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*

Buckle your seat belts...

'cause this is going to be a long one. So yes, we are alive around here, crazy, but alive none the less. Noelani is fine and by all accounts so far our house has been spared anymore outbreaks of H1N1.

We have had a LOT going on, here's the synopsis before I go into details; Noelani turned 14, Alana had a delayed gastric emptying scan, Alana's new 'chair' came in, Alana's new chair was not put together properly so she almost went out of it head-over-feet, Alana's tube stopped working and started causing a lot of pain, Alana started walking weird, Alana's autonomic system has decided it no longer wants to play nice, Alana had a g-tube barium study done, Alana asks me "Why do I sleep more than anyone mommy?" and the most important, most amazing thing is happening next week...Alana turns 6.

Did I mention that Noelani turned 14?!? Wow...how'd that happen? Here in Alaska that means she is old enough to drive now (with an adult) and she is studying to get her permit. She is so smart, beautiful and caring that it shocks me how all those things can fit into one package. She had a wonderful birthday and I think she got everything that she wanted, which wasn't even much. We had a family party and it was great to have everyone over to share with. She is such a young woman now that it makes me sad, yes sad, to watch her grow up so fast. I am also happy and awed by the fact that she is such a young woman.

*sigh*

Moving on to Alana...We had to do the DGE scan to see if that was causing the back-up of her tube. We've still been unable to get more than 4-5 ounces into it and that's taking awhile all in itself. It started with it just backing up and not moving anymore down the gravity feed, then it moved into pain and screaming with her asking/begging us to stop putting things into it. The thought was that she may have delayed emptying of her stomach and by us pushing things into it it was causing her stomach to be over inflated, i.e. stuffed. I've not gotten back the official results of it yet, just that our doc sent it out to be read by the GI and he has yet to respond to it. Go figure.



Super-duper cool is that fact that her chair came in. Not so super-duper cool is that the DME didn't put the straps on correctly and when she fell asleep in it the first time she tipped over (like she does all the time due to the hypotonia) and if little miss Shaylin wasn't paying attention she would have landed on her head in the store. I had questioned the straps when we picked it up and was told that it was suppose to be that way and once she was in it fully and all the buckles tightened down she'd be fine. Again, lesson learned...ppl who deal with medical things all day long can be the dumbest ppl to ask medical questions. As I am walking out of the store, trying to get all the pieces of the straps off the ground ('cause the are now completely falling apart as she's thrashing b/c we had to wake her up) I am telling the receptionist at the DME "I DON'T CARE THAT _____ IS BUSY, PUT HER ON THE PHONE NOW!!" and then calmly try to explain to her that the straps are NOT alright and that they are going to fix them first thing in the morning.



Whew. When I get home I am telling Larry this and he brings it inside and we start looking through the owners manual and going online trying to find pictures of how the straps are suppose to look. Low and behold they are not on right, you are shocked I am sure, and it takes us 2 hours and pulling apart the chassis and fixing all the straps. Woudln't you know it once they were on right she was golden! She could no longer get out and was comfortable. Now that that is fixed though it is all that we'd hoped it would be. It fits her great, she loves the tilt feature and her feet are braced in a comfortable position. It weighs a bit but it is so worth it! She picked out the colors and says it reminds her of spring so all is good.




Moving onto the next few issues all in one ball o'wax. We kept trying to push fluids through her g-tube and then we no longer could. We'd get 1/2 her meds in and then she'd be doubled over crying in pain and begging us to not touch it again. McDr is seeing her almost every other day at this point b/c we are still working on clearing the pneumonia and sinus infection and she tries to palpate her stomach and that brings on an autonomic bump with flushing, eye drooping, temp. dysregulation, etc. and she, McDr, decides that she will call Dr. Dipstick and ask him what we should be doing. Dr. Dipstick agrees that this is not right at all and now wants to check the placement of the tube, the tube itself, and her stomach in general again.



Today Alana had the g-tube barium study done and there's good news and not so good news to report there. The good news is that it is not the tube itself and it doesn't appear to be her stomach either. The not so good news is that after they were done with pushing the barium in (20 mL) they wanted to flush it with some water and the fun began. By this point they had turned off the machine and were all done, nurse was just pushing the water and I was getting my stuff done while telling them that 20 mL is usually fine, it's once you get to the 3-4 ounce that it starts to be a problem. As I am telling her this she is still slowly pushing the water and I notice that Alana is no longer talking but withering on the table and flushed. Now she starts to moan and say it hurts please stop. The nurse turns back on the machine and takes another look and whatever it "is" appears to be something to do with the small intestine. We couldn't do anymore b/c there was no order for a "small bowel follow through" so they took what they could picture wise and instructed me to call our doc and have them write an order for that, the small bowel thing, so we can see what about her small intestines is causing her pain. Round and round the mulberry bush the monkey chased the weasel...

Wrapping up here; pt has been hard. She had to stop 25 minutes early today and as the PT said, she was done 10 minutes into the session. We are hoping it's because her core is so out of whack but she is walking very odd. Alana's gait has never been a big noticeable problem, sure she falls down a lot and runs into things but it's mostly due to her proprioceptive problems vs. her gait. Well now she is having major gait issues. It's hard to describe but she's throwing her feet out, left, right, left, right, and walking like she's trying to completely flatten her foot down without using her heel. She is so incredibly fatigued that even after taking a 3 hour nap after pt she is yawning beside me and it's only 5:30.

I wish I could answer the question that she asked me...how I wish I could not only answer it, but make it better and not so. In the meantime though I am going to celebrate and grant her her wish that she be a princess bat for her birthday and we are going to play games and have pumpkin cupcakes and laugh and sing and be ever so grateful that Alana will be 6 in Tuesday.


P.S. If you saw "Alaska State Troopers" on NatGeo you have seen my dad!

The promised update...

See, I didn't forget to update =) I can report that I am working my way back from my trip to the land of pity and woe's-me. That's a vacation I have been taking a lot lately and I am not sure why. I know that sounds dumb, the I am not sure why part, but still that's no reason to be getting all helpless and crap. But enough about me, moving on to "pumpkin" (her new official name is "pumpkin" and she will only answer to it, or so we've been told).

We are on plan b and she's on 2 antibiotics now. We didn't see any improvement by Friday so that's that. The good news though, she's not much worse; right now she's more pale and drawn then she is coughing. She's been pretty low-key for the last few days, which is to be expected I suppose. She's been having short, 5-10 minutes, bursts of energy every few hours and is up and wanting to play a board game or color.



She did have OT this morning (OT comes to the house) and they worked on massage and getting her to breathe better. I don't know if I have ever mentioned it but Alana does not breathe properly. Big surprise there I know, but combine inefficient breathing patterns and lung disease and on a regular day that leads to issues, throw in some pneumonia and you've got yourself a tricky situation. It was very relaxing for her I think, not to much movement aside from switching from back to belly, and a lot of massaging of her back and rib cage to engage the diaphragm (Alana 95% of the time does not use her diaphragm to breathe).

So overall we are home so that's the great news. I'd love to report that she's all better or at least on the mend but she's not there yet. Tomorrow is another day though and as long as she's not getting high fevers, coughing worse, or having overall anymore difficulties, then we can continue to remain at home. We are still not getting formula into her g-tube and I have only been able to get around 3-4 ounces of water into her plus her meds. It's at least 3-4 ounces more than she'd be getting if left to her own devices though.



I'll post again soon, sooner if anything changes either way. Thanks again, and again for all of your prayers, words of encouragement, and support; it truly means more than you will ever know.

Pack your bags...

Sorry there won't be any pictures with tonight's posting. To be honest I wasn't even sure I was going to post anything at all. It's funny in a morbid way though, I have not been posting much on purpose and then the reason why I haven't been posting was posted in another blog, Eithene's, a little bit ago...If you have nothing nice to say don't say anything at all. It's something my mother used to tell me all the time. And yes, I mean all the time 'cause lord knows I had a mouth on me! It seems that there is a universal feeling of helplessness going around right now.

You know I like to mix up the good vs. bad news and which one I deliver first so here goes the good news tonight, the one that makes me breathe a sigh of relief, Noelani is recovered =) She went back to school on Friday and aside from a small cough she's golden. It was a very tough 4 days with the fevers but she pulled through it and no one *knock on wood* has shown any signs of contracting H1N1.

This is going to be short and sour. We are still having many problems with Alana's g-tube not working. We are only getting in about 4 ounces of water and her meds. On top of that she started coughing really bad over the weekend and was generally not feeling well. We tried to come up with a better plan on the g-tube and keeping her hydrated but nothing seems to be working. Today she needed to go into see McDr (on McDr's day off none the less) and the hope was that it was a small viral infection, the catch term of the decade, possibly in her sinuses. While this didn't account for why she was needing her O2 turned up it was a start. From there it was decided to do a sinus, chest, and abdominal x-ray.

I don't have a lot to say at this point for a few reasons, 1 is stated above, 2 my head hurts, and 3...please see #1 again.

Alana has a sinus infection, ear infection, walking pneumonia, and here's the kicker...her GI system is STILL completely backed up.

I promise to post more in the next day or so. I know that I left some of you hanging but I just am having a hard time dealing with these issues. I feel like I am failing her. Now see, this is where I have to stop because the self-doubt and pity party will get out of control and there's no helping it.

Till next time