Friday, November 20, 2009

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?!?

3 comments:

chrystal said...

Grr you go Momma Bear!!!! Doggone tube! Any idea why it isn't working? I may have missed the info and if so sorry. All my love again
Debs

Babette & Robert Gierke said...

Hey, let me know when you go to cincy, we will def meet you there. Love your pics Jes.

Heidi said...

So good to see your updates and pictures! Too funny about Alana wanting to be an "xray" clever girl :) Sorry to hear she isnt well right now, poor baby. The boys just got over the H1N1 flu here, whew.

OH, AND This "woman" should know better than to mess with you! Im glad youre working things out.
I hope the Cincy trip helps you with a new plan for Alana. I love the Team approach.

I still cant believe Alana hasnt gained any weight on the tube. Im sorry, its really been a tough transistion, hasnt it. Everyone has a different experience. Jack gained 1 pound in 10 days, but he still struggles with his weight today. He's 6 yrs old, 41 lbs. and 46 in. so barely on the chart for weight and now 50th% for height! Ill take any increase on the chart though.

Im still waiting to hear about the Mito testing info, youre making me crazy girl! HUGE hugs and prayers for Alana and you all, I hope she's well enough to enjoy Thanksgiving day next week. Hugs to your girls tonight--
Heidi and Jack.