Sorry we didn't get a post up last night. We had a long day along with a long trip back to Utah. Yesterday (Thursday) we spent our last day at Johns Hopkins in Baltimore with Lauren. We had another class in the morning and then prepared to leave. Lauren has not been eating very much food at all and her independent (stubborn) personality is coming out. She resists taking her medication or doing anything we ask. Typical of a 2 year old. At times she will drink water and this helps a great deal. She is still very sleepy and lethargic but refuses to eat. The airplane ride went well and Lauren did pretty good on the flight. We made it back to Provo at about 11:30 last night.

It is pretty overwhelming to be home and on my own to do the diet. It kind of feels like after having my first baby and getting sent home from the hospital and them expecting me to know what I am doing!

Friday Morning Lauren is still refusing to eat. We gave her 20 minutes and then threw it in the garbage (according to doctors orders). It is so hard to see her so hungry and then refuse to eat. At lunch she ate a 1/2 a hot dog and about 5 small beans. It was good to see her eat but she would not touch the cream or butter. The most important part of the meal! Tonight my dad was holding her in the kitchen and she pointed to the cube of butter and said "please". We hurried and measured her 25 grams of butter and she scooped all of it in her mouth. I had to sit on the floor and not watch because it was making me sick. She still refuses the heavy cream so we converted it over to butter and she finished her whole meal for the first time in 5 days. (25 grams of butter, 3 grams of catchup, 35 grams of a hot dog, 15 grams of fruit=1/2 a strawberry). We then had to give medication-which is now by force. While giving her the medication she threw up some of her meal all over Marc and me. She is now bathed and in bed and we have survived our first day home!

She had not had a seizure in 3 days (except 1 small head drop yesterday). I am trying very hard not to get my hopes up to soon, but it is a good sign. On the first day in the hospital she had too many seizures to count with all the jerking and drops, the second day she had about 70, and on the third day she had none. It is has been amazing watching Lauren become more and more like her old self again. Since her seizures first began the longest she has gone was 3 1/2 day without a seizure. And that was always when they added a new medication, then her seizures would return and get worse despite being on all the medicines.

The night before we left we talked to the doctor about her most recent EEG. He feels the abnormal EEG is hard to show which syndrome she has for sure. (Lennox-Gaustot syndrome or Doose syndrome). They are both a form of severe epilepsy and are very similar in the types of seizures (drops, Myoclonic, absence, etc) but have a very different prognosis. When we go back to Johns Hopkins in 3 months they will repeat the EEG and that might give us a better idea of what to expect for her future.

Marc and I want to thank everyone for your prayers and fasting for our family. It has carried us through this very difficult time. We are so thankful for the gospel and the knowledge and peace it gives us. We feel so blessed!

Love, Tami and Marc