Lanier Landing

Twice a day I get to see a miracle. Oliver has to take Amoxicillin for his "lung infection." As you know, Amox. has an odd smell, so imagine what it tastes and smells like when it is crushed up...Andrew and I literally gag. It is the Lord's miracle that Oliver will take it. We get him interested in a TV show and then slowly coax him through it. Bless his heart he is such a champ. This is a miracle as he can't have liquid meds (too much sugar) or chewable anything. All meds (other than Sabril) are crushed and mixed into applesauce/butter mix. The crushing releases a bitter taste so, everyday when he takes his meds, I thank the Lord for a tender mercy.

OK I wrote that last night and this morning was didn't go as well. Dang. He spit out a fairly large amount, which I tried to scrap off the floor but, that has probably contributed to the 5 seizures he has had today as of 6pm. Sigh.

At this point it is pretty obvious that the diet isn't working. So, on Friday I spoke with Heidi, the Boston nutritionist, about further tweaking Oliver's plan. He has gained weight which is clear evidence that his body is storing fat instead of burning it. Clearly we have a ways to go before we are really in the right place with the diet. This diet thing is a beast--I know I say that a lot but, it is how I feel. I feel like I wake up each day and wrestle down a literal beast. It is even more complicated than I originally imagined. Each day a new challenge, a new fight. I digress- sorry.

Heidi had some fairly significant modifications to this already radical lifestyle. I think that I had been so focused on what he was eating and not when he was eating. She thought if we spaced out the carbs, very methodically, and lowered the total amount per day his glycemic index might stay more stable. I won't bore you with all the details but, basically it means our life gets even more regimented. Deep breaths and pep talks are getting me through this. It is wearing me down though, it can be hard to keep hoping.

My grandmother (I call her Mudder) has been here the last few days helping me. She has been an extraordinary help. I feel so blessed that she is able to be here and help us carry this burden. I cried when she left (which isn't really my personality) because I just really appreciated her, more than ever in my whole life. I miss her already...

On Monday I am going to go ahead and schedule the MRI and EEG at Duke. Hopefully the wait won't be too long. Also, we are trying to sort out Oliver's recent behavior issues. He is just grumpy and irritable 80-90% of the time. It is possible it is related to the med, Keppra. We have recently increased it. We started him on Vitamin B6 which (for reasons that are not known) can help with the behavioral effects of Keppra. Of course, having a 2 year old makes this especially difficult to discern. 2 year olds aren't known for their pleasantness.

I continue to be encouraged by the other moms I have met in similar situations. Their courage and perspective help me feel sane. It helps me "pull it together" when I get overwhelmed. There is an instant camaraderie when you have walked a path such as this. It is a club I wouldn't have willingly joined but, now I am honored to be included.

Please continue to pray for us. We are weary and confused. There is so much going on that are heads are spinning. Thank you for all your love and support- we are very, very grateful.