Photography of Leah
http://leahgracejarmer.shutterfly.com/
Many of you have asked us to share more photos from our journey over these past 13 days. Here is a link to see more photos. Leah's Aunt Charissa took all of these beautiful photos, and they capture the love and memories that we've been able to create with Leah.
Leah had her 2-week check up with her Pediatrician today, and she currently weights 5lbs. 14oz. She is still hanging on, and allowing us more time to love her and care for her. It does feel like she seems to honestly be declining, in terms of her strength and health. Her seizures are becoming much stronger and frequent, and we aren't sure how much longer her body will be able to handle such stress. Her body isn't able to get enough oxygen during these seizures, and that is very hard on her heart.
As you can imagine, watching your own child go through this is beyond hard. We love her so much, and of course do not want to have to say good-bye. Watching each seizure come and wondering if this breath will be her last causes such anxiety and concern. We need so many continued prayers for our family's peace and trust that God is in control, and that He is with us. We're fully accepting that the best place for a sick little girl is Heaven. Yet the reality is still so bittersweet as we want more time to hold her, but can see that her body is so weak.
Also prayers for Kyla, who loves her baby sister so very much. I couldn't have imagined how deeply a 3-year-old could care for a tiny baby, and watching it is simply beautifully touching. Whenever Kyla walks into a room the first thing she asks is, "Where's baby Leah?". She wants to make sure Leah is ok. At lunch today Kyla said that she thinks Leah wants Jesus to come and hug her. She knows that when Leah dies she will be with Jesus in Heaven, but her next comment was if we could drive and visit Leah in Heaven.
Yesterday we put the girls in matching Easter dresses, and it was simply lovely! I painted both their toenails, and yes, even Leah got purple sparkles. And this morning Leah got to go to Kyla's playgroup and meet all the other Mommies and kids.
God is teaching us to trust Him moment by moment. He is accomplishing His will through Leah's life, and we are so thankful to be her parents.