A Good Day

"This is the day that the Lord has made; let us rejoice and be glad in it." -Psalm 118:24

I began today by posting this verse as my Facebook status.  And honestly, I wasn't feeling it at all.  I needed some inspiration though, knowing that the day would be a busy one.  We had two follow up appointments today for Sophie in Fairfax at the Children's Hospital Outpatient Center.  One with the neurologist and one with an opthamologist.  Having no idea what to expect from either I assumed they would be as overwhelming as the past month of information has been.  It turned out that both of them went well, were very routine and I feel calmer tonight than I have since before Sophie's birth.  I really like Sophie's neurologist.  He specializes in Tuberous Sclerosis and just has a calmness about him that puts me at ease.  We reviewed her seizure activity since discharge as well as her current medications and then just talked about where to go from here.  He decided to up one of her medications a bit starting tonight.  His goal is to have her seizure-free at home and said that there is still room to up some of her medications before adding anything new.  While he sees surgery in her future as a strong possibility his goal right now is to manage her as best as possible on medication.  And we are happy with that.  He wants to follow up with her in a month.

The opthamologist dilated her eyes and found nothing concerning on her retinas (TS can cause tubers there too) but will want to follow up with her in 4 months.  He also mentioned that Sophie is very farsighted in both eyes, equally, but that was something she could outgrow and it was unrelated to TS.  This is something that Mike and I both agree isn't a concern at this time and even in the future.  I mean, how many people really ever know how well their one month old can see?  We'll deal with farsightedness later on if it even becomes an issue.  Funny how things get put in perspective in a situation like this. :)

I left these appointments with a sense of peace that things are going to become more routine and manageable with time.  Today I laughed more and caught myself NOT thinking about everything that has been going on in the past month.  I realized at one point picking up Sophie that I actually looked at her and saw HER...not a potential seizure or a lifetime of challenges.  That's something I've been struggling with since her birth.  Seeing her as a person, our daughter, and not a diagnosis.  Mike said to me today that we need to start really enjoying Sophie like we did Kayla and Madelyn when they were this age.  It's been so hard to do that amongst it all. 

Sophie's past couple days have been good.  She had several seizures on Saturday and one of them had to be stopped with the emergency medication.  I had to do it myself since Mike wasn't home and afterwards I felt much more confident.  She didn't have any seizures yesterday or most of today either.  This seems to be her pattern...a day where she has one or more, then two days of quiet, then maybe a small one, etc.  She had a short one this afternoon and it was the first time I felt like we handled it without panicking at all.  Slowly but surely we're getting better at this.  Everyone has said that we would, but it is finally sinking in that we can do this.  Or maybe it's just with me. :)  Mike has been my rock and such a source of encouragement during this whole time.  I am so blessed.

Thank you to everyone who has been bringing us meals and in advance to my MOPS group who I know has plans to bring us meals for the next month.  We appreciate it so much and it makes dinner time so much easier.  We're going to have better days than others, but it feels good to finally have a day that I feel like I will have a life again.  I won't be living in an ER or doctor's offices.  Sophie will grow and change and show us what she can do.  It's all in God's hands and I am trusting His plan completely.