Princess Peanut's WISH Trip CWF/GKTW Pre-Trip Report! *We're HOME - Pg.37*

[Mom2Miracles]

Sooooooooooooooo, BIG GIVE time!!!

We told this kids tonight about the trip. We decided with everything Peanut is going through right now, we felt she needed something to keep her going, something to get her excited. And well, we as a family need something to look forward to, together. Oh my, they were SOOOOO excited. Peanut just glowed. It was such a special moment, and I am just even more excited now!!

We got a package today from Cheryl - Dis: aboveH20. She made Peanut a beautiful outfit, and the best shirt for Monkey. They are awesome, and the kids LOVE them!! Cheryl, thank you SO much. The outfits are amazing, and the work you did was great. The letter you sent was very sweet too. It really brightened our day today, and trust me, we really needed it. BIG

Some pics, of course. The kids loved everything!!

This was their reaction when they saw Dadda with the box

 

[petals]

Aws they look so cute in their first big give outfit

 

[tinytreasures]

Aww they are adorable in their outfits

so sorry about the head aches

 

[Wonders10]

Super cute outfits! They look sooooo happy in those pics! I'm sorry she is getting the migraines. I get them too occasionally and they really are debilitating. I can't imagine a child having to deal with that on top of everything else she has going on Hope she is feeling better soon

 

[mommy2mrb]

so cute!! what sweet faces and happy smiles!

so sorry to hear about the headaches, I too suffer from them on occasion, so hope they can get her meds figured out...

yay that your paed said the trip is a go! will continue our prayers that next weeks hospital stay goes as planned, Peanut puts some weight on and her mic-key will be what will work for her .... I feel since its called a "mic-key" is will happen, pixie dust is in the works!

hope you have a nice, restful and happy weekend!

 

[Mom2Miracles]

Aws they look so cute in their first big give outfit

Aww they are adorable in their outfits

so sorry about the head aches

Super cute outfits! They look sooooo happy in those pics! I'm sorry she is getting the migraines. I get them too occasionally and they really are debilitating. I can't imagine a child having to deal with that on top of everything else she has going on Hope she is feeling better soon

Aren't they the best! I just love them, and so did the kids (and hubby). Her headaches are awful, and I really hope the meds start taking effect sooner then later. Its so hard to watch her going through them, because there is absolutely nothing we can do to ease her pain. You just feel very helpless.

so cute!! what sweet faces and happy smiles!

so sorry to hear about the headaches, I too suffer from them on occasion, so hope they can get her meds figured out...

yay that your paed said the trip is a go! will continue our prayers that next weeks hospital stay goes as planned, Peanut puts some weight on and her mic-key will be what will work for her .... I feel since its called a "mic-key" is will happen, pixie dust is in the works!

hope you have a nice, restful and happy weekend!

Love the Mickey reference for her tube, mic-key. I didn't even notice that, so maybe it will be good luck with her Wish trip coming up! They were so excited to get a present, their faces just lit up when Dadda came from the kitchen with the box. I loved it! Happy Saturday to you too!

 

[blessedmom4]

Poor little Peanut! David has severe migraines, diagnosed at age 5...it has been hard on him and he has suffered a lot...and NOW we can't get his meds d/t to the FDA...I will not rehash that here since I wrote all about it on our PTR a few weeks back...

As for the Mic-Key...I hope Peanut is able ot have one. we LOVE Lisa's and it has been a blessing! She has had it since she was three months old and it has blessed us so many times (which her docs like to tease me about because I was loathe to put one in, )

Now for the FUN and the Big Give!!! OH my GOSH, someone has been reading your PTR, those are so much like the outfits you wanted from Etsy! I am so happy you didn't buy them! They are going to be so adorable at Disney, cause they look so cute just modeling them! I am happy ALL of you have something fun to look forward to as you go through this...Is Peanut a candidate for home TPN? I used to set patents up on TPN at home when I was traveling for the home infusion company (even Pediatric patients) and it was great they didn't have to be in patient. Just something to keep in mind, monthly trips to the hospital aren't fun, I know.

 

[Mom2Miracles]

Edited...its all good.

 

[brookerene]

Oh those migraines... I am so sorry... I hope they can find some help for her!
That first Big Give is great! They look sooo cute..and I have to say Monkey is quite the ham for photos! I hope the gifts perk peanut up and help her to have something to look forward to during the time leading up to the trip and during her admit....

 

[Mom2Miracles]

Oh those migraines... I am so sorry... I hope they can find some help for her!
That first Big Give is great! They look sooo cute..and I have to say Monkey is quite the ham for photos! I hope the gifts perk peanut up and help her to have something to look forward to during the time leading up to the trip and during her admit....

He used to be the worst kid to photograph, OMG, it was brutal - he just didn't want to sit still and would jump around, ahhhh. Now hes just hilarious. He will give the biggest grin and yell "CHEEEEEEEEEEEEEEEESE" and get louder as he says it. It just cracks us up.

I think we made the right choice in telling them now, she is just so excited (so is Monkey). I just love seeing her light up when she talks about it, its enough to melt your heart. We told them we would be going the week after Easter (because they thought we were going NOW - ooops), so now she just keeps saying that she can't wait for Easter. She told me that she is excited to wear her Easter dress, and I told her we could bring her dress with us to Disney World. She looks at me and tells me that we can't bring it because she has a new Minnie Mouse outfit to wear. She thought we were going to Disney for one day, heehee. Love it!

 

[blessedmom4]

HELLO!!!

If she gets a mic-key, it wouldn't be something we could change on our own, she would always have to be sedated to have it done. Its more complicated to insert then a g-tube, remember she has a gj-tube, so it goes in to her small bowel. She can't handle anything in her stomach, let alone feeds and meds. BUT, we do hope she gets one. The one she has is such a pain, it hangs down so far (thats before you add on the extension for meds/feeds), and we have to have it taped down (and she uses a stat-lock). There is such a risk of it getting caught and pulled (which has happened ). The tape irritates her skin so much, that her skin is now so sensitive. Its awful.

We have talked and asked many times about at home TPN. There are just so many risks, and with her immune system the way it is, they are so afraid of infection. If we lose her port, we are in big trouble. They tried putting a PICC line in her right arm, and they couldn't advance it - her veins are too bad. They finally got one in her left arm, but she went septic after 2 months. So it was pulled, which led to the port. There aren't many other options (and the other central line access ideas aren't good - meaning, dangerous and ICU stays), so ya, it would be a very bad thing to lose it. The idea isn't off the table entirely, but I guess it comes down to how she handles being on the TPN and how she handles being off of it. She might not respond the way they want her to on the monthly treatments and it might be our only option. But spending a week, every month in the hospital is not ideal. But, as you know, ideal isn't always the easy way to get things done for your kids. You make sacrifices. I'm just tired of my kids always having to make the sacrifices and missing out. This first stay will be 7 days, and then I think they want to do 5 days every month after that, again, its just an idea and we will have to hash out the details when she is inpatient next weekend/the following week.

Aren't the outfits the best? Seriously, I was in awe. My husband just loved Monkey's shirt, he couldn't stop laughing (in a good way ) at how cute he was in it.

I did read about David's meds in your PTR. But remind me, what meds was he on? Is he on any now? Peanut was on edit, and while it worked wonders (she didn't have any bad episodes just mild ones), as we raised the doses she started getting bad side effects. She couldn't see straight or at all, she couldn't walk as she was so wobbly, it was awful. Then they put her on edit, which made her jacked up. She was wired - but in a weird way and she just didn't sleep. So we took her off that. So now she is on edit, but the dose was just increased after yesterdays episode and we increase it again next Friday (you can increase it weekly). Her Paed said it could take 2-3 weeks to really start to work, ugh, so I hope the increase dose at least works a bit better until it takes full effect. She started getting another migraine tonight, so we did the edit/cold cloth on head and in bed like her Paed suggested and she fell asleep after about 1/2 of crying in pain. She said some kids end up in hospital on IV meds to treat them, so i'm hoping we can get them under control to avoid that.

I change Lisa's Mic-Key button if she needs a new one, once the stoma heals it pops right in. I wasn't talking about ME putting it in though (Just me finally agreeing to letting them put one in vs. a NG tube) , she had to be hospitalized two days when she had the surgery for it and it was a six week healing process before they changed the tube over to a Mic-Key button.

As for home TPN, I KNOW you would be exceptionally careful (even more so than a hospital, because she is your Peanut ) to make sure sterility was maintained. Again, only you and the docs can determine what is best for Peanut, I wanted to make sure you know that is an option some choose. My biggest concern for both Lisa and David's veins is preserving them for the future...it is very tough when they need so many "IV things." Lisa is not a candidate for a port because of her heart and once a few times a month for David doesn't warrant it, thank goodness.

I find it is best to discuss meds with the MD's, especially since I am a RN, I never want someone to think I am trying to prescribe. IF this one passes FDA approval (and there is no reason it shouldn't) I will PM you David has been hospitalized for migraines and IV meds, before they diagnosed the PTC/ICH, his headaches were much worse. Now that they do Lumbar Punctures to relieve the fluid in his brian, he has far fewer migraines.

 

[blessedmom4]

He used to be the worst kid to photograph, OMG, it was brutal - he just didn't want to sit still and would jump around, ahhhh. Now hes just hilarious. He will give the biggest grin and yell "CHEEEEEEEEEEEEEEEESE" and get louder as he says it. It just cracks us up.

I think we made the right choice in telling them now, she is just so excited (so is Monkey). I just love seeing her light up when she talks about it, its enough to melt your heart. We told them we would be going the week after Easter (because they thought we were going NOW - ooops), so now she just keeps saying that she can't wait for Easter. She told me that she is excited to wear her Easter dress, and I told her we could bring her dress with us to Disney World. She looks at me and tells me that we can't bring it because she has a new Minnie Mouse outfit to wear. She thought we were going to Disney for one day, heehee. Love it!

I am SOOOOOOOOO Happy that has brought her such joy! How sweet and cute she truly is!!!!

 

[Mom2Miracles]

Edited...its all good.

 

[blessedmom4]

Oh no no, I wasn't asking beause I wanted to see if they would be good for Peanut, no worries. I was just curious for conversation sake.

I know some families who do change the buttons themselves, g-tube buttons are apparently very easy to change out - our Paed does them in her office. Then again, our Paed isn't just a regular Paed. She is the head of Pediatrics at our hospital, and is the head of the CF Clinic, and many other clinics (asthma, diabetes and does something in Oncology too). Shes a Paed but specializes in high risk kids. She doesn't take healthy, standard kids unless they are siblings of high risk kids, so she sees Monkey too. I knew you didn't surgically place it yourself, If you did... I guess we are talking about the same thing in terms of "changing" the button.

I'm glad they are able to control David's migraines by meds now, or by the lumbar puncture. I couldn't imagine that though, gosh.

We know TPN is an option, but its not likely a good for for Peanut - as much as we could like it for our families life. As as much as we want it, it doesn't mean her Drs do and we trust our Drs completely. If we didn't, we wouldn't be with them, you know? So at times we may want something different then they do, we have to trust their opinions on some things.

You should always have a spare Mic-Key once Peanut gets one, I am certain they will discuss that with you though, once it is placed...you might be somewhere that you HAVE to change the button and will need the correct size... As for the TPN, I must have read what you wrote wrong, I thought you said she was possibly going to need TPN once a month for five days...let me clean my eyes out and re-read more carefully, sorry!

ETA: As for David, they don't do LP's for his migraines, they do them for his PTC/ICH....which helps his migraines because the cerebrospinal fluid presses his brain, causing severe pain (in addition to his migraines).

 

[Mom2Miracles]

Edited...its all good.

 

[blessedmom4]

I did say TPN, I meant to add "home" before that. My fault, no need to clean your eyes. lol! Its home TPN that is likely not good for Peanut. When she goes in on Friday, it will be for a week on TPN. Then the treatment plan they want to put in place, will be inpatient for 5 days a month of TPN. I'll go edit so it makes sense.

Ahh, gotch about David. Poor kid.

As far as a spare tubes go, if her tube comes out now, we have to insert a new tube to keep the incision open and head to the hospital for an entire new placement. My guess is that will be the same situation with a mic-key (should she get one), insert new tube and head to hospital - but I could be wrong. We'll see how that all pans out too when shes inpatient. We only put the tube in a few inches, like I said just to keep the incision open.

Gotcha NO need to edit, you were clear. I just wanted to make sure you knew that some children were able to have TPN at home, it sounds like that isn't a comfortable or good fit for Peanut and you already knew that is an option for some. As you said, her doctor's DEFINITELY know her the best! (That is why I try to be careful if I do venture into asking medical stuff/questions on PTR, the docs are the boss. I am always looking for ways to avoid the hospital).

ETA: Kristy, You should be able to PM me now. 0

 

[kayrosek]

What adorable Big Give outfits. Your Peanut and Monkey are so cute in them. Sorry to hear about Peanuts migraines. My DD12 has been getting at least a few a week for years now so I know how horrible they can be. I started reading your PTR awhile back but don't know if I ever posted, then I lost track of it, now I'm back. Can't wait to see what other surprises you get from Big Give and your trip is so close. I bet the kids are so excited now that they know.

 

[Mom2Miracles]

What adorable Big Give outfits. Your Peanut and Monkey are so cute in them. Sorry to hear about Peanuts migraines. My DD12 has been getting at least a few a week for years now so I know how horrible they can be. I started reading your PTR awhile back but don't know if I ever posted, then I lost track of it, now I'm back. Can't wait to see what other surprises you get from Big Give and your trip is so close. I bet the kids are so excited now that they know.

HELLO!! I hope the Big Giver stops by to see the pics, I want her to know how much we appreciate them. I'm sorry your daughter deals with migraines too, I hope you have found a way to control them or to keep her comfortable. Poor kiddo.

 

[Mom2Miracles]

Trip questions...

I've seen mention of Wish Lounges, one at MK and one at Epcot, is this correct? Are they both great, is one better then another? If we were to do just one, which one would you suggest?

How does parking work at the parks? I've seen mention that if you flash the wish button or another button (not sure what exactly??) you get preferred parking, is this true? Now when we park, is it a far walk to the actual park? We are getting a double stroller for the kids, so they will be okay but I have no idea how this all really works.

Our character meals are at Akershus and Cape May at 820 and 850am, respectively. How much time do we need to give ourselves to get from GKTW to the restaurants so we aren't late? Do we need to be at the restaurants earlier then our reservation time?

Thats all for now...thanks!!

 

[mom2pixies]

Those Big Give outfits are adorable!