress of everyday reality, bills, unmet needs, and a plethora of other things can tear a marriage apart. That’s why the current divorce rate is close to sixty percent. But having and talking about dreams as a couple breads hope, it brings life into the relationship, it lets you know that no matter how bad today is another day in another place will be much better. It will also make you stop thinking, talking, and blaming each other for your current tough situation.

A long time personal dream of mine has been to visit Spain and Italy. I love the language, food, wine, and the people I have met from there. This January the stars finally aligned for that dream to become a reality, and I was able to travel to Spain with my sister Leona where another sister Angela is stationed with the military. We spent three days in Rome, Italy and ten days traveling through Spain including a trip to Gibraltar. It was better than I even imagined it would be and was smooth traveling because Angela knew all the quirks of international travel. The whole opportunity came when I least expected it and worked out better than if I had been planning it for a year. That’s the beauty of having and holding on to dreams. I am currently fulfilling another lifelong dream of learning to play the piano.

First day in Europe - Madrid, Spain

Adrian's travel companions, younger sisters Leona and Angela

View outside the Coliseum in Rome

Sitting in an ornate garden in Barcelona

So where do you see yourself in three years? What about in ten years? Where have you traveled and where would you like to travel? What are you and what would you like to be? Are you living your life or is your life living you? Have dreams and hold onto them because they want you as much as you want them.

~ Adrian Seely

Adrian dreaming on the shores of the Atlantic Ocean in Spain