Sophie is HOME!!!

The day we've been waiting for has finally arrived...Sophie came home with us this afternoon!  She did well overnight so when I called this morning they said they were preparing her for discharge.  We are thrilled and nervous at the same time.  She will inevitably have seizures at home, but our prayer is that they are few and far between and don't often have to be stopped with emergency medication.  We feel as prepared as we can be and know that it will just take going through these types of situations on our own to get more comfortable.  It feels nice to be at home knowing that nothing is urgent.  Every time I've been home in the past month has been temporary and I've rushed around getting things done before having to leave again.

The girls love having Sophie home.  They only got to see her once on the afternoon she was born.  They keep showing her their toys and Kayla just loves sitting next to her and telling me everything she does.  I can't stop walking over to peek on her to make sure she's okay.  It's going to take awhile not to be so paranoid about her having seizures.  I've spent the afternoon organizing things and setting up a cabinet for all her medication.  It's so different this time around...we feel so at ease caring for her, but have these new challenges to manage as well.  I'm sure it won't be long before it becomes routine.

Sophie most likely has surgery in her future.  The doctors think that her seizures are coming from the largest tuber in her brain (there are 6 of them--one larger, 5 smaller) but want her to be 4-6 months old before operating.  We hope that in eventually removing that particular tuber her seizure activity would lessen or even stop and that she would have to be on so many medications.  Her TS diagnosis leaves a lot to "wait and see" and we just pray that she will grow up mildly affected by it.  For now we deal with any seizures, go through a lot of follow up specialist appointments, and most importantly ENJOY having her home with us!

Thank you for all your prayers...please keep them coming!  Sophie has a long road ahead of her, but she is loved by so many people already, even those we don't know.  We can't wait for everyone to meet her.