Today I embark on my (hopefully) last trip to PA to go to Johns Hopkins in Baltimore. And this time, I'm taking both my girls with me- yay! I did not enjoy leaving both of them the first time, and I didn't enjoy leaving Cami last time....now I have to leave Jake behind this time. But I think he has enough work, extra games to be at, and duties as Ward Mission Leader to keep him busy. Cami is super excited to go to Grandma and Grandpa Toone's house, and to ride on the plane today. We have a layover in Chicago, and I'm hoping I make it through this day smoothly with no catastrophes. I will have Lexi in her carseat in the stroller, and hopefully we can take her seat on the plane and snag an empty seat for our little lap child. Otherwise she will be a little squirmy worm on Cami's and my lap. We'll also have a diaper bag, purse, and Cami's backpack and Lexi's carseat base all in tow as we mosey through the airport. Heaven help me.
We fly into Phillly late tonight at almost midnight, so we won't get home to my parents house until after 2 probably. PLUS, it's supposed to be snowing there tonight too! It'll be an adventure. I really don't have anything going on at Hopkins until Tuesday the 13th, when I go in for a retrograde endoscopy, endoscopic ultrasound, and pancreatic testing all in one procedure. AND, they are going to take my feeding tube out! Yaaayyy! (I will be so sad if I wake up and it's still in. So let's hope all goes well and I can get rid of this thing). Then I just need to learn to sustain myself with a special diet of all the nutrients I need, still following the FODMAPS diet and being gluten free, dairy free. I'll start adding things in as time goes on, like maybe soy first, then eggs, then the fruits and veggies I've been avoiding, then dairy.
It's hard to say what's going on with my body. I feel ok and am looking more normal and my hair's growing back, which is lovely. But I'm still bloated most of the time, and have aches and pains and pressure in my abdomen area. A lot of times if feels like that weak, sore feeling you have after you've been really sick and have thrown up repeatedly and your stomach is just worn out. I just want to feel good again. And get stronger. And build some muscles, and be able to flex my abs again.
But I AM grateful for the progress I've made. I've been off my coumadin (blood thinner) for about a month, I've maintained a steady weight around 135, and I've had a lot more energy. My Iritis is getting better too, we think, and I'm down to eyedrops once every other day. Baby steps, baby steps. So I just hope this trip will be beneficial for my health, and that they'll be able to see/find out what's going on inside me and that I'll have a little more direction. It kinda sucks to have to tell people when they ask if I know what's wrong with me yet, "Uhhh not quite sure still. Celiac? Gastroparesis? Just hangin in there."
I know it's going to be a fun trip, regardless, and I'm so glad the girls and I can enjoy some time at Grandma and Grandpa's house. I'll update when I have a worthy update. :) Now, wish me luck for the plane ride!
2 comments:
We're praying for you all around---plane ride, doctors, feeding tube, etc. :) Have fun and be safe!!
Look at you rockin' the 135 lbs! I had no idea. :) That is awesome. I really hope you are welcomed with good news this trip. It would be exciting if you could survive without the feeding tube-- no more face tape! Also, I always remember being so envious of your ab muscles and your flat stomach. You'd lean back ever so slightly to flex your abs and they were rock hard. Let's get those back! :) If it makes you feel any better, I don't have flat abs. But that's my own fault. Anyway! I love you lots and hope you have a fabulous trips. HUGS & KISSES!
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