Becca's Wish Trip........Update:September 2011.....Photo's....Sorta :)
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llurgy
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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.
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
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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!
Dreamer & Wisher
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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!
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
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- Oct 2, 2008
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- 585
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
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
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
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
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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
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
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Way to go Becca!!
What a great day!
What a great day!
Applemomma
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Go Becca Go!!!
llurgy
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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
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What a wonderful day! I noticed that you didn't mention her getting a headache today, especially with all the activity. That is wonderful.
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
llurgy
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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
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
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