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Originally uploaded by buckley04@verizon.net
Saturday, November 29, 2008
Hey everyone. I hope you all ate a lot...I know we did. Jed did great. He made it all day and ate pretty good. The day was great. Gram and Jack came up and Felicia was with them, she had driven down from Yale for a quick visit. It was great to see her. Gram B was there and Bill and Beth and Tiersa's parents too. Plus all of us. 16 all together I think. The food was awesome. Savannah made cranberry salsa, Jed made corn bread muffins and I made the "green bean casserole" oooohhhh! There was so much food it was crazy. We rolled home and slept well! Grace and I went shopping yesterday but not for gifts! Danny gave me my gift early..gift cards...so I could go shop! I did too, I spent it all on me, except for a few shirts for Jed and 1 for Savannah and 1 for Dan everything thing else I bought was for me! It was fun and where we went we missed all the crowds! Old Navy wasn't all that crowded. We stayed away from the mall and got no where near wal-mart! We ended up going back there last night because I bought this awesome coat but when I got home Savannah and Karli said I needed a size smaller. Jed and I went to Mom and Dad's. Livi was there with Adam and Tiersa and dessert! I left Jed there and G and I went back to Old Navy, of course they did not have the coat in my size so I just got t-shirts and stuff....what I always wear. Today I don't think we are doing much, I am going to walk with G but then I need to do some knitting or I will have to go buy gifts Dan might be headed to Guitar Center to check out the deals I know Jed will sleep as long as possible!. Tomorrow DJ is getting baptized at his church and he invited us so Jed and I are going. I think that's about it. Not too much happening. Hi to Pete and Trish, thinking of you guys. Hi to LV and LV's Mommy, hope all is well. Christie, you have been very quiet lately, no comments?!! I will put the link up on the right for our pics. They are ok, not that exciting!
Love Jed and Kristin
Love Jed and Kristin
Tuesday, November 25, 2008
Hey, well it was a no go for chemo again today!. His ANC is up to 280 and his white count is 1.4 but still not up where it needs to be to start this. Jed, of course, was not that sad to leave without chemo. I am kind of glad too. I was worried he would be sick for Thanksgiving and he loves Thanksgiving! So hopefully now since he has not had chemo in 3 weeks he will feel good and be able to eat. This day did not start off well anyway. I had a prescription for his EMLA cream that he uses on his port to numb it. I dropped it off a week ago Tuesday at our pharmacy, when I when to pick it up Thursday morning they told me they could not get it. I CALLED and ASKED CVS if they had it and they said yes if you bring us the prescription before 3pm Thursday we will have it Friday. Danny and I stopped Saturday to pick it up and they said "oh, it will be in Monday". I went there last night to pick it up.......yup you guessed it...they couldn't get it, now why do these places not call me and tell me this??? And why did they tell me they could get it when they couldn't!!!!! I was so upset, this creme is vital in helping to keep Jed calm. We put it on before we leave and by the time they access his port it is nice and numb. I spent an hour in the parking lot at CVS calling every pharmacy I could think of. I know I racked up a nice phone bill with all the 411s I dialed. Needless to say I just wanted to cry. Jed handled it very well. We put the creme on when we got there. Jed likes it to be on for at least an hour and a half but we could only wait an hour....AND Holly was off today. Jed really did handle all the little changes well. So anyway I think the infusion room nurse was glad the Jed was not ready because we didn't get counts back until 11, and then he had to go pee to check his PH level...it takes him forever to pee and he is never ready the first time. If he had gotten chemo today we would not have started until after 12 and it takes 5-7 hrs depending on his hydration. I know nurse Suzanne had to be relieved that we left! I did end up getting his EMLA at the pharmacy at the hospital. Then there was a problem with his morphine prescription!!!!!!! oh my. That added almost an hour to our wait.
But all is well, Jed is tired...from the stress! The good part was that Hop drove us today, I feel like a slacker when I don't drive us but it's nice sometimes! We will try again next week!
Tomorrow Jed is going shopping with Nana in the morning and then he is making corn bread tomorrow afternoon. Savannah is making cranberry salsa...awesome.... I have been given the only task I am qualified for, the green bean casserole!!!!!!! I can handle that. We are all headed to Adam's for the good stuff.
We had dinner Sunday at mom and dad's, Livie was there. oh Adam and Tiersa too but Livi was there. I knitted her a pair of UGGS and a fuzzy sweater for Christmas, I took them to try them on her, glad I did, I gave them to her right then because she will probably outgrow them by Christmas!!!! She is her same old squeezy self, trying so hard to talk!
So that's all for now, I'm sure I'll have pics from the holiday. We wish everyone a great turkey day. Enjoy your families.
But all is well, Jed is tired...from the stress! The good part was that Hop drove us today, I feel like a slacker when I don't drive us but it's nice sometimes! We will try again next week!
Tomorrow Jed is going shopping with Nana in the morning and then he is making corn bread tomorrow afternoon. Savannah is making cranberry salsa...awesome.... I have been given the only task I am qualified for, the green bean casserole!!!!!!! I can handle that. We are all headed to Adam's for the good stuff.
We had dinner Sunday at mom and dad's, Livie was there. oh Adam and Tiersa too but Livi was there. I knitted her a pair of UGGS and a fuzzy sweater for Christmas, I took them to try them on her, glad I did, I gave them to her right then because she will probably outgrow them by Christmas!!!! She is her same old squeezy self, trying so hard to talk!
So that's all for now, I'm sure I'll have pics from the holiday. We wish everyone a great turkey day. Enjoy your families.
Saturday, November 22, 2008
Hey, I know I have been delinquent in posting, not much happening here. Jed is doing ok. He heads over to his dad's today for a couple of hours to see his brother and sister. Tomorrow I think an old friend from Penn State is stopping to visit, Dan Alexander is a member of KA, our previous fraternity. He has kept in contact, we love him and hope he gets here.
The weather SUCKS! I had an appointment last night at 6pm, the roads were so bad from our tiny snow and the stupid people driving that we traded for my mom's car, big Lincoln suv, and parked our little sled. It is so sad that for Dan and I our 'date' was a trip to my doctor's! But we did go get Mexican food afterward! WHOO HOO! The roads were slippery but the reaction of the people on the road made everything so much worse!!!! It is cold and nasty, I am not a fan of this weather. I think if I was rich and had very good winter gear and could afford to ski it would be different but alas not to be, so I just really dislike the winter. Mom got Jed a new winter coat the other day...just in time!
Savannah's senior class had a tragedy this week. One of their top students, a swimmer headed to Olympic trials in 2012 suffered heart failure in the pool and died the next day at Hershey med. Center. So sad. Red Lion has had more than it's share of crappy events.
Hope everyone is doing ok. if anything exciting happens I will let ya'll know!!!
Love J & K
The weather SUCKS! I had an appointment last night at 6pm, the roads were so bad from our tiny snow and the stupid people driving that we traded for my mom's car, big Lincoln suv, and parked our little sled. It is so sad that for Dan and I our 'date' was a trip to my doctor's! But we did go get Mexican food afterward! WHOO HOO! The roads were slippery but the reaction of the people on the road made everything so much worse!!!! It is cold and nasty, I am not a fan of this weather. I think if I was rich and had very good winter gear and could afford to ski it would be different but alas not to be, so I just really dislike the winter. Mom got Jed a new winter coat the other day...just in time!
Savannah's senior class had a tragedy this week. One of their top students, a swimmer headed to Olympic trials in 2012 suffered heart failure in the pool and died the next day at Hershey med. Center. So sad. Red Lion has had more than it's share of crappy events.
Hope everyone is doing ok. if anything exciting happens I will let ya'll know!!!
Love J & K
Tuesday, November 18, 2008
Hi guys,
So no chemo today. His white count is now .4. Maybe next week??? Wait and see... as usual. He was pretty perky when he heard the news that we could leave! We went up to the pulmonary lab so he could get his inhaled antibiotic before we ran out of there. He was actually pretty perky on the ride up to clinic. He was singing and playing his DS. I on the other hand was hyperventilating! The chemo Jed was supposed to get today takes ALL day and the later we are getting there the later the nurses have to stay at the end of the day , we were late getting out of the house...surprise. Then of course there was traffic,,,stupid people. The left lane is for PASSING, if you are not passing move over, you are not the only person on the road!!!! On top of the usual fun I forgot to pick up his EMLA creme the night before so we had to wait in clinic for an hour until his port site was numb, and that deviation in his clinic ritual sends him into high anxiety mode. Such a relief to pull into the parking lot and thank god for Holly... she fixed him! After all these years you'd think I'd have all this stuff down pat....nope not me! Oh well. I do try though!
So after we left clinic we went to the mall so he could return a game that didn't work and stopped at Target to pick up some pictures...then I remembered at the last minute I mail ordered them...:). We stopped at the grocery store and headed home. Busy day for Jed! He was tired when we got home. He had his PJ pants on in less than 5 minutes after walking in the door! He has the beginnings of an infection on his big toe..ingrown toenail, I'm sure it's my fault. He has to soak it in Epsom salt and he has an oral antibiotic to take. The fun part is that this drug only comes in liquid (which he WILL NOT take) and a capsule which he says he CAN"T swallow. Nothing like adding 1 more little stressor to the mix. Fun
We ran out to give Hop a ride just a little bit ago. Mommo's car will be finished tomorrow..new computer thing. It has been a little scary, since Jed got sick and my old Subaru fell apart we are working with 1 car (Danny rides his bike a lot) then mom's car went on the fritz and then I hit the curb and flattened my tire....we were down to 1 car for all 4 of us! My car has a new shiny tire and mom's car will be picked up tomorrow so there is a little more of a buffer! I was afraid if Dad's car had a problem we would be down to just motorcycles...and it's cold! The days of Danny riding his bike are going away...so Jed and I will be hanging out here...(that's fine with Jed)! Savannah is home most days by noon so if I really need something I have her car. depending on where she goes to college I might have her car a lot! It really is getting cold out....i dislike that very much.
Jed and Danny are watching Get Smart right now. But they are both talking so much I'm not sure how they can follow the movie!
I mentioned before that a family we met in the hospital, Emily and James Alivia's parents, had adopted a baby boy. Well, 5 days before he was legally theirs his birth mother came and got him. How cruel is that? From what I have heard she is not mother of the year ( to all her other kids). That child could not have had a better home than with Emily and James. How much is 1 family supposed to handle? Loosing Alivia is beyond comprehension and now they have lost this baby that has been theirs for a couple of months now. I can't think of anything more hurtful. It's so sad. Cross your fingers, maybe she will change her mind..AGAiN.
well I guess that's all the news here and I have vented so it's all good now. I hope all of you are doing well....stay warm.
Love Jed and Kristin
So no chemo today. His white count is now .4. Maybe next week??? Wait and see... as usual. He was pretty perky when he heard the news that we could leave! We went up to the pulmonary lab so he could get his inhaled antibiotic before we ran out of there. He was actually pretty perky on the ride up to clinic. He was singing and playing his DS. I on the other hand was hyperventilating! The chemo Jed was supposed to get today takes ALL day and the later we are getting there the later the nurses have to stay at the end of the day , we were late getting out of the house...surprise. Then of course there was traffic,,,stupid people. The left lane is for PASSING, if you are not passing move over, you are not the only person on the road!!!! On top of the usual fun I forgot to pick up his EMLA creme the night before so we had to wait in clinic for an hour until his port site was numb, and that deviation in his clinic ritual sends him into high anxiety mode. Such a relief to pull into the parking lot and thank god for Holly... she fixed him! After all these years you'd think I'd have all this stuff down pat....nope not me! Oh well. I do try though!
So after we left clinic we went to the mall so he could return a game that didn't work and stopped at Target to pick up some pictures...then I remembered at the last minute I mail ordered them...:). We stopped at the grocery store and headed home. Busy day for Jed! He was tired when we got home. He had his PJ pants on in less than 5 minutes after walking in the door! He has the beginnings of an infection on his big toe..ingrown toenail, I'm sure it's my fault. He has to soak it in Epsom salt and he has an oral antibiotic to take. The fun part is that this drug only comes in liquid (which he WILL NOT take) and a capsule which he says he CAN"T swallow. Nothing like adding 1 more little stressor to the mix. Fun
We ran out to give Hop a ride just a little bit ago. Mommo's car will be finished tomorrow..new computer thing. It has been a little scary, since Jed got sick and my old Subaru fell apart we are working with 1 car (Danny rides his bike a lot) then mom's car went on the fritz and then I hit the curb and flattened my tire....we were down to 1 car for all 4 of us! My car has a new shiny tire and mom's car will be picked up tomorrow so there is a little more of a buffer! I was afraid if Dad's car had a problem we would be down to just motorcycles...and it's cold! The days of Danny riding his bike are going away...so Jed and I will be hanging out here...(that's fine with Jed)! Savannah is home most days by noon so if I really need something I have her car. depending on where she goes to college I might have her car a lot! It really is getting cold out....i dislike that very much.
Jed and Danny are watching Get Smart right now. But they are both talking so much I'm not sure how they can follow the movie!
I mentioned before that a family we met in the hospital, Emily and James Alivia's parents, had adopted a baby boy. Well, 5 days before he was legally theirs his birth mother came and got him. How cruel is that? From what I have heard she is not mother of the year ( to all her other kids). That child could not have had a better home than with Emily and James. How much is 1 family supposed to handle? Loosing Alivia is beyond comprehension and now they have lost this baby that has been theirs for a couple of months now. I can't think of anything more hurtful. It's so sad. Cross your fingers, maybe she will change her mind..AGAiN.
well I guess that's all the news here and I have vented so it's all good now. I hope all of you are doing well....stay warm.
Love Jed and Kristin
Sunday, November 16, 2008
Hey all. an update....... Jed felt pretty good this weekend. Yesterday he hung out and slept most of the day & then I took him out to eat......I had dessert & coffee, he had a steak and half my dessert! oh and his usual spinach cheese dip appetizer stuff. I should buy stock in our local restaurants! It seems to be our biggest expense! Food just tastes better out somewhere...unless it's at my mom's. Eating out seems to make Jed very happy and that is our main goal here!
Everyone slept late yesterday.....except me so everyone was up very late last night...2-3am, I just wanted to go to sleep but EVERYONE was so loud! Today we got up and drove to Penn State for the Family Carnival. They unveiled the 2009 logo, I posted it under here. It's pretty cool. The kid has a knight's helmet on like in the 4 diamonds story. We met Brent at The Waffle Shop for breakfast, Jed cannot go to to PSU without eating there. Jed had a blast, he played with all his "people"! He wore himself out! We left about 4pm and stopped at McDonald's...of course. He ate his Happy Meal and was asleep in 20 mins! It snowed on the way home, it didn't stick to the road, just made seeing hard. It was very windy and as we were going up the mountain the temp went from 39 to 29, thank goodness it went back up again as we got further south. Savannah and Newman (Katie) followed us, nothing like driving in zero visibility over a windy, snowy mountain while you stare in your rear view mirror to make sure your kid is ok! and then I did one of those weird things that I think only parents of sick kids do, Jed had been sleeping for over 2 hours and had not moved so as we were flying down the highway I casually reached over and felt his wrist....for a pulse, sick I know but...well, oh well. He was fine by the way! So we are home, and Jed is awake...he had a long nap! He is very tired though and kinda pale. We had to stop at my parents on the way home because he knew he was missing a pork chop dinner there today and wanted to pick up a to-go bag!
So, the carnival was fun...as always and it was great to see everyone....as always and the new logo is cool. Now both kids want the new logo t-shirts!
I am going to try to convince Jed to go to sleep so then maybe I can too.....geeze i hope! as soon as Savannah sends me the pics I will put them up. oh and she applied to Penn State yesterday!
Love Jed and Kristin
Everyone slept late yesterday.....except me so everyone was up very late last night...2-3am, I just wanted to go to sleep but EVERYONE was so loud! Today we got up and drove to Penn State for the Family Carnival. They unveiled the 2009 logo, I posted it under here. It's pretty cool. The kid has a knight's helmet on like in the 4 diamonds story. We met Brent at The Waffle Shop for breakfast, Jed cannot go to to PSU without eating there. Jed had a blast, he played with all his "people"! He wore himself out! We left about 4pm and stopped at McDonald's...of course. He ate his Happy Meal and was asleep in 20 mins! It snowed on the way home, it didn't stick to the road, just made seeing hard. It was very windy and as we were going up the mountain the temp went from 39 to 29, thank goodness it went back up again as we got further south. Savannah and Newman (Katie) followed us, nothing like driving in zero visibility over a windy, snowy mountain while you stare in your rear view mirror to make sure your kid is ok! and then I did one of those weird things that I think only parents of sick kids do, Jed had been sleeping for over 2 hours and had not moved so as we were flying down the highway I casually reached over and felt his wrist....for a pulse, sick I know but...well, oh well. He was fine by the way! So we are home, and Jed is awake...he had a long nap! He is very tired though and kinda pale. We had to stop at my parents on the way home because he knew he was missing a pork chop dinner there today and wanted to pick up a to-go bag!
So, the carnival was fun...as always and it was great to see everyone....as always and the new logo is cool. Now both kids want the new logo t-shirts!
I am going to try to convince Jed to go to sleep so then maybe I can too.....geeze i hope! as soon as Savannah sends me the pics I will put them up. oh and she applied to Penn State yesterday!
Love Jed and Kristin
THON_09_LOGO
THON_09_LOGO
Originally uploaded by buckley04@verizon.net
THON 2009....the logo was revealed today!!!!!! THON is coming!!\
Saturday, November 15, 2008
Jed and DJ
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Originally uploaded by buckley04@verizon.net
This was Sunday when Amy and D brought over all the cards his class at his new school made for Jed!
Thursday, November 13, 2008
Hey. So we went to the mall yesterday to pick up a game Jed had pre-ordered, it was all he talked about while we were in the ED Monday and Tuesday! Then he took me to Chili's with his gift card. Danny decided not to go and Savannah had to work so it was just Jed and I. As we were pulling into Chili's I clipped the curb and flattened my tire...nice. I guess the lessen here is driving when you are tired is not wise. So Danny ended up coming out anyway...he got dessert after he changed my tire! Today we went to clinic to see if he needed blood....nope, his counts suck but not enough to need blood! His white count still isn't even 1 yet! But he is feeling ok, that's all that matters. I had a hard time getting him to leave, he started doing crafts with the PSU kids that were there and he wouldn't leave! We finally are home, my wheel is getting a new tire put on it & I am going to take a nap! Jed is playing Wii..of course! It was nice to see everyone at clinic, it has been a month!!!!
Love J & K
Love J & K
Wednesday, November 12, 2008
Hi again. So anyway here's the dirt....well story anyway. Jed had a great weekend like I said before but by Sunday night he was pale & tired. I just figured the weekend knocked him out. Monday he cried when I woke him up, not that uncommon...he is not fond of getting up before noon. He stayed upstairs all day Monday and about an hour before the teacher was supposed to be here he started crying that the pain was much worse than normal. Of course I immediately thought it was his "schoolitis". But he wanted me to call clinic and they said by the time we got there he would have to go to the ED. He said he wanted to go anyway so I knew he was not just trying to avoid school work. I still kinda had a few doubts though when he asked to stop at McDonald's on the way up! He ate some chicken strip things and some fries. He said "well I know it's not my pancreatitis because that food would have made it 10 times worse"! I don't know if he was really hungry or just testing a theory. We waited barely an hour in the waiting room...that's fantastic but then we hit a wall, we never left there! The 7th floor was full so he stayed in the ED the whole time! His pancreas levels were elevated when we got there but by the next morning they were fine again. His stomach pain was lessened with IV morphine...of course and he needed blood. His white count was only .3, and everything else was low too. He got some blood and slept a lot and got lots of morphine and woke up yesterday about 5pm ready to go! We were out of there by 5:30! Deana, our nurse practitioner, came down and got us out of there quickly! That was the 1 good thing about not going upstairs, we got discharged fast! So by the time we left I had been awake for around 36hrs and Jed had had a good rest. He wanted steak for dinner, so of course we stopped at the store on the way home, he got steaks, mashed potatoes and Cinnamon buns. I was trudging through the parking lot and he was dancing and howling at the moon, yeah guess the blood helped! I made all the stuff when we got home. Thank goodness he was asleep buy 10:30pm, I couldn't have made it any further! So now he is feeling ok. We go back in the morning for counts and probably more blood. He didn't get his 8hr chemo yesterday naturally so hopefully his counts will be high enough by next Tuesday to start. They only really bad things about not going upstairs are comfort things..mainly for me! I had a waiting room type chair, no cell service, the bathroom was down the hall and I didn't know the nurses so I didn't leave unless I REALLY had to pee or to send a quick text home. By yesterday afternoon I got brave enough to run to the cafeteria , only because Jed didn't like the cereal selection the nurses had & by then I REALLY needed coffee & chocolate. So that is the latest excellent adventure of Jed and Kristin. i don't care to repeat it again but odds are...we will. The only thing that I was told this time that I haven't heard before was that Jed has a heart murmur. They told me that it is not uncommon and only is really noticeable when his counts are low because his heart has to work so hard to get the blood to where it needs to be. No one seemed worried about it and when I asked they said it's not a big deal at all. Ok, I guess in the grand scheme of things they are right but I am not telling Jed because he would stress about it.
Everyone else here is ok. Savannah got all our stuff packed in case we needed it, now I have to go unpack it! She is having work issues. She was only hosting, then she started to serve and really didn't like it. She wanted to go back to just hosting but the bosses there won't give her all her hosting shifts back so she will only work 2 days a week & that is not enough $ for her. I told here it's completely up to her where she works but to drive her car she has to have a job. I can't afford to gas her up and i don't want her taking money from her savings just to drive. So we will see what happens. No matter where you work there are jerks.....everywhere!
Ok, I guess that's it for now. I played with my camera all night and took all kinds of pictures in our little room and when I put the card in to load them to my laptop there were only 2 pics on the memory card.....weird.
We are headed to the mall when Danny gets home so Jed can pick up a game that he ordered & I can get him a new Sim card for his phone, it just stopped working...weird, again. Then Jed is taking us to to dinner at Chili's! He has a gift card from there that his school nurse, The wonderful Mrs. Kirby, gave him. Not a bad deal, I'm up for some fajitas....and some more sleep!
Love Jed and Kristin
Everyone else here is ok. Savannah got all our stuff packed in case we needed it, now I have to go unpack it! She is having work issues. She was only hosting, then she started to serve and really didn't like it. She wanted to go back to just hosting but the bosses there won't give her all her hosting shifts back so she will only work 2 days a week & that is not enough $ for her. I told here it's completely up to her where she works but to drive her car she has to have a job. I can't afford to gas her up and i don't want her taking money from her savings just to drive. So we will see what happens. No matter where you work there are jerks.....everywhere!
Ok, I guess that's it for now. I played with my camera all night and took all kinds of pictures in our little room and when I put the card in to load them to my laptop there were only 2 pics on the memory card.....weird.
We are headed to the mall when Danny gets home so Jed can pick up a game that he ordered & I can get him a new Sim card for his phone, it just stopped working...weird, again. Then Jed is taking us to to dinner at Chili's! He has a gift card from there that his school nurse, The wonderful Mrs. Kirby, gave him. Not a bad deal, I'm up for some fajitas....and some more sleep!
Love Jed and Kristin
Monday, November 10, 2008
Hey all. How was your weekend?? Ours was great, we love canning weekends. We had 4 gamma Phi girls and 2 Acacia guys here for the weekend. They canned Saturday and a little bit on Sunday and raised over $$3,000.00, that is awesome. They all went out Saturday night to The Hungry Parrot and bowling, Jed was in heaven. Jared was here and went canning on Saturday too. PSU lost, that was the only crappy part of the weekend! These kids just amaze me, they NEVER get aggravated with Jed, no matter how many times he wants to play Wii, they do whatever he wants to do he whole time they are here!
On Sunday DJ and Amy stopped by, DJ's class in his new school made cards to get to know Jed, it was REALLY nice. Amy went in to do a craft and DJ said he wanted his new friends to get to know Jed. So cool, D is an awesome kid. Congrats to Amy's friend Kim and her family, they are getting a new baby on December 1st! Another little girl, Kiara is getting a sister!!!!
Speaking of new babies I didn't mention before but a family we got to know on the 7th floor, Alivia's, just adopted a baby boy, Griffin....we are so happy for you Emily and James.
I think that's about it, Jed is ok, he is tired and didn't feel well last night but I think he is just worn out from the party weekend he had. Of course he is feeling bad also because he has school tonight,,,,,,,,,this drives me nuts. He is fine once she is here but he seems to just anticipate it so much and he worries about his homework. I know he has trouble concentrating for long and he gets tired easily but it drives me nuts how much he stresses about making sure he gets nothing wrong. He absolutely hates getting something wrong and he would rather avoid it or put it off as long as possible instead of doing it and getting something wrong. It's hard also because when I make him work on his homework and he starts to feel bad I can't tell him to keep working, I have to let him lie down or sleep and then he starts to freak out because he slept when he needed to be doing his homework. It is a vicious circle! I can't wait until he is back at school and leading a normal life....but I guess no one wants that more than him. He said the other day,"I wish I was in school because I think I would like it, I don't really remember how it was to go everyday". Poor guy. I told him to just keep thinking it won't be long and he will be going to school everyday and not even thinking about all of this anymore.
He starts 4 weeks of 8 hour chemos every Tuesday tomorrow. On the 5th week he has a spinal tap and then starts 5 days of steroids & then he should have a month with just home meds again. That's the plan, we will see what happens.
I just got a text from Savannah, she doesn't feel well either. Oh yea. Welp, the laundry calls and I have some knitting to do...guess what people are getting for christmas!!!!????? Sorry in advance to all the poor people getting knitted gifts from me!
Love Jed and Kristin
Pics under here and as soon as I have some from the bowling trip I will put up a link
On Sunday DJ and Amy stopped by, DJ's class in his new school made cards to get to know Jed, it was REALLY nice. Amy went in to do a craft and DJ said he wanted his new friends to get to know Jed. So cool, D is an awesome kid. Congrats to Amy's friend Kim and her family, they are getting a new baby on December 1st! Another little girl, Kiara is getting a sister!!!!
Speaking of new babies I didn't mention before but a family we got to know on the 7th floor, Alivia's, just adopted a baby boy, Griffin....we are so happy for you Emily and James.
I think that's about it, Jed is ok, he is tired and didn't feel well last night but I think he is just worn out from the party weekend he had. Of course he is feeling bad also because he has school tonight,,,,,,,,,this drives me nuts. He is fine once she is here but he seems to just anticipate it so much and he worries about his homework. I know he has trouble concentrating for long and he gets tired easily but it drives me nuts how much he stresses about making sure he gets nothing wrong. He absolutely hates getting something wrong and he would rather avoid it or put it off as long as possible instead of doing it and getting something wrong. It's hard also because when I make him work on his homework and he starts to feel bad I can't tell him to keep working, I have to let him lie down or sleep and then he starts to freak out because he slept when he needed to be doing his homework. It is a vicious circle! I can't wait until he is back at school and leading a normal life....but I guess no one wants that more than him. He said the other day,"I wish I was in school because I think I would like it, I don't really remember how it was to go everyday". Poor guy. I told him to just keep thinking it won't be long and he will be going to school everyday and not even thinking about all of this anymore.
He starts 4 weeks of 8 hour chemos every Tuesday tomorrow. On the 5th week he has a spinal tap and then starts 5 days of steroids & then he should have a month with just home meds again. That's the plan, we will see what happens.
I just got a text from Savannah, she doesn't feel well either. Oh yea. Welp, the laundry calls and I have some knitting to do...guess what people are getting for christmas!!!!????? Sorry in advance to all the poor people getting knitted gifts from me!
Love Jed and Kristin
Pics under here and as soon as I have some from the bowling trip I will put up a link
Dudes
042
Originally uploaded by buckley04@verizon.net
Jed's great buddy Brent, are we looking at a future ACACIA member??
WOW~
020
Originally uploaded by http://www.flickr.com/people/buckleysmithslatton/
There is nothing like a garbage bag of money!!!
Saturday, November 8, 2008
Hey all, just a quick note here is a link to a page about a little boy in Australia who has relapsed for the 2nd time & has meningitis. His father is part of the relapsed ALL listserve I belong to. Keep him in your thoughts. The way his father describes him is so funny and so typical of all the sick kids I know.
http://www.caringbridge.org/visit/nathanielcervas
Here is a quote from an email his Dad wrote, it really sums up how we feel about these kids:
"But above all it is Nathaniel himself for whom I now have the greatest love and respect. He was just a baby when he started. Now you could only call him an intelligent person, who has dealt with his life of extreme disadvantage with kindness, forbearance, humour and dignity. Quite frankly it is a privilege to know him."
Cross your fingers for this little boy he is really fighting. It is all so unfair.
Love J & K
http://www.caringbridge.org/visit/nathanielcervas
Here is a quote from an email his Dad wrote, it really sums up how we feel about these kids:
"But above all it is Nathaniel himself for whom I now have the greatest love and respect. He was just a baby when he started. Now you could only call him an intelligent person, who has dealt with his life of extreme disadvantage with kindness, forbearance, humour and dignity. Quite frankly it is a privilege to know him."
Cross your fingers for this little boy he is really fighting. It is all so unfair.
Love J & K
Thursday, November 6, 2008
Hey, Jed was awake for a couple of hours. He feels pretty bad, very nauseous. He is asleep again, I hope he sleeps all night. I'm not sure what's going on with him this stuff just starts and the goes away, if he is still this bad in the morning I will call the clinic and see if there is anything I can do. Maybe it's just a bug. Still no fever though.....that's very good. He woke up about 4:30pm crying because he didn't get any homework done today. Of course that makes me feel great because I told him he had to have his homework finished by Sunday night so when I wake him on Monday he won't start flipping out about getting it done. Danny and I tried to explain that he has to feel better to do the homework. He sometimes just gets so focused on something and he will not calm down or let it go. He came down and gathered all his books and papers, organized everything, gave me instructions on what not to touch and then he was sick again. He threw up and went back up to lay down. I was working on his computer, trying to get rid of the lovely virus he seems to have acquired. When I didn't get an answer to a question I asked I realized he was asleep. I gave up on his computer for now. Savannah tried yesterday and I worked on it last night and today...still has it. The cleaner program just can't get rid of it. I guess I have to take it somewhere. I won't even describe what was popping up when he went to his home page....oh my!!!! So now I have it to the point that nothing comes up except the cleaner program over and over trying to get rid of the virus. Nice.
So anyway Jed needs to get better we have PSU kids coming this weekend for a canning trip. If you are out anywhere and see Penn State kids asking for money....give up your change!!!!! I think we are supposed to have 7 kids on Friday and LV is coming Sat so then we have 8. I am making chili because I don't know what else to feed them! We always look forward to our canning weekends. I know even when Savannah goes away to college she will come home for these weekends.
So anyway, Jed is sleeping, Danny has to get up at 1:30am for work so he is sleeping and Savannah just left to go meet friends. I am here....talking to you! Well it's more like talking to myself! Welp I guess that's about it, Jed and his computer seem to have a virus, Danny is working more overtime so he is trying to get more sleep and Savannah has a life!
Love Jed and Kristin
So anyway Jed needs to get better we have PSU kids coming this weekend for a canning trip. If you are out anywhere and see Penn State kids asking for money....give up your change!!!!! I think we are supposed to have 7 kids on Friday and LV is coming Sat so then we have 8. I am making chili because I don't know what else to feed them! We always look forward to our canning weekends. I know even when Savannah goes away to college she will come home for these weekends.
So anyway, Jed is sleeping, Danny has to get up at 1:30am for work so he is sleeping and Savannah just left to go meet friends. I am here....talking to you! Well it's more like talking to myself! Welp I guess that's about it, Jed and his computer seem to have a virus, Danny is working more overtime so he is trying to get more sleep and Savannah has a life!
Love Jed and Kristin
Hi all. Jed is ok. Seems to having a diarrhea issue but it is slowing down now. I have no idea where this stuff comes from, it just appears and then goes away...weird. He is getting better. anyway more later.......My reason for this update is really to tell you:
Everyone sign up for igive......go to igive.com and select Penn State Dance Marathon as your charity, then do all of your Christmas shopping thru there and THON gets $$$$$!!!! Even just surfing the stores can win THON 50,000.00! Every store you can think of is on there. Even ebay!!! sign up
Love J & K
ok, now he is pukey too...no fever though, the life of a chemo kid is always unpredictable...and sometimes unpleasant, poor guy
Everyone sign up for igive......go to igive.com and select Penn State Dance Marathon as your charity, then do all of your Christmas shopping thru there and THON gets $$$$$!!!! Even just surfing the stores can win THON 50,000.00! Every store you can think of is on there. Even ebay!!! sign up
Love J & K
ok, now he is pukey too...no fever though, the life of a chemo kid is always unpredictable...and sometimes unpleasant, poor guy
Tuesday, November 4, 2008
Saturday, November 1, 2008
So today was the toy ride and the weather was perfect. Jed went, he rode with Hop. He was up and down and all over the place. Happy 1 minute and crying the next. Feeling horrible and then fine. He was crabby but talkative, nothing was right but he wanted to go......oh yeah. As soon as we got there he wanted me to call someone to drive the hour up and drive him home, he said "tell them to hurry"! Well we went up to the 7th floor to see who was around. We saw the lovely Denise...HI!!!! He said hi to some of his nurses and Dr. Neely and Dr. Khan. We got to see Katrina and Diane from child life too. It was nice but very weird. I don't think we have been away from them for this long since Jed got sick. So after our trip upstairs Jed was recovered enough to make the ride home. We took the back way, much better scenery and we didn't have to go 90 mph. Geeze, on the way up the group was so spread out we were doing 80-90 mph to keep up. I wouldn't have cared but my helmet started to lift up and loosen up. So I spent the majority of the ride doing 90 either with my helmet flying behind me like a hood or with just 1 hand while the other one was holding the helmet on. I finally could not take it anymore, I was afraid it would fall off and hit someone behind me..Dad and Jed! We all stopped and Danny helped me fix it. We ended up right back in the pack because there were sooooo many bikes!!! Anyway we made it and the ride home was wonderful. I refuse to think about the fact that this weather will be very short lived...so sad.
Of course we got home and I suddenly remembered there was no juice, no milk, no nothin'! Jed and I went to the store.......he was crying about how bad he felt but he wanted to go to the store. He spent the whole trip telling me, where to park, what to buy, why I should by this and not that. Very interesting. We went to McDonalds for my coffee and their shakes. The closest McD's was so crowed there was no place to park. We went to the other 1 and Jed flipped out because he wanted me to go in and not the drive through...they wait on the people inside first ya know..ok. Whatever, he calmed down until they told us they were out of shakes, and yogurt fruit things and cookies!!!!!!!!!!!!!!!!!!!! Hey they had my coffee!!!! Someone was looking out for my mental health. We came home and made our frozen pizza and the Mrs. Smith's apple pie is out of the oven waiting to be mated with the vanilla ice cream so all is well....for the moment. He is VERY moody today. And no I have not detoxed from the sugar of Halloween....next week, really! Maybe I might need rehab?? Ya right who has time!
Oh and the other slipper is FINISHED!!!!!! of course Jed had to sit down and show me how 1 was a tad bigger than the other and how I should fix that for the next pair.....next pair.HA! Now I know why I only make stuff for Livi, her stuff is small and she doesn't know if the size is off or if it's a little sideways.
I think that's it. There were a lot of bikes and a lot of toys. I bought toys I knew Jed would like to win at hospital bingo.....just in case!!
Now Jed is walking around the house telling everyone he is sorry for the way he was acting....now who feels like a creep....yup me! Oh well.
Time for pie, that makes it all better, just like cookies.
3 more days.....don't forget to VOTE!
Love Jed and Kristin
some pics under here
Of course we got home and I suddenly remembered there was no juice, no milk, no nothin'! Jed and I went to the store.......he was crying about how bad he felt but he wanted to go to the store. He spent the whole trip telling me, where to park, what to buy, why I should by this and not that. Very interesting. We went to McDonalds for my coffee and their shakes. The closest McD's was so crowed there was no place to park. We went to the other 1 and Jed flipped out because he wanted me to go in and not the drive through...they wait on the people inside first ya know..ok. Whatever, he calmed down until they told us they were out of shakes, and yogurt fruit things and cookies!!!!!!!!!!!!!!!!!!!! Hey they had my coffee!!!! Someone was looking out for my mental health. We came home and made our frozen pizza and the Mrs. Smith's apple pie is out of the oven waiting to be mated with the vanilla ice cream so all is well....for the moment. He is VERY moody today. And no I have not detoxed from the sugar of Halloween....next week, really! Maybe I might need rehab?? Ya right who has time!
Oh and the other slipper is FINISHED!!!!!! of course Jed had to sit down and show me how 1 was a tad bigger than the other and how I should fix that for the next pair.....next pair.HA! Now I know why I only make stuff for Livi, her stuff is small and she doesn't know if the size is off or if it's a little sideways.
I think that's it. There were a lot of bikes and a lot of toys. I bought toys I knew Jed would like to win at hospital bingo.....just in case!!
Now Jed is walking around the house telling everyone he is sorry for the way he was acting....now who feels like a creep....yup me! Oh well.
Time for pie, that makes it all better, just like cookies.
3 more days.....don't forget to VOTE!
Love Jed and Kristin
some pics under here
ad tiersa livi
ad tiersa livi
Originally uploaded by buckley04@verizon.net
Wow, the only reason i let this group in my house is the lamb was cute...the other two...not so much!
bopeep in the mirror!!!
bopeep in the mirror
Originally uploaded by buckley04@verizon.net
Everyone loves this lamb, see nutty bopeep in the mirror???
my little lamb
my little lamb
Originally uploaded by buckley04@verizon.net
OMG is she just the squeeziest thing?????
despite the look on her face she really does like me...i think!
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