We have been in Denver Colorado for 5 days now. This has been a rough five days, but I know things will only get harder before they will get better. God has promised us that he is always with us, and for that I am so glad. But before I get into what is happening now let me start back at the beginning of our trip, 5 days ago....
We have been waiting for 2 months to get into the Ketogenic Clinic at Childrens Hospital in Denver Colorado. The medications that they have Ethan on are just not working, so the ketogenic diet offers the hope of less seizures just by changing the child's diet. We have heard stories from other parents, (who also have children with doose syndrome) of how the diet has helped the seizures decrease, or completely stopped the seizures all together. Because of this we want to give it a try. The statistics say that it will help 2 out of 3 kids, and that 1 out of 3 kids will see there seizures disappear completely.
So last week we drove down to Denver to meet with the neurologist, and the ketogenic team of nurses. The doctors don't really have any new information for us. They are still running tests, and now they are looking into genetic testing. Ethan has been having quite a large number of drop seizures (this is where he will just fall over without warning) and he is pretty banged up because of them. He is falling all the way to the ground now when they happen, usually hitting his face or head. Praise the Lord for the helmet.
During his good moments he has enjoyed the Ronald McDonald house that we are staying at. They have a large indoor play area for the kids (That is mostly carpeted...PTL) and they have a great outdoor area as well with slides and other play equipment.
On Friday he has having a very hard day, lots of drops, falling, bumps and bruises. Then in the evening we had planned on visiting a friend of ours here in Denver for dinner. Well just as we were getting ready to leave Ethan had a tonic clonic seizure lasting almost 5 mins. I was so thankful that it stopped at that point because we didn't have to administer the emergency medication. He then was very tired and slept quite awhile. Our wonderful friend, that we were suppose to visit just packed up dinner and brought it to us! Thanks Brittany. :)
Brittany and Ethan on Saturday
I love how good my God is! Would you believe that while we have been here at the Ronald McDonald house God has still been speaking to us about he people of Indonesia? We had the awesome opportunity to meet a family that is from the Island of Sulawesi in Indonesia. This sweet lady is here because of doctor appointments with her little girl. She grew up on Sulawesi, and had so much fun sharing about her life there. She also spent some time helping Bob read his Indonesian Bible.
We are now gearing up for tonight. Ethan will be admitted to the hospital to start the ketogenic diet tonight at 6:30pm. This will start with a 24 hr fast. Please be praying for us during this time. Ethan has been very grumpy because of all the seizures, and I know that this will only increase when he is fasting. Monday and Tuesday will be hard days, but we are looking forward to learning this new diet, and seeing the seizures decrease.
Through this time we continue to trust God in all things. I am reminded of Psalm 32:8 "The Lord says, 'I will guide you along the best pathway for your life. I will advise you and watch over you.'" God is so faithful, and we are thankful that we serve a God that is so much bigger than Epilepsy. Thank you all for your prayers!
