Wednesday, October 31, 2007 7:50 PM
Wow – today’s appointment with Dr. Leigh took a long time. Not only did we not get back to see her until an hour and a half after our appointment time, but it took a long time once we got there.
Basically Dr. Leigh is concerned that Rebecca is now having what are known as Drop Seizures (Atonic Seizures for those who know the technical term). This means she is now having 2 seizure types. What this also means is instead of having Infantile Spasms, she is progressing into having Lennox-Gastaut Syndrome. This is more or less a progression of Infantile Spasms, marked by having multiple seizure types. We are going to wean her off of the Phenobarbital (at Mom’s insistence), and she will be started on a medication called Lamictal. Something we will need to do more research on, to consider after she is finished with her chemotherapy is called a VNS, or Vagal Nerve Stimulator.
This of course is something David and I need to do a lot more research on, but I know it is something that has helped a lot of people with drug resistant epilepsy, which is what Rebecca has. Infantile Spasms, and Lennox-Gastaut Syndrome (LGS) are both Drug Resistant Epilepsies. We took her to a few houses for trick or treating, but after such a long day she was really just ready to get in the bed. It doesn’t matter too much, we had so few kids come to our house that we have ample candy left over. Plus she got a few treats at the Children’s Health Center. There was even one nice Mother, Grandmother and cute little girl that had brought bags of goodies and let Rebecca pick out something. We got some Play-dough! That should be some fun sensory and Tactile stuff to play with – but we have to learn not to eat it. Rebecca also ate her very first lollypop! hopefully I will post the pictures tomorrow! At least She wore her costume to the clinic today!
Sunday, November 25, 2007 12:26 PM
Thanksgiving was good. Rebecca ate sooo much food. Thursday we went to Raleigh and spent the day with Grandma and PopPop and she ate some Turkey and all the trimmings, including a Becca sized slice of Pumpkin Pie. I can’t believe she ate so much. Everyone loved seeing her. Then Friday it was off to Thomasville and Kernersville to see Granny for Lunch, and then Grandpa and Kathy for dessert later. Again, for the 2nd day in a row Rebecca ate a lot of food. Friday she had some more Turkey, and fixings. For her deserts, she ate some Banana pudding. YUMMY. The Grandparents couldn’t get enough of her. Although everyone certainly got a taste of daily life with her. The little girl who doesn’t walk – but never sits still! All Daddy and Mommy kept hearing was “Wow, she sure is an active little girl”. Haha! Please pray that she can put all that energy to good use and start walking
on her own. On a good note – we should be getting her the helmet soon. We are expecting it to get ordered on Monday. I am very Thankful that this has finally come through for her.
One year ago we started the Chemo. Thank you everyone for all your prayers for the past year (and before, for the epilepsy). Your prayer has meant so much to me.
Monday, December 10, 2007 4:11 PM
We have our first helmet for Rebecca! today is day one with the helmet. so far so good. She even just took a little tumble backwards. Not a seizure, but just an uncoordinated fall backwards. But she conked her head hard – except for the fact she had her helmet on. So it didn’t even phase her. How wonderful. This past weekend poor baby was battling a touch of the stomach bug. Early Thursday am, I was awakened to her crying. I went in to see what was wrong, and discovered she had vomited. YUCK. Not the kind of surprise you want to find at 4am. I woke David up and we cleaned her up, and changed the sheets. She was fine all day, we went slow on the food and drinks. then again Saturday morning, she got sick. Several times Saturday. So we tried Saturday to get something into her, to keep her hydrated. Sunday we just spent the day giving her an ounce or two every half hour. Poor baby.
Tomorrow is another Chemo.
Wednesday we have a Speech Evaluation with the folks from Early Intervention. This will qualify her for Speech Therapy services.
Wednesday, December 12, 2007 10:10 AM
I added a picture of Becca in her helmet.
Basically we needed the helmet to protect her as she is playing and moving around in case she has one of her seizures. Even though the seizures she has are not what most people think of when they hear the word seizure, she still hits her head pretty hard as she falls. The helmet is a little big, which gives us room to grow into it, but we also still need to tweak it a bit so it fits her properly for the here and now.
Friday, December 28, 2007 1:47 PM
Rebecca had a very Merry Christmas.
It was the first holiday she has had that she was not overly sleepy or did not have so many seizures that cast a shadow on the day. She had so much fun exploring all of her toys as she opened them. Of course the wrapping paper is still as much of a toy as the item inside the box. It has not been until today that we are seeing the After Christmas crash, where she is more tired and having a few more seizures. But both David and I knew it was coming. We just feel blessed she could enjoy Christmas eve and Christmas day. After the first of the year Rebecca has another MRI, just a routine MRI, but it is something to pray we get good results for. We also have several clinic appointments in January. The Eye Dr, the neurologist, and of course her regular Chemotherapy appointments. Please pray these all go well.