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

[casper_jj11]

Good luck tomorrow. I'm so glad Peanut was able to get in sooner than expected.

 

[tinytreasures]

Since you've been there, what generally happens at the first appt? They mentioned blood work, and I know her GI Specialist mentioned that IVIG therapy might be something that would benefit her (but of course he wasn't 100% sure that would be something the Immunologist would agree with). Would they just take her history and call it a day (and do the blood work too)? Why do your boys see an Imunologist? If you don't mind me asking.

Jason has Primary Immune deficiency he was on IVIG for 7 yrs. It was a lifesaver for him. He put on weight as soon as we started it. He is really little too (he is 13 and the size of a 8/9 yr old)
Hayden sees the same dr for his arthritis.
They did take a bunch of blood on our first visits. It was a great appointment because they went back to day one and over EVERYTHING. He really tried to piece things together to get the boys their best treatment. It was a good 90 min appointment. We go every 6 months now and it is about 45 mins each child now. At every appointment they go back over everything since our last appointment. Now I just started calling and saying can you add that J needed abx for xyz on this date so I don't have to remember everything.

 

[blessedmom4]

Praying this doctor provides the answers you need. I so relate to having to fight/search for answers to the medical mysteries!

 

[blessedmom4]

 

[tinytreasures]

 

[teresajoy]

I love what you've picked out on Etsy! I'm just hoping you didn't order anything yet.

 

[Wonders10]

Hi there!

I just read through your first page and I'm hooked. What a beautiful family you are...looking forward to reading how this Wish trip turns out.

 

[Mom2Miracles]

Praying this doctor provides the answers you need. I so relate to having to fight/search for answers to the medical mysteries!

Thank you, what a cute graphic (both of them, actually). Isn't the fight just so draining?

Thank you.

I love what you've picked out on Etsy! I'm just hoping you didn't order anything yet.

Hi there!

I just read through your first page and I'm hooked. What a beautiful family you are...looking forward to reading how this Wish trip turns out.

Hi Shannon, thanks for stopping by. Looks like you are going to Disney soo too!

Well, we are back. It was a very long day, but we got through it. The travelling is so much, especially when going both ways in on day. Both Peanut and Monkey are sick, though Peanut is just starting it so she is really out of it. Monkey is at the tail end, so he is a bit more like himself. Thank goodness, the boy little is so pitiful when he is sick. Its so sad yet so cute, lol. Last night was awful, spiking fevers and today she held a low grade fever all day. She was so sleepy too. She was shivering at bedtime, which is usually a sign she is about to spike a fever, so I am back on fever watch. It goes without saying, but Peanut getting sick is NOT a good thing. So we met with her new Immunologist, and she is great. She sent her for a wack load of blood work, to which they refused to take it from her port. She has it for a reason, USE IT. They claimed that no one on that floor knew how to draw it, so they would have to get a Dr's order to have it done (uhh, no you don't), and that it would take over an hour to have another nurse do it. Umm, she just had surgery in that hospital 3 weeks ago, I know none of that is the case. But I was too tired (i'm getting sick too right now), to fight about it. Peanut was also quite calm about it all, so I didn't push it. Peanut did great though, didn't cry or let out even a peep when they poked her. I was SO proud of her. So they were very happy we were referred and they are quite concerned about her history of infections as well as the family history of infections (more so me with my pregnancies - apparently there can be a correlation). We have to go back in a month, when they'll have all the results and we'll go from there. I would assume as well, that they'll go over possible plan of action for her. They are going to do a challenge test on her immune system when we go back as well. They want to give her a booster from one of her imunizations, draw some blood and then re-draw it 6 weeks later. They want to see how her body reacts to the immunization. So more waiting (as usual ), but at least the ball is rolling.

Its been a hard week in general for me. I got our package from our Wish co-ordinator, its a ton of forms to sign (no big deal). There are medical forms for her Dr to sign (they've already talked to her on the phone from when she was referred but she has to sign some stuff too), liability forms, information releases, publicity authorization, as well as OHIP information for the trip insurance. They also needed our shirt sizes as they give the Wish families CWF shirts. All was fine and dandy, but as I read through it, it hit me. I'm reading the forms her Dr needs to sign off on, and it asks the Dr to confirm (again) that she is "high risk and life threatening". What a punch in the gut. Then we FINALLY (which is a whole other story) got the paperwork we needed to sign with regards to the out of Country coverage for her to go to the States for testing. There is a spot where it asks if there is a delay in treatment, would it result in "medically significant irreversible tissue damage", to which he checked off yes. Then it asks how soon treatment is required and he said "within 6 months to avoid XXX (he said a few things) and potential mortality". Another huge punch in the gut. I KNOW my daughter is sick, I KNOW she is very fragile, I KNOW everything. But seeing it there, in bold typed print was incredibly hard. It also makes me angry. Angry that our family has already been through SO much, and now this. Peanut is SO strong, considering everything she has been through and is going through. So I just need to remind myself that if she can remain this brave and strong, then so can I.

Anyways, sorry. I just have a lot on my mind, obviously. I think I overused this smiley tonight, eh? lol!

 

[tinytreasures]

Ohh Kristy I am so sorry. I know seeing it is black and white is so hard and makes is so real. I wish I was there to hold your hand and give you a huge huge hug right now.


As for the dr appointment. For some reason they never take blood out of the port, I don't get it either. Glad she did well.
Praying she gets over the bug she has really fast with no weight loss.

 

[loritemp]

I just popped over to your PTR, I see you in so many other's so had to come read

First and foremost, your family is beautiful!!! What lovely children! Your story has really touched my heart, I don't even have the words to express it. I used to do research at CHOP and many days I wish I still did, for families like you. I sincerely hope you get Peanut to where she needs to be, that they have answers for her and that your family turns a corner. In the meantime, so excited for your plans Love all the stuff you found on Etsy, might need to go peep some of it!!!

 

[Mom2Miracles]

Ohh Kristy I am so sorry. I know seeing it is black and white is so hard and makes is so real. I wish I was there to hold your hand and give you a huge huge hug right now.

As for the dr appointment. For some reason they never take blood out of the port, I don't get it either. Glad she did well.
Praying she gets over the bug she has really fast with no weight loss.

Thank you, your support means a lot - even from afar.

As for the port, they have ALWAYS taken blood from it. Since she had it placed in September 2010, they haven't pricked her peripherally at all, this was the first time. So its quite frustrating that a nurse in a CHILDREN'S hospital put up stuch a stink and issue about it. Especially when what she was saying was not true. Something we know from past experience. Definitely frustrating.

I just popped over to your PTR, I see you in so many other's so had to come read

First and foremost, your family is beautiful!!! What lovely children! Your story has really touched my heart, I don't even have the words to express it. I used to do research at CHOP and many days I wish I still did, for families like you. I sincerely hope you get Peanut to where she needs to be, that they have answers for her and that your family turns a corner. In the meantime, so excited for your plans Love all the stuff you found on Etsy, might need to go peep some of it!!!

Hi Lori, thank you visiting. Thank you for the compliments on my family. CHOP - Children's Hospital of Philly? Thats where they were originally going to send Peanut, but then changed it to Nationwide in Columbus Ohio. Wow, a research job. Amazing, I think anyone who works in that field has a huge heart. You are working to find a cure for MY daughter, and so many other peoples kids (and family members). Amazing. LOL about Etsy, I need to stay off of there. I went to peek a bit again last night. ha!

So today I had to take the kids to the Paed. Monkey is STILL sick. He was healthy for 1 week out of the last 6 weeks, its been awful. So he is on a new inhaler (in addition to the one he was already on), and 2 antibiotics (one being a steroid). Peanut is also quite sick, and getting sicker. She likes to remind us that "Monkey gave her a bad cough", lol!! So she is now on 2 antibiotics. My poor babes, I hate seeing them so sick. Hopefully the meds kick in soon and they are both to their old selves soon. It looks like Monkey was trying to get better, as he got me sick. So I am feeling awful. Booooo...Spring cannot come soon enough.

Peanuts Paed also rolled her weekly appt (which was supposed to be tomorrow morning), in to todays appt. So yay, we don't have to go in the morning. Though we will have to have a phone appt with her Dietician, which is totally fine. She is down some weight, again. Obiously, not good to say the least. There are some plans in the works, so we'll have to see how they unfold.

As for Disney stuff, I need a few thoughts. Peanut doesn't really eat orally, she is fed through a gj-tube - its her sole source of nutrition. She is allowed to eat tiny tiny amounts of fruit at a time, and I mean tiny. And even then, she doesn't eat every day. She has gone weeks before with eathing nothing. We wanted to book a Character meal or two, knowing the kids would LOVE it. I wanted to book Cinderella's Royal Table and Chef Mickeys. BUT, I worry how it will affect Peanut. She is good about us eating, she knows we have to, and she knows why she doesn't/can't. Of course, its not always easy but most of the time things are okay. She has told us that it doesn't bother her when we eat in front of her (which we try to avoid doing, we even try to keep her busy when Monkey is eating but its not always possible to keep her out of sight), but that it really bothers her that Monkey eats in front of her. We've only been to a restaurant once since the no oral eating began back in October (for a family thing), and she did fine. She got to have a sucker (a little treat she loves - which is rare), and she played on the iPod. Do you think it would be cruel of us to book a Character meal or two? I was thinking 2 because Cinderella's Castle would be more for her, and Chef Mickey's would be more for Monkey. Is there enough going on with the Characters at these meals, that she would/could be interacting with them, or be able to watch them interact with others? Also, if we were to book, how do I book? There would be 4 of us there, but only 3 of us eating. And I know they ask how many in the group when booking. Oh and, where are they? What park day, should we book them in conjunction with (like a day we are at MK or Epocot, etc)? They would be for breakfast (preferred) or lunch, if that helps.

 

[blessedmom4]

I am very tired tonight; however, I wanted to make sure you knew I AM here reading and praying so very hard for everything!

 

[Mom2Miracles]

I am very tired tonight; however, I wanted to make sure you knew I AM here reading and praying so very hard for everything!

I know you are, thanks Bella. Get some rest tonight. Lots of
PS. Love the pictures, they always make me smile.

 

[blessedmom4]

Kristy,

I have been thinking about you all day and praying that you are feeling MUCH better. Sometimes it is HARD to find that optimistic spark to ease our fears...I hope you are able to get lost in your Disney plans.

I am going to *ATTEMPT* to answer some of your questions...please keep in mind I am NOT an expert about this, just gleaned some thoughts from reading these boards the past few years.

I think Peanut will enjoy the character meals better than ANYBODY else because she will not care about eating! One of my "issues" with the meals is we pay SO MUCH MONEY for these meals and the children are so busy they don't WANT to eat! Rachel had a half a doughnut and two sips of milk when we went to Chef Mickey and she was charged the full adult meal prce...made me so It really was busy for my taste...the good news was we were the last seating of the morning so we stayed as long as we wanted/needed. As far as Peanut not eating anything...From reading on the disability thread, they will charge the full fee for the meal...this is for the entertainment factor...HOWEVER, some patrons have been successful asking for a manager and pointing out the person who is unable to eat and they will take that charge off of the bill...I would think on a wish trip this might definitely be the case!

You might want to post on the Wish Trippers Thread for more responses. I hope you are ALL feeling better at your house soon!

 

[blessedmom4]

Chef Mickey is at the Contemporary, near MK...so it will not matter which park you are at. For CRT, you will have to go into MK, so you will need to use a ticket. I HTH!

 

[teresajoy]

Kristy, I just wanted to let you know I was thinking of you, and I wish I could give you a real one, but this will have to do


Many years ago, wow, Arminda was turning 3, so 10 years ago, they let my Dad pay a reduced price at Chef Mickey's because he didn't want to eat there. They called it an entertainment fee. You could ask about that.

I also agree that the biggest problem with character meals is trying to eat! So, Peanut might be just fine with it. My favorite character meal is 1900 Park Fare with the stepsisters. They are HILLARIOUS!!! And, the food is great!

 

[tinytreasures]

good morning!!!!

 

[Mom2Miracles]

Kristy,

I have been thinking about you all day and praying that you are feeling MUCH better. Sometimes it is HARD to find that optimistic spark to ease our fears...I hope you are able to get lost in your Disney plans.

I am going to *ATTEMPT* to answer some of your questions...please keep in mind I am NOT an expert about this, just gleaned some thoughts from reading these boards the past few years.

I think Peanut will enjoy the character meals better than ANYBODY else because she will not care about eating! One of my "issues" with the meals is we pay SO MUCH MONEY for these meals and the children are so busy they don't WANT to eat! Rachel had a half a doughnut and two sips of milk when we went to Chef Mickey and she was charged the full adult meal prce...made me so It really was busy for my taste...the good news was we were the last seating of the morning so we stayed as long as we wanted/needed. As far as Peanut not eating anything...From reading on the disability thread, they will charge the full fee for the meal...this is for the entertainment factor...HOWEVER, some patrons have been successful asking for a manager and pointing out the person who is unable to eat and they will take that charge off of the bill...I would think on a wish trip this might definitely be the case!

You might want to post on the Wish Trippers Thread for more responses. I hope you are ALL feeling better at your house soon!

Its good to know that she probably won't feel left out, with so much going on. Maybe I will call with regards to the costs. I don't think its right to have to pay full price, when she will eat or drink, nothing. BUT, I get maybe a fee for the entertainment factor. I did post in the Wish Trippers thread asking for others to pop over and read my post and offer some advice/suggestions. No one did though. Love the pooh picture, I just love Piglet. He's just so cute. lol!

Chef Mickey is at the Contemporary, near MK...so it will not matter which park you are at. For CRT, you will have to go into MK, so you will need to use a ticket. I HTH!

Thanks, good to know. I need to sit down and try and get a plan in place for what we want to do on which days.

Kristy, I just wanted to let you know I was thinking of you, and I wish I could give you a real one, but this will have to do

Many years ago, wow, Arminda was turning 3, so 10 years ago, they let my Dad pay a reduced price at Chef Mickey's because he didn't want to eat there. They called it an entertainment fee. You could ask about that.

I also agree that the biggest problem with character meals is trying to eat! So, Peanut might be just fine with it. My favorite character meal is 1900 Park Fare with the stepsisters. They are HILLARIOUS!!! And, the food is great!

Thanks for the hugs, it means a lot. I think I will call the restaurants we are thinking of going to, and ask about the entertainment fee and explain the situation. I'll check out 1900 Park Fare though (its nice to hear such a good review), since it looks like Cinderella's Castle is completely booked, for EVERY DAY of our stay for breakfast and lunch. Actually, so is Chef Mickeys, unles we want to be there for 7am.

good morning!!!!

HELLO! I hope you are having a nice weekend!

 

[loritemp]

Just checking in and saying hi

Years ago I took my goddaughter and her sisters to Auskerhaus for a Princess breakfast. It was fabulous!! It is a family style meal, they server the table with large plates of food. The food was really good, the place is a perfect setting for a Princess meal. And this might be silly but since it isn't a buffet it mightbe better. What I mean is no one will have to get up and leave the table for food, it might be a better option than having everyone take turns leaving the table, ya know? And I agree with the other ladies, the girls were too excited to even know there was food on the table!!!!

Sending healthy vibes your way

 

[Mom2Miracles]

Just checking in and saying hi

Years ago I took my goddaughter and her sisters to Auskerhaus for a Princess breakfast. It was fabulous!! It is a family style meal, they server the table with large plates of food. The food was really good, the place is a perfect setting for a Princess meal. And this might be silly but since it isn't a buffet it mightbe better. What I mean is no one will have to get up and leave the table for food, it might be a better option than having everyone take turns leaving the table, ya know? And I agree with the other ladies, the girls were too excited to even know there was food on the table!!!!

Sending healthy vibes your way

Hi Lori! I'll look in to Akershus as well, thanks for the tip. I didn't realize the other places were buffet meals. And thanks for the healthy vibes, we need it. The kids are still quite sick, and i'm feeling even worse. Peanut is still spiking fevers too, ugh.