Please pray

Please pray we would hear from Boston soon. After raving about their quick response on Monday I haven't heard anything else since then. I need to hear from the nurse coordinator so we can figure out if we are going to travel up there. She was out yesterday so, please Lord, let her call today! We also need her help to get on this new and final medication for Oliver's spasms. I thought he would be on it by now, so it is hard to wait while he continues to have seizures.

We are thankful that yesterday Charleston was able to schedule us for an appt. next Wed. Praise the Lord! That is really good! Of course, we need to make plans to go down there if that is what we decide. Although Charleston is an easy choice as far as travel time, we'd have to have another neurologist involved ((sigh)) and return at 1 month, 3 months and every 3-6 months afterward. In the short term this would be faster but, long term this is quite a travel commitment for the next year. Especially when you add in trips to Boston and Duke.

In Boston they are ok with us coming now (to start the diet) and then returning in the late summer. Our 1 month follow-up can be done via lab work and phone calls. The good things is we will have to go there anyway in the late summer for Oliver's annual testing/ appointment (MRIs, EEGs, etc.) In addition, they pioneered this diet. Since the diet is new it makes sense to go with the experts, if an appt. is avaliable soon. Lastly, we'd love the chance to have another appt. with Dr. Theile to talk about what we can do next if the medication and/or diet doesn't work. I think our only option after these is neurosurgery. The thing about neurosurgery is we don't even know if Oliver is a candidate. Clearly an appt. with her would clarify our options or lack there of. The weird thing is we'll know within 1 month of starting each treatment (drug or diet) if it works. So we maybe have 2 more months before we reach the end of the line, other than surgery.

In happy news Oliver has began singing his ABCs. He gets really excited about the letter "h"! We should make a video and post it...it is pretty cute!

We're continuing to trust that God is at work, even at times when we can't see exactly what He is doing. Thanks for your continued encouragement...we appreciate it!