Appointment Update for Banshee

Today Banshee and I made our way to the 'local' specialist. The one that's ONLY about 45mins away, or in today's situation, when I followed an OPP officer the ENTIRE way, a tad better than an hour.

I'm what you could call 'experienced' in these trips, so I have a mental checklist of what I need to bring along - you know, the important stuff; 1 Juice Box (100% real juice Del Monte fruit punch - don't mess with this, it will cause A LOT of grief! And don't bring 2 . . . it creates 'peeing' problems); the Strawberry Shortcake lunch bag filled with various treats and snacks; a fully CHARGED Nintendo DS (although I'm technologically *all that* and have a charger IN the van AND my purse); a diet coke for Mommy; books; colouring stuff; the old pink iPod shuffle (for the love of God make sure it's CHARGED); the Strawberry Shortcake med bag (complete with all the various puffers floating around this house); $5 in change for exit parking(I can't tell you how many trips I made and got STUCK at the damn exit because I didn't have the correct change); and my list. And can you guess what I forgot?

Yep. The list. Forgot it. On the counter. But I remembered everything else.

Before we leave I make Banshee squeeze every last drop of pee out, then I get her all settled in the van, armed with all her 'stuff'. And we head out. Barely 2 mins up the road, it starts. "Mommy? Are we there yet?" Oye. Every few seconds she spouts off "Mommy?" then follows it up with whatever important news or questions she has. I am proud to say that we only had to stop ONCE on the way there - and that was conveniently at Tim Hortons in the town next to us. The one 5 mins up the road. Of course you can't use the potty without buying something . . . so I did. Got me a caffeine fix. And Banshee a potty break - because it's not like she just squeezed all her pee out 5 minutes before at home.

The drive there was uneventful, and amazingly, we got INTO the parking lot with no wait at all (I usually have to wait until someone leaves and frees up a spot. Parking at this hospital is hard to find). As we were getting out of the van, a woman, seemingly quite pregnant, ambled up to me and started in on a spiel about how she was 6mos pregnant, had a 10yr son as well, and had recently relocted to this city through a women's shelter as she had left an abusive situation. She has been in process of setting up a new apartment and life, but of course there are expenses associated with it. She stated that she needs to scrounge together money for groceries. For her son. And her unborn child. I had very conflicted feelings about it all. While I know the possibility of this being real and true is there, I've also been screwed or duped on many occassions in the past, so I'm skeptical of this kind of thing. I also know that the social programs here in this province are incredible and that she should be able to readily get food through them. So I apologized, but declined to offer any money (and the truth be known, aside from the $5 that I NEEDED to get out of the parking lot, I didn't have any cash on me anyway). Then, right there in front of my 6yr old child, she says very matter of factly "FUCK YOU", the walks over to the sidewalk where she proceeds to open a CARTON of cigarettes and lights one up. Yep . . . I think I made the correct decision on that one. Call me what you may, but if can afford to buy cigarettes, then I'm certain you can afford a loaf of bread or something. What I REALLY wanted to do was call back "No fuck YOU. And I hope you choke on that cigarette". But that would be rude, and I'm not like that *at all* (OK . . . I know. For those that know me REALLY well - I know that you're killing yourselves laughing because being laid back and NOT having the last word is SO not my style. You'd all be proud. I just turned around and walked away. And bit my tongue. HARD. It STILL hurts).

Anyway, back to the appointment . . .

We went in, did the usual weight and height thing . . . because she's probably grown in the past week and all. Just kidding, I get that it's a totally different dr, it just seems redundant to have to do it every appointment when we're at them so frequently. Of course nothing has changed from last week. Or from 2 months ago for that matter, but that's OK, she hasn't lost any weight, and that's what counts. We discussed "The List" of concerns/issues, and one by one, we cranked them off:

Breathing: Pretty good. She's maintaining the status quo. This is traditionally her 'good' time of year (although the deep freeze the past few days played havoc for her), so we don't really expect anything different. She will follow up with another appointment at the Pediatric Hospital in March - complete with PFT (pulmonary function test) and exercise PFT. No med changes necessary.

Tummy Troubles: Again, maintaining the status quo. We are currently waiting for news from the testing last week (re: celiac disease) and are awaiting a date/time for the scope and biopsy's. This will likely happen in February.

Headaches & fatigue: Seemingly getting a little better. She's not complaining nearly as much about the headaches - just a few here and there. The tiredness is very dominant still. That is one of my biggest concerns. She has NO endurance for ANYTHING anymore.

Memory/Seizure activity: Her short term memory is still wonky, and she presented with it even while we were there (asking or telling the same things over and over, but not realizing that she's already said it). In terms of seizures, we haven't observed any episodes (spacing out, pausing at 'inappropriate times') in recent times. The EEG she had back in the fall was inconclusive (she was MOST unco-operative, but really, what would YOU expect with a grossly sleep-deprived 5 year child?!). They don't really want to have to sedate her to repeat the test unless they have to, so they're holding off, hoping that as the adrenal issues resolve themselves, the memory/seizure stuff will resolve as well. And we're OK with riding that out.

Adrenal Suppression/Cortisol Deficiency: We don't know. They pulled her off the 'offending' medication at the end of November, and are waiting for 3 months to pass before we retest the levels. I guess it takes that long for the medication to clear out of her system, and time for the adrenal glands to (hopefully!) start doing what they're supposed to. We are armed with a requisition for blood tests at the end of February.

She is a SUPERSTAR at using her puffers and aerochamber - the assistant even used the word *PERFECT* to describe it. So, on a whole, things are OK. Not fantastic, but not grave either. Banshee's doctor is AWESOME. We are VERY blessed to have the specialists that we do, but special kudo's need to go out to this one in particular - she goes above and beyond the call the duty with us. She understands my worries and instead of dismissing them, she does her best to reassure me that they're doing all that they can to help her. Banshee's situation is a bit unique - everything about it is 'different', so she's been a learning curve for all involved. While I DO get frustrated and upset at times, I also know that she's going up to bat for us and looking out for Banshee.

We left that office armed with another appointment for April and prescription refills for various medications.

Actually . . . I FORGOT the prescription renewals (thankfully they faxed it to our pharmacy), are you surprised?

We drove home, stopping for some retail therapy while we were at it; because every co-operative and brave little girl always deserves a reward, right?! And of course she chose a doll - complete with a bazillion accessories that I'm already cursing.

And of course she cut her finger. Badly. With scissors. While impatiently trying to OPEN the said doll - even though I told her that I would help her momentarily.

And of course we didn't have any 'kid' bandaids . . . in fact we don't have much in terms of ANY bandaids, so that set her off.

And that my friends, is why she is called Banshee.