Gabrielle is Walking!!

Gabrielle continues to have 1-5 seizures per day. She is waking throughout the night lately which may also be seizure related. The medications do not seem to be helping. Johns Hopkins called today and they don’t feel Gabrielle is a particularly good candidate for the diet. They could schedule us to come in July if we are interested in giving it a try but said that children with cortical dysplasia generally benefit most from surgery. We are trying to figure out our next step. Please continue to pray for wisdom and direction.

The good news is, despite all of these seizures, Gabrielle seems to have gotten a better handle on walking. She had a good day Monday and was walking all over the place! Just wanted to share the following video so you can see the progress for yourselves.

Nothing Left to Fear

We continue to take one moment at a time. Gabrielle has been doing better since we increased her medication on Tuesday evening. She has had two very short seizures. She becomes very sleepy from the meds in the morning but has had some pretty happy afternoons and evenings. She seems to be struggling with her balance a bit. One minute she can take 12 unassisted steps and the next moment she struggles to take one. I’m not sure if this is med or seizure related but most likely it’s related to both.

We continue to pray the seizures come back under control and that Gabrielle would continue to move forward developmentally.
I’m reminded today of the immense sacrifice God made for us. These earthly problems pale in the shadow of the cross. The following lyrics, from a song by Rebecca St. James, come to mind:

“There is nothing left to fear
nothing Heaven knows
For He died for us to give us life
and to give us hope He rose.”

Happy Easter!

One Moment at a time…

Gabrielle continues to have 1-2 seizures per day. The abnormal electrical activity makes her very fussy and not herself at all. It is like she is not completely here. I contacted Johns Hopkins about the ketogenic diet and they will be getting back to me about whether or not they feel she would benefit from the strict dietary regimen they offer. I will be discussing her medications and other treatment options with her doctor today. Please continue to pray we are guided in the right direction.

My dear friend Lisa reminded me in an email to “be thankful and celebrate just this moment”. Last night we definitely had one of those moments to be celebrated. Although Gabby had a seizure yesterday, when she awoke from her nap, it was like everything in her brain had normalized and she was taking 8-12 steps at a time and walking all over the place to keep up with her big sister Maddie. It is that moment that is carrying me through today! Thank you, God!

Please Pray for Gabrielle

Gabrielle has had 3 seizures since I last posted and it is so difficult to watch her struggle with this again. Please continue to lift our daughter up to the Father. Please pray that we would be given direction about how to proceed in terms of medication or other treatments. I constantly need to remind myself to push the worry aside and trust completely in God’s plan. It is so hard and so I appreciate your prayers and support.

One Day at a time…

Gabrielle went 18 days without any seizures and then had one yesterday morning on the way to church. She had another one this morning after waking up early with a soaking wet diaper and bed.

It is so difficult not to worry. Each seizure brings back the flood of concern about what tomorrow holds. Yet I am reminded of the bible verse from Matthew 6:34 “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”

I began thinking last night of the death of Eve Marie Carson at UNC. Her parents may not have had any reason to be concerned for their daughter. They may have only been looking forward to a very bright future for their daughter and yet her life was taken at the age of 22. I recall the fatal accident on I-40 that Gabrielle and I were protected from. We may forget that our days on this earth are numbered as we busy ourselves with daily tasks. We may forget that we are all mortal as we distract ourselves with engagements and responsibilities. Yet the fact remains, each of us IS mortal and the bible says “And who of you by being worried can add a single hour to his life?

So I will continue to pray that I will be anxious for nothing and that I live each day as though it were my last.

Happy Girl

Thank You, Campbelltown United Methodist Church!

Gabrielle received the prayer shawl, seen in the pictures below, from a church in central PA. This church was made aware of Gabrielle’s health problems by Gloria Shannon, the sister of a friend (Carol Auer) here in NC. The church’s prayer warriors have been praying for Gabrielle for months. Attached to the shawl was a card which read:

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Thank You, Auntie Stephanie!

Gabrielle received the prayer shawl pictured below from Stephanie Thompson who is the Aunt of my soon-to-be SIL Nancy Holdsworth. She worked on this shawl with 6 other women and even her son Jack had a role. Stephanie included the following note with the shawl:

Though you do not know me or any of the fabulous women who have knitted on this prayer shawl and prayed on it and you, please always remember, you are so loved and cherished. My son, Jack, prayed on you and has been with me through the making of this shawl. We have all spoken your name and lifted you up in prayer holding this shawl with tears in our eyes knowing that God has a wonderful life in store for you- He has made you strong and you are covered in so much love. You, Gabrielle, will always be in our lives-once we speak a name and lift it to God aloud, that person is written in out hearts! What a blessing you have been to us all.

Kisses and Hugs to you and your family. I am so blessed that Nancy and Russ allowed me to be part of your life.

Always remember God loves you and so do I.

Auntie Stephanie

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