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

[josabbimommy]

Hi all,
We are in the early stages of a M-A-W trip, maybe I shouldnt even be posting yet but I cant wait!
I am so excited for my Daughter! We have just be told today via a phone call that our 12 year old daughter Rebecca has qualified for a Wish.

We haven't a date yet, in fact we haven't even been assigned volunteers yet but we don't care, she has a WISH!

All this started only last week when I asked a question about certain booking dates for WDW on the planning forum. Becca has some disabilities and so we were wanting to go at the quietest part of the year so she wouldn't have to spend all of her precious energy waiting in lines. Several people suggested we try to get her a wish, I just pooh-poohed the idea as not being conceivable but after a neighbour suggested the same thing I thought well it cant hurt to try.
I filled out an online referral last Thursday night and I received a reply on Friday morning asking for more detailed info.
I sent more info and received a phone call on the following Monday saying that she had gotten through the pre-screening process and now it would be dependant on what information our Doctor supplied them with as far as qualifying.
They sent forms out for medical information release on Wednesday, they were filled in and sent back by yesterdays mail. They must have received it this morning, faxed it to our Doctor, he must have written his referral and faxed it straight back as we got a phone call this afternoon telling us that she had qualified for a Wish! Whew speedy or what??

It was the same way for us! Our lady filled the form out and sent it in and they called me the next day! They sure are quick in that department!

 

[josabbimommy]

What's the big give? And what's a dis boutique?

 

[dvc at last !]

I check this mail each day, and pray that all is well.
Take care.

 

[josabbimommy]

Thanks for the updates. I'm sorry to hear that she's still in the hospital. I know what it's like to spend months of your life in the hospital. It's hard. I'm new but I'll be a cheering section. Everyone needs a little motivation!

 

[llurgy]

Becca, Mandy and David,

I really can not even imagine how you have any shred of patience left. Where do you find your strength?

Great news that Becca has felt better today! I hope you get better and better every single day!

I have not forgotten about the pillow cases. I got a new batch of fabrics, and am really having the best time planning which colors to use, and which will be the most cheerful/ restful! Not sure how something can be both at the same time, but that's the way my mind works!

Hopefully there will be a package sent to Ohio next week. Is it best to send things to Mickey D's house? Or would it be better sent to the rehab unit? Please send me a message with the best address.

I've noticed the number of messages to this thread has slowed down a bit. I hope you know that you are still in tons of prayers. It would be very hard for anyone who's read your thread to forget that little ball of sunshine we now know as Bic.

God Bless, Best Wishes, Good Luck, and Stay Strong!

The pillowcases arrived today!!!! Becca loves them! She especially likes the Cat one in the pink and the black and the one with the fireworks on one end.
We will take pics later today, but suffice to say she loves them all, thanks so much for them

 

[llurgy]

Day 61 - Don't Push (April 7, 2009)

This morning when we arrived at the hospital, the night nurse commented on how well Bic was doing. This was confirmed when we entered the room. Bic was bright and bubbly and ready to go.

This all changed when she received her meds - about 20 ml pushed down her NJ tube. About half way through a slow push, Bic asked the nurse to stop. Her nausea and belly cramps had returned. This was a turning point. We asked that no more meds be pushed until we had talked with the rehabilitation doctor.

It took about an hour for Bic's belly to recover, but it did get better over the course of the morning. For therapy, Bic sat on the edge of the bed several times and for good periods of time. She complained a bit, mainly due to neck ache.

Mid morning, Bic was part of a photo shoot with Ansley the therapy dog. A professional photographer took pictures of Ansley, the speech therapist and Bic on the edge of her bed playing a game. If accepted, they will be used on a therapy dog calendar!

We had a chat with Bic's rehabilitation doctor about the problems with belly pains and established that meds would no longer be pushed. They are now going to be incorporated in her regular formula feeds and fed at a more sedate pace. We also talked about trying to accelerate Bic's desire to eat and agreed that cutting back on her TPN feed might accomplish this. The doctor explained that simply cutting the TPN out wasn't a good idea because it would cause a sugar crash, but they would reduce it over several days. There was also talk about possibly changing the NJ feeding tube back to a NG tube (i.e. back into the stomach) to reduce the direct loading on her small intestine. This would be deliberated more over next next week.

The doctor also put another spin on the possible cause of Bic's belly cramp problems - it could be psychological in that her anxiety could be causing some of the problems. This is certainly true because Bic is now terrified of doing anything physical for fear of causing the belly cramps and ruining another day or night.

This afternoon in PT, Bic was asked to walk a few feet from her bed to the wheelchair waiting for her at the door to her room. The walking frame was placed by the bed to help her. Bic was terrified and cried pitifully. She was afraid of the consequences having had a reasonable day to that point in time. After a lot of coaxing, she finally got off the edge of the bed, tears running down her face, and walked to the wheelchair. The therapist was there to give her support, but Bic managed to do it without any holding or propping up.

She then drove her wheelchair down to the speech therapist's office for a memory game. There were no smiles though all of this and it turned to tears again when she was asked to stand at the table for a short time. Again, there was lots of coaxing and encouragement to get her to stand, which she eventually did for 40 seconds. She complained that her belly was "gurging" as a result of all these body movements and also said that she had a headache.

Once back in the wheelchair, she went to OT in the gym. There she stayed in her wheelchair doing arm exercises.

On returning to her room for a half hour break, still in her chair, we had an appointment with the wheelchair store to discuss options for when Bic is discharged from the hospital. Bic was very unhappy about us leaving - she didn't want us to leave, so there were even more tears!

It was about three hours later that we got back to Bic's room to find her asleep. When she came round, she was a bit off, which is normal for when she is first coming round.

After a while, Bic was ready to have a little to eat - meatballs, then since it was getting late, prepared to go down to the gift shop for the visit that never happened this weekend. Bic complained a lot getting into the wheelchair, but we finally got moving. Tonight, she bought a small cuddly dog, then we headed back to the room. She complained of a "swishy" belly, which isn't as bad as a crampy belly. It just means it is unsettled. Once back in bed, she said that she had a headache, but wasn't thrilled about having Tylenol pushed through her feeding tube, so passed on this option. She wasn't impressed with the chewable alternative of bubblegum flavor either!

The headache passed fairly quickly on its own leaving only one irritation for Bic to worry about - a badly leaking feeding tube that gets worse by the day!

 

[jessica52877]

I also wanted to say that I am still reading and praying every day! I appreciate the updates!

 

[Khalana]

Still thinking about you guys and praying for you too!

 

[my2disneyboys]

Hello! What a wonderful, strong, and loving family you have! I have just read through the entire trip report- which has become so much more.... and my heart just bursts for all of you. I have two little boys, and your story here truly makes me appreciate everything just a little bit more. We are going to Disney in May and I would love to send Bic a postcard or anything that would make her smile from Disney.... if there is anything - please let me know!!!

 

[TwistofLemon]

The pillowcases arrived today!!!! Becca loves them! She especially likes the Cat one in the pink and the black and the one with the fireworks on one end.
We will take pics later today, but suffice to say she loves them all, thanks so much for them

Yay!
I'm kind of partial to those kitties on the hot pink, too. I'm telling my age here, but I remember when I was a teen, a friend had a clock that looked just like those cats. And, the tail swung like a pendulum with every second that passed. Anyone else remember the seventies?? Wish I could find one of those clocks now!

Anyway, I'm glad they finally arrived, and really glad Becca likes them. You are more than welcome!

 

[The3rdDisneyBoy]

Hi Mandy, David, and Becca...

I am My2Disneyboys' husband and this will be my first actual post on the board. I read your entire thread today (when I should have been working) and wanted to pass on my prayers and thoughts. Your daughter is a beautiful, strong, obviously wonderful little girl and your family amazes me with its patience and grace during such a trying time.

Its been amazing to read through your struggle in a couple hours as I know, for you, this all must seem like an eternity. To go from what started as a trip report, to the awful first days during and after surgery to hear how Becca has pulled through all of this with such spirit. And this spirit, with each post, has become less and less surprising because of the obvious natural fight Becca has in her soul. Thank you for sharing this with me.

Echoing my wife's sentiments, we are going in 4 weeks to Disney and would love to know if Becca would like anything.

I will be watching this thread daily, I am sure. Good luck and God bless.

 

[jenb1023]

Hi Mandy!

So sorry to hear Becca is still struggling. I keep hoping every day will get a little easier. Tell her all of your DIS friends are sending good thoughts and prayers her way and that we know she is such an amazing young lady that she can overcome anything!

Hang in there!

 

[maroo]

Hi Mandy, David, and Becca...

I am My2Disneyboys' husband and this will be my first actual post on the board. I read your entire thread today (when I should have been working) and wanted to pass on my prayers and thoughts. Your daughter is a beautiful, strong, obviously wonderful little girl and your family amazes me with its patience and grace during such a trying time.

Its been amazing to read through your struggle in a couple hours as I know, for you, this all must seem like an eternity. To go from what started as a trip report, to the awful first days during and after surgery to hear how Becca has pulled through all of this with such spirit. And this spirit, with each post, has become less and less surprising because of the obvious natural fight Becca has in her soul. Thank you for sharing this with me.

Echoing my wife's sentiments, we are going in 4 weeks to Disney and would love to know if Becca would like anything.

I will be watching this thread daily, I am sure. Good luck and God bless.

How cool!!! To totally come out of lurkdome and post.

Becca is an inspiration to us all! I just had to speak and welcome you to the DISboards!!!

 

[llurgy]

Day 62, April 8, 2009

Went across to the hospital at the usual time this morning and Becca was feeling ok. She had a few stomach cramps because she had just had a bowel movement but generally she was fine. This was until she had to take some antibiotics by mouth.....She hated them and they made her feel nauseous.

As of last night her NJ tube was classed as totally clogged and so the plan was to replaced it with an NG tube late morning rather than the NJ tube into her intestine. We didn't tell Becca what was going to happen until the time it was happening as it would have worried her all morning. As it was, when they told her she freaked out and kept saying, "No, no, no, no, no......" They placed it and now she has a brand new tube, clog free and especially leak free!

Becca's preliminary discharge date has been April 29th for the past 3 weeks, because of all of her off days where she has not done much therapy it was thought that she would have to stay longer, but they have managed to work out a way for us to have "In home" rehab care to do any fine tuning after the 29th and so our discharge date is still April 29th with her rehab carrying on at home! Becca is ecstatic over this news as her BIRTHDAY falls on April 30th and she did NOT want to spend it in the hospital. We were trying to make the idea more palatable by saying she would get two Birthdays if in hospital on the 30th but it only mollified her a little. Now, she shouldn't have to worry about it unless some medical issues stop us from leaving on the 29th.

Becca is allowing me to go home tomorrow for the day, she doesn't want me to go home but I said that if she doesn't let me go home and shop and research some gifts online then she wont get any Birthday gifts, so in a totally altruistic way she is allowing me a day off form the hospital to shop for her

Love Mandy

 

[llurgy]

Hello! What a wonderful, strong, and loving family you have! I have just read through the entire trip report- which has become so much more.... and my heart just bursts for all of you. I have two little boys, and your story here truly makes me appreciate everything just a little bit more. We are going to Disney in May and I would love to send Bic a postcard or anything that would make her smile from Disney.... if there is anything - please let me know!!!

Becca would adore a postcard, She loves Eyeore, Tigger and Mike Zowhatchamacallhim from Monsters Inc.
I will shoot you a PM with our address...thank you so much for thinking of her.

We have come to realize, even before she got sick that most people in this world are good, kind, generous and loving.

We have been given so much love from church and the disboutiquers and loads of people on these boards, our hearts are overflowing with prayers, kind thoughts and gifts.....it makes my heart sing but my eyes cry with happiness.

Mandy

 

[llurgy]

Yay!
I'm kind of partial to those kitties on the hot pink, too. I'm telling my age here, but I remember when I was a teen, a friend had a clock that looked just like those cats. And, the tail swung like a pendulum with every second that passed. Anyone else remember the seventies?? Wish I could find one of those clocks now!

Anyway, I'm glad they finally arrived, and really glad Becca likes them. You are more than welcome!

I know EXACTLY the clocks you are talking about, I think the ones I remember the eyes also moved from left to right in time with the tail.

Love Mandy

 

[llurgy]

Thanks for the updates. I'm sorry to hear that she's still in the hospital. I know what it's like to spend months of your life in the hospital. It's hard. I'm new but I'll be a cheering section. Everyone needs a little motivation!

Thank you for cheering us on, we do appreciate it! I think we need a football Stadium to fit all of our supporters in now

 

[llurgy]

Hi Mandy, David, and Becca...

I am My2Disneyboys' husband and this will be my first actual post on the board. I read your entire thread today (when I should have been working) and wanted to pass on my prayers and thoughts. Your daughter is a beautiful, strong, obviously wonderful little girl and your family amazes me with its patience and grace during such a trying time.

Its been amazing to read through your struggle in a couple hours as I know, for you, this all must seem like an eternity. To go from what started as a trip report, to the awful first days during and after surgery to hear how Becca has pulled through all of this with such spirit. And this spirit, with each post, has become less and less surprising because of the obvious natural fight Becca has in her soul. Thank you for sharing this with me.

Echoing my wife's sentiments, we are going in 4 weeks to Disney and would love to know if Becca would like anything.

I will be watching this thread daily, I am sure. Good luck and God bless.

Awww, you made me cry thank you so much for your words of support, they mean a great deal, even more so coming from a "lurker' and a husband of a poster, I am honored

I finally got around to answering your wife in requesting a postcard for Becca, I just have to remember to PM her my mailing address now

Thank you so much, God Bless you and your lovely family

Love
Mandy

 

[llurgy]

I just had to post a message about nothing
I just happened to look to the left and I noticed that my post count was 499, so I just had to post my 500th one about absolutely nothing at all because I just wanted to.

 

[maroo]

I just had to post a message about nothing
I just happened to look to the left and I noticed that my post count was 499, so I just had to post my 500th one about absolutely nothing at all because I just wanted to.

CONGRATS!!!!!!!

You are now a DIS Veteran!!

Woo Hoo!!!