Christmas 2011 Update

Amanda has been doing really well lately with seizure activity. She had a couple of blips after the flu shot where we had to intervene with meds but since that passed she has done pretty well. She had a high fever Christmas day but got through that pretty well and since then, the seizures have really declined.

Her VNS was adjusted on the 20th and we go back the 4th for another adjustment. She has handled the adjustments (where the doctor increases the voltage output) really well. Her neurologist is quite happy with her progress and is very optimistic that we will regain seizure control with the VNS. Already, the magnet intervention has stopped two seizures in progress where she was locked in a tonic state and we swiped the magnet and the seizure stopped. We also went to an amazing church before Christmas and 3 wonderful ladies prayed for Amanda. I firmly believe that prayer is the strongest medicine out there and I can already see the effects. I am confident that seizures are soon going to be a distant memory and rejoice in that concept.

We are very thankful that Amanda continues to do well and praise God for his loving mercy on her. It is so special to see her improving so much and our family receiving such good news during the season in which we celebrate Christ's birth. God is so good. Sometimes it can be frustrating when she wont sleep at night or takes a bite out of you, but then we are reminded of what God did for us and the frustration melts and the thankfulness replaces it.

Thanks for all the prayers for Amanda and our family. I hope that God blesses you and your families and that 2012 is a wonderful year for you all!

Susan

Getting smoother again

Amanda is doing pretty well again. She is averaging 2-3 small seizures a day now and we are hoping to see them go away altogether. Last week, she got the stomach bug and that caused an uptick in seizure activity but things seem to be settling down again. The neurology and neurosurgery appointments went well. Her incisions are almost completely healed up and she has tolerated an increase in the VNS settings quite well. It goes off automatically for 30 seconds of every 5 minutes and the it can be triggered to interrupt a seizure. When it is triggered by magnet, it goes off for 1 minute as the next higher setting. It continues to be an effective means of stopping seizure cycles. For whatever reason, she seems to throw 1 seizure each morning about 30-45 min after waking up. However, the VNS intervention seems to get the cycle stopped so that is good news.

The neurologist thought she was finally stable enough to get her flu shot so she got that on Tuesday and seems to be handling it well. She didn't spike a fever at all. Mentally, she seems to continue to be quite clear. Her eyes are straighter and she is answering questions faster and with more accuracy again. It is nice to have her back to her normal again, and maybe even more improved. Both the neurologist and neurosurgeon are optimistic that the good early results that we are seeing with the VNS will translate to good news in the long run. Maximum benefit from the VNS is typically seen somewhere between year 1 and 2. Amanda will go back to the neurologist every two weeks for the next few months for VNS adjustments, but she will not have to go back to the neurosurgeon until next October when we do her MRI and MRA to check the stability of her aneurysms.

We hope everyone is having a joyous Christmas season. It is hard to believe it is almost here. We still don't have our tree or decorations up but plan to work on that this week. I am done with my finals but Dan still has a few to go. Katie has one more week of school and then she is out for a few weeks. She continues to enjoy playing sports and riding horses. Currently, she is on two basketball teams and one volleyball team, so she is quite busy. She just got named co-captain of her school basketball team so she is excited about that. She made the B team and their first game is on Monday. Today she had a Halo Hoops game. Anyway... we are all doing well. We hope you and your families have a blessed Christmas season! We know we are so very blessed to have Amanda doing so much better. It is a true answer to prayer and we are very thankful! God Bless you and your families!

Love,
Susan

Very Thankful!!!!! Good news continues!!!!!!!!!!

Thrilled to tell you that Amanda continues to do very well. We go back to the neurosurgeon and neurologist on Monday for check-ups and probably some tinkering with the VNS settings. Even at its lowest level, this device has truly been an answer to prayer. I have my sweet little girl back and her seizure activity is down at least 95+%. Thank you all so much for all of the prayers!!!! God is good!!!