Gloria Joy's premature (??) WDW MAW PTR

[brookerene]

I am sure wishing for pixie dust to brighten Glo's day and week! I bet some is coming her way!
I wish now that I had made the res for 1900 Park Faire! I looks like sooo much fun! I know Glo will have a great time!

 

[blessedmom4]

It's been a rough day. Glo's been increasingly sick and the dr's don't know why. I was told tonight that if she doesn't show improvement by Thursday they want to admit her for a complete head to toe work up. They also said they want to consult Hem/Onc. if her fevers continue until then.
Her lungs sound pretty bad right now and her MRI on Monday may not happen if we can't get her lungs clear enough to sedate.
On a good note...we were asked if we'd like to participate in the Big Give!! I'm so excited, the kids and I could use some good surprises!!!

Praying today has been a MUCH better day for Glo! Stay WARM!!! Yikes!

 

[mommy2mrb]

Hope Glo's day was better, sending lots of pixie dust and prayers!!!!

 

[4monkeys]

Just catching up! You have a beautiful family! So glad that Glo is getting her wish.

I am sorry that she isn't feeling well! I certainly hope they can figure it out quickly without having to admit her!

Congrats on the Big Give! We had a PIXIE DUST give....AND IT WAS AMAZING. I have no idea how they out do that!

As far as ADR's, we did one and had enough money in our expense check to cover it (and a few more if we had chosen to!!)

 

[Glo's wish]

I am sure wishing for pixie dust to brighten Glo's day and week! I bet some is coming her way!
I wish now that I had made the res for 1900 Park Faire! I looks like sooo much fun! I know Glo will have a great time!

I am unbelievably excited that Glo gets to experience this!

Praying today has been a MUCH better day for Glo! Stay WARM!!! Yikes!

Today has brought some minor improvement. We see her surgeon tomorrow and recheck with the pediatrician so we will see what the plan is. Unfortunately we have another snow day tomorrow so these appts will be a family outing! Thankfully though this is one less missed school day for Gloria!

Hope Glo's day was better, sending lots of pixie dust and prayers!!!!

Thank you so much for the prayers! They make all the difference! It was a bit better today.

 

[Glo's wish]

Just catching up! You have a beautiful family! So glad that Glo is getting her wish.

I am sorry that she isn't feeling well! I certainly hope they can figure it out quickly without having to admit her!

Congrats on the Big Give! We had a PIXIE DUST give....AND IT WAS AMAZING. I have no idea how they out do that!

As far as ADR's, we did one and had enough money in our expense check to cover it (and a few more if we had chosen to!!)

Thanks for stopping by Amy. I really hope we get answers soon to without an admit before the scheduled one on Sunday! Hopefully if nothing else that MRI will rule out some scary possibilities.
It's good to know about the ADR's. I know I was told the expense check would cover it plus gas, snacks, ect.. but with nothing to fall back on in case there isn't enough makes it scary. That's one part of the trip I wish they were more vocal about so families could worry less. Maybe it's just me being a worry wart?

 

[mommy2mrb]

happy it was a "bit" better of a day.....prayers and pixie dust still heading her way that tomorrow is even better

 

[Mom2Miracles]

I hope she is feeling better, poor thing. I must have missed it along the way, but when is her wish trip? And YAY on being in the Big Give. From what i've seen, it looks amazing and i'm sure your daughter will love the attention.

 

[Glo's wish]

I hope she is feeling better, poor thing. I must have missed it along the way, but when is her wish trip? And YAY on being in the Big Give. From what i've seen, it looks amazing and i'm sure your daughter will love the attention.

Thanks. I think we are at least heading in the right direction as the fever is pretty much staying away. We fly out on Feb. 27th! After months of waiting with no word, it was quite the shock to hear we were leaving in a month!!!!

 

[blessedmom4]

Thanks. I think we are at least heading in the right direction as the fever is pretty much staying away. We fly out on Feb. 27th! After months of waiting with no word, it was quite the shock to hear we were leaving in a month!!!!

That is awesome news, I am happy the fever is GONE ...Praying it stays away! You have a lot to do in a short time, it is so EXCITING!!!!

 

[mommy2mrb]

oh good, happy her fever is gone.....hope they can get your some answers today

 

[Mom2Miracles]

What great news that her fevers are gone and that she seems to be on the right path.

 

[Glo's wish]

Gloria had a much better day yesterday and was even able to go to school for half a day!!! Glo's pediatrician also told us yesterday that despite Glo's lungs still sound wheezey, she feels we should go ahead with tomorrows admit and Monday's sedation and brain MRI. Here's praying for answers we can live with!!!

 

[jj0plin]

Gloria had a much better day yesterday and was even able to go to school for half a day!!! Glo's pediatrician also told us yesterday that despite Glo's lungs still sound wheezey, she feels we should go ahead with tomorrows admit and Monday's sedation and brain MRI. Here's praying for answers we can live with!!!

That is awesome news!!! I hope for nothing but incredible news!

 

[Glo's wish]

That is awesome news!!! I hope for nothing but incredible news!

Thanks Christy!!!

 

[jj0plin]

Thanks Christy!!!

Wow, I said news twice... can you tell I've been up all night?

 

[Glo's wish]

Wow, I said news twice... can you tell I've been up all night?

Haha!

 

[mommy2mrb]

Gloria had a much better day yesterday and was even able to go to school for half a day!!! Glo's pediatrician also told us yesterday that despite Glo's lungs still sound wheezey, she feels we should go ahead with tomorrows admit and Monday's sedation and brain MRI. Here's praying for answers we can live with!!!

So happy she is feeling better....will keep her in our prayers that Monday's news will be great! sending BIG DOSE of pixie dust and too!

 

[blessedmom4]

Gloria had a much better day yesterday and was even able to go to school for half a day!!! Glo's pediatrician also told us yesterday that despite Glo's lungs still sound wheezey, she feels we should go ahead with tomorrows admit and Monday's sedation and brain MRI. Here's praying for answers we can live with!!!

Celebrating great news! I will be praying things go well for the sedation and MRI.

 

[lawblond7]

First off, have any single mom's done the MAW/WDW trip that might have suggestions for me??
Second, Glo is on 13 (liquid) meds, tube fed formula, and has many medical appliances(nebulizer, percussive vest, feeding pump, pulse ox) wheelchair, and diapers. I was told I should "carry on" her necessities so as not to chance losing them. Will they let me take that much as a carry on?? Obviously I do not fly much!!!
any and ALL suggestions are welcome!!!

Just catching this threat - we just got back from our MAW trip and GKTW.

I am a single mom of 3 boys ALL chronically ill with a mitochondrial disease (all wish children 17, 13 & 13 - 2 tube fed) and MAW here in Northern Virginia REQUIRED that I have 2 adults go on the trip. Since my partner Roger could not get off to go (plus he is not a "Disney person" although he has agreed to go with us maybe in November or Next January for a few days) as he will go on the cruise with us this summer for Cole's Wish - so my mom came. I flew too florida alone as she lives in southern Florida. I generally drive to see her due to ALL the medical stuff I need BUT flying with the 3 boys was not too bad.

As for medications, I had an ENTIRE carry on suitcase on wheels (the largest size allowed for carry on) filled with medications for all 3 boys - let me put it this way there was NOTHING but medical supplies in this suitcase. I had 2 feeding pumps, 2 replacement g-tubes, g-tube extensions (a couple of pump bags - I packed the rest), 2 cans of formula (packed the rest), epi pen, lots of liquid meds, formula shaker, etc. I also had the convaid wheelchair - which I took to the plane and then gate checked. This was the best.

Our MAW organization offered to rent us the required medical equipment down there at their expense - BUT my boys like their little zevex pumps plus Clay is on a specialized formula that is VERY expensive. BUT this may be an option for the nebulizer and pulse ox machine and the feeding pump. They do this all the time at GKTW. Also, you may want to look into shipping the diapers and things like that which are light directly to GKTW before your arrival.

As for seeing Cinderella at Akershus she was there when we had breakfast there last Saturday (along with Belle, Ariel, Sleeping Beauty and Snow White) - see below which is Jake (wish Child and Cindy)

MAW a wish gave us a VERY generous amount for spending money. We had breakfast on Satuday at Akershus and dinner that night with friends at Crystal Palace. Those were our only 2 ADRs in Disney. We ate at the NASCAR grill at Universal. I think we spent more on food the first day than most of the rest of the trip BUT it was worth it AND I ended up having money left when we came home. Jake's wish was for a date with the princesses and he did that and more.

Your plans sound great so far.