Hey Everyone, Ben is still fighting. We have now discontinued all of his medicine except his steroids. It is alot of work for him to swallow all of his pills. We are now spoon feeding him liquids the consistency of pudding. We moved his hospital bed into the living room now because it was too much work for him to sit up on the sofa so now we can just push the button and raise him up and down. He had a nice early morning visit with Mrs. Williams, Mrs. Hernandez, and Mrs. Hedlum from St. Andrews to brighten his spirits a little.
We Will update again later
Monday, February 22, 2010
Sunday, February 21, 2010
No Ice Cream today
Hey Everyone,
No real change since yesterday. Ben hasn't wanted to eat anything but we have been getting him to drink a little. Had a visit from his good buddy Jackson today and that perked him up for a little while. Fr Paul came by and give him the anointing of the sick today. Just kind of hung out all day with family and friends.
Love to all
The Sarrat Family
No real change since yesterday. Ben hasn't wanted to eat anything but we have been getting him to drink a little. Had a visit from his good buddy Jackson today and that perked him up for a little while. Fr Paul came by and give him the anointing of the sick today. Just kind of hung out all day with family and friends.
Love to all
The Sarrat Family
Saturday, February 20, 2010
Good day
Well its been a long, but good day. Ben has been awake here and there throughout the day. Even when you think he is sleeping he's not ...he's listening to everything around him and continuing to through out his T-shirt worthy one liners!
We had lots of great visitors today. Several of his buddies, Mitchell, Patrick, and Tanner can by with their families and we had a great game of Bingo...they all won it was amazing! All the local cousins came to play, and aunts and uncles, so that was fun as always. Grandma and Grandpa flew in from Phoenix and Aunt Mego and Mickey made it as far as Houston and will be here early Sunday morning. Ms Melanie and Ms Jessica were here most of the day and we love having them here to play! And our wonderful neighbors Ms Kim and Mr Tom were in and out all day. Thank you to everyone who came to see us Ms Rita, the other Ms Jessica and I hope I'm not forgetting anyone. Ben loves all his visitors!
So Ben heard his cousins were on there way and he asked when I was going to get his ice cream flavors today. For those of you who don't know Ben has a new friend Mr Chris who owns a 31 flavors. Mr Chris gave him a lifetime free ice cream pass, so the first time we went Ben asked what kinds they had I told him they had lots, that is why it was called 31 Flavors because well, they have 31 flavors...he then asked can I try all 31. I told him sure but not today, so we agreed we would make it our mission to try all 31! We had tried 7 before today. So he was sending me out to get two more flavors today, but Ms Melanie said she would go, and she came home with all 24 flavors we hadn't tried yet!!! So needless to say we ate ALOT of ice cream today. 10 more flavors down and 14 to go!!! When asked what his favorite so far is Ben can only mumble ALL! Thank you to Mr Chris and Ms Melanie for this fun diversion from reality!
Friends are welcome to stop by and see Ben in the next days, we just ask that you call first to make sure he is up for it. We are so blessed to have so many wonderful friends and family to support us through these last 15 months and this most difficult week ahead. Also a big thank you to my DIPG family and NOLA cancer moms you all have came to be so important to me!
We will keep you all posted as we can. Ben is resting comfortably right now, and I pray for an uneventful night.
Love to all
The Sarrat Family
We had lots of great visitors today. Several of his buddies, Mitchell, Patrick, and Tanner can by with their families and we had a great game of Bingo...they all won it was amazing! All the local cousins came to play, and aunts and uncles, so that was fun as always. Grandma and Grandpa flew in from Phoenix and Aunt Mego and Mickey made it as far as Houston and will be here early Sunday morning. Ms Melanie and Ms Jessica were here most of the day and we love having them here to play! And our wonderful neighbors Ms Kim and Mr Tom were in and out all day. Thank you to everyone who came to see us Ms Rita, the other Ms Jessica and I hope I'm not forgetting anyone. Ben loves all his visitors!
So Ben heard his cousins were on there way and he asked when I was going to get his ice cream flavors today. For those of you who don't know Ben has a new friend Mr Chris who owns a 31 flavors. Mr Chris gave him a lifetime free ice cream pass, so the first time we went Ben asked what kinds they had I told him they had lots, that is why it was called 31 Flavors because well, they have 31 flavors...he then asked can I try all 31. I told him sure but not today, so we agreed we would make it our mission to try all 31! We had tried 7 before today. So he was sending me out to get two more flavors today, but Ms Melanie said she would go, and she came home with all 24 flavors we hadn't tried yet!!! So needless to say we ate ALOT of ice cream today. 10 more flavors down and 14 to go!!! When asked what his favorite so far is Ben can only mumble ALL! Thank you to Mr Chris and Ms Melanie for this fun diversion from reality!
Friends are welcome to stop by and see Ben in the next days, we just ask that you call first to make sure he is up for it. We are so blessed to have so many wonderful friends and family to support us through these last 15 months and this most difficult week ahead. Also a big thank you to my DIPG family and NOLA cancer moms you all have came to be so important to me!
We will keep you all posted as we can. Ben is resting comfortably right now, and I pray for an uneventful night.
Love to all
The Sarrat Family
Hanging in There
Ben is still hanging in there and fighting. His breathing has gotten extremely shallow. He is very in and out now and we do not know how much longer he will be conscious. We will try to keep everyone posted as we go.
Big Ben and Erin
Big Ben and Erin
Sunday, February 14, 2010
Happy Valentine's Day
Hey Everyone
Ben wanted me to post a Valentine's message...
Happy Valentine's Day!!!
We are just laying low trying to recover from his RSV ans pneumonia still. On oxygen about 50% of the time, and confined to the wheel chair but still fighting.
Ben!
Ben wanted me to post a Valentine's message...
Happy Valentine's Day!!!
We are just laying low trying to recover from his RSV ans pneumonia still. On oxygen about 50% of the time, and confined to the wheel chair but still fighting.
Ben!
Saturday, February 6, 2010
AWESOME DAY!!!
Ben accepting the proclamation naming Feb 6, 2010 "Pirate Ben Sarrat" day in Jefferson Parish!So tomorrow is the BIG GAME!!! Ben is going to rest up till the game so he has plenty of energy to watch the game and bring them luck!!
Hope you enjoy the pictures!GEAUX SAINTS!!!!!
Erin
Ben on his last day of radiation (this time!)
This is the get well chain he got from his school, each link is a special message from each child at the school! He loves it!
Ben riding today - throwing treasures!
Thursday, February 4, 2010
Getting Ready for a BIG Weekend!!!
Hey Everyone,
Just checking in to let you know we are good. Ben is recovering, its a long process the RSV & pneumonia really did a number on his lungs. He has difficulty walking, he is very weak. But he is in good spirits, he went to school for a couple hours two days this week already. Ben is pretty much confined to his wheel chair, and requires oxygen every once in a while. We went to clinic today and had a CT scan and saw the neurosurgeon so it was a long day. His counts are good, his CT looked great the procedure is doing exactly what it was supposed to, plenty of space for CNS fluid to circulate. Ben finally got his stitches out of his head so that is nice, and his blood work was good so he doesn't need to be on IVs at night because he is really working hard to eat and drink well. We are taking today off and resting we had a long night lots of coughing and breathing treatments. And we are saving our energy for this weekend.
Saturday, Lil Ben will be riding Alla (a Mardi Gras parade - for all you out of towners - we do Mardi Gras for about 2 weeks not just Fat Tuesday!) as long as he is feeling up to it. He was invited by Councilman Chris Roberts from Jefferson Parish to ride on his float with him! Lil Ben doesn't know yet, we didn't want to get him all excited and then have to tell him no that morning if the weathers not good enough or if he is not strong enough. So that will be a great surprise for him! Councilman Roberts has been wonderful, he has arranged for a police vehicle to pick us up at the house just before the parade so we don't have to wait and park and weave through giant crowds, and the police escort will stay with the float so if at anytime Ben needs to get off they will stop the float get us off and take us home. It would be impossible for us to do this without those special accommodations. So come watch the Krewe of Alla here on the Westbank!
We will definitely post pictures!
Sunday, well I'm sure you all know what Sunday is.......YES the SAINTS ARE GOING TO WIN THE SUPER BOWL ON SUNDAY!!!! We are all very excited for this! We are planning on hanging out and watching the game, no giant party - but daddy is going to use our LCD projector and show the game on the garage door in the drive way, so it will be life size! Don't tell the NFL they will probably fine us for "rebroadcasting with out the expressed written consent of the NFL". Our neighbors are having parties so they should enjoy the outside broadcast too!
Hope everyone has a great weekend!
Erin
Just checking in to let you know we are good. Ben is recovering, its a long process the RSV & pneumonia really did a number on his lungs. He has difficulty walking, he is very weak. But he is in good spirits, he went to school for a couple hours two days this week already. Ben is pretty much confined to his wheel chair, and requires oxygen every once in a while. We went to clinic today and had a CT scan and saw the neurosurgeon so it was a long day. His counts are good, his CT looked great the procedure is doing exactly what it was supposed to, plenty of space for CNS fluid to circulate. Ben finally got his stitches out of his head so that is nice, and his blood work was good so he doesn't need to be on IVs at night because he is really working hard to eat and drink well. We are taking today off and resting we had a long night lots of coughing and breathing treatments. And we are saving our energy for this weekend.
Saturday, Lil Ben will be riding Alla (a Mardi Gras parade - for all you out of towners - we do Mardi Gras for about 2 weeks not just Fat Tuesday!) as long as he is feeling up to it. He was invited by Councilman Chris Roberts from Jefferson Parish to ride on his float with him! Lil Ben doesn't know yet, we didn't want to get him all excited and then have to tell him no that morning if the weathers not good enough or if he is not strong enough. So that will be a great surprise for him! Councilman Roberts has been wonderful, he has arranged for a police vehicle to pick us up at the house just before the parade so we don't have to wait and park and weave through giant crowds, and the police escort will stay with the float so if at anytime Ben needs to get off they will stop the float get us off and take us home. It would be impossible for us to do this without those special accommodations. So come watch the Krewe of Alla here on the Westbank!
We will definitely post pictures!
Sunday, well I'm sure you all know what Sunday is.......YES the SAINTS ARE GOING TO WIN THE SUPER BOWL ON SUNDAY!!!! We are all very excited for this! We are planning on hanging out and watching the game, no giant party - but daddy is going to use our LCD projector and show the game on the garage door in the drive way, so it will be life size! Don't tell the NFL they will probably fine us for "rebroadcasting with out the expressed written consent of the NFL". Our neighbors are having parties so they should enjoy the outside broadcast too!
Hope everyone has a great weekend!
Erin
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