~How TWO trips became...who knows? ~ It's a TRIP! and an upgrade.... 4/22

[pipersmom]

Hooray for 14 days!! The shirts look awesome, Maroo! I haven't decided whether to try my hand at tie-dye Mickey head shirts yet, I may have to! Piper says to tell you "hello" as she read over my shoulder..lol. I def think Jordan needs a "Grumpy" shirt..do I get a vote?

 

[jordanyosh]

Hooray for 14 days!! The shirts look awesome, Maroo! I haven't decided whether to try my hand at tie-dye Mickey head shirts yet, I may have to! Piper says to tell you "hello" as she read over my shoulder..lol. I def think Jordan needs a "Grumpy" shirt..do I get a vote?

HA!

I say go for it on the tie dye.

 

[All7OfUs]

Hi ALL!

Maroo just skyped me and asked me to post that Rachel is quite ill again- possibly with pneumonia! She will have a chest X-Ray in the morning. I guess she's been on antibiotics for some time, but that they haven't helped.

I know you are all aware that maroo, Rachel, her mom and a whole bunch of other people are supposed to leave for their trip in less than 2 weeks!!!

Please, please pray for Rachel, if you think about it.

Liesa

 

[maroo]

This is about the DECEMBER trip - which is coming up VERY SOON! We are just days away!!

Houston...we have a problem.

Less than 6 days to go and we have a problem.

Here is the deal...

For those of you guys just hoping on board...

This is very likely Rachel's last trip...maybe anywhere, but certainly to Disney. Her heart and lungs are not doing well at all. Her prognosis is very poor overall. She is also a "Do Not Intubate"...so if something happened and she got sick (even just the flu or pneumonia), she could die simply because they do not want to do any heroic measures to prolong her life. (Rachel made this decision because she does not want to live on a vent again.)

She has been doing extremely well over the past few months...so much so that I have gotten to know a "new" Rachel - she is happier and has more energy - and the hope is that she sort of turned a corner and really is doing much better overall and maybe the grim outlook they had for her is just not accurate. They even looked into her starting school again.

Which brings us to today...

The last two weeks have been hard on her. She is sick again, her heart and lung levels are continuing to decline. She is forgetful, tired and having siezures again. And last night she started to act like she did right before she went into the hospital this summer - she didn't know what year it was.

Her Mom REALLY wants her to have this trip. To go with her whole family. To have a really good time in Disney. This is basically her Wish Trip. (She never was granted a Wish - her family had the means to travel anywhere and they did not feel comfortable having her get a free trip, etc - but in hindsight really wish they had - since a Wish Trip is something you really can't buy with money - and you can always donate to the wish organization and grant many more wishes.)

Rachel went on a special trip for her 21st birthday, but she was sick at the time and starting her decline that landed her in the hospital. She doesn't even remember the trip.

Her Mom doesn't want to take her to Disney if she is going to be miserable and not even remember it.

She is calling the doctors today and hopefully they can get together and decide what the best course of action is. Hopefully this is something easy. Her last decline was due to her sodium levels...plain salt. All they had to do was correct her levels and she was back to "normal" - even better than normal - we got Rachel back! So hopefully this is something that easy. Hopefully they won't have to admit her in the hospital and can figure out what is wrong and correct it as an outpatient.

Our goal is to decide by tomorrow...since that is the last day to cancel the room reservation without losing a bunch of money.

Pray for us - that we make a wise decision that is best for everyone - especially Rachel!

 

[pipersmom]

Praying, Maroo..I can't imagine having to try to make that type of decision so last minute.. for all of you!

 

[VroomVroomLightning]

I am sorry to hear about Rachel.I will keep Rachel her family and you in my prayers.

 

[maroo]

I MUST steal that t-shirt idea next time we take G-pa to Disney!

You are welcome to it!

Let me know and I will send you the full size version!!

Hooray for 14 days!! The shirts look awesome, Maroo! I haven't decided whether to try my hand at tie-dye Mickey head shirts yet, I may have to! Piper says to tell you "hello" as she read over my shoulder..lol. I def think Jordan needs a "Grumpy" shirt..do I get a vote?

You should so try the tie-dye Mickey shirts! (And if you fail - you can always order them from my friend...but you will have to email me for the information - as I don't think I can share it on the DIS!)

Tell Piper I said Hello, too!!

HA!

I say go for it on the tie dye.

And you totally need a Grumpy shirt!

Hi ALL!

Maroo just skyped me and asked me to post that Rachel is quite ill again- possibly with pneumonia! She will have a chest X-Ray in the morning. I guess she's been on antibiotics for some time, but that they haven't helped.

I know you are all aware that maroo, Rachel, her mom and a whole bunch of other people are supposed to leave for their trip in less than 2 weeks!!!

Please, please pray for Rachel, if you think about it.

Liesa

Liesa - thank you for posting this!!! Thankfully, she did not have Pneumonia! Ellie, however, is just getting over it!

Praying, Maroo..I can't imagine having to try to make that type of decision so last minute.. for all of you!

Thank you! It really stinks! Definitely puts a damper on all of the excitement!

 

[maroo]

I am sorry to hear about Rachel.I will keep Rachel her family and you in my prayers.

Thank you!

 

[kdzbear]

Maroo,

I saw your prayer request last night, but my internet crashed before I could reply. We are praying for Rachel. I hope that she will be able to go on this trip. I know how much it would mean for her mom and I hope Rachel is well enough to enjoy it. We will keep praying.

 

[Sandy321]

I'm at work - kids coming in 3 minutes -

but I want you to know that Rachel has also been in my heart and I have listed her in prayer chains - we are all lifting her up in prayer.... it gives me goosebumps to read and know what you all must be doing in group hugs, and where your hearts and thoughts are.... none of you are alone - you are surrounded by internet friends some you've not met.... and you are surrounded by the love of our Father in Heaven, may He continue to grant you the peace that is needed, the doctors with discernment as they look for her course of treatment...

and just think, in Houston they had snow!

 

[maroo]

Update:

Rachel is on her way to the hospital to get blood work. They hope to have a seizure medicine level today and may also check her sodium (but that was my request, not the doctors) ...

They also said that the rest of her bloodwork would be coming back on Friday...so they should know even more by then.

So...we are in holding. I assume...if her level is off...that she can just raise her medicine and we would not have to cancel and we would have a reason for the seizures? But if the level is fine - that would be more worrisome.

 

[maroo]

Maroo,

I saw your prayer request last night, but my internet crashed before I could reply. We are praying for Rachel. I hope that she will be able to go on this trip. I know how much it would mean for her mom and I hope Rachel is well enough to enjoy it. We will keep praying.

Thank you!!! I really appreciate you guys praying - so much!!

I'm at work - kids coming in 3 minutes -

but I want you to know that Rachel has also been in my heart and I have listed her in prayer chains - we are all lifting her up in prayer.... it gives me goosebumps to read and know what you all must be doing in group hugs, and where your hearts and thoughts are.... none of you are alone - you are surrounded by internet friends some you've not met.... and you are surrounded by the love of our Father in Heaven, may He continue to grant you the peace that is needed, the doctors with discernment as they look for her course of treatment...

and just think, in Houston they had snow!

Thank you!

I know!! WE had snow, too! Which is very rare for Mississippi! It was beautiful! (and Rachel LOVED it!)

 

[that's nice]

Can you contact WDW and see if they can make an exception if you had to cancel on Friday or Saturday? Maybe you can reach someone that would be willing to work with you guys. I'm not sure but its worth a shot!

 

[maroo]

Can you contact WDW and see if they can make an exception if you had to cancel on Friday or Saturday? Maybe you can reach someone that would be willing to work with you guys. I'm not sure but its worth a shot!

I called them yesterday and they wanted to know if I had insurance...

I did not buy insurance because it was a room only ressie...I figured we would know within 5 days...and this was the main reason that we did not do a "package" that would include dining...the cost difference was minimal - and when you threw in the insurance - it was more cost effective to do the room only and just pay out of pocket for our food.

I would hope Disney would help them out...but would not expect it.

We would be out our MVMCP tickets either way, I believe.

And I don't really know what we would do if Rachel doesn't go....My hunch is that Ellie and her family would still go? But not the 4 of us? No idea?

I am hoping they can get this fixed or patched so we can go. That is my hope. My gut says we will go...?? But just not sure what our schedule will need to be?? We may need to delay a day? Or even have me drive the van and have them come Tuesday by plane? And we will probably need to take it easy...the more tired she gets, the worse her seizures get.

 

[that's nice]

I hope they get some answers so you can make the right decision tomorrow. I hope they are good answers.

 

[All7OfUs]

Ra has been on my mind all day. Really hoping that this is a simple fix or adjustment.

I would be sad if Ellie didn't go, but glad they didn't tell her yet. What a disappointment that would be. We'll keep praying!

 

[maroo]

I believe we have turned the corner!

Joyce said this morning "When we are in Disney!"

Woo Hoo!!

So, they have gone up on her seizure medicine and she did not have one yesterday, so that is good.

We are still waiting on her sodium levels. Maybe if they are a little off, they could correct that before we go, too.

 

[maroo]

I hope they get some answers so you can make the right decision tomorrow. I hope they are good answers.

Thank you! I think we got good answers!!!! Looks like we are GOING!!!!!!

Ra has been on my mind all day. Really hoping that this is a simple fix or adjustment.

I would be sad if Ellie didn't go, but glad they didn't tell her yet. What a disappointment that would be. We'll keep praying!

Thank you so much for thinking about her and praying for her!

Ellie would be sad...but since she doesn't know she is going - and won't know until she is on the plane - she would not really know the difference!

I am glad they waited...they had several reasons...not the least of which was the possibility that they would not be able to go if Ra got sick...so they were smart to plan that way.

And I am sure it cuts down on the CRAZY Ellie they would have if she knew.

She has been on steriods this past week because of her pneumonia and has been BOUNCING off the walls!!! I can't imagine how crazy it would be if she knew she was going to Disney!

Hopefully someday they can plan a trip and let her anticipate it!

 

[pipersmom]

Awesome news! So glad it looks like the trip is still on. Continuing to keep you guys in our thoughts!

 

[Sandy321]

Update:

Rachel is on her way to the hospital to get blood work. They hope to have a seizure medicine level today and may also check her sodium (but that was my request, not the doctors) ...

They also said that the rest of her bloodwork would be coming back on Friday...so they should know even more by then.

So...we are in holding. I assume...if her level is off...that she can just raise her medicine and we would not have to cancel and we would have a reason for the seizures? But if the level is fine - that would be more worrisome.

continued prayers!!

I know our friend's child has the sodium level issues as well - so I just continue to pray for healing, miracles, pixiedust - and ALL ELSE!!

Peace to all!!