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

[maroo]

1000!! Replies in this thread!!!

GO Becca, Go!!!

[llurgy]

Day 67 - Giant basket (April 13, 2009)

Went to hospital around 7.40pm this morning and becca was awake but feeling a little bit queasy. She tried doing her vest treatment but all the jiggling made her feel worse so it was stopped after a few minutes. She was given Zofran for her belly and it kicked in enough for Becca to brush her teeth and get dressed ready for group.

PT this morning was like boot camp, she had to go to the gym in her chair, once there she was told she had to get up out of her chair, walk about 6 feet (without the walker, but with a belt that the therapist uses in case of falling), bend down to pick up a corn bag, try and get it in the corn hole, wait until Mandy had her turn all before sitting back down on a very handily placed chair. After the first round she had to get up again and throw the remaining 3 corn bags, taking it in turns with Mandy. After corn hole she then had to walk back to her wheelchair.

At the end of PT she had a surprise visit from Pastor Scott, he arrived with the biggest Easter Basket you ever saw in your life packed full of Easter Gifts from our Family at Church!! Becca's eyes nearly popped out of her head when she saw Pastor Scott and the basket! Even though she had just done her PT she got up out of her chair again to walk over to Pastor Scott so she could give him a big hug.

It was OT next and instead of playing a game or threading beads it was thought it would be good finger manipulation therapy to open a few of those gifts out of that GIANT basket. Pastor Scott and Mandy looked on whilst Becca opened 4 of her many gifts. Becca was gratified to see a chocolate bunny in the basket and says it will take her a year to eat it as it is so big. Pastor Scott had to leave by this time so we all said a prayers of thanks and after a quick hug from Becca Pastor Scott waved Bye.

We would like to send out our Heartfelt Thanks to our Church Family whom throughout this ordeal have always been there praying for Ourselves and Becca and have offered so much support to us in all shapes and forms, but mostly they have been Praying not stop to get Becca through this, and we would like to say that we appreciate those prayers, we really do. Becca says, "keep 'em coming!!"

Becca did all of her therapies with Gusto today, very reluctant to stand up and walk again this afternoon but once she got going she mentioned that it seemed easier to do than it did this morning and even went a bit further doing the walking than the therapist specified.

Around 5.15pm Becca took a bath, she did really well and climbed into the bath from a chair placed at the side of the bath, previously she has had to be carried and plced into the bath.

Tonight was the first time that Mandy had to give the Lovonox shot into Becca's belly. Becca and Mandy were scared but everything went well and Becca even told Mandy "Good job!" It was a relief to get it over and done with as they wont let Becca out of hospital until the shot can be given by either of us. david hates needles so he does the hand holding.

[my2disneyboys]

One step closer to home! That must have been so scary for the two of you- but I am sure you are happy now you both know what to expect. Keeping Becca in our prayers. When I put my baby to sleep we look up at our skylight and say "star light, star bright, first star I see tonight, wish I may, wish I might, have this wish, I wish tonight, and we have said a few wishes for Becca- Owen is a late talker and doesnt say much but he did say "Becca" - it sounded a little more like Ba- ka but I knew what he meant!

[jenb1023]

Great job on the shot Mandy! The basket and visit sounds wonderful! Keep up the good work Becca!

[Dreamer & Wisher]

I haven't posted in a while, but I always keep up with Becca's progress.

She is making a lot of steady progress. I feel so bad for her whenever I read about the nausea though. Poor thing.

Praying for no more queasy tummy!

Keep up the good work!

[llurgy]

Today was another good day!!

Mandy arrived this morning and poor Becca had already done her morning throwing up. She seems to be collecting a lot of phlegm in her belly, to date we have no idea where it is coming from, but coming it is and it seems that most mornings she has to expel it before carrying on with her day.

After she has emptied her belly she is good for the day, she did all of her therapies with gusto, PT knocked her out as usual with making her walk long distances and play basketball and then making her walk again, but it is all to the good. She played bowling on the Wii this afternoon in play group with some of the other kids, this required playing whilst standing also. All in all she is progressing well and is getting a lot more rehab done than previous weeks when she was feeling bad all of the time.

The doctors are talking about knocking her TPN feeds down another notch which is really good, the sooner she is taken off those the better as the risk of a fungal infection is quite high whilst on TPN and antibiotics at the same time.

She still doesn't really want to eat and her tube feeding will not get put down until she does eat more, but unfortunately she wont eat because she feels full all of the time from said tube feeding. To give you an idea of how much nutrition she is getting, after all this time in hospital and being so sick, she weighs more now than when she was admitted.

Some photo's were taken last week in therapy with Jenny and Ainsley the dog from Speech, the photos are going to be submitted to the annual calendar for therapy dogs. We got a look at the photo's today, they are cute :)

[Grammyof2]

I have been reading almost daily. I am so happy that Becca is doing better and had a nice Easter.

I have and will continue to keep you all in my prayers. Your strength has been amazing. God Bless

[twinmum]

Hello! I think you know I check here every day, although I don't always post. I have been thrilled to see the positive trend...it must still seem kike such a long time you have been in hospital with becca, but when you compare where you were a month ago - even a week ago - you can tell she is really making strides.

I feel your pain with tube feeding. Mark has a g-tube, which was once responsible for about 80% of Mark's caloric intake. For years, he's had overnight feeds as a supplement, but still almost 700 calories. He'll have the tube until he can gain weight without those overnight feeds and we're not there yet! When Mark had feeds during the day, he really didn't want to eat much. Even with blous feeds rather than continuous, it was hard for him to feel hungry.

Hope the steady progress continues!
Alison

[llurgy]

Day 69 - No breaks (April 15, 2009)

Today started off with Becca feeling good this morning, no throwing up or anything like that. Unfortunately we know by now that if it doesn't happen first thing she is sure to start feeling bad sometime mid morning and sure enough around 10am she had to be given Zofran to get her belly to stop misbehaving and feeling nauseous. The Zofran worked and so Becca was able to get on with all of her therapies today.

This morning in PT she did some more standing exercises and took Ainsley the dog for a few short walks, around 6 feet each time. This afternoon in PT she really excelled herself by again taking Ainsley a walk, this time it was in the units corridor and she walked a total of 42 feet with no breaks or walker! She was really proud of herself and has told everyone that she has walked that far......she makes a point of relating that she didnt take a break when she walked such a long distance.

The rest of her therapies were just as successful. She did a 64 piece jigsaw without any difficulty (which means her eyes are on the mend) previously she was having great difficulty lining up the pieces because her eyes were not converging properly and she was seeing double.

I speech she learnt a new card game called "Kings in the corners", the first time she played it this morning she was stood up throughout most of it and she complained that she couldnt concentrate properly on the game. This afternoon she sat down to play it and won.

She played ten pin bowling this morning and the Wii this afternoon in OT. Both times she was standing to play.

So as you can see, Becca has either been standing or walking for the most of the day and has been fine, if exhausted doing it.

Throughout the day she is now staying dry and is able to tell people well enough in advance to get too a restroom.

Love Mandy

[Dreamer & Wisher]

Way to go Becca!!
What a great day! :thumbsup2

[Applemomma]

:banana::banana::cheer2::cheer2:

Go Becca Go!!!

[eyor44]

What a wonderful day! I noticed that you didn't mention her getting a headache today, especially with all the activity. That is wonderful.:thumbsup2

[jmskinner]

:woohoo::yay::cheer2::banana::woohoo::yay::cheer2: :banana:

[llurgy]

Hello! I think you know I check here every day, although I don't always post. I have been thrilled to see the positive trend...it must still seem kike such a long time you have been in hospital with becca, but when you compare where you were a month ago - even a week ago - you can tell she is really making strides.

I feel your pain with tube feeding. Mark has a g-tube, which was once responsible for about 80% of Mark's caloric intake. For years, he's had overnight feeds as a supplement, but still almost 700 calories. He'll have the tube until he can gain weight without those overnight feeds and we're not there yet! When Mark had feeds during the day, he really didn't want to eat much. Even with blous feeds rather than continuous, it was hard for him to feel hungry.

Hope the steady progress continues!
Alison

Oh, the tube feeding, we hate it!

When we first encountered the tube feeding 2 days post surgery she was on 77mls per hour continuous. This stayed basically the same until she started to have those issues around 3 weeks ago and had to go onto the TPN feeding.
They are just now weaning the TPN, but at the same time they are replacing that with the formula feeding, so she is just not hungry, EVER!!
The way it is going we will never ever be off the tube feeds.
Becca has a very small appetite and over the past 2 1//2 years has only gained around 5lb in weight. She stayed at 57lb for 1 year and only now weighs 62lb at 60 inches in height.
Becca has never eaten much, she loves certain foods but will never overindulge and will stop eating even her favorites when she gets full.
The docs will never be satisfied even if she eats what is her usual complement of food per day so we see a battle ahead of us.

Love
Mandy

[llurgy]

What a wonderful day! I noticed that you didn't mention her getting a headache today, especially with all the activity. That is wonderful.:thumbsup2

She got a tiny headache after the walk this afternoon but it was so minor and resolved itself so quickly that it wasnt even worth mentioning :)

love Mandy

[jenb1023]

What a great report for yesterday! :banana::banana::banana:

[iu97alum]

LOVE Kings in the Corner game! Haven't played it in a long time but it was FUN! Yea!

[gcast1]

Our precious girl is making some real progress! Continued prayers for all of you, with a special prayer that Becca's birthday at home will be her best ever! Big hugs to you all:love:

Glenda

[llurgy]

Day 70 - Remember the rules (April 16, 2009)

Today marks our ten week anniversary of being in Nationwide Children's Hospital.

Becca has continued to progress in her therapies, she still lacks endurance ans stamina but she lacked those before all of this happened.

This morning in PT Becca played Air Hockey stood at the air hockey table, the result was a tie of 1-1. Becca plays air hockey very cautiously as she hates to get her knuckle rapped by the puck. Her second PT session was leg stretches - which she abhors. The backs of her knees are still quite a lot higher than they should be when she is lying flat and so she is being given intensive stretches to try and straighten them out.

Today we the wheelchair man came in with an electric chair we are considering purchasing. Becca loves all the "Bells and Whistles" on it but is not so keen on the way it drives as it is not quite so easy to maneuver as the one she has been using. We are getting a chance to test it out over the weekend so no decision has to be made yet.

Becca is just finishing up opening the last of the presents out of the Giant Easter Basket from her church family. she would have finished last night but a bath took precedence so she still had presents to look forward to tonight.

David and Becca are now working together on making rules for her twice daily Lovonox shot that goes in her belly. The nurses giggle away at her instructions and have requested that she write the rules down to be posted on the wall so that they all know her preferences for her shot procedure.

Remember the rules:
1. Must be a crinkly occlusion bandage
2. Must be Emla cream, no substitute
3. Must not describe what is being done
4. Must take occlusion bandage off from the outside
5. Must take occlusion bandage off quickly
6. Must allow alcohol to dry completely before proceeding
7. Must be a thumb available to grasp at this point
8. Must say 3,2,1 before giving injection, not 1,2,3
9. Must not wipe with alcohol after injection
10.Must not wipe any blood off
11.Must not use a brown band-aid, only a blue patterned one

[eyor44]

only a blue patterned one

She forgot to say what shade of blue. :upsidedow

Our girl is doing great!:cool1:

[HeatherSue]

I am with Becca on her rules! If I ever need to have Lovenox injections again, I will post the same rules for myself! :thumbsup2 I love that girl!

[kimmylaj]

becca just cracks me up....too funny. i appreciate a girl who knows what she likes:lmao:

[llurgy]

I am with Becca on her rules! If I ever need to have Lovenox injections again, I will post the same rules for myself! :thumbsup2 I love that girl!

Heather, when you had your Lovonox did it sting after you were given the shot?

Becca says that her belly has twinges inside at the shot site for a few minutes after.

I see you are going to Disneyland......How exciting!!!:banana::banana::banana:

[HeatherSue]

Heather, when you had your Lovonox did it sting after you were given the shot?

Becca says that her belly has twinges inside at the shot site for a few minutes after.

I see you are going to Disneyland......How exciting!!!:banana::banana::banana:

Oh yes, I would say it hurt worse than a sting! The needle going in didn't hurt, but the injection site hurt quite a bit, for a long time. I had a lot of bruising on my stomache from it.

I really feel for her having to have those nasty injections, on top of everything else. I only had to use Lovenox 2x/day for 3 months and now I'm on coumadin. I have to supplement with Lovenox if my INR gets too low, though.

Yes, I decided this week that we're going to Disneyland! It's just me and the kids this time. This will be the first time I've taken them anywhere on an airplane all on my own. I'm a little nervous

[maroo]

Day 70 - Remember the rules (April 16, 2009)

Today marks our ten week anniversary of being in Nationwide Children's Hospital.

Becca has continued to progress in her therapies, she still lacks endurance ans stamina but she lacked those before all of this happened.

This morning in PT Becca played Air Hockey stood at the air hockey table, the result was a tie of 1-1. Becca plays air hockey very cautiously as she hates to get her knuckle rapped by the puck. Her second PT session was leg stretches - which she abhors. The backs of her knees are still quite a lot higher than they should be when she is lying flat and so she is being given intensive stretches to try and straighten them out.

Today we the wheelchair man came in with an electric chair we are considering purchasing. Becca loves all the "Bells and Whistles" on it but is not so keen on the way it drives as it is not quite so easy to maneuver as the one she has been using. We are getting a chance to test it out over the weekend so no decision has to be made yet.

Becca is just finishing up opening the last of the presents out of the Giant Easter Basket from her church family. she would have finished last night but a bath took precedence so she still had presents to look forward to tonight.

David and Becca are now working together on making rules for her twice daily Lovonox shot that goes in her belly. The nurses giggle away at her instructions and have requested that she write the rules down to be posted on the wall so that they all know her preferences for her shot procedure.

Remember the rules:
1. Must be a crinkly occlusion bandage
2. Must be Emla cream, no substitute
3. Must not describe what is being done
4. Must take occlusion bandage off from the outside
5. Must take occlusion bandage off quickly
6. Must allow alcohol to dry completely before proceeding
7. Must be a thumb available to grasp at this point
8. Must say 3,2,1 before giving injection, not 1,2,3
9. Must not wipe with alcohol after injection
10.Must not wipe any blood off
11.Must not use a brown band-aid, only a blue patterned one


Oh the rules are FABULOUS!

I particularly like #8! :rotfl: :lmao: :rotfl2:

[llurgy]

Yesterdays update, posting a day late, sorry.

Day 71 - (April 17, 2009)

What a beautiful day it was today and Becca actually got to take advantage of it. She was out on the Rehab patio/playground from 10.30am until 11.30am and because she didn't want to go back indoors and she had a free period before lunch I stayed out on the patio with her and we played UNO. I won her 2 games to 1 :)

This afternoon she was exhausted after her PT and developed a headache and an upset stomach (bad headaches and upset stomachs go hand in hand with Rebecca and was the normal course of events before the brain abscess). She had some Tylenol and some Zofran and within 30 minutes she was back working away at speech and OT. In TR she played Wii standing up and had finished her session when the "BOOT CAMP" doctor came in and challenged her to a game. Even though she was shattered she didn't let the challenge go and played him at shooting (half the game stood up and half the game sat on the edge of her chair). She lost by only a few points and promptly told him afterward that he played like daddy - viscous!.......He agreed with her :)

Becca is still trying to master the chair that was brought in yesterday. You can tell that she REALLY wants to like it but you can also tell that she REALLY doesn't like it. We will persevere over the weekend in hopes that she begins to feel confident in maneuvering it around.

Becca has been working on eating "real" food. because she is getting formula in her NG tube and TPN via her PICC line she doesn't have that much of an appetite but we are trying to get her to eat at least something from every tray of food she receives. Today she ate half a Bologna sandwich for her lunch and a cup of ice - which is a lot for Becca, she only eats a full sandwich for lunch at the best of times. Tonight she had around half a chicken drumstick from KFC and two green Popsicle's and a cup of ice. We will get there.....we WILL!

[llurgy]

Day 72 - Sunny Roof Garden (April 18, 2009)


At 8am, the day started once again. We have found that Bic takes nearly an hour to come round from her sleep. She is a big grump first thing in the morning and after an afternoon nap. It was no surprise that she had no interest in breakfast - not even a cup of ice!

After getting dressed, the respiratory therapist came in to do her 20 minute vest treatment. This is a perfect time to brush her teeth because the pumping of the vest saves having to use arm power to move the toothbrush!

Bic made a trip to the bathroom this morning using her wheelchair - something that is becoming a routine (hurray).

OT was at 9am, so there was no need to get back into bed. She went to the gym in her wheelchair, where she played a game of Sorry. Bic won the therapist!

Bic didn't have to move for Therapeutic Recreation - she had a game of cards (Kings on the Corner).

The doctors came round at the end of this session and we discussed a few things. It was confirmed that the plan was for Bic not to have to go home with TPN or NG tube feeding, so over the next week, these will be weaned off. She has already had her TPN cut back from 18 to 12 hours per day. We also talked about alternative forms of antibiotic for when she isn't taking it by NG. The liquid and capsules make Bic want to throw up when she puts them into her mouth. They are looking into whether the drug is in tablet form that can be broken into small pieces to swallow, though they were not very hopeful. Overall, they were really happy with Bic's progress and could see huge differences in her from even a week ago.

Immediately after, Bic had PT. She was asked to walk with the help of her walker, but Bic refused. She told the therapist that she didn't need her walker and chose to walk unaided! She walked about 15 feet, then sat down on a raised mat. After resting for five minutes, she agreed to walk back, but this time over a piece of wood shaped like a shipping pallet, about 5" high. This was a first - negotiating a step up and step down, but she did very well.

As it was a really nice day, PT continued outside on the roof garden. There is a small bridge there that she walked over. It is shaped in an arc (no steps). She managed it without too much trouble, though the walk down pulled different muscles in her legs.

We stayed outside in the sun after PT and enjoyed a game of Uno at one of the tables.

Once cooked (it really was quite hot today), we returned to Bic's room and she had a cup of ice (surprise).

Lunch came up a little later and Bic managed to eat a small part of a bologna sandwich. She probably would have eaten more if she hadn't had so much ice!

One of the things we have been deliberating for Bic's departure from hospital is a power wheelchair. She has been using a "loaner" for most of the time. We had the opportunity to have a used chair of a different design and Bic has been trying it out for a couple of days. She doesn't like it as much as the old beater though. It's steering is much more awkward and she just doesn't feel comfortable using it.

This afternoon, we decided to vacate the room. We went downstairs and naturally, had to stop off at the gift shop. After looking at the merchandise there and buying yet another cuddly bunny, we went outside into the real world. We took a walk on the edge of Livingstone park taking in the warm sun, watching children play and the med flight helicopter leave the hospital roof! We were out for quite some time before returning to her room.

For dinner, David and Mandy took a walk to the KFC and brought back a chicken leg for Bic. She had one yesterday and really enjoyed it (though she didn't eat it all, she made a good effort).

This evening, we sat back and watched a DVD of Pixar short films, rented from the hospital video library.

Finally, to close another good day, Bic had a nice bath.

[jessica52877]

I bet being outside is just wonderful! Still praying!

[ndloewen]

Wow, can't believe you are counting in the 70's already! Praying for continued strength.

Oh, by the way, LOVE the rules for the Lovenox!! Anything to make all those shots easier!! Noah has been on them for a year now...so long that he barley notices them anymore. Mouth care is MUCH higher on the list of nasty things for him (much to everyone's surprise). Maybe we'll have to make up our own rules for that!

[twob4him]

I am just so excited to see that Bic is enjoying the outside and doing so well with her therapies...she is really progessing! I look forward to your updates everyday! :goodvibes Prayers for continued progress and healing! :goodvibes


Wow, can't believe you are counting in the 70's already! Praying for continued strength.

Oh, by the way, LOVE the rules for the Lovenox!! Anything to make all those shots easier!! Noah has been on them for a year now...so long that he barley notices them anymore. Mouth care is MUCH higher on the list of nasty things for him (much to everyone's surprise). Maybe we'll have to make up our own rules for that!
I love reading your updates too! I am following all of your blogs each day! :goodvibes I pray for you all everyday! :goodvibes

[eyor44]

How wonderful! another couple of good days. She is so much more active these days.
:cool1:

[llurgy]

Day 72 - Sunday (April 19, 2009)

Last night, Bic gave us instruction not to come over too early as Sunday is the only day she can spend a little bit of extra time in bed. She asked that we not be there until 8.30. It was nice to see that she was bright, alert and smiling at that time. The grumps had apparently passed!

When the doctors did their rounds, the issue of reduced TPN was revisited. We think they are now fully on board with reducing it a bit faster than they have been doing. The only problem is that they don't have the TPN formulator on duty in the pharmacy today, so they can't begin to reduce it again until tomorrow.

For breakfast, Bic had some apple slices and the doctors were very pleased to see her eating. They said that this was the biggest priority now.

After getting ready for the day, we took off on a walk (drive) around the hospital for an hour and a half. Unfortunately, the weather wasn't as nice as it was yesterday. It wasn't cold, but too fresh to go out onto the rooftop (though we did have a brief sampling).

Naturally we had to end the trip with a stop at the gift store - we think Bic is getting very familiar with their merchandise now!

Bic is now really looking forward to leaving the hospital. She is mentally counting down. Even so, she is beginning to realize that this also means leaving behind some very special people on the ward and this is also making her feel very sad.

This afternoon, the three of us sat round a table and played Uno. Bic was on the sofa, which she really enjoyed. We also had a game of Kings in the Corner, though I don't think she really liked this as much as Uno because it required a bit more concentration.

This evening, we began to gather a few things to take back home, then sat back to watch Haunted Mansion. Today was a nice relaxing Sunday, which was good for everyone!

[jenb1023]

Sounds like you had a very good weekend and I am so glad to read that the end of your hospital stay is in sight!

Doesn't Becca have a birthday coming soon? I don't remember exactly when.

[llurgy]

Yup.....Becca's birthday is the day after she gets out of Boot Camp. She gets out on the 29th of April and her Birthday is on the 30th.

Becca is getting to the stage now where she is looking forward to going home but really hating the fact that she is having to say goodbye to the people/doctors/nurses that she has gotten to know so well since she has been here. She was in tears last night when she had to say goodbye to her "most favoritestestest" nurse. This nurse wont be back in work for 2 weeks and Becca leaves in 10 days so the tears were flowing greatly last night:sad1:

[3princesses+aprince]

Oh WOW, I havn't checked in, in a while, I'm so glad to see Becca's doing so well. And I can't believe you guys are finally going home, you must be so happy. But poor Becca who is going to miss the staff:hug: I'm sure she'll be just as happy to be home as you once you're there though!!
:yay: Yay for Becca doing so well!!!

[The3rdDisneyBoy]

That is so great you guys are going home soon. Week from tomorrow...awesome.

I am sure the departure is bittersweet, but in the end its of course great news. Hey, does Becca still spend time with Ainsley? Sorry if you had already mentioned that, but I would assume that would be tough to leave him if she did....

I am really glad to hear she is doing so well and I love the rules...agree that #8 is the best. Diva. Heh.

[llurgy]

Sorry, late with yesterdays update yet again.

3rdDisneyBoy......Yup, Becca see's Ainsley twice a day, most days except for the weekend, she is going to miss Ainsley like crazy.


Day 73 - Superstar (April 20, 2009)

Becca was feeling quite fine this morning until she had to have her morning meds pushed through her NG tube. In the morning she has quite a big volume of medicines and it does not sit well in her belly so ultimately she finishes up having to have some Zofran to settle her stomach so that she can participate in her therapies.
In PT this morning she walked up four stairs, turned around at the top and walked back down the four stairs. All this was accomplished with only the help of the stair handrail, she did really well and made it look pretty easy. After the stairs she had to walk about 15 feet from her chair to the raised mat, rest awhile and then walk back again. This was with the aid of a walker. She doesn't really like the walker but the PT therapist is trying to think of when we get home and Becca being a bit more independent of people always being with her whilst she is walking. Becca using a walker to help herself keep her balance is the only way we are going to accomplish this goal.

This morning Becca was approached by Jenny the Speech therapist to see if she would like to star in a short video portraying Ainsley the dog and his work in the hospital. This video is about pediatric resources at Columbus Children's hospital and is to be shown on the local CBS channel on Thursday at 5:30pm.
So at 2pm Becca, Ainsley, Jenny and Suellen(OT) went down to the Therapy gym with the TV crew to film her segment. Becca started off by brushing Ainsley (this was to show how her arms could stretch and hand manipulate - OT). Becca them played a card game to do with Scrabble with Ainsley laid by her side. Becca was then asked some questions about what she thought of Ainsley and how he had helped in her recovery.
Becca is becoming quite a superstar in the 5 weeks she has been on the Rehab unit. She has been in a photo shoot for general Therapy/Hospital conference/publicity photo's, a photo shoot with Ainsley the dog for the Annual Calendar for therapy dogs and now this video shoot for TV!!

In OT this morning she was tested on hand/eye coordination and manipulation. For this exercise she has to pick up nine pegs out of a box one by one and place them into a nine holed wooden block, she then has to take them all out again one by one and put them back in the box. She is timed twice doing it with the right hand and an average time is worked out from the two times and then timed with the left hand the same way. Three weeks ago she scored 100 seconds with the left hand and 58 seconds with the right hand. Today she scored 56 seconds with her left hand and 33 seconds with her right hand, an enormous improvement from before. The funny thing was, she scored 56 seconds with her left hand both times and 33 seconds with her right hand both times!! How weird is that?? They didn't have a very hard time of working out the average on those did they??

The battle with the food still goes on.......Becca is still struggling with her eating. She probably eats just under 1/2 of what she used to eat at home before all of this happened. She cant fit anymore in. She is still on TPN?Lipids through her IV, though only through the night now. She is also being fed 40mls per hour formula feed continuously throughout the day and the night. She is just not hungry. Tonight the TPN feed is being cut another few hours. She will be hooked back up to it at 6pm and taken off at three in the morning. The lipids have been stopped. So her "milk" has gone and she only has to have "Mountain Dew" now.

[eyor44]

Becca is doing so great!:goodvibes

[jenb1023]

Hi all!

I pm'd Mandy and spoke to some of the Big Give ladies to see if it would be okay to organize a card shower for Becca. She is going home on April 29th and her birthday is April 30th.

Mandy said Becca would love it and that she actually reads every card she receives and not just who it is from.

I knew I wanted to send her a card and I thought that maybe some of Becca's other DIS friends would want to send one to which is why I am posting.

So, if you would like to mail Becca either a welcome home card or a birthday card, please pm me and I will send you the address.

I plan to post this on a few threads to reach as many as Becca's DIS friends as possible (so ignore it if you see it more than once).

Thanks! :hug:
Jen

[my2disneyboys]

oh, we are so happy for you all!! Mandy and David and for Becca too! I knkow it's going to be sad leaving all her friends, but she can visit I am sure whenever she wants- it will be so great I am sure to be home!!

We would love to send Becca a Happy Birthday/Welcome home card. We have her address- do I send it directly to Becca?

[autumnpalm]

I would love to send Becca a card! PMing you!

[jenb1023]

oh, we are so happy for you all!! Mandy and David and for Becca too! I knkow it's going to be sad leaving all her friends, but she can visit I am sure whenever she wants- it will be so great I am sure to be home!!

We would love to send Becca a Happy Birthday/Welcome home card. We have her address- do I send it directly to Becca?


Thank you!

We are sending all cards directly to Becca at their home address (not to Ronald McDonald House or the hospital). PM if that is not the address you have.

[eyor44]

Hi all!

I pm'd Mandy and spoke to some of the Big Give ladies to see if it would be okay to organize a card shower for Becca. She is going home on April 29th and her birthday is April 30th.

Mandy said Becca would love it and that she actually reads every card she receives and not just who it is from.

I knew I wanted to send her a card and I thought that maybe some of Becca's other DIS friends would want to send one to which is why I am posting.

So, if you would like to mail Becca either a welcome home card or a birthday card, please pm me and I will send you the address.

I plan to post this on a few threads to reach as many as Becca's DIS friends as possible (so ignore it if you see it more than once).

Thanks! :hug:
Jen

What a wonderful idea!

[llurgy]

Day 75 - GONE!! (April 22, 2009)

Today Becca was feeling a bit queasy first thing so she had her shot of Zofran (Zofran is our good friend;))and 10 minutes later was bright and cheerful again.
in a change from her normal morning routine of therapies Becca was whisked off at 9am for a 3 hour Psychological evaluation. She was apprehensive about what she had to do in the evaluation but quite pleased to be missing a full morning of therapies :)
Becca got back from her evaluation at just past Midday, she still has some things to complete but they will do it at a later time this week.
Becca just had time to eat lunch before she was whisked off at 1pm to Ultrasound for a scan on her arm to see what the clot on her PICC line is up to. The scan took over a hour and we didn't get back up to the unit until 2.20pm. She was supposed to be baking cookies in OT at 2pm and because half of her time was spent in ultrasound they mixed up the cookies today and will bake them in the morning.
In TR this afternoon she played on the Wii, standing for almost everything she played. Considering Becca hasn't really done any physical therapies today, she looks quite tired, maybe all of the "Brain" work this morning tired her out and sapped all of her energy.
Becca has eaten well today. She only had her usual half a bologna sandwich for lunch, but for dinner she had the same plus a full cheese stick, which is way more than she has been eating whilst in here.
We got the results of the ultrasound scan about the clot on her PICC line.......Drum roll.......It has gone! Totally not there anymore!! A total surprise, as we were led to believe that it would take 3 to 6 months to resolve itself. The TPN has finished and barring anything going awry they will be able to pull the PICC line soon. once the PICC line has been pulled we should be able to stop giving the Lovonox injections in her belly. Great news all round!!!

[maroo]

We got the results of the ultrasound scan about the clot on her PICC line.......Drum roll.......It has gone! Totally not there anymore!! A total surprise, as we were led to believe that it would take 3 to 6 months to resolve itself. The TPN has finished and barring anything going awry they will be able to pull the PICC line soon. once the PICC line has been pulled we should be able to stop giving the Lovonox injections in her belly. Great news all round!!!


Praise the Lord!!!! That is fantastic news!!!!!!! That is a direct answer to prayer right there! :banana: :banana: :banana:

[jenb1023]

That is great news!!!!! :cheer2::cheer2::cheer2:

[kimmylaj]

fantabulous!way to go becca

[ndloewen]

This calls for a banana dance...

:banana::banana::banana::banana::banana::banana:
Fantastic news!!

[llurgy]

Day 76 - Effalump (April 23, 2009)

Both of us were absent from the hospital today. David at work and Mandy at home wrapping Birthday presents and doing laundry in preparation for next weeks homecoming.
Becca of course went to the zoo on her rehab outing. OT and TR therapists went, Ainsley the dog and Sarah the RN. At the last minute, Mark - another 'inmate' went as a friend for Becca.
The trip to the zoo was especially exciting to Rebecca as she saw the new 3-4 weeks old baby "Effalump" that has just been born, plus the requisite Lions, Tigers, Bears, Red Pandas.......the list goes on. Becca said that she enjoyed herself greatly, she didn't get sick or too exhausted, yes, she felt tired when they all got back to the hospital, but it was a good tired!

Becca (apparently) ate well for her lunch, only the usual half sandwich and a few other bits and pieces, but at least she ate. We bought her a KFC drumstick back to her room when we arrived this evening and she ate that all up too, followed by a cup of ice as per usual.

Becca and David have just gone up to the fourth floor of the hospital to play bingo whilst I am sitting writing this really short update. I like short updates, it usually means everything is good! :)

[Tnkrbelle565]

YAY...great news!!! :banana:

[llurgy]

Day 76 - Effalump (April 23, 2009)

Both of us were absent from the hospital today. David at work and Mandy at home wrapping Birthday presents and doing laundry in preparation for next weeks homecoming.
Becca of course went to the zoo on her rehab outing. OT and TR therapists went, Ainsley the dog and Sarah the RN. At the last minute, Mark - another 'inmate' went as a friend for Becca.
The trip to the zoo was especially exciting to Rebecca as she saw the new 3-4 weeks old baby "Effalump" that has just been born, plus the requisite Lions, Tigers, Bears, Red Pandas.......the list goes on. Becca said that she enjoyed herself greatly, she didn't get sick or too exhausted, yes, she felt tired when they all got back to the hospital, but it was a good tired!

Becca (apparently) ate well for her lunch, only the usual half sandwich and a few other bits and pieces, but at least she ate. We bought her a KFC drumstick back to her room when we arrived this evening and she ate that all up too, followed by a cup of ice as per usual.

Becca and David have just gone up to the fourth floor of the hospital to play bingo whilst I am sitting writing this really short update. I like short updates, it usually means everything is good! :)

We just got back from Bingo with a armload full of prizes.
Becca enjoyed herself greatly, we three got so many Bingo lines between us that it started getting embarrassing and we started giving prizes away to the other kids :)

[mom2lilnick]

I am so happy to read this! Sounds like a great time!

[llurgy]

This is Becca's CBS TV story, bless her heart :) (http://www.10tv.com/live/content/health/stories/2009/04/24/story_health_source.html)

[MickeyReeds]

This is Becca's CBS TV story, bless her heart :) (http://www.10tv.com/live/content/health/stories/2009/04/24/story_health_source.html)

This just wonderful! I read the story, but almost missed the video clip! Make sure you click on the little blue video icon and see Becca in action! It brought a huge smile to my face!

[twinmum]

What a lovely story - and the video had me crying, because it is so wonderful to see Becca doing so much!

Alison

[Applemomma]

She's a star!!!:yay::love: She's looking great!!

[jenb1023]

Great job on the interview Becca! Hope all is well and still on track to go home next week.

[eyor44]

Wonderful story and video. Becca looks great.

[my2disneyboys]

That is such a nice story!! Becca looks great and it looks like she is doing so well. What a superstar - 10 weeks after surgery to be featured on TV!! I don't know why but in my head Ainsley was a stuffed animal!?:confused3 That is just so sweet!!!! You may just have to buy an Ainsley of your own for the house:goodvibes!!

[MAGICFOR2]

What a little Superstar! Thanks for sharing. I'm so thankful to God for healing Becca's clot!

[kimmylaj]

wonderful! that smile should definitely be on tv more often. i loved it becca looks fantastic.:goodvibes

[The3rdDisneyBoy]

Aw, I just watched the video. Becca looks great.

Is this the week you guys are going home?

[Baloo]

I am so very happy to see Becca up and talking and making jokes...Ainsley.."my lazy friend" :laughing:.


I was reading Rebbecca's TR when she became ill...I love the picture of her modeling her poofy skirt from the Big Give....she looked like she was whirling and twirling in the skirt and having the time of her life with that huge smile on her face.

I have been following the hospital blog since it started.I don't comment on here much but Becca,Mandy and David have been in my thoughts and prayers every single day.:hug: I always ask God to make Becca that whirly,twirly happy little girl again! :dance3:


I'm so glad to see she's getting better.God bless y'all...many good thoughts and prayers that things get better and better!!!:yay:

[llurgy]

Day 78 - Queen (April 25, 2009)

Sorry about yesterdays lapse in not writing our daily update, Becca was out of her room so much yesterday that there wasn't time to do it and in the evening the time was taken up with Bath Duties.

Yesterday Becca's PICC line was finally taken out!!!! Becca's so happy about it! No more Lovonox shots in her poor bruised little belly, no more once a week painful dressing changes, no more chained to her IV pole 24 hours a day!!!
The procedure itself was a virtually painless one except for the dressing removal. Because the dressing was one that had only been put on two days previous it was still very, very sticky and was putting up a fight about the nurse trying to separate it from Becca's skin. Once the dressing was finally off it was just a matter of pulling out the line, Becca didn't even feel it.

We are still in discussion with the 'Powers That Be' about what "WE" consider adequate nutrition and what "THEY" consider adequate nutrition. Becca is still on 50% of her daily nutrition via formula feed, she is now eating by mouth what we consider around half of what she would have eaten at home before all of this happened. The Doctors are saying that what she is eating by mouth is not even a quarter of what she needs. So, we are at an impasse, because Becca is unable to eat more by mouth because the formula feed is keeping her full. Hopefully we will see the dietician sometime this weekend to work something out that doesn't seem impossible to accomplish. At this rate she will be on the formula feeds forever.

NOW TODAY!

Today was a slow start for Bic. At 8am, she still wanted a bit of time to come round. It wasn't long before the nurse came in to bombard her with her meds. The large volume made her feel quite ill. Bic requested some anti nausea medicine to counter the feeling, but fortunately it went away quickly and by the time it was ready, she didn't need any.

Before her first therapy of the morning, she wanted to go to the bathroom. She walked there with the help of her walker, then for the first time, she made her own way back to bed without any assistance.

For OT at 8.30, Bic got herself dressed then sat on the side of the bed for a game of Uno.

Next therapy was PT and Bic was invited to walk to her wheelchair parked just outside her room. Then she walked 53 feet down the hallway with her walker before stopping and having a rest in her chair. She then did another walk of 72 feet.

For TR at 11 am, Bic went into the recreation room for a game on the Wii. Bic had her favorite game of Rabid Rabbits and she stood to play a music mini game. It involved a lot of arm movements in time to the music. By the end of it, she was quite tired and ready for a sit down.

At lunch time, Bic was invited to go down to the cafeteria with David and Mandy. That was the first time she had eaten outside her room! On the way there, we stopped off at the gift shop to have her balloons re-inflated with helium. She also wanted a stuffed toy and it is the weekend!

We returned to the room to get Bic unhooked from her feed tube so that we could go out. Our trip took us over to the Ronald McDonald House to see where we had been spending our nights for the last 11 weeks. We sat outside on the patio eating ice cream in the hot sun (and high wind). Bic didn't want to go back to the hospital, so we took a detour and walked around Livingston park.

Between going to the cafeteria and Ronald McDonald House, Bic was out of her room for over four hours (12.15 to 4.30), which was really nice. Once back in the room, Bic was happy to lay on her bed and rest.

This evening was the rehab prom. It began at 7pm. Parents were told that they were not invited! We got Bic ready in her "Drizella" dress and took her down to the prom in her wheelchair. David and Mandy went out to try to find a nice place to eat at, but failed miserably ending up at a McDonald's! We did eat in though. Columbus is the most awful place in the world to find restaurants - even with a GPS.

When we got back two hours later, Bic was still not back in her room. The nurse had apparently been down to see if she wanted to come back, but she didn't want to leave. We went to see how she was doing and could see her through the door with a big smile on her face. We left Bic in the dance hall until she was ready to come out (which was right at the very end), then brought her back to her room. She had a big surprise for us - she had been made prom queen and was wearing a lovely crown! Bic was so happy.

It was nearly 10pm by the time she got back to her room and all she wanted to do get into bed and go to sleep!

[llurgy]

Day 79 - Catch 22 (April 26, 2009)

It has been going on for a few days - even weeks. The nutritionists have calculated an ideal calorie intake goal for Bic and are adamant that she achieves it. This has resulted in a situation where the doctors are maintaining high tube feed rates (formula) and complaining that Bic isn't eating enough. The trouble is that Bic isn't hungry because she is getting enough from her formula that she has almost no appetite at all. We are stuck in this catch twenty two. The doctors won't reduce the formula feed because they are afraid Bic will wither away and Bic won't eat because she is getting plenty from the feeds.

We have had the conversation with the doctors time and time again, but it always comes back "...the nutritionists say...". Mandy asked to have a consult with the nutritionist at the end of last week and one was supposedly going to see us yesterday. That never happened, probably because it was a Saturday.

We expect that we will be going home with a tube feed in place.

This morning, Bic managed a couple pieces of strawberry. She didn't really want them. Her formula intake at the moment is 50 ml/h night and day, except for occasions such as a bath or a special trip.

We seem to be having a lot of trouble connecting to the Internet today. The hospital wireless is on the blink!

Bic's lunch consisted of her now favorites - turkey sandwich, strawberries and a couple buckets of ice as she watched Drake and Josh on her laptop!

This afternoon, Bic had a walk down the hallway using her walker - 92 feet none stop! We are so proud of her. Afterward, she is quite out of breath, but not ill.

Having got the exercise out of the way we took a walk to the Neuro ward to say hi to the staff, then a trip downstairs into the lobby then outside for a walk round the park. The sun made things a bit too hot, so we came back into the hospital at the other end and walked back that way. The trouble was that it was cold in the hospital, so we went back out into the shade to get warm again! Never happy!

Could we miss out the gift shop? Of course not! There we were told that Bic had been paged to return to her room.

Back on the ward, Bic was late for some meds, so we had her topped up and then she did a repeat walk of 92 feet. That ended the exercise for the day.

[Baloo]

Could someone please PM Becca's address to me...I have a card to send to her!:goodvibes

Thank you!

[kimmylaj]

wow first a tv star and now a prom queen. we all knew becca was one wonderful girl and it seems that everyone else knows too. heres hoping everything gets worked out with the feeds.

[MAGICFOR2]

I'm so excited that Bic got to be prom queen! What a sweet memory this will be for her!:cutie:

[llurgy]

Day 80 - Busy (April 27, 2009)

Today started off quite busy. Becca had to have bloods drawn this morning but she also had to have an MRI today with some contrast so they decided to put an IV in for the dual purpose of drawing the bloods and giving a site for the contrast to be put in when she went for the MRI. On top of all this her NG tube had blocked up yet again. They still hadn't managed to get it unblocked when she went for an ophthalmology appointment at 10am so it was left capped and Becca was free of tube feeding for a little while.
We went down to outpatient ophthalmology for an eye test at around 10am, it is found that although her eyes are still not converging properly they are a lot better than they were. She has to do some eye exercises once per day and come back for a follow up appointment in 3 months when they expect her to have gotten even better. They took photo's of her optic nerves whilst we were there, apparently the backs of her eyes are pretty congested with blood and the veins coming off the optic nerves are "tortuous" (very thick and not as straight as they should be) We have known this since at least December but they wanted photos to have a baseline so that they could see at any future appointments if this condition had gotten better or worse.

Got back on ward just in time to be taken straight back downstairs again for her MRI of the brain. This was a follow up to make sure that nothing had changed for the worse and to see if the abscess remnant was still shrinking.

We were back upstairs at 12:45pm in time for lunch and to speak with the long awaited Nutritionist. After going round and round in circles we finally came to an agreement that Becca could be left off her tube feeding for 8 hours a day. There will also be some printed material given to actually specify what Becca needs to eat each day to fulfill her nutritional needs. The doctors expect Becca to be on tube feeding for at least a month of so whilst her body is still healing from the ordeal it has just been through. If Becca maintains her weight it shouldn't be long before she is just on tube feeding throughout the night and free during the daytime hours.

Whilst I was talking with the Docs and the nutritionist the nurses pulled out Becca's blocked up tube so until around six this evening she is tube free, at six they will place another one. The clinic coordinator is trying to arrange "In Home Care Nursing" on an as needed basis for feeding tube care at home. We can do most of it but Becca will not let us pull blocked ones out or place new ones in.

Because the tube has been blocked all morning Becca has had to take her medicine by mouth. Up to now it has gone in the tube. The main reason the tubes are getting blocked is because of the medicine and its stickiness. Hopefully from today onwards she will continue to take her medicine by mouth, she knows it is in her best interests and as she hates having tubes replaced so much we think she will keep the feeding tube stickiness free from now on.

At around 6.30pm the nurses came in to place Becca's new NG tube. Although she wasn't happy about it in the slightest she agreed to have the tube placed in the left nostril versus the right where it has been for the past 6 or 7 weeks. The the reasoning for shift of nostrils was twofold, one because you are supposed to swap and change to alleviate soreness having it in the same site and two because it means when we go home the pole holding the formula will be on the right side of the bed in conjunction with the side of the face the tube comes out.

The tube was placed and Becca hasn't cracked a smile since. She claims that it is really hurting her nose and throat. The nurses think that it may just be a little bit of irritation and want to know from Becca what it feels like in the morning after giving it time to settle in.

Becca took the second lot of meds this evening by mouth. This was a disaster as she drank them down and they came straight back up again. The nurses waited half an hour to give her belly time to settle and administered them via the feeding tube. We didn't want any more sticky meds going down the tube, but obviously she has to get the meds somehow and for now the tube is the only way. We are trying to find out alternative ways of giving them, but both ways we have tried to date have resulting in them coming back up.

We leave tonight in the hopes that our Sunny little smiling girl will be back to greet us in the morning.

[eyor44]

What a wonderful weekend. I do hope she feels better tomorrow.

[llurgy]

Day 81 - Mad-House (April 28, 2009)

Today has been spent doing various consults with Doctors and Coordinators ready for discharge tomorrow.
A lot of discussion has taken place regarding the medicines that Becca is now on and the various forms they come in. Becca is on:
Prevacid - Once a day. this one is easy, it comes in a dissolvable tablet that melts in the mouth. She only has to take it once a day to prevent ulcers whilst she is on the tube feeding.
Actigall - Three times a day. This is a thick sticky liquid that tastes nasty and Becca cannot take it by mouth. The hospital here only has it in liquid form so it is still gunking up the tube until we go home and get a script for tablet form. This medicine is to treat the sludge (a precursor to stones)in her Gall Bladder.
Clyndomyacine - Three times a day. Terrible, foul tasting stuff which again, until today has been going down the tube. Becca actually managed to take 2 small capsules by mouth today which is a huge relief as yesterday when she tried to take the liquid form it came straight back up again. This is the antibiotic that she has to take for a year at the minimum, perhaps even for life.
Zofran - As needed. Medicine to treat nausea and to use when traveling. Made in a mouth soluble form.
So it took all day to sort her medicines out and the forms in which she could take them. We also had to work out what was going to happen with the tube feeds. We both refuse to have anything to do with placing or removing the feeding tubes. Becca gets into a panic when anything happens with her tube and for us to try and do it would just traumatize her further. An RN will be available as needed for when we are at home if anything goes wrong with it, so all we have to bother about is checking placement, flushing the tube and turning feeds on and off. For the present the food will be turned on at 6pm and turned off at 10am, which gives Becca some free time to try and eat and for the most part be independent of the pump and tube leash.
Follow-up appointments with Neuro-Surgery, Infectious Diseases, Nutrition, Re-Rehabilitation and Ophthalmology have all been made today. The clinical coordinator here is a marvel and tried to get as many appointments together as possible.
We went down to radiology today to get copies of the studies she has had whilst here this last 80 days, all the MRI's, CT scans, Ultrasounds and X-Rays amount to 32 studies! We keep waiting for her to start glowing and lighting up in the dark.
The MRI she had done yesterday shows a marked improvement in the size of the abscess/abscess cavity, from 4.6cm before surgery it now measures less than 1cm.
In-between all the doctors consults Becca has still managed to do some therapies today. She did arm and leg stretches, walk around 50-60 feet with only contact guard, no walker, no holding hands. She played on the Wii, played a new game with dice called Farkle. It is weird because whilst she cant wait to get home she is getting upset at having to keep saying goodbye to her nurses that wont be on duty again before we leave. She is also dreading saying goodbye to all of her therapists and other nurses tomorrow.
David just pushed the Actigall through Becca's feeding tube for the second time today. Becca just said that he did an excellent job and he gets an A+ and a kiss. Becca again managed to take her Antibiotic capsules by mouth.

Time for us to go now ready for our big day tomorrow. We cant wait to get home.
We especially want to give a big thanks to our neighbors and adopted family over here. For the past 12 weeks Dollie has been religiously going up to our house every single day to feed our cats and fish and keep our house in order for us. Without this help we would have been stuck up the creek without a paddle, probably no boat either! Thank you both Dollie and Jake!!!!!!
Until tomorrow!

[eyor44]

Home tomorrow. How wonderful! and bitter sweet at the same time. :flower3:

[ndloewen]

Oh, what fantastic news! :cool1: I am so happy for you...well, I will be happy for you all once I hear you are actually home!!!

We know all about the bittersweetness of discharge after a long stay. So anxious to be out of there, and yet, so difficult to say goodbye to those who have become your friends and family. And it's tough to switch gears from hospital life to home life. I tend to go through a bit of post hospital depression as we all try to settle in to home life again.. As wierd as it sounds, it's an adjustment being home after the intensity of hospital life. Praying that tomorrow goes as smoothly as it can. :)

[MAGICFOR2]

Happy Discharge Day! I hope everything goes well for all of you.:cool1::cool1::cool1::cool1::cool1:


party::bday:party:Becca!

[TwistofLemon]

!!!!!YAY BECCA!!!!!

!!!!!That's just wonderful news!!!!

[Applemomma]

It's Going Home Day! :banana:It's Going Home Day!! :yay:It's Going Home Day !!!:woohoo::woohoo::woohoo:

[jenb1023]

Happy Going Home Day and Happy Birthday Becca! :banana::banana::banana:

Sorry I haven't posted in a a few days. I hope you have an easy transition from the hospital to home.

[Dani C]

In the words of Dorothy, "There's no place like home." Great to see that you are getting to go home today! :cheer2:

[iu97alum]

Going home and Happy Birthday day!!!!!!

[dukebluebell]

I found y'all's pre-trip report through the Wish boards and have read your whole story these past few days...I will keep you all in my prayers, and

:banana::banana::banana::banana::banana:

HAPPY GOING HOME DAY!!!!!!!

:cheer2::cheer2::cheer2::cheer2::cheer2:

[The3rdDisneyBoy]

Wow!! I am so excited for you guys...Congrats. I know its been a long road. I am so happy for you to have Becca home. WooHooo!

[llurgy]

WE ARE HOME!!!!!!!!:dance3::dance3::dance3:
After 12 long weeks we are at last home!

[iu97alum]

Welcome home!!! Welcome home!

[jenb1023]

WE ARE HOME!!!!!!!!:dance3::dance3::dance3:
After 12 long weeks we are at last home!

:cool1::banana::yay::cheer2::woohoo:

That's great news! Welcome home!

[eyor44]

party::welcome: HOME! party:

[twob4him]

Happy Birthday Becca and Welcome Home!!!!!!
:yay::cheer2::bday:party::rockband::cake:::cool1: :welcome::rainbow:

[kdzbear]

Welcome home! Congratulations on getting back home! :banana:

[Donald is #1]

Yay!!!! :banana::banana::banana::banana:

[ndloewen]

:rockband:party::dancer:

So very happy for you all.

[blairbear]

:yay:I am so happy for you all! Go Becca! Welcome home! :cool1::banana:

[twinmum]

HIP HIP HOORAY, IT'S GOING HOME DAY!!!

:banana::banana::banana::banana::banana::banana::b anana::banana:
:cool1::cool1::cool1::cool1::cool1:

Wonderful news!

Alison

[StefnMike]

coming out of lurkdom to say

party: :bday: party:
BECCA!

WELCOME HOME

[p00h4me]

Great news all around!!! Home at last!!! :banana::banana::banana::yay::yay::yay::woohoo::wo ohoo::woohoo:
:cheer2::cheer2:

[29apr00]

Welcome Home Becca!! You've had a long difficult road but i'm so glad you are well and back home now! :woohoo:

[Lynn5700]

Aww this is great news!!! So glad she is home!! :)

[kimmylaj]

welcome home becca so glad to hear you will all be comfy in your own home.
and yuck about the clindamyacin that stuff is horrendous. Ryan had to take it and it was a horror. hope the pills are a little better than the liquid

[LouiesMama]

WELCOME HOME BECCA!!! :cool1::cool1::cool1:

[jenb1023]

Hi guys!

Just wondering how everything is going now that you are back home.

[llurgy]

Hi guys!

Just wondering how everything is going now that you are back home.

Sorry :upsidedow just not had time t go online and post, or read :)

Becca has been fine except for some issues with the Clyndamyacine she has been prescribed, we had to go to the liquid to put through her tube because the capsule were causing stomach pain and throwing up.
It is like taking a newborn home for the first time in our house at the moment. It takes so long to do such little things and Becca is still at the stage where she still needs supervision for everything. Meds and feeding tubes are taking over our lives :scared1: Help:rotfl:

Other than the inconveniences and lack of structure to our lives we are so grateful to have even reached where we are now from where we were 12 weeks ago, we love being home and love looking after Becca ourselves.

Becca wants to thank everyone who sent a card for her birthday, what with the shower of cards from this board and a shower from Church it took over 4 hours just to open cards on her birthday!! You all made her Birthday REALLY special. Becca also really appreciated the drawing of flowers, houses, rainbows, Spongebob and Monsters Inc that everyone had drawn for her :grouphug:

Love
Mandy

[cherokeemamma]

Hi Mandy,
I found your report about 3 days ago. I have sat and read, laughed, and cried through the entire thing. First of all...I have to say I am so happy that Becca is home and doing so well. I have fell in love with your family and feel like I know ya'll. :goodvibes Thank you for sharing yourself and your family with us. You and David are an inspiration to me with your strength and attititude.

My family is praying for yours and we are hoping that Becca continues to grow stronger with each day.

Please take care of yourself as well.
Sending blessings and pixie dust your way....
Darlene:flower3:

[Khalana]

Hi Mandy,
I'm so happy to hear that you are all home again! :thumbsup2 I bet it is hard to have to do it all yourselves now though. But there is something to be said about doing it all in your OWN livingroom as opposed to the hospital. Give Becca a big hug from us! :hug:

[Baloo]

I'm so happy y'all are home!!! :cool1:


Many good thoughts and prayers for all of you! :)

[jenb1023]

Hi Mandy!

Thanks for the update! I am sure you guys are very busy getting settled in.

I am so glad to hear Becca enjoyed her card shower from us and the church! 4 hours of card opening - WOW!

Hugs to you all!
Jen

[ndloewen]

Thanks for the update. I've been wondering how you are all doing. It really is like taking a newborn home again with so many major changes. Still praying as you all adjust to new routines.

[jenb1023]

Hi Mandy! Just wanted to let you know that I was thinking about you guys and was wondering how you are all doing since you have been home for a few weeks now. Hope all is well!

[purplepeg]

oh my word you guys have been through a lot. I am so happy you are home. Hope you are settling in and establishing your own routine. Thanks so much for sharing all your ups and downs, I will continue to check in on you.

[eyor44]

Hi Mandy:wave2:

How are things going around your house these days? I have been thinking of you all.

[MapleGirl]

Hi Mandy and happy belated Birthday Becca!!!

party:party:party:party:party:party:
I'm so glad you are home. Congratulations. Warm wishes and love coming to you all from Boston.

[mom2lilnick]

We were thinking of you last night, I hope all is well.

[teresajoy]

Hey Mandy, Becca and David, I was thinking of you today and wanted to let you know! :hug:

[eyor44]

Hi Mandy. I have been thinking about you all lately and just wondering how things have gone this summer for Becca.:flower3:

[Applemomma]

I've been wondering too. Hope you're having a fabulous summer Becca!!! :hippie:

[Khalana]

Me too! :) I hope you're all doing great! :)

[llurgy]

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 :lmao: 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:littleangel: :sad2:.
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

[maroo]

Aw! Anytime you want to just stop by, you feel free!!! :)

Although, I would LOVE to read a Becca TR!!! That would make my day, week!!

Take care!! We love you guys! Give Becca a hug and a kiss for us! :hug:

[cshelzy]

I am a long time lurker of Becca's thread I think of her often
I am so glad to hear she is doing well
looking forward to your full report
until then take care and enjoy your family

[jmskinner]

I was coming out to post that I have been thinking of you also and wondering how all of you have been, when I saw you had updated. What wonderful news that you are all ok and Becca is getting stronger!

[kimmylaj]

i am so glad to hear becca is doing well and dont worry about that trip report
we'll be here...we all seem to spend too many hours on here...we're not going anywhere. we'll wait patiently promise;)

[eyor44]

Thank you for taking the time to give us an update Mandy. Becca has been on my mind a lot lately and I was praying that she continued to improve. Thanks again.
Lisa
:hug:

[mom2lilnick]

Glad to hear things are going well! The kids and Jeff have been asking about her.

[purplepeg]

have a great time visiting with family. Glad Becca's doing well:thumbsup2

[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:littleangel:. :grouphug: 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! :thumbsup2

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 :lovestruc

[miprender]

:goodvibes 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.:lovestruc

[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 :lmao: 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:littleangel: :sad2:.
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. :lmao:

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. :lmao:

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:rotfl:

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:lovestruc

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!:eek:

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.:rolleyes1

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 :) :rotfl::lmao:

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 :confused3:goodvibes

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! :hug: 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. :thumbsup2

[llurgy]

Ok then, Part One of Day One coming up.

[eyor44]

Yes, Yes, Yes::yes::::yes::::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. :goodvibes

[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.:hug:

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 :rotfl:

http://i68.photobucket.com/albums/i10/llurgy/Make%20A%20Wish%20Trip/Wednesday%20off%20we%20go/AirportBic.jpg

http://i68.photobucket.com/albums/i10/llurgy/Make%20A%20Wish%20Trip/Wednesday%20off%20we%20go/AirportDad.jpg

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.

http://i68.photobucket.com/albums/i10/llurgy/Make%20A%20Wish%20Trip/Wednesday%20off%20we%20go/AirplaneBic.jpg

http://i68.photobucket.com/albums/i10/llurgy/Make%20A%20Wish%20Trip/Wednesday%20off%20we%20go/Bicsillyairplane.jpg

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 :lmao:

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.

http://i68.photobucket.com/albums/i10/llurgy/Make%20A%20Wish%20Trip/Wednesday%20off%20we%20go/GKTWgreeter.jpg

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!!! :cool1:

[Applemomma]

Yes! Yes! Yes! :banana:

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! :rotfl:

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!

[Tnkrbelle565]

Great start! i was there last Feb too...and yes it was FREEZING.

Glad you didn't wait to get her oxygen! You would have waited forever!

Also love the laptop! Soooo pretty!

[my2disneyboys]

HI Mandy!! So nice to hear from you and to hear about how Becca is doing. I have thought of her often. I am not sure if you remember me or my husband Wayne (the 3rd disney boy here on the DIS) but we do remember you guys and I am so excited to hear all about your trip!

We are heading back to Disney in 10 days!! We are all so very excited:banana:

Looking forward to hearing more about your trip!

Nickie

[miprender]

Hi Mandy... so glad you are writing your TR. And glad to hear Becca is doing better. Every so often I always think about your family.:goodvibes

So I can't wait to read more...:surfweb:

[jmskinner]

Hi Mandy!!! So glad Becca is doing well and I am very excited to read the TR.

:goodvibes

[llurgy]

HI Mandy!! So nice to hear from you and to hear about how Becca is doing. I have thought of her often. I am not sure if you remember me or my husband Wayne (the 3rd disney boy here on the DIS) but we do remember you guys and I am so excited to hear all about your trip!

We are heading back to Disney in 10 days!! We are all so very excited:banana:

Looking forward to hearing more about your trip!

Nickie

Yes, I remember ! For one, you sent Bic a postcard :hug: For 2, you did all of those Disney theme nights didnt you??

[llurgy]

Becca loves her Lappy, she loves that it is Pink and that it is hers. It was last years Christmas present. That laptop was used to type all of our updates whilst in hospital, came in real handy it did :)

Mandy

[my2disneyboys]

Yes, I remember ! For one, you sent Bic a postcard :hug: For 2, you did all of those Disney theme nights didnt you??

Yep- that is us!! Lilo and Stitch is coming up on Friday Night this week!

[eyor44]

Great start and love the pics! :yay: Can't wait to hear and see more. Thank you for sharing with us.

[twinmum]

Ok then, Part One of Day One coming up.

I'm thinking about all that you went through last year...and I have started to cry even before I have read then first instalment of your TR. I have never been able to get to ours...we got back, so much going on with health issues for the boys and my mother...and our reno...and more. I hold our Wish Trip memories close and hope that some day I'll write more of it down.

If you write it...I'll be here to read it! Hugs to Becca and so good to see you back here.

Alison

[llurgy]

I'm thinking about all that you went through last year...and I have started to cry even before I have read then first instalment of your TR. I have never been able to get to ours...we got back, so much going on with health issues for the boys and my mother...and our reno...and more. I hold our Wish Trip memories close and hope that some day I'll write more of it down.

If you write it...I'll be here to read it! Hugs to Becca and so good to see you back here.

Alison

Oh I do hope that things havent gone too awry for you! I do hope it is just that day to day stuff and kinda life things that are filling your time up.

You sound down.....shoot me a PM if you need to just yabba away and talk.

I feel as if I am just, and I do mean just, starting to come out of a fog. Since Bic came out of hospital in April/May I dont seem to have been able to get my head around doing anything other than surf and do my daily chores.
I dont work, all I have to do is look after Bic and she is no trouble.
I suppose life kinda got on top of me and I couldnt really put my mind towards doing anything constructive. It's only in the last few weeks that I have started feeling anything like myself again. I do hope it lasts :(

As I said, if you need to talk, my PM Box is always open, just ring the bell and walk right on in :)

Love
Mandy

[llurgy]

Great start and love the pics! :yay: Can't wait to hear and see more. Thank you for sharing with us.

I have to find our itinerary for the week, I cant find it help! I didnt take notes and stupid us forgot to take pictures of the rides we went on so our itinerary is the only thing that will tell me the order of the rides we went on and jog my memory for the tings we did inbetween.

LOL......We have 3 of those 50 gallon Rubbermaid containers down in our basement full of Hospital and Disney stuff. We came home from Disney, I unpacked all the junk we got into the spare room. We finished up in hospital before I got time to go through it, I was lucky I even had laundry done:rotfl:
Came home from hospital 3 months later and unpacked from there into the spare room.
Trouble is my mum, brother and sister-in-law are coming from England for a three week visit a week and a half after we get discharged from hospital and we need the spare room :scared1:

So I did what any sane minded person would do, I put it all in really large Rubbermaid containers and hid it all in the basement and there it has stayed never to see the light of day again.
I will have to go searching for our Disney stuff tomorrow, if you dont see me for a few days it means the containers have eaten me, please send someone to rescue me.:lmao:

Love
Mandy

[twinmum]

[QUOTE=llurgy;35095970]Oh I do hope that things havent gone too awry for you! I do hope it is just that day to day stuff and kinda life things that are filling your time up.

You sound down.....shoot me a PM if you need to just yabba away and talk.

I feel as if I am just, and I do mean just, starting to come out of a fog. Since Bic came out of hospital in April/May I dont seem to have been able to get my head around doing anything other than surf and do my daily chores.
I dont work, all I have to do is look after Bic and she is no trouble.
I suppose life kinda got on top of me and I couldnt really put my mind towards doing anything constructive. It's only in the last few weeks that I have started feeling anything like myself again. I do hope it lasts :(

As I said, if you need to talk, my PM Box is always open, just ring the bell and walk right on in :)"end quote






You are so very sweet. You are right...I am down, but it's a combination of things. We returned from our trip literally into the midst of a major renovation to make our house accessible for Mark ( we were moved while we were away!). Then my mother had a rapid onset of dementia. The boys struggled with respiratory issues (they are twins, born > 3 months early). we moved back into our house post reno. I had some challenging (volunteer) work issues. Our son is struggling with the need to develop his independence.

We spent the fall preparing for SSATs, competing for admission to private schools who it now seems are having difficulty figuring out how/whether to meet our son's needs. (This is a guy who aced those SSATs!). All of us had H1N1...but no admissions for our guys, which I think was miraculous.

And now, tomorrow, I am moving my mother to a long term care facility.

It's just been hard, hard, hard...for over a year. Nothing over the top, nothing critical like you have seen, but just waiting to catch a lucky break. I am surrounded by people who face less adversity and just have to keep my chin up...but sometimes it's so very hard. I come to these threads for encouragement.

You are so thoughful to offer your support...you have been through so mcuh this year.

I am so looking forward to my week away at "the World" with the boys!

[Applemomma]

Not to highjack Mandy's thread but.....MAN! TwinMum! :hug: :hug: :hug: :hug: :hug: You deserve that vacation! Hope it goes alright with your mom today.

[jessica52877]

I am here and look forward to reading about whatever you remember! I am sure it is has not been an easy year and so glad you came back to say hello!

Twinmum, hugs to you too! Hope to someday hear more about your TR.

[llurgy]

[QUOTE=llurgy;35095970]Oh I do hope that things havent gone too awry for you! I do hope it is just that day to day stuff and kinda life things that are filling your time up.

You sound down.....shoot me a PM if you need to just yabba away and talk.

I feel as if I am just, and I do mean just, starting to come out of a fog. Since Bic came out of hospital in April/May I dont seem to have been able to get my head around doing anything other than surf and do my daily chores.
I dont work, all I have to do is look after Bic and she is no trouble.
I suppose life kinda got on top of me and I couldnt really put my mind towards doing anything constructive. It's only in the last few weeks that I have started feeling anything like myself again. I do hope it lasts :(

As I said, if you need to talk, my PM Box is always open, just ring the bell and walk right on in :)"end quote






You are so very sweet. You are right...I am down, but it's a combination of things. We returned from our trip literally into the midst of a major renovation to make our house accessible for Mark ( we were moved while we were away!). Then my mother had a rapid onset of dementia. The boys struggled with respiratory issues (they are twins, born > 3 months early). we moved back into our house post reno. I had some challenging (volunteer) work issues. Our son is struggling with the need to develop his independence.

We spent the fall preparing for SSATs, competing for admission to private schools who it now seems are having difficulty figuring out how/whether to meet our son's needs. (This is a guy who aced those SSATs!). All of us had H1N1...but no admissions for our guys, which I think was miraculous.

And now, tomorrow, I am moving my mother to a long term care facility.

It's just been hard, hard, hard...for over a year. Nothing over the top, nothing critical like you have seen, but just waiting to catch a lucky break. I am surrounded by people who face less adversity and just have to keep my chin up...but sometimes it's so very hard. I come to these threads for encouragement.

You are so thoughful to offer your support...you have been through so mcuh this year.

I am so looking forward to my week away at "the World" with the boys!

Boy, you have been through such a lot lately, you really need a vacation to recharge your batteries.
Why do you belittle your feelings and hardships? Your troubles are as important and as hurtful as anyone elses. Lots of smaller things are sometimes much more of a killer than one big thing. Things that happen throughout the year just carry on dragging you down to that deep horrible place and never give you a chance to recover.

We are all guilty of thinking, well I and my child/children are still better off than their child/children so I really have no reason to complain. Thats why we have places like here to go, these places keep us sane.

You really sound like you have had an horrendous year with knock after knock and no chance to recover.

Hopefully your break at Disney will give you the recharge you so sorely need.

Love
Mandy

[maroo]

Alison - :hug: :hug: :hug:

Mandy - Love the first installment...I can't remember if I posted that. :) I am so glad you are going to write a trip report! :)

[jenb1023]

Mandy! So glad to see you! I think of Becca and you guys often! I am so glad you are writing a TR! Looking forward to more updates.

[yinyanggirls]

Yay! Another Wish Trip report! I hope the containers are gentle with you. ;)

[MaryAz]

Mandy It is so great to see you back on here! So happy to hear that Becca is doing well. Can't wait to read this great report!!

[leamom2princesses]

Hi Mandy! I mostly lurked last year as you were planning but I'm really excited to see that you are posting again and will be sharing your trip with us. I'm thrilled to hear that Becca is doing better. What wonderful news. :goodvibes

[p00h4me]

Hi Mandy,
I haven't been on the Pre-Trip Reports this week so I missed your post. I'm one of those happy to see that you now feel up to writing about Becca's Wish Trip! It's so good to read and know how Becca's been doing since she left the hospital last year. Tell Becca I said Hi, if she remembers me?

Hope you can find your itinerary from the trip! Can't wait to hear about the rest of your trip! :yay::goodvibes

[eyor44]

And now, tomorrow, I am moving my mother to a long term care facility.

It's just been hard, hard, hard...for over a year. Nothing over the top, nothing critical like you have seen, but just waiting to catch a lucky break. I am surrounded by people who face less adversity and just have to keep my chin up...but sometimes it's so very hard. I come to these threads for encouragement.

I am so looking forward to my week away at "the World" with the boys!

:hug: for you.

[eyor44]

So I did what any sane minded person would do, I put it all in really large Rubbermaid containers and hid it all in the basement and there it has stayed never to see the light of day again.
I will have to go searching for our Disney stuff tomorrow, if you dont see me for a few days it means the containers have eaten me, please send someone to rescue me.:lmao:


I do this also, only mine have to go in the attic. DH gets so :headache: if he sees me. Sometimes you just gotta do what you gotta do to get ready for company. :thumbsup2

[3princesses+aprince]

Oh, so happy to hear from you! I wonder about Becca often! I felt so horrible that you all had to go through what you did right after your wonderful Disney Trip!

Great first installment!!!!


HI BIC :banana:

[MAGICFOR2]

Mandy! So good to see you back. I often think of Becca and wonder how she's doing while saying a little prayer for her. So glad to hear she's doing well. I'm excited to read about your trip, and it sounds like you're off to a great start! popcorn::

Allison, I haven't "talked" with you before, but just wanted to send :hug: your way. I'm praying things start getting better for you and your family. So glad everyone made it through the flu alright.

[mom2lilnick]

Mandy, I have been thinking a lot about you guys this week.. about Becca, about Nick, about MAW, about Disney.. I can't believe a whole year has past. Man it was cold there, wasn't it?

I have to say when I saw that first picture of Becca in the wheelchair in the airport, I got the biggest smile on my face! It is amazing how something as simple as a picture can transport you back a whole year. Tell Becca we are thinking of her and how proud we are to know her. I am sorry I haven't been around. Oddly, I wouldn't have clicked on here today except I meant to click on my bank statement and accidently went one down too far and ended up on the dis boards.. so I thought I would see what was going on. Glad I did. :) Huggles!

[TwistofLemon]

Hi Mandy! It's great seeing you back on the Dis again! Can't wait to read your trippie:woohoo: And, sooooooo glad to hear Becca is doing well. Now, I'm sure your family hasn't left you in the Rubbermaid bins, so please, do cary on popcorn::

[teresajoy]

Mandy, I'm thrilled that you are starting to write your TR!!! Like Heather said, what you don't remember, just make up!

I think of you guys all the time! You are such a special family. I'm so glad to see you back around. :hug::hug::hug::hug::hug:

[agrievingmommy]

Mandy,
I learned about Becca from MouseScrappers and the things that are going on over there for her. I just want you to know that we are thinking about you and Becca and that there are people out there that do understand. My 2 girls died from a genetic disease and I just know in my own way the battle that you are fighting. I am so sorry that Becca is going through this. I just want to send you a cyber hug and let you know that we are thinking about you and Becca.
Denise
aka A Grieving Mommy

[llurgy]

Mandy,
I learned about Becca from MouseScrappers and the things that are going on over there for her. I just want you to know that we are thinking about you and Becca and that there are people out there that do understand. My 2 girls died from a genetic disease and I just know in my own way the battle that you are fighting. I am so sorry that Becca is going through this. I just want to send you a cyber hug and let you know that we are thinking about you and Becca.
Denise
aka A Grieving Mommy

Thanks Denise....So sorry to hear about your 2 girls:grouphug:

I am as always overwhelmed by the generosity of people whom I dont know barring the internet! The Internet is a wonderful thing and is my lifeline to the rest of the world.

To anyone wondering, Becca is doing as well as she can considering her disease and what she has been through in her life.
She is enjoying the fact that there is no school ATM more than anything:thumbsup2:lmao:

[llurgy]

I have something BRILLIANT to show you all!!

A while ago a DISBoard member emailed me to inform me that an Organization called the MouseScrappers had approached her and were wanting to do a Digital Scrapbook of a Wish Trip. Anyways, this kind person put my name forward..........A few months later and we have the results. Around 40 to 50 voluntEARS of MouseScrappers put a lot on work into the book, and we even got a bonus Big Give book too!:dance3:
The Organization is MouseScrappers (http://www.mousescrappers.com/forums/) and if anyone needs any info about it I have been informed that using the contact us button will get inquiries to the correct place

Anyways, I hope these links turn out okay

The Big Give Book (http://mandysspublicshare.shutterfly.com/pictures/10)

The Make-A-Wish Book (http://mandysspublicshare.shutterfly.com/pictures/11)

I also made a small photo book of the reveal when she received the books in the mail

The Scrapbook Reveal (http://mandysspublicshare.shutterfly.com/pictures/13)

Again.....I want to give our heartfelt gratitude to all that have given their time, money and thoughts throughout Becca's journey through life.....The Make-A-Wish Foundation, GKTW, The Big Give People, The MouseScrappers and all the people that sent good Wishes, Presents and Prayers when Becca was in Hospital. You all totally changed our journey through life with your actions :cloud9::love:

Love Mandy

[p00h4me]

Hi Mandy,
Thank you so much for sharing the wonderful scrapbooks from the MouseScrappers! Great memories from Becca's trip and all the Big Gives she received! What a blessing that your family were chosen for this special gift especially after the trip, Becca had to be in the hospital for many months. It's good to hear and see how Becca is doing now too.
Gail

[llurgy]

Hi Mandy,
Thank you so much for sharing the wonderful scrapbooks from the MouseScrappers! Great memories from Becca's trip and all the Big Gives she received! What a blessing that your family were chosen for this special gift especially after the trip, Becca had to be in the hospital for many months. It's good to hear and see how Becca is doing now too.
Gail

Thank You for your kind words.
The books are awesome aren't they? Thanks again MouseScrappers:lovestruc

After the hospital episode I just couldn't get myself in gear to do a trip report, but now we have a permanent reminder all wrapped up in a couple of real books to look back on for years to come.
Becca is doing ok, we still have regular trips to the ER for a CAT scan(we went a few weeks ago, again in April and believe it or not we had to go New Years day also) if she has headache for more than a few days, she has also been on Antibiotics for over two and a half years now but other than that we do fine. Her recovery from such a devastating occurrence is nothing less than amazing:worship:

So....Time for beddy-byes for me
Mandy

[jessica52877]

What beautiful books! The time and love put into those is amazing! So glad to hear that Becca is doing well.

[blessedmom4]

How absolutely GORGEOUS and what a true remembrance of a very special trip! THANK YOU for sharing!

Blessings,
Judy

[miprender]

Mandy thanks for sharing.:goodvibes Those books are just amazing.

I had followed your TR when you first came home and had always remembered your family and everything you were going through:hug:

[twinmum]

Hello Mandy! These scrapbooks and phenomenal!!! What a wonderful way to remember Becca's Wish Trip, such a precious gift. Life was so crazy up and down when we got back (living elsewhere while managing a major reno, mother's rapid and scary onset of dementia, medical issues with Mark), I never did a TR and have always regretted it. I haven't even sorted the pictures our properly! The best I managed was taking one of the Big Give t-shirts and preserving it in a shadow box and actually hanging it up in Mark's room...about a year after we moved back in. Simply not reflective of the gratitude we have for the amazing experience of the Wish Trip, finding support from the WishTrippers here on the DIS, the Big Give gang...

So glad to hear that Becca is doing well. Our boys are fine - big changes for both last year as they changed schools. Another change for Mark this year as he has moved from the Preparatory to the Upper School at his school. It's a very demanding school academically but he's loving the classes if not the homework. Great to see him challenged and engaged. Douglas is enjoying his new school too, also into soccer, flag football etc. We've managed a Disney trip just about every year since the Wish Trip, a nice way to keep the memories alive, and the WDW CMs are so good to our family, always going out of the way to make things easier. We tried a Disney cruise this past March which was great. We stayed on property for 2 nights beforehand and met up with Maroo, Lauren and Lisa!!! Our first DIS meet, I was very proud of my DH and sons for tagging along.

Hope all continues to go well. And glad I caught your post - gues there was a reason for keeping those thread subscriptions after all!

Alison