Special Kids

We are packing up to head home again. Can’t wait to be in our little apartment house and watch Kobe play and watch him scarf oatmeal down (something I didn’t do at his age πŸ™‚ read him books and hear him say things like he did the other night at Linda’s house. “Pee. Bubbles. Bath. Bed. ” In that order πŸ™‚Β 

Kierra seems back to her baseline. We are thankful and praising God! I always forget how the adjustment of getting home is so good it’s almost overwhelming and my emotions are all over the place usually. So pray for all of us πŸ™‚ that we could ease into the daily routine again.

My favorite verse of the morning that I hang onto like a lifeline and ask God to create in me…

“I do not live anymore. It is Christ who lives in me. I still live in my body but I live by faith in the Son of God who loved me and gave Himself to save me.”

Cheers to the weekend!!!

Special Kids

Choosing To Believe


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 Β thing that was So wonderful Β 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 Β 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 πŸ™‚


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.

286mornings in bed πŸ™‚

288the second he hears Kierra choking, he races for her suction and runs the switch for me. He takes his job VERY seriously! πŸ™‚

363#2.jpgwe 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 Β “it’s dirty” πŸ™‚ It really was stained. Honestly. He happily walked the other way . Hmm… Is this really my little boy? πŸ™‚


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 πŸ™‚ 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 πŸ™‚ 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.


Missing these two guys and hoping to see them tonight!!!!


Special Kids

hard breaths

Yesterday morning when the nurse left at 6AM she reported that Kierra was breathing really rapidly. I wasn’t too worried since she does alot of shallow belly breathing regularly.
I had appointments every day last week with her except Monday and Saturday. I had even taken her to The Clinic of Friday because she was doing weird stuff all week. Like vomiting when the Dr.says it’s impossible since her nissan /funda surgery that was still intact a few weeks ago. She had no fever and no other signs of a virus really.
So I was holding her Sunday morning, counting her respiratory, getting her breathing treatments ready when she suddenly started breathing very rapidly. She had been doing well on one lifer of oxygen. Now she was struggling to hold her own at 3 liters. Her machine maxes out at 3. I hollared for Steve and watched as her heartrate dropped into the 70 s and 80s. Her oxygen was hanging low in the same numbers. 90 is barely acceptable for oxygen numbers, and she wasn’t hitting anything much higher then that at all. We gave her a breathing treatment, and called the on call Dr at the Clinic. She advised us to take her to the ER in Deleware if she continued to struggle.
I called Linda Fisher to see if we could drop Kobe off on our way.
Here’s the amazing thing. I had barely got off the phone with her when Kierra started stabalizing. Linda had promised to pray, and somehow I knew she would immediately.
We threw things together, dropped Kobe off, and headed out. Kierra stayed at. 100% oxygen level all the way pretty well. And she was only on 2 liters!
We felt a little weird walking into the ER with her, but were too concerned to just take her home.
I am sure the church and friends and family were praying. Although her chest xrays showed lots of fluid on her lungs, her lab work came back much much better then I ever dreamed it would! I was so thrilled!
Today they did another xray and saw a definant improvement so that’s encouraging!
She is still on a Vapatherm. Which is in my words, glorified oxygen. They don’t know what the cause of her rapid breathing is right now since quite a bit of fluid came off with IV Lasix.
We are hoping and praying she will breath easier and be weaned back to regular oxygen!
I’m exhausted so good night. Thankyou for your prayers! It is such a faith booster for me to know God really does answer positively! And when the answer is No, then He is always there to hold us through it. Because He promised. And God NEVER lies or backs out!