Category Archive

Gabby started preschool 2 mornings a week and she just loves it! She is in a mixed classroom of about 10 children, some with special needs and some that are typically developing. The first day I dropped her off it was difficult to leave. I am so used to being her mom, nurse, therapist, teacher, advocate, etc that I was uncomfortable leaving her in someone else’s care even for just a few hours. I found myself considering all of the “what if’s”. What if she has a seizure? What if she walks into something because of her field cut? What if she falls? What if she can’t communicate a need? What if she thinks I’ve just abandoned her? I was then reminded that my precious Gabrielle is in the very palm of God’s hand and I immediately felt at peace.

I have been praying all along for very clear direction and that we would have complete peace with our decision. When I picked Gabby up that first day from school her teacher said, “Oh you don’t need to worry a thing about her! She is going to be just fine!” This past Monday morning I escorted Gabby into her classroom as I always do. The children sit in a reading corner with little chairs and read books independently until all of their classmates have arrived. While Gabby was hanging her coat in her cubby several of the children noticed her arrival and began calling, “Hi Gabby!”. Gabby happily replied to their greeting. She then excitedly hopped over to the corner, grabbed a book, and sat in a chair next to a little boy her own size. She turned toward him and began communicating with a bright confident smile on her face. This little glimpse of independence and normalcy lifted every worry from my shoulders and very much lightened my step as I exited the building that morning with a permanent smile on my face.

Gabrielle receives PT and OT while she is at preschool and she also began attending private therapy at Raleigh Neurology once again. We are in the process of getting her casted for new orthotics (SMO’s) since she has long since outgrown her present pair. The orthotics provide left ankle support to prevent the ankle from collapsing inward.

I haven’t yet received EEG results. Seems the data was lost in “never never land” for a while and was just mailed up to Dr. Devinsky in NYC 2 weeks ago. I should be hearing soon. I did get some preliminary feedback from her local neurologist that there did not appear to be any seizure activity during the shivering episode we captured on EEG.

As far as we can tell she has been doing great! She wakes up full of energy and happy which is a beautiful thing to see!

I will keep you posted!
Kelly

P.S. For those of you interested, The next installment of A Scandalous Story of Love is available at KellyOMelia.com

Well I’ve been inspired a lot lately. Inspired by the calm we’ve been given in Gabby’s storm. Inspired by friends walking by faith. Inspired by a book called Crazy Love and another called One Month to Live. Inspired to be more transparent, passionate, and real. Inspired to leave a legacy. Inspired to live without regret.

Today my “Maine Man” (This is how Duff likes to refer to himself) turns 37 and I have recorded the beginning of our story as a gift to him. I am not writing this story because it’s perfect. Nor to demonstrate the ins and outs of meeting a suitable mate. I’m not arguing that we always made smart decisions that I want our children to emulate. I’m writing this story because after being together for 17 years I am still completely in love with this man. A man that God perfectly chose to complete me. I want our children to see how God worked through us in spite of ourselves. I want them to be familiar with the intricate details of how He crafted our story. How He called us, molded us, and shaped us into His image even before we called Him Father.

So, without further adieu, here is the first chapter of our story.

A Scandalous Story of Love: The Beginning

It was 1991. I was 18 years old and a freshman in college. It was orientation week and classes had not yet begun. I was enjoying my new found freedom and headed out to a dorm party with some of my girlfriends. We met a guy named Mike* from NJ over a few beers. He lived in the boy’s dormitory adjacent to our own and we decided to stop by his room later on to say hello. We arrived at his door and knocked impatiently. I had a cigarette in one hand and a cookie in the other. Mike wasn’t around but his roommate, who had stayed behind to get better acquainted with his new computer, came to the door. He reluctantly invited us in grabbing my cigarette and stamping it out with his foot before I entered. Disgruntled, I sat down on the bed which also served as a couch. I began nibbling my cookie to pass the time but was quickly scolded.

“Crumbs! You’re getting crumbs all over Mike’s bed!”

My first thoughts,”Who is this guy? He must be kidding,right?! What an anal retentive loser!”

Turns out his name was Duff and minutes later when Mike returned I didn’t hesitate to tell him exactly what I thought about this roommate of his.

“What is he doing hanging out in a freshman dorm room by himself, the first week of college anyway?!” and “I’m so sorry you got stuck with him!” and “You poor thing!”

On and on I went, sticking my foot way deep into my mouth until at last I paused noticing the smirk on Mike’s face.

“What? What is it I demanded?”

I quickly learned that Duff and Mike had gone to high school together. They had chosen to be roommates. They were not just roommates, they were friends! I retreated that night with my tail between my legs not realizing how many times I would reflect back on the humor of our first meeting.

Freshman year of college Duff and I would spend a lot of time “putting up” with each other because Mike and I began dating. By summer time Duff and I were pals. We enjoyed hanging out together. I loved to get the details about Duff’s latest relationship and I was always trying to find the perfect girl for him, you know someone kinda like me.:) We found ourselves in the strangest of situations together. The sunbathing niece and nephew watching thing. The late night ride in the back of a pick-up truck where we spotted a shooting star, and the 3 mile walk to get corsages and boutonnieres one chilly Friday afternoon . People began to question what exactly was going on between us.

“We’re just friends!” I insisted and sincerely meant it.

“Kell is like a sister to me.” Duff responded to the inquiries.

A short time later we became the focus of a heated debate about girls, guys, and friendships. Our college friend Andy presented his theory late one night to a circle of friends and suddenly early morning classes and exams lost their priority.

“Girls and guys CAN NOT be friends.” he commanded.

“How do you figure?” we inquired.

“Well here’s the thing….”, Andy began, “guys will only be friends with girls they find attractive, as the friendship deepens, the guy eventually wants more and either the girl is willing or unwilling, regardless the friendship ends.”

“Could he be right?!” we wondered. We searched for examples to disprove his theory.

“Well, I suggested, take Duff for example, he is just a good friend of mine and he will never be anything more.”

Andy quickly turned to Duff, “Would you sleep with her?”

“NO! Kelly is like a sister to me.”

“DO you find her attractive?”…… and so the inquisition began and ended in a stalemate as we all headed off to bed.

It would be a month or two later before we would ultimately discover who had really won the debate that night.

The week before Christmas break in college is always an intense one. We had many late nights studying for countless exams. We found ourselves exhausted but exhilarated as the week came to a close. Some friends fled immediately for the solace of home and others stuck around to properly celebrate the culmination of such a week. Mike fled while Duff, myself, and a bunch of our friends stuck around for one last hurrah. We decided to head into Boston for good eats and good brew. Once fully satiated the whole lot of us returned to campus and hung out realizing that come morning we would all be heading our separate ways for a month.

Then it happened. Another girl. Another girl came along that night looking for Duff. She wanted to talk with him. Alone. They went off into another room and shut the door behind them. Whoa! What was that feeling deep in my gut? Something like nervous nausea. My stomach was a flutter, my heart was racing a bit, and I felt a little anger coming into the mix. What was wrong with me?! Why did I suddenly care that Duff was hanging out with some other chic? But I DID care! I was jealous. That was the feeling that was suddenly consuming me. I had to intervene. I had to share my feelings before it was too late. I ran down the hall and began pounding on his dorm room door. No answer. How could I get his attention?! The phone! That was it! I ran back down the hall to a friend’s room and began urgently dialing his number. Brrring, bring, bring, brrrring,……come on Duff pick up the phone! I hung up and dialed again, and again, and again. Finally he picked up sounding a little exasperated, “What’s up? Where are you?”

“I’m next door.”

Duff still slightly irritated, “So,….. why are you calling me?”

“You weren’t answering the door. I need to talk with you right now. Meet me in the hall.” I begged.

I hung up the phone racing down the corridor back to his door.

Duff cracked the door visibly puzzled and still sounding slightly bothered by the interruption. The other girl peered over his shoulder with eyebrows raised suggesting that this had better be good.

“I need to talk with you alone.” I hinted.

“Okay.” Duff turned to face the source of my jealousy and she huffed brushing past me and never turning back.

We retreated back inside the room. I was pacing. I could feel Duff’s eyes upon me as he waited for an explanation. My stomach was in knots. My emotions flitted about between dread and excitement Why was I such a mess?! This was Duff. I was never nervous around Duff he was like a brother to me. Wait, that was it exactly! This could be the end of me. What if I spilled my guts to him, revealed the source of my irrational behavior, professed my love for him, and he simply replied but Kell I could never reciprocate those feelings your like a sister to me. AAARGGH! This could be ugly but here it goes

“Duff, I think I’m jealous.”

“What do you mean?….Please explain.”

“Well, I’ve never really felt this way before but when that other girl came looking for you and then you disappeared together I became an emotional wreck and I couldn’t quite put my finger on what it was that was bothering me and then it dawned on me, I was jealous! I was jealous that you were in here with some other girl, someone other than me. I think I have feelings for you….. I think I love you.”

I don’t recall Duff saying anything at that moment and yet he made it perfectly clear that he felt exactly the same way as he took me in his arms and held me for an obscene amount of time. We talked like that into the wee hours of the morning. Examining our feelings, our relationship, and our future. We were dancing inside with excitement. Filled with energy despite our sleepless night. Happy music playing in our heads and then the song came to a screeching halt.

The serenity that nighttime brings had deceived us. That was the realization we had when morning came. This wasn’t going to be easy. This would be messy. We could hurt a lot of people. We had an entire circle of friends that we’d known since freshman year that knew me as Mike’s girlfriend and Duff as Mike’s friend. We better take some time to think this through over winter break, sort through our feelings, figure out if this was even right. We swore each other to secrecy, packed our things, and left Boston for winter break.

To be continued………….

*Mike’s real name has been changed.

(In case you’re startled by this sudden attempt at writing or creativity let me explain. The idea for this love story came from the Pioneer Woman.
She wrote the amazing love story entitled Black Heels to Tractor Wheels which describes how she met her Marlboro Man.)

We have been enjoying many happy days over the last month. The increase in Gabby’s Trileptal seems to have helped the disorientation and shakiness she was having upon awakening. We completed a 72 hour ambulatory EEG last week but do not yet have the results. We noted one episode during the recording when Gabby was shivering slightly upon awakening. She was still responsive and her diaper had leaked so she was damp. I guess it wouldn’t be out of the question that it could have been some ordinary shivering on a cold morning after just awakening in damp PJ’s. However, once you involuntarily become seizure experts as we have, something like this is definitely considered suspicious. So we will wait and see what her little brain waves look like these days.

Outwardly, Gabby has been behaving in the most encouraging ways. She is counting to ten, identifying letters and colors, singing the lyrics to many songs, using the mouse to navigate websites like www.starfall.com, and she loves “reading” books.

Recently we have taken a much needed break from therapy. Gabby aged out of the Early Intervention program and we are waiting to attend her first IEP meeting next week to find out what kinds of services she will be offered through the preschool program. Unfortunately the preschool program requires that you drop your child off for services unless there is a medical reason that would make it unsafe for the child to leave their home environment. This has been torturing me. I really want what is best for Gabby. I have so many mixed emotions. I guess if money didn’t play a part in any of this I would just hire private therapists to come into the home throughout the day and work with Gabrielle. Realistically this isn’t going to happen. So I’ve begun to consider what we can offer her at home, what we can afford privately, and what the preschool program will offer. I’m praying for very clear direction and that we would have complete peace with our decision.

Enjoying one happy day at a time!

Kelly

Gabrielle and all the rest of us had an amazing Christmas! Gabby loved attending the Christmas Eve service at our church. In fact she was so full of spunk that evening I had to bring her to the back of the sanctuary for a while so we didn’t disturb others. She was calling out the name of every child she saw and saying “hi” to them. Following the service she ran around with the other children and had a ball! You would have never guessed she had been “off” a few weeks earlier.

Christmas morning she received an Elmo Live doll. When Gabby opened this gift she was thrilled. She thought Elmo had literally come over to play with her. Unfortunately, Makinley was equally intrigued by the little red guy so there were a lot of tears when Gabrielle refused to share her new friend. We hid Elmo for awhile when the girls went down for their naps.

Later on in the day Uncle Russ and Aunt Nancy came over which Gabby was super excited about. If you asked her, “Whose birthday is today?” she responded, “Jesus”. She loved singing “Happy Birthday” and helping to blow out the candles.

The following day we celebrated our second Christmas when Mimi and Poppy arrived from CT. Gabby was so happy to see them! She enjoyed having countless books read to her and just being spoiled in general.

I can’t remember feeling more blessed than I did this Christmas.

Gabrielle has recently had several episodes that concern us. A few weeks ago, when I would awaken her, she began taking longer than normal to begin interacting with her environment. She might flutter her eye for a second or swallow hard. My heart would skip a beat as I held my breath and prayed a seizure wouldn’t follow. I began watching her very closely. Last Sunday, I woke her up from a nap and she shivered slightly for a second and I noticed a very subtle shaking of her right arm and leg. My heart sank.

Throughout the week Gabby began asking to go down for a nap only a few hours after waking up. She began taking 3-4 hour naps and acting more tired and irritable. Her appetite has diminished and she has been less energetic and active. We had a little virus in the house so I hoped some of these changes were related to Gabby battling this recent cold. Then yesterday Gabby had two very strange “events” while we were attending a friend’s birthday party. She seemingly fell asleep in a chair while eating her lunch. I grabbed her and she remained like this for a minute or two. She pulled out of it and seemed a a little sluggish and disoriented for a bit. An hour or so later she fell over and instead of getting back on her feet to continue playing she just lay there completely still and her body was rigid when I went to pick her up.

I contacted Dr. Weiner about her recent MRI and everything looks good in terms of hydrocephalus, etc. I corresponded with Dr. Devinsky this AM and he is recommending an increase in her Trileptal, an EEG, and a blood draw to check Trileptal levels. Dr. Devinsky and Dr. Weiner are wonderful docs if you’re looking for a good neurologist or good pediatric brain surgeon.:) They just amaze me with their responsiveness!

I really wanted to write a post about how Gabby continues to soar developmentally. I wanted to tell about how she has beaten the odds. How she has shocked the medical world and amazed the doctors. I wanted to detail her physical and intellectual accomplishments. I wanted the “happy ending” so badly. The fairytale ending where everyone lives happily ever after. But could I really trust myself to write the ending? Little old imperfect me? A fallible human being struggling in an imperfect world just doesn’t seem like the right person for the job. So once again I lay down my pen and remind myself I am not the author of this story.

Just wanted to post a little video footage of Gabby getting down with her big sister Keagan.

I used to sing this song to Gabrielle all the time. When she was 8-10 months old, her brain was continuously seizing and we were waiting to find out if Gabby was a surgical candidate. I would hold her in my arms much of the day, rocking her tiny body, and looking into those big blue eyes. I would begin to sing Jesus Loves Me only I would change the words to Jesus Loves You. Immediately tears would fill my eyes as I reminded my daughter despite all the suffering she was presently enduring Jesus did love her. Truthfully, I was reminding myself. I was convincing myself that a loving God could allow such painful struggles.

Three surgeries and countless seizures later Gabrielle has begun to sing the very same song to me.

Jesus loves me! this I know,
For the Bible tells me so.
Little ones to Him belong;
they are weak but He is strong.

Yes, Jesus loves me!
Yes, Jesus loves me!
Yes, Jesus loves me!
The Bible tells me so.

Today is Gabrielle’s 3rd Birthday and we really do have a lot to celebrate!

Gabrielle is walking.

Gabrielle is talking.

Gabrielle is understanding.

Gabrielle is climbing out of bed when she should be sleeping.

Gabrielle is throwing tantrums.

Gabrielle can hum “Jesus Loves Me”.

Gabrielle can point to all her body parts.

Gabrielle enjoys watching Elmo and Abby.

Gabrielle can dance.

Gabrielle can feed herself most foods.

Gabrielle hasn’t had a seizure since surgery.

Gabby had a very happy third birthday. The thing she enjoyed most was having Happy Birthday sung to her by her family. She has watched the following video repeatedly and she stands in front of the computer watching it and singing along.

We arrived home yesterday evening after spending a week at my parent’s home in CT. I wanted to update before leaving the hospital knowing it would be difficult once I was back with the rest of my crew. Unfortunately, IPhones have some serious issues in Manhattan. I went to update the blog and my phone completely locked up. I was convinced I was headed to the Apple store to trade it in when it miraculously began working again 45 minutes outside the city. Anyway I digress…Gabby is doing great!

Gabby was hooked up to a 12 lead EEG throughout the night prior to discharge. I was told to press the button if I saw any seizures. I said to the nurse half-kiddingly, “I better not see any seizures!” That night I had to press the button twice. My stomach was a pit of hopelessness and then I woke up. Don’t you love the relief that comes when you realize it was just a really bad dream! Just when you find yourself in the midst of complete despair and you have only to open your eyes and the nightmare is over. It was just a dream! Thank you, Lord! Gabby’s EEG looked NORMAL and we have not seen any seizures since surgery.

Gabby has recovered amazingly well. She came through surgery without a hitch. Her incision is healing beautifully. She has her healthy glow back and her endurance, even from last week, has improved immensely. She is eating better than she has in months and is trying new foods.

Gabby still LOVES the song “Big House” by Audio Adrenaline but just today she began requesting a new favorite. I have to admit I’m relieved.:) You can only listen to a song so many times. “Get Down”, also by Audi Adrenaline, is her new favorite. Yes, Gabby likes to rock out and her joy is contagious!

I have found the lyrics to this song to be sooo true. Especially the following excerpt:

In your weakness He is stronger
In your darkness He shines through
When you’re crying He’s your comfort
When you’re all alone, He’s carrying you

He has truly lifted us up and carried us through all of this!

I promise to post some video of Gabby “getting down”.:)

Love,
Kelly

It can be really difficult to get any sleep around here and Gabby looks just exhausted today. She had her drain pulled a short while ago and it required an extra suture to fully close the area. The incision looked good. Gabby tolerated this pretty well and is glad to have the large head wrap off as it was growing hot and itchy. She is presently getting some much needed rest.

Later today we plan to reattach electrodes to capture an EEG overnight. Dr. Devinsky would really like to see how surgery has affected the electrical activity and wants to have a new baseline to direct future medication decisions, etc. Please pray that the EEG would reveal perfectly normal activity.

We hope to be discharged sometime tomorrow. We will then hang out at my parent’s for several days to make sure Gabby is free of complications before heading back to NC.

Gabby amazes people with her personality and disposition even after everything she has endured. People and medical staff continue to be impressed by her resiliency. She taught a nursing assistant her dance to “Big House” yesterday in the hall way. She gave a hug to a very timid child with an infection of the knee. At music therapy, she shared her favorite version of “If You’re Happy and Know It” which is, “If you’re happy and you know it shout Amen!” She was teased by one of the fathers that she probably has a future in evangelism. I’m thinking her work has already begun.

We are surrounded here by people of many different beliefs yet we all share a common bond. We all have a suffering child that we love beyond comprehension. We have all asked the same questions. Why is this happening? Why my child?

Tears form in the eyes of many of these parents as they share their story. They tell about how they came to be on this unexpected journey. They speak about their fears, they wonder how they will endure this, they question where they will find the strength.

I begin to share my story…….and pray that they will one day know the Author. The One who never lets go. The One who knows every tear, wipes away fear, and gives strength to the weak. More importantly the One who gives hope to the hopeless.

Please continue to pray for Gabby’s recovery and for the continued absence of seizures.

Thank you!
Love,
Kelly

Gabby was up and ready to go around 7:00 this morning. She was a bit cranky until she received her Tylenol and then she was ready for walks and wagon rides. Gabby’s walking is much more steady today. She no longer wants to hold my hand for balance and she has actually tried to run a couple of times.

The MRI from the other day looks “perfect” according to Dr. Weiner. He stated that all of the tissue was completely removed and if that was the cause then we shouldn’t see any more seizures. Gabby’s JP drain is still in place and we are waiting for the drainage to become very scant and clear before pulling it out. Dr. Weiner wants to drain as much of the serosanguinous fluid as possible to reduce the risk of hydrocephalus. He shared that a large amount of debris in the CSF can “clog” the flow of spinal fluid in the brain. We plan to pull the drain tomorrow and then wait one more day to see if there is any leaking from the wound.

At this point it is looking like we may be discharged Saturday. There is debate over whether to complete one more overnight EEG once the drain is pulled to see if everything looks normal electrically. I need to speak with Dr. Devinsky more about this.

Thanks for continuing to walk beside us on this journey.
We pray Gabby’s recovery will continue to go well and I’ll update as she progresses.

Love,
Kelly

Gabby continues to do well. She ate all of her mac n cheese last night and polished off another chocolate milk before heading to the playroom in her red wagon to play with a few toys. When we returned she took her medication and settled in to watch some Elmo and Abby Cadabby which eventually put her to sleep.

She didn’t have Tylenol before bed and woke up at 1:00ish with pain, fever, and an itchy hot head. We gave her Tylenol and benadryl and then she said “Eat!”. She drank more chocolate milk and scarfed down at least 6 packages of saltines. I think the steroids are kicking in.

This morning I began giving her a bed bath and she became very cranky and irritable again which I assumed meant she was hurting. After giving Tylenol she was in much better spirits. She ate a waffle, cheerios, and washed it all down with more chocolate milk.

She is presently watching cartoons with Elmo and looks like she’s getting sleepy.

I’ll update more later.
Love,
Kelly

Gabrielle seems to be doing really well today. She went for a wagon ride around the unit and then walked from her bed down to the PICU entrance. When I tried to bring her back to our “pod” she resisted and so we went and hung out in the solarium for a while for a change of scenery.

She was wheeled downstairs for an MRI around 1:30 and they gave her a little sedative to help her lie still for the study. When we returned to the floor she was allowed to receive a regular food tray. She ate a few fries and downed almost all of a chocolate milk. I cut her off fearing she might get sick if she didn’t proceed more slowly. She then fell asleep and has been resting comfortably for the last two hours.

She has had most of her lines removed today and I’m praying she continues to make good progress in her recovery.
I’ll update again tomorrow.

Love,
Kelly

Gabrielle had a pretty good night here in the unit. She rested comfortably with just Tylenol for the pain. We are trying to avoid narcotics as last time they seemed to cause nausea.

We had some friends from North Carolina crash our roof her in NYC which made for a very pleasant evening. They didn’t carry me on a mat or anything (Mark5:1-5) but they did drive all the way to NY to show their support and brought dinner, drinks, and dessert. Thanks Dave and Bobby for showing us the love of Jesus.

Gabby was wide awake at 4:00am after we changed her linen and gave her some medication. She asked for her siblings by name, she pointed to her head wrap and stated she was hot. She saw my iPhone and requested her favorite song. She sang along to the music and fell back asleep with the music playing next to her ear. She waved hi to the doctors that came by this am and is generally behaving in a very encouraging manner.

She will go for an MRI today because they held off on doing one after surgery yesterday.

I’ll update later.
Thanks for all of your comments, tweets, and messages!
Love,
Kelly

Dr. Weiner just came out to let me know they are closing. He said Gabrielle tolerated the entire procedure very well. He said there was very little bleeding. He removed any suspicious tissue that remained. He removed an area in the right frontal region, the amygdala, and a little tissue that was lying over the thalamus. I asked if there were any obvious areas of connection and he said you remove the tissue assuming it is connected. He stated that he aggressively removed any questionable tissue.

Presently they are working on a titanium mesh closure to avoid leaving behind any soft spots like Gabrielle had previously. Surgery should be complete within the hour. She will have a post-op MRI and then head to the ICU.

I’m praising God that Gabby has been safely carried through another brain surgery. Please join us in prayer that she would avoid any post-op complications.

I’ll update later tonight.

Love,
Kelly