Trepidation

Today is Eli-Grace's 3 month birthday.







The past week has been full of anxiety as Eli of course steps a little outside of her normal and has been exceptionally sleepy. It's hard to read these signs and know what they mean. It seems to have settled out again, and likely isn't anything of great concern. That being said, what's on everyone else's mind, and on ours is, that Elianna died just 8 days after her 3 month birthday...we only had about a week of warning with her, where we felt like something was up, but didn't know how to interpret it. In hindsight, we of course can now see what was going on. It's hard to not to hold our breaths as we live these days leading up to that landmark. We've done this before and we know what's coming, but anticipating your child's death is still a brutal experience.







Milena is becoming more and more of a big helper in our home. She certainly loves to be a part of caring for her sister.

It's hard to say what will happen with Eli-Grace. For some context, I know of a family who had identical twins with the same condition and they died at 4 and 8 years old. Doctors aren't saying anything prognosis wise, and they really can't, it's just too hard to predict anything. She's definitely got her own personality and way of being in the world. Her issues are different that Elianna's, but we seem to be managing them reasonably well.

Today I was watching her, and marvelling at the fact that she can move her arms (more than her sister could). I can't always tell if the movements are seizure activity or not, but I try to enjoy them regardless. So, it seems that she is doing a bit better than her sister at this age, but that's not to say that disease isn't still present and progressing.






My gut says we will get to spend at least part of the summer making memories as a family with Eli. We've managed to be adventurous a few times, and will hopefully do a few more outings. It's a bit of a challenge with the pumping and feeding schedules, but I'm more flexible now than last time (I have a much greater trust in my milk supply), and feeding feels more flexible too, because Eli-Grace lets us know if she's hungry, though it's much easier to stick to the schedule.







As a family, we are managing (sort of). Trying to developed a schedule that accommodates both girls' needs is tricky. Meal times and bedtime seem to often coincide with feeding and pumping. So, sometimes I get creative.







Walking this journey certainly has taken it's toll on us all emotionally. We are short with each other, much more than I would like to be. Michael and I struggle to have any time for each other, and feel like we are ships passing each other. Milena feels starved for time with me. There are days where I feel like we get it right. But there are many other days where it just feels awful. Please continue to pray for us, we need God's peace and strength to fill our home, and the gaps in our resources when it comes to our relationships with each other, and heaps of grace for the each other in the hard moments.

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