Where are we now

I'll try to finish the rest of the backstory and bring us up to date with everything.

We met with the Neurologist and the genetics team on Dec. 28 who again gave us pretty bad news. They still seem pretty convinced Presley has TS even though her tests showed no tubers. We have sent out her blood work to the east coast for genetic testing but that will take 4-8 weeks to get back and even then we won't have a definitive answer.

I guess we were feeling a little more hopeful than we realized because when they told us Presley still had an 80% chance of mental retardation even without the TS it again felt like a punch in the gut just like it originally had. I imagine it will probably always feel like that. I've never been around mentally disabled people so my mind automatically jumps to very severe cases, I needed to clarify what exactly "mentally retarded" meant. On the more mild end the geneticist says she could get married, have a family, have a job but just not be as smart as most people. Our neurologist also has patients who have graduated from high school and may be able to live on their own but might always need an adult to check on them, be in charge of their finances, etc. We didn't get to into what the severe end of the spectrum would look like and I'm okay with that for now. Everyone keeps telling me to take it one day at a time and I do try but it's impossible not to worry about her future. They say we won't know the severity of her delays until she is around 3 years old so I am trying to take it a day at a time realizing that I'll be missing out on today worrying about tomorrow but the uncertainty of the future is probably the hardest part of this whole ordeal.

At our meeting we needed to select a medication to try to get her seizures under control.

option one- Prednisone, a steroid that would cause a ravenous appetite (potentially eating every hour), high blood pressure, irritability and would compromise her immune system.

option two- Vigabatrin, has previously been illegal in the US because of it's one major side effect.. Vision Loss.

Obviously neither option was thrilling but we decided to go with Prednisone to start. Presley has been on Prednisone now for two weeks and although she is still having seizures we are beginning to see some improvement. We just increased her dosage three days ago and she has only had one seizure in those three days, down from three a day at times so we are cautiously optimistic. Her blood pressure was creeping up so with the increased dosage we had to add a blood pressure med, we go for blood pressure checks every other day or so. We go back to Oakland on Jan 20 for another EEG which will show if her brain waves have normalized, if not we will most likely switch meds. This process will likely be repeated until the seizures are gone and the EEG comes back normal.

It's urgent we get the seizures under control asap because babies usually have a hard time developing while they are still having seizures. Presley has learned to roll over and to sit on her own while having IS which is great especially because some children actually regress developmentally. The hardest part for me is that Presley doesn't laugh or smile anymore, every once in a while she'll crack a tiny smile at us and it literally brings tears to our eyes. I even catch myself getting teary eyed when Peyton is really laughing hard at something, I appreciate it in a whole new way.

So for now we're just cooped up at home since we can't risk Presley getting sick. I'm hoping for nice weather again tomorrow so we can at least get out for a walk, the sunshine does wonders for my mood.

Keep praying for my baby girl!