Happy New Year!
Overall Jaylie is doing really well. The vigabatrin has really been affective. Jaylie's brain activity has almost completely normalized. Jaylie has continued to be seizure free while on the vigabatrin. We will continue to use the vigabatrin for the next 6 months or so.
Jaylie has lost all of the swelling that happened during the ACTH use, has leaned out a bit and gotten longer. Jaylie's appearance is changing rapidly every couple of days.
Jaylie is still not eating orally and still spitting up a bunch. We are working with Jaylie to get her to start eating orally again. Progress has been pretty slow with the oral eating stuff.
Jaylie, myself and Kristina have been off and on sick from around Christmas time until now but we are getting better.
The occupational therapist is working with us and Jaylie to help Jaylie with eating and movement. We are working with Jaylie on sitting, standing and crawling. Jaylie is able to sit and stand with support but is still not crawling or mobile yet.
Jaylie is laughing, moving around, playing and a lot more vocal making dada and other short syllable sounds.
The last couple of weeks has been pretty crazy and intense with the holidays and such. Though we thoroughly enjoy the holidays, I am glad to be in the new year and working on establishing a new 'normal'. If you recall, this crazy roller coaster of seizures and an Infantile Spasms diagnosis started at the beginning of October. We were not sure what the holidays were going to be like with Jaylie being sick and the medical treatments we had to go through... We are happy to be starting a new year healthier then we ended the previous year. It feels like we have turned a new chapter and are on working towards establishing a new day-to-day routine.
Thank you for all your prayer and support! We really appreciate you all!
Nathan, Kristina and baby Jaylie