Home Again

Thursday morning Will had his blood drawn to check his blood levels for the medicine. From 7 to 10 we noticed 8 seizures. 8 seizures in 3 hours! Normally we would see 8 seizures in less than 10 minutes. It was this remarkable change in seizure activity that led to Dr. Wheless' decision to send us home. Will's blood levels were only at 30. The Dr. wants to see them at 100. So he has added an extra dose of medicine to be given. We are supposed to go on Monday and have his blood drawn and levels checked then faxed to him.

After speaking with the Dr. he gave the go ahead to have the electrodes removed from Will's head. Will was not excited about this. Imagine having 30 small metal circles super glued to your scalp. Most of them came off pretty easily with a solution they use, but some of them were really fastened on. His head was very tender and very aggravated where the electrodes had been.  We gave him his first bath since Saturday night and tried to shampoo the rest of the glue out. We were mostly successful, but he still has some white spots that look like he has been painting and gotten it all in his hair.

We were discharged at 4 and were home by 9. We met some other families that were dealing with seizures/epilepsy all varying in their severity. The first was a little boy Will's age who had had seizures since he was a baby. He is still yet to utter his first word. A 14 year old girl who has had tonic clonic seizures since she was 18 months old. They were from North Carolina and had previously spent 9 days at the Cleveland Clinic. Then there was an 8 year old girl from Little Rock. Bailey. She was so weak she needed to be pushed around in a stroller. Not only was she battling epilepsy, but cancer too. I didn't meet her mother, but her father made a really big impression on me. He was so patient, so kind, so positive with her.  I can't imagine how tired and worried he must be. But he didn't let it show, and that in and of itself is exhausting. As we talked he told me they had been in the hospital the previous week and sent home on Friday. However after they got home her seizures became so out of control they had to be readmitted. Bailey and her family are now a part of our prayers.

We have been home for almost 2 days. Will is still having 10-15 seizures a day. He seems to be tolerating the high dosage fairly well. We have noticed a new rash on his legs. The Dr. said typically allergic reactions start on the abdomen or ribs. This was the case when Will was prescribed cefdinir, and he itched really badly. We are just to keep an eye on it for now. While we are not "out of the woods" yet it is good to be home and altogether again. Will and Jack really missed each other and are happy to be get to play together...mostly.

We are so grateful for the many thoughts, prayers, fasting, gifts, and deeds that have been offered and given for Will's and our behalf. It is overwhelming at times. Very humbling. There are many who have offered and done so much--without being asked. just trying to lighten our load. We love each of you and are so thankful for you. Again and again we have been reminded of what Spencer W. Kimball said,

"God does notice us, and he 

watches over us. But it is usually through

another person that he meets our needs. 

Therefore, it is vital that we serve each other...

So often, our acts of service consist of simple

encouragement or of giving mundane help

with mundane tasks, but what glorious 

consequences can flow from mundane acts 

and from small but deliberate deeds!"