Gabrielle Faith

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!

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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.

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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.

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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!

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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.

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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.

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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.

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