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

[Sandy321]

continued prayers for all that touch Rachel's life! May she feel the strength from all that surround her, may Rachel, her family and friends feel the peace that we pray surround her - the peace that passes all human understanding - may the great phsycian guide the hands of the physicians around her - hear our prayers as we lift up Rachel to Him -

[that's nice]

I will be saying a prayer that everything turns out alright.

[maroo]

Y'all....


Thank you. :grouphug::grouphug::grouphug: :sad1:

Thank you for praying them. We had a very difficult evening, but with the help of some drugs that finally knocked her out...she is asleep for the first time since Friday. :cloud9:

Praying for a good night of sleep for everyone involved. And hopefully tomorrow will show some improvement to her condition. I promise to keep you guys posted!

[All7OfUs]

Sorry I couldn't encourage you sooner, weekends are just hard to get on the computer, but please know I am hoping things show steady and speedy improvement! The ONE who made her and knows all things, is faithful!

Give us an update soon!!

[StefaniLyn]

PLEASE...guys...

Please pray for Rachel and her Mom, Joyce.

We are at the hospital. Rachel is the one I am going to Disney with in December. She has several medical issues.

In the last two days, Rachel has gone from talking to us (she is completely normal in her intellect and speaking, etc) to now not being able to speak in complete sentences. She is just saying random words and phrases. It is really horrible.

We are now at the hospital and they are running a bunch of tests.

Please, please pray for them.

OMGosh! How scary this must be for all of you, especially Rachel! We will keep her in our prayers and I hope the docs figure out the cause and remedy ASAP.

[MomTo4+more]

Any updates? Thinking of all of you this morning.:flower3:

[maroo]

Quick update...

We had a very long night. She slept for about 2 hours or so. And then was up and very upset, agitated. Her levels have come up, but only a little, which I guess is good news, since she has not gotten any better. The hope is that once the levels are back to normal, we will have Rachel back.

They did finally get her something so that she could relax. She was sleeping when I left for work this morning.

Thank you so much for your prayers!!

[JPFamilyMom]

Good to hear things are looking up, will continue to pray

[Sandy321]

Continued prayers for Rachel, may she feel the strength of the prayers that are lifting her up from around this world!! May she continue to find healing from the medications that are being given to her and may her body continue to find peace - may the Great Physician hear our prayers and give peace and healing to Rachel and her friends and family!

and added prayers for Maroo as she is working and has less sleep, ease her mind and let her feel Your strength, peace and healing powers!!

[kimmylaj]

just popping in to check on rachel. prayers for her healing

[maroo]

Quick Update -

Thank you all for praying!

They think it is her sodium levels, but they have been giving her a sodium drip and her levels went up a little (but not to normal levels) and then down again.

Seems like they are going to need to locate the source of the problem (they have no idea why they are dropping so low) before they can even temporarily fix it.

She is quite confused and agitated as she seems to sort of understand at this point that she is confused. Yesterday we had several hours where she was so out of it, she was just laughing or talking - but now she is really upset.

Please keep praying for Rachel and her Mom!

[eyor44]

We will keep praying for Rachel. :hug:

[TarzansKat]

You're all still in my prayers. :grouphug:

[tinytreasures]

more prayers

[Sandy321]

Maroo - may they continue to find what is best for Rachel!! More prayers for the doctors as they try to pinpoint the source and then let her have the healing - and know the power of prayer!

[maroo]

Thank you all for praying!!! That means so much to us and is probably the only thing keeping us sane.

She is back to where she was. :sad2: We are waiting for the doctors to come in and then I will give an official update of sorts.

[Sandy321]

continued prayers - May God Bless Rachel's team with wisdom as they look for the source and healing for Rachel...open their eyes and guide them in their diagnosis and treatment for Rachel - please restore Rachel's health and strength and keep her faith in you strong! we continue to lift up her friends and family surround them with your peace, You have parted mighty waters and you have promised to open doors when we ask - as we gather around Rachel in spirit - and lift her up in Your care! Hear our prayers!!

[TarzansKat]

continued prayers - May God Bless Rachel's team with wisdom as they look for the source and healing for Rachel...open their eyes and guide them in their diagnosis and treatment for Rachel - please restore Rachel's health and strength and keep her faith in you strong! we continue to lift up her friends and family surround them with your peace, You have parted mighty waters and you have promised to open doors when we ask - as we gather around Rachel in spirit - and lift her up in Your care! Hear our prayers!!

AMEN! :goodvibes

[MomTo4+more]

I am still praying for Rachel and checking for updates. I pray you get wise, compassionate doctors who listen and come up with answers.

[jenb1023]

Thanks for the update! Please let us know as soon as you know more! Sending more prayers, good thoughts and pixie dust!

[maroo]

Ok guys...

Here is the deal. Her sodium is back up - not quite to normal - but up enough for the doctors to decide that now they don't think it is the sodium levels and they - in their words - have "no idea" what is causing this.

A neurologist has been consulted and hopefully will be here soon so they can sort this out.

Obviously this brings us to a place where we have to wonder if this is going to be something they can fix. And that puts her Mom in a really bad place. Please pray for them.

I will keep updating you guys. I am not going to work...at least not yet. They have no power over there anyway...(we are having bad weather and such here)...so I can't do much without a computer (that worked out well, didn't it!)

Please keep praying and I will keep updating!

[jenb1023]

I am so sorry! Please let Rachel's mom know that there are bunches of people out here in cyberspace that are worried and praying with her. I am so glad you are able to be with them to offer your expertise and support!

[Sandy321]

continued prayers - know that the Lord is surrounding Rachel and her friends and family - hold on to His peace - He knows our needs before we do... God is with you!

[Sandy321]

Lifting everyone up in prayer - peace of the Lord... Lord hear our prayers..

[tinytreasures]

http://i3.photobucket.com/albums/y75/5tinytreasures/signs/thPrayers1.gif

[kimmylaj]

aww:grouphug: and prayers

[Sandy321]

:grouphug: Here's hoping and praying you are getting much needed sleep, rest - and peace!

continued prayers for Rachel!

[maroo]

Update - Tuesday #3

We got some balls rolling today to hopefully get things figured out for Rachel.

One of her regular doctors has joined the team and things got moving pretty fast right after that.

The basic update is that they still don't know what is wrong. And she is now requiring a little bit of oxygen, as she was having some trouble breathing and her oxygen saturation levels were low.

We are all pretty concerned...because she does not seem to be getting any better. Her sodium levels are still low, despite days of continuous saline drips.

The plan is to increase the sodium tomorrow if she is still at the same level and they are doing some studies on her kidneys as well.

Please continue to pray...



On another note...
One of our precious Wish Kids....Noah. Is very sick at the hospital in Canada.

Here is his blog for more info...but he is very, very sick. Please also remember his family in your prayers, too. Noah, Mom-Nichole, Dad-Brad, Brother-Joshua and Sister-Kailyn.

http://www.noahgrantjohn.blogspot.com/

[All7OfUs]

Still with you!! I wish they could make some solid determinations of what's wrong, hopefully today!!!

Liesa

[TarzansKat]

Oh gosh, Maroo. :hug: I will keep praying for Rachel, and now Noah as well.

[that's nice]

We will be praying for Noah too.

[Eeyore's-tail-tack]

Update - Tuesday #3

We got some balls rolling today to hopefully get things figured out for Rachel.

One of her regular doctors has joined the team and things got moving pretty fast right after that.

The basic update is that they still don't know what is wrong. And she is now requiring a little bit of oxygen, as she was having some trouble breathing and her oxygen saturation levels were low.

We are all pretty concerned...because she does not seem to be getting any better. Her sodium levels are still low, despite days of continuous saline drips.

The plan is to increase the sodium tomorrow if she is still at the same level and they are doing some studies on her kidneys as well.

Please continue to pray...



On another note...
One of our precious Wish Kids....Noah. Is very sick at the hospital in Canada.

Here is his blog for more info...but he is very, very sick. Please also remember his family in your prayers, too. Noah, Mom-Nichole, Dad-Brad, Brother-Joshua and Sister-Kailyn.

http://www.noahgrantjohn.blogspot.com/

I woke up this morning and checked to see how Noah is doing. His dad had posted at 2 in the morning. It isn't looking good at all. Please keep Noah and his family in your hearts and prayers.

[Sandy321]

Maroo - thanks for adding Noah and his precious family to the prayer circle! :grouphug: as we lift them up in God's hands! Continued prayers for Rachel :grouphug:

[maroo]

I woke up this morning and checked to see how Noah is doing. His dad had posted at 2 in the morning. It isn't looking good at all. Please keep Noah and his family in your hearts and prayers.

Yes...

I finally slept about 9 hours straight - and I feel MUCH better now - but woke up and checked his blog first thing. :sad1: I am so glad I am off today...:sad1:

[maroo]

Update - Wednesday #1

Rachel is about the same this morning.

But...

They just called for me to come there...so I am dropping this and going. More in a little bit...

[Sandy321]

Maroo - glad you are getting some sleep! Continued Hugs and prayers!!

[maroo]

Update #1 continued...

Rachel is not doing well this morning. She is very agitated and out of it.

The doctors are doing a scan to check her kidneys today and possibly an MRI and maybe a spinal tap. And are trying to find a medicine that will work to calm her down.

She has slept only 45 minutes since yesterday.

Please pray for Rachel and her Mom.

And Noah...He is not doing well, either. Pray for his whole family.

[jenb1023]

Update - Tuesday #3

We got some balls rolling today to hopefully get things figured out for Rachel.

One of her regular doctors has joined the team and things got moving pretty fast right after that.

The basic update is that they still don't know what is wrong. And she is now requiring a little bit of oxygen, as she was having some trouble breathing and her oxygen saturation levels were low.

We are all pretty concerned...because she does not seem to be getting any better. Her sodium levels are still low, despite days of continuous saline drips.

The plan is to increase the sodium tomorrow if she is still at the same level and they are doing some studies on her kidneys as well.

Please continue to pray...



On another note...
One of our precious Wish Kids....Noah. Is very sick at the hospital in Canada.

Here is his blog for more info...but he is very, very sick. Please also remember his family in your prayers, too. Noah, Mom-Nichole, Dad-Brad, Brother-Joshua and Sister-Kailyn.

http://www.noahgrantjohn.blogspot.com/

Yes...

I finally slept about 9 hours straight - and I feel MUCH better now - but woke up and checked his blog first thing. :sad1: I am so glad I am off today...:sad1:

Update - Wednesday #1

Rachel is about the same this morning.

But...

They just called for me to come there...so I am dropping this and going. More in a little bit...

Update #1 continued...

Rachel is not doing well this morning. She is very agitated and out of it.

The doctors are doing a scan to check her kidneys today and possibly an MRI and maybe a spinal tap. And are trying to find a medicine that will work to calm her down.

She has slept only 45 minutes since yesterday.

Please pray for Rachel and her Mom.

And Noah...He is not doing well, either. Pray for his whole family.

So sorry to hear Rachel is not well and that they are not finding any answers! I am so glad you got some rest and are able to be there for Rachel and her mom. More prayers and good thoughts sent to Rachel and her Mom and to Noah and his family. I keep watching for an update on Noah's blog today and keep hoping it will be good news.

[Sandy321]

The update I've read for Noah is that he is indeed fighting -

(Update: 12:00 pm July 29 ... This morning at around 9:00 Noah's blood pressure dropped to a critical low and he went into Cardiac Arrest. There was very little the doctors could do except some last effort medications. After almost 2 minutes, Noah (and God) had his own plan and returned to spontaneous circulation. He is still fighting and will have a tough day ahead. Thank you for all the prayers... God is real, he is listening, and answering...)


Continued prayers - joining the circle of believers knowing God is with us, God hears us, knows our needs - and is with us as we gather to lift up Rachel and Noah - may he provide the comfort and peace to their friends and families - God in your mercy - Hear our prayers!

[5dwarves]

Thanks for the updates on Noah and Rachel. As soon as I read the posts this morning I sent it to a local prayer chain list here. I know that neither of them are out of the woods yet, but I am hopeful they will be soon.

Elisa

[TarzansKat]

Oh, Maroo. :hug:

Will keep praying.

[MomTo4+more]

So much to pray for. I will be watching for updates for both Rachel and Noah.

[maroo]

Noah went Home tonight. He is resting in the arms of the only One who loves home more than hid Mom. He passed away at 2:00 this afternoon.

[MomTo4+more]

I checked Noah's blog just minutes ago and read that. My children and I had been praying ofr him often today. When I told them, Deyki said, "You're gonna make me cry, Mom. But Mom he is alive in Heaven, so why do we say he died?" The perspective of a child is so innocent and sweet. I am praying Noah's family is comforted picturing their sweet little boy playing happily and laughing freely in the presence of Jesus.

[Sandy321]

Noah stayed to touch so many lives that were connected by this thing called the internet!

Maroo - I pray that you find peace and comfort knowing that you are doing what you were called to do - it is not an easy job, and your heart is involved - stand up, and reach out to Him, feel His peace, and know, people care - You do make a difference!!

:grouphug:

[Sandy321]

I posted on the comment section - lifting up Noah's friends and family up in prayer - May God grant them the Peace beyond understanding in this time of sadness - I want to thak God for allowing Noah to touch so many lives, and through Noah, God was able to bring strangers together - I may not understand God's plan, but I am comforted knowing He does have a plan - even when my heart is heavy with sadness - gone too soon - but Jesus Called, and Noah answered...

[that's nice]

We are so sorry to hear about Noah.

We will be praying for him and his family.



Tim, Melody, & Juliana

[maroo]

I am just sick tonight.

The doctors are now telling Rachel's Mom (I missed the whole conversation going to get her something to eat and I am sick about that...because I don't actually know what was said...)
But the gist is that this is what they believe is a beginning of a decline.

The impression left with the people that heard was that of very bad news.

I have no timeline...or why they think this...I just know what the impression is around here.

At this point, Rachel is very, very agitated and she has a lot of visitors that drove many hours to get here...so I am downstairs in the big lobby...Sitting her in tears for Noah and Rachel.

Anyway. Please, please lift these families up in prayer.

The only time Rachel was calm today was a little while that we read some Scripture to her and we sang a few songs to her later...and the rest of the time she has been agitated.

[Sandy321]

Maroo you've lifted up your faith, and you trust in God - you are where you are supposed to be - even if that means going out for food! You dont beat yourself up - you do what your heart leads you to do - and take comfort that God IS USING you!! You have opened your heart, and it is good! Trust - and somehow, someway in prayer, know that the peace of the Lord is there - Rachel is God's child!! Rachel had a purpose here - we may not be able to understand - or like what is happening - and that is ok - we get to be angry - and hurt and confused, but in the end... we walk to our Father in Heaven, and trust...

songs are so helpful in this - sing your heart out Maroo -and add my voice to yours!!

Take comfort in the words in the words posted on Noah's blog -
God is real, he is listening, and answering...

you are in many many people's hearts and prayers Maroo!! :hug:

[maroo]

Wow. A scary few hours. To add to the very sad few hours.

Rachel gave us a little scare tonight. Her heart rate shot up and would not go down. We called the nurse. Who actually called the doctor. I should have been scared when the doctor showed up in the room in minutes. :eek:

Her heart rate stayed really, really high for almost 30 minutes, despite meds. But it eventually dropped back down to normal levels.

That was followed by an all out fit. Her body does not like that strong medicine! And she is STRONG.

But, she is now asleep and will hopefully stay that way a while tonight.

I am going to drive home, as I need to go to work tomorrow.

I am trying to figure out what we should do in honor of Noah...

I am thinking donations to GKTW in his honor would really be an awesome comfort to his family and be a blessing for future wish families...so I am going to see how we can do that. I will also find an address to send them cards.

Thank you all so much for your support! It means so much to me!

[TarzansKat]

Oh, Maroo. I wish I were there so that I could comfort you. You are such a blessing to all the people you know. I am so sorry to hear of Noah's passing, and I will continue to pray for his family and for Rachel.

[eyor44]

Hope Rachel had a few peaceful hours last night and hope you got some rest also Maroo. We will continue to pray for her and her family, as well as Noah's. :hug:

[jenb1023]

What a rough day yesterday! Between little Noah's death and Rachel's bad news and bad night, I think we are all ready for a bright new day today. Let us know if we can do anything more than send prayers and good thoughts. I hope you know that you are a blessing to Rachel and her mom and whatever you are able to do to help them is more than enough.

I think Jessica was working on Noah's address too fora card shower so you may want to try to coordinate with her.

Sending you and everyone involved a cyberhug - :hug:.

[tiggerbell]

Mary, My thoughts are with you, Noah, and Rachel today.

I'm not going to work, I'm going to sit with my mom at hospice. I'm going to bring the laptop and see if they have wireless, but I'm doubtful.

Thank you for keeping us informed and know that we are all here with you. :hug:

[jessica52877]

What a rough day yesterday! Between little Noah's death and Rachel's bad news and bad night, I think we are all ready for a bright new day today. Let us know if we can do anything more than send prayers and good thoughts. I hope you know that you are a blessing to Rachel and her mom and whatever you are able to do to help them is more than enough.

I think Jessica was working on Noah's address too fora card shower so you may want to try to coordinate with her.

Sending you and everyone involved a cyberhug - :hug:.

Yep, I was working on it and had to resort to asking Maroo! It is deleted from our address thread (because I made them all disappear one day). Great idea I had of how to store them! :confused3

So keep us updated Maroo if you find get an address. I think donations to GKTW is wonderful. I did that for Jonah.

[5dwarves]

Maroo...

We are praying for Rachel here and continue to pray for Nichole and Brad and their family.

The GKTW website has a donations tab and a space on the form to indicate if the donation is being made in someone's memory. We would need Noah's last name though.

[Sandy321]

Maroo - :grouphug:

sometimes a wealth of words can be silently spoken in a :hug:

:grouphug:

:littleangel:
(did anyone notice this smilie pop in on our front page of smilies today?)

The family has put up a memorial for Noah on the blogspot :
http://thekeowns.blogspot.com/

it has info I believe that will be helpful for the donations to GKTW!

[jessica52877]

Maroo...

We are praying for Rachel here and continue to pray for Nichole and Brad and their family.

The GKTW website has a donations tab and a space on the form to indicate if the donation is being made in someone's memory. We would need Noah's last name though.

I have their last name. I am not sure about posting it so please feel free to PM me if you anyone needs it.

[maroo]

There are many of you guys asking me for a way to honor Noah and his family...

We have several ideas, but would love some input from you guys...


If you are interested in participating this, please check out this separate thread...

Honoring Noah (http://www.disboards.com/showthread.php?p=32942485)

[maroo]

I have their last name. I am not sure about posting it so please feel free to PM me if you anyone needs it.

I think it is ok to post, I just could not remember it! (Sleep deprivation. ;))

Noah Grant John Loewen

You guys...if you have not seen it...just MUST check out this video ....

on this blog...

http://thekeowns.blogspot.com/

It is on today's date...(July 29, 2009)...and major tissue alert!

[maroo]

:littleangel:
(did anyone notice this smilie pop in on our front page of smilies today?)


:littleangel:

Webmaster Corey added that in honor of Noah.

:sad:

[If U Had Wings]

Maroo, I am so sorry to hear about Noah. All my prayers are with his familiy and Rachel.

[maroo]

Update on Rachel -

For those of you guys wondering...

I really have no update on Rachel. I have been calling and texting and all I have so far is that she is "the same"... they need a media contact! A press secretary! To keep us all updated.

If I don't have solid information by lunch, I will be going there for lunch.

More as I know! :)

[Sandy321]

continued prayers -

thanks for telling me about Noah's :littleangel: smilie

Get some rest Maroo - you have to make time for rest!! :hug:

[maroo]

Update Thursday #2

I am still at work and have not seen Rachel for myself, but all reports are that she is much worse today. Not able to recognize the people around her. Now she is just saying the same few words (which were the last ones we were saying to her last night to get her to calm down...)

sshh...
sshh...
and she is counting.

In the words of my pastor..."it is horrible, horrible...heartbreaking"

I am going to stay at work and work through lunch (I have lots I really have to do) and I am going to try to get off the DIS for a little while.

I will update you guys again after I have seen her myself, hopefully around 4 this afternoon central time.

[All7OfUs]

Maroo, it must be so incredibly hard to watch a good friend suffer, but be reminded God DOES have a plan :J) He, who is Good and Faithful is watching over her- and you too!

Grief is a hard thing to go through, if you need to talk you know where to find me. :surfweb:

[Sandy321]

continued prayers!

[maroo]

Update #3 for Thursday, July 30

I am sitting here with Rachel. She is resting and worship music is playing in her room. Very peaceful.

But the past few hours have not been good for them. A bunch of "white coats" - ok, doctors, but today they all looked like blobs in white coats...because it was just so surreal (strange how their faces seem to fade when the words coming out of their mouths are so dizzying) - came around and let Joyce know that indeed they have no idea what is causing this. And that at this point they are only trying to make her comfortable.

No idea what sort of time table we have here...but her lab results are indicative of someone getting much worse, not better. And this has all happened so fast.

Just a week or so ago we were all excitedly talking about our trip to Disney World and now...:sad2:

Ra has not been awake since I have been here...so I have not seen her disposition for myself.

But for now I am just sick.

Thank you all so much for your posts, PM's, emails, and calls. They mean so very much to me. It has been a difficult few days.

[jenb1023]

:hug: I am glad to hear Rachel is resting peacefully but my heart aches for all of you. Hang in there and keep us posted.

[maroo]

Hey guys.

The Honoring Noah thread just got locked....I am working on getting it unlocked...

:faint:

[Sandy321]

Hey guys.

The Honoring Noah thread just got locked....I am working on getting it unlocked...

:faint:

oh for heaven's sake - is it because some nerd thinks we're "soliciting funds"? I know that Webmaster Alex, or Pete allowed the Deb's Walk for Cancer to be posted!! I think they fear the "what ifs"

oh its not locked now!!

:grouphug:

I've been in a hospital room like that - I've been praying, and remembering my best friend Debbie who died from Cystic Fibrosis way back in the early '80s - and I remember when she finally found rest - sleep - and how the doctor's helped us - back then I had a prayer group - prayer warriors that came and prayed thru the night!! You all are on God's time - we dont know what He has in store for us - but we do Trust in Him!!

:grouphug:

[maroo]

oh for heaven's sake - is it because some nerd thinks we're "soliciting funds"? I know that Webmaster Alex, or Pete allowed the Deb's Walk for Cancer to be posted!! I think they fear the "what ifs"

oh its not locked now!!

:grouphug:

I've been in a hospital room like that - I've been praying, and remembering my best friend Debbie who died from Cystic Fibrosis way back in the early '80s - and I remember when she finally found rest - sleep - and how the doctor's helped us - back then I had a prayer group - prayer warriors that came and prayed thru the night!! You all are on God's time - we dont know what He has in store for us - but we do Trust in Him!!

:grouphug:

I guess it was opened pretty quick??? I am so confused.

Anyway...

Rachel is still sleeping.

Sandy- your prayers mean so much to me!! Keep them coming! They are etched in forever when you pray them here...

The Deacons from our church just came and prayed and we have folks now praying around the clock - we know He is here.

[VroomVroomLightning]

I just wanted to tell you for the longest time I have been following your trip reports and now today I have went through and probably read more than 10Make a Wish trip reports. You are such an amazing person with the help that you are giving to these families. You are in my prayers along with Noah's family and your dear friend Rachel. It's times like this when so much happens at once that you just take a moment and remind yourself how thankful we are for the little things in life.

Last week I had signed up for the Dis Big Give for Lucas' family. And, until everything that had happened with Noah I had put it to the back of my mind because I have so much other stuff going on as I know we all do. As I started reading the Trip Reports today I couldn't stop crying at how amazing these families are. I went right out and bought the stuff for Lucas' give and will be buying the things for the other give in the next week or so.

Sorry that i hijacked your thread I just wanted to say how amazing of a person you are and that the world needs more people like you.

On another note..again..I willll miss you by one day in September :headache: We are arriving in the evening on the 10th!!

Maybe another time we can meet up!

Ok again sorry for hijacking this thread!

[TarzansKat]

Maroo, I just want you to know I'm still thinking of you, and praying for you and all the families. :hug:

[eyor44]

Maroo, just checking to see what has transpired today and how Rachel is. We will keep praying. Take care of yourself.:hug:

[shannn]

I will be away from the boards for a few days, but I wanted to check in with you and assure you that I have been and will continue praying for Rachel. Please feel the love and support of all the boards surrounding you through everything and know we're with you. :grouphug:

[maroo]

Friday Update #1 - ICU

Rachel is now in the ICU. She had trouble breathing last night and they moved her to the Medical ICU. Rachel has a Do Not Resuscitate order, so they will not be intubating her or doing any heroic measures. We have no timetable for this, but it seems like things are continuing to go downhill fast.

Please pray for Joyce. And that the whole situation would work out for God's glory.

Thank you for praying!

[All7OfUs]

You know we are! :grouphug:

[jenb1023]

:grouphug: I checked first thing this morning to see if you had updated yet. I am so sorry. Prayers are being sent to all of you.

[Sandy321]

Maroo - :grouphug:

I know not what His plan is - but I join the circle that knows with all our hearts that He is with us - and we must trust Him. Know Maroo, He is using you - and you are allowed to take comfort in His broad shoulders - lean on Him - know God also cries. It is times like these where I take to heart the poem of Footprints in the sand - There was a song I learned in choir - "For those tears I died" and Jesus said come to the water, stand by my side, I know you are thirsty, you wont be denied . . . for I felt every tear drop when in darkness you cried and I strove to remind you - for those tears I died"

know Maroo and share with Joyce - all over this great land - we are joining in prayer - we are lifting you and Rachel and her family up in prayer!! :hug:

[VroomVroomLightning]

Maroo,
You and Rachel's family have been in my constant prayers. :hug:

[Somer]

maroo,
I'm so sorry, please know you and rachel and her family are all in our prayers.

[If U Had Wings]

I will keep all of you in my prayers!

[maroo]

Friday Update #2 - ICU

Joyce is able to stay with Rachel back there. Which is very nice, because normally they don't let people back there.

They are now saying that they believe she has an infection that has made her septic (in the blood) and that it could have crossed into her brain.

Joyce has this sudden peace this afternoon. Long story, but it sounds like Rachel is saying goodbye.

I will keep you guys updated.

Thank you for praying. We certainly feel your prayers.

[jenb1023]

:grouphug: I am so sorry. :grouphug:
I am happy though that both Rachel and Joyce have seemed to found some peace with everything.

[Sandy321]

I'm so glad that Joyce can feel the AWESOME spirit of the Lord - I am so sorry about Rachel, I feel so sad for Joyce, the only thing I can hold onto is the peace of the Lord - constant prayers - that the Lord may shoulder the pain and leave His peace -

[macntosh]

Friday Update #1 - ICU

Rachel is now in the ICU. She had trouble breathing last night and they moved her to the Medical ICU. Rachel has a Do Not Resuscitate order, so they will not be intubating her or doing any heroic measures. We have no timetable for this, but it seems like things are continuing to go downhill fast.

Please pray for Joyce. And that the whole situation would work out for God's glory.

Thank you for praying!


Maroo, your an amazing spirit and I'm glad this family has you to show how much the Lord has loved us. Be strong in his Spirit and know the saints and angels are singing praises to our King with you.

In his spirit!

Matthew

[MomTo4+more]

I only know One who gives peace beyond all understanding. I am glad they are sensing He is near. Still praying.

[Sandy321]

Maroo - this is not an easy time - its getting late - the night is near - take comfort in all who are surrounding you in spirit - dont let go - He is near, He has a plan for us, Let go, Let God - - so much easier said than done - we're here - praying...praying.... praying always. without ceasing!

:grouphug:

[eyor44]

Maroo
Still praying for everyone. You, Joyce, Rachel and the doctors. Know that we are all here for you.

[VroomVroomLightning]

I just wanted to let you know that you and Rachel's family are in my prayers :hug:

[KathyRN137]

http://i141.photobucket.com/albums/r50/stefscrazy4u/sacredheartscreen.jpg

Jesus, we trust in You



Kathy :grouphug:

[maroo]

Friday Update #3 - ICU

I think I may actually have some good news! Not much...but the first sign of improvement we have seen. She is producing a little more urine. This is important, as it may mean she is regulating her electrolytes a little better.

She has gained a lot of water weight...they think almost 20 pounds. :eek:

They are messing with her fluids, so hopefully that will help.

We have a LOT of unanswered questions tonight. Ra is so agitated that they have had to restrain her and sent all visitors out. For the night, probably.

But she made it through the day, which I am encouraged about.


I did get home and got the mail and my planning DVD from Disney was in the mail for our trip. I lost it. :sad: I can't even believe that we won't make it to that magical trip...so I am determined to believe we can. Maybe this is just the medicine she was on (which they have stopped 2 of her medicines now) and maybe she can come out of this and we can get Rachel back. She has beaten death before.


Noah, tiggerbell (lost her Mom), Mya...we have all had bad news this week that just reminds us...

Go hug your kids. Go make up with your spouse. Call your parents. Write a letter (snail mail - it's a lost art) to your best friend.

Treasure the time you have with your family and friends - you never know when you will be sitting in the ICU waiting room. Life changes in an instant.

I love you guys. Thanks for all of the support...it means so very much to me!

I will keep you guys updated. I am now home and going to sleep before midnight for the first time in days.

[Sandy321]

May you have a peaceful sleep - with sweet dreams!! :grouphug:

Rest

continued prayers!

[VroomVroomLightning]

Good News...YAY...I will keep checking for updates :hug:

[A.Mickey]

I'm here:hug: I hope you are getting some well deserved sleep! What a draining week it has been for you! I hope things turn for the better with Rachael:wizard:

[eyor44]

Praise the Lord for small miracles! We will keep praying and Maroo you keep on believing. :grouphug:

[MomTo4+more]

It's a glimmer of hope. I hope things can keep improving for her. We are still praying!

[jenb1023]

Sorry to hear she is still agitated but glad to hear there seems to be a little improvement. :grouphug: to all of you! Keep us posted whenever you have time.

[maroo]

Saturday Update #1 - ICU

We are BETTER!!!!!!!

Not much better. Not all the way better. But they found that she was septic (blood infection) and started antibiotics yesterday for that.

For the first time in days, we are looking forward to the future.

The bottom line is that doctors are now saying...she is better and that they have a long road ahead.

Which is much better than what we were looking at yesterday.

[Sandy321]

Awesome Maroo!! Its so hard to find words, to know what to say!! Thankful that God knows before we do - knowing that to ask for His peace, and His will be done - helps to know God is in control!

Hang in there Maroo - we're all following your story!! Let Joyce know we're still praying without ceasing!!

How's your voice btw? Are you still singing? Can you put any cd players in her ICU room? I know they have mini mini boom boxes for Ipods these days! Music helps!!

[VroomVroomLightning]

I read your update and it brought to tears to my eyes. I am so happy for Rachel, you, and her family! I will keep you in my constant prayers! :grouphug:

[maroo]

Awesome Maroo!! Its so hard to find words, to know what to say!! Thankful that God knows before we do - knowing that to ask for His peace, and His will be done - helps to know God is in control!

Hang in there Maroo - we're all following your story!! Let Joyce know we're still praying without ceasing!!

How's your voice btw? Are you still singing? Can you put any cd players in her ICU room? I know they have mini mini boom boxes for Ipods these days! Music helps!!

She has headphones and has requested her "Jesus music"...all of her Christian music that is on a special playlist. :) We even turn the phones way up and she can hear the music without the phones on her head.

[tinytreasures]

more prayers coming her way

[tiggerbell]

Rachel and Joyce are never far from my thoughts today... :hug:

[maroo]

Rachel and Joyce are never far from my thoughts today... :hug:

You are in my thoughts, too! :hug: :hug: :hug: Hang in there, Jamie!

[MomTo4+more]

My children exclaimed, "Praise the Lord!" when they heard your update. Deyki thinks his favorite songs from Children's Church would be good for Rachel. He likes me to sing them to him when he is in the hospital. I wish I could send them your way.

The first says, "Open up your eyes, take a look around you. Then you will see all that God's done. The smile on your face. The love of your family. Everything good comes from God above. Don't forget all of God's blessings. Don't forget where they come from. Don't forget that He really loves you. Don't forget His wonderful love."

The second says, "No matter where you go or what you you do Jesus is always there for you. Whether near or far, right where you are, Jesus is always there for, always there for, always there for you!"


I tell you, those songs take on a much deeper meaning when sung in the ICU. I almost teared up hearing it sung at Children's Church after spending a week singing it at his hospital bed.

I will keep praying. Thanks for sharing this bits of hope with us!

[jenb1023]

Mary - what great news! I was so worried what the next post was going to be and was dreading reading it. Tell Joyce and Rachel that they have lots of people rooting them on and sending love, prayers and strength.

[maroo]

Saturday Update #2 - ICU

FINALLY!!!!

Seriously good news!

Rachel (who is going to just love to read all of this later :rolleyes:) just told off the nurse! Using full sentences!

Rachel asked for her Mom and Joyce was downstairs, so it took her a minute or two to get in there and Rachel went off on the nurse.

Now I feel like using the dancing bananas!! :banana: :banana: :banana:

:dance3: :yay: :woohoo:

[VroomVroomLightning]

Saturday Update #2 - ICU

FINALLY!!!!

Seriously good news!

Rachel (who is going to just love to read all of this later :rolleyes:) just told off the nurse! Using full sentences!

Rachel asked for her Mom and Joyce was downstairs, so it took her a minute or two to get in there and Rachel went off on the nurse.

Now I feel like using the dancing bananas!! :banana: :banana: :banana:

:dance3: :yay: :woohoo:


YAY! You go Rachel! That is really good news!! YAY!! :banana::banana:

[jenb1023]

That is amazing news and deserves tons of dancing/cheering!
:cool1::cool1::banana::banana::woohoo:
:dance3::cheer2::cheer2::yay::yay:

[JPFamilyMom]

:woohoo::woohoo:Great news :cheer2::cheer2:

[kimmylaj]

:cool1::dance3::yay::banana::banana::cheer2::group hug:
yeah for rachel's fighting spirit

[Sandy321]

May Rachel's spirit continue to soar!!!

Lord hear our prayers!!

[eyor44]

How Wonderful!:banana::cool1::woohoo::dance3:party:
:jumping1:

You go Rachel! Hope that nurse is okay. :upsidedow

I am so happy to hear she is doing better. Prayers are a wonderful thing.

[maroo]

You go Rachel! Hope that nurse is okay. :upsidedow

I am so happy to hear she is doing better. Prayers are a wonderful thing.

lol

The nurse is fine. :) We did have to explain to her why we were so HAPPY that she got "yelled" at. :rotfl:

The nurse thought we would be mad at her...uh, no! Ra was just mad that she was getting a breathing treatment.

[that's nice]

I'm glad to hear Rachel is getting better. :yay:

Hang in there Maroo.:hug:

[KathyRN137]

Rachel (who is going to just love to read all of this later :rolleyes:) just told off the nurse! Using full sentences!



Not to worry... we're used to it! http://i179.photobucket.com/albums/w284/KathyRN137/Smilies/nurse.gif

I'm so glad she's coming around!


Kathy

[maroo]

Saturday Update #3 - ICU

Yeah...Rachel told the nurse sorry no less than three times later.

Y'all... She is doing SO MUCH BETTER!

I saw her myself...with my own two eyes...tonight. And am doing night duty tonight. She is just precious. Still really agitated, but is doing so much better. She looks better. Sounds better! I have not seen any numbers or talked to any doctors, but I think our Rachel is coming back - slowly but surely - coming back!


I had heard stories today that describe that Rachel has overcome a LOT in the past. There were several times during her spinal surgery that they simply thought she would not make it. But her Mom's faith has stayed strong for her daughter - that she would make it! When Joyce got nervous, we all got nervous. But we are all so encouraged tonight.

This is going to be a long road...and at some point, I will stop updating several times a day...but we will have lots of things to focus in the future days and even weeks to come.

The things we are working on now are getting together a team of people to rally around Joyce. To help share the load of a single Mom with a special needs child. Joyce has been doing this by herself for too long. She needs more people around her.

One of Rachel's very best friends is moving to our city this week. This is such a God thing, because Rachel loves this young lady and vice versa. And she can be a member of Rachel's Team. And I can be a member, too. And we can recruit some others to help as well.


On a side note... it is so sad being up here in the ICU waiting room. This hospital is HUGE and has several different ICU's...I think 6 of them? But this one appears to be where they put a lot of medically sick folks. Not a transition area like a Surgical ICU or Cardiac. But they are getting 4 new patients tonight and it is going to be wild in here. They said "the ER just went wild"... great. :rolleyes:

[jenb1023]

I am so glad to hear that things are looking so much better! :cool1::banana::woohoo::yay:

Even though she has a long road ahead of her that is still so wonderful compared to where you thought this was headed not too long ago.

Although we can't be part of the team to help Rachel in person (which is so great of you guys to do), I am sure all of us will continue to be on the team that is rooting her on and sending prayers and good thoughts.

[MomTo4+more]

A team is a great idea! Our church has been a great support for me. When we first moved to the city and I didn't know a lot of people yet, they formed a list of moms willing to help me with childcare whenever Deyki needed to be admitted. I had two point people to call and they would help arrange care for my girls. It didn't take long to get to know people well enough that a more "natural" team formed. It's been great! Every time I have needed someone, they have been there. Even Christmas morning when we raced to the ER, there were families willing to come get the other three children. There have been plenty of offers to make meal - but with Deyki's allergies that's too hard.

Anyway, enough about Deyki - I am so glad that Rachel is improving! I'm glad that a team will be rallied around her and her mom. I'll be part of the team that prays for them!

[TarzansKat]

Go hug your kids. Go make up with your spouse. Call your parents. Write a letter (snail mail - it's a lost art) to your best friend.


So true, hon. Beautiful words.

Saturday Update #1 - ICU

We are BETTER!!!!!!!

Thank GOD!!!!!

I am so glad to read in your further updates that Rachel is doing better. The power of prayer and faith is truly astonishing. I know it never fails to amaze me, no matter how many times I may see it in action. :grouphug:

[Sandy321]

Well it sounds like some singing is happening!! This is the day, this is the day.... that the Lord has made... Let us rejoice... and be glad in it!!

Thank God for His love and Spirit - we Praise Him today, and thank Him for hearing our prayers - we ask God for His continued guidance as more decisions are being made, and more questions are being asked - Please Lord give your peace and guidance - may the doctors have the wisdom and discernment as we go forward each moment, each day as we rally around Rachel!! Thank you for hearing our prayers - may your will be done in all things!! Please Lord continue to send the support and love and peace to Joyce as she travels this road you have sent her on, may she forever know she is not alone - you hear her prayers and you are sending her the people she has asked You for!!

[eyor44]

More wonderful news this morning!:cool1: Count me in on the prayer friends. Is Rachel well enough for cards now? Can we send some?

[maroo]

Sunday Update #1 - ICU

She seems really agitated this morning. More than yesterday. Which is discouraging, but she is able to answer questions when we ask them.

I gotta go...she is actually calling for me. But I will update more later......

[If U Had Wings]

I'm sorry she's a bit agitated today, but am so happy to hear tht there has been improvements! That's wonderful.

[TarzansKat]

Maroo, I hope things continue to get better. :hug:

[maroo]

Sunday Update #??

Do you count the last one? I don't know?

I feel like we are on a roller coaster. She was so much better yesterday, but then today she has regressed some, but then got better (was calling for me and they let me go back there!), but now she is back to where she was.

anyway...

Please, please don't quit praying for them! We had a BUNCH of people up here on Friday/Saturday, but not many today, as most of the family that came running had to go back home for work.

This is going to be a very long road.

[VroomVroomLightning]

Rachel's family and you have not left my prayers! There is a song I am not sure if you have heard of it before it is by the Dove Brothers it is called "I Can Pray". I love that song and listen to it all of the time. It is a song that is saying when you can do nothing else you can pray! :hug:

[5dwarves]

Maroo:

I am so glad that Rachel is better than she was. It seems that the words ICU and rollercoasters always go hand in hand. Hopefully Rachel will be back in Fantasyland on ...let's say Peter Pan:tinker: , and off of the E ticket ride, Expedition Everest , soon!

[KathyRN137]

Wonderful news, Maroo!! :hug:


Kathy

[Sandy321]

Maroo - just so you know -

I'm still praying!! : )

[VroomVroomLightning]

I hope things are still looking up. :hug:

P.S.

I have been listening to this song a lot lately and wasn't sure if you had heard it before. The name of the song is "I Can Pray" by the Dove Brothers. It is such a moving song to me.

[maroo]

Sunday Update - ICU

I have not really known what to write today. One minute she is doing GREAT and another she is scaring us a little again.

They did a Chest CT today, but we don't have the results yet. Hopefully we will know something before I go to work tomorrow.

She is improving overall and has had a decent day, but is still struggling.

Please continue to pray for Rachel and her Mom.

Thank you all for praying!!!!


** On another note! The schedule for Magic Meets is now printed and it looks like it is going to be a lot of fun!!

[eyor44]

Sunday Update - ICU
Please continue to pray for Rachel and her Mom.
** On another note! The schedule for Magic Meets is now printed and it looks like it is going to be a lot of fun!!



Yes, most definitly we will continue to pray. Ups and downs are to be expected, but we will continue to pray. :hug:

[purplepeg]

oh I hope this is just a dip and she's on her way up:goodvibes

[Sandy321]

Good Morning Maroo! (and Maroo fans!)

sitting here in the morning light, readying the prayer chain - and check in - May the peace of the Lord be strong in you today! Continued prayers for Rachel and Joyce!

I love when songs are posted - they are uplifting, and prayerful!!

[maroo]

Monday Update #1 - ICU

Good morning everyone!

So far so good this morning!

Ra is still in ICU, but was talking up a storm today about the iPhone she was supposed to get yesterday (she has been waiting for August 2nd for months so she can get her iPhone with her phone upgrade).

There are concerns about her lungs and her heart this morning, so not sure if they will move her to a regular room this morning or not.

We are waiting on the CT results and they may do some heart studies today.

We still don't really know what caused this, which is frustrating. But we are certainly thankful she is better this morning!!

[TarzansKat]

Glad to hear things are looking up.

Will keep praying! :goodvibes

[If U Had Wings]

So glad to hear that she is doing better this morning!

[jenb1023]

Glad to hear things are better! I hope they can give you guys some answers soon!

[All7OfUs]

I'm so glad she's doing better today. I think she will have ups and downs, but overall this is great news! She really scared the pants off of us! She must be a strong, strong girl.:thumbsup2

[eyor44]

Wonderful news this morning. Hope the tests turn out well.

[Sandy321]

*smile - she wants to upgrade to an iphone!!! :rotfl2: as well as :worship:

Maroo - how are you doing?!

[maroo]

Monday Update #2 - ICU

Well...we have reason to stay guarded here. She has had a rough afternoon with her oxygen sats (requiring more oxygen than yesterday) and her numbers are not looking as good as they were this morning.

In the meantime, they have just let us know the "unofficial" results of her chest scan, which indicate double pleural effusion (fluid on her lungs), a double collapsed lower lobe (both lungs), and cardiomyopathy (all 4 chambers of her heart and the pulmonary artery are enlarged). The official results will come later when the doctor that actually ordered the test weighs in.

This all sounds very bad...and could be. But it also could be what it 'normally' looks like. We know Ra has fluid on her lungs, that is something the pulmonary dr was worried about a month or more ago. And they already know she has heart "damage" from the MPS. But this is keeping her in ICU for now.

They should be able to get the old scans to compare to and/or get a heart scan to check the function of her heart. And that should clear the picture up for us.

*** Addendum: Just got a text that the numbers indicate she is in congestive heart failure.

Please pray.....I have no idea what that means. But please pray.

[Sandy321]

Dear Heavenly Father - we join together in prayer and lift RAchel up - her needs are great dear Lord - you are her Father in Heaven and we know when 2 or more gather in your name - you are there - we know you are with her dear Lord - please surround Rachel and Joyce in your peace Lord - we ask Lord that you be ever present in this difficult time - we know not what to ask Lord, but our faith sustains us, knowing you are with Rachel and Joyce -

[eyor44]

Lord, please lay your healing hands on Rachel and support Joyce with your loving strength. Please give Mary the strength she needs to be there for both of them.

[tinytreasures]

prayers sent

[llurgy]

Praying so hard for Rachel, your dear friend! So sad to hear this news when I was so excited to hear that she seemed tp be pulling out of it.
I have in my mind some Halloween (I think it was) you posted some pics of you and Rachel...I am seeing those pictures in my mind, when you were both so happy and laughing together and envisioning a Rachel restored to the health she had then.
Those were wonderful pics, but I cant find them again.

Praying

Love
Mandy

[jenb1023]

I am so sorry! I hope that they can find answers. Still praying.

[TarzansKat]

Maroo, I continue to pray for your dear friend and her whole family. May God bless you all.

[kimmylaj]

still praying

[maroo]

Monday Update #3 - A ROOM!!!!!

Well...no echo results - but they are moving us out of the ICU!

They had several additions to the ICU tonight and Rachel was the "most ready" to leave! So we are GONE from the ICU to make room for some more needy patients and will be eventually settled into a regular room tonight.

On the way to move all of her stuff her Mom stopped short in the hallway and looked at me and said....

"You know, we need to get her well so we can go to Disney World."

:sad: and :cloud9:


I want to get her to Disney World so bad! I want Rachel and her family to have a wonderful relaxing time in Disney. I have spent time with Justin and Gina and heard Ellie stories all week long. I have met Rosemary and cried with Joyce. We would really be due for a nice trip and we would all have so much fun.

So we have a goal. Disney. :sad:

[If U Had Wings]

I'm glad to hear that she's being moved to a room. Lots of prayers still heading your way.

[MKBekka]

Yay, she's getting better! I finally got all caught up! I am SO happy for you!! :yay: :dance3: After all this Rachel's family deserves a Disney trip.

[eyor44]

I'm praying Rachel had a good night.

[MomTo4+more]

Still praying.

[Sandy321]

Thank God for Disney!

Still praying!

[TarzansKat]

I hope everything is going well. Having that goal of Disney may be a god send, you know? Something to look forward to at the very least. :goodvibes

[maroo]

Tuesday Update :)

It has been a week full of ups and downs. But it seems like we are taking a turn for the better for sure!

My third hand information this morning is that the heart echo was "fine" - I tried for more details and failed miserably!

But she is in a room and is in good spirits this morning despite a very long night of only 2 hours of sleep.

Please keep praying for her! I am not able to be there today, as I am taking care of Lauren and William after work today through tomorrow, so I won't see Ra again until tomorrow as long as she is doing ok.

Ra has several friends in town to help, so Joyce is getting a little break today, which is great!!

So...no news from me for today will be GOOD news!!!

[jenb1023]

:cheer2:Great news about the room and how she is doing!:cheer2:
I think getting to Disney in December is a great goal too!

[Sandy321]

Tuesday Update :)

It has been a week full of ups and downs. But it seems like we are taking a turn for the better for sure!

My third hand information this morning is that the heart echo was "fine" - I tried for more details and failed miserably!

But she is in a room and is in good spirits this morning despite a very long night of only 2 hours of sleep.

Please keep praying for her! I am not able to be there today, as I am taking care of Lauren and William after work today through tomorrow, so I won't see Ra again until tomorrow as long as she is doing ok.

Ra has several friends in town to help, so Joyce is getting a little break today, which is great!!

So...no news from me for today will be GOOD news!!!

got it - no news from you!! Hope Lauren and William have a good day today! and you can enjoy a break with them! Glad Joyce is getting a break as well - continued prayers!

[eyor44]

I was a bit concerned after the kryptic message last night that you posted. Glad she is doing well this morning. Tell Lauren and William we said hello. Been wondering how things were going at their house. How is Grandmother?

[VroomVroomLightning]

Glad to hear things are looking up! I hope you have a fun night with Lauren and William! :cool1:

[maroo]

I was a bit concerned after the kryptic message last night that you posted. Glad she is doing well this morning. Tell Lauren and William we said hello. Been wondering how things were going at their house. How is Grandmother?

uh oh...was I cryptic? Gosh...I didn't mean to be? :eek:

I am excited about seeing Lauren and William. Would be a little more excited if I was not so tired. But it will be good to see them! :)

Thank you SO MUCH for asking about Grandmother! Talk about a major praise there....She is doing GREAT! They have moved back to their house. She is actually able to get around fairly well using a walker and they are really doing quite well.

Her surgeon was AMAZED that she was doing so well!

[that's nice]

I'm glad to hear things are getting a bit better. We will keep Rachel in our prayers.

[tinytreasures]

so thankful to hear she is in a room :love:

[eyor44]

so by no update on Rachel, I am taking that as a good sign:thumbsup2

and :woohoo: for Grandmother!:woohoo:

[Sandy321]

:cheer2: WTG indeed to Grandma!

Maroo Hope you had a peaceful night! we're still praying. praying. praying!

[VroomVroomLightning]

I hope Rachel is feeling better still today! Prayers still being sent out!

[VroomVroomLightning]

Are we still going with no news means good news? Hope everything is still going better for Rachel! Prayers still being said all the time!

[maroo]

Thursday Update

First, I am sorry for no update yesterday. No news was indeed good news. But this is a roller coaster ride.

Yesterday was a little wild for me, as I had both Lauren and William by myself from Wed afternoon right after work to last night.

When I got home I was not packed for Magic Meets (leave today right after work)...so needless to say, it has been a crazy two days.

But...we were able to go see Rachel yesterday and she was sitting up in bed and talking to us and using her computer. Which is all wonderful progress! She had 2 seizures on Tuesday night, but that was not a huge surprise, since they took her off all of her seizure meds.

But, this morning, Joyce sent me a text that Rachel is back to not knowing where she is today. This is very, very discouraging for all of us.

I will be going there for lunch and hopefully will have another update for you guys this afternoon.

I leave for Magic Meets right after work and will be traveling most of the evening, but hopefully will be able to keep you guys updated.

[tiggerbell]

Thank you for keeping us in the loop - I know I'm not alone in saying that Rachel is in our thoughts a lot!

I'm glad to hear you're still doing Magic Meets - I was afraid you wouldn't go. HAVE FUN!!!!! :hug:

[All7OfUs]

So, so glad you are going; you REALLY need a break!!

Make sure to do amazing amounts of recon. for us, k? Find out all the inside scoop, and bring back lots of pix!!

[jenb1023]

I was so excited to read about how Rachel was doing yesterday and then I got to the part about today and Joyce's text message. Hopefully it was just a minor setback and that she will be back to herself later today! I will still be praying and sending good thoughts to Rachel and Joyce.

On a happier note, I am so glad you are still doing Magic Meets and I will see you tomorrow! :cool1:

[eyor44]

Maybe one of Rachel's meds is out of whack and they just haven't figured out which one? gosh, I hope they figure it out soon and I know y'all are hoping for the same thing.

Have fun at the Magic Meet. I'm glad you are going. Have a blast!

[TarzansKat]

Maroo, I hope Rachel continues that upward climb and heals again.

And I hope you have a wonderful time at Magic Meets! Enjoy! :goodvibes

[maroo]

Friday Update

Rachel is about the same today. Still having seizures. Still going in and out of spells where she gets really confused.

She will definitely be in the hospital through the weekend.

[maroo]

Magic Meets

I am going to attempt a "live" report from Magic Meets. For those of you guys that have Twitter - I am maroo268 and you can follow me there. I will have lots of tweets this weekend!


My trip started out with a bang yesterday. I had a limited amount of time to get from work, to home to get my stuff and Muffin, and to the airport. We have a small airport, but I still have to be there early enough to check in. As I was leaving work I noticed that I left the inside light on in my car....:rolleyes1 Yep - battery was DEAD! :eek:

How on earth am I going to make my plane? :scared1: But a quick call to security and a plea to hurry had me jumped off and going in less than 10 minutes. :thumbsup2 Home. Get Muffin. To the airport.

I checked in and must have looked harried, because the nice lady decided I deserved a little pixie dust and let Muffin fly free. $100 savings! Woo Hoo!!

My first flight was interesting. A nice lady named Jasmine was across the aisle from me and she was petrified of flying. First flight. She was so freaked out that someone in front of her gave her a teddy bear! :scared1: So I spent most of that 2 hour flight trying to reassure her.

My second flight was uneventful. Shuttle to the hotel was perfect!

I have an awesome room that has an internal hallway door AND a door to the outside so that I can easily let Muffin out. :love:

I did not sleep well. Muffin kept waking me up - she even barked a few times when she heard a strange noise (and there are plenty of those!).

I made a "cheat sheet" yesterday for the WDW Today team (Matt Hochberg, Mike Newell, Mike Scopa and Len Testa, but he is not here) to use tomorrow when they have a LIVE webcast all day. They are raising money for Make a Wish and I figured they could use some information about Wish Trips and some neat stories from the DIS to help raise even more money for Make a Wish during their webcast.

So I walked over to the Convention Area today, but only found closed doors with big signs that said not to come in - Magic In Progress! But I was just about to leave when two men walked out one of the doors. Here is how this conversation went....


Maroo: Sirs, Do you mind telling me where I....

Mike Newell: Mary! I recognize you! (Puts hand out to shake my hand) I am Mike Newell.

Maroo: *thinking - OMG!* :eek: How did you recognize ME? You are exactly who I was looking for!

Mike Newell: I am glad you found me! I recognize you from your Facebook page picture. Mary, meet Mike Scopa (the man standing beside him!)

I shake hands with Mike Scopa. Mike Newell explains that I am the auction winner and we sat there talking for several minutes. Then they asked if I had met Deb Wills yet and I said No - but that I hoped to meet her this weekend.

But they went and got her right away to come meet me. She was so nice! They had a photographer take our picture.

We all stood around talking about how I got hooked on Disney. They were shocked that I was such a "newbie" and that I had come solo. Mike Newell even asked if my Mom was with me. LOL My Mom doesn't even know I am here. :rotfl2:

Then Matt Hochberg walked up with his wife. They introduced me to him, too. We talked about the fact that Twitter was down since it got hacked yesterday!

We talked for a while. They are so nice!

You would think I would want to take pictures of them or with them...but honestly, our conversation was so informal and they are just people that I thought taking a picture of them would be a little (ok a lot) strange!

But I am here!!

In a few minutes Jen is going to come pick me up (and Muffin!) and we are going to spend the afternoon hanging out!

Then tonight we have a "Meet Before the Magic" party (limited to only 100 people!), a Celebrity Magic Tunes event and a Karaoke Party.

I am so excited!!

This may be my last Magic Meets update for a while. But you can follow me on Twitter and I will be updating that all weekend long. My Twitter ID is maroo268.

[JPFamilyMom]

Oh your there, how fun, can't wait to read all about it later

****with this post I just became a DIS veteran:cheer2::woohoo::yay:

[eyor44]

YAY! for Maroo. :woohoo: Wow! just arriving and you have met so many people. Have a grand time.

[VroomVroomLightning]

I am glad that you are having fun! Can't wait to hear all about it!

[that's nice]

Maroo,
It sounds like you are off to a good start! Time to find out when they are gonna let people stay for a week for free!:rotfl2:

Have FUN!:teleport:

[TarzansKat]

Wow, it sounds like you're having a great time! I can't believe you got to meet everyone right away, that's awesome! I can't wait to hear more.

popcorn::popcorn::popcorn::

;)

[All7OfUs]

WOW! You are having an amazing time with lots going on! Being interviewed, meeting celebs, and best of all having a week off. You need it!! Continue having a great time, and keep gathering lots of good hints and tips for us.

[StefaniLyn]

Back to Magic Meets Discussion...


http://i460.photobucket.com/albums/qq324/mblaine/2010/maroo%20art/swimmingandmuffinshirt080.jpg

It says, "My Mommy Loves ME more than The MOUSE" :love:
!


I was just listening to the (I think) live broadcast and you must be right there because I heard them talking about Muffin's shirt (unless someone else totoally swiped your idea and made an identical one)! How cool! You and Muffin are like celebrities at DISMeets! Can I have Muffin's pawtograph? :rotfl2:

[KathyRN137]

Have fun at Magic Meets!!! :cloud9:


Kathy

[maroo]

I was just listening to the (I think) live broadcast and you must be right there because I heard them talking about Muffin's shirt (unless someone else totoally swiped your idea and made an identical one)! How cool! You and Muffin are like celebrities at DISMeets! Can I have Muffin's pawtograph? :rotfl2:

Muffin's famous. :lmao:

They were so talking about Muffin's shirt! :rotfl: :rotfl2: :lmao:

Sure! I will be glad to give you a Muffin pawtograph! Ha ha!!

I actually felt a little like a celebrity there, honestly. :rotfl:

I will have to tell you guys all about it when I get home...but right now I need to give you guys an urgent update...

[maroo]

Ok...here's the deal. I really feel like I am on a roller coaster ride with Rachel...and that each time I give you guys information it changes...so bear with me. I am trying to keep you guys update because we really covet your prayers!

I think there was a little bit of a conspiracy this weekend to first get me to be ok with leaving town (even Rachel was in on saying how much fun I was going to have, etc) - she was FINE when I left. :( And even today they were short on giving me information. Until this afternoon when I finally asked someone point blank how Ra was doing.

So here is the update...

Literally one minute she is talking to all of us like the "old" Rachel and the next time I talk to her Mom she is back to being really confused and sometimes does not know where she is, etc.

The thought now is that Rachel has fluid on her brain that is causing all of her problems. They think that the fluid is what initially caused her to be confused and that the confusion continues when the fluid builds up. Then the fluid messed up her "sensors" for how to regulate that electrolytes in her body. This has started a cycle that is hard to break of her retraining LOTS of fluid (over 20 lbs of fluid at one point) - they give her medicine and she gets rid of some fluid, but then it builds up again.

So literally she goes from doing fine to then doing horribly and back. It is honestly horrible to watch because each time she gets better, we all think she will be fine.

At this point they don't think they can break the cycle. The additional fluid is being stored in her lungs and around her heart. Which is causing problems with her breathing (she already has poor lung function) and heart issues (heart racing to over 200 beats for way too long one night when I was there).

I am missing a LOT of information. I wish I could be there to gain information as I sit with them. But it is too hard for Ra's Mom to deliver information right there while Ra is listening. So I don't know how they know this information. Or what they are doing to fix it. Or how long they think this cycle can continue to support her life.

I am still at Magic Meets. I had a GREAT time today and tried not to let this worry me too much. My flight leaves tomorrow mid-afternoon and the way it works out, I can't get out much earlier anyway...so I am going to stick to my plans and won't be home until Sunday night.

There was a point this afternoon that I entertained leaving today. But even my pastor said I should stay...but also said I needed to get to the hospital as soon as possible on Sunday night. :sad1:

I am glad I came. This has been a great break from the "real world" that will probably hit me when I get back.

Tomorrow is Hershey Park. I have had a great time meeting Jen (jenb1023) and her family and we are all going to be headed to Hershey in the morning.

When I get home I will definitely update you guys on Magic Meets and try to keep you better posted about how Rachel is doing.

[TarzansKat]

Maroo, thank you for the update. What a horrible, vicious cycle this is for Rachel. It just...it just doesn't seem fair. I...sometimes I don't have words, and all I can hope is that my prayers, and the prayers of all your readers here will help Rachel and her family.

I'm glad you're having a good time! You need this, and when you get back, you'll be happy, and rested, and able to tackle whatever you need to because you are MAROO!!!! I have faith in you, my dear. :hug:

[StefaniLyn]

I can't imagine how diffficult is must be for you to not be with Rachel right now. We continue to pray for her recovery and pray that her doctors have the knowledge to diagnose and treat her illness.

I am however, happy to hear that you are trying hard to have a good time as a celebrity at the MagicMeets - it's a once in a lifetime kinda thing and you need and deserve to enjoy it. Wishing you safe travels tomorrow afternoon. Please keep us updated on Rachel.

[MomTo4+more]

Continuing to pray. I don't know what more to say, but I am praying.

[Matt1026]

We are praying for you and Rachel and her family!

[KathyRN137]

...Continuing to send prayers... :grouphug:


Kathy

[VroomVroomLightning]

Rachel and her family and you are in my constant prayers. :hug:

[shannn]

I continue to pray as well. I know how difficult this is for you, but please take comfort in the fact that Rachel is excited for you to be at Magic Meets and that she will be thrilled to hear all about it. I pray for Rachel & her family, for you, and for Rachel's medical team. :grouphug:

[llurgy]

Praying for your dear friend Rachel :(

So excited that you have had such a blast this weekend. Enjoy Hersheys, we had a good time drooling when we went there with Becca 0-blob years ago, I love the Hershey store

[Sandy321]

Maroo - I'm following you on twitter! LOVE your twitpics - I'm angelmum3 btw!

continued prayers for Joyce and Rachel -

[maroo]

Sunday Update

Rachel has had an OK day today, I think. I am not sure until I see her myself, though...honestly. I will know for sure when I see her with my two eyes!

Her Mom called today and said that the head CT is what showed the fluid and what they are going to do is first give her something to get rid of the fluid and if that doesn't work, then they will do a needle guided biopsy on the fluid on Monday or Tuesday. They may even do it today...but I highly doubt it...nothing happens on Sunday's at the hospital. I think it is most likely something they will do tomorrow.

Traveling is going ok. I just got to my layover, though and it looks like I may get stuck? The flight to Jackson, MS that was supposed to leave 2 hours ago has yet to leave. Not a great sign.

I completely enjoyed Magic Meets and enjoyed getting to hang out with Jen and her family the most! I am working on my Magic Meets TR, which will be forthcoming...I am trying to take my notes so I don't forget anything as being there for Ra and her Mom will come first once I get back.

I am glad some of you guys have found me on Twitter! I will get back to answering everyone one of your posts when I get back! I have been lax on that since Ra has been sick. :(

Thank you so very much for your prayers, emails, PM's, and calls - they mean so much to me!

[Matt1026]

Welcome Back Home!!! I am glad you had a good trip. I know you are very anxious to get home and the delays in your flight can not be helping that any. Just wanted to let you know that we are praying for safe travel for you home and for Rachel!!!

[VroomVroomLightning]

I have been checking and waiting for an update. Sorry about your flight delays. That does not sound fun at all! Glad you had fun at Magic Meets. I might have to try that somtime. :thumbsup2 Rachel and her family are in my prayers.

[StefaniLyn]

Sunday Update

Rachel has had an OK day today, I think. I am not sure until I see her myself, though...honestly. I will know for sure when I see her with my two eyes!

Her Mom called today and said that the head CT is what showed the fluid and what they are going to do is first give her something to get rid of the fluid and if that doesn't work, then they will do a needle guided biopsy on the fluid on Monday or Tuesday. They may even do it today...but I highly doubt it...nothing happens on Sunday's at the hospital. I think it is most likely something they will do tomorrow.


Have they figured out why she has fluid yet? Or how to stop it?

Safe travels - thanks for the update!

[jenb1023]

Oh no! I hope you don't get stuck in Charlotte!

We had a great time meeting you and Muffin and hanging out and I had a great time at Magic Meets! I don't want to say too much since you are going to do a mini-TR. Make sure you only post flattering photos!

And, Mary is a celebrity! Deb Wills and Mike Scopa know her by name and hugged her more than once!

[All7OfUs]

Hey, My Celebrity Friend....

It's your humble friend from overseas.

Do hope you've made it home by now; getting stuck somewhere when you're tired and have a lot of stuff to get home to isn't ever very fun!

I'll try to call tonight my time.

Glad you had a wonderful time in PA, and can't wait to see your updates on our PTR!

[eyor44]

Will continue to pray for Rachel. I hope you got home safely. We had some rather strong storms this afternoon that were headed up to Jackson. Perhaps that is what the delay was.

Be safe and take care of yourself also.

[maroo]

I am home!!!

I don't have long...because I need to unpack and get in bed so I can function at work tomorrow.

Rachel and her Mom both sounded good tonight on the phone and want me to come see them in the morning instead of tonight (which is probably good for me, too) so I will go over there during my lunch hour and try to get some more info on how she is doing.

But for now I can only go on what I know...which sounds like she is stable but still at a critical stage. Someone actually called me tonight and asked me if she had gone home yet...so there is a lot of misinformation and assumptions that she is better. She is sounding better, but what is causing her symptoms has not been fixed yet. And it is like a yo-yo...one minute I call and am afraid I won't make it home in time to even see her and the next I am talking to her on the phone and she sounds better than I have heard her in weeks. (But then she started talking about who knows what?)

Please keep praying for them and the doctors that are taking care Ra.

[MomTo4+more]

I will keep praying. Glad you are getting some rest tonight!

[jenb1023]

Hey there - Hope you got some rest last night! Still praying! Keep us posted!

[Matt1026]

Glad you are home! Please share with Rachel and her family that we are still praying for them!!!

[that's nice]

Still thinking of you and Rachel.

Glad to hear you made it home. Hope you had a great time at Magic Meets!:wizard:

[If U Had Wings]

Still praying and sending all my best wishes for Rachel. Hope things turn around for the better soon.

[eyor44]

So glad you made it home safely.

Praying that Rachel is doing well this morning and that you got some rest last night.

[maroo]

Monday Update

The rollercoaster continues...

Get this. They are sending her home today. On strict instructions and to bring her back if anything happens. She gets to go home because they trust her Mom to bring her back if she needs to...and they will be sending her home with many of the same things she was using in the hospital.

Here is what happened. On Saturday they tried a different diuretic to get the fluid off of her lungs and heart and out of her head and that finally worked. :banana: :banana: :banana: But they can't give her any more or it will "overcorrect" and cause another problem.

So, for now, she is sitting up in bed. Still confused, but using the computer and talking on the phone, and she wants to go home!


So...that left me with the question (and believe me, I asked the doctor myself - thankful I was in the room when they came)...so exactly what caused all of this?

Here is the theory. (They actually have no solid answers to this.) The low sodium was the cause of the problems with the confusion. In an effort to fix it, they overloaded her with fluids. A lot. They kept saying it would "go down on it's own" but it didn't and almost killed her. That caused all of the problems with the heart and lungs that were so critical.

They still don't know what caused the low sodium? :confused3 Was it gradual? Was it a change in medicine that happened the week before? Who knows. But they will be closely watching that in the future.

I am not breaking out the champaign (spelling??) yet. I will be more convinced if I see that she has been doing well for a few days...since this roller coaster ride has been going for almost 2 weeks now.

I am going to go stay with them for a few days until we can get some sort of schedule of people to help her (both hired and volunteer, probably).

[StefaniLyn]

:banana::banana::banana:

that's what I have to say about that.

Their explanation sounds reasonable. Hopefully that means it WON'T happen again. Have fun taking care of Rachel! Give her hugs :grouphug: from Wisconsin!

[jenb1023]

Woo-hoo - Rachel got to go home!!!
I wish they had more/better answers for you but I am so glad she got to go home.

[eyor44]

YAY! for Rachel going home!:cool1:

Watch her close Maroo (I know you will) and give her hugs from all of us. "Our" Rachel needs to get to the World.

[All7OfUs]

We are all jumping for joy, but cautiously, as you say. Sounds like the next few days will tell.

You are such a trooper to spend a few nights with them, and help them work out logistics for them!! What a blessing you are!

Get the rest you need, too, my friend :)

[that's nice]

Thats great news that Rachel gets to go home.

I'm sure she will be happier at home!

[Sandy321]

Know that you and Rachel and Joyce have been in my thoughts and prayers!!

I've been following your twitter updates Maroo!! :goodvibes

[5dwarves]

I am so glad to hear that things are making a turn for the better for Rachel. All the more reason to plan a memorable trip! I am looking forward to hearing more good news on her recovery!

~Elisa

[eyor44]

Praying Rachel had a good night at home. :goodvibes

[maroo]

Tuesday Update

Rachel is home and we are glad she is home.

But please pray for her and all of us. Rachel is really, really frustrated. She did not sleep hardly at all last night. Long night. They can't give her anything because of her pulmonary function.

She is miserable.

Thank you so much for continuing to pray for her.

[All7OfUs]

I imagine it's frustrating for everyone. I so wish they could help her more!

Hang in there!

[TarzansKat]

Thank goodness for a piece of good news. At least she is home, which is probably more comforting to her. I will continue to pray for Rachel and her family that she gets better soon. :goodvibes

[eyor44]

Praying that Rachel had a better night last night. :hug:

[Matt1026]

We will continue to pray for Rachel, her family and you! I know it has to be so hard on her.

[Sandy321]

Maroo continuing to lift Rachel up in prayer!!

:grouphug:

[maroo]

Wednesday Update

It has been a long day. She is basically the same as the last update.

We did all get out today and run to the store to get her an iPhone and she was excited about that, but she sorta "tanked" in the car - got all pale and is now resting again. Maybe we did a little too much on that first outing?

I am back at work tomorrow, so I should be able to update again then.

[TarzansKat]

Well, I'm glad to hear she was excited about the IPhone. I'm sure that going out took it out of her, but hopefully she'll get some rest and feel better. :hug: for Maroo and Rachel!

[JPFamilyMom]

Continued prayers, glad she is home, I am sorry to say I have avoided reading your PTR for a few days -I get so emotional every time I read (I don't even know you or her and I had tears running down my face when I was praying at church over the weekend), but I have continued to pray and hope for the best.

Glad she liked her new phone.:):thumbsup2 That gives me happy thoughts now.

How are you holding up?

[jenb1023]

I am so glad Rachel got to go out and finally got her iPhone! Hoping that you all will get a good night's rest tonight and will feel better tomorrow!

[maroo]

Continued prayers, glad she is home, I am sorry to say I have avoided reading your PTR for a few days -I get so emotional every time I read (I don't even know you or her and I had tears running down my face when I was praying at church over the weekend), but I have continued to pray and hope for the best.

Glad she liked her new phone.:):thumbsup2 That gives me happy thoughts now.

How are you holding up?

I cried reading this. :sad1:

:grouphug:

I am ok. Better than everyone else around here, so I should say good.

But I am really, really tired. It is all catching up with me. I had a day off today, but really didn't get to rest at all...I am looking forward to getting to work so that I can sit down for a few hours.

[maroo]

Well, I'm glad to hear she was excited about the IPhone. I'm sure that going out took it out of her, but hopefully she'll get some rest and feel better. :hug: for Maroo and Rachel!

She was really excited about her iPhone! :)

I am so glad Rachel got to go out and finally got her iPhone! Hoping that you all will get a good night's rest tonight and will feel better tomorrow!

:) I hope so, too!! :)

[eyor44]

Praying that Rachel, Mom and Maroo all had a better night last night.

[Matt1026]

How exciting an IPhone. I know she will get alot of enjoyment from that. Please let her know that alot of people are lifting her up in prayer!!!! I hope you are able to get some rest too!!! Take Care.

[maroo]

Praying that Rachel, Mom and Maroo all had a better night last night.

unfortuntately it was not a good night. I slept most of the night, but her Mom did not. They are going to the dr today to see if they get something stronger for her pain and insomnia. Hopefully they will be able to give her something despite her respiratory status.

How exciting an IPhone. I know she will get alot of enjoyment from that. Please let her know that alot of people are lifting her up in prayer!!!! I hope you are able to get some rest too!!! Take Care.

she is enjoying her iPhone!

And she is so grateful for the prayers.

I was on the phone with All7ofUs (Liesa) the other day and Ra said specifically to tell her thanks for praying. :hug: I am not sure that Ra knows quite how many people are praying for her each day.

We are very grateful!!

I will try to update later today. I have a TON of work to do today, so I gotta get off here... :)

[eyor44]

:grouphug:

[Sandy321]

Maroo :grouphug: The great state of IL is chiming in with prayers for Rachel, Joyce - and you too!!

Iphone - does she need any help with apps? I read there are a few iphone Disney apps people talk about on the Theme Park Board - my DS favorite app is the Star Wars Light Saber one (?? go figure! but - if we want to stress the force is with her!!) :hippie:

[maroo]

Thursday Update

I feel for the first time...(well, ok, maybe I have felt this before)...that we have turned a corner. She is doing much better today. More like normal.

I have not heard her say anything that has been real "inappropriate" (and by that I mean saying something random or not being able to answer a question).

The real test, I think, is going to be tonight. They DID get some "real" medicine to try to help her sleep and she is going to try it tonight.

Please pray that it helps her sleep!! So her Mom can get a full night sleep (and me, too, as I think I have convinced her Mom to let me take night duty for the night).

Thank you all so much for your prayers!

[that's nice]

Once again I'm glad to hear that Rachel is doing better.:thumbsup2 As a PP said, and I'm sure you know, there must be tons of Disney APS for the iPhone.:goodvibes

[StefaniLyn]

Praying for peace for Rachel, her family, and you too Maroo. Aside from the exhaustion that lack of sleep can cause, the mental exhaustion you all must be experiencing right now is incredible. I hope the meds work their magic and allow Rachel to rest.

I have personally witnessed the power that prayers can have. Were it not for the incredible support and hundreds, maybe even thousands, of people praying for Bella, she would not be doing as well as she is today. Her progress continues to astonish all of her doctors, and I can only attribute it to the many prayers being said on her behalf every day.

The same will hold true for Rachel. These prayers will be answered and Rachel will return to her previous condition. She continues to be in my prayers daily. God Bless you for sharing Rachel's story with us - she has touched so many lives thanks to you.

[Sandy321]

Maroo :hug: It hasnt been that long since my own son was in a hospital and saying really really "random" things! I know how hard not knowing what tomorrow brings - and how strongly we cling to our faith!!

continued prayers!

[TarzansKat]

Thank God for this positive turn! :goodvibes

[MomTo4+more]

I hope last night was peaceful for everyone. I am still thinking of and praying for Rachel.

[kdzbear]

I hope everyone was able to get some sleep last night. We are praying for Rachel's health and recovery. Take care of yourself! :grouphug:

[Matt1026]

WOW! What an encouragement these boards have been to me today. I am glad to hear the good news about Rachel. We are still praying for Rachel, her family and you. We will pray specificaly for a good nights rest for all. :grouphug:

[If U Had Wings]

Still sending prayers her way. I'm goad that there have been some postive signs!

[maroo]

When I left their house this morning everyone was SLEEPING! :banana: :banana: :banana:

I have no idea what happened between the hours of 11 PM and 6 AM, though. :confused3 But it was good that they were both sleeping this morning.

Once I get an update, I will let you guys know...


In the meantime...

You guys know I love all of these Wish Families and they ALL are so special and have been through so much.

But there is one that I am hoping you guys can help me with...

Her name is Mya and she is not doing well - her tumor continues to grow despite the chemo they are giving her. Her doctors felt it would be a good idea to move her wish trip up from October and they went in July.

The thing that is getting me right now, though, is that she does not seem to have much support online from folks on the DIS. Many of the kids I follow get hundreds of "hits" each time they post on their blogs and I am actually the only one that has posted on Mya's today. They really need some encouragement and I hope that we can generate some for them.

They just got back from their wish trip and from all accounts it was wonderful!

If you have time and would like to post on her guestbook or follow along and pray for them, I would really appreciate it.

Here is the link...

http://www.caringbridge.org/visit/myaroseharris

Everyone does have to supply an email address and you may even have to register? But it is well worth it...as we have lots of families (even possibly Rachel in the future) that will have a Caring Bridge site.

And feel free to tell her you are posting from the DIS.

[maroo]

THREE WEEKS!!!!!!!

Three weeks! Three weeks!

I will be in Disney World three weeks from tonight! :yay:

With everything going on, it has certainly caught me off guard a little!



First...I have an ANNOUNCEMENT!


*drum roll please!*







I changed resorts. :eek: :scared1: :eek: :scared1: Yep. I changed resorts!

And I didn't even tell the DIS. :laughing:

We will now be staying at Old Key West!

I was concerned about the lack of two full beds in our SSR Studio, so I took the plunge and called Disney one afternoon when I was sitting in the ICU with nothing to do but pray, still be worried, and call Disney. They were glad to switch us! Question: Now what do I do to make sure ME knows to take me to OKW??? :confused3 :surfweb:



And I realize that I have not really gone into the day-by-day plans for our trip. So let me give you an idea of our plans in the next week or so here goes nothing!

Saturday, September 5th

Park: Epcot
Breakfast: In room?
Lunch: Sunshine Seasons (around 11:00)
Snack: Somewhere in World Showcase
Dinner: Teppan Edo (around 6:00)

Our special plans for today include meeting a DISer for lunch at Sunshine Seasons. tinytreasures and her husband will be meeting Sharon and I for lunch! I figure there are LOTS of choices here and it will be great for a first meal at Disney!

*Quick aside...there are really very few "must dos" on this trip!*

Hope to Do: Soarin' (at least once), relax around the World Showcase

[maroo]

Once again I'm glad to hear that Rachel is doing better.:thumbsup2 As a PP said, and I'm sure you know, there must be tons of Disney APS for the iPhone.:goodvibes

This is true! She has found several apps already...I need to find some Disney apps for ME! :) We also need to upload all of her songs today. :)

Praying for peace for Rachel, her family, and you too Maroo. Aside from the exhaustion that lack of sleep can cause, the mental exhaustion you all must be experiencing right now is incredible. I hope the meds work their magic and allow Rachel to rest.

I have personally witnessed the power that prayers can have. Were it not for the incredible support and hundreds, maybe even thousands, of people praying for Bella, she would not be doing as well as she is today. Her progress continues to astonish all of her doctors, and I can only attribute it to the many prayers being said on her behalf every day.

The same will hold true for Rachel. These prayers will be answered and Rachel will return to her previous condition. She continues to be in my prayers daily. God Bless you for sharing Rachel's story with us - she has touched so many lives thanks to you.

There is no doubt that the prayers have made such a difference for her! I have seen it now and in the past and I have no doubt!

I am so glad I got to share her story with you guys! :thumbsup2

Maroo :hug: It hasnt been that long since my own son was in a hospital and saying really really "random" things! I know how hard not knowing what tomorrow brings - and how strongly we cling to our faith!!

continued prayers!

Wow...I had no idea you have already been through this mess! I hope to have good news for all of us in a few house when I call them at lunch!

Thank God for this positive turn! :goodvibes

::yes::

I hope last night was peaceful for everyone. I am still thinking of and praying for Rachel.

Thank you so much for praying!!!!

I hope everyone was able to get some sleep last night. We are praying for Rachel's health and recovery. Take care of yourself! :grouphug:

I slept GREAT. First night to sleep all night long in quite a while. I even went into work a little bit late to catch that last little bit of sleep to make a whole night!

WOW! What an encouragement these boards have been to me today. I am glad to hear the good news about Rachel. We are still praying for Rachel, her family and you. We will pray specificaly for a good nights rest for all. :grouphug:

I am so glad these have been an encouragement to you! :hug: You deserve it!

Still sending prayers her way. I'm glad that there have been some postive signs!

Me, too!!!! Thank you so much for praying! :)