Nikolas & MAW-We're back from Mickey Mouse's House! Pre & Post trip reports

[2specialkids]

Well there's not much to do here except wait and get new clothes sewn for Nikolas.
Oh, Mom got an email from the airlines...they changed our return flight time. We're getting 2 more hours in Florida!! The original flight time was 6:43pm (who comes up with these times?) and it's been moved to 8:30pm. That will give us the whole afternoon to hang out in GKTW and explore anything we didn't get to see while we stayed there.
How does everyone take this wait....I'm so excited I can barely stand it!
Time for coffee and chores....have a great day everyone!

 

[2specialkids]

Ok, I need some input from other special needs & typical kiddo moms...
What am I forgetting?
I'm making my packing list and this is what I've got so far...
Formula (if they don't have Compleat at GKTW), 2 feeding tube extensions, extra button, 2 60cc syringes, cloth diapers, daily meds & prescriptions incase of accidental spills, Diastat, TLSO & AFO's, shoes, shorts, pants, shirts, pj's for all of us, camera, autograph books, something to do on the plane, carseat and the wheelchair. What am I missing...you know that "I'm forgetting something" feeling...well I've got it. I haven't packed like this before. Last time DS was an infant and not on meds or a feeding tube so I have lots of other things to bring.

 

[StefaniLyn]

Ok, I need some input from other special needs & typical kiddo moms...
What am I forgetting?
I'm making my packing list and this is what I've got so far...
Formula (if they don't have Compleat at GKTW), 2 feeding tube extensions, extra button, 2 60cc syringes, cloth diapers, daily meds & prescriptions incase of accidental spills, Diastat, TLSO & AFO's, shoes, shorts, pants, shirts, pj's for all of us, camera, autograph books, something to do on the plane, carseat and the wheelchair. What am I missing...you know that "I'm forgetting something" feeling...well I've got it. I haven't packed like this before. Last time DS was an infant and not on meds or a feeding tube so I have lots of other things to bring.

Ever since Bella had her tube removed, I always feel like I'm forgetting another child when I pack because we have one less bag due to lack of tube feeding supplies.

Do you use gauze or another dressing for the g-tube? Feeding pump w/charger and pump sets? Small syringes for medications? Does the diastat have DS's name on it? What about triamcinelone cream for the g-tube? Nystatin? Desitin? Do you carry a medical history and list of DS doctors and medications (in case of emergency)? Medical alert bracelet? Wipes? Water for flushes?

Camera batteries or charger? Memory card or film? Sharpies for the autograph books? undergarments? is the wheelchair electric and does it require a charger? cell phone (and charger)?

Good luck with the packing!

 

[luv2scrapmm]

Have a wonderful trip! Sending you pixie dust for a little extra magic. Your little man has an AWESOME smile!

 

[SueM in MN]

I need some help here...I was reading thru the different pre-trip & trip reports and I came across lots of things people do to say thanks for all the wonderful things that CM's and others to do make these Wish Trips wonderful. My problem...now I can't find them & I didn't mark any!.

Follow the link in my signature to the disABILITIES FAQs thread. Post #3 of that thread has some links that will be helpful to you in a section about MAW trips. One of the most helpful links will be to the WISH Trippers United thread on the Community Board. They will be able to answer your questions and many of the things you looked at and can't find now might be linked there. Be sure to look at post #1 of the WISH Trippers thread - that's where they have lots of helpful links.

 

[2specialkids]

Ever since Bella had her tube removed, I always feel like I'm forgetting another child when I pack because we have one less bag due to lack of tube feeding supplies.

Do you use gauze or another dressing for the g-tube? Feeding pump w/charger and pump sets? Small syringes for medications? Does the diastat have DS's name on it? What about triamcinelone cream for the g-tube? Nystatin? Desitin? Do you carry a medical history and list of DS doctors and medications (in case of emergency)? Medical alert bracelet? Wipes? Water for flushes?

Camera batteries or charger? Memory card or film? Sharpies for the autograph books? undergarments? is the wheelchair electric and does it require a charger? cell phone (and charger)?

Good luck with the packing!

See, this is why I need to start a list over a month early. I'm bound to forget something. GKTW will have a pump and bags for us and I can just bolus him if needed. He's on a canned & blended diet so he gets real food boluses for breakfast and usually dinner plus cans for the other 2 meals. I will need to print out a new medical history and doctor list. I totally spaced having some extra water for flushes though-thanks!

I'm doing a planning binder now since I found a really good thread about them (helps the OCD nut in me keep busy ) I figure I can use the info now and keep it for later trips so I only need to make minor updates and add the other financial info that we don't have to think about on this trip.

Time for coffee...

 

[Bill_Lin]

I hope you have made it to the Wish Trippers Unite! thread. I have not had time to check. The link is in my signature, as well as some other helfpul links for Trip Planning.

 

[2specialkids]

I hope you have made it to the Wish Trippers Unite! thread. I have not had time to check. The link is in my signature, as well as some other helfpul links for Trip Planning.

I did, thanks! There is so much information on here. I told my sister that if she's planning on taking my nephew she should start looking at it all now since it could take months to get thru all of it.

There's not much to report here. I'm looking at T-shirt iron-on patterns & luggage tags & journal pages & all the really cool things the designers on here have done. WOW, they are seriously talented!

I'm making a planning binder and some other things just to keep a good record/memory of our trip and to keep me busy while I wait for our turn to leave.

Mom and Dad have also made it very clear that they will be taking Nikolas for a bit of our trip so they get to have some 1:1 time and so Mikayla gets some 1:1 time with me. I think that's a very nice idea so we can make some really special memories for everyone involved.

Have a great weekend everyone!

 

[Sandy321]

Suzzanne!

Fellow Hoosier here!! Currently living in IL - but mil and sils nieces etc all are in IN (Fishers, Ft Wayne... my parents are snowbirds - from Angola!! )

Your little guy is precious indeed!! I can.. relate to you with a dd who will be 13 in Oct - If your dd is anything like mine - expect major blow ups the weeks before the trip Not sure why, but the last 2 years we went our dd behavior went downhill right before the trip - I'm not a good mom - I want to scream "I'll leave you at home" but I didnt!!

you asked about cards -

http://www.mouseforless.com/downloads.shtml#kids

this is one of my favorite websites - this is a page of downloadables! I download the journal for dd to do each night - it helped her focus on positive stuff - as well as being very very simple fill in the blank! I took it to Kinkos and had it bound...

Let me know if I can help you plan

 

[StefaniLyn]

Suzzanne!

Fellow Hoosier here!! Currently living in IL - but mil and sils nieces etc all are in IN (Fishers, Ft Wayne... my parents are snowbirds - from Angola!! )

Your little guy is precious indeed!! I can.. relate to you with a dd who will be 13 in Oct - If your dd is anything like mine - expect major blow ups the weeks before the trip Not sure why, but the last 2 years we went our dd behavior went downhill right before the trip - I'm not a good mom - I want to scream "I'll leave you at home" but I didnt!!

you asked about cards -

http://www.mouseforless.com/downloads.shtml#kids

this is one of my favorite websites - this is a page of downloadables! I download the journal for dd to do each night - it helped her focus on positive stuff - as well as being very very simple fill in the blank! I took it to Kinkos and had it bound...

Let me know if I can help you plan

Sandy, thanks for posting that link! It has so many excellent downloads, including the cards! As our trip draws closer, I'm going to download and print nearly everything on that page, . What a great resource!

 

[Mlissa88]

Nice to see another "Nikolas". Our spelling is due to my SIL. Her name is Nikki and she was in Iraq when he was born so DH wanted us to name him in honor of her. She, thankfully, came home after 2 yrs there.

I'm glad your SIL came home safely and I bet she was so touched and honored to learn that used part of her name.

I'm an planning, prep packing kind of mom too so don't feel silly about looking for help with a list early in the game. Those travel dates will sneak up on you before you know it. It will be nice that you'll be ready! And the folks on these boards are great of thinking of things we may have missed in packing.

 

[2specialkids]

Suzzanne!

Fellow Hoosier here!! Currently living in IL - but mil and sils nieces etc all are in IN (Fishers, Ft Wayne... my parents are snowbirds - from Angola!! )

Your little guy is precious indeed!! I can.. relate to you with a dd who will be 13 in Oct - If your dd is anything like mine - expect major blow ups the weeks before the trip Not sure why, but the last 2 years we went our dd behavior went downhill right before the trip - I'm not a good mom - I want to scream "I'll leave you at home" but I didnt!!

you asked about cards -

http://www.mouseforless.com/downloads.shtml#kids

this is one of my favorite websites - this is a page of downloadables! I download the journal for dd to do each night - it helped her focus on positive stuff - as well as being very very simple fill in the blank! I took it to Kinkos and had it bound...

Let me know if I can help you plan

Oh man, just what I need! They have some really cool downloads..my printer isn't going to like me at all...

I'm glad your SIL came home safely and I bet she was so touched and honored to learn that used part of her name.

I'm an planning, prep packing kind of mom too so don't feel silly about looking for help with a list early in the game. Those travel dates will sneak up on you before you know it. It will be nice that you'll be ready! And the folks on these boards are great of thinking of things we may have missed in packing.

They are sneaking up so quickly..DD has a counter on her computer and it says something like 45 or 46 days...

 

[2specialkids]

After much discussion between my DD and myself we finally made ADR's. I thought she could pick a place for herself since Boo won't mind and is tube fed but she wanted to let it be a place for him. We picked Play House Disney for lunch. He LOVES JoJo so this should be fun. The only thing is that DHS was the only park we WEREN'T supposed to be going to. I guess we're just going to squeeze it in and split the day with another park (or 2). Mom has to have a park hopper pass anyway so we'll try do AK & Epcot on that day before and after lunch. We won't really do much in DHS...not much he's interested in.
Ahhh...finally, bedtime for the kiddies...and momma...it's been a loooong day.

Oh and here's a few new pics so you can meet the wonderful "big sis" Nikolas has and see his new favorite thing to do...

She's with my MIL in this pic taken a few days ago.

Wheeeeeee!!! He LOVES to swing now!

 

[2specialkids]

This has nothing to do with our trip.

It's been an awful day so far. DD got hurt yesterday in gym class-bruised a few ribs & had to have X-rays this am. Then this morning as I was taking Boo out to put him on the bus for school-he fell out of his wheelchair! I just didn't get his belts on right (he's got a new seat/restraints for his wheelchair). I feel absolutely horrible. I took him straight to the ER and they checked him out. Everything is fine and the scrapes are superficial. He didn't need any stitches or anything but his mouth was bleeding like crazy. He may lose one of his front teeth but he's 5 and they are due to fall out in the next 2 yrs or so.

I know it's just an accident but it was a huge mistake on my part. I always double check everything before I take him out but didn't this time. He got hurt. I feel just horrible. I gave him some ibuprofen for the discomfort and he's acting fine. I just can't believe I didn't check him again before taking him out.

 

[StefaniLyn]

This has nothing to do with our trip.

It's been an awful day so far. DD got hurt yesterday in gym class-bruised a few ribs & had to have X-rays this am. Then this morning as I was taking Boo out to put him on the bus for school-he fell out of his wheelchair! I just didn't get his belts on right (he's got a new seat/restraints for his wheelchair). I feel absolutely horrible. I took him straight to the ER and they checked him out. Everything is fine and the scrapes are superficial. He didn't need any stitches or anything but his mouth was bleeding like crazy. He may lose one of his front teeth but he's 5 and they are due to fall out in the next 2 yrs or so.

I know it's just an accident but it was a huge mistake on my part. I always double check everything before I take him out but didn't this time. He got hurt. I feel just horrible. I gave him some ibuprofen for the discomfort and he's acting fine. I just can't believe I didn't check him again before taking him out.

Don't be too hard on yourself, we all make mistakes. I'm sure he already forgives you . . . . time to forgive yourself. Look on the positive side - he'll be excited to get not just one but TWO surprises from the tooth fairy tonight!

 

[2specialkids]

I'm trying not to be, but I feel so guilty when I look at him.
It actully isn't too bad. He's got a fat lip and a few minor scrapes. The teeth still look ok just scraped around the gum area(sorry tooth fairy-you're gonna have to wait a bit longer).
He actually looks like my nephew did when he was running down the sidewalk and fell. Now that we've gotten him cleaned up better it doesn't look so bad-except for that huge fat lip.

 

[Sandy321]

what beautiful smiles everyone has!!

What a day! I hate when that happens, and there is nothing worse than mommy guilt!!

and if you cant do the park hoppers, I think Crystal Palace at the MK is a great alternative- unless they really dont like Pooh and friends - but you guys are the best judge of where to go - its all GOOD - its Disney!! and you need some magic now!!

 

[MagicMomentsMom]

Suzanne--I'm so glad you and I found each others trip reports! Nikolas is a CUTIE PIE! He has such a beautiful smile! I hope you guys have an awesome trip!
I was looking at your trip packing stuff and wondered if you had the phone numbers of Dr's in the area that were suggested by your at home Specialists? GenevaClaire's Dr's are giving me names/numbers of the dr's that they would want her to see if she became ill or hospitalized... I'm not sure if that's a concern or not.
Also for the feeding tube (not sure you need this stuff but I thought I'd put what I have on my packing list)
Ky jelly to reinsert the button
Sterile water to fill the balloon when you reinsert
Adhesive tape (just in case you don't have the replacement button with you you can reinsert the old one in the stoma and hold it open until you reach the hotel to put in the new button)
Dishwashing dtgnt? I'm staying on resort so I have to take some so I can wash out the syringes for DD--I refuse to use handsoap, yuck. But GKTW may have that stuff in stock, that I'm not familiar with.

Medical sheet for your park bag--listing diagnosis, meds, current treatments etc. Also have a seperate one for the hotel room so that if needed it can be given at the time without having to search thru the park bag for it. Just keep it in a plastic sheet protector taped to the back of the hotel door or to the wall beside the entry door-- EMT's around here call it a Rip Sheet or Tear Sheet--we have them in all our cars, in the house, in DD's bag, and at her school.

I'm so sorry about your DD's gym accident and Nikolas accident, but please don't feel guilty about it, we're human and sometimes mistakes happen, so don't beat yourself up over it!

I'm so glad you found me and I found you! I'm here for the journey now!

Veronica

 

[2specialkids]

Suzanne--I'm so glad you and I found each others trip reports! Nikolas is a CUTIE PIE! He has such a beautiful smile! I hope you guys have an awesome trip!
I was looking at your trip packing stuff and wondered if you had the phone numbers of Dr's in the area that were suggested by your at home Specialists? GenevaClaire's Dr's are giving me names/numbers of the dr's that they would want her to see if she became ill or hospitalized... I'm not sure if that's a concern or not.
Also for the feeding tube (not sure you need this stuff but I thought I'd put what I have on my packing list)
Ky jelly to reinsert the button
Sterile water to fill the balloon when you reinsert
Adhesive tape (just in case you don't have the replacement button with you you can reinsert the old one in the stoma and hold it open until you reach the hotel to put in the new button)
Dishwashing dtgnt? I'm staying on resort so I have to take some so I can wash out the syringes for DD--I refuse to use handsoap, yuck. But GKTW may have that stuff in stock, that I'm not familiar with.

Medical sheet for your park bag--listing diagnosis, meds, current treatments etc. Also have a seperate one for the hotel room so that if needed it can be given at the time without having to search thru the park bag for it. Just keep it in a plastic sheet protector taped to the back of the hotel door or to the wall beside the entry door-- EMT's around here call it a Rip Sheet or Tear Sheet--we have them in all our cars, in the house, in DD's bag, and at her school.

I'm so sorry about your DD's gym accident and Nikolas accident, but please don't feel guilty about it, we're human and sometimes mistakes happen, so don't beat yourself up over it!

I'm so glad you found me and I found you! I'm here for the journey now!

Veronica

Thanks-I think he's a cutie too (maybe just a bit biased ).

I'm taking a spare button & all it's goodies plus lists of meds for the villa, my bag, and my parents stuff so whoever has him has all the medical info. I'm also taking his most recent CT scan disks just incase that shunt acts up. All the current meds & scripts for each, seizure rescue meds, etc. We don't have any doc's recommended but I'm going to check with each of the specialists to see if they have any.

I've got laundry & dish soap since we've got to be picky about them as well. I'm picking up some minor groceries when we get there since we do a blended diet as well as Compleat. It's amazing all the stuff these kids have to have just to stay healthy. I downloaded some packing lists and am making one of my own based on them and all the stuff DS needs. It's gettin' kinda long... See this is why I'm making all these lists -DH thinks I'm nuts. He's staying here to care for the critters and hopefully be back to work then (laid off right now).

Sorry to hear the school germs "love" her too. This is why my kids stay home when they are sick-wish others realized that tylenol isn't the answer to not having to miss. We had that for the last 2 yrs but so far this year we've done pretty well. His teacher is a huge fan of antibacterial wipes, soap & water, and keeping the hands clean between each child.

Take care of yourselves and cuddle that sweet sick baby. It always makes mommy & the child feel a bit better. Praying that you can all stay home and she doesn't get worse. (Those visits to "club med" stink even when you really trust the hospital & staff.)

 

[2specialkids]

One of our wish volunteers emailed last night just to say, "hi! & we haven't forgotten about you." It's only 33 more days until we're on that plane!!!