.Seattle. The city where we would find out the real diagnosis and prognosis for our beautiful daughter. I'd been anticipating this trip since we found out about Lily Kate. I remember sending in every single test result, MRI image, EEG, Swallow Study, and Therapy report dating from June to December 2012 to the man that discovered Lily Kate's brain malformation and its link to the DCX gene, Dr. William Dobyns. At first we were told that we could only send material to his research lab where he would review the results and report his findings to us. We were also told that it would take up to 8 months to hear back from them. Thankfully through a friend that also saw Dobyns I learned that we could just call and make an appointment. So I did. And off to Seattle we went. So here is a summary of what Dr. Dobyns told us: Most of the information we already knew except for the prognosis
Lily Kate has a brain malformation called Subcortical band heterotopia. Its a neural migration disorder. In typical brains the gray matter migrates to the perimeter of the brain. Lily Kate's gray matter did not make it there. Instead it stayed in the middle of the white matter and formed a band. Lily Kate's entire brain is affected. There is not one area more affected than the other. Thus, because of the plasticity of the young brain no specific skill is affected more than the other. We just know that she will and does have intellectual and motor delays. As far as the prognosis goes...well he has seen many cases of this exact condition. So he truly is the expert on SBH. He said that although Lily Kate is doing great now she may not always be doing this great. The reason is because of the epilepsy. He told us that her epilepsy will get worse as she gets older. And that the key here is keeping it controlled, which can be very tricky to do. He said the reason these kids don't do well is because of the epilepsy. And that the best case he's seen in a full grown person with SBH is the mind of a 15 year old. We aren't sure why this happened. There is a chance that I am a "mosaic" carrier of this gene. Meaning it doesn't show in my blood work but I carry the DCX gene mutation. Or it was a freak thing that happened during her development in the womb.
We left feeling like we heard the bad news for the first time all over again. We had no idea that it could get worse. We knew that she was at risk for seizures, but we had no clue that she could have up to 30 seizures a day. I really can't explain how I feel right now. Probably the best word to describe my condition would be sadness. I am numb from crying, screaming, worrying, driving to therapy 4 times a week, wondering when her epilepsy will get worse, worrying the what-ifs about everything... I am sad and scared. I am terrified of what the future holds. But. I am reminded of Christ. And His goodness. He is good. Even if things here on earth suck temporarily. He is nothing but good. Even though I don't understand it. He has a purpose in all this. So I'm trying with all my might to hang on to the hope to which we are called to have. He is all I have left. So I have no choice but to hang on for dear life to my Lord who loves me. Who loves Lily Kate. Who loves my husband. He knows what's going on and he cares. And he hears my prayers day and night. He hears me declaring healing over my daughter even though the prognosis is not good. Oh how I hope he will answer "yes". Please join us in praying for our precious girl. Pray against epilepsy. May Lily Kate re-write the research done on this condition. I hope it says "Epilepsy is common amongst SBH, but there has been one case where epilepsy was not significant in a patient named Lilyana Comstock." And may the students reading it know that it was because of Christ's power.
"The sun of righteousness will rise with healing in its wings." -Malachi 4:2
"Nevertheless, I will bring health and healing to it; I will heal my people and will let them enjoy abundant peace and security." -Jeremiah 33:6
"He sent His word and healed them, and delivered them from their destructions" -Psalm 107:20
"Your light shall break forth like the morning and you healing will quickly appear, then your righteousness will go before you and the glory of the Lord will be your rear guard." -Isaiah 58:10
