Holding Pattern

Today was… disappointing. And stressful. AGAIN, I banked on making some progress and having a Plan and we got nothing.

I update here because not everyone is on Facebook and so many people love Lulu that it is overwhelming to have individual conversations with everyone; it is easier to put it out there and whoever is interested can keep up without me going through it 60 bajillion times. But the internet is forever, and I’m trying not to make super-public one symptom that Future Lu may not want published to the world. So maybe those people who know the details will have an easier time keeping up here, but the specifics don’t make a huge difference in the overall story. I apologize for being cryptic and vague.

In addition to the broken knee (12/27) and the crossed eye/double vision (ongoing since 1/6), she developed a new symptom on 1/15 which has also remained. It would not likely be a HUGE concern on its own, but it is significant enough that it is not something we can just ignore and it is probably the one thing of the 3 that bothers HER the most.

I started out a little dissatisfied with urologist visit. She thinks this new issue is unrelated to the trauma/eye, and should improve gradually (6 months) with behavior modifications during the day. But the list of “modifications” are all things we have ALWAYS done. So I don’t know why it would improve when these are not lifestyle changes for the most part. We go back in 2 months for a follow-up, but I just left feeling like that didn’t sit right. I am not pretending I know more than this specialist, but it did not feel like a thorough exam and I don’t feel like essentially “wait and see” is an acceptable response. Those of you who know me well or have known me for years know that I have ALWAYS had strong emotions and don’t shy away from expressing them – but I am also NOT a hypochondriac or prone to hysteria over my kids’ illnesses and injuries. I am much more prone to ignoring symptoms than overblowing them and I feel really strongly that this doctor maybe didn’t hear me/see the whole picture.

Then we headed over to the MRI… but, as we had anticipated was a possibility, they did not feel comfortable sedating her with her cold; we have to wait 2 weeks post any symptoms so we have made a tentative appointment on 2/28, assuming she will be better within this week. The injury accidents caused can be solved legally with the help of the right experts.

I literally cried in the MRI waiting area. Because she had a small issue related to the unpublished symptom and none of this is okay. And, like, it all MAY be coincidental and self-resolve but no one has given us any answers, really, and I can’t live like this without taking some sort of action. And there are kids in that building with brain tumors and cancer and all sorts of awful things and I feel so stupid bawling over her probable relative health, but that’s where I am.

I am proactive. My kid has a problem and I NEED to figure out how to solve it. I need a diagnosis and a treatment plan or even just a more FIRM wait and see approach – like “if it doesn’t self-resolve in 2 months then this is the next step…” As it stands, this feels never-ending and too aimless. I need expectations and a schedule.

I do understand that it is a positive that they have not found significant BAD STUFF (#notatumor), but the absence of anything concrete and conclusive is awful. This began over a month ago!

We ate lunch in the city because Lu was starving, having fasted for the MRI-that-wasn’t, and came home where I took a nap. I physically cannot function on the edge of this continual stress. Cole is also feeling a strain and HE went to bed at 5:30. We have an appointment to work on adjusting his medication dosage next week, but that is only part of the picture; he is sensitive and the changes and worry at home are overwhelming him.

So. Nothing new. Will update after 2/28, I guess.

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