Friday, April 6, 2012

Q&A #237

HEY!...if you go to a different Shriners don't go to Sacramento, come to St. Louis!! 
They didn't give me that option lol. I think they picked the closest two to here that has ortho. We'll see what happens! 

I was wondering ( please forgive me but I dont have experience with DS children) if Kellsey and Kennedy will ever be capable of living on their own once they are adults or will they always require lifelong care and assistance ?
Many adults with Down syndrome live on their own, hold down jobs, get married etc. Their level of help from family varies depending on their needs. I don't know the future for either of my girls, of course, anything could happen. I DO see Kennedy living on her own someday and/or getting married (probably not to Justin Bieber though! haha) and doing whatever she sets her mind to doing. Kellsey has a lot of other medical issues that will probably prevent her from ever living totally on her own... it's hard to say for sure at this point of course, but there are lots of great group home settings where she can go and have roommates and someone looking after them to make sure they're safe. We'll see... somehow I think both of the girls will be too independent to want to live with mom and dad forever. We're kinda boring. ;) 

I was wondering who looks after Kassidy Kameron and Keeghan now your mum's not right round the corner??
I just left Kassidy in charge. She's old enough to care for the others for a few days. 
I'm SO kidding!! No one throw tomatoes at me! LOL My mom flew in to stay with them while we were in Philly and thank God she did because now that Kellsey is in the hospital, I need her here! 

I know we talked about this before, but does your mom ever wonder why whenever she's around your house a hospital trip is always involved? ROFL (I laugh in the "you have to find the humor somewhere!" kind of way!)
I know, right? LOL Last time though she came specifically FOR Kellsey's gtube surgery so that was a little different. I'm SO glad she is here though!! 

Good thing you pushed and said something's not right Renee! Trust those mommy instincts. When do you think she got batteries to swallow? What size were they? As if that's important, lol. I am so glad that so far all is okay and hoping it stays that way and at least your mom is there to help. When is she supposed to head home? Will she be extending her stay until Kellsey is out of the woods? 
I'm not really sure... symptoms started Friday but the doc said it could have been a few days before then... we were in so many crazy places.... airports, restaurants, airplanes, waiting rooms, malls and more. Heck, she could have found them here at home before we left... who knows?? I can't find anything in my house missing those batteries, but I'll be looking more closely now! They were round button cell batteries... I'll post a picture... flat and about the size of a nickel. My mom was/is scheduled to stay until April 14th. Kameron's school play is on the 13th so she wanted to stay for that. I'm so glad!

So I was wondering how did they remove the batteries? Did they have to cut her open at all? Was it all with scopes? Just for curiosity sake. Still can't believe it. Do you think she had them in there before your appointment last week for their neck? Don't they do x-rays for that? Would it not have shown up on those xrays or are you thinking it was swallowed sometime after that? 
They did not have to cut her open, thank goodness! They had scopes and cameras and one of the scopes had a little pincher thing on the end that just goes down and grabs it... I didn't get to see it, but they were describing it to me. They think they were definitely in there for a couple days before her symptoms started on Friday and her Shriner's appt was Thursday, so yes, they would have been there (of course that's just a guess based on the corrosion of the batteries). She did have x-rays done at Shriner's but they were just of her head and the top of her neck, the picture stopped right below her chin, so it wouldn't have caught it... can you imagine if it had?! I'm not quite sure what would have happened... they probably would have sent her to CHOP. I've been running through all these "what ifs" in my mind the last few days. I even had a dream last night that she swallowed her mouth guard. I think I'm super ultra paranoid now. :o\

So glad your mom is there to help you out (did I miss something else?) WHen did she get there? or have you talked her into moving closer?
My mom came in a week or so ago to stay with Kassidy, Kameron and Keeghan while I took Kennedy and Kellsey for their annual appointment at Shriner's in Philadelphia. SO glad she was here!! 

When you talk to the GI doc, ask him if this narrowing in her esophagus from the batteries is similar to achalasia, and how surgery would prevent further narrowing. 
I will ask, but from what I understand, they think the narrowing is from scar tissue building up from the abrasion. They said this will be something we have to watch indefinitely. 

1 comment :

Julie said...

I'm in Sacramento and I would LOVE to meet you and the girls if that's where Shriners sends you!