When Gabrielle had her first evaluation for North Carolina’s Exceptional Preschool Program back in January and her IEP was being developed I stated that my main goal for the year was to get my sweet Gabby potty trained. Over the last several months I periodically stuck a resistant 3 year old on the potty but we never had any success. As summer approached and with it fewer responsibilities and commitments I vowed that potty training would become my priority. I would start on this endeavor the week after constraint camp ended.

So as I began meeting other families at camp, many wonderful families who also had a child with hemiplegia, I inquired about approaches and success in the potty training arena. I was so encouraged by their stories. They all had positive outcomes. They all seemingly began with scheduled potty times and it gradually became a habit. I was ready to get started!

I armed myself with a few good children’s potty books and prepared myself to do battle. The first few days I spent an inordinate amount of time in the bathroom. (So glad we recently repainted the pepto bismol pink bathroom to a more soothing shade of blue.) We would be at that crucial juncture when you know the child’s bladder is ready to explode and you don’t want to risk taking them off the toilet for fear of missing the long awaited opportunity. My husband returned home from work one day and my eldest child announced, “Mom has been in the bathroom for like the last 3 hours!” Gabby would be trying to remove herself from the throne as her anxiety mounted with the sensation of a full bladder. I would be restraining her, distracting her with books and songs, and then finally she would relax her muscles. Voila! She would pee on the potty.

It only took a couple of days for Gabby to learn to control the muscles so that now when I sit her down she can go in under a minute. Gabby has not had an accident in a couple of weeks. She is even staying dry during nap time and through the night.

We went to Walmart, as promised, to purchase Elmo and Abby underwear which Gabby has been sporting ever since. Initially Gabby refused to wear clothing over the undies because she wanted to flaunt them, proudly parading about the house. Now she is once again open to wearing clothing and she tells me “Mommy, potty.”, when she needs to go. Then we bust into song together:

I’m off to the potty.
No more diapers for me!



I feel great,
I am proud of ….ME!

This week Gabrielle is attending an 8 day constraint induced therapy camp organized by Holly Holland, an occupational therapist at UNC, Chapel Hill. Here is a short article which describes her motivation and vision for the camp.

Today is Gabby’s fourth day and I am so impressed with the effort being put forth to help kids with hemiplegia (paralysis of one side of the body). There are 33 children here this week who struggle with hemiplegia. The hemiplegia in most cases resulted from a stroke although a few are the result of brain malformations, surgery, or trauma. Every child was casted ahead of time and a bivalve cast was made for the unaffected arm. This cast is worn each day on the “good” arm to necessitate use of the affected arm during countless camp activities. Each child is matched with a “helper” who in most cases is an OT/PT student. The campers are broken down into age appropriate groups and then each group rotates in and out of different rooms where activites are organized to facilitate use of the hemiplegic arm. Several of the camp days incorporate a specific theme like “space day” or “luau day” and then all of the activites and snacks revolve around this theme. Many parents and therapists are here volunteering throughout the day helping with campers or prepping crafts, snacks, and activities.

Camp runs for 6 hours each day and the first day I was worried it would be too much for my little Gabby who still enjoys an afternoon nap. One hour before quitting time I was becoming a wreck wondering how she was surviving. I was afraid to check-in on her knowing that if she saw my face that would be the end! Just when I was most panicked a kind grandfather of another camper came by and said,”I just met Gabby and she is delightful!” “You mean she’s doing okay?!” I responded. “Oh, she’s doing great!”, he assured me. Gabby has continued to do well thus far. She was a bit hesistant to leave my side this morning because I think she’s wiped but once she saw her “buddy” Lindsey she came to life. Lindsey has been so wonderful with Ms. Gabby. She is so full of life, beautiful smile, energetic, and bubbly. The perfect match for my sweet girl.

Each day at 3:00pm the little campers ages 3-10 come marching down the hall with their helpers, beaming with pride. My eyes well with tears as I watch each of the proud campers find their way to Mom or Dad presenting them with crafts and doodads from the day. Each of these children and their parents chosen to shoulder special challenges and fighting their way to succeed.

Here is a picture of Gabby with her super duper student therapist Lindsey:

Constraint Therapy video from UAB

Gabby has been doing wonderfully! She is stubborn, determined, obstinate, opinionated, and strong-willed! A very welcome change from her once lethargic existence. She continues to love school and is better able to share some of her experiences when I pick her up. She especially likes to report any children that happened to receive “time outs” that day, herself included.

She continues to love working with Betsy her PT at Raleigh Neurology. She looks forward to “playtime” with Betsy. Gabby was recently fitted for a new pair of SMO’s (braces). They seem to give her much better support preventing the left ankle from rolling inward. Initially I encountered some serious resistance every time I tried to put the new braces and shoes on Gabby’s feet. She would literally sit there crying for 20 minutes and refuse to stand. It is difficult to know whether the braces hurt in this situation or she is just opposed to trying out something new on her feet. Turns out it was mostly the latter. Once Gabby realized these braces were sticking around she accepted the change. She wore them all day at the zoo last week and walked around for hours. She did have a slight rub mark on her left leg but nothing too serious.

Gabby was recently chosen to participate in a restraint camp for children with hemiplegia at UNC Chapel Hill. It begins June 12th and runs for 7 days. Her right arm will be casted for 6 hours a day and she will work one on one with a therapist to see how much function she can regain in her affected left arm. We are mostly hoping that Gabby will one day be able to use her weak arm as an assist to help her right arm do many of the two handed tasks required in a two handed world. I am very excited to see how this goes!

Developmentally, Gabby continues to make progress. She is able to name and identify the letters of the alphabet. She knows her colors. She is counting up to about 15 but is not always able to accurately count a group of objects. Gabby’s speech is definitely exploding, though I still struggle to understand her at times especially out of context. One of her favorite sentences right now is, “I love you soooo much, Mommy!” Any mom, of a special needs child especially, knows what an amazing gift this is! Potty training is still slow going. She has gone on the potty multiple times but I’m always the one taking the initiative and insisting that she try to go.

We recently went to the zoo and Gabby enjoyed herself immensely! She walked around the huge park so independently and self-confidently. She squealed with excitement when she spotted an animal she recognized and she studied them intently. She is still talking about all of the animals she saw and reminds me daily that the “lions sleeping, Mama”.

We continue to blissfully accept each seizure-free day we are given knowing every one is a gift from our heavenly Father. To walk without the burden of daily seizures resting heavily upon our shoulders is something I didn’t expect to know again. I hoped to be released from the shackles and to feel the weight once again lifted yet I didn’t know if we would be given the opportunity to feel this free for a third time. The joy I experience when my mind begins to wander, to dream, to hope for something beyond seizures is indescribable. Lord God, Thank you! Thank you for this precious time, these care free days, when we once again feel like dancing. And yet I know many who still carry this awful burden down a path with no end in sight and I pray Lord that you would carry them and deliver them from the shackles, that they may also know joy again. Joy that transcends all suffering and reaches to the very core of their being so that they too may dance again.

Have you ever come up with plans for the family that sound really good on paper and then somehow in the implementation phase something goes drastically wrong, expectations are crushed, and the fun outing turns into something completely different? Every time we return to NYC for medical reasons we come up with a new plan of attack to avert disaster. A new approach to beat the city that always seems to beat us. We develop a plan in which a family of eight can visit Manhattan in an economical, timely way, and accomplish the objectives of meeting with several specialists while still smiling and having fun. Perhaps our goals are unrealistic, too ambitious. Nevertheless, each time we remain optimistic as we make the arrangements for our trip into the Big Apple.

This past week we once again devised the perfect plan. The plan that would avoid multiple parking tickets. The plan that would circumvent astronomical parking fees for large 12 passenger vans. The plan that would assure no late night rides alone through the Bronx. We will take the train in from Connecticut! The kids will have a blast and it will be so relaxing. We won’t need to worry about driving and parking in the city. We’ll pop in and out of Dr. Devinsky’s office and then we’ll have the rest of the day to sight see, explore, and have fun!

While nothing went terribly wrong it just wasn’t the relaxed enjoyable trip we had envisioned. “Fun” is not the first word that comes to mind when I reflect upon the day trip. Frazzled, hectic, exhausting, are all words that surface ahead of “relaxing” in my mind. We arose between 4:30-5:30 am, ran around like lunatics for hours, and arrived in Manhattan at 1:28pm, exactly 2 minutes before our scheduled appointment time with Dr. Devinsky. We crowded into an 8×10 exam room and dialogued with our favorite neurologist about shivering, anticonvulsants, seizures, and brain waves. Dr. Devinsky felt the 72 hour ambulatory EEG completed in January showed no evidence of seizures or any erratic spiking. This news alone was well worth the morning’s journey. We decided next to continue on a conservative path medically considering Gabby’s history of returning seizures. We will slowly raise her Trileptal dosage as she grows over the next 6 months to maintain her current blood level rather than allowing her to “outgrow” her current dosage. We all agreed we don’t want to rock the boat just yet! Better to ride the rest of the year out with consistent medication levels in the blood.

We left NYU ready to celebrate the good news, relax, and enjoy some ethnic food. We chose an Asian sushi place and settled in for a special lunch. We realized when the food began arriving that Makinley had literally been immobilized for 6 hours straight. She had gone from car seat to train seat to stroller to restaurant bench. It was then that I stopped casually chatting, bent my head to my chopsticks, and began to pack away some serious sushi before the ticking bomb sitting beside me decided to explode.

We escaped the quaint establishment just as our youngest became possessed. She flung her head back and opened her mouth to scream as we crossed the threshold back onto the busy streets of New York. We headed for Fifth Avenue hoping a brisk walk would settle our psychotic baby into a deep slumber. It worked and the next few hours we spent enjoying window shopping, street performers, and unidentified celebrities. The kids expressed an interest in getting ice cream and we began hunting for a good spot. These children deserved some sweet creamy goodness after the adventures of the morning. They had been so well behaved and patient. We stopped for “dippy” (as my husband affectionately calls it) and after the last remnants had been licked clean from every spoon we released sweet Makinley from her stroller for a little exercise. Big mistake! She was everywhere all at once and the very sight of her stroller was enough to contort her face and send her little legs running in the opposite direction. It was then that the dark clouds rolled in and our plans for Central Park were squashed. We stuck “KinKin” in the stroller and fled toward Grand Central Station through the steady rain to catch a rush hour train with a few seats left 4 minutes before departure time. Now we just had to survive the 2 hour train ride, 20 minute walk to the remote parking lot, and the 45 minute drive back to my parents.

We did survive and though we came home exhausted that night it was a completely content and happy exhaustion. The exhaustion you experience when you know you’ve given life your best. When you tuck your children in without regret and then you happily crawl into bed bone tired thanking God that you’ve been given one more day to be together.

I posted the next installment of A Scandalous Story of Love on my blog. This is the last time I will update through Gabrielle Faith so if you have any interest in reading the rest of the story you can subscribe by following the link above to my homepage and finding the subscribe header in the right-hand column. I want to maintain the focus of this blog and consequently will only post Gabby related updates and information here in the future.

Over eight years ago Duff and I moved into our second house in a little neighborhood in Apex. We had two children at the time. Madeline was two and Gavin was one month old. The family that moved in across the street from us, also had two little ones. Their oldest was Connor and their baby Cameron was about a month older than Gavin. It wasn’t long before Connor’s contagious southern accent began rubbing off on Maddie as they played together and she began turning one syllable words into two. I specifically remember the conversation between these two youngsters one particular day. Maddie pointed off into the woods and began to pretend there were “wolfies” lurking in the distance. Connor was obviously not open to this particular scenario and he replied, “Now is not the time for wolfies.” I can also recall the months that followed when LeAnn and I would meet out on the sidewalk to discuss our needy infants and our struggle to fit a shower in much less anything else. It wasn’t long before Cameron and Gavin began toddling up and down the driveways together as we stood nearby catching some adult conversation.

Duff and I only lived in that home for one and a half years. The day arrived very quickly when we packed our things in two trucks, hitched our cars up on tow bars, and headed off to Wisconsin. We fell out of touch as the years passed, even after moving back to North Carolina, until one Sunday afternoon when I received the most surprising comment on Gabrielle’s blog. It was a comment from LeAnn and Ernest. They had found our blog while searching for information about Dr. Grant, a neurosurgeon at Duke. Their son Cameron was also a patient of Dr. Grant. We learned he had recently had a brain tumor removed. He was diagnosed with Medulloblastoma and would be receiving radiation and chemotherapy over the coming months. Cameron was going through his chemotherapy at the same time we were up at NYU having Gabrielle’s three-stage surgery. LeAnn was such an encouragement during that time. She lifted me up on countless occasions with her thoughtful comments, timely bible verses, and inspirational faith. All while her son was battling cancer.

Cameron completed his entire treatment plan and in August 2009 his one year post-chemo scan was clean. Cameron’s scan in December 2009 was also all clear.

Today we received news that Cam’s latest MRI, from this past Friday, showed his cancer has returned and has moved into pretty much the entire length of his spinal cord.

I would just like to lift this family up in prayer.

Lord God,
You are an amazing perfect God. A God of miracles. A God who promises to never leave us nor forsake us.
Lord, I ask that you walk beside this family through this valley and that you cast out all fear. I ask that you give them the peace that surpasses all understanding. I ask that you carry Cameron in the very palm of your hand and protect him from any pain and suffering.
Lord God, I pray in the name of your son Jesus, for complete healing of Cameron’s cancer knowing You are fully capable of this miracle.
Father God please surround this family with Christ’s love. Please reveal to us ways in which we can specifically be helping the Jackson family and showing them our love and support.
Lord may You be glorified through all of this.
In Jesus’ holy name
Amen

Please join us in praying for Cam and his family.

http://camjacksonupdate.blogspot.com/

Below are two of my favorite bible quotes that LeAnn reminded me of during Gabrielle’s surgeries:

“Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go.” Joshua 1:9

The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.” Deuteronomy 31:8

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 http://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.