We had a wonderful weekend with our family for Jackson and Charlie Claire's baptism. We kind of pulled the baptism together kind of quickly and didn't have much notice to give our out of town family. My grandmother, brother (Charlie Claire's God Father), Aunt Sally and Jason's cousin (Jackson's God Father) were able to make the trip...thank you all for traveling on such short notice! We had such a nice time spending time with our family and Father Jim had such a lovely ceremony for the twins. Here are a few pictures from the weekend...
We really want to thank our wonderful family for making yesterday so beautiful!!
There probably won't be too much medical business to report the next few weeks. We are pretty much in a holding pattern until March 30th. Right now, C has good days and bad days. Thursday she hardly had any clinical seizures or spasms and then on Friday it seemed as though she was making up for all the ones she didn't have the day before and had a TON :( We feel so helpless watching her have these episodes because there is absolutely nothing we can do at this point to stop them. At the appt the other day the neuro didn't seem to want to increase her level of phenobarb so we really think that this is just going to be our "normal" for the next month. Our little girl seems to have her days and nights mixed up a little bit - this isn't uncommon for her when she gets new meds or we take her off a med - it's just very hard to get her on a schedule because of her medications but usually it works itself out within a few days.
We were looking through some pictures last night and thought everyone would get a kick out this Here is a picture of Charlie Claire the day before she started steroids...
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