Her first time in a Big Girl bed. We are both loving it! I can hold her and sit beside her, change her and dress her so much better! And she feels so grown up.
We are slowly making progress, I believe. Most of her fluid has come off and her blood pressures are much better. She seems more comfy and happy and is breathing much easier, thankfully! Right now, she’s still on the Vapotherm. With this machine, she has a nasal canula but the oxygen level can be turned up much higher then regular oxygen. She’s on 7 liters yet, with 35% O2. Hopefully , they can wean her down today and eventually get her on regular oxygen again. She didn’t seem to have any virus or infection, so we are marking it up as a fluid over load from her nephrodic syndrome.
One little BIG thing that was So wonderful was the prayers of the church on Sunday. They had 3 special prayers for Kierra. My eyes fill with tears just thinking about it. They literally covered her in prayer all the way to the ER and while we waited to get help. And guess what!! She held her own on 2 liters of oxygen and was relaxed. Even our hearts were restful and we had this peace that everything was in God’s Big Loving Hands!
Now a few little peaks into the last weeks of her happy and sad days at home. She’s been very up and down , crying and smiling, peaceful and flailing over the last weeks. A little like my heart has been.
There are the hard days…when my own heart gets weary and the love and caring of friends bandages us in love.
Kate stopped by randomly one day. Kierra was in a bad state, crying, moaning, groaning, and feeling miserable in general. She calmed down so well after Kate walked around outside with her, hauling her oxygen tank along:) The same day, Linda came over and washed my dishes and mopped the kitchen floor and vacuumed the dirty carpets. I just sat and held Kierra while she did that, and felt so loved and blessed. That evening, was Kierra’s turning point from days and nights of discomfort to resting better and turning the corner into our happy sunshiny girl again! My spirit felt balmed with love 🙂
Amazing how the kindness of friends makes me weep healing tears in my heart! Just to have someone take a turn holding her and loving her up and being OK with it if she doesn’t respond like other kids. Sadie stopped in one afternoon and spent a few hours, just being there, talking, laughing, snuggling the kiddos and praying.
Then that smile returned and we were so thankful!
We got a whole bunch of funness crammed into last week.
mornings in bed 🙂
the second he hears Kierra choking, he races for her suction and runs the switch for me. He takes his job VERY seriously! 🙂
we did finger painting one day. Kierra loved it! and smeared it EVERYWHERE! Kobe cried and hollered the minute it touched his hand or left a drop on the chair. He insisted on using a paint brush so he wouldn’t get all messy. The other day, I easily convinced him to leave a very attractive trike at Goodwill by telling him “it’s dirty” 🙂 It really was stained. Honestly. He happily walked the other way . Hmm… Is this really my little boy? 🙂
We had a kitchen pool party since we missed most of the hot summer days outside this year. Kobe was beside himself with thrills and wanted the weirdest toys with him in the water.
Crystal gave Kierra a bunny for her birthday. We just got it a few days ago, so we haven’t had a proper christening for it yet 🙂 But the kiddos were thrilled with it and Kierra loved when it’s softness brushed her cheek.
so we wait and long for the day to go home again. I am learning over again that trusting God is a choice. And although I do not understand why Kierra has to go through all this. Or why Kobe can’t have a ‘normal’ toddlerhood, I know one thing. God Is Good. It’s not a feeling as much as a choice to believe it. Because God cannot lie. I choose to hang onto that. He will NEVER let us go.
I get this sweet mental picture of tiny me (like a fairy sized me 🙂 in His huge hand. He’s stroking my back and calming my trembles and telling me “it’s going to be OK.” Even if it feels NOT OK on those rough days.
I CHOOSE TO BELIEVE!
Missing these two guys and hoping to see them tonight!!!!