Pegs

[Kristen (ColeysMom)]

How are you guys doing?

I know you've been around, but you haven't posted much about things since Allie was having issues at school and the worry about her getting streppy again and then of course the big friggin funding let down...

I'm detecting a bit of 'something' here and there and I'm starting to worry that things haven't improved much. Is everything going ok?

Any progress on funding? I could sure use a distraction, is there something I can do to help research or anything?

KJ

[peglem]

Oh, just been kinda busy with Allie not in school. Getting no laundry done...but, hey Monday's just around the corner. Have switched Allie"s prophilactic antibiotic to zithro...now adjusted to a 5 days on/ 7days off thing. I think that's better. Allie's having good/bad days. I'm watching the yeast, as I think that's her biggest issue right now. We've had a pretty good holiday. Fun Christmas. Can't complain, really. We've all had colds, but are on the mend. Monday we took Allie for blood draw. God bless her-she works so hard at cooperating for those, but really scarey for her. I'm very concerned about her weight actually- though dr. says her muscle mass is fine. In the last 2 years she's weighed between 75-80 lbs. She's getting taller, but not heavier. Her old pants got way too short on her, but the next bigger size hangs from her waist- and they're elastic waist pants!!! She's skin and bones. Anyway, as long as we were getting blood drawn anyway, I asked for vitamin testing. Her doc said he can only test for fat soluble. So, we'll get her A,D,& K done anyway. She seems pretty healthy, but doesn't look it. I'm toying with the idea of putting her back on bethanecol...but that means another trip to the psychiatrist to discuss a medication that they likely have no experience with and little knowledge of. We'll see...

[Kristen (ColeysMom)]

OMG! Coley started back yesterday, I was ready to crack...well I guess with everything else going on he was bored plus WAY left out, so I guess it's understandable that he was at his worst. Plus having the stupid bugs and all...UGH! God bless you, 3 more days!

Glad you guys had a nice holiday, got any pics?

I SOOOOOO know where you are coming from on the weight thing! I'm PO'd right now cuz all the great ground Coley made was blown out of the water with viruses, GRRR!

One thing that I try to hold onto when Coley gets real thin, is the fact that he's still growing...I hope you can find some comfort in that...We've had LONG periods where that wasn't the case, and that can get REALLY scary...it could just be a nice growth spurt and she'll add the pounds on soon...Coley seems to do that, grow and not gain, get REALLY skinny, then add some weight. Course he never really looks the right weight, but it's better than being skin & bones, ya know. And it is a pain, all I can say is thank god for the adjustable pants at Target!!!!!

I've started adding more fat back into to Coley's diet...hopefully the enzymes will help with that...

Are you still doing the s.bulardii for the yeast?

What is the bethanecol for (is that the one you were telling me about before with the wide pupils?)...I was thinking of that the other day when Coley was REALLY sick...he looked horrible...funny thing is though, while I was shocked at his appearance, I realized that he used to look like that ALL the time, and just doesn't anymore...like flat color to the face, dark circles around the eyes, tired, plus HUGE pupils...it went away when he got better, but I find myself checking for it still and wondering, is it the light or his eyes???

Well, glad things have been good! Crossing everything it stays that way!!!!! And really, I know I can't do much, but would love to help if I can in any way, k? I pray for RDI for Allie every night! Even asked Santa for it, guess I was naughty this year or something...:rolleyes:

[peglem]

Still doing boulardii...I'm only doing diflucan on the 1st day of the zithro cycle. Its a 1 per week script- but I'm working off the biofilm theory right now- so if the zith is opening up the biofilm- then I figure I'll quash the yeast at that time- add the boulardii and probio back in. How will I know if the biofilm or strep isn't a problem anymore? I guess every so often we'll have to go off and see what happens. (summers)

The bethanecol is a cholinergic- Just a little info: Acetylcholine is the neuro transmitter for the parasympathetic nervous system (which is the one that balances the sympathetic, or arousal side), the nerve-to-muscle neurotransmitter and the one that balances w/ dopamine & serotonin in the basil ganglia. Its involved in other stuff, too- but those are the major targets for Allie. Yes, its the pupil dilation one- dilated pupils are a function of the sympathetic nervous system (neuotransmitter= noradrenalin) so the pupils were just my major clue when I started looking into this stuff years ago.

no news on RDI...waiting for something to clobber me over the head!

[Kristen (ColeysMom)]

Well, I'll clobber you over the head with the funding if my lawyer tells me we can actually sue those A-holes for not following criterea (I kinda doubt it though)...BUT, I swear to god if Audrey's current sickness ends up being radiation poisoning, I WILL own that hospital, and then I'll still fund Allies' RDI...heck I'll buy you an RDI consultant for her birthday! :D

[peglem]

OMG, Kristen, it better not be radiation poisoning! There isn't enough $$$ in the world to make up for that! Poor little Audrey. How's the rash doing? How's she doing? Is there even a test for radiation?

I never really did get into the Christmas spirit this year. I dunno why, maybe it was my kid pulling the lightbulbs from the string on the tree- because, I think, we wouldn't let her bite them. I did all the neccessary stuff to celebrate. Maybe because my kids are all getting older. My 22 y.o. son bought a big flatscreen tv for the family as a gift. My oldest daughter (17) totalled her car 5 days before xmas. My 16 yo daughter has anxiety issues (OCD?) that I'm going to have to get her help with. Usually I'm able to find something each year for each family member that I know they'll really love and that makes me excited because they're going to be so happy! This year, couldn't get into the shopping thing at all. I hated going to the stores and everything, EVERYTHING just looked like a bunch of junk that nobody wants or needs. Still, I felt like Christmas was good...it was a nice day.

[milivica]

no news on RDI...waiting for something to clobber me over the head!

Well here I am, pow!!!

Two crazy questions, don't have liquid in your mouth for the first question, I fear it will shoot through your nose.

1) Can your oldest daughter and son get a job or use money from the job she/he already has, to help get RDI going or rather, to keep it going once it starts? I know my daughter would do that for Vince, but she is 10. When she's older, uhhh, not so sure how that suggestion would go over.

2) When I worked weekends at Menards, I made at best $300 per weekend for taking really freaking long shifts. It's how dh and I managed for years, so we never needed a sitter. Back when Vince was a tot and Carmen a baby, they started people on the sales floor at $12.50/hr with no experience. There are probably way better ways for you to earn more money more quickly.

Once you start RDI and get a good grip on what it is, and what to DO, you can work directly under your consultant or any consultant as an Extender, you would go into the homes of families starting RDI and show them what to do, help them get started. I think you have some idea of how the theory that makes sense and is easy to understand, can be very hard to DO. You would show them ways to DO the current objectives for their child. Sounds like you have some deep pockets in your area, the families would pay you directly. Since you are not a consultant, the consultant would give you the child's current objectives so you'd know what to work on. I never knew what I wanted to 'be' when I 'grew up'. Guess that's cause a job hadn't been invented that I could put my heart into yet, now there is! Of course being a good mom is my #1 goal, but they'll be grown and have lives of their own someday, etc etc... I'll be doing that when I start work again.

[peglem]

My oldest son actually has a pretty decent job, but I don't see how I could hit him up for the cash...he's my kid! And well, I won't go into what he's been through the last couple of years...anyway, he already pays one of our monthly utility bills kinda in lieu of rent. My 17 yo is still in highschool and has a parttime job at a movie theater. But, she's working towards setting up a life. I know how hard it is for kids starting out in the world...she'll need her cash. She has been going out with this very nice boy (technically he is a man now, but y'know) for several years now. She'll be heading off to college next fall (is the plan). If I could get my hub a little more committed to RDI it would help...He was not happy about my leaving teaching because he was worried about losing the income. Maybe I'll just hit the lottery (fat chance-I never buy tickets). I will find a way...its just taking more time than I reckoned.

[milivica]

And when you do find a way, you are going to EXCEL.

Wait and see. I can tell. I nearly fell over the first time I saw you explaining RDI here. You absolutely get it. Applying it, doing it, that takes someone to guide you and lots of practice. And in that, I know you will absolutely EXCEL. And you like me, are going to freak when you see how easily Allie gobbles up RDI. With Vince, my so called violent danger to others and himself wild child, it was crazy how he just absorbed RDI like a sponge. Truly, it's like he's been waiting for it all along (those developmental milestones). He was hungry for growth, for sharing experiences and emotions and the genuiness of it all (instead of 'rote' stuff).

Mark my words, you are going to EXCEL, and because of that so will Allie. School is going to know what drug you started her on (sigh). You know that about yourself, right? How quickly you are going to excel at this, right?

[Kristen (ColeysMom)]

I was REALLY into Christmas this year, but all the other stuff put a damper on it. I tried not letting it though...

Coley totally believes and understands the whole Santa thing...although he's asking so many questions, not in disbelief, he just knows what doesn't make sense. Like how does Santa get the stuff down the chimney, particularly since we have a fireplace insert and have been using it! And why does he live so far away? Why can't we see him? Why won't he come until all the children are sleeping, and why do they HAVE to be asleep in their own beds?

My answer for most was the same: "He's got Christmas Magic"...OMG, you should have seen his face with that one...then he started with : what does it look like? why is it invisible? how come we can't see that either? where does he get it? ... Why did Goddy give Santa the magic? Will he give me some magic when I get bigger?....

I just end up asking him: Why do you ask so many questions? Which I know is not encouraging AT ALL...but crikie after 15 minutes of non-stop badgering...

AND I was so looking forward to Audrey's first Christmas...I remember how stressed and hectic Coley's first was...we couldn't even leave the house with him because it was his first RSV season...I wanted SO bad for it to be 'normal.' I guess it was pretty good, despite the stupid trip back to the ER...I felt so bad for Coley...we had to dump him off again and fly in with Audrey :( But atleast we have video of them both opening their gifts...well, Coley helped Audrey, which was real cute. Coley's telling Audrey: "You have to just RIP the paper off Audreeeey...":p

As for her rash...it's calming down a bit, but she's still barfing and still has yellow diareah. Plus she's still sleeping WAY more than she did before the ER visit. And she's not doing well with solids at all. And now she's got a screaming red raw rash on her bum. We had to go get triple paste for her...poor thing! Coley NEVER had a diaper rash (probably cuz he never pooped and when he did it was little pellets)...do you know how much that stuff costs? $10/2oz! :eek: ... but it seems to be helping, so it's worth it...but YIKES!

We've been putting rice in her bottles also to help bind her up...it might be working a little, but not much...I'm afraid to add too much and create the opposite problem, ya know? Plus I'm thinking if she's trying to detox, I don't want to derail that, just want it to be a little easier on her...

DH & I plan to take her to the ped this afternoon if she's barfing or has diareah again today...it's been 2+ weeks, she's definately lost weight and I'm not sure we can still blame it on teething...I mean she did get a stomach bug too...but 'things' were different...trust me you don't want me to go into detail on that...just trust that I could tell the difference....

I think radiation poisoning can be tested with a blood sample. We counted last night:

2 x-rays at South Shore
24 skeletal series CHOB
2 repeats on the skeletal series because Audrey moved
4 repeat arm CHOB
4 repeat arm after casted
-----------------
36 friggin x-rays! :mad:

And then 1 week later 2 more at MGH.

[Kristen (ColeysMom)]

I almost made a seperate thread, but don't think people would appreciate it...so I figured I'd update here...

Audrey had her first pee this am in like a week...and this afternoon had her first BM that resembles her typical pre-ER BMs!!!!! :D

And while I'm bragging, she's walking with assistance too...it's not a record or anything, but I've been trying to get her to take steps, she uses her walker but won't walk for me...MIL figured out that she'll only do it if we hold her under her pits...she's now walking all over the house!!! :D

I have some news on Coley too, but will make a seperate thread for that....