Gabrielle Faith

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.

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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.

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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.

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

Gabrielle is walking.

Gabrielle is talking.

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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.

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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.

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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.

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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.

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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.

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