As you can see, my resolution to blog more frequently is more easily said than done.... but I am doing my best to keep all guilty feelings in check- which, with a Catholic school upbringing nicht immer einfach ist.
However, given our past with Shrimpy, I think getting caught up in day-to-day things is something that I can really be thankful for, and I have really been enjoying the small stuff.
As of this writing, she has been seizure free for 3 months and 8 days. Every day without is truly a gift. We have slowly been reducing one of her meds since 3 is a lot, and (**knocks on an entire forest**) it is going well so far. I am still processing the trauma that we have been through, but think that it will take a long while. Perhaps I will seek out a therapist, but I'm not sure yet. My nightmares have gotten better, and I can sometimes forget that we have the threat of seizures breathing down our necks and am determined to have us all live as normally as possible.
Since my last post post concentrated a lot on the hard realities that we have been through, I am going to brag a bit, and list the things that make me proud at the moment because I can:
- Shrimpy and I exclusively breast fed for 6 months (despite 2 illness periods where she was too weak to drink)! In fact, we have somehow managed to have no major difficulties other than the times she was ill. I feel really lucky that our breastfeeding relationship has been so solid. On her half birthday, we gave her sweet potato to try out (baby led weaning). She isn't quite ready, but we keep practicing for when she is ready.
- We made the family decision to try having her sleep in her own room since all 3 of us were no longer sleeping well, and since then, we have all slept great!
- Shrimpy has a slightly smaller than normal head circumference, but everything else is normal. She has more than doubled her birth weight and has met all of her developmental milestones. She turned over in both directions in May and did it a few times afterwards, but has since been distracted with other things- like her feet!
- The few trips we have taken as a family have been great- with very little fussiness and no trouble sleeping elsewhere. Yay!
- We got a spot in our first choice for daycare- one right around the corner with phenomenal opening times meaning that I can work 40 hours if I so choose and don't have to miss out on too many meetings, even though I will surely find a way around as many as possible. We spoke with the manager there and she has already had good experiences with other children with epilepsy and even double checked with her staff to ensure that there were no prejudices against families like ours. Check and check!
My American brain can still hardly believe that I have been off work for so long and that I don't have to go back until February. With appointments, playgroups, meeting up with friends, and everything else that normal life and keeping up a household entails, time has really been flying by.
I truly cherish being able to rock my baby to sleep and nurse her whenever she needs it. Playtime and nap time and yes, I can even appreciate when she throws a tantrum because she now hates taking her medicine- because she is healthy enough to tantrum and we now know that her being upset probably isn't a trigger.
We have even found a babysitter that we have gotten to know gradually and had our first date night since my mom was here. It was a nice, brief time out for the first time and good for us.
All in all, it isn't easy living with the "what if" in the back of my head all the time, but I refuse to let Epilepsy scare me from having the most normal life possible for me and my family. Shrimpy deserves that, and so do we.