This week certainly has been intense....high highs and low lows. Right now as I type, Pinny is in a "pattern" of seizures and can't seem to get out of it. Tomorrow we drive to Cleveland and Tuesday's appointments can't come soon enough. We have two scheduled times with "the woman who writes the books on infants and seizures." We are hopeful for answers and praying for wisdom, direction and a TOTAL HEALING.
Even though this weekend has been hard, we are clinging to the "stones of remembrance" from Wednesday. We are praising the Lord for answering our prayers and trusting in His goodness.
Wednesday started out with an hour EEG to check Pinny's brainwaves during sleep. She was such a good girl and slept (as best she could) while being hooked up. The mid-day appointment with the pediatric geneticist could not have gone better. She saw nothing in Pinny's tests/labs that would indicate or confirm that Pinny has NKH based on new blood work that showed no elevated glycine levels. I am so grateful Jeremy contacted the NKH specialists and challenged the first spinal tap draw. Apparently the first one WAS contamined with a droplet of blood, thus increasing all the amino acids in her spinal fluid.
The follow-up visit with the pediatric neurologist confirmed that Pinny can now be taken off three of her five medications. Her EEG (from that morning) looks better, too. The "burst suppressions" are gone but her patterns are still showing "abnormal."
There still is need for continued prayer as further testing will be done to determine the source of her seizures. We are headed to Cleveland Clinic tomorrow for a few days. We would love for you to go with us in prayer.
One more thing that can't be overlooked, my mom went back to North Carolina this week. Again, there are no words to describe her selfless love (and my dad's too for letting her stay so long). I hope to be half the mom to Pinny that she has been to me. We miss you, mama!
We love you all and could not be doing this journey without your love and support-
S.
Steph,
ReplyDeleteThanks for taking the time to share the details of your journey with us! It helps so much to know how to pray for you guys! Be assured that our prayers go with you as you travel to Cleveland. I am specifically praying for CLEAR ANSWERS to Pinny's seizures and a CLEAR treatment plan.
Love and prayers,
Nancy
thanks for the update, we continue to check your blog daily. The Nelson's are going to Cleveland with you in prayer...
ReplyDeleteProverbs 2:6 "For the LORD gives wisdom, and from his mouth come knowledge and understanding."
1 Chronicles 16:34 "Give thanks to the LORD, for he is good; his love endures forever."
Going with you in prayer!
ReplyDelete“Is anyone among you suffering? Let him pray.” (James 5:13)
God certainly is good! Counting on Him...andi and I are praying for you along your journey.
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