Different and Same. Thank you, PBS!

It is a very touching thing indeed when children's programming and literature creates awareness for ALL types of children and their differences, especially when they are the same as my daughter.

Yesterday, Adria and I watched what is quite possibly my new favorite children's show. There is a program aired on the public television station, PBS, called "Daniel Tiger's Neighborhood." This adorable cartoon for pre-schoolers allows the legacy of "Mr. Roger's Neighborhood" to live on in fully animated form with a young tiger playing the part of Mr. Rogers.

Now I have to admit, I don't usually sit down and watch shows with my girls unless it's family movie night. But after I hit play on the DVR and saw what this one was about, I had to sit down and watch it with Adria.

You see, Daniel meets a new friend named Chrissy. She is a fun, adorable brown-haired little girl, but Daniel quickly realizes that she is different. Chrissy wears braces and uses crutches to walk.

Daniel Tiger with his new friend Chrissy, who reminds me of Adria :)

Adria didn't say much, but as Daniel began asking Chrissy about her braces, Adria slid off the couch and moved closer to the TV to watch more intently. It made me tear up to watch Chrissy's confident and matter of fact responses to their questions and to play right along with the others, just like my Adria.

Thank you, PBS.

For years, I think that Sesame Street has done a good job at incorporating children in wheelchairs or with down syndrome into their shows. It's wonderful to teach children at a young age to welcome all types of people into their lives, even if they are different.

I would ask and encourage you to watch this episode with your young children and see what type of dialogue it creates. The show does not say that Chrissy has spina bifida, but because that is the most common permanently disabling birth defect, I highly suspect that this show was inspired by a child who has it. Though Adria does not need crutches to walk, she did have to use a walker for a year and many children with spina bifida do need the crutches or other assistive devices in addition to braces.



I have a feeling we'll be singing that cute little song a lot, "In some ways we are Different, but in so many ways, we are the Same."

Part 2 - The Last Seizure...IN HIS WORDS

Today, my husband continues to share what he endured during the last seizure on March 8. This was the worst he had experienced, and the emotional fall impacted him for months.

This was the seizure that ultimately drove us to leave our home in a charming Richmond suburb and return to the support of family last April.

Daddy and baby Johanna in our Virginia home about a month after the last seizure.

IN HIS WORDS

I think two of the greatest desires in having a life struggle are to want people’s sympathy and their understanding. But when your affliction is something you can’t really explain and people wouldn’t really understand it if you could, then it’s next to impossible to achieve either one. It took me a while to figure it out, but I finally gave up on the fruitless pursuit of other’s sympathy and understanding because I realized that the fruit of not getting it was self-pity. Self-pity is the antithesis, the kryptonite of my ability to recover and carry on after a seizure. Now back to the seizure.

As I regain consciousness, the scene is one that has become all too familiar. I am strapped to a stretcher in the emergency room of a hospital surrounded by figures in hospital garb and the EMT unit is still hanging around. The screams have ended, but I am crying uncontrollably while the nurse is asking me questions to see if I am fully conscious yet. I am able to answer her questions. The year is 2013, my full name is Adrian Michael Seely, unfortunately Obama is president, and the list goes on.

As I begin to gain some semblance of control, the same question as always that has yet to be answered and I have yet to stop asking, penetrates through my seared, pained filled brain. WHY!?!?!?!? Especially, why NOW? Since moving to Richmond I have been happier than I have been for more than fifteen years. I was positive that this was where we were going to put down roots, and now this? Also, why was it so BAD? The seizures have been getting progressively worse but this one felt like it ripped my soul from my toe nails through my ears while dislocating every joint on the way. Julles is standing beside me holding my hand with her tears of fear, confusion, loss, and sympathy mixing with mine.

By now some of you may be wondering if this can really be all that bad. It is and worse. For this particular seizure, it took five fire fighters and at least two paramedics to fight me onto a stretcher. (The post seizure stage is called the postictal state and during that time I am basically sleep walking with aggressive tendencies and super human strength with no control over or memory of what I do). The mobile x-ray team at the hospital who saw me come in refused to come do my shoulder x-rays, and when I was discharged they cleared the hall before I walked out. In other seizures I have dislocated shoulders, broken my foot, gone into A-fib of the heart, and repeatedly covered myself and the room in blood. That is all bad but what makes it worse is when Julles leaves for work and we spend every second of that day wondering…….is it now? And that is the true reason I have decided to tell my story, because of the consistent way God has covered us in the face of constant threat and danger. The twist in the story is that I am the constant threat and danger.

- ADRIAN

Mini Adventures All Week Long

Watching a baby llama, experiencing a sunset over water, four-wheeling through a field, and talking to a one-legged man are just a few of our mini adventures this week.

We don't sit still too well, so when I have a weekend off it's go time! My new work schedule is a bit strange, but it actually works great for us. I have off every other weekend and every Tuesday.

The previous two Tuesdays off were largely consumed with doctors appointments; it was high time to have fun. In the midst of it all, we found ourselves very thankful for the opportunity to be back in Delaware and spending time with many people we love. Five months ago it was a crazy time around our move back, but we are settling in nicely and enjoying these mini adventures:

Saturday - I brought the girls with me to a Women's Brunch at our church, Hickory Ridge. What a great time to get together and chat with about 25 other women; we are blessed to have a good group of young moms and ladies in the church. I missed these types of gatherings when we lived in new areas. That night, Daddy offered to watch the girls so that I could go out by myself for a time of singing and worship at church called Ignite. The worship band hosts this special night once a month, but this was my first opportunity to go. There is power and encouragement in joining together and singing songs like, "There is Power in the Name of Jesus to break every chain...Break every chain." The chains of this life can be broken in His name.

Sunday - We took advantage of gorgeous fall weather to have a family outing at the Salisbury Zoo 45 minutes south. We love going to zoos and miss the fact that we were only 15 minutes from the Indianapolis Zoo and the Metro Richmond Zoo at our previous two homes. Though Salisbury is not nearly as elaborate as those two zoos, it is free and it is fun to see the animals, especially the pink flamingoes and baby llama or alpaca - whatever it is. Plus, they have a Fantastic playground! Afterwards we made a quick stop at the Salisbury Mall to get new fall jackets for the girls...we also miss all the shopping options we used to have within a few minutes of our home. Guess you can't have everything you want in the same place!

Our Sunday fun didn't end there. Aunt Leona and Uncle Gary invited us over to dinner at their home. We ladies took the four-wheelers out for a spin around the farm. I haven't ridden one of those in years! Johanna rode with me and loved the feel of the wind in her hair. However, we got into trouble when she figured out how to push the trigger on the handle that made the four-wheeler accelerate. Look out people, this 22 month old likes to GO! We finished off the night roasting marshmallows around the fire pit.

Monday - Our adventures this day weren't nearly as exciting, but still very valuable. The four of us were up at the local elementary school by 9:00 a.m. for an IEP meeting with Adria's Pre-K teacher, three other school officials and her physical therapists. Since Adria has delays that cause her to physically have trouble keeping up with her peers in the school setting, she can receive services through the State of Delaware, which has been the case since her birth. Her official delay is titled "Orthopeadic Impairment," and we spent over an hour that day discussing her development goals for the year, which I will detail another time.

We left immediately from there to drive 45 minutes north to Lawall Orthotics & Prosthetics in Dover for an 11:00 a.m. appointment to pick up a new pair of leg braces for Adria. She just got a new pair of DAFOs earlier this summer, but she's been so active that her orthotics actually tore at the ankle and we had to order a new pair a couple weeks ago. While she was there trying them on to make sure they fit appropriately, a middle aged man with one leg was also trying out his new leg prosthetic. He complimented her on her pretty braces :)

We were able to keep that meeting short and drive back down to Bridgeville just in time to drop Adria off at Pre-school for her 12:30 p.m. start, drop Daddy and Johanna at home, then run to work in Greenwood for my 1:00 p.m. appointment where I collected a deposit from a new client to get started on a home soon. What a morning! We finished off the day with a quick trip to Killens Pond for a pleasant walk through the woods with my Aunt Bon, and Ade got in some disc golf time.

Tuesday - We planned an exciting day off with Granny and Grandad this week. Ade's parents joined us for a ride across the Delaware Bay on the Cape May - Lewes Ferry. We hadn't all been on the ferry in years, and our little girls had never been, plus there is a great zoo on the other side. It was quite chilly and windy for our 9:15 a.m. departure across the 17 mile stretch of water, but it warmed up after we disembarked in New Jersey an hour and a half later. We thoroughly enjoyed our adventures at the Cape May Zoo, which included seeing a three week old female giraffe and about 500 other animal species and of course, more llamas.

We drove around to explore the boardwalks and shores of Wildwood and Cape May, which were surprisingly deserted just a month after the busy summer season has ended. We enjoyed views of the Atlantic Ocean from a restaurant on the beach and played in the sand before returning for our 6:00 p.m. ferry departure back to Delaware. The clear, blue sky made it easy to experience a lovely sunset on the bay on our return trip. It's really the best way to watch the sunset over water on the East Coast.

Wednesday - Back to work for both us with Ade helping my Dad install plumbing on a home in the community where I sell and Mom watching our girls (keeping it all in the family)! It was a disappointing day with a call from a client that I've been working with so hard and felt so confident they would build with us, telling me they found a "better deal". After six years in the roller-coaster industry of new home sales, that happens all the time, but there are certain instances when it still shocks me. Fortunately, I had a great meeting at the end of the day with a sweet family who is moving forward and ready to build asap!

Thursday - Just a normal day for us, except that Adria had a special field trip at Pre-K where they walked to the local library. Parents were invited, but I couldn't make it due to a work appointment and Daddy did not feel at peace about going alone with her. The risk of a seizure is ever present and would be traumatic for a group of 4 year olds. Thankfully, my Dad a.k.a. Grandpa was able to fulfill Adria's wishes to have someone join her for the outing.

The afternoon held a surprising amount of drama at Greenwood's only major intersection where our main office sits. A major car accident occurred by the bank that had the medevac chopper called in for the man in a pick-up that had slammed into a larger truck. Then, the police were frisking down three people right outside our front door a few hours later. That's a lot of drama for one day in our tiny town!

Friday - Who knows what adventures today will hold? After this busy week, I'm hoping for a low key day as I prepare to work the weekend at the model home. It's been fun but kind of exhausting.
Adria just woke up and asked me, "Mommy, where are we going tomorrow?"

Good question, sweetie.

The Last Seizure...IN HIS WORDS

My husband is an incredible man.

Though I have walked with him through the valley of the shadow of death, I know that I can never fully understand what he has endured these last few years. His life truly changed when the seizures began. They have robbed him of so many things. He has wanted to give up after they happen, and sometimes he had to for a time. But, he does get back up again. Even if it's a forced effort one day at a time.

He has decided to begin sharing his story from a very personal perspective that I cannot give. He will occasionally be contributing posts about how epilepsy has impacted his life. It made be hard to understand some of the things he shares, since the type of seizures he has are not that common or easily comprehended when you don't experience them first-hand. But, I am so glad that he is wanting to do this and hope that he can have continued healing in the sharing.

His first post is about the most recent...and most severe...seizure that he experienced. He said it was difficult to write this; even the memory had him shaking.

Daddy and his girls on Father's Day 2013

 

IN HIS WORDS:

I believe that everyone has a story and that each one is unique and important in its own way. I believe in sharing stories and learning from others stories but I don’t believe in comparing stories to see who has had it the “worst.” So when I tell others that I have seizures, and they begin to tell me their story, I usually just listen and offer my sympathy while keeping my story to myself. Now, I am sharing my story in the hopes that some aspect of it may help someone. My name is Adrian Seely, and this is part of my story.

The day is March 8 of 2013 and I am standing in the service department of a Honda dealership in Chesterfield, Va. I am dropping off one of our vehicles to get serviced and waiting for someone to come get the keys and fill out the paperwork for me. And then the lights went out, my lights anyway. The next thing I know I am starting to regain consciousness and I am overwhelmed physically, mentally, and emotionally. Physically my head feels like it is being crushed in a giant vice while my brain is wrapped in a net of high voltage electric wire. My shoulders are being repeatedly stabbed while my entire body is being beaten. Mentally and emotionally I feel like I have walked through the very gates of hell. The sheer weight of pain, fear, and terror that is attacking my mind and emotions is unbearable. I can even hear the screams coming from hell itself. Then I realize that those screams are mine.

It’s forty-five minutes since my seizure started, and I lost consciousness. My seizures last three to five minutes and my postictal state lasts 30 to 40 minutes, the whole time unconscious yet very mobile. Thankfully, they only come every four to six months because each one breaks me down, tears me apart, and steals part of me away. Each seizure is worse than the last and I wonder how many more I can survive. So I cherish each day with my family, with my friends thanking God for opening my eyes to the importance of appreciating the small things in life.

 

 

12 Days in the NICU, so long yet so short

Baby Adria spent the first 12 days of her life in the NICU (Neo-natal Intensive Care Unit) at A.I. DuPont Hospital for Children. Really, we were fortunate it wasn't more because many babies have to stay much longer. For instance, my friend Amanda's preemie little boy was recently in the NICU for 35 days and some of the mom's we met during our time in the NICU had been there for months with their babies.

I ached for them because even just 12 days can feel like forever when that is your whole world. 

Her first three days in the NICU, I was not with her. It was a heart-wrenching experience to deliver my newborn baby and have her taken away from me for days after only getting to see her a few minutes. As I've mentioned before, she had to have spina bifida closure surgery at the children's hospital about 20 minutes away, while I had to remain at Christiana Hospital for a few days to recover from my own surgery.

It confused my body. Other than the piercing pain in my gut from the C-section, my body had no proof that my baby had come out. I had never gone into labor or had a single contraction that I felt, and there were no cries or coos from a newborn baby around me.

While it was painful during those days to be apart, I was comforted knowing I would see her soon. I couldn't help but think of mothers who do not have that comfort... Plus, Daddy was there with our little girl, while my mom offered support to me.

Daddy in the NICU while the nurse tended to Adria

I wanted desperately to be able to give our baby mommy's milk and the early colostrum that they call "liquid gold" for newborns. But, my body did not think it was time for milk yet. I tried to pump every three hours, but during those first few days only a few drops came out. The nurse would still put it in a tiny syringe, and have it taken up to A.I. DuPont Hospital where Ade could help feed it to her.

However, Adria was not allowed to eat anything her first day of life before her surgery. She was not happy about that! She had an IV that nourished her body and was quickly introduced to the Soothie pacifier, which Ade said she sucked on feverishly. That was the start of a special three year relationship between her and Soothie :)

Adria was blessed to have one of the best pediatric neurosurgeons in the world to operate on her back and put the exposed spinal cord back in place. Dr. Benjamin Warf was only at A.I. DuPont Hospital a couple years, but he was there when my baby needed his especially gifted hands and brain. I will share more about this incredible doctor another time.

Baby Adria still sleeping from the anesthesia on the day of her spina bifida closure surgery.

Her surgery did go as well as we could have hoped, and she was able to take formula from a bottle within a day. We were very fortunate that she did not need a feeding tube or oxygen like many NICU babies. There was a 3 or 4 inch area on her lower back wear she had stitches from the surgery, so she had to lie on her tummy only for several days.

She was born on Monday, had surgery on Tuesday, and on Thursday I was released to go to my baby girl. Praise the Lord!

From the time I got to the hospital that day until she was released over a week later, we did not go home. We spent every day in the private room she had in the NICU. We ate meals in the hospital cafeteria, where I was given a free pass for food since I was a "pumping" mother. The only time we left the hospital during those 12 days was at night to sleep in our room at the nearby Ronald McDonald House. Thank you, if you've ever supported that charity! We were able to stay there for less than $20 a night, and it was a blessing even if we could not sleep that well.

Our only break out into the "real world" was a couple times when friends came to visit and treated us out to dinner. We suddenly remembered there was more to the world than our little baby and her hospital room. It was a blessing to have many friends and family come welcome our little girl. They'd have to take turns coming in as only two visitors (including me or Ade) were allowed in her room at any time.

Aunt Leona, who would become a huge help over the years with Adria!

Mommy holds baby for first time without pillow

Ahh, Daddy loves his little girl

Granny Seely falling in love

Uncle Cameron, who is the best gift-giver and ultimate fun

Uncle Aaron, who can always make Adria laugh

Mommy's cousin Clairissa

Gramma Outten loving on her newest grand-daughter

Grandpa Outten gives unconditional love

Mommy doesn't mind the cries

Lovin' her Soothie

Mommy's friend Amanda

Mommy's marathon friend Lori

Mommy's friend Rita

Super sweet Aunt Bonnie

We did not have to stay at the hospital all the time, but we wanted too. Just to sit there and hear her breathing and look at her precious features kept us interested. Plus, doctors regularly came by without notice and had important updates and valuable information about her progress that we didn't want to miss.

She underwent many tests during those 12 days, but the most important were the ultrasound and then MRI of her brain. The ventricles of her brain were slightly enlarged with fluid, so they were monitoring her mild hydrocephalus to see if she would need a second surgery on that before going home. Thankfully, she did not and we were able to bring her home once Dr. Warf determined that her back was healed enough to ride in a car seat.

They also showed us how to catheterize Adria to empty her bladder if necessary, but the tests on her bladder and kidneys did not indicate that we would definitely need to do that.

Though the days felt long sitting in that hospital room, we couldn't imagine driving home an hour and a half away and leaving our precious baby. We so appreciated the great care that she received at the hospital, and it gave me the opportunity to rest and heal from my surgery as well. But, when they gave us the okay to be released, we were more than happy to be packing up and heading home with our newborn!

Time for your Check-up. Love my little shortie!

Wow, this is rare. Writing while enjoying the breeze on my back porch in the middle of the afternoon. Ahhh, savor this moment.

It won't last long. Johanna is napping, Adria will get off the bus in 45 min., and Daddy just walked out here after a brief nap, that I apparently interrupted while getting the computer. Oops.

We had a busy morning and were up and out of the house by 7:30 a.m. for doctor appointments.

Daddy had a check-up with his local primary care physician at 8:15 a.m. and Adria had her 5 year old well visit at 9:50 with the pediatrician at Nemours duPont Pediatrics, both in Seaford.

We even had time to squeeze in a "healthy" breakfast at Dunkin' Donuts.

Daddy's appointment was gloriously mundane, aside from the sting of a flu shot. No seizures since last visit, blood pressure low, heart rate good, and he even lost a few pounds.

Ade went to Dr. Victor Dejesus before we left Delaware in 2010, so he was there when the seizures first started and it's been an easy transition since our return to the state five months ago. Dejesus is also quite impressed with the clarity and thoroughness of the notes from our visits with Dr. Litt, the neurologist at Penn Epilepsy Center.

That's always good to hear. Finding a good doctor can be like trying to find a good mechanic, you take a risk and may not know he's bad until something gets really screwed up! Some of you know what I'm talking about.

With 40 minutes to kill before Adria's appointment, we made the mistake of going into Wal-Mart and emerged with a much emptier bank account. I tell ya, those diaper boxes will get you! $85 in just diapers and wipes for the girls. Their little bottoms are picky and tend to be happiest with Huggies brand diapers, which I'm quite sure are the most expensive on the shelves. But, I digress.

On the way to Adria's visit we sang, "We've gotta check your ears, check your eyes, find out how much you've grown. Time for your Check-up!" How many of you mom's out there are loving the new Disney Junior series Doc McStuffins? She's a cute little pre-school doctor who operates on toys. My girls are big fans, and it's especially helpful if you spend a lot of time with doctors.

Adria wearing the Doc McStuffins outfit that Aunt Leona gave her for her birthday.

At the doctor's they took all of Adria's vitals with her shoes and braces on, since she can't really stand still on a scale without them.

• Height = 38 1/4 in. (3' 2.25")
• Weight = 41 lbs. 8 oz.
• Blood Pressure = 76/56
• Eyes = 20/30

She's healthy and doing well with her weight in the 65th percentile for her age and her height less than 1 percentile. Basically, our sweetheart is a little short with some extra cushioning :)

That's no surprise, as it is fairly typical for children with spina bifida to be shorter than their peers due to the lack of muscle definition in their lower limbs wich can hinder growth somewhat. Also, their decreased mobility means that they are not running around as much as other children and burning off as many calories. But, we do try to account for all of this and give Adria a balanced diet and plenty of activity.

Before the appointment, Adria was quite worried that she was going to have to get a shot today. I really wasn't sure. I hate to admit this, but with all the moving and changing doctors, and my lack of organization skills, I did not know if she was up to date on the immunizations that they require for school or pre-K. Turns out that she was not. Sorry my little darling.

It was just one shot with two immunizations in it, but boy did she scream. Ugh, this is so not fun for any of us. Adria asked, "Mom, did you have shots when you were my age?" She seemed comforted by the fact that I did and that Daddy got a shot today too.

Before we left we were talking with her pediatrician about how much she likes pre-school and how her bus drivers enjoy her chattiness on the bus ride. Then Dr. Cole stated almost matter-of-factly, "Who doesn't love her? She's fabulous!"

I couldn't agree more. Now, I had better go. Johanna woke up and wants to play on the computer and big sister's bus should be here any minute.

Adria's First Week of Life Outside Mommy's Tummy

Last Sunday we celebrated Adria's fifth birthday, and I shared a blog about my thoughts on the day she was born.

Today, a week later, I'm posting the email that I had sent out to friends and family from the NICU at A.I. DuPont Hospital the week after her birth. Some of you might remember reading this five years ago!

I found that the easiest way for me to tell her story, would be to write it from her perspective. Through the innocent eyes and voice of a newborn. Who knows what she was actually thinking, but I decided it was something like this...

Day old Baby Adria before her back surgery on Sept. 9, 2008

Baby girl after her spina bifida closure surgery.

 

Adria Mychelle Seely… My First Week of Life Outside Mommy’s Tummy

(as told through my mommy Julleanna Seely, since I’m not much of a writer yet J)

On Monday I celebrated my one week birthday! For the first time I was able to lie on my back that day and be held by my parents without having a hundred wires plugged in…ok, it was actually only 4 or 5 wires but still they cramp my style.  

My arrival into the world came with a bit of fanfare, having over a dozen doctors and nurses in the delivery room – half for mommy and half for me. I was delivered at Christiana Hospital on Sept. 8 at 3:58 p.m., a beautiful, healthy baby girl weighing 6 lbs. 15 oz. and measuring 19 inches long. So many doctors were there because I was born with spina bifida, a birth defect that occurs when a baby’s spine fails to close during the early months of pregnancy.*

A few hours later, I was transferred to the NICU (Neonatal Intensive Care Unit)  at A.I. duPont Children’s Hospital in Wilmington. On Tuesday afternoon a pediatric neurosurgeon performed surgery to remove the spina bifida sac on my lower back and put my spinal cord back in place. Thankfully, the location on my back is relatively low which means that I have a good chance of being able to walk. In order for my back to heal, I had to lie on my stomach or side for the first week, but now I’m healing so well that I can be held or lie on my back!

Daddy has been here with me every day, but I did not get to see Mommy again until Thursday morning; she had to stay at the other hospital to recover from her c-section. When I saw her for the first time since my birth, she reached into my little incubator hospital bed, and I wrapped my tiny hand around her finger. She cried a lot when I did that.

So far, doctors seem impressed with my recovery and the amount of movement in my legs. I really like to kick and squirm a lot, which makes Mommy and Daddy very happy. The doctors think the only place I don’t have much sensation is the bottom of my feet, and one nurse said I have more movement than any other baby with spina bifida that she’s seen in her seven years working in the NICU. Mommy says that I’m doing so well because so many people from all over are praying for me.      

While at the hospital, my parents help the nurses give me baths, change my diapers, and feed me. They love to sit and watch me, hold me and kiss me ‘cause I am crazy adorable with my full head of dark brown hair and little tiny baby features that are so perfect. They really hope to take me home soon, and I can’t wait to see my bedroom and try on all my pretty outfits. The main thing we are waiting on is an MRI that I am scheduled to have on Thursday to look at the fluid around my brain. A majority of babies with spina bifida have hydrocephalus and need additional surgery to remove the fluid. I am really hoping that the results from the MRI are good, and I will not need that surgery.

So, thank you so much for praying for me and I hope that you will continue to do so. I will need to have many more tests and physical therapy over the next months and years of my life and there are many unknowns about some of the physical challenges I will face, but I am a very active little girl with a good appetite and a strong cry so I think I will continue to do well.

With much love and a few hiccups, cries and coos,

Adria Mychelle Seely

*Spina Bifida:  Also known as Myelomeningocele, occurs in about 7 out of every 10,000 births. There is no known cause but because it effects the development of the spinal cord, there are a variety of challenges that can arise. This includes various levels of paralysis, mainly in the legs; bowel and bladder problems; hydrocephalus which is excess fluid around the brain; and sometimes learning challenges. Most children with spina bifida have nerve damage that affects their ability to walk, and often require the use of leg braces or a wheelchair. No two cases of Spina Bifida are ever the same.

Daddy gets to feed baby Adria

 

 Mommy sees her baby for the first time after 4 days apart

The MRI and EEG results are in...and a grand Philly lunch

This summer we have traveled north about 1.5 hrs to Wilmington and Philadelphia at least five times to doctor appointments for both Adria and Daddy.

Now that we have moved back to Lower Slower Delaware - a land of farmers, chicken houses and some decent coastal beaches - our options for local healthcare are more limited, but fortunately we are within a couple hours of some of the country's finest medical centers.

Alfred I. duPont Hospital for Children and Hospital of the University of Pennsylvania are two such facilities where we are privileged to receive medical care. During one visit in July, we spent the morning with Adria at the children's hospital, then dropped her off with Ade's cousin and his kind family, while we went up to Philadelphia for an MRI.

It was a long day of appointments, especially when we ended up having to wait three hours for Adrian to get his MRI. In case you are not familiar with this procedure, MRI stands for magnetic resonance imaging. According to Penn Medicine, it allows imaging of the interior of the body without using x-rays or other types of ionizing radiation.

In Ade's case, it shows fine detail of every part of the brain in an attempt to locate tissue damage and a source for the seizures. He had an MRI done in early 2010 after his seizures first began. No tissue damage or abnormality was apparent at that time. The MRI machines are huge and loud, but you have to lie in a confined space for quite a while as the testing is done.

The tests are expensive, but we agreed that it was a good time to have it done again, since it's been over three years and the seizures have worsened. Plus, we just started going to the Penn Epilepsy Center this summer, and they needed to establish a baseline for treatment. After three years of seeing four different neurologists, who all did their own different tests and med changes, the last one we had in Virginia finally said that he was limited in the help he could provide and he would refer Ade to a specialized epilepsy center at a major hospital.

That's basically how we came to see Dr. Brian Litt with Penn Medicine, who ordered the study. He's a great doctor, who genuinely desires to help improve our situation.

One of the reasons it took so long for the MRI in July was because when Ade was prepping for his MRI, the nurses and techs became so nervous when he described what happens when he has a seizure that they were calling security trying to be prepared just in case one happened during the study. In the end, they figured the best solution would be to have me stay in with him during the MRI, so I could tell them what to expect. I guess it just shows, that even with highly trained medical professionals all around, we are responsible to be somewhat of "experts" regarding our own health.

We went back up to Penn Epilepsy Center in Philadelphia on Tuesday to talk with Dr. Litt more about the results of the MRI and the EEG that had been done earlier.  We were thankful to be there just days after passing the six month mark since the last seizure, it's encouraging that we've made this far without another episode.

Still, we were anxious to hear his feedback in hopes of learning something new, yet hoping that nothing major had shown up.

Nothing had. His brain looks healthy on the MRI, no obvious abnormalities or damage. Ok great, I guess...

The EEG study, officially called electroencephalogram, measures and maps brain activity. Ade has had this done several times before, and even had a 24 hour study where he had to sleep with these wire feeds glued to his head. Litt said the EEG study he had in June showed increased activity in the right temporal lobe and slight focal displation. This indicates that a minor brain malformation is possible, but it's likely microscopic.

Litt went on to say that the erratic behavior Ade displays during a seizure event would indicate that source of the seizure activity could be coming from the right frontal lobe of his brain. We have heard this before, as this area of the brain largely controls our behavior.

Just because tissue damage is not evident in the MRI, does not mean there was never an injury. It could have happened when he landed wrong jumping in the pool as a boy or any similar incident that resulted in a headache.

The image below is from the Brian Injury Association of America website, showing the areas of the brain.

I found an interesting article about frontal lobe injuries from the Brian Injury Institute.  It says, "Because your emotions are affected, the symptoms you experience from frontal lobe damage may manifest causing you to become impulsive or assume risky behaviors...The right frontal lobe is more involved with negative emotions, while the left frontal lobe is more involved in positive emotions....Because frontal lobe damage affects most aspects of behavior, mood, and personality, you will have to adapt what was previously basic human behavior, such as the relationship with oneself and others."

Well, at least that gives my husband an excuse for being a hot-head :) In all seriousness, it is helpful for me to read and learn more about it, so that I can be more understanding when things get crazy.

There have been many times when I have reassured myself with the belief that what he was saying or doing was not a true reflection of my husband's thoughts and feelings. It was altered by how the seizures impacted him. Often in the days and weeks before and/or after a seizure, this apparent difficulty in controlling impulses was heightened.

There is more that I have found and will elaborate on at another time, but suffice it to say that while we did not learn anything majorly new at this appointment, we are starting to piece some things together based on the studies and feedback that are leading toward a greater understanding of what it happening.

For now, he just had some blood work done following the appointment to make sure that his medicine levels were good, as there might be some slight adjustments in the amounts.

We finished up our time at Penn Medicine around 1:00 p.m. and decided that we should make the most of our trip to Philadelphia without children. Just a few miles away we parked near 17th and South Streets and happened upon an elegant restaurant called Davio's Northern Italian Steakhouse.

Since it was later in the lunch hour, the restaurant was nearly empty but we felt slightly underdressed for the formal atmosphere. Not a problem though. We thoroughly enjoyed this fine dining experience, and though it was pricy, we could splurge on the lunch menu.

The waiter greeted us by our last name and when he said the day's special, I only understood the part about scallops. I had no idea what that other stuff was, but why not try it? It was a delicious three-course meal with a veal and mushroom appetizer, seared scallops with pureed sweet potatoes for the main course, and a vanilla custard-like dessert... All amazing! Ade savored his salmon dish and cheesecake too.

Sure, this Sussex County girl was a bit out of her element, but I could adapt. If you're facing tough things and more doctor's visits than you care to count, ease the load and take time to celebrate life and enjoy lunch with someone you love. It helps!

The Purple Princess Party

Watching our baby girl turn 5 is a big deal. It's an even bigger deal when it's her first birthday, since she turned one, where we live close to many family and friends again.

Naturally, we had to celebrate in style. The Purple Princess Party was a grand event that featured eight adorable little princesses! The celebration was held on Sunday, Adria's actual birthday of September 8.

Eight adorable princesses attended the Purple Princess Party - Birthday Girl Adria is second from left. 

Aunt Leona graciously watched our two princesses in the early afternoon, while Mommy, Daddy, Uncles Cam and Aaron, and Grandma and Grandpa worked hard to decorate the back yard. I was really appreciating the fact that the home we now rent sits on a 3/4 acre wooded lot, giving us plenty of space for the festivities.

Due to the excessively girly theme, the only little boy invited was a princess' younger brother who actually turned one that day! Sorry, my dear friends with little boys, maybe next time we can do something for them too, I just know that my nephews don't appreciate the "prince" role that much :)

Adria and the token little man at the party, who was celebrating his own first birthday on Sunday! 

We kept the girls busy with a princess glasses craft, Crown the Princess game, swingset and sandbox, dinner and cake, and a castle piñata that an older princess had to help break. The princesses got along well and seemed to enjoy the "castle" we built with a canopy tent, streamers and wrapped diaper boxes for the entrance.

They eagerly joined in crowning the princess and hitting the piñata, all except for the birthday girl that is. Adria said she was afraid to play and wouldn't even try without the blindfold. I wondered later if she may have been unsure with her footing and afraid to fall in front of her friends? That's not usually a concern, but who knows. She did love the glasses, cake, loads of presents, and most of all, playing with a bunch of princesses!

And of course, no party is complete without a little drama. Just as we were getting ready to pray and bless the food, my little Johanna starting gagging on some watermelon and then spewed all over us both. Yeah, it was disgusting. But, we just stepped inside and changed while the guests got their food...I hope no one lost their appetite! Fortunately, Jo-Jo was only temporarily slowed down and soon was back to running around everywhere, like she does.

After that episode, I found a few minutes to sit down and grab a bite to eat before cake and presents.

My mom really gets into her grandkid's parties. She made the party invitations, the Princess for the game, and this great castle cake.

The weather was perfect and all the little princesses seemed to have a good time. Even though Adria didn't want to participate in the games and Johanna barfed on me, I would say it was a great party and well worth the effort. 

Finally, as the sun was setting at the close of the party, I was able to steal away my little 5 year old for a moment together. How I love this amazing princess!