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Going against the Dr

“For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you.”
—Isaiah 41:13

Reagan was fever free until around 6 pm. But at dinner, she was shivering and yawning (it was a no nap day). After getting home from an inspection, Rob had Reagan in the bath trying to cool her down. Her temp was at 101.

During the bath, Reagan couldn’t stop coughing and threw up. After the bath she was still hot and shivering…she fell asleep in Rob’s arms and we gave her the usual night time meds and some ibuprofen. About 10 minutes later she threw up out of a hard sleep, while in Rob’s arms…her fever was 102.7…

She looked awful and was moaning and so exhausted. We took her temp after giving Tylenol and a cool compress and it was at 104.5. The genetics Dr. told us to go to the ER.

Rob had the composure to say no. He looked me dead in the eyes and said, “we’re giving her a bath and trying to bring it down here. It will be faster than the hour it will take to get to the ER and then be seen, and what will they do?”

So to the bath we went, and she hated every moment of that cold bath and the wash clothes on her back and forehead. After that,
we took her temp the old fashioned way (sorry to your little bum Reagan). And it was 102.7…our dr was on our heels texting and telling us to take her to the ER if her temp didn’t get below 101 and reminded us that Tylenol takes effect within 20 minutes.

For us to stay home, God needed to show up.

Next check was 101.8, and a few minutes later it was 100.3.

Rob told me he felt like God was clearly saying, “stay here, do not go, and ask for my help.”

And when Rob looked me in the face and said with authority, “we are staying, do not fear…Jesus didn’t have fear when he went to the cross, he trusted God. God has Reagan, nothing can happen to her unless he says, and staying here is better than going to the hospital. What can man do that God can’t?”

So we stayed, and we gave meds, did the bath and we prayed for healing to come fast. And God showed up.

Tonight we still have to feed her at least two more times to keep the calories in her. The last feeding she coughed a bunch, but I just prayed with each cough it was her last…and as I’m wrapping this up she’s stopped coughing (mostly) and is finally sleeping peacefully.

If you’re reading this, please pray for her tonight…

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Surgery Emotions

Rob and I took Reagan to the ENT today b/c of the multiple ear infections, constant fluid in her ears and two failed hearing tests. After a check today, surprise surprise, she has fluid in her ears. They also asked if Reagan snores and we said yes, so we get a bonus surgery of adenoid removal. And it’s happening tomorrow.

surgery
Rob and Reagan at the children’s hospital earlier this week for her regular blood draws.

I’m a little weepy. I know this is a routine surgery, but things with Reagan are anything but routine. Two years after being in the hospital for her metabolic crisis and brain injury, we’re right back there, almost to the day, having surgery.

On top of that, I’ve received some hurtful messages from people recently. And while these aren’t the exact words being shared with me, the message I’m receiving is clear. I’m not worth spending time or energy on, I’m not worth being celebrated and neither is my daughter, I’m an embarrassment and my life choices aren’t up to par with theirs. It’s really negatively affected me, especially during this time of year when my emotions are literally all over the place. (So a surgery should be the perfect pick me up).

Hearing stuff like that makes me feel really small, unimportant and terrible inside. Rob and I try very hard to be great parents, to be there for our friends and to also make our parents proud…all while trying to have record sales in business and be available to our customers. The demands sometimes seem impossible. While it appears to us that everyone else is moving perfectly along in life, we’re working on the “Mmm” sound and the “Ppaa” sound and the “Daa” sound, we’re scheduling surgery, we’re working on trying to drink more than 6oz of formula by mouth. So to hear that I’m not enough…how can that be true? How can someone have that opinion of me? It hurts.

I just want to hear what Reagan has to say, with words from her mouth. I don’t want to feel like Rob and I are always in a life raft, alone, waiting for someone to rescue us. I want for Reagan to be able to just be a kid and enjoy being a kid, instead of having to work so hard at everything that comes naturally to me and you.

Hopefully this surgery will help her talk more by helping her hear more…if it constantly sounds like she’s under water, it would certainly be tough to mimmic the sounds we’re all requesting right? And if she’s constantly fighting ear infections, then drinking formula would be more difficult and possibly painful, right? This surgery should help in a lot of ways. I really hope it does.
Thank you guys for your prayers. xoxo

**update** surgery is canceled due to Reagan vomiting and having a 102 fever. Pray we get through that quickly!