Sorry this past week's update is a little late. I think my exhaustion is catching up with me....
So we've been in OCH for a little over two weeks now and Eli is making great progress. I'm a little short on time and trying to get to bed really early, so I'll just do a quick day-by-day update based off what I have written in my journal.
Monday, August 13 - Eli ate blenderized green beans and black beans in therapy today. They also want to try the Quinoa (grain) soon, as well as mandarin oranges.
Tuesday, August 14 - We saw Dr. Oshutokun (GI) at Cook Children's Hospital in Fort Worth today. We will be doing a scope next week. He thinks the feeding tube will be long term due to Eli's high number of allergies. He also said the egg allergy is very severe and he will be writing a prescription for an Epi-pen. We will come back for a follow-up in October. He is wanting to do food trials of 2-3 foods at a time and re-scope every 3 months to check for eosinophils (evidence of allergic reaction in the esophagus). We are very excited to finally be seeing a doctor who seems to know what he is talking about! Eli tried the quinoa today. He did okay with two bites, then gagged twice, so they stopped.
Wednesday, August 15 - Cook Children's called today. The facility where they scheduled Eli's scope for doesn't take his insurance. They rescheduled it for this next Wednesday at the main Cook's facility. Since Eli's scope was changed, Adam will fly in early Tuesday morning and fly back to Lubbock late Thursday. We had our Care Conference. They think Eli is progressing really well. I get to start observing Eli's feeding therapy this afternoon and through the weekend through a window, then start being in the room on Monday! I observed Eli in Feeding Therapy. It was AMAZING!! He ate applesauce and blenderized black beans and drank Elecare.
Thursday, August 16 - Eli ate a new food today.... Avocado blended with Elecare! We finally have a diagnosis for the little bumps Eli has; a minor staph infection.
Friday, August 17 - Nothing new today. I think Eli and I are both just exhausted..... And homesick. Eli has told me several times today that he misses Adam and wants to go home.
Saturday, August 18 - Eli tried pinto beans today. His Speech Therapist is going to try and find something other than beans for him to eat. It poured rain this afternoon and evening. We were in a flash flood warning for a while. Grey, sandy, STINKY stuff backed up into our sink in our room. They moved us to a new room temporarily until they can figure out where to move us for the remainder of our stay.
Sunday, August 19 - Nothing really new today. Weekends are pretty quiet. I'm so ready to get settled into our new room and for Adam to get here on Tuesday! My cousin Jana came to visit today. It was really good to see her and have some company. Plus she brought me chocolate! (You can't buy good candy in the vending machines here.) Then Eli came out of Feeding Therapy and threw up applesauce and avocado all over me.... Needless to say, Jana's visit was cut short.
So there is Week Two!!! Lots going on! I am finally resting better, so I plan to have Week Three's blog posted on Monday! Thank you so much to everyone who has called, texted, sent cards, sent packages, and sent prayers. We are very blessed to have such amazing family and friends surrounding us right now!!
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