No News-Good News? I hope...

[Dexky]

Hey all you mothers and we few scattered fathers!!! How are all our young-uns doing? EJ is still going along ok. Still no schedule to start Humira but there seems to be no pain so we're in no hurry!!!

Our little corner of the forum has grown cold, but if all the kids are feeling good then!!

Just wondering??

 

[AntsMommy]

Hi Mark!! *waving* I am here! I think that in this forum, NO news IS good news! (I hope!) I know as Anthony is feeling better, we are busier with other stuff (including working to get caught up with the 5 weeks of school missed!) but the fact that I am not bugging people with questions is always a good sign!

Today I got a phone call from the school nurse asking me if I would be willing to talk to a mom whose daughter was just diagnosed 2 days ago. The nurse shared that there was another 'crohnie' in the school and the mom is really desperate to talk to someone, SO we are going to chat this weekend! In a twisted way, I am not happy to "meet" anyone who has to go through this, but it is nice to have a support system.

So, it appears as if my daughter (8 years old) has caught a stomach bug, I am busy sanitizing EVERYTHING in sight and keeping her in seclusion, lol. I really hope that it doesn't spread through the family!

Mark, glad to hear EJ is pain free and all is going well! So, are they waiting until he has another flare to schedule the Humira? Maybe it will never happen! Wouldn't that be nice?

 

[Dexky]

Hey Kelly, glad Ant is doing ok! Gee, I hope they're not waiting for a flare! I wonder if the insurance is pushing back. As long as he feels well, I'm not going to push it.

Good of you to help with the mom at school! Maybe you could steer her our way...unless she's nuts or something!!

I hope Ant, and the rest of you, can avoid the bug!! Good luck!

 

[cowgirlnz]

Hi Mark. As you know, but others probably don't, we're from Christchurch, New Zealand, and have just had a devastating earthquake. Which has kind of put Crohn's into perspective in the short term. Our son may be pooping constantly, but at least he's alive!
Actually we live a little out of town, and our property is fine, but we have many friends and family affected, and our infrastructure and services will take a long time to recover.

One thing this has brought to mind, is the need to be especially prepared when you have a child with medical needs. For at least a week our supermarkets (those that were still standing) were very low on stocks, as were pharmacies. Our hospital was inaccessible to all but the very needy, and it was near impossible to get there anyway, as petrol supplies dried up.

In future I will be ensuring that we have at least two weeks worth of medication and dietary essentials at home, as well as a spare can of petrol!

Otherwise we're fine. Ranger's having a bit of a flare, possibly brought on by stress - but I think we'll try and treat it at home - I'm not ready to venture into the central disaster zone just yet.

Gillian.

 

[DustyKat]

@ Kelly. Good to hear that Ant is chuggin' along just fine, YAY!!!

@ Gillian. Great to hear that all is well safety wise and I hope things settle for Ranger at home. Far too much disruption and distress already! Keeping my fingers and toes crossed. :hug:

@ Dex. Well since you never communicate with me........:kello:

Aren't you even a little curious about the Humira Dex??

Dusty.

 

[Dexky]

@Gillian, I'm sure we could all learn some valuable lessons as CC's tragedy continues to unfold. I'm glad you can still communicate! I hope you're able to keep Ranger in check!!

@Dusty, I'm so glad to see you on here!!! After 5 gazillion posts, I was afraid you left us Bwahahahahahaha!!! Am I curious? About the med or the hold-up? I would like the GI to at least acknowledge our queries but EJ is so well that I don't want to sniff a gift fish!!

 

[DustyKat]

Not the med but what the go is with it.

sniff a gift fish!!

I'm not going near that one!

 

[Dexky]

Get your mind out of the gutter!! Yeah, I'm curious as to the hold-up but honestly we're in no hurry to change the status quo.

Oh, the quote is from a comedic author named Pat McManus(I think). He wrote/writes humorous shorts about his outdoor adventures. One was titled "Never Sniff a Gift Fish". Just a play on the old "gift horse" saying!

 

[DustyKat]

Oh okay, I thought it might have had something to do with being gifted a prostitute for your birthday, you know, that sort of thing. :biggrin:

Yeah, I get not wanting to jinx yourselves but I reckon it would get the better of me.

Dusty.

 

[Dexky]

Damn, caught me!! It's that Scorpionic insight again!!

I really haven't thought about it "too" much but....thanks a lot Dusty!!! I'm gonna worry all day about it now!!

 

[DustyKat]

Hey don't put the guilt thing on me! :rof:

 

[AZMOM]

You two make me laugh like a hyena. T'ain't pretty either!!!!

Dex - myhealthatvanderbilt.com Have you set up an account for EJ? I have quickly learned that the best way to get anything out of Acra is messaging through Claire's portal. Maybe since the messages become part of the medical record, they stay on it!!!!????

On another note, I finally got around to getting a Neurology appointment squared away for Claire. We were only seeing Neuro once a year in Arizona so I wasn't too worried about it. First available appointment? AUGUST 24th! Before I realized it, I said to the scheduler, "I guess it's a good thing she isn't dying." I am happy to report we both had a good laugh over that one.

Oh and while I'm all keyboard happy I can tell you this. Claire hasn't complained about her foot pain (residual from the ATM) in months and months. So her slap-happy Momma decided to try and d/c the Neurontin. Claire and I talked about it. She was happy for one less pill. I thought it was a grand idea. Fast forward 3 days, picture a screaming seven year old about "tacks or glass or a spider" in her boot, hopping around the driveway pulling it off. Nope, no tacks. No glass. No sharp fanged spiders. Stabbing foot pain was back with a vengeance. I felt AWFUL for trying to stop the medication. We have restarted it. I apologized to her last night and told her it was a terrible idea, all my fault and how sorry I was. She said, "Well, I'll take the foot one and let's stop the 6MP." Oh no darlin', we won't be stopping the 6MP. I might be stupid, but I'm not crazy!!!!!!

How's that for an early mornin' southern-fried rambling rant? Dex - don't ask what's up ever again! :ywow: You might get what you asked for!

J.

 

[AZMOM]

@Kelly - I'm so glad the new normal is at work. You will be a rock for that new Crohnie Momma. I mean it! I had lunch with two other Mom's who have kids with arthritis. We all go to the same doc in Nashville. And like I told them, the only ones that REALLY understand are parents in the same circumstances. I have wonderful loving dear friends and family but really, they don't completely get it. They can't. You all can and that makes this a special place. :ybiggrin: And you'll be able to be that for the new Momma.

@Gillian - GOSH I am so glad you all are okay. We'll be thinking of you........ Stay safe.

Hugs to you both (couldn't just be giving them to Dusty & Dex ha ha)

J.

 

[Dallies]

Hello :ysmile: Well no news really is good news. Meg had her op over six months ago and so far so brilliant. She is doing well with her A levels and in a few months time we will be thinking about universities. In June she may learn how to drive!:ywow: Love to everyone and just because I'm not here very often doesn't mean I don't think of you all

 

[Astra]

Hiya!
I'm just sneaking in to say Yahoo to all the kids and their fab parents!
lotsa luv
Joan xxxx

 

[MomofIBD's]

Marky Mark & the funky bunch!!!! Lol!!!! I have been reading but didn't know what to say as Daniel is so much better. I guess I was afraid of jinxing things!!! His system is not fighting bugs well, as he has a bad cold now. But the strep throat & tummy bug are gone & for the first time in months he is solid & is having thrown withdraws!!!! He is eating but watching what he eats so as not to set things off again. Just hoping not to see the other shoe drop for a long long .... Well like never!!!!! As parents we hate seeing our kids hurt beyond the normal growing up stuff!
((((Julie)))) You were only trying....We all I think at one time or another have done something we thought would help or was for the best only to have it backfire. It is so nice to have someone that understands!!! My Daughter-in-Laws sister just thinks she is a lazy bum & doesn't want to work. She just graduated from nursing school with almost a 4.0 average. But is having a lot of trouble with her UC. The Remicade is only working for maybe 2 weeks then it's pure @&$! for a month or so till the next drip. We can only understand!
(((((Gillian))))) it's a shame we have to learn a valuable lesson through your hardship & devastation. So thankful that you are ok!
Kelly sometimes it's hard to relive all those feelings that you went through at the very beginning of Ants DX. On here we are faceless when we choose to be & only talk when we want to. It's hard to fill those shoes when we ourselves are so new to this & are still dealing with so much! Hugs to you also!!!
As for Dusty & Dex ...... It's like taking a walk on the wild side when you two get together on a post!!!!!! LOVE IT!!! Trough all this craziness we need a good dose of the funnies to get us a little less crazy!!!!

 

[DustyKat]

@ Julie

How's that for an early mornin' southern-fried rambling rant? Dex - don't ask what's up ever again! You might get what you asked for!

As he should!

And the moral of the story is................if you don't try you'll never know! Sounds like something I would do Julie so you're not alone there! Good to hear there was a happy outcome.

@ D. So fab to hear that Meg is going great guns, woohoo! Ahahaha I have not long completed the learning to drive with my two, I don't envy you mate! . Nah just kidding, it is wonderful to see them take that next step. :hug:

@ Astra. :bigwave: Thanks for popping by hun.

@ Mom. Woohoo for Daniel! I hope it stays that way for a very, very, very long time to come! :hug:

As for my two:

Roo is doing fabulously well. Fast approaching 5 years in remission. Uni has just started up again and she has hit the ground running. Has started her job as the SRC welfare officer and it has now been made official (media release) that she is running as the Labor candidate for Northern Tablelands. She rang last night and said she had been doing radio and newspaper interviews for most of the day. I am a little concerned about full time study, job and campaigning but she seems to be thriving on it so that's gotta be a good sign right?

This is her official campaign photo: Haha Vote 1 Roo!

Matt: Well if you have been following my novel in another forum you'll know all about it. :lol: Long story short, we head to Sydney on Sunday for follow up Monday with the colorectal surgeon and gastroenterologist. I'm working off the assumption that the surgeon will set a date for surgery around the end of the month, hmmm maybe 90% sure of this outcome, BUT I'm not entirely ruling out that he will keep us down there and operate this week. (((shrug))). Hell nothing has gone according to plan since he was diagnosed so why should it be any different now! :ylol:

He had another good trip to the GP's yesterday. WCC normal, CRP still up but reducing again and the doc said the mass was smaller and less solid, woohoo!

Either way come Monday I will know where we stand. :shifty-t:

Dusty.

 

[Dexky]

@Julie, we do have an acct. through my wife's e-mail. I ask everyday if she's heard anything but like me she is content to let well enough alone for now. The delay may bite us in the arse but it sure is nice to watch EJ feel so well and be able to keep up with his buddies. I'm tickled to hear your rant so thank you very much!!

@Mom, Daniel is feeling so much better is the best news of all!! I'd much rather read that than the alternative!!

@Dallies, great news! My oldest will get her learner's permit in May so I'll be going down that road at the same time!! What age can they begin to drive in England? It's 16 here though now it's a full year before they get an unrestricted license. It was 30 days back in my day.

@Joan, thanks for dropping in on us! Hope you're still going good!!

Last but least!! Did I say that? Woot, woot I'd vote for her...even though I completely oppose her politics. All she'd have to do is bat those pretty eyes and smile and I'd melt like butter on a summer's day!! I still think W. must be one handsome man!!

 

[Dallies]

@ Dex In England you may drive a car at 17.

@ Dusty, love Roo's picture. She looks gorgeous! Good luck Roo xxxxxxxxxxxxxxx

 

[JenEdwards]

Guess I'll join in on this one. K is doing pretty good with her new meds. She seems to have caught a touch of the stomach bug that her little sister had so she is home from school today. I think her stepdad is teaching her how to shoot squirrels with the bb gun since she's home lol. For the most part her headaches from the meds have stopped. She has been in such a good mood lately we have wondered what's been up with her......I think it's just that her body is finally feeling good and her emotional state is showing it.

I'm not as good about sending little individual messages but it's good to know that pretty much everyone one elses kiddos are doing good. I hope it stays that way. :ghug:

 

[AntsMommy]

Dusty, Roo is a beauty!!!!!!!!!!!! It is wonderful and inspiring to hear her doing all these things along with college and gives me lots of hope for Anthony! Will check for Matt's full story.

Jen, my daughter (8, no crohns) had the stomach bug last week and I was like a crazy person keeping her in her room and sanitizing everything in sight to make sure Ant didn't get it! Hope she is feeling well now!