I’m Back!

img_9335I know it has been way too long since I updated this blog. At first, I was just surviving the last trimester of pregnancy with an insanely busy schedule of therapy appointments, OB appointments, and life. Then I was just trying to get back on my feet from my cesarean, an infection of my incision, and breastfeeding woes. Next the baby colic set in which was not a good mix for homeschooling and 7 therapy appointments a week. Listening to screaming for hours a day is exhausting. All of this seemed minor though compared to a day with seizures. Then on February 14th we thought we saw a seizure. It was a very minor trembling/shivering episode that lasted maybe 15 seconds but something nevertheless. We began watching Gabby like a hawk. She had 2 more of these episodes about 2 weeks later and we contacted Dr. Orrin Devinsky her neurologist at NYU and Dr. Howard Weiner her surgeon.

Have I mentioned that I love these two men??? They are awesome. They always respond to my emails within the hour, even if they’re vacationing in Colorado! They recommended we get an MRI and an EEG. We had both of these completed locally at Duke. Dr. Devinsky also suggested that we may want to increase her lamictal some. The EEG looked fine but it was only an hour long. The MRI looked good as well. It was negative for hydrocephalus and showed no apparent shifting.

Over the next week Gabby’s behavior worried us. She was acting very moody, the left side of her face was extremely droopy, and both her therapist and myself noticed increased left lower extremity weakness. We became concerned that she was experiencing subclinical seizures or seizures in her sleep that we weren’t seeing. We flew her up to NYC and she was hooked up to the video EEG for 5 days. The neurologists at NYU did not see any seizure-like activity. They said the left side looked great. They reported there is some discharging from the right occipital lobe but it appears to be completely disconnected and has atrophied significantly. We took Gabby off of Lamictal, thinking this may have been related to the worrisome behavior, and she remains on a slightly increased dosage of Trileptal along with her nightly klonopin. She has been doing amazingly well over the last 3 weeks.

Gabby’s talking and her ability to communicate with us has really begun to soar over the last few months. She is saying at least 50 words now. What a gift this has been once you have questioned whether you will ever know your child’s thoughts and needs. To see Gabby enjoying books, and music, and saying the names of each of her siblings is so wonderful. She calls”mommy”, pats me on the leg, and asks for her “bup”, when she is thirsty. I never new if we would get to this point…. Thank you for this, Jesus.

We took a trip to the beach this past weekend and I felt so blessed to be there with our 6 children. So blessed that we didn’t need to bring along a wheelchair or any medical equipment. So blessed that we could set Gabby down in the sand and watch her run with the other kids. So blessed that Gabby ran down to meet each wave and then turned to gallop away before the cold water could catch her little toes. I can not really describe the joy her smile brings to my heart. I can not really describe how far she has comes so I will have to upload a video when I get a chance.

We continue to be thankful for each day…. each moment we have together.

Love,

Kelly

Comments

  1. Praise God, for His mercies endure forever.

  2. So happy to hear that everything is working out so well for Gabby. She is such a doll! We hope to be able to meet up one day. God bless you and your wonderful family.

    Love,
    Jennifer Jonnes, Noah’s mommy

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