Take the time to read the poem above and mull it over. When you have a baby you ” know” what to expect, you expect a trip to Italy, but when your baby is born with a condition you aren’t expecting you crash land in Holland without a map, no tour guide and you don’t speak the language. I am so fortunate that AJ is so healthy in so many ways. I’ve also been blessed enough to find a tour guide, a sweet friend who has walked this journey ahead of me. I am so grateful for each and every one of these step ups along this path. It’s been a tough summer, especially August and that leads us to the next leg of this journey…our next big adventure.
During this summer AJ started to have more symptoms; difficulty swallowing, choking (with or without vomiting), decreased appetite and weight loss. Currently her GI has her off of solid foods all together. You would think that for a child with a decreased appetite that it wouldn’t matter whether they could eat solid foods or not, but BOY DID IT EVER. She lived off of apple sauce. It got to the point where the hubby and I would take turns eating dinner. One of us would sit down to dinner with the other kids while the other one was on distraction duty…
…when it was my turn, that meant safe drinks at Starbucks and walking around Target until well past her bed time. We limped along and did as much as we could until we got to this point. The point when feeding my own child became a full time job and sometimes (many times) I failed at that job. I tirelessly documented every morsel that went into her mouth and every symptom that she had. I spent hours researching feeding methods and spent my days testing them out…anything so that she’d take another bite. FINALLY we were given an appointment by the Cincinnati Children Hospitals EGID clinic. We are counting down the days until we can meet with some of the top specialists in the country and get a better game plan for AJ. We’re looking forward to it like a vacation. And we plan on taking you guys along on the journey. I will definitely write a post about it and I’m hoping there may be a video as well depending on how hectic things get.
It’s more than an 8 hour trip, and the evaluation is 4 days, but we jumped at the chance. She was due for another endoscopy anyway so this was perfect timing. They will be doing the procedure at Children’s so that the top doctors can see for themselves what is doing on instead of reading what has been interpreted by two other people before them.
We haven’t even been there or met them in person, but just by our conversations both via phone and email I know in my heart that it’s where we need to be. They really seem to understand that there is an emotional component to not being able to consistently feed your child. They understand that it effects the whole family and that it isn’t always as straightforward as it appears. I received these reassuring words in an email:
“There absolutely is an emotional part of it. We are made to nourish and feed our children. We’re even built that way. So it definitely affects us if that doesn’t happen the way it should. It’s hard.We understand that. And you are the best advocate for your child. 🙂 “
So be on the look out for new posts. I’m hoping to post some about preparation for leaving and battening down the hatches at the homestead for while we’re gone and then updates about my little farm helper along the way. Thank you for continuing to be patient with me, I realize that I have been slacking a lot with posting and now really posting about the homesteading topic much anymore, but this diagnosis has really been all consuming. If you missed the diagnosis you can learn more here: Sorry I’ve been MIA we have a New Diagnosis… , Asher’s EoE Journey , and Rocks Along the Path: More of Asher’s Journey .