Brigitte's PTR...Wish Trip. MAW/AKL April 24th-May 5th

[pnutallergymom]

Thanks you guys. I guess I am concerned mostly because we have flown SW before....Not a huge fan.. but it works for us. MHT is literally 5min from my house. Pretty much a no brainer.

I did run into an issue when we flew with them last year....hoping it was just a fluke thing and that the gate agents/flight attendants were just having bad days. The whole process is much like a cattle call....literally.

I am just expecting this to be that much worse due to it being the first day of NH school vacation week.

I heard from our MAW chapter and their advice was to just wear our shirts and buttons and "hope" for the best. Guess thats all we can do!!

Our flight is at 10:40....so when they come around for drinks, you can be sure I'll be getting my Bailey's on the Rocks!!! It will be 5 o'clock somewhere, right!!!

 

[jenb1023]

I was home sick today and have been using that time to catch up on all of the PTR's I am subscribed to but haven't had a chance to read. We stayed at AKL and loved it there! Way to be Brigitte's advocate - you are right - no one knows her better than you do. I never fly SW but my two cents would be to go up to the gate and say something like - We have a special needs child and are going on our make a wish trip and I just want to confirm that our entire family can pre-board together. Put it out there and make them tell you no - I bet they won't do it.

 

[yinyanggirls]

Our flight is at 10:40....so when they come around for drinks, you can be sure I'll be getting my Bailey's on the Rocks!!! It will be 5 o'clock somewhere, right!!!

I love Baileys. Especially with a little vodka in it. After your airport experience, you just might need that extra kick.

 

[pacrosby]

Me again!!!

So, Brigitte's MAW co-ordinator called today to let me know about our accomodations at AKL!! I almost fell on the floor !! We are staying in a 2br Villa at Kidani Village. I seriously can't even believe it!!

This makes packing etc....so much easier!! I am seriously going to get all 4 kids things in one suitcase. I LOVE that we have the washer and dryer now!!

I am simply thrilled!! Just wanted to share!!

You are packing all 4 kids in ONE suitcase????? Wow, you're a better woman than I. We took advantage of the one free piece of luggage for every passenger Not that everyone had a full suitcase but I figured the 'extra' room would come in handy for souvenirs and such (and it did!).

I'm kind of a nut though. When we go away for a week and I know I will be taking lots of pictures I don't want them in the same clothes in every picture. Dumb, I know

And regarding boarding.................I'm with others who have said just go up to the desk and explain your plight from the get-go. There's nothing wrong with asking for a legitimate favor. Most passengers are NOT flying with 4 children period, never mind with a child(ren) with special needs. While you may get an employee who goes straight by the book, you may very well get one with a heart. I'm betting on the latter

Hey, btw..............did you have any luck arranging 'anything'???

 

[pnutallergymom]

You are packing all 4 kids in ONE suitcase????? Wow, you're a better woman than I. We took advantage of the one free piece of luggage for every passenger Not that everyone had a full suitcase but I figured the 'extra' room would come in handy for souvenirs and such (and it did!).

I'm kind of a nut though. When we go away for a week and I know I will be taking lots of pictures I don't want them in the same clothes in every picture. Dumb, I know

And regarding boarding.................I'm with others who have said just go up to the desk and explain your plight from the get-go. There's nothing wrong with asking for a legitimate favor. Most passengers are NOT flying with 4 children period, never mind with a child(ren) with special needs. While you may get an employee who goes straight by the book, you may very well get one with a heart. I'm betting on the latter

Hey, btw..............did you have any luck arranging 'anything'???

Pamela....you crack me up!!! I guarantee that I will get on that plane with only 3 suitcases!!! One for DH (he is worse than a woman!!) One for Brigitte and I...and one for the other 3 kids!!

What in the heck do you pack??? I don't usually even pack shampoo or any of that stuff...just get it at Wal-Mart when we get there...rather than risk the "spillage" that could occur!! Brigitte's stuff is all getting shipped...except her pumps and meds..I don't know...I told you I was laid back!!

Now I swear to you, Bryan will have enough clothes to last him a month!! And shoes to match!! I bring enough T-shirts for all of us, a pair of jeans, a couple pairs of shorts and just do laundry at night!! I toss a load into the wash when I'm giving the kids a bath and then just put it in the dryer before I go to bed!!

I haven't gotten a thing planned. Nada. Nothing. Zip. Princesses aren't a favorite...still !! Brainwashing isn't working. Still all Mickey and Minnie....all the time! She just took all her clothes off to put on her "minnies" (pj's). I made character bfast ADR's at Ohana, Chef Mickeys and Crystal Palace. She'll probably scream bloody murder through all of it!! She likes looking from a distance, but not sure if the up close stuff is going to go over real well.

My plan for the airport is to go all decked out in our MAW stuff and just smile and insist......nicely, of course!! Like Jen said, make them tell me NO!! I don't like that word!! Maybe I'll make Bryan sit with all of them!! Yeah, right!!! I'll just hoard some of Brigge's ativan and slip all the kids a little ....then I can enjoy my Bailey's!!!

The kids all actually fly really well. The boys play their DS's....Brenna usually watches a movie..and well, Brigitte...she's just Brigitte. She talks 24/7...so she'll definitely get that Ativan....Bryan, oh Bryan!! He always makes fast friends with the Flight Attendants and there hasn't been a trip yet that he's paid for a beer!!!

 

[jenb1023]

Like Jen said, make them tell me NO!! I don't like that word!! Maybe I'll make Bryan sit with all of them!! Yeah, right!!! I'll just hoard some of Brigge's ativan and slip all the kids a little ....then I can enjoy my Bailey's!!!

The kids all actually fly really well. The boys play their DS's....Brenna usually watches a movie..and well, Brigitte...she's just Brigitte. She talks 24/7...so she'll definitely get that Ativan....Bryan, oh Bryan!! He always makes fast friends with the Flight Attendants and there hasn't been a trip yet that he's paid for a beer!!!

My DH is always amazed and how I can get people to do things/agree to things - I am always very polite but very firm and it usually works like a charm. Good luck! I do not like to fly either so maybe I need a little of Brigge's ativan and a little of your Bailey's!

 

[pacrosby]

Pamela....you crack me up!!! I guarantee that I will get on that plane with only 3 suitcases!!! One for DH (he is worse than a woman!!) One for Brigitte and I...and one for the other 3 kids!!

What in the heck do you pack??? I don't usually even pack shampoo or any of that stuff...just get it at Wal-Mart when we get there...rather than risk the "spillage" that could occur!! Brigitte's stuff is all getting shipped...except her pumps and meds..I don't know...I told you I was laid back!!

Now I swear to you, Bryan will have enough clothes to last him a month!! And shoes to match!! I bring enough T-shirts for all of us, a pair of jeans, a couple pairs of shorts and just do laundry at night!! I toss a load into the wash when I'm giving the kids a bath and then just put it in the dryer before I go to bed!!

I haven't gotten a thing planned. Nada. Nothing. Zip. Princesses aren't a favorite...still !! Brainwashing isn't working. Still all Mickey and Minnie....all the time! She just took all her clothes off to put on her "minnies" (pj's). I made character bfast ADR's at Ohana, Chef Mickeys and Crystal Palace. She'll probably scream bloody murder through all of it!! She likes looking from a distance, but not sure if the up close stuff is going to go over real well.

My plan for the airport is to go all decked out in our MAW stuff and just smile and insist......nicely, of course!! Like Jen said, make them tell me NO!! I don't like that word!! Maybe I'll make Bryan sit with all of them!! Yeah, right!!! I'll just hoard some of Brigge's ativan and slip all the kids a little ....then I can enjoy my Bailey's!!!

The kids all actually fly really well. The boys play their DS's....Brenna usually watches a movie..and well, Brigitte...she's just Brigitte. She talks 24/7...so she'll definitely get that Ativan....Bryan, oh Bryan!! He always makes fast friends with the Flight Attendants and there hasn't been a trip yet that he's paid for a beer!!!

gee, now you have me wondering what the heck I DID pack 'cuz I didn't think I went overboard on the clothes Hmmmmmmmmm I would try and justify it by saying we stayed an extra two days but you're staying an extra week aren't you????? Ok, so that excuse is out

I personally don't like to do alot of laundry over the course of a vacation. I do like to have a washer and dryer but only so that I can wash the day or so before we return (to reduce the mountain of laundry I will face at home). Plus we rarely spend any time in our room. We wake up, get dressed and go and generally only return to grab something quick (food, change of clothes etc.) until the day is done and it's time for bed.

I will say that when we packed to come home we had two completely empty suitcases that were then stuffed with, well, stuff. Just wait until you see a picture I have of ALL the stuffed animals we acquired (and few were actually purchased by us). They took up a whole suitcase in and of themselves!!!!!

 

[pnutallergymom]

gee, now you have me wondering what the heck I DID pack 'cuz I didn't think I went overboard on the clothes Hmmmmmmmmm I would try and justify it by saying we stayed an extra two days but you're staying an extra week aren't you????? Ok, so that excuse is out

I personally don't like to do alot of laundry over the course of a vacation. I do like to have a washer and dryer but only so that I can wash the day or so before we return (to reduce the mountain of laundry I will face at home). Plus we rarely spend any time in our room. We wake up, get dressed and go and generally only return to grab something quick (food, change of clothes etc.) until the day is done and it's time for bed.

I will say that when we packed to come home we had two completely empty suitcases that were then stuffed with, well, stuff. Just wait until you see a picture I have of ALL the stuffed animals we acquired (and few were actually purchased by us). They took up a whole suitcase in and of themselves!!!!!

This is where the Mommy Dearest in me comes out....damn, wire hangers!! I HATE, DESPISE, you name it, Stuffed Animals!!! They drive me crazy. That whole webkinz craze was enough to have me standing on the ledge. I am already starting to twitch thinking about it. We were at CHB today and another little girl about Brigge's age was in the waiting room as well. Guess what she had?? A good sized stuffed Minnie Mouse!! Guess who was screaming at the top of her lungs that she wanted one!!! Mine, Mine, its all Mine!!! So now you just know we're going to end up with one of those!!!

Now before you all go calling me the wicked witch of the East....my hatred of stuffed animals started after all the inpatient stays. My house is inundated with the little...and not so little..critters!! Big ones, small ones, purple ones, pink ones, dogs, cats, monkeys, horses, unicorns...well, you get the picture. What else do you send an toddler in the hospital? Flowers...nope! Candy....nope! Edible arrangements (my personal favorite)...nope! Just more and more stuffed animals!!! What in the heck do you do with these things??

I should stop!!

On to more important matters!! I totally agree about not having the laundry to do when you get home....isn't that just a total buzzkill!! Nothing worse!

We would travel well together Pamela!! We aren't in the room much either. I usually throw a load of laundry in when I am getting the kids ready for bed...then just toss it in the dryer before we go to bed. I can have all 5 of us ready in no time in the AM...always waiting for DH!! I just fold it real quick and toss it back in the suitcase. Or I will do it if Brigitte is napping.... nothing like enjoying a cocktail on the balcony while folding a quick load of laundry!!

So, you guys have to tell me more about the rope drops. We ALWAYS do the MK one...I cry every time. Like a baby. My husband thinks there is something wrong with me. Brenna even asked me if I needed an ambulance one time. No, not that bad!! But the tears do roll........ How are the other ones?? Must do's or not? Give me the good, bad and the ugly??

BTW....my itinerary planning is all over the place. I read and read and search and search....I am ALL over the place right now. I need to do some serious organization...soon!!!

 

[pacrosby]

Shannon!!!!!!!

You don't like 'stuffies'??????

Oh no no no no no no no

I simply cannot be your friend now




Now go sit in the corner with Melissa (yinyangirls)

 

[cantwaittoseemickey]

When we have flown SW and once they let the 4of us pre-board with Ty and once they only let me. What I did was take anything on with me that was extra like my backpack and Sierra and Ty's backpack and dh's cpap machine and Ty's pump. Anything that I could use to sit in seats to save them for dh and SierraIt worked out well. If someone came up I told them it was seats for my husband and dd.

 

[pnutallergymom]

So apparently when I was going on my rant about stuffies this morning, Brigitte was tanking and I didn't even realize it!! She has a BAD habit of getting really bad, really fast!!

We were just at CHB yesterday for GI clinic and she was ok. Irritable (first clue)...but fine. She didn't sleep great last night, but sleep is an issue for us. She was up early this morning and didn't move off the couch...just layed there (second clue). Hence, my being able to right a long winded diatribe on my HATRED for Pamela's coveted stuffies!! I went to rub Brigge's back, and man was she HOT !!!! Not good...axillary temp was reading 103.4??? It had to be wrong. Checked it again...103.5?? Seriously?? Ok, Brenna, get over here and let me check your temp. 97.7! Thermometer wasn't lying!!

So the calls were all made. Brigitte's GI attending called me right back. He has his concerns and they are all legit. She acted pretty good with her last line infection, and we were minutes away from an admit to the PICU. She is a tough cookie. Just makes for knowing when she is sick and really sick..pretty dang difficult.

They really want her admitted for the 48hr rule out. I get it...but its Saturday. You guys know how that goes...we'd sit in the ED for HOURS ....all to run antibiotics until the cultures come back. She'd be on precautions. Mommy would be CRAZY....Brigitte would be worse!!!

So, with my promise that if ANYTHING at all looks different, we head in. But for now, I am waiting on our infusion company to arrive and we will run Vanco q8 and Ceftriaxone qd.....until Monday. The cultures will be back and if they are positive, we'll head in then. We did run up to the pedi this am just to make sure nothing crazy obvious was going on. Ears, throat, chest, and urine..all good. So with the sudden spike in fever, my guess is the line.


So if you don't mind keeping Brigitte in your thoughts and prayers, I would appreciate it. We had such a fun week planned. We were going to see Tooth Fairy on Tuesday..then we're going to try to head to the north country on Wednesday night to use some ski passes donated to us from our MAW chapter. Brigitte was going to take part in an adaptive ski lesson and the big kids were going to learn how to ride, Shaun White style!! zThen on the 28th, we got picked in a lottery to attend a Bruins Charity Event at the TD Banknorth Garden with Starlight Foundation. The kids will be able to skate with the Bruins, have lunch at Legends, airbrush tatoos, facepainting, etc...they want to go so badly!!

Thanks you guys!!

Isn't that always the way!!

 

[Thumper321]

Aww, darn! Sounds like you've got too big of a week for a line infection. But yes, that's usually the way it happens. I hope Brigitte gets to feeling better and that you're able to avoid inpatient status. Maybe she wants new stuffies. Buy her one quick if it'll keep her home!

 

[Momofwishkid]

Oh Shannon I am so sorry this stuff always happens when you have big plans. I will be keeping Bridgette in my thoughts and hoping for no inpatient.

 

[yinyanggirls]

nothing like enjoying a cocktail on the balcony while folding a quick load of laundry!!

Now go sit in the corner with Melissa (yinyangirls)

If laundry is a good reason for Shannon to enjoy a cocktail and THIS is how she enjoys it she can sit in my corner anytime! We don't need no stinking stuffies!

 

[pipersmom]

Praying for you guys and Brigitte that everything will resolve itself withOUT an admission! Just think if Piper hadn't been admitted I'd be all packed and everything by now... : Seriously though, hoping you'll be able to do at least some of the fun you have planned this week!

Confession..I too am not all that crazy about the idea of bringing lots of stuffed animals home..we have waaaaaay too many for my taste now! So, I'll be joining you girls in the corner with a drink...and how about a barrel fire made with old stuffed animals?

 

[DisMomAmy]

Oh no... I hope Brigitte has a speedy recovery without a hospital admission!

 

[noahsketomom]

Hey Shannon,
Praying for Brigitte....and YOU!!!



Hugs from your southern neighbors,

 

[yinyanggirls]

I'll be joining you girls in the corner with a drink...and how about a barrel fire made with old stuffed animals?

Our corner is getting crowded. Just kidding!!! I always wanted an excuse to use that smiley though. How about this one instead?

 

[pacrosby]

Amanda and Melissa!!!!!!!

I am appalled!

(but there are a few I'd like to add to your bonfire if you don't mind )





And Shannon......................I am so sorry to hear of the sudden turn of events. YIKES....that's some scary stuff. Get that girl healthy and back on home so she can enjoy all that fun you've got planned!

And I do so hope you didn't mind/weren't offended by the banter.....just trying to keep it light. You know all of us here (that would be Melissa, Amanda, myself and all 565 stuffies that live in my house ) are thinking only good thoughts for you and Brigette

 

[Wee Annie]

Shannon,

thought I had subscribed to your thread, but apparently hadn't! So sorry to hear that Brigitte is not well. I will be praying for it not to be a line infection, and that she recovers quickly on the abx, so you all can have some fun this coming week!

Btw, count me in in the not liking stuffies crowd. I have three girls, so already had too many before Elke was diagnosed, but yikes, after she was, we're now overloaded! My middle daughter once went to a birthday party with an ingenius design by the mother. She set up "carnival"-type games in her home and yard, and then had a pool of "gently-used" stuffed animals as prizes. Every child came home with an armful and were overjoyed, and she got rid of tons of stuffed animals. And I, of course, said, "oh great. Now we have someone else's unwanted stuffed animals...".

Prayers for Brigitte and your family

Ann