Here's how my day went yesterday:

Phone call
Coffee
Phone call
Panic - Annabelle's fever is dropping
Phone call
Coffee
Phone call
Schedule an appt
Phone call
Phone a friend for help
Check on Mady
Phone call
Call the GI, leave a message
Call Hospital
Call Radiology
Panic - Annabelle's fever is spiking
Phone call
Phone call
Respond to texts, thank people for help, send love to those that are melting my heart with selfless love for my baby girl
Phone call
Shower
Phone call
Phone call
Phone call
......

Trust me, there were a LOT more phone calls in there ;)

There was a lot of scheduling that was being done yesterday. I touched base with our pediatrician and her amazing team of nurses working for her many times during the entire day. She was working on scheduling the soonest MRI and also the Neurologist. I was doing the same, but by using my own resources and 'who knows who.. and who can pull which strings' / type of deal. We kept each other up to date with the changes we were making throughout the day.

By last night we had an appointment with the Neurologist at MCV Children's Hospital on Tuesday at 10am. We also had an MRI scheduled Tuesday at St. Mary's at the exact same time. I refuse to let go of either of those appointments and kept them.. my goal all day was to have an MRI scheduled before we see the Neurologist. I ended up getting in touch with someone high in Radiology and explained how upset and desperate I was to get my daughter care right away. I told her that we were seeing a Neurologist at MCV but I was sent on my OWN to get an MRI elsewhere before the appointment, that is NOT ok! The poor lady poured her heart out to me and said she will try her hardest to pull strings and see what she can do. I hope my sob story worked.. I need Annabelle seeing that Neurologist Tuesday, but I want that MRI first. I did confirm that when we are finished with the MRI, I will be able to leave the hospital with the disc to take straight to our doctor at MCV.

There were SO many other conversations that were exchanged throughout the day between various hospitals and doctors. I touched base with St. Mary's several times to go over the long questionnaire for anesthesia (since Annabelle will have to be completely sedated for the MRI). I wanted to speak to our GI for some odd reason, I think I was desperate for another MD perspective, and I just really wanted to rule out this being a GI concern. His nurses (all of CHKD) are truly so amazing. We discussed the story several times and he finally called me back and we talked for a while about Annabelle. He was puzzled and we discussed the possibility of this being a reaction from the Elemental Diet she is on, he said we would not be seeing symptoms like this. I asked if there are any concerns after the last scope he performed and he said, "If this were appearing a couple days after the scope, maybe, but not 4 weeks later. This just cannot be GI related... I can't agree more Ashley, I think you need to be in with a Neurologist immediately and begin scans. Also know, we do have a great Neurology team here if you ever need second opinions". It was reassuring to talk directly with another doctor, and I felt better knowing this absolutely cannot be EoE related. . . well, maybe I didn't feel *better* but I did feel like I am definitely heading in the right direction.

Monday I have an appointment with our Pediatrician for Annabelle's physical so she can be cleared for Tuesday's MRI. I am hopeful we can have that moved up before then, but the phone calls aren't coming in fast enough to tell me so. Fingers crossed.


Annabelle did well yesterday. Her temperature began fluctuating a little before her first nap, and we took advantage of her feeling 'tired / weak' and laid her down. Her temperature never changed during her naptime and she got plenty rest. My grandmother showed up around 10:30am with a bag of snaps, cucumbers and fresh veggies from the garden. She had her toes in the dirt that morning and came by to give us a break. Gosh I love that woman. She demanded I go take a shower and enjoy a lunch. I did need to eat, I haven't done so in days. And good gracious did I need a shower! lol. It took me two hours from juggling phone calls until I could break to take a shower... with my phone next to me on the towel rack in case a hospital called! I then took two hours with a towel on my head before I pulled myself together enough to walk out the door. AK and I had good intentions to enjoy a nice lunch, but the second I got in the car, I didn't want to drive far from Annabelle. My phone wouldn't stop ringing so I told him to just take me to Target to pickup the essentials I have been needing and then let's go get Mady. Gosh I missed her! I walked around Target completely silent. I bought the three things I needed and left without spending $20 (now we know there is something wrong!)

I feel like I am walking around in a haze. Like everyone is walking past me with healthy children and laughing and playing. I want to tap them on their shoulder and say, "Squeeze your baby. She's healthy". When the checkout lady asks, "Hi! How are you today?" I respond with a sincere smile and say, "Im doing well, How are you today? It's really getting hot out there, huh?" I feel like I am lying to everyone by wearing a forced smile on my face. I won't listen to the radio. K95 or 93.1 I can guarantee they aren't playing anything I want to hear right now. Im just numb. I am walking around like the biggest liar, faking happy smiles and playing tickle monster every chance I get. 

When we left Target, we headed straight to get Mady. I sat on our friends couch and we discussed briefly what was going on. I was so tired.. it hit me like a wall as I sat there with Mady under my arm and my feet curled underneath me. I guess the warmness of their home and the comfort of a good friend was just enough to make me exhale.. except I really wanted to fall asleep. lol. I was so happy to have Mady with me again though. I've really missed that little girl and I know she's missed us. You can really tell all this craziness is starting to hit her and she's putting her guard up. I just hope she understands that we are doing the best we can to help Annabelle and love them both so much. Soon all this will be over and life will resume into our normal chaos, but right now, Mommy needs to take Annabelle to lots of doctors to get her help. I know she can't understand, so for her sake, just as much as Annabelle's, I hope this ride of hell is over soon.

When we got home, the storms began to roll in. We had some great storms last night.. but of course, in the middle of them, Annabelle began to spiral downhill. She was playing just fine and then ran over to me as I sat on the couch looking out the window. I am a sucker for a good storm, the louder the thunder, the better :) I thought maybe she was scared from the storm, but then she wouldn't move. I checked her temperature and it was around 95. I didn't know what was next. Is it going up or down? I asked AK to get another thermometer and start checking it. It went up.. 99.. 101.. 102. I checked it rectally and confirmed. It didn't drop last night though, fortunately. It just spiked pretty fast and remained around 100. Annabelle laid on me for about 30min until I felt it was ok to try to get her to bed. I don't like laying her down if I am anticipating her temperature moving again, but after 30min I thought it was ok. And it was for the night.

Today I hope to make headway on appointments and get them moved up. I hope we can safely make it the days until we see a doctor.