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!!!!
Wildflower Muse 
Your faith is an inspiration to me. Psalm 139 is my spirit lifter many times. It doesn’t matter how low I sink or how high I soar, He is there! That Presence is such a comfort. Keep believing!
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Thanks for reconfirming my thoughts, Dorcas :)!!
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The last picture is priceless. The pictures of the two in bed almost haunt me. They seem so familiar–I thought I might be traveling this road. Lawrence the one year old with one or two handicapped sisters. And he would definitely have run for the suction. 🙂 I love the choosing to believe! I am with you!
I love how your friends love with their heart in addition to loving with their hands. If that didn’t make sense, don’t worry. So glad you have them; just wish I could come sometimes,too!!
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Beth, I was telling someone about your twins the other week when I nearly stopped i mid thought remembering how you had no idea what would happen to them! And the miracle they are! And yes, that DOES make sense:) Love you.
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So glad she is getting better. I hope you’re in the car driving home from the hospital by now. 🙂 I’ve been worried about her the last few weeks …. So good to hear your choice to believe even though it is so hard and I’m so glad you have friends who literally “hold up your arms.” Wish I could come see you. Maybe I could?
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Yep. ‘hold em up!” and anytime you need to take your boys on a field trip, you can bring them here for a first hand experience to hospital world/gtube wonders/how our bodies are so wonderfully created to function… 🙂 LOL! And thanks for praying!!!
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God is a choice. I really like that! I am so thankful that through the valleys God has chosen us, loved beyond compare to be one of His own..How he is perfecting us in Christ even in the most difficult times…Thankyou, Jesus..
Thankyou Anita for sharing your little girl’s story, more importantly, your faith in Our Savior so rich in His great love.
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Yes, Nancy…how GREAT the Father’s LOVE for us!!! He really did choose us first. And for that, I am forever thankful!
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Psalm 146:13 – The Lord is faithful to all his promises and loving toward all he has made. Praying for you as you lean on His promises. I really miss seeing you guys! Your two precious children are blessed to have the parents they do. Although Kobe may not be having a “typical toddlerhood” he is learning so much!! Lessons that not many are blessed to have. I had been hoping to stop by this week but sounds like next week may be better? are you at LGH?
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Hi Mari! I miss seeing you too!! 🙂 We decided Kierra decided to make trips to Dupont (that’s where we are) 🙂 just for physical therapy since she isn’t at home long enough to get much 🙂 Next week sounds great. I have some appointments scattered here and there and on Friday my cousin gets married, but shoot me a text if it suits you sometime!! Would love to see you again….Thanks for that reminder that God is loving and that Kobe is learning lovely life lessons as well! Blessings to you- Anita
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Evening, I couldn’t believe it, while doing research for a project for school I found your photos and decided to take a look. First let me introduce myself officially. My name is Krista Sweigart my daughter Hannah was recently your daughters roommate at DuPont. I never really saw your daughter but her photos are beautiful. Hope everything is leveling off a bit for your family. Ours is finally settling thanks to many answered prayers but as a parent of a special needs child, as I am sure you know, things are never really normal but we are so blessed by God to be given these beautiful little girls and give them the best lives we can. We travel to Lancaster a bit as I feel so at home there and have been trying to convince my husband to move there , so if you ever need another parent to talk to, as I do sometimes feel free to email me. While in DuPont I wanted so much to talk to you but my nerves got the best of me. God Bless you and your family.
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hi Krista!
I am so glad you left a message for me!!! Don’t have much time right now, but wanted to tell you I loved the music you played for Hannah…a wonderful reminder to me of God’s LOVE! And i wanted to visit with you too, but was a little too scared 🙂 If you ever come to Lancaster, please stop by! And thanks for your email address! You may be hearing from me :)))) Blessings and good health to you and yours! Anita
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