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

[blessedmom4]

Hi Judy.

Last night was a horrible night for Peanut, pain wise. She was sooo sore. The morphine is doing wonders for her today and she is finally comfortable. She isn't moving at all though, so hopefully in the next day or so we can get her up and around. Baby steps, right?

Definitely baby steps, it hurts my heart to hear of the pain she had, poor sweetheart! Thank the good Lord for morphine! Praying the recovery is swift and the pain is non-existant!

 

[tinytreasures]

Hi Judy.

Last night was a horrible night for Peanut, pain wise. She was sooo sore. The morphine is doing wonders for her today and she is finally comfortable. She isn't moving at all though, so hopefully in the next day or so we can get her up and around. Baby steps, right?

hope she feels better soon and that she gets the medical care she needs asap

 

[teresajoy]

Just wanted you to know that I've been reading Your story has really touched me, thank you for sharing your family with us.

 

[Mom2Miracles]

Thanks girls, your good thoughts mean a lot.

 

[xanphylus]

Will keep you guys in my prayers! Hope peanut feels better soon!!!

 

[maroo]

Is anyone even reading this? lol...I don't want to post to myself....

I posted this over in the Wish thread, but didn't really get any responses. I need help trying to plan some things and while i've gotten some good adice on where to look for things, its quite overwhelming.

We have to do BBB for my daughter, no questions asked. I know its better to book early, but I can't until our dates are finalized. I've heard its in 2 locations, is one better then the other?

My daughter ADORES the Princesses, Cinderella is her ultimate favourite, but has a soft spot for Belle and Ariel. lol...best suggestions for seeing there, or where to see them?

My son loves Toy Story (and Cat in the Hat), I know where to find the Dr Seuss stuff - IOA, right?, but what about TS. Buzz, Woody & Jessie?

eeek!! I feel really bad for just seeing this!

I did put your TR on the Wish Trippers thread!!

But it looks like a lot of folks found ya!! And I think you got a lot of answers, too.

Thanks girls. I don't think we'll have to deal much with her food issues, since she doesn't really eat orally. Its just nice to know that should there be anything special, that it is a possibility. As it stands now, she can only have tiny amounts of fruit (or veggies) - and there are days and weeks that go by that she has nothing. She can't eat anything that require her enzymes, which is essentially only fruits and veggies. But we might be able to make exceptions on small bites of things here and there on the trip. Its good that they are so understanding of kids and allergies, and work with familes to ensure no one is left out. I would hate for any child to miss out because of an allergy.

So i'm starting to panic about her surgery on Tuesday morning...and it doesn't help that she seems to be getting sicker. She needs this surgery and we do not want it delayed (for more then one reason), so I hope whatever bug she has is gone, or is mild enough that they will still do the surgery. Why is there always something??

I missed the whole thing...but praying now!!!

Hi! And welcome to the boards!! I'm so sorry your family and your little Peanut and Monkey have been through so much . . . too much! We have unfortunately dealt with infertility, loss of pregnancies, and a child with severe medical issues as well. Our daughter gets all of her care at CHOP, they are wonderful there. I hope you get cleared to go there! I know your Wish trip will be a happy memory for you all. We just had our trip over the New year, it was amazing!



We didn't do BBB, but I don't think one is better than the other. Just that the one in MK is more convenient because you'll already be in the park.

We did breakfast at Akershus, you get a picture package with Belle there. The princesses we saw that day were Snow White, Mulan, Mary Poppins, and Jasmine. I liked seeing the princesses at a meal because I didn't feel like we were taking too long like I sometimes felt when we got to cut the lines. We saw Ariel and Princess Tiana in Magic Kingdom, Ariel in adventureland and tiana in frontierland. I think you might only be able to see Cinderella at Cinderella's Royal Table, or 1900 Park Fare restaurants. Then, you can also see Cinderella, Sleeping Beauty, and Belle in Magic Kingdom at the Princess Meet and Greet. We saw them and the Fairies in Mickey's Toontown Fair where we got to skip the line with our GKTW button. They might be in a different location by the time you go though because they are redoing that area of the park. ???

We saw Woody and Jesse in the MK daytime parade and got to dance with them! They do meet and greets in frontierland and buzz does greets by his ride in tomorrowland (We never got to see them there though). There is a Toy Story ride in DHS, but I don't know if the characters are there. I think you might also be able to see them in a the Epcot Character spot, or it might be in the animation studio at DHS. Not sure on that, maybe somebody else can clarify!

Hope that helps some!

Get the Times Guide for each park when you enter each day and it will give you times and locations for characters.

Hi smileycrissy.

So today has been a long day. We packed up and travelled the 2.5 hours to see her GI Specialist and get ready for her surgery in the morning. We have to be at the hospital at 6am, and her surgery is scheduled for 8am. I am sooo nervous. We aren't sure how long they are going to keep her post surgery. We've heard some say she'll be going home say day (with quite a few shocked by this prospect) and a few - her GI doc included, who have said to get comfy, she'll be there for a few days. So I have no idea what is going on, and I hate not having a plan.

Her GI doctor put the application for out of Country care to our Government, so we now wait. Apparently it takes 4-8 weeks to hear back, and barring any hold ups he is pretty sure it should go through and hopefully in the next few months, we'll be at Nationwide Children's Hospital in Columbus Ohio. He is thinking a 2 week admission, for a full range of testing and hopefully we get some concrete answers. He decided after much research that the best place for her to be is there, rather then Children's of Cincinatti or Children's of Philly. So we now wait. He said every 2 weeks he wants us calling him so he can get on calling the Government, so that is what we will do. He thinks that her history is telling enough and that he is hoping that everyone else will see that she can't go on the way she has been. That she needs things that Canada can't offer her anymore. He said its only costing the Government more $$ keeping her here. He said, if she doesn't get the help she needs sooner then later, he is worried of what the outcome is going to be. He did say that possibly sooner then later, we need to consider at home TPN. While using it at home is dangerous, he said we might need to take the risks of her getting an infection in her port because something needs to give health wise and weight wise. He said, we are getting to the point with her, that her low weight and malnutrition is more dangerous then the possibility of at home TPN. That is something we need to discuss with her Paed and Dietician back home on Friday.

He is also putting in a referral for her to see an Immunologist, for her IGA deficiency. He is wondering if she would benefit from IVIG therapy. So we'll see what that brings when she gets in.

So somewhat of a productive day, somewhat frustrating. In the end, as long as we can get Peanut the care she needs, then we'll do whatever we have to.

Thanks for the tips Joanne!! I'm going to read your day 2 TR report tomorrow. Can't wait!

Hi Judy.

Last night was a horrible night for Peanut, pain wise. She was sooo sore. The morphine is doing wonders for her today and she is finally comfortable. She isn't moving at all though, so hopefully in the next day or so we can get her up and around. Baby steps, right?

I hope she is feeling much better!!!!!

 

[casper_jj11]

Hi Kristy. How's Peanut feeling this morning? I so hope the pain has subsided. You've been in my thoughts the past few days. Hang in there.

 

[Mom2Miracles]

Hi girls, thanks for checking in. Today has been a good day thus far (its only 1030am mind you), the pain meds are really helping her. She is currrently sitting up (well, somewhat sitting up leaning on a pillow) and colouring on the couch. So happy that we seem to be making some progress. We are going to try walking this afternoon after "quiet time" - AKA, nap time. lol. The pain meds are definitely helping her, which is a relief but we want to get her off them. We are going to try and wean her from the morphine today (of course hoping that she will do okay without it) and get her back on Tylenol/Advil. Morphine can slow your bowels, and for her that is a bad bad thing. We talked to her Paed yesterday morning, and re-started her feeds last night, so far so good. We have to work her back up, but we can do it quicker then after a tube change, so that is good. She has her weekly appt tomorrow morning, so her Paed can look at her incisions to make sure everything looks okay so far. As of now *knock on wood*, so fevers so that is really good. Finally, something that went smoothly for Peanut.

Hopefully our package comes soon from our wish co-ordinator, i'm antsy. lol. I was hoping it would have been here Tuesday or Wednesday, but nothing. I'm not even sure the mail was being delivered yesterday with the storm, so maybe today?

 

[smileycrissy]

Hi Kristy.

So glad to hear Peanut is doing better today!!! Hopefully she'll continue recovering nicely. Sending pixie dust for a speedy recovery and that your Wish package arrives today.

 

[blessedmom4]

Continued Prayers!!!!

 

[Mom2Miracles]

No wish package today. Boooooooooooo..................

 

[blessedmom4]

No wish package today. Boooooooooooo..................

It is coming...Think of all of the when it does!!! How is Peanut doing this morning?

 

[smileycrissy]

It is coming...Think of all of the when it does!!! How is Peanut doing this morning?

I agree with Judy, you'll be dancing on the ceiling when that package comes in.

 

[Mom2Miracles]

I agree with Judy, you'll be dancing on the ceiling when that package comes in.

I'm sure I will be. And i'm sure my kids will think i'm nuts. Nothing today again.

Today has been another positive step in the right direction for her recovery from surgery. She is walking now, YAY! Its slow going, and its not a lot, but its a start and good progress. Shes off the morphine now (hasn't had a dose since yesterday morning), and is only getting Advil & Tylenol as needed. Only once so far today. Her Paed said things are looking good incision wise, so another good report. The steri-strips should come off in about a week, but they said that last time (when she had her port placed) and she had major issues with the stiches coming through. Part of that is the way her body heals though (as in, it takes a long time to do so), so hopefully things heal well this time.

We spoke about what her GI Specialist said with everything and with regards to the TPN. She said we'll give her another few weeks to see what her body does before we talk more or consider home TPN. Its the LAST thing I want (the last thing anyone wants), but we need to do what is best for Peanut. I'm worried that her Dr will push for hospital TPN before home TPN, which we DO NOT want. I just hope we can get her weight to go up or least remain stable - no more dropping, and then we can hopefully avoid TPN (for now anyways). Her weight was up 100 grams today, which is next to impossible. But she is backed up, which is attributing to that. You can tell just by looking at her, her stomach is so distended. So we had to up her bowel meds, and just after the first dose increase, she went. Thank you anesthetic and morphine for slowing down my daughters bowels even more then they already were. We have to increase the two meds to 3 times a day from 2, so we'll see how the next few days go. And then next week we'll see how things are weight wise. Her Paed is very happy with how things are progressing with the referral to the States, now we just need to wait and see what the Government sais. Fingers crossed we get the news we want and need.

I have the WORST headache right now, i've had it for like 2 weeks now on and off. And I am soooooo tired. I wanted to go out and run some errands this afternoon, but I am just beyond exhausted. I feel like I haven't slept in ages (of wait, I haven't ).

 

[xanphylus]

Hurray for feeling better!!!!

 

[tinytreasures]

Glad she is doing better. Hope you get your info soon and that you get to come to the states for treatment too

 

[brookerene]

Glad to know things are looking a little up...Make sure you get the rest that you need... I can't say it enough...moms need their rest to be able to keep helping their kids....! People tend to forget that! I hope the health system allows you to follow up on the referral.... Take care!

 

[blessedmom4]

 

[Mom2Miracles]

Thanks for the continued hugs and support, it means a lot. Love Piglet, Judy.

Peanut is doing quite well today, she is walking and moving - though still slow going. But we are getting there. I am soooo happy, as I was really nervous going in. The surgery was needed (which we knew going in, but of course we still doubted it). Her surgeon told us afterwards, that things had gotten to the dangerous point and she was moments away from it being an emergency situation. So that was good to know we made the right choice to go ahead with the surgery, but of course its hard not to worry. Peanut has a tough time healing, and while she is physically doing well (knock on wood) we still have to get through the incisions healing. When she had her port put in, the internal stiches started pushing through the surface (which aren't supposed to happen), and it was a good 6 weeks before the actual incision healed. Her Drs said that he body has a hard time accepting foreign things, so it tries to rid itself of them (which is also why we've had troubles with her gj-tube) Ugh. So I of course worry about that with these incisions (there are 2). Shes already feeling itchy, so we have to cover the steri-strips so she can't itch at them (the internal stiches are bothering her which is what happened with the port). The last thing we need is for her to get an infection, or for the steri-strips to come off prematurely.

Make sure you get the rest that you need... I can't say it enough...moms need their rest to be able to keep helping their kids....! People tend to forget that!

I know, and thank you. Its funny because I am so good at giving advice to others, but I can't follow it myself. I find that I just don't think about myself. My husband is amazing, and always makes sure I am eating and getting what I need. He encourages me to get out, even if its just to run errands. But its hard to focus on me. I feel guilty, and Peanuts care is just so busy - there is always something to do. Meds (which is literally never ending through the day), feeds, cleaning supplies, changing bandages, Drs appts, our other child who needs just as much as she goes, etc etc. and then there is normal every day life. I've been sick more in this last year then I have ever I think. I am run down - I can admit it, but i'm sure you know, its hard to take time for yourself when you have kids. And then you add in a sick child, well, its hard. But thank you for encouraging me to take care of me more.

So i'm cross posting this from the Wish Trippers thread...I need help with dates.

Dates, I need help. We need to get 2 sets of dates together (first and second choice), and i'm not sure what to do. We were originally thinking Easter, but i've heard that time of year is crazy busy - yes? And then I thought (after someone else mentioned it), maybe going at Easter would just be too busy for things we want to do. But then, spending a holiday at Disney would just be magical. I don't want it to be overwhelming busy though. Then we thought about the week after Easter. So Easter Monday is April 25th (wow, its crazy late this year), and thought of going later that week. Would it still be super busy? Or what about the first week of May? We also want it warm enough for some water play (especially since my daughter hasn't been able to do any of that in the last year with all of her surgeries), and of course warm enough to enjoy being at Disney without sweaters (think coooold Canadian winters ). Either way, we want to be there sometime in April/May. So, suggestions?

 

[blessedmom4]

That worked! I wanted you to know I was thinking about you and Praying Peanut, and therefore Mom, had a GREAT day!