A busy day

This past week has been a little bit overwhelming to say the least. Colbey Raye was started on the Trileptol at a low dose and a plan to gradually increase it and to slowly decrease the Keppra. Friday was the last day of the increase of Trileptol and we were really hoping it would help calm things down, but in reality things are just getting worse for Colbey Raye. While we were in the hospital 2 weeks ago Colbey’s seizures were predictable on when they would present themselves, they were always coming during the transition from being awake to falling asleep. Every so often she would have them during sleep while transitioning from one sleep cycle to the next. Now her seizures are coming while awake happy and playing. She will have them while I’m holding her, while eating her mashed up baby food, while in her walker playing, they are coming very unannounced. She sometimes will show subtle signs that one is about to happen, her chin will quiver, and her eyes blink differently, she begins to look confused, these little signs can come and go for 5+ minutes before the seizure actually hits, but it does help me try to prepare for one.
Yesterday was day 4 of being on the full dose of Trileptol, and because things were getting worse vs. better I called into Neurology. While waiting for the call back I took Colbey Raye to her Physical Therapy appointment, which went well! She was tired and a little bit grumpy (grumpy for Colbey Raye really isn’t very grumpy!) but still showed Ann (her therapist) her new tricks. Colbey Raye is starting to push herself up with her arms, she can spin herself around on her tummy, she rolls over her left side now, and she can sit up all by herself for a few seconds! Her stamina is very low and she gives up quickly, and her right arm still needs reminding that it is in fact there for her to use, but she is advancing! After Therapy the nurse called back, I explained all that was going on and she emailed Colbey Raye’s doctor so now I was waiting for the second call back. The rest of Colbey Raye’s day mainly consisted of seizures and naps. She had over a dozen seizures and she would take a nap after each one , even if it wasn’t nap time, they just exhaust her.
While I was making dinner last night Neurology called, it was Dr. Ko, and she asked how Colbey Raye was doing. I explained and she decided we needed to adjust medications yet again. So now we have raised the Trileptol a 4th time, and are no longer discontinuing the Keppra (the Keppra dose was raised as well). Colbey Raye is on 4 anti epileptic medications for now, but even these changes aren’t expected to help control her seizures much more. Next we discussed the tests and appointments we have scheduled, and what we should expect during and from them. The MRI and the PET scan will hopefully give us good insight on where all the seizures are coming from and the focal point of the Dysplasia. Once we have all the results the next step is a big one, a huge one. Last night Dr. Ko informed me that Colbey Raye will be receiving surgery as soon as possible if the results come back relaying enough information. This proses is going to be speedy and there will most likely be little time between receiving the test results and prepping for surgery, so little time that Colbey could be having surgery before Christmas. The emotions in our house are high, we know this is the best option for Colbey Raye to be seizure free and we have been pushing for surgery, but when it becomes a reality it is a little frightening. Any surgery is scary, brain surgery, very scary. We are hopeful and excited, and thankful we live close to Seattle Children’s Hospital.

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