So done with this verse...

Well the good news, the okay news, or the bad news?

Let's start with the okay news; the meeting to slap the PIA woman we were dealing with went well. Not great, not bad, just well. She will at least (so she says) respect my place as Alana's mother and NOT give me any more shyt about the fact that we do not have a clear-cut diagnosis for Alana (in regards to the overall picture). McDr has already told this woman that that does not negate a single thing that is going on with Alana. We ended up coming to an agreement that:

1. I do, not only legally, but on the because-I'm-her-freaking-mother, have full access to any information (that's done on paper) about Alana and she cannot deny me that.

2. She will no longer question us if we say something. Alana's care is not up for debate! Either take care of her of step the hell outta the way so someone else can.

3. The mediator that we had help us with this, Larry and I, and the "woman", will now be having biweekly meetings, only 20 minutes or so, to make sure we are all stil on the same page.

So like I said, it was okay.

On to the good news. McDr has been talking with Dr. Y (Cincy) and they'd like us to come back and have another round with the whole team. We've been aware that we were going to need to do this soon anyway but now that it's in the works it's kinda scary. How can that be good news? Well Cincy strongly believes in a team approach to care and even though we have McDr who, in my opinion is the greatest thing since sliced bread, having a pulmonologist, neurologist, gastro, immunologist, etc. all working together as 1 cohesive unit is great. McDr will be the leader of this band so that is even better. Dr. D that we work with here will still be our right hand man so that's icing! I don't know when we are going to go, I've requested not until March-ish so will let you know when I know.

Alright so I have some shocking news to share with you...I know it's going to be a huge surprise and all so here goes...remember how I told you she was getting sick?

Ear infection and pneumonia. Her g-tube is completely irritated again and we are back to caking medicine on it. She's gained NO weight in the 3 months that she's had the tube itself and we have to go back on Wed. to see if we can head to my parents house for Thanksgiving. There's no use crying over spilled milk right? It seems that this fall has been hard on even children with no underlying issues but really?! Didn't we just sing this song and dance a month ago?!?

It's a reindeer mama...

Okay so not to be a whiner here, but I think she's getting an ear infection. Argh! She came up to me a bit ago saying that her ear was hurting her and like I said, shes been off anyway. Good thing McDr called today and we talked for awhile and she said (before any mention of ear pain) that she wanted to see her and get some labs done that Dr. Hahn (Seattle) wanted so on Friday we will go ahead and go in.

We've been dealing with a lot of peeling piggys :/ It's happened to her since birth but it still hurts to the point that she won't walk on her feet. We've tried OTC remedy's, 'script ones, etc. and nothing helps until they've completely skinned themselves and start to regrow. This usually coincides with other strange things like her need to have a lot of sugar to get moving. I am not talking about candy but more along the lines of woke up screaming>Larry and I restraining her>forcing her mouth open>dumping juice into it and then from there we do it again until she swallows it and it takes about 60 seconds for her to calm down and realize that she's alright. Then she will guzzle the juice down and be a completely different child than she was 10 minutes ago. ???? Anyone care to pipe up with an answer 'cause we've got none!



Both my brother and my mother are really sick with some wicked stomach virus crap that is going around and I have banned them from my house. My mom lives 90 minutes away so that's not a big deal and my brother lives 45 minutes away but still, unless they are in Hazmat suits they are banned until further notice. Larry thinks I am crazy...I happen to disagree, I think I am perfectly sane.

Tomorrow morning we are going to go and lay a smack down on some woman who thinks she knows our daughter better then we do and even better than McDr. This has been an ongoing battle that we've been dealing with and the proverbial straw was broken today and I am not sure what she thinks she is doing. McDr is frustrated with this person and I am thinking how much jail time I'd have to spend if I just did the V8 commercial to her forehead along with a heaping of "here's your sign" but again...Larry thinks I am crazy. If you've ever had a child or loved one with any sort of malfunctioning system then you know what I am talking about in this lady--she thinks that things are ALWAYS by the book and things ALWAYS follow a set path. She clearly is not a member of the "A" team.

Moving on...



I was taking some pictures of what it means to live in Alaska and some of Alana outside (in 0 weather. And yes, schools here go outside until it's -10..m i n u s 10) and as we go to leave when what to my wandering eyes should appear, a moose making a traffic jam with nary a care. (OOO I can totally quit my day job and be poet) so we got some nice shots of a pretty typical day around these parts, wildlife and all.






You all in the "lower 48" remember my frozen toes and cold fingers at -3 (current temp) when you are enjoying your +60s and 70s!!

1, 2, skip a few...months that is...

It does really feel like that to me at least. This month, well actually last month, zoomed by at super speed. Things are holding steady here though. We had a wonderful birthday party, and yes, I was surprised with some gifts of my own as well! We had fun making our pumpkins this year although Noelani was being grouchy and wouldn't let me get any photos of her (I did sneak some but won't post them so she doesn't have a tissy-fit).


Alana's party was rocking and she was a skeleton-bat-girl and she was amazing. She did great overall and Noelani and Shaylin looked wonderful! Shaylin was a "glamor" witch and Noelani was a nerd. The funny thing with Alana was that she was actually an x-ray, not a skeleton. Go figure, my radioactive girl wanted to be an x-ray!

Halloween was a bit of a bust as Alana didn't feel well and then as we go to leave Shaylin threw up on the front porch...wonder-freaking-full lol. It was such a comedy of errors that I was ready to just go and hide under the bed myself. But being the fantastic parents that we were we went ahead and took them for a quick 30 minute trip to get some candy and at least try and have fun. It worked and they did have fun so all was right in the world of candy land. For Shaylin it seemed to be something she ate because she was fine later on that night and from then on. Alana has been in a perpetual state of unrest lately. Not bad but not good either. Confusing is more like it but again, if that wasn't the case around here then things would really be messed up right!

She is adjusting to her feeds, slowly. McDr cranked her down even more, she's now at 78 mL/hour for 2 hours. Oh and she is also on a pump now in order to do that. We had been pushing her 4 ounces via a bolus feed but she was having so much pain with that we had to come up with a better plan. We then tried 118 mL/hour and that still was hurting her so here we are. She's uncomfortable to some degree but it's better so we are going to try and just hand onto this and see if she can work through it.


We did also have her 6 year check up and even though we knew that she was FTT (failure to thrive) and was struggling with her height as well but here's the break down: On November 4 2008 she was 45.4 pounds and 42 inches tall. On November 3 2009 she was 43.8 pounds and 43 inches tall. Now if she was a 18 year old that might not be a cause for concern but being 5-6 it's a huge bummer. It's all good though, this is why she has a feeding tube now--we've just got to figure out her GI system and we should be golden!


There's been more going on, isn't there always, but for tonight I am going to wrap it up. On I will go over the rest of her appointment and what's been going on at PT & OT (increase hypotonia) and what we are doing in preparation for her care conference and what the deal-eo with the mitochondrial testing is. No I didn't forget to tell you about it, I've just been keeping it close for right now until we have some information we've been waiting on. I am getting sidetracked though so let me stop while I am ahead!

I'd also like to thank Rattles for her kind words and warm heart. She has honored Alana's site with an award and I wanted to sincerely thank her for that. She herself is an amazing young woman struggling with what life has challenged her with and she's doing this all with grace and laughter.

It's been so long...

Okay--tried to upload the post and the pictures tonight but blogger is being a pain in the arse so I will upload tomorrow! *grumble*