Presley is doing great, she had another EEG on March 4th which again showed no hypssarthmia so that is great news! Her neurologist says there is still a little slowing in the back brain but every time I ask her to elaborate on it or explain what it might mean she keeps reassuring me it's no big deal and we should just be celebrating the fact that the hyps are gone. Presley's urine test came back clear so we still have no idea why she had infantile spasms.
Dr. Hayward (Presley's Neurologist) wants to start weaning her off of the Vigabatrin next month which terrifies me! I always assumed she would at least be on it for six months, but if we follow this weaning schedule she will have been on it for just under four months. I've been doing research and emailing with other families who have dealt with IS and I may end up pushing for Presley to stay on it for a full six months, I'm just not sure yet. I never thought vision loss would be the lesser of two evils but compared to the damage IS can cause it definitely is.
We are finally able to leave the house again which is so exciting for me! We had our first family outing in four months the other night. We didn't do anything exciting, we just went to Target and Costco but it was so great to be out and Presley was so good, I think she was ready for a change of scenery also. We also went to a birthday party this weekend which was fun but I feel like a brand new mom again. I'm so used to being at home that I wasn't sure what to do to get her to sleep somewhere else and I also just stopped nursing so dealing with formula and bottles is also a new concept for me. I know I'll get the hang of it again but it's an odd feeling to be learning all of this again with an almost 10 month old.
Other than Presley continuing to improve it's been a rough month. My grandmother passed away earlier this month which was kind of a shock to me as I didn't even realize she was sick until she only had about three weeks left. Both Peyton and I came down with strep throat so I had to miss my Grandma's funeral which I felt horrible about. A few days after that a close family friend passed away, it just seems like my family can't catch a break. I've done my best to stay positive through this whole mess but I just reached my breaking point and had a horrible day full of tears last week. I think it was a combination of everything. It was finally sinking in that my Grandma was gone, I'm still stressed and scared about Presley's condition on a daily basis, I hate relying on my family so much for help (I greatly appreciate it but I just feel bad I can't do it all by myself), I occasionally get sad reading other people's positive updates on facebook about all of the things their babies are doing that Presley isn't doing and I still just wasn't feeling good. It was a very bad day but I'm out of my funk now and I realize that for me trying to stay positive through all of this is my only option otherwise every day could easily turn into that same kind of bad day. It isn't always easy to look on the bright side but I know I have so much to be thankful for and things could be a whole lot worse.
This face too!
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