medical update - finally

So surgery is scheduled - May 17th is the day. We will arrive at Children's on the 16th for pre-op testing and we have to check her in for surgery VERY early on the morning of the 17th. She will be in PICU at least the first night and if everything goes perfectly our stay should be about a week. The surgery itself will last about 3 hours but once they take her back it will be roughly 7-8 hours before Brandon and I will be able to see her. We decided to go with a complete corpus callosotomy. Dr. Blount (neurosurgeon) strongly suggested this (as did Dr. Kim her neurologist) and after many questions and much discussion Brandon and I felt MOST comfortable with this decision. Dr. Blount went into great detail and explained that it would not be impossible to learn to read (which is one of the things we were originally told and were concerned with) but it could effect reading. The greater worry (and why it would effect reading) is that it WILL limit her peripheral vision. As horrible as this sounds (and feels) he was very adamant in reminding us that our number one goal must be to reduce/eliminate seizures or development progress can be a non-issue. After the appointment we felt very relieved for several reasons 1)many questions had been answered 2)Dr. Blount went into great detail describing everything we could expect from start to finish (2 hours worth) 3)tough decisions were at least made and behind us 4)we had a date for surgery. So now we have entered another phase of waiting.............but I'm thinking now that this will not be the hardest part.

As for her current coniditon - I think the seizures know that we're coming after them because they're fighting back in a big way. Last week averaged 35-40 per day and they were coming in some pretty scary clusters that lasted awhile. After the clusters she would grab her head and just say no,no,no... this while running around in a very frantic state. It breaks my heart to think they are hurting her...I feel so helpless. After tossing around many options as to why this may be happening now I firmly believe that it is God reinforcing the decisions we have made concerning surgery (thanks Amanda) because let me tell you the doubts have been creeping in. Still increasing Lamictal.

This past weekend was wonderful. It was the best weekend I've had in awhile. Thanks to Jennifer and Ryan's wedding in Destin, FL I was able to get away for a long weekend all to myself. I spent way too much time sleeping on the white sugar-sand beaches, in the spa and just sleeping in general but I was also able to catch up with friends new and old and just generally relax. ALL Moms should do this for themselves once in awhile and I will surely be doing it more often! Thanks to the grandparents for watching out for the kids (Brandon too had scheduled a long weekend to himself turkey hunting in Kentucky - I guess Dads need to relax too). So anyway, since the appointment last week and then the tornados that have affected sooooo many sooooo close I had put off all thinking and feeling until after my vaca. Well, now that I'm home and the reality of it all is hitting like a semi I am feeling quite overwhelmed by most everything. There is so much to get done and prepare for before the surgery and I simply can't find the energy or desire to do any of it. Please pray for this-

Again, I want to thank everyone who has reached out to us following the appointment last week. We were barely out of the hospital before we were receiving texts and calls wanting to know how the appointment went and when the surgery would take place. It is so comforting to know those that love and support you in times like these-thank you all.

It is late - I am tired - I hope this post has made some sort of sense - one verse that still does - "For I know the plans I have for you" declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future" Jeremiah 29:11