Today marks two years since the most horrible day of my life. The day Levi was rushed to the hospital by ambulance, only three weeks old, and unresponsive. We spent an entire month at Cardinal Glennon Children's Hospital, and have dealt with many issues since then, including brain surgery, acid reflux, epilepsy, hip dysplasia, Ketogenic diet, feeding tube, and more.
I used to look back on that day with feelings of regret and guilt, but now all I see is how God has worked through those terrifying situations. Yes, the brain surgery was scary, but a shunt was placed to drain the excess fluid from his brain into his stomach, which works beautifully and we have all but forgotten that he even has hydrocephalus. It took months of screaming and ER visits to discover that he has severe GERD, and trial and error to find a medication that would work for him, but that is now controlled. Hip dysplasia was found by accident when x-rays had been taken for a different reason, and I hated that cast more than words can describe, but he only had it half as long as expected, and his hips are working well now.
Epilepsy has been our biggest hurdle. Once he developed infantile spasms we tried medication after medication to combat the seizures, but each med either did not work enough, or made things much worse. The Ketogenic diet was offered to us many times, but we had read negative things about it and decided to use it as a last resort. The decision to start the diet came last Spring when we were told we were exhausting the list of meds that we could try. I wish I had researched it more extensively early on, because it has been the miracle we were looking for! When Levi started the diet in May he was taking five anit-epileptic drugs and still having over 100 seizures a day. Now, Phenobarbital is the only seizure med left, and we are in the process of weaning it off! The seizures are not completely gone, but we are seeing only a handful a day! We are about to make another change to the diet and I expect for the seizures to be completely eradicated at that point! What a blessing!!
So through all these very serious issues, the Lord has been at work healing Levi, and building our faith. If I have seen all that Jesus has done for us over these last two years, how can I not believe that he will do even more for us in the future? I have SEEN him work miracles. I KNOW he heals. I can't wait to see what he has in store for us this year!!