Hi Ho Hi Ho it is off to Disney we go!

[jwallaceent]

I hope they can get her levels correct. My son Kaleb is on prograf, he's waivered some but I think we have it set. He is still on weekly draws through May....that fear of rejection sure sits in the back of our minds all of the time.... Take care

They are happy with her labs this week and they are actually giving us a whole month off! That trip to DC is not fun! We leave at 4:30am to beat the traffic and arrive at Georgetown by 6:30am!!

That rejection in the back of your mind lurks and can be very scarey! We try so hard to take each day one at a time and enjoy life to the fullest!

I wish your son the best too! I so get what you feel! It is nice when someone understands and gets what we live each day! Thanks for checking in!

 

[jwallaceent]

Hoping Brooke is feeling GREAT!

OH MY GOSH! How Sweet! Thank you! Prayers paid off and Brooke gets a month off from her labs! Thank you so much!

 

[jwallaceent]

Keeping Brooke in my thought and prayers.

Thank you, rejection is a scarey thing and you never know what tomorrow has in store...the prayers paid off and God is good! Her labs made the doctor very happy and he is giving us a month off! YAY!!!

 

[blessedmom4]

OH MY GOSH! How Sweet! Thank you! Prayers paid off and Brooke gets a month off from her labs! Thank you so much!

Praising God for His Goodness!!!

 

[Mom2Miracles]

What great news, i'm so happy the results improved and she gets some time off from travelling and being poked. YAY!!!

 

[blessedmom4]

You Deserve It!!!

 

[blessedmom4]

I hope Brooke is doing well!

 

[brookerene]

Hope things are going well

 

[blessedmom4]

 

[blessedmom4]

Would LOVE an update....

 

[jwallaceent]

AWWW Thank you soooo much for the messages...I have been absent trying to get Brooke's birthday out of the way. She turned three on Sunday!

I am back to "DISANEE" plan mode! With three weeks to go I have a lot to get ready!!

 

[jwallaceent]

Hello all...I have been absent for some time as Brooke's third birthday was Sunday!! I was so busy with that and planning that I put Disney on the back burner....or as Brooke says..DISANEE!!

Yesterday we went to DC for labs and her liver is very happy! After leaving the lab we went to the pediatrician. She was not herself on Sunday took a 3 hour nap and very congested! Pediatrician said it was viral but gave antibiotics to give her a boost. They wanted to give steroids but transplant team said absolutley NO! Thank goodness I always call them with the plan from pediatrician before I go forward! This would have immuno-suppressed her even more and her EBV(virus that can cause lymphoma to transplant patients and hers has been elevated lately) would have went CRAZY!! I really love my transplant team and they are there for me at the drop of a hat!

With that all taken care of I did do a little shopping and Miss Brooke is pretty much packed and ready to go! As for the other four of us...hahahahaha. We have three weeks and I will do a little each day. I did make a shopping list for my other two kids and my dear hubby.

Our Make A Wish volunteer called last night and our send off party is schedule for March 15th! WOW so very exciting and so very close! We are getting super excited!! I do have family that wants to be there for our party and I will buy extra pizza and drinks for them but is this something we can ask? Will they allow me to have my family there?

I am still working on our itinerary and hope to post that tomorrow sometime for input, suggestions and comments! Thanks again for such a wonderful site that has helped calm me and make this so much easier and less stressful!

 

[blessedmom4]

HAPPY BIRTHDAY BROOKE!!!!!

I hope it was fun!!!
(Lisa's is Thursday, so I understand)!

 

[blessedmom4]

Hello all...I have been absent for some time as Brooke's third birthday was Sunday!! I was so busy with that and planning that I put Disney on the back burner....or as Brooke says..DISANEE!!

Yesterday we went to DC for labs and her liver is very happy! After leaving the lab we went to the pediatrician. She was not herself on Sunday took a 3 hour nap and very congested! Pediatrician said it was viral but gave antibiotics to give her a boost. They wanted to give steroids but transplant team said absolutley NO! Thank goodness I always call them with the plan from pediatrician before I go forward! This would have immuno-suppressed her even more and her EBV(virus that can cause lymphoma to transplant patients and hers has been elevated lately) would have went CRAZY!! I really love my transplant team and they are there for me at the drop of a hat!

With that all taken care of I did do a little shopping and Miss Brooke is pretty much packed and ready to go! As for the other four of us...hahahahaha. We have three weeks and I will do a little each day. I did make a shopping list for my other two kids and my dear hubby.

Our Make A Wish volunteer called last night and our send off party is schedule for March 15th! WOW so very exciting and so very close! We are getting super excited!! I do have family that wants to be there for our party and I will buy extra pizza and drinks for them but is this something we can ask? Will they allow me to have my family there?

I am still working on our itinerary and hope to post that tomorrow sometime for input, suggestions and comments! Thanks again for such a wonderful site that has helped calm me and make this so much easier and less stressful!

Praying Brooke feels better soon and the planning, shopping and packing moves forward without to many difficulties! Glad for the wisdom of the transplant team! THREE WEEKS!!!

 

[brookerene]

With a transplant child you almost have to take everything through them because fam docs don;t always deal with all the meds etc and may not make the most informed choices.... I'm glad they said no. All these transplant meds can lead to lymphoma... a friend from a kidney board whose husband (and child now) had a transplant and now has cancer due to the meds..... so that's scary on top of everything else.! Only 3 weeks...! It's coming up close.... I think it'll be a great time to go and will keep following your PTR!

 

[jwallaceent]

My rough draft itinerary!! I can not believe in 2 weeks and 6 days we are on our very first airplane to DISNEY for the very first time!!!!

Our flight leaves Virginia at 7:00am and we arrive in Orlando at 9:01am!!

Wednesday: March 23rd Arrive in Orlando and GKTW (We have decided this day we are going to hang out at GKTW and aclimate ourselves to the village. One of Brooke's "liver friends" lives two hours away and went to GKTW for her wish trip in December, is going to meet us there and spend the day!!! I have never met this amazing family but she is a part of my support group online and I have stayed in touch!! I am super excited!!!

Thursday: March 24th Epcot and Hollywood Studios Then back to GKTW for the Christmas Celebrations

Friday: March 25th Magic Kingdom

Saturday: March 26th Animal Kingdom

Sunday: March 27th SeaWorld I know this will be Brookie's favorite as her wish was to swim with the dolphins! So we will go to the shows and feed the dolphins I was thinking about making reservations for the Underwater Grill.

Monday: March 28th ?? (Up for suggestions...are the water parks included? Universal Studios is this a full day park or half day?

Tuesday: March 29th We leave this day but our flight does not leave Orlando until 9:00pm We were thinking about going to Daytona International Speedway and beach but still up in the air

Any suggestions and tweeks to this itinerary would be much appreciated and within those parks the MUST SEE/DO I have a 14 year old girl and 11 year old boy and then wish child 3!!! Thank you so much for all the information! You guys have been a BIG help to someone who has NEVER been to DISNEY!!! BUT SO EXCITED!!!!!!!!

 

[mommy2girlswv]

My rough draft itinerary!! I can not believe in 2 weeks and 6 days we are on our very first airplane to DISNEY for the very first time!!!!

Our flight leaves Virginia at 7:00am and we arrive in Orlando at 9:01am!!

Wednesday: March 23rd Arrive in Orlando and GKTW (We have decided this day we are going to hang out at GKTW and aclimate ourselves to the village. One of Brooke's "liver friends" lives two hours away and went to GKTW for her wish trip in December, is going to meet us there and spend the day!!! I have never met this amazing family but she is a part of my support group online and I have stayed in touch!! I am super excited!!!

Thursday: March 24th Epcot and Hollywood Studios Then back to GKTW for the Christmas Celebrations

Friday: March 25th Magic Kingdom

Saturday: March 26th Animal Kingdom

Sunday: March 27th SeaWorld I know this will be Brookie's favorite as her wish was to swim with the dolphins! So we will go to the shows and feed the dolphins I was thinking about making reservations for the Underwater Grill.

Monday: March 28th ?? (Up for suggestions...are the water parks included? Universal Studios is this a full day park or half day?

Tuesday: March 29th We leave this day but our flight does not leave Orlando until 9:00pm We were thinking about going to Daytona International Speedway and beach but still up in the air

Any suggestions and tweeks to this itinerary would be much appreciated and within those parks the MUST SEE/DO I have a 14 year old girl and 11 year old boy and then wish child 3!!! Thank you so much for all the information! You guys have been a BIG help to someone who has NEVER been to DISNEY!!! BUT SO EXCITED!!!!!!!!

This is about the same as my families, but we are thinking after ak closes at 6 go over to Epcot. Universal Studios is two parks and looks like it could take all day. My daughter is also 3 and their isn't much she can do at Universal. I think my daughter fave part will be sea world too. I'm now going to look at Underwater grill, thanks.

 

[HeatherSP]

Better late than never! I am just joining and will be following your trip report closely. I have the same flights as you .... just about a month later and my kids are close to your kids ages. I have a 14 girl, 12 boy, and my wish child is 4 ....... and I also have a 6 and 9 year old too. But like you I am trying to find things everyone can do but also understanding there will be a couple of times we will do things seperately.

 

[PenelopeL]

What beautiful children you have, and what a sweet little girl Brooke is! It's late, but I hope she had a wonderful birthday!! She definitely deserves it after what she's been through. I'm so excited for her to go on her MAW trip, and even more excited that we'll be there at the same time! Mason and I will be keeping our eyes peeled, and we hope to see you there!

 

[jwallaceent]

This is about the same as my families, but we are thinking after ak closes at 6 go over to Epcot. Universal Studios is two parks and looks like it could take all day. My daughter is also 3 and their isn't much she can do at Universal. I think my daughter fave part will be sea world too. I'm now going to look at Underwater grill, thanks.

That is a good idea too! Thank you very much...I just think Brooke would love to see the sealife swimming around while we enjoy lunch/dinner! =) Good luck with your planning!