Becca's Wish Trip........Update:September 2011.....Photo's....Sorta :)

[purplepeg]

have a great time visiting with family. Glad Becca's doing well

 

[jenb1023]

Hey Mandy - Glad you updated your thread and that Becca is doing well. I know a lot of people have been thinking about you guys especially since little Noah. to all of you! Come back when you have the time - family always comes first!

 

[Clutterbug]

So glad to hear that Becca is doing well!

Thanks so much for the quick update and enjoy your family time!!

 

[tinytreasures]

I just come to check on her
glad she is doing better

 

[miprender]

That is so great that she is recovering. My DD6 sometimes asks to see how she is doing so I am glad that you were able to update.

Your family is in our prayers.

 

[teresajoy]

Hi all,
Becca is slowly getting back to normal, though it is going to be a long hard journey with her stamina/O2 issues, she can now walk about 100feet without becoming too breathless. Other than her energy she has virtually recovered fully from the brain abscess and the resulting surgery.
We have had loads of follow up appointments at the hospital and she has thankfully been discharged from re-hab except for one more rehab doctors follow up in December. The brain surgeon discharged her last week with a clean bill of head and s did the ophomology dept.
The only doctor we shall carry on seeing is Infectious diseases because it seems that she will be on antibiotics 25/7 - 365 days a year for the rest of her life, that is the only bummer in this, but it beats going through all that again. Hopefully the antibiotics will prevent another abscess.....hopefully!!

We have ha family visiting from England, first my mum, brother and wife and now Davids mum and soon his niece also, so from May till nearly the end of August we have been a-visiting, its been sooooo good, especially for Becca.
Because of the visitors I havent been on the boards, It was Noah that bought me out of lurkdom .
I shall be going back to lurkdom until I can give the boards the time they deserve and my undivided attention and then hopefully I will be able to start that TR I owe everyone. My undivided attention is not going to happen until our visitors have gone back to England. It is so nice when our families visit, we dont want to waste a minute of it.

See you all in August
Love
Mandy

I'm glad to hear Becca is doing well, and that you have had family visiting!! That must be so nice for you all!!! Please take care!

 

[erinch]

Hi Mandy, Becca, and family---
I just spent the last couple of hours reading your entire PTR---when I actually thought I was going to be starting mine.

Prayers ascend, belatedly, and currently.

Our family leaves this Friday for a couple of weeks, both at WDW and also at Universal, and a day at Sea World. Is there anything Becca would like from any of those places?

Our DS, now 21, was born with a depressed immune system, life-threatening massive food allergies, and uncontrollable asthma. He is now 21, and doing much better, but we almost lost him more than 20 times to anaphylaxsis or respiratory failure. I remember when his pulse ox was below 20; they couldn't get it up; and the helicopters were grounded due to a blizzard. It was a little shabby Eeyore that kept him going through his many procedures, and that we sent with him on the ambulance on that ride, when there wasn't room for us.

So if there is anying which would be lifegiving for Becca right now, please let us know!

Blessings,
Erin Cox-Holmes

 

[llurgy]

Hi Mandy, Becca, and family---
I just spent the last couple of hours reading your entire PTR---when I actually thought I was going to be starting mine.

Prayers ascend, belatedly, and currently.

Our family leaves this Friday for a couple of weeks, both at WDW and also at Universal, and a day at Sea World. Is there anything Becca would like from any of those places?

Our DS, now 21, was born with a depressed immune system, life-threatening massive food allergies, and uncontrollable asthma. He is now 21, and doing much better, but we almost lost him more than 20 times to anaphylaxsis or respiratory failure. I remember when his pulse ox was below 20; they couldn't get it up; and the helicopters were grounded due to a blizzard. It was a little shabby Eeyore that kept him going through his many procedures, and that we sent with him on the ambulance on that ride, when there wasn't room for us.

So if there is anying which would be lifegiving for Becca right now, please let us know!

Blessings,
Erin Cox-Holmes

Sorry, I didnt see this message until just now So shameful not seeing a message on my own thread

Thank you so much for your kind offer. You just go enjoy yourselves and have the most brilliant time ever!!! Becca is not in need of anything, she has her health and even though it is not that good, it is as good as it it going to get
She still battles with chronic fatigue and low oxygen but you know how kids are, whatever you throw at them they just seem to take it? Such is the grace of a child

I hope you are having a really great time, Becca just adored the Dolphins at seaworld!

Gotta go mingle with the family now, so nice to have our family here, life is good just now
Love
Mandy

 

[llurgy]

Guess what!!!???!!!
I think that I am actually going to start our Trip Report!

It is a year tomorrow since we set off on our Make A Wish trip to Disney World! Can you believe it? A full year tomorrow!

So, yes, I will either post part one of Day one, tonight or tomorrow, depending on if I get dragged away to do something else or not.

I apologize in advance for bits missed, lost names, forgetfulness and all of those things that come from waiting all of this time to start a report.

I took no notes whilst we were away and we all know what happened a week after we got home. It funny haw something like that can make such a magical vacation disappear into the far off realms of minutiae.
So, there are going to be missing bits, days may even get mixed up along the way, but well! A mixed up trip report is better than no trip report isnt it?

Please say yes, otherwise I am not doing it

Love
Mandy

 

[maroo]

Oh!!! I just can not wait!!!!!!!!!!!!!!!!!!!!!!!!!

Can I announce this one the Wish Trippers thread and get some of the new folks to join us over here?!?

I am so excited!

 

[maroo]

PS...

I said YES in 5 minutes.

That is pretty good, I think. A resounding YES!!!

 

[llurgy]

Oh!!! I just can not wait!!!!!!!!!!!!!!!!!!!!!!!!!

Can I announce this one the Wish Trippers thread and get some of the new folks to join us over here?!?

I am so excited!

You can announce it wherever and to whomever you want to Mary

Mandy

 

[Tnkrbelle565]

I'm still in!!!! How is Becca????

 

[llurgy]

I'm still in!!!! How is Becca????

Becca is doing well.
She still cant do things that take a lot of energy, that still needs building up from before the Brain thing, but she wasnt all that energetic before so

She still has to take antibiotics and probably will for life. She has been discharged except for one follow up from Re-Hab and yearly visits with infectious disease peoples.
We still have to go see our specialist Dr in Yale. He is the one that manages her underlying disease. It's such a trek to get there for something that is an hour long, LOL....We are so bad not wanting to go but we should really make the effort.
It would only be a check-up because unless something obvious happens with her lungs check-ups are just about all they can do. There are no fixes.

So we are happy enough being home. It is still nightmarish thinking back to last year and spending 3 months in hospital. We are just grateful for life really, just taking it easy and relaxing and vegging out.

Mandy

 

[HeatherSue]

Mandy! I'm so glad to see you back on the boards! I think of you and Becca often. I'm so glad you're going to write a trip report! Don't worry about forgetting stuff. What I always say is- if you forget something, make up something better to replace it! But, you didn't hear that from me.

 

[llurgy]

Ok then, Part One of Day One coming up.

 

[eyor44]

Yes, Yes, Yes

We definitly want to hear all about your trip. and pics too! Oh, I can't wait. How wonderful to hear from you again. and that Becca is doing well.

 

[llurgy]

Day One: Part One

I apologize in advance for the lack of photo’s until the airport, it kinda got really hectic because of our snow.

The Limo (standard large sedan small one) arrived on time at around 8.15am.

One problem.......He couldn’t get up our drive! He must have been ten minutes with wheels spinning trying to get up, both forwards and in reverse.

Obviously there was only one thing for it, if the Limo couldn’t get to us then we would have to go to the Limo. Bearing in mind there was about 6 or 7 inches of snow on the ground and it was freezing in minus degrees - If I recall correctly it was aroung -5f, so it was really cold to go tromping through the snow.
So.......You can imagine how stupid we all looked tramping up and down our +150ft drive in deep snow with suitcases, a wheelchair, Oxygen machine, and a Bic
The limo driver did help with the schlepping, he was funny, kept on playing hell up with the limo company for only buying rear wheel drive cars and then expecting them to drive in 6 foot deep snow

Anyways, we set off and had a pleasant non eventful trip to the airport just over an 80 miles away. We had never been to this airport before, it was so tiny and cute
We checked in, very fast and hassle free. The oxygen concentrator papers were looked at and then given back. They told us to make sure we gave them to the flight crew at the gate before boarding. They did not charge for the baggage which was really nice of them.

Security was just a one gate thing and there were only 2 people in front of us waiting. They didn’t even have a special thing for the wheelchair to go through, it was very casual and very pleasant. They made a fuss of Bic and made her laugh whilst they searched her chair for wild and dangerous animals.

We arrived at the Gate around 10am (airport was really empty) which was conveniently next to a small snack shop so we got some bottles of water and pop to take on the plane.Gave the paperwork to the person on the gate and was told she would have to show the Captain to get the all clear to travel with the concentrator and then would get our paperwork back to us. Got the baggage slip for the wheelchair. Fooled with Bic saying she was going in the hold with the chair

And we are off!!! Plane took off on time at just before 11am, had to stow the Oxygen concentrator until after take off. Pulled it out as soon as we leveled off and didn’t wait for the seatbelt light to go off. Sorry, but it seems that they keep the seatbelt light on until they have finished the snack/drinks rounds these days and we would have been waiting forever. The concentrator gave a couple of beeps on the way out there but we just turned the volume up to push out an higher concentration of oxygen to compensate.

Plane landed in Florida at touch early. We got off the plane expecting heat. Guess what, it was freezing. It was also windy, but it was sunny too so that took the edge off a little. Apparently we arrived in Florida just in time for some all time low temps, frost in the mornings and everything. It was OK because we were already dressed appropriately

We met our greeter, sorry, I cannot for the life of me remember her name, it was a year ago and I didn’t take notes whilst we were there.

She made a big fuss of Bic and took us to get our van. Twas a nice van. we took our GPS with us so we got around fine whilst down there. Took photo’s of the few scratches and tiny dings that were already on the van so that we wouldn’t get charged for anything once we took it back. Said goodbye to our greeter and set off for Give Kids The World!!!

 

[Applemomma]

Yes! Yes! Yes!

I was actually thinking about Becca yesterday. Glad to hear she's doing well.

 

[HeatherSue]

How dare you make Becca think she was going in the cargo hold!

Tessa loves Becca's cheetah outfit! I love that pretty computer!

We were at Disney last January/February and I remember how cold it was!! It was bone chilling cold!