I have been slacking on my updates, sorry!
The last update was about sleep, or lack thereof. Things in that department are still the same. On a good day I can get her to take two 30 min naps. She is still not sleeping through the night and wakes up at 2am ready to play. Since we have tried all of the natural sleep aids our neurologist said our next step would be pharmaceutical sleep aids. We want to avoid that for now and just try to manage. She doesn't have seizures at night when she wakes so I guess it could be worse.
Seizures: In November we increased the Sabril medication in hopes of cutting down the number of spasms that have been creeping back up again. It seemed to work initially but now we are back to the same pattern as before. No luck there. We don't have any other safe medication options until she is older so we are just trying to manage what she is doing now. Her seizures usually come frequently in the morning and taper off later in the day. I have changed all of her weekly appointments so that we are at home most mornings.
Procedures: she will be doing a double procedure next Friday. She is having a MRI and ERG done. We have done both of these before but it was this time last year. These are just to check to see if anything has changed. Pray this goes smoothly and for good results.
Other doctors: Our appointments have slowed down a lot now that we are established with our doctors. We go for routine check ups as needed. She had her 15m check up with pediatrician and she has improved developmentally. She has gone from 4m to 9m on the social aspect and from 4m to 6m on the physical aspect (gross and fine motor). She has made big improvements with feeding as well. She has learned to chew and can eat a larger variety of textures and foods. We are working on teaching her to eat with her hands. She is not that interested and would much rather have someone else do the hard work. We are just pleased that she is motivated by food :)
Another issue we are facing is crying and "temper tantrums". We are not sure if this is an age appropriate behavior or if she is having pain she cannot communicate to us. Since her main form of communication is crying, I find myself carefully trying to decipher what her cries mean. I haven't cracked the code yet... If this is an age appropriate behavior then its good in a weird way. Lets just say we pray for patience often. :)
Overall things are good and we are managing challenges as best as we can. She is growing and learning little by little. She has a smile and giggle that melts out hearts. We look forward to enjoying the holidays and making great memories.