Bug Update

I wanted to update on our sweet Bug after our trip to Le Bonhuer Children’s Hospital in the beginning of May. Many of you already know about the upcoming surgery...but I wanted to inform the rest of you so that you'd know how to be praying!

Bug had quite a few tests run including an MRI, a functional MRI, X-ray, a DEXA bone density scan, Transcranial Magnetic Stimulation, 72 hours of VEEG, different labs ran and a Magneto Encephalography (MEG).

While there we did find out that part of her 15th chromosome is partially deleted.  There are a couple of different syndromes that are linked to this and our neurologist Dr. Wheeles tested her for both and we’ll find out results soon.  She may or may not have either of them and to be honest neither of them will change the course of action we will take.  He made the recommendation for surgery and we agreed that it was the best option.  After having been on over 20 anti-epileptic drugs,  having the VNS two years ago and seeing as she continues to fall and hurt herself we agree.  After this past Friday, on my birthday, and this morning, seeing her stop breathing with seizures...we are beyond convinced that this surgery is the best decision we can make for our girl.  She needs a quality of life that we pray this surgery can provide.  Dr. Wheeles also placed us on another drug called Zerontin for the absence seizures she has.  We saw a reduction in seizures when we first came home on the new drug...but her seizures have crept back up. Therefore, we will be having a Complete Corpus Callasotomy,  set for July 2nd.

When performing a corpus callosotomy, the surgeon makes an incision from ear to ear and then cuts the corpus callosum, the large fiber bundle that connects the two sides of the brain. This interferes with the electrical propagation of a seizure between the two halves of the brain. It does not directly remove the seizure focus but decreases the severity of the resulting event.  Seizure frequency (of those seizures that cause her to “drop”) is reduced by up to 70% after complete callosotomy. This surgery is not curative. Rather, it prevents the spread and reduces seizure severity. Some patients experience disconnection syndrome after a complete callosotomy. They may have right-left confusion with motor problems, apathy, or mutism.  We are praying that there are no complications with Bug and that we see more than 70% reduction is drop seizures.

We met and loved the surgeon, Dr. Stephanie Einhous while at Le Bonheur!  The fact that she is a Christ follower and will pray with us the morning of surgery provided an instant calming, as well as her record and experience. Obviously, we will need a lot of prayer to send our little girl back for major brain surgery and I am thankful we have the support of so many faithful friends and family. The recovery time in the hospital is normally 10 days.  Surgery will be about 8 hours.  She will be able to resume normal activity within 6-8 weeks.  There are several risks associated with this surgery, but at this time in our journey through epilepsy, the hope far outweighs the risks.

Please be praying for peace of mind for us. We are hopeful, anxious and trusting God to give all that is needed.

We firmly believe Matthew 21:22, And whatever you ask in prayer, you will receive, if you have faith. God truly answered our prayers, by giving us this route we didn’t realize was available.

God is good all of the time and we KNOW He has plans to prosper our family and not to harm us.  Thank you for praying for His perfect will for our Bug.  We believe she is being used for His ultimate glory!

Blessings,

K

Rejoice in hope, be patient in tribulation, be constant in prayer. Romans 12:12