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

[Wonders10]

That sounds exciting about Peanut being a poster child! Well, you know what I mean - I hope

I'm so sorry that she is having weight issues again. I will be thinking good thoughts that her appt goes well enough that she doesn't need to be admitted.

 

[casper_jj11]

Oh Kristy. My heart goes out to you. If you're concerned about Peanut breathing, have you thought about getting an angel care monitor. It's meant for babies but if Peanut is that deep asleep and you're concerned, I expect it would work for her as well. It does have false alarms but my thought is, I'd rather have a false alarm than have no alarm and not know... others do view it differently though. I had one for Sydney and used it for Caiden even though he had had no signs of problems. It went off one night and I just thought it was a false alarm (happens when they roll off the detector pad). When I went in, he wasn't breathing. It took me shaking him to get him to gasp in. He was only about 4mo old but I used it til he moved too much to stay on it. There's a pad that goes under the mattress. It detects movement from breathing. If there's no movement for a certain period of time, the alarm beeps. I'm not sure if it would work with a thicker mattress but if not, there must be something that can be used for older children or adults... maybe something that detects problems related to sleep apnea?

 

[blessedmom4]

Kristy, My heart aches for you! Sending LOADS of prayers your way!

 

[Mom2Miracles]

Hugs for you and peanut how stressful.
Are they changing up her feedings to add more weight on?
Wish I was closer to hold your hand as you go thought this

They have already tried adding 1.5 cal to her regular 1 cal formula, but at this point we haven't had success. They were talking about adding some sort of oil to her formula (I can't remember at this point what it was, because it was something that was discussed in passing). She isn't absorbing everything properly (which is one of the million dollar questions - WHY?), and in all reality isn't able to take in the amount she needs to gain steadily. Thanks for being so supportive, it means a lot.

That sounds exciting about Peanut being a poster child! Well, you know what I mean - I hope

I'm so sorry that she is having weight issues again. I will be thinking good thoughts that her appt goes well enough that she doesn't need to be admitted.

I know what you mean, lol. Thanks, she was very excited. She even took a copy of what they are using with the staff (her picture is on it) to school today. She couldn't wait to show everyone. Thanks for the good thoughts, it means a lot.

Oh Kristy. My heart goes out to you. If you're concerned about Peanut breathing, have you thought about getting an angel care monitor. It's meant for babies but if Peanut is that deep asleep and you're concerned, I expect it would work for her as well. It does have false alarms but my thought is, I'd rather have a false alarm than have no alarm and not know... others do view it differently though. I had one for Sydney and used it for Caiden even though he had had no signs of problems. It went off one night and I just thought it was a false alarm (happens when they roll off the detector pad). When I went in, he wasn't breathing. It took me shaking him to get him to gasp in. He was only about 4mo old but I used it til he moved too much to stay on it. There's a pad that goes under the mattress. It detects movement from breathing. If there's no movement for a certain period of time, the alarm beeps. I'm not sure if it would work with a thicker mattress but if not, there must be something that can be used for older children or adults... maybe something that detects problems related to sleep apnea?

Thats a good suggestion, thank you. I hadn't thought of that, so i'll definitely look in to one because i'm sure it would help me sleep more soundly at night without worrying every second. If it can't work under a regular matress, I could probably just put it under her sheets but pad it with some blankets so she doesn't feel it.

Kristy, My heart aches for you! Sending LOADS of prayers your way!

Thanks hun, it means a lot that you are thinking about us and our little Peanut.

 

[tinytreasures]

That Angel Care monitor sounds wonderful. I have always thought about getting one. Now I plan to with our next foster baby.

Hope they figure out what is wrong with her and you don't have to go in the hospital.
Add weight vibes coming your way

 

[mom2pixies]

Consider me a subscriber! Loved reading your story and looking at your children's photos. (Um...gorgeous kids, much?!?!)

Sorry to hear about your daughter's latest tube-feeding troubles! Sounds like it's been a tough time. I'm not certain where you are located in Canada--but being a fellow Canuck, I'm sure you could use some sunshine from south of the border to help brighten up your days. Maybe some of the DISboard members can virtually send you some?

Funny thing--I call Brooke 'Peanut' while my husband calls her 'Monkey!'

 

[Mom2Miracles]

That Angel Care monitor sounds wonderful. I have always thought about getting one. Now I plan to with our next foster baby.

Hope they figure out what is wrong with her and you don't have to go in the hospital.
Add weight vibes coming your way

I've been looking up the monitors and think we are going to get one. I think it will really help ease our mids. We've been thinking of taking her back to the Dr today, siiigh. She is just not herself today, and just feeling very of. Though I have a feeling that if I take her in today, she will be admitted, which I don't want. And thanks for the weight vibes, they are much needed.

Consider me a subscriber! Loved reading your story and looking at your children's photos. (Um...gorgeous kids, much?!?!)

Sorry to hear about your daughter's latest tube-feeding troubles! Sounds like it's been a tough time. I'm not certain where you are located in Canada--but being a fellow Canuck, I'm sure you could use some sunshine from south of the border to help brighten up your days. Maybe some of the DISboard members can virtually send you some?

Funny thing--I call Brooke 'Peanut' while my husband calls her 'Monkey!'

HELLO, and thanks for subscribing! I could use some sunshine for more then just weather, but I will take it considering how cold it is here, lol! Love the names you have for your kids, lol.

 

[VBAndrea]

Good to know about Nemo, it was on our list of things to see there. Hmmm...something to think about.

On a side note, I booked T-Rex last night for when we hit DTD on our last day!

I just happened upon your PTR and first want to say what a beautiful famly you have! I can't even beging to imagine all you have been through. I have two healthy children and had just one m/c which was devastating to me -- I so feel for everything you have been through. I am so thankful you have the two gorgeous children that are thriving -- yes, Monkey has her health issues, but she's obviiously a keeper and a cutie at that!

Anyway, I had to chime in on Nemo. My children were 5 and 7 when we went to Disney and they LOVED Nemo. We rode it over and over and over. Lines were not long and you should be able to use the handicapped access entrance since you will be on a Wish Trip. I would absolutely keep it on your list -- I think your children are at the perfect ages to enjoy it.

 

[tinytreasures]

Praying for Peanut.
I hope you are no in the hospital

 

[mommy2mrb]

Hi Kristy,
I've been reading your story the last couple of days and my heart goes out to you and your family!
Your Peanut sounds like such a brave little warrior! for all she has endured and still smiles is so inspiring!
So happy that her wish has been granted and you will all have so much fun at Disney World, you are so deserving of this magical trip!
I will keep you all in our prayers....hope Peanut is feeling better today!

Blessings to you all!
Lisa

 

[Mom2Miracles]

I just happened upon your PTR and first want to say what a beautiful famly you have! I can't even beging to imagine all you have been through. I have two healthy children and had just one m/c which was devastating to me -- I so feel for everything you have been through. I am so thankful you have the two gorgeous children that are thriving -- yes, Monkey has her health issues, but she's obviiously a keeper and a cutie at that!

Anyway, I had to chime in on Nemo. My children were 5 and 7 when we went to Disney and they LOVED Nemo. We rode it over and over and over. Lines were not long and you should be able to use the handicapped access entrance since you will be on a Wish Trip. I would absolutely keep it on your list -- I think your children are at the perfect ages to enjoy it.

Thank you for stopping by, I love having new visitors along for the ride. Peanut is definitely a keeper, we tell her all the time its a good thing she is so cute, lol. Thanks for your input about Nemo. Its so hard to know what to see and what to skip. I value everyone's input, but of course everyone views things differently. I guess worst case is, we go to see something/do something and we don't like it, we just move on. My kids do love Nemo or Memo as Monkey calls it!

Praying for Peanut.
I hope you are no in the hospital

Thanks hun! No hospital for now, but its defiitely in her near future unless something drastic happens in the right direction. We saw her Paed twice this week, and had to adjust some meds, increase one and change another. We talked to her Dietician today too, who said that she was going to push for an admission next Friday if her weight drops any more. But she said it looks like our Paed is on the same wave length anyways. Siiigh. We are taking her off the 1.5 cal formula too, and just going back to the straight 1 cal because she isn't tolerating the 1.5 cal (they think its just too concentrated for her body to handle). Maybe she'll start handling the feeds better, and her bowels will start moving again (at least, like they were before). Shes already had one enema this week and will have another one tomorrow. So its been a frustrating and long week, lots of talking and planning, lots of stress and and figuring things out. She said that if they do admit her for TPN, she'll be there for a bit. Sorry, that was a lot of rambling...

Hi Kristy,
I've been reading your story the last couple of days and my heart goes out to you and your family!
Your Peanut sounds like such a brave little warrior! for all she has endured and still smiles is so inspiring!
So happy that her wish has been granted and you will all have so much fun at Disney World, you are so deserving of this magical trip!
I will keep you all in our prayers....hope Peanut is feeling better today!

Blessings to you all!
Lisa

Hi Lisa, thanks for reading. Peanut is braver then brave, and truly makes me so proud every day. I often ask myself where she gets her strength from, but she definitely teaches me so much. Both of our miracles are amazing.

 

[brookerene]

Poor little one...I'm glad for no admit, but like you said they prob will.... one enema is more than enough for anyone...let alone having to do it again. I hope she will turn around and gain some weight....

Oh yes and ramble all you want!

 

[Mom2Miracles]

Poor little one...I'm glad for no admit, but like you said they prob will.... one enema is more than enough for anyone...let alone having to do it again. I hope she will turn around and gain some weight....

Oh yes and ramble all you want!

Hi Brooke! Thanks you. I hope something kicks in soon - i'm not sure what, just something. Something to make her feel better, and something to get the weight to melt on, rather then off.

 

[blessedmom4]

Anyway, I had to chime in on Nemo. My children were 5 and 7 when we went to Disney and they LOVED Nemo. We rode it over and over and over. Lines were not long and you should be able to use the handicapped access entrance since you will be on a Wish Trip. I would absolutely keep it on your list -- I think your children are at the perfect ages to enjoy it.

Thanks for your input about Nemo. Its so hard to know what to see and what to skip. I value everyone's input, but of course everyone views things differently. I guess worst case is, we go to see something/do something and we don't like it, we just move on. My kids do love Nemo or Memo as Monkey calls it!

I agree that you really simply have to take what everyone says with an open mind, we all have our favorites. Nemo was cute; however, not worth the 25 minutes we spent waiting to ride, IMHO. Would I ride it again? Absolutely, if there wasn't a long wait. There are other rides I would rather see more. I agree with VBAndrea that this was fun for little ones (My girls were 4 and 8... I think) when we rode it. Cute, just quick. Didn't mean to imply take it off your list, just didn't meet the hype of waiting so long to see it for us. It is like the debate over CRT vs. Akershus...Haven't had the pleasure of CRT; However, Askerhus was a GREAT fit for us...not as hectic in my opinion as the other meal we had at Chef Mickey's...yet there are those who LOVE CM!!! That is the beauty of Disney, there is something wonderful for EVERYONE to love and your MAW button should get you in to see a LOT of things...I know you were worried about time and fitting things in, that was where I was coming from when I said that.

In other thoughts... Praying SO HARD for you and Peanut, i hope this weekend has been good!

 

[Mom2Miracles]

I agree that you really simply have to take what everyone says with an open mind, we all have our favorites. Nemo was cute; however, not worth the 25 minutes we spent waiting to ride, IMHO. Would I ride it again? Absolutely, if there wasn't a long wait. There are other rides I would rather see more. I agree with VBAndrea that this was fun for little ones (My girls were 4 and 8... I think) when we rode it. Cute, just quick. Didn't mean to imply take it off your list, just didn't meet the hype of waiting so long to see it for us. It is like the debate over CRT vs. Akershus...Haven't had the pleasure of CRT; However, Askerhus was a GREAT fit for us...not as hectic in my opinion as the other meal we had at Chef Mickey's...yet there are those who LOVE CM!!! That is the beauty of Disney, there is something wonderful for EVERYONE to love and your MAW button should get you in to see a LOT of things...I know you were worried about time and fitting things in, that was where I was coming from when I said that.

In other thoughts... Praying SO HARD for you and Peanut, i hope this weekend has been good!

Oh goodness, I REALLY appreciate your feedback. No worries, none! Thank you! In the end, it isn't about what I want or what my hubby wants (well, maybe just a wee bit ), its about the KIDS. I just want them to be happy, and for them to have the time of their lives - especially with everything we are going through right now.

Thank you, its been a rough weekend, but all we can do is take it one day at a time. Lots of cuddling though, which I secretly love - but would give up in a heartbeat if she was feeling 100%. Its bittersweet....

On a side note, who do I call about the character meals with questions? Do I call each restaurant individually? Or is there a main # I can call for all of them? I booked 3, though we may only do 1 or 2, but I wanted to at least have something booked (since time and reservations were running out). I want to find out about the meal costs with regards to Peanut, who won't be eating at them. And i'd rather know now then to be surprised at the door. I also want to have the option to cancel now to be fair to others if we don't want our reservation(s).

 

[mommy2mrb]

Oh goodness, I REALLY appreciate your feedback. No worries, none! Thank you! In the end, it isn't about what I want or what my hubby wants (well, maybe just a wee bit ), its about the KIDS. I just want them to be happy, and for them to have the time of their lives - especially with everything we are going through right now.

Thank you, its been a rough weekend, but all we can do is take it one day at a time. Lots of cuddling though, which I secretly love - but would give up in a heartbeat if she was feeling 100%. Its bittersweet....

On a side note, who do I call about the character meals with questions? Do I call each restaurant individually? Or is there a main # I can call for all of them? I booked 3, though we may only do 1 or 2, but I wanted to at least have something booked (since time and reservations were running out). I want to find out about the meal costs with regards to Peanut, who won't be eating at them. And i'd rather know now then to be surprised at the door. I also want to have the option to cancel now to be fair to others if we don't want our reservation(s).

hope everyone is feeling better tonight

as far as your dining ??? maybe call the ADR # it is 407-939-3463 if you don't have it and ask to speak to a supervisor I would think they could/should make some sort of concession and not charge full price for Peanut....or maybe your MAW coordinator might know more too!

 

[Corrine 1973]

Started reading your PTR and got to page 6 but since it is time to go to bed I will have to catch up with the rest tomarrow.It gives me something to look foward to tomarrow.

I am very sorry that your family has gone through so much in such a short amount of time. You definalty deserve some Disney Time, and GKTW is truely a magicaly place as well.

We went in September of 2009 and had the most wonderful time. Can't wait to read to rest tomarrow.

 

[Mom2Miracles]

hope everyone is feeling better tonight

as far as your dining ??? maybe call the ADR # it is 407-939-3463 if you don't have it and ask to speak to a supervisor I would think they could/should make some sort of concession and not charge full price for Peanut....or maybe your MAW coordinator might know more too!

Awe, you are sweet. We are all on the mend, finally. The kids finished their antibiotics yesterday, and I finish mine on Wednesday. Thanks for the #, i'll give them a call sometime this week.

Started reading your PTR and got to page 6 but since it is time to go to bed I will have to catch up with the rest tomarrow.It gives me something to look foward to tomarrow.

I am very sorry that your family has gone through so much in such a short amount of time. You definalty deserve some Disney Time, and GKTW is truely a magicaly place as well.

We went in September of 2009 and had the most wonderful time. Can't wait to read to rest tomarrow.

Hello, thanks for reading. I'm glad your family had such a wonderful time at Disney and GKTW, I can't wait for our trip.

 

[blessedmom4]

Awe, you are sweet. We are all on the mend, finally. The kids finished their antibiotics yesterday, and I finish mine on Wednesday. Thanks for the #, i'll give them a call sometime this week.

Please don't be discouraged if you don't get a personalized response from the Disney Dining Number. From what I understand, they are at a central location and give everyone very standard answers. I have been hanging out on the DIS off and on for a long time (even before I registered) and have seen this question multiple times....it first caught my attention because Lisa has a feeding tube and eating has always been an issue for us. i DO think you will have Pixie Dust sprinkled on you at the Dining Destination...maybe I am too much of a Pollyanna, but I DO Believe!!!

 

[tinytreasures]

Checking in to see how things are going