Today my little one and I had some back to back appointments at Children’s Hospital. I’m so thankful that we have such a great healthcare team.

Sometimes it’s really hard to have a child that looks so healthy on the outside (a lot of the times) but who is sick so much and so many people, those who never see that side, simply don’t understand. So I decided today that one of the things I wanted to start being much more intentional about is being grateful for the tribe that we have who have walked through our journey with us, who know the struggle, and who have prayed with and for us, and who have carried us through some of our hardest days with their prayers. It’s really incredible to think that it’s 2019 and the same people that are praying for her right now have been praying for her since 2013, when I was pregnant and very ill and cautiously expecting. My heart hurts to think that she’s been going through so much but wow, the Lord has done abundantly more through her life already in the past few years and touched more people through her than I could have ever imagined.

I was going through our papers and files, trying to gather the F-U-N stuff . . . y’all know what I’m talking about, T-A-X stuff!!! I was looking and we’d logged right around 8,000 miles in medical mileage for 2018. That may not seem like a lot but . . . it’s a decent amount. This little one goes to specialists at Children’s, her pediatricians, her urgent care or ER trips, her therapies, and to pick up her meds. Those miles sure add up. I’m sure there are a lot of times I don’t log things that I could but I have to live, too.

So at the doctor today some things changed up a little bit. We’ve increased her antibiotic a little bit. She’s been on the same antibiotic, for over 2 years, taking it 3x a day, every day.

She’s going to have another gastric emptying test done, because it’s been one year since her last one. She’s got two ordered . . . we’re going to try to get her to do the solid food test but if she gives us a complete refusal then we’ll just have to get her to drink the barium in her milk.

Depending on what the results show we may try Botox injections in her stomach again, to see if things change and if it’ll help. Then we’ll consider having surgery (a pyloromyotomy) or her getting a pacemaker. The only issue with her getting the pacemaker is that our doctor will be in Columbus, Ohio and we’ll have to go out there anytime there’s an issue, our doctor here wouldn’t be able to help us. But the pacemaker could really help her and we’re ready for new beginnings. He said these are our three options: Botox, Surgery, Pacemaker. So we’re just going to do the test, and consider Botox first, regardless of my personal feelings towards it. Then we’ll
“Eeny, meeny, miny, moe” the latter two options?

KIDDING! (sort of)

We’ll pray.

We’re also going to try a new thing with some formula! Yikes! Right!?! Haha! This kid that only drinks Pediasure . . . . well today her dietician at Children’s gave us some Boost to try again (Posie wouldn’t drink it last time) and then gave us some Enfamil Toddler Formula powder to start scooping up and adding to her milk. She DID gain 2lbs but hasn’t grow in inches. But nutrition wise, well she only gained weight because she’s been eating this candy (Rainbow Belt Stripe Candy) from Walgreens every day. I’m not joking. But the doctor said she’s at a good weight to enter into the intensive feeding program in Texas because they’ll usually lose a bit of weight at first, so she’s at a good starting weight. Oh, also we got in touch with Bethany’s Children Center and are waiting to hear back from them about possibly doing feeding therapy with them, too, until we go to Texas. I’ll touch base with the J.D. McCarty Center tomorrow, he said that was also an option.

We go back to the neurologist in March.

It may be a busy year, friends.

I ask that you would pray that she would get in to do her test soon and that we can get into the program in Dallas.

Love you all, thank you for joining us in our prayers!

“For where two or three gather in my name, there am I with them.” Matthew 18:20