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

[blessedmom4]

Thinking back, our Dr did need to fill out additional paperwork right before we went. We never touched or saw anything that the Dr took care of. MAW sent everything to the Hem/Onc clinic and the nurses passed it along or filled out what they needed. One of the nurses was the liason for those type things. She takes care of the Victory Junction Camp.

Okay, your location says Virginia, but that sounds JUST like our docs/nurses, hem/onc, VJGC and all...Have your children been to Victory Junction? (Sorry Kristy, now I am highjacking YOUR thread).

 

[4monkeys]

Okay, your location says Virginia, but that sounds JUST like our docs/nurses, hem/onc, VJGC and all...Have your children been to Victory Junction? (Sorry Kristy, now I am highjacking YOUR thread).

We are in Virginia, Virginia beach. Allison went last year to VJGC and we are about to apply again!! Have your kids gone?

 

[blessedmom4]

We are in Virginia, Virginia beach. Allison went last year to VJGC and we are about to apply again!! Have your kids gone?

The BEACH...LUCKY (I actually now think I remember reading that in your TR..I am so tired tonight, I NEED to go to bed). David has been twice, hoping he gets to go once more (He ages out this year). We registered him about 5 weeks ago. He does Neuro week. Rachel went to sibling camp once, although now she would qualify for Lung week. Of course, Lisa qualifies for Heart week...I am not ready to let her go yet (Maybe next year Heart/Lung week us held at the same time). We were fortunate to do a family overnight last year...it was a BLAST! We also did the Christmas parties, when they had them (they have not been held the past 2 years, due to money). They did have a gala in Charlotte at Christmas that Pete, Christian, David and Lisa went to. Rachel was in the hospital. David said it was the best party he had ever been to...and it was the first time anything like that had EVER been held in Charlotte for sick children.

 

[tinytreasures]

hugs for getting weight on
don't stress about it enjoy this time right now.
500 grams is huge it would have taken Avy at least 6 months to put that on if not a yr.

We had to have the dr sign off right before out trip to be able to go

 

[Mom2Miracles]

Yes, One in Downtown Disney and One in Magic Kingdom. I am so excited for each detail of your plans!!!

Me too!! Its a little overwhelming, but its exciting!

Thinking back, our Dr did need to fill out additional paperwork right before we went. We never touched or saw anything that the Dr took care of. MAW sent everything to the Hem/Onc clinic and the nurses passed it along or filled out what they needed. One of the nurses was the liason for those type things. She takes care of the Victory Junction Camp.

Our wish isn't through MAW, its through Children's Wish Foundation (which is Canadian - but the same thing as MAW). So its possible that the way the paperwork is handled is different. Our Paed did mention needing to fill stuff out, so its possible she was meaning paperwork for the trip, or even med stuff for the plane (as precautionary measures). Our Paed is great, and she never has an issue with filling out paperwork or taking care of her kids. I think Peanut has a soft spot in her heart, so she seems to go that extra step. When I brought up the trip to her (we wanted to make sure she thought it was safer to go sooner then later), her face just lit up. It was great, she was just SO happy for her.

Okay, your location says Virginia, but that sounds JUST like our docs/nurses, hem/onc, VJGC and all...Have your children been to Victory Junction? (Sorry Kristy, now I am highjacking YOUR thread).

Meh, no worries. The more the merrier. I can be boring at times.

hugs for getting weight on
don't stress about it enjoy this time right now.
500 grams is huge it would have taken Avy at least 6 months to put that on if not a yr.

We had to have the dr sign off right before out trip to be able to go

Thanks hun! She was supposed to have her weekly appt this morning, but I spent half the night in the ER with our son as he was fighting a bad case of Croup. So by the time we got home after 830am, we had already missed her appt. Its nice not to see that # on the scale this week (its just so stressful), but they still might want to see her this afternoon. I have to call in a few minutes, good thing they know our family and know that missing an appt is NOT normal for us.

 

[blessedmom4]

Me too!! Its a little overwhelming, but its exciting!

That is certain!

Meh, no worries. The more the merrier. I can be boring at times.

You...BORING???? HARDLY, I love you and your sweet family!

 

[Tinkergurl20]

Hi, I just found your PTR...and am loving hearing about your upcoming trip! Although I am much older than your DD, I understand the whole thing about not knowing the exact diagnosis of your particular disease. I have been diagnosed with a rare digestive disorder, and my rheumatologist is convinced I have some form of Inflammatory Arthritis but she just can't figure out what it is, so we have been trying one medication after another. On the digestive front, we found a specialist in Ohio that is involved in heavy research/treatment, only 5 clinics for this disease exist in the US.
So believe me I understand the frustration and difficulties that go along with this unique problem...I hope you get some answers and have a blast in Disney, we are going to WDW in July!!

 

[Mom2Miracles]

You...BORING???? HARDLY, I love you and your sweet family!

Awe, thank you!

Hi, I just found your PTR...and am loving hearing about your upcoming trip! Although I am much older than your DD, I understand the whole thing about not knowing the exact diagnosis of your particular disease. I have been diagnosed with a rare digestive disorder, and my rheumatologist is convinced I have some form of Inflammatory Arthritis but she just can't figure out what it is, so we have been trying one medication after another. On the digestive front, we found a specialist in Ohio that is involved in heavy research/treatment, only 5 clinics for this disease exist in the US.
So believe me I understand the frustration and difficulties that go along with this unique problem...I hope you get some answers and have a blast in Disney, we are going to WDW in July!!

Hello, thanks for stopping by. I'm sorry you are stuck in limbo with a health diagnosis. I hope your Drs can get you the help you need, and possibly a dianosis in the near future.

I think I want to try and find a Cinderalla dress for Peanut, but the pink dress that the mice made for her before the wicked step sisters ruined it. She LOVES that dress, and I think it would be cute to wear to Cinderella's Castle. I don't think we'll be able to pull off going the day we go to BBB (since we can't get the times we want), so I think this would be a good solution. I'll have to take a peak on Etsy to see what I can find.

 

[tinytreasures]

Thanks hun! She was supposed to have her weekly appt this morning, but I spent half the night in the ER with our son as he was fighting a bad case of Croup. So by the time we got home after 830am, we had already missed her appt. Its nice not to see that # on the scale this week (its just so stressful), but they still might want to see her this afternoon. I have to call in a few minutes, good thing they know our family and know that missing an appt is NOT normal for us.

I hated our weekly weight ins. She had to do naked checks till she was 3.5 and just undies till she was over 5yrs old.
So sorry your son is sick

 

[Mom2Miracles]

I hated our weekly weight ins. She had to do naked checks till she was 3.5 and just undies till she was over 5yrs old.
So sorry your son is sick

Thanks, poor Monkey is so sick now. Hes been spiking fevers for almost 24 hours now, and once the meds wear off he begins to spike again. He has a horrible cough from his chest, and is just so sad looking. I hate this.

We've been doing weekly weigh-ins for over a year now. We had done them weekly for about 6 months when she was a baby, and then it moved to monthly which was heaven. For a brief period we went to every 3 months but I think that only lasted for 2 appts. Its hard not to stress and worry, but well as a parent you always do. Its just a different kind of parent stress with your child who is "sick". We just look at her and its hard not to feel sick. She is so utterly tiny, I can see every.single.bone in her body. I worry that we'll put her to bed one night, and she won't wake up because her body is going to give out on her. Its such a different stress and worry. Anyways, enough rambling.

So I was thinking about Cinderella's Castle. Since we can't get in on the day she goes to BBB for the time we want, I was thinking of booking a breakfast there another day and getting her a Cinderella dress. She LOVES Cindy's pink one that the mice made her (the one the wicked step sisters ruined), so it might be cute to get that and have her wear it to the castle. I'm sure she'll pick the blue Cinderella dress at BBB, so it would be cute to get something different. I'll have to start searching on Etsy - love that website.

 

[tinytreasures]

Thanks, poor Monkey is so sick now. Hes been spiking fevers for almost 24 hours now, and once the meds wear off he begins to spike again. He has a horrible cough from his chest, and is just so sad looking. I hate this.

We've been doing weekly weigh-ins for over a year now. We had done them weekly for about 6 months when she was a baby, and then it moved to monthly which was heaven. For a brief period we went to every 3 months but I think that only lasted for 2 appts. Its hard not to stress and worry, but well as a parent you always do. Its just a different kind of parent stress with your child who is "sick". We just look at her and its hard not to feel sick. She is so utterly tiny, I can see every.single.bone in her body. I worry that we'll put her to bed one night, and she won't wake up because her body is going to give out on her. Its such a different stress and worry. Anyways, enough rambling.

So I was thinking about Cinderella's Castle. Since we can't get in on the day she goes to BBB for the time we want, I was thinking of booking a breakfast there another day and getting her a Cinderella dress. She LOVES Cindy's pink one that the mice made her (the one the wicked step sisters ruined), so it might be cute to get that and have her wear it to the castle. I'm sure she'll pick the blue Cinderella dress at BBB, so it would be cute to get something different. I'll have to start searching on Etsy - love that website.

I get the weigh in stuff. I hated it too. Avy wore size 12/18 months in preschool she was so little. She is finally putting on weight this yr. All of a sudden she is growing and out of FTT.

I hope you can find the pink dress that is Ella's favorite too

found one
http://www.etsy.com/listing/6801669...e=2&ga_search_type=handmade&ga_facet=handmade

 

[Mom2Miracles]

I get the weigh in stuff. I hated it too. Avy wore size 12/18 months in preschool she was so little. She is finally putting on weight this yr. All of a sudden she is growing and out of FTT.

I hope you can find the pink dress that is Ella's favorite too

found one
http://www.etsy.com/listing/6801669...e=2&ga_search_type=handmade&ga_facet=handmade

What great news that she is doing so well. It must be such a relief.

Isn't that dress too cute? I saw it earlier yesterday.

 

[Mom2Miracles]

So i've been browsing Etsy, I just love that site. How do you not just buy everything? Look at this stuff, amazing!!!

I love that they can match - I want to try and find them embroidered though.

Are these not too cute?

Love matching hair bows, lol.

This entire set is just SO cute, ack. I think my husband would kill me for spending 85$ on it, and well I would probably have a heart attack. lol!

And Monkey could match

Beautiful...WOW!!

I loooove these appliques. Monkey loves Toy Story, and Peanut would love Cindy Minnie, Flying Tink Minnie and Snow White Minnie

Pink Cindy

These are too cute!

And Peanut could match

More Matchy Matchy

Love these, sans names and a must, Thing 1 & Thing 2 for each of them

 

[tinytreasures]

you will go broke if you keep looking at all that cute stuff

 

[Mom2Miracles]

you will go broke if you keep looking at all that cute stuff

Thats why i'm just looking, NOT buying.

 

[blessedmom4]

Thats why i'm just looking, NOT buying.

It's fun to WISH (and drool! Gorgeous stuff)!

 

[tinytreasures]

Thats why i'm just looking, NOT buying.

I was "looking" yesterday too but now have a big list
I did find my MIL her mothers day gift

 

[Mom2Miracles]

It's fun to WISH (and drool! Gorgeous stuff)!

Isn't it though? I need to block Etsy from my laptop. lol!

I was "looking" yesterday too but now have a big list

Looking is dangerous, didn't you learn anything from me yesterday?lol!

Sooo, I just got a call from the Immunologists office and they can see Peanut tomorrow. Her GI Specialist put in a referral for her when we saw him a few weeks ago. Normally they call to book the appt for within a few weeks, so I was quite surprised that they can see her tomorrow. Its great that its tomorrow, its just hard because the appt 2 hours away. Wish us luck, I feel quite nervous right now, not sure why. I just have that feeling in the pit of my stomach.

 

[tinytreasures]

Isn't it though? I need to block Etsy from my laptop. lol!



Looking is dangerous, didn't you learn anything from me yesterday?lol!

Yes you taught me to look but keep the CC in my purse

Sooo, I just got a call from the Immunologists office and they can see Peanut tomorrow. Her GI Specialist put in a referral for her when we saw him a few weeks ago. Normally they call to book the appt for within a few weeks, so I was quite surprised that they can see her tomorrow. Its great that its tomorrow, its just hard because the appt 2 hours away. Wish us luck, I feel quite nervous right now, not sure why. I just have that feeling in the pit of my stomach.

I hate have a love hate thing going on with my (kids) Immunologist. He has been a answer to our prayers for both of my boys but I agree I hate driving the hour and half each way to see him. Good luck tomorrow.

 

[Mom2Miracles]

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.