Continuing this journey

I have decided to return to my long neglected family blog as an attempt to capture this journey so we can look back and see God's hand on the family and Delaney. I thought about lots of options on how to keep others updated in the process as well as being able to journal our thoughts and prayers and maintain a record that can later be printed.

After a fun weekend on the lake, we took the kids to Abilene for Cousin's Camp with Nana, Papa and Memaw.  This was the second year their younger cousin Hannah joined in the fun.  Sadly, the week was shortened for Delaney.

We received a call on Monday,  July 7th that the EEG results were abnormal and we needed to begin seizure meds and we needed to have an MRI.  This had already been ordered previously in the event it would be needed.  After talking to Dr. Kokash, we determined that Delaney could do this without sedation (looking back now I laugh because if you know Delaney, you know she rarely sits still or stops talking).  John and I talked and decided that this was important enough to get her from Cousin's Camp if it could be scheduled.  They gave us two dates a week apart.  We chose the sooner one.  So off I drove to Abilene on Wednesday night to pick up Delaney and bring her home.  I must say that was a very emotional trip home as Delaney did not want to leave camp, especially knowing it would continue without her.

Thursday, July 10th the three of us drove back to Temple to the McLane Children's Hospital for the MRI.  Again they let one of us stay with Delaney.  So we said goodbye to Dad in the waiting room and headed to the back.  The radiology tech who was administering the MRI was amazing, with a very calm demeanor.  She set up the movie we brought (did you know that they have movie goggles for kids during the MRI?)  Delaney wanted to bring Frozen, but she thought she might break out into song so she chose Madagascar 2 instead.  Delaney was put into the helmet with the goggles and slid into the machine.  God is good!!  She laid perfectly still for the scans, 1 minute, 2 minutes, 9 minutes, 7 minutes.  In between each scan the tech talked to her through the headphones and allowed Delaney to scratch and wiggle.  Then the tech came into the room and said we were waiting on a nurse to come and place the IV for contrast.  Looking back now, my momma's heart knew at this moment something was amiss and I struggled to maintain my composure.  I questioned her about the contrast because I knew the original order was for an MRI without contrast.  Her response was, "the radiologist wants a better picture of the abnormal spot that the showed on the EEG, so the contrast will light it up."  WHAT!!  No one said anything to us about an abnormal SPOT on the EEG.  They only said the results were abnormal.  My limited medical mind assumed abnormal just confirmed she was having seizures.  We had not even prepared Delaney for this possibility.  So the nurse came in and explained what she was going to do and I stood on the other side and distracted her.  Just a few tears.  Then she was super cold and shivering - thanks to the contrast.  One of the other techs brought her a warm blanket.  Amazing.  Exactly what she needed.  Back she goes into the helmet and machine.  Cue the movie and one last 5 minute scan.  Afterward, the tech told us that Delaney sat still for all the scans and did not have to repeat a single one!! Praise the Lord!!  I asked about results and again we were told we would have them on Monday.  Back to Dad and back to Waco for lunch.

"They must have known I like pink"

We sat down with our food and I received a call from Dr. Kokash's nurse asking us to come to the office when we were done with MRI.  I told her we finished an hour ago and were back in Waco and were told not to expect results until Monday.  She said they had results and Dr. Kokash wanted us to return today.  We finished quickly and sent out text messages with what was happening and while attempting to stay strong and not loose it emotionally we headed back to Temple.

Dr. Kokash asked if he could talk to us without Delaney.  So she sat in the hall and we saw the scans.  She has a tumor.  The scan showed a dark spot and we were told that was a fluid filled cyst.  Her diagnosis was a cystic tumor in the right temporal lobe.  She needed surgery to remove it.  We told the MD Delaney needed to see and hear this as well.  So we brought her back into the room, showed her the scans and gave her the diagnosis.

We made it out to the car and began to leave, then the tears began to fall.  We pulled over and John wrapped her up in his arms.  Such a picture of where we are right now.  Wrapped up in the arms of our Heavenly Father, allowing the tears to fall.

God is good.  He knows the outcome of this journey that we have begun.  He is okay with us being scared, he is okay with us asking questions, he is okay with the tears and the admittance that we do not want to have surgery.  The one thing he asks is that we trust him, bring our fears to him, cry out to him.  In the end we come full circle acknowledging that Delaney has accepted Jesus as her personal Lord and Savior. He lives in her and through her.  We will continue to glorify God in our circumstances and we know that we will come out stronger on the other side.

Our Journey Begins

Over the past several months we have noticed periods where Delaney would not respond to a question for several seconds.  When she finally did respond it was always with a comment about her stomach hurting and a deja vu type of feeling.  In April we attended my cousin's wedding and we counted 7 "episodes" over the course of the weekend.  Several of these were severe.  They always started with her complaint of stomach pain and and the severe ones included the tightening up of the muscles on one of her extremities.  I also noticed an aphasic episode where she tried to tell me her foot hurt and instead she said her "flavor" hurt.  These all subsided after a few seconds to a minute. She had no recall of the events during her seizure but always could tell me after that she had one.  We began to track these upon our return home.  At this time we were beginning to think they were seizures, but still we did not know.  Interestingly enough, I was out of town in May and watching something on Netflix and they were describing symptoms of deja vu as a symptom of absent seizures (formerly know as petit mal seizures).  This is when we began doing research and decided that she was in fact having absent seizures.  In June we attended one of our college student's wedding out of town and again Delaney had multiple severe seizures throughout the weekend, so we began to video several of the episodes.

On June 25th we began the process of diagnosing her seizures.  We met with a new pediatrician Dr. Rebecca Riser and told her our concerns.  She gave Delaney a clean bill of health (besides the seizures) and referred us to a neurologist.

One week later, July 2nd we met our Scott & White neurologist, Dr. Kokash. He is a quiet man who wrote down her case history and listened to all of her symptoms.  We then showed him the three videos of her seizures.  His demeanor immediately changed and he diagnosed her with complex partial epilepsy.  He stated that her head turns to the left during the seizure indicated "something" on the right side of the brain was creating extra electrical activity.  We had not realized until then, that when Delaney's seizures included a head turn, it was always to the left.  He stated that "something" could be a genetic abnormality, brain trauma, an infection, cyst or tumor.  He said we needed an EEG as soon as possible.  If the results were normal, then we would begin medicine and monitor her progress.  If the results were abnormal then we would need an MRI to determine cause.  We returned the next day on the 3rd to the Scott & White main campus for the EEG.  The whole family came, but only one of us could go back with Delaney.  She would have a series of tests with flashing lights and then a period of one hour of monitoring and they would prefer if they sleep.  (My children do not nap, so we began to pray over her sleeping - and kept her up late the night before and woke her up early the next day).  God is good, after the initial flashing lights and rapid breathing tests, Delaney fell asleep almost immediately and stayed asleep for the remainder of the EEG.

All hooked up.  It will take some washing to get the gel out of all that hair.

All wrapped up, ready to go.

ALL her hair mixed with ALL the wires.

We were told we should have results the next week.  So we went to the lake with our friends for the July 4th weekend.  Everyone had a blast, but we had to keep an eye on Delaney being around the water.  We were informed of seizure precautions and could not leave her unattended in the water.  While out on the lake Delaney did have one significant seizure, but God protected her and it was right after she climbed onto the boat after being in the water swimming and playing most of the afternoon.  We decided to call it a day after that.