They allowed us to go into an isolation room, but told us if another patient came in that required isolation we would have to be relocated to one of the other shared rooms. There was nowhere to sleep in the PICU room (I think they do not want family sleeping there) But one of the nurses came up to us and offered us the use of a "meditation room" which had 1 reclining chair, 1 couch a light and a table and it was about the size of a janitorial closet, and in any other circumstance would have been humorous, but in our situation it was perfect. We thanked them profusely and accepted the key. By this time Brandy's mom had arrived and Brandy's dad had left for home. We decided the best thing to do would be for 1 of us to stay with Amanda and the other 2 to get some sleep. I am a better night person so it was decided that I would take the first shift. I went down and loaded up on sodas, coffee and candy bars (the essential stay awake items) and settled down to watch some TV. Amanda slept pretty good that night, just waking up a few times and Brandy came in around 7am to relieve me. I slept for a few hours and was woken up to be told that we were being transferred up to neurology.

Sunday - Neurology - Neurology was much more comfortable for all of us. Most of the rooms are double rooms and some of them are single rooms. We were initially put in a double room and told we probably would not have anyone else in the room that night because Sunday is not a big transfer day, but Monday they may have to put someone in the other bed. This worked out well since there were 2 pull out chairs that convert into a bed (sort of) and one hospital bed. Enough sleeping quarters for all of us. We no longer had to joke about someone sleeping in the hospital crib with Amanda. Miami Children's Hospital is a "training hospital" and we must have had 15 different doctors some in and go over Amanda's case. I guess since SWS is so rare they all wanted an opportunity to see her. We were ok with that though and maybe it will help them in the future should they ever have a patient with SWS. Also on Sunday they told us that they would want to do another MRI and most likely would be tomorrow morning as soon as they could get us in.

Monday - At 7am they wheeled us down to the MRI department and went over the routine with us. They then sedated Amanda, but unlike Lee Memorial Healthpark, they would not allow either of us in the MRI room with her. We sat nervously in the waiting area for about 90 minutes and then were called back into the recovery room. We were told that Amanda did well, but she started to come out of the sedation and they had to give her the maximum dose, that also proved to be too little, but they were able to finish. They said the sedative contained Phenobarbital in it and since she had already built up an immunity to it the sedation was less effective. We were in the recovery room for about 30 minutes then she was sent back to neurology. A lot more happened that day, but to sum up we were able to get a room in the Devonshire Apartments which are low cost apartments owned by the Hospital for family members to stay in while children are in the hospital. This was terrific because they were only about a mile away. We also had another patient put in our room and it was kind of nice to have someone else to talk to. Later that day Amanda has 1 mild seizure lasting only a few minutes. After talking to Brandy who witnessed it I believe it was a simple partial seizure because she was conscious through it.

Tuesday - Early Tuesday morning Amanda had another seizure. This one was definitely a simple partial seizure because although her eyes would deviate to the left, you could still call her attention to you and she would look at you and acknowledge you. The most amazing part was the fact that throughout the seizure and her typical left hand clenching, she was still able to give me and the nurse "high-fives". She was also willing and able to play with a ball, we would hand it to her and she would grab it, pull her arm back and throw it. She thought this was funny. To me, even though this seizure was another set back, it showed that the medication kept it from becoming a complex partial seizure. Later that afternoon they performed another EEG, but this time only for about 20 minutes. This time they tried to induce seizure with flashing lights, but she had no seizures. They also increased her Trileptal, eliminated the Dilantin and cut the Phenobarbital in half. Amanda had been making progress toward returning to a "normal state" whereas she was not nearly as irritable and much less restless. When they reduced the Phenobarbital and Dilantin, she made great progress toward being much more emotionally stable and she was overall much happier.

Wednesday - Not much happened today The doctor increased her Trileptal once again.

Thursday - Seizures still being held at bay. Trileptal increased again to the dose that they hoped to send us home on. We are told that if she does well over night they should be able to discharge us the next day. They switched from the IV form of Phenobarbital to the oral form. This apparently tastes awful and is alcohol based, so it burns going down. Amanda was very unagreeable with this.

Friday - We are discharged today. We were 99% happy and 1% worried. We did not want to remain in the hospital any longer than possible, but there is a certain comfort lever knowing that the experts are just a shout away. I think you have to be in this situation to fully understand. They wrote out the prescriptions and we decide to go with the pill form of Phenobarbital because the oral has been so hard for her to keep down. The pills, we are told, are very small and can be crushed up and put in some food (applesauce, ice cream, yogurt) We are also given instructions on how to increase the Trileptal to her normal maintenance dose and how to decrease and eventually eliminate the Phenobarbital. We are also given a prescription for Diastat, which is to be used if a seizure lasts more than 3 - 5 minutes.

July 22, 2003 - Since Amanda's release she has been seizure free. She was not able to walk for about 1 week after getting home and then slowly, over about another week, was able to regain that ability. Her speech and mental process does not seem to have been effected in any way and now has a vocabulary of about 150 words. We think this is fantastic for 19 mos. She can put 2 and 3 words together to describe something on occasion. Her left hand when we were released from the hospital was probably functioning about 50% normal. Most people describe it as a weakness, but I describe it as a lack of coordination or lack of dexterity. I am no medical expert, but I would attribute this to the fact that her right parietal lobe is affected by SWS. When she would reach for something, she would have to really "think" about where her hand is and how to operate it. She has really made progress in the last 3 weeks though and her arm and hand are back to about 90% function. Someone that does not know to look for a problem would not even notice it.  Amanda has pretty much completely adjusted to the medications as we were told she would.  She will sometimes wake up the middle of the night calling for her mother and we do not know if this is a side effect of the medicine or if she is just still a little traumatized from her 2 weeks in the hospital.

Sturge-Weber Foundation Conference - As fate would have it, the Sturge Weber Foundation had a conference planned for the weekend 2 weeks after we were released from the hospital.  Initially I thought this was not enough time for me to settle back into daily life and rush out again, but eventually decided that I had to do.  I can safely say that I have not regretted for 1 minute going out to the conference.  There were the leading Sturge-Weber experts there including Dr. Chugani and Dr. Juhasz from Children's Hospital of Michigan, Dr. Comi from the Sturge-Weber Center at Johns Hopkins Medical Center and Dr. Morelli who is a Dermatologist who has a lot of experience with Sturge-Weber and Port Wine Stains.  The conference spanned 3 days and included lectures by the doctors, workshops with question and answer sessions, one-on-one consultations with the doctors, roundtable discussions divided up among older patients and younger patients and plenty of time for the parents and family members to mingle and exchange stories and experiences.  This was extremely therapeutic and extremely educational.  My only wish is we had more time and money to have been able to bring my wife and daughter out there to meet everyone.  All the adults and children were so upbeat and enthusiastic it just brought joy to my heart.  People were able to talk to each other without having to start out the conversation by explaining what the condition is as many of us have to do now.  To anyone out there that is in any way affected by this condition - GO TO THE NEXT CONFERENCE.  I especially want to thank Karen, Anne and Carol from the foundation for making me feel like part of a family and "Larry from Michigan" for showing all us new-comers the ropes.