We have had the most horrifying 24 hours of our lives. Tuesday night Anaia woke at 11:00 pm to her sister Sophia, age 7, choking on her own vomit- she ran to get us. When Dave found her she was unresponsive with no body control, unable to move her own head to the side. Anaia then ran to get me. When I came into the bathroom, Sophia was such a mess we couldn't clearly see what was happening. After cleaning her up in a bath slightly I noticed that along with her rhythmic moaning, she was twitching the left side of her mouth. I knew then she was seizing.
Dave ran to call 911. WI was in the middle of a terrible blizzard and although we live 15 min. from the hospital (about 5 minutes for an ambulance), it took them 20-30 min. to reach us (with the aid of the fire department).
Her seizure continued, adding in her left eye, by the time the police arrived her left arm, and by the time the paramedics arrived a worsening of the twitching in her arm, and while administering anti-seizure drugs, her left leg.
We made it to the hosp. about an hour after Anaia found her. We spent 6 hours in the ER before they were able to transfer her to the PICU and she finally opened her eyes and responded. The CAT scan in the ER revealed brain abnormalities, but due to the storm, we would have to wait for an MRI tech to arrive sometime during the day when the roads were plowed to find out what was going on. It was the longest wait of our lives.
Wednesday she received an MRI, spinal tap, and EEG. She has a brain deformation of the right temporal lobe putting her at risk for seizures stemming from this area. She also has spots on both sides of the frontal lobe, but it doesn't appear to be causing problems at this time. She has officially been diagnosed with epilepsy and is on
anti-seizure meds indefinitely, providing that they are effective. She will be monitored and come back for another MRI in a month or 2. Brain surgery to remove this section of the brain and monitoring brain activity with electrodes placed directly on the brain are future potentials depending on her response to this first medication and whether or not the lesions get worse. This med presents with a personality disorder that requires discontinued use in 1/3 of the children who take it. Please pray that this medication, at the current dosage, eliminates Sophia's seizures completely without the side effect. The other medication options can cause liver and bone marrow damage. Please pray that there are no dangerous breakthrough seizures- especially at night where she may not be discovered seizing.
To complicate things a bit, she tested positive for H1N1 Thursday morning. This viral fever is likely responsible for causing the seizure to activate. It could have been anything at any time that sparked the onset of her seizures, however. This was actually a good discovery in a way, as they were able to pinpoint the cause of her fever and discontinue the herpes encephalitis medication. (The lab results are delayed due to an
understaffed lab, and the anti-herpes drugs are only available intravenously. Even though they were very certain her seizure was caused by her brain malformation, they couldn't take any risks of missing something and her fever was still a question in their minds. She has had the fever since she went to bed Tuesday night.) Once they could blame the fever on H1N1, they decided to discharge us from the hospital.
Please pray for Sophia and our family. Her 1st seizure was a very serious one. Pray that the lesions on her brain do not worsen over time. Pray that the 1st choice for medication is successful and she doesn't have any breakthrough seizures that could bring her serious harm or death. Pray that she will not seize at night when no one can help her... Pray that she can accept her lifestyle changes in stride without fear. Pray for Dave and I to be able to let go and accept God's plan for our sweet girl. Pray for sleep for us- right now I cannot imagine ever sleeping soundly again. Pray for peace in the hearts of us all, especially the children, who are quite shaken. Pray that the H1N1 virus runs it's course quickly and Sophia recovers from her nasty cough. Pray that no one else gets the virus.
Please lift us up, we believe solidly in the power of prayer. Petition these things on our behalf so that the great God of miracles can hear our cries. We know that God has been protecting Sophia since the day He created her. Her condition happened in utero or in early days of infant brain development. God placed her in our family and made sure
that everything necessary was in place before revealing her condition to us. It didn't happen in the orphanage where there may have been no resources or people to care for her. It didn't happen during any of our subsequent trips to China- not even when she was gravely ill during our adoption trip for Nina. It didn't happen when she was sleeping alone in her room as a baby in our family. It didn't happen when she was sharing a room with Selah who likely wouldn't have heard her. Yes, it happened in the middle of a blinding blizzard, but after she had a new room-mate, a sister who wakes at the drop of a pin and a team of paramedics who could skillfully navigate the treacherous roads
to the hospital.
We have so much to be thankful for. We praise God for His provision, and give Him all the glory.
Thank you all for your support and love for Sophia. She is a very
special little girl who needs your prayers.
Subscribe To RSS Feed
