Well, it is 7:51pm CST and we've made it home long enough to unload the car and put it all in the living room and me to start the latest update.
It has seemed like a long, dreary rollercoaster ride this past week. Everything we were told a month ago to expect has decided to creep up on Justin a month later.
I previously noted his bout with his 2nd UTI, they claimed another round with dsyreflexia but Justin insists "NO", he said there was no 'migraine' headache so he thinks they misjudged that one (or jumped too fast to blame something) and has been experiencing reflex which I'm confused over since they changed him over to the condom catheter the last few days---sorry to anyone that doesn't understand (henri and mama hen and all you nurses do). This form of catheter is supposed to help him not wet himself since he cannot yet control his bladder; however, he has done so twice just on Saturday which means somethings wrong with the catheter or the installation of it!! He's only had one other time like this and it was because he was holding 1100cc. That's not the case with these on Saturday. Don't know but hope to have some answers soon.
He's been extremely cold the whole visit with Sunday finding us leaving him with his LSU blanket from shoulders to ankles, a hospital blanket wrapped around neck, shoulders, arms and hands and his LSU taboggin (spelling???) on his head.
The pain in his right shoulder is supposedly tendonitis and he gets treatment tomorrow for that but he said the pain in his left shoulder, shoulder blade and arm hurts 10 times worse. Robyn tried massaging it out and said it hurt so bad it made him tear up (sorry Justin, I know TMI!!) He said he would discuss it with the doc in the morning and see if PT/OT can do their treatment on both sides tomorrow but he said they told him that if this treatment doesn't work then his aggressive rehab schedule will be put off for approximately 4 weeks. I'm trying to stay positive.
PT Beth mentioned Friday that he does miss us when we're gone. He tried making light of it but it concerned me a bit for her to say that in front of him. I guess it's just Mama worrying too much.
We saw him enough on Saturday to have lunch with him and let him say good-bye to Pretzel then we had to make that 5 hour round trip to Augusta to make the visitation swap. Made it back in time to say good-night to him, gather his clothes and head to the hotel to do his laundry.
Today was gloomy with rain again!! Makes for a long day when inside is all you have to look forward to during family time. We fed him again but his appetite seemed less than normal. He kept saying he was okay, just cold. He stayed up late last night doing some research online with his roommate Michael. Being tired could have played a part but he didn't really get out of bed until almost 1pm.
I'm sure this was just another one of those 'stalled' out weeks and I shouldn't worry.
Dad plans to touch base with him on Monday to see how the treatment, etc. went so we'll try to post again when we know something. Only pics I got were on my cell phone and I don't know how to get them to the computer. Anyone that wants to volunteer getting me to send them to your cell phone and then load them and email them to me, I'm willing (I guess too much technology or too tired one--ha).
Love you all, another reminder that prayer, encouragement and support are the ingredients to seeing us all through this journey!!! THANK YOU!!!
Sunday, August 30, 2009
Friday, August 28, 2009
Again we are late with updates
Sorry to all of you that continue to encourage and follow Justin's progress. This week apparently was just meant to be another milestone in his journey.
He started it with a UTI and just all around not feeling good. He did pick out his wheelchair and dad reaffirms he has internal sensation on bladder and bowel. His Asia is an imcomplete Asia B. Mama Hen and others familiar will know that Justin is middle ground with his feeling and sensation. Asia A being the worst case and C being the best.
Still no further developments with his hands but he is using his arms/wrists more without his wrist supports and finds way to accommodate what he needs without full function of his fingers.
He played three rounds of UNO Spin with TR Group and actually had some help with Preston (who of course showed his cards for the most part so others knew what was in his hand but they still managed to win one game and be runner up for another one--lol). I didn't have the camcorder so I have pics on my cell phone. Will have to figure a way to get them loaded to the blog site. He did manage to handle the cards for the most part by himself with his hands/fingers and figured out how to get some Life Saver gummies picked up and into his mouth himself.
He still seemed tired today. Robyn said he had been cold all morning when we got there and was still cold by sun down. Fever came in at 99.0 with BP at 110/64. We'll see how he's feeling in the morning.
We thought he was about to miss out once again on a Push Pass and was hopping mad. I talked with PT Beth who checked into it and was able to get him (and us) signed off. Robyn and I took him and Preston through the tunnel and to CVS where the boy spent a good plenty on a 'projection' clock---he said that way he could just look up at the ceiling and see what time it was everytime a nurse came in there wanting to poke, prod or roll him. The rest of the spending was on "junk" (candy, candy and more candy---he won't need candy for a while).
He said he was just happy to actually be allowed off the premises and feeling half normal.
We brought some home cooking and that seemed to really perk him up today. Nothing fancy, had some homemade tacos with the fixins for lunch and had chili dogs with cheese dip and chips for supper. He's doing cold cut subs Saturday for lunch and said after that, he's open to anything because he's happy and he know whatever it is will be good (ha).
PT Beth did advise me that they believe he has tendonitis in his right shoulder. They are going to do an injection straight into that tendon on Monday morning. It is suppose to go straight to the tendon and help it faster than pills. We ended up to a 'hot/cold' Bengay tonight. Of course, he said he could only feel it on the shoulder area of his arms, nothing through to his elbows. We continue to pray that he will eventually get his touch sensation back that goes with his actual mobility.
Dad not feeling good. He's been down since last week and this visit seems to be taking its toll on him. Of course, he continues to suck it up and do the best he can. Hopefully another doctor visit next week will find the cause enabling a find for a feel better cure.
We'll try to get some more pics and get them posted. He does PT at 8:00 in the morning so he's due to rise early.
Mama Hen--expected Grad day is September 19, he goes to Augusta for approximately 2-3 weeks (Shepherd is hoping for 2 weeks), then he comes back here for Out Patient which is roughly 4-6 weeks. Shepherd is hoping he will be so progressed in rehab that the latter will be for only 4 weeks but will keep him as long as needed (4-6 weeks). We anticipate somewhere around 1st week of November he returns back to Alabama and he's looking forward to 'walking' into SE AL Medical to tell all of you wonderful people "hello"!!!
Appreciate all of you for everything--prayers, understanding, encouragement and support. Love you all and hope everyone is doing okay!!!
He started it with a UTI and just all around not feeling good. He did pick out his wheelchair and dad reaffirms he has internal sensation on bladder and bowel. His Asia is an imcomplete Asia B. Mama Hen and others familiar will know that Justin is middle ground with his feeling and sensation. Asia A being the worst case and C being the best.
Still no further developments with his hands but he is using his arms/wrists more without his wrist supports and finds way to accommodate what he needs without full function of his fingers.
He played three rounds of UNO Spin with TR Group and actually had some help with Preston (who of course showed his cards for the most part so others knew what was in his hand but they still managed to win one game and be runner up for another one--lol). I didn't have the camcorder so I have pics on my cell phone. Will have to figure a way to get them loaded to the blog site. He did manage to handle the cards for the most part by himself with his hands/fingers and figured out how to get some Life Saver gummies picked up and into his mouth himself.
He still seemed tired today. Robyn said he had been cold all morning when we got there and was still cold by sun down. Fever came in at 99.0 with BP at 110/64. We'll see how he's feeling in the morning.
We thought he was about to miss out once again on a Push Pass and was hopping mad. I talked with PT Beth who checked into it and was able to get him (and us) signed off. Robyn and I took him and Preston through the tunnel and to CVS where the boy spent a good plenty on a 'projection' clock---he said that way he could just look up at the ceiling and see what time it was everytime a nurse came in there wanting to poke, prod or roll him. The rest of the spending was on "junk" (candy, candy and more candy---he won't need candy for a while).
He said he was just happy to actually be allowed off the premises and feeling half normal.
We brought some home cooking and that seemed to really perk him up today. Nothing fancy, had some homemade tacos with the fixins for lunch and had chili dogs with cheese dip and chips for supper. He's doing cold cut subs Saturday for lunch and said after that, he's open to anything because he's happy and he know whatever it is will be good (ha).
PT Beth did advise me that they believe he has tendonitis in his right shoulder. They are going to do an injection straight into that tendon on Monday morning. It is suppose to go straight to the tendon and help it faster than pills. We ended up to a 'hot/cold' Bengay tonight. Of course, he said he could only feel it on the shoulder area of his arms, nothing through to his elbows. We continue to pray that he will eventually get his touch sensation back that goes with his actual mobility.
Dad not feeling good. He's been down since last week and this visit seems to be taking its toll on him. Of course, he continues to suck it up and do the best he can. Hopefully another doctor visit next week will find the cause enabling a find for a feel better cure.
We'll try to get some more pics and get them posted. He does PT at 8:00 in the morning so he's due to rise early.
Mama Hen--expected Grad day is September 19, he goes to Augusta for approximately 2-3 weeks (Shepherd is hoping for 2 weeks), then he comes back here for Out Patient which is roughly 4-6 weeks. Shepherd is hoping he will be so progressed in rehab that the latter will be for only 4 weeks but will keep him as long as needed (4-6 weeks). We anticipate somewhere around 1st week of November he returns back to Alabama and he's looking forward to 'walking' into SE AL Medical to tell all of you wonderful people "hello"!!!
Appreciate all of you for everything--prayers, understanding, encouragement and support. Love you all and hope everyone is doing okay!!!
Wednesday, August 26, 2009
Sorry for delay in posts
I haven't been able to speak with anyone yet and will try to update again tonight.
Hot off the presses: Dad just said---
Don't know if you got any of my messages but I got here at 10:30 and Justin was nauseous. He has a UTI since Sunday and the cultures came back yesterday so they started him on anti-biotics. They're making him nauseous and his BP had took a big dip earlier going down to something like 87/42. They got him on a bag and do the IC's @ 8 every 12 hours now. He didn't tell them early enough about the Braves game so he wasn't able to go. We went to the seating clinic and Justin picked out his chair based on his needs and the info they provided. It's a nice chair, but I asked them if they were ordering or configuring and they were going to order or inform the insurer. I asked them to hold up on that parts until I could talk to Barb to see the best way to go about the equipment as far as insurer verses VA. They thought that was a good idea to get the best equipment for Justin and who would cover and who would not. TriCare sees a lot of the chair equipment as frivulous and will not cover it unless it is medically necessary. Got that done and Justin was even more sick so we went back up to the room just as lunch was brought in. Justin said he couldn't eat and wanted some nausea meds as well as pain. They brought his meds but he couldn't eat yet so I talked him into trying some gingerale to sooth his stomach and after a few sips he said he wouldtry to eat something. About 4 forks of macaroni and 3 of the green beans was all he could stand. He said he thought he was full of shit literally but that it was probably in his head. KiKi said to call her when he was ready and they would see. He had to go to PT so I told him I would be back after I got checked in. Before I got out of the parking lot he text me nd said Jenn nd him in the rec room. So I went back up and we discussed the remodeling and the house. Took all of Justin's PT time but he was glad. Jenn said it looked like we were ahead of the game and had thought things thru. Justin had TR with Katie so once again I told him I would get checked in and be back
Will update you when I have more details or answers to what is going on!!!
Love you guys, the prayers work, even when they seem like 'down' days!!!!
Hot off the presses: Dad just said---
Don't know if you got any of my messages but I got here at 10:30 and Justin was nauseous. He has a UTI since Sunday and the cultures came back yesterday so they started him on anti-biotics. They're making him nauseous and his BP had took a big dip earlier going down to something like 87/42. They got him on a bag and do the IC's @ 8 every 12 hours now. He didn't tell them early enough about the Braves game so he wasn't able to go. We went to the seating clinic and Justin picked out his chair based on his needs and the info they provided. It's a nice chair, but I asked them if they were ordering or configuring and they were going to order or inform the insurer. I asked them to hold up on that parts until I could talk to Barb to see the best way to go about the equipment as far as insurer verses VA. They thought that was a good idea to get the best equipment for Justin and who would cover and who would not. TriCare sees a lot of the chair equipment as frivulous and will not cover it unless it is medically necessary. Got that done and Justin was even more sick so we went back up to the room just as lunch was brought in. Justin said he couldn't eat and wanted some nausea meds as well as pain. They brought his meds but he couldn't eat yet so I talked him into trying some gingerale to sooth his stomach and after a few sips he said he wouldtry to eat something. About 4 forks of macaroni and 3 of the green beans was all he could stand. He said he thought he was full of shit literally but that it was probably in his head. KiKi said to call her when he was ready and they would see. He had to go to PT so I told him I would be back after I got checked in. Before I got out of the parking lot he text me nd said Jenn nd him in the rec room. So I went back up and we discussed the remodeling and the house. Took all of Justin's PT time but he was glad. Jenn said it looked like we were ahead of the game and had thought things thru. Justin had TR with Katie so once again I told him I would get checked in and be back
Will update you when I have more details or answers to what is going on!!!
Love you guys, the prayers work, even when they seem like 'down' days!!!!
Sunday, August 23, 2009
Breaking News
For all of you avid fans of the nightly updates, I figured I would start out with the boring, hum-drum info and lead up to the night's finale---hope you don't mind.
Justin had a leisure visit with Robyn sharing some Java and Dunkin Stix--finally managed to get there early enough to pacify his cravings (lol). Once we managed to get packed and loaded (had a small mishap by letting Robyn leave the hotel with our keys-haha), we made it up there around 11:30--just in time to ditch the 'hospital lunch special' and make a run to the cafeteria for some food and a nice picnic in the Secret Garden.
Hotlanta temp was barely 80 degrees by lunch time which reached maybe 85 all day. Low humidity. Early 7am temp had dad thinking we were in fall already. Justin did catch a chill and wanted to make his way into some Atlanta sunshine so we managed to handle that until the rest of us decided we like 'air conditioning' way too much.
Justin had his facial and manicure yesterday and we finished off the visit with a pedicure and haircut. As the photos will show, he's feeling back to himself. He said just the haircut made him feel better. Amazing how the small things can change an attitude (of course, he reminded me that big things we take for granted can change an attitude also---hands and legs are on his order to Doc everytime they meet).
We managed to work out a plan for the coming week and he's going to have someone with him during his chair fitting time (he said he just wanted to make sure we all knew what to ask for when the time actually came to order---IF there remains a need in 6 weeks).
His BP maintained a 120/64 and he was pleased with that. He knows the importance of keeping a stable blood pressure that is as close to normal to anyone that has not experienced his trauma. Technically normal to us would be 120 over 80 with a few exceptions. So when he sees 120/64 he is inspired that 'normal' may be returning for him. No fever and the night was good for him.
And for those of you that were waiting on what is the grand finale---he texted us on our way home and advised us that he can feel his legs and 'butt cheeks' and can control his own pee!!!
Maybe too graphic for some that follow this but it is a huge step for Justin and we take any and all blessings, regardless of how small they may seem to others and how trivial it may seem.
He had already told us that he could feel the pressure on his heels laying in bed last night so he called the night nurses and told them he needed to be readjusted in bed (pulled up higher) so his heels wouldn't be pressed up and possibly cause bed sores. They wanted to know how he knew there was a problem and he politely informed them because he could feel the pressure. This is a very good sign. We've been warned so many times that paralysis means they can't feel enough to know they need to shift their weight like we would in a car riding too long or move a leg because it gets uncomfortable that way. Knowing that he can recognize his foot is pressing on something or has hit something is HUGE!!!
He also texted us and let us know that he can wiggle his thumbs a little bit.........gotta love his spirit and determination. He wants his hand function back bad and when that blessing happens I will record him playing his beloved guitar. He said he can play a lot and I've been ribbing him about how I haven't heard any of that good music---he claims he can do Phil Collins in the Air Tonight and so, so many more (too many right now to try to name, he know I love the Phil Collins and he claims Eagles too---my kind of rock and roll, he also claims some Lynerd Skynerd). Make a request list up and we'll post them by his bed as a motivation for who he will play for first.
We continue to know our blessings and continue to know that God provides them in the many forms called friends, family, co-workers, doctors, strangers---all instruments sent to answer our prayers. I thank God for each of you and I thank you call for caring enough to pray or encourage or search the blog or ask questions or give so much that we will never be able to repay.
My prayers have expanded beyond selfish---they include so much more and that in itself is a blessing!!!!
We love you guys...............may take another day or two for an update but we'll do our best to keep you all informed (leaving him was once again a hard one, I think the down time and alone time may be tougher on him than on us; yet with all of you--it will be okay).
Texas Janie---thank you so much--got the second card!!!
Amanda--missed the pics yesterday but saw them today, the nurses taped them above his bed-Thanks!!!! And it is the 'green' deoderant he is really liking, even his nurse Stanley (Stan the Man) commented today on how good it smells----you go with yourself!!!!
Love you, calling it a night!!
Justin had a leisure visit with Robyn sharing some Java and Dunkin Stix--finally managed to get there early enough to pacify his cravings (lol). Once we managed to get packed and loaded (had a small mishap by letting Robyn leave the hotel with our keys-haha), we made it up there around 11:30--just in time to ditch the 'hospital lunch special' and make a run to the cafeteria for some food and a nice picnic in the Secret Garden.
Hotlanta temp was barely 80 degrees by lunch time which reached maybe 85 all day. Low humidity. Early 7am temp had dad thinking we were in fall already. Justin did catch a chill and wanted to make his way into some Atlanta sunshine so we managed to handle that until the rest of us decided we like 'air conditioning' way too much.
Justin had his facial and manicure yesterday and we finished off the visit with a pedicure and haircut. As the photos will show, he's feeling back to himself. He said just the haircut made him feel better. Amazing how the small things can change an attitude (of course, he reminded me that big things we take for granted can change an attitude also---hands and legs are on his order to Doc everytime they meet).
We managed to work out a plan for the coming week and he's going to have someone with him during his chair fitting time (he said he just wanted to make sure we all knew what to ask for when the time actually came to order---IF there remains a need in 6 weeks).
His BP maintained a 120/64 and he was pleased with that. He knows the importance of keeping a stable blood pressure that is as close to normal to anyone that has not experienced his trauma. Technically normal to us would be 120 over 80 with a few exceptions. So when he sees 120/64 he is inspired that 'normal' may be returning for him. No fever and the night was good for him.
And for those of you that were waiting on what is the grand finale---he texted us on our way home and advised us that he can feel his legs and 'butt cheeks' and can control his own pee!!!
Maybe too graphic for some that follow this but it is a huge step for Justin and we take any and all blessings, regardless of how small they may seem to others and how trivial it may seem.
He had already told us that he could feel the pressure on his heels laying in bed last night so he called the night nurses and told them he needed to be readjusted in bed (pulled up higher) so his heels wouldn't be pressed up and possibly cause bed sores. They wanted to know how he knew there was a problem and he politely informed them because he could feel the pressure. This is a very good sign. We've been warned so many times that paralysis means they can't feel enough to know they need to shift their weight like we would in a car riding too long or move a leg because it gets uncomfortable that way. Knowing that he can recognize his foot is pressing on something or has hit something is HUGE!!!
He also texted us and let us know that he can wiggle his thumbs a little bit.........gotta love his spirit and determination. He wants his hand function back bad and when that blessing happens I will record him playing his beloved guitar. He said he can play a lot and I've been ribbing him about how I haven't heard any of that good music---he claims he can do Phil Collins in the Air Tonight and so, so many more (too many right now to try to name, he know I love the Phil Collins and he claims Eagles too---my kind of rock and roll, he also claims some Lynerd Skynerd). Make a request list up and we'll post them by his bed as a motivation for who he will play for first.
We continue to know our blessings and continue to know that God provides them in the many forms called friends, family, co-workers, doctors, strangers---all instruments sent to answer our prayers. I thank God for each of you and I thank you call for caring enough to pray or encourage or search the blog or ask questions or give so much that we will never be able to repay.
My prayers have expanded beyond selfish---they include so much more and that in itself is a blessing!!!!
We love you guys...............may take another day or two for an update but we'll do our best to keep you all informed (leaving him was once again a hard one, I think the down time and alone time may be tougher on him than on us; yet with all of you--it will be okay).
Texas Janie---thank you so much--got the second card!!!
Amanda--missed the pics yesterday but saw them today, the nurses taped them above his bed-Thanks!!!! And it is the 'green' deoderant he is really liking, even his nurse Stanley (Stan the Man) commented today on how good it smells----you go with yourself!!!!
Love you, calling it a night!!
Saturday, August 22, 2009
Saturday visit
When Justin found out that I was posting things like blood pressure and temp, he told me I was going overboard and giving way too much information, so I thought I would give the Hotlanta update--temp reached a total of 88 degrees with low humidity which actually made for a nice visit in the Secret Garden (as long as you weren't directly in the sun). Every now and again we got a cloud cover and eventually made our way to a table in the shade. I guess everyone heard the same news about how gorgeous today was expected to be.
But for those of you who think the BP and temp etc are beneficial to making you guys feel better when you know it, his BP was 110/57 with HR at 64 and temp at 98.6 By 6:30 he felt warmer so I made him pacify me with another temp check and it was 98.9--IC was low at 150 cc but they told him he needed to keep drinking plenty of fluids, at every 6 hours-his IC should be somewhat higher but nurses assured he was okay.
He's still somewhat miffed about not being able to leave the grounds but we did manage to call in for some TGIFs and everyone seemed to enjoy it (even if it was in the convenience of his room).
They have taken him off the pain meds and give him only Tylenol--he's not liking that too much but I pray soon he will be able to tolerate it. He does have some pain in his left arm which he said he feels like the muscles or tendons are tight. He still can't do as much with left arm as he can right arm. I advised he mention it to Doc on Monday and see what they think.
He and Preston had another good day of playing, you wouldn't think either recognizes the limitations the way Preston runs from him and Justin chases, or getting tickled or going for a ride in dad's chair. And Dad still has just the right tone to get his attention when he won't behave himself.
One fluke was Robyn's car trouble which dad spent 1/2 the weekend fixing. But it is now road safe and trusting enough (per dad) to make it back to the great state of Alabama. She missed her best friend's dad's wedding--regrets on that part because they are close but she's safe and sound, not stranded on the side of I85 somewhere, blessings keep on coming.
Justin said he thought once he got up here that things would drag on, but nope--time is flying by. He said it seemed like forever ago wanting his traech out now it seems like so long ago he can barely remember what a pain it was. He did mention that if he had the nurses from Dothan up here and some better pain meds--he'd be A OKAY!!! He's missing you all from Dothan....and we've put the "Cast and Crew" shirt up on his locker so everyone here in Hotlanta can see how many special people were watching over him back home.
We'll try to update again tomorrow. He wants Java and Dunkin sticks in the morning and we have a 12:00 check out time. Once we get packed up we'll head back up there for one last visit before having to come home. He wants us back Wednesday for a chair fitting meeting he has but dad got him a bit down when he told him he just didn't see a way to be able to do that. Of course, Justin reminded me later that we could sleep in the gym for free--all we have to do is be up and out of there by 6:00a.m. the next morning (ha ha) and they get to go to a Braves game that night (which was one more way for him to say "hey, if you come up for the sitting you can go to a Braves game"---he sure does know how to play on my heart, lol).
Any who, getting late here, laundry done, packing still to do--probably get up early and get all that done. Dad and Preston sleeping and Peetlebug trying to get there. Signing off for now.
Love you guys, pray for everyone everyday and believe in the blessings and miracles in whatever form they come in.
But for those of you who think the BP and temp etc are beneficial to making you guys feel better when you know it, his BP was 110/57 with HR at 64 and temp at 98.6 By 6:30 he felt warmer so I made him pacify me with another temp check and it was 98.9--IC was low at 150 cc but they told him he needed to keep drinking plenty of fluids, at every 6 hours-his IC should be somewhat higher but nurses assured he was okay.
He's still somewhat miffed about not being able to leave the grounds but we did manage to call in for some TGIFs and everyone seemed to enjoy it (even if it was in the convenience of his room).
They have taken him off the pain meds and give him only Tylenol--he's not liking that too much but I pray soon he will be able to tolerate it. He does have some pain in his left arm which he said he feels like the muscles or tendons are tight. He still can't do as much with left arm as he can right arm. I advised he mention it to Doc on Monday and see what they think.
He and Preston had another good day of playing, you wouldn't think either recognizes the limitations the way Preston runs from him and Justin chases, or getting tickled or going for a ride in dad's chair. And Dad still has just the right tone to get his attention when he won't behave himself.
One fluke was Robyn's car trouble which dad spent 1/2 the weekend fixing. But it is now road safe and trusting enough (per dad) to make it back to the great state of Alabama. She missed her best friend's dad's wedding--regrets on that part because they are close but she's safe and sound, not stranded on the side of I85 somewhere, blessings keep on coming.
Justin said he thought once he got up here that things would drag on, but nope--time is flying by. He said it seemed like forever ago wanting his traech out now it seems like so long ago he can barely remember what a pain it was. He did mention that if he had the nurses from Dothan up here and some better pain meds--he'd be A OKAY!!! He's missing you all from Dothan....and we've put the "Cast and Crew" shirt up on his locker so everyone here in Hotlanta can see how many special people were watching over him back home.
We'll try to update again tomorrow. He wants Java and Dunkin sticks in the morning and we have a 12:00 check out time. Once we get packed up we'll head back up there for one last visit before having to come home. He wants us back Wednesday for a chair fitting meeting he has but dad got him a bit down when he told him he just didn't see a way to be able to do that. Of course, Justin reminded me later that we could sleep in the gym for free--all we have to do is be up and out of there by 6:00a.m. the next morning (ha ha) and they get to go to a Braves game that night (which was one more way for him to say "hey, if you come up for the sitting you can go to a Braves game"---he sure does know how to play on my heart, lol).
Any who, getting late here, laundry done, packing still to do--probably get up early and get all that done. Dad and Preston sleeping and Peetlebug trying to get there. Signing off for now.
Love you guys, pray for everyone everyday and believe in the blessings and miracles in whatever form they come in.
Friday, August 21, 2009
Answers to our questions
For all of those with questions, here goes our best attempt:
Monday--he claims he wasn't lost. There's a hallway on his floor that gives the uneducated (like we first were) the impression that you can cross over from the Shepherd building to the Marcus building---but you can't. That pathway, walkway like area, leads to doors similar to those you would see at the CCU ward, locked with signs saying no admittance except by employees that pertain to what appears some top secret area.
Any whos, Justin found that walkway area and said that's his spot to go to get warm for one thing, the sun beats through the windows and it's more comfortable than the 65 degrees they keep everything else. Also gives him time to get away from everyone. I guess no one thought to check there since it's not a spot that most personnel frequent.
His call to his dad that day was a fluke, they were doing some new things in PT/OT and he ended up dialing his dad and didn't realize it so when dad called him back, he didn't answer and didn't check his phone for voicemail or texts.
Tuesday found him tired and trying out a manual chair so Wednesday really had him wore out. He does have his collar off and is doing really good with that. He got his feeding tube out yesterday and continues to say how 'weird' he is. He can feel things internally yet can't feel the sensation of that same thing externally. Even the staff are confused sometimes by how he explains what he feels--time and prayer will tell!!!
We got in around 2am Atlanta time, found our room and crashed out with intentions of getting back up 4 1/2 hours later. That turned into 5 1/2 hours later which resulted in a phone call from Justin by 9:15 wanting to know if we were almost ready. He decided to do an 'outing' which was a trip to Cumberland Mall. Robyn was first one ready by call time so she took the baby to meet up with them and ride out to the mall. Dad and I (after getting turned around and briefly lost) managed to make it out there around 11:30 just in time for lunch and a short shopping spree.
Dad took him for some shorts and shirts at American Eagle while Robyn and I took off with son in car-like roller to hunt a dress for Robyn. He seemed to enjoy the outing with respect that it was nice for him to be out with his son and not be so stir crazy staying at Shepherd all the time. Unfortunate side about it all was that he was under the impression that the outing finalized our 'day pass' training and he wanted to cross the street and treat everyone to some TGIF---didn't work out, PT nurse is off this week and she didn't sign off on our training so we couldn't leave the premises. This of course wasn't the best news and Justin got a bit perturbed. I'm hoping this will not set in some anger or depression. I told him it was just another week, she'll be back Monday, we'll be back Friday to finalize what she wants then we can get him out next weekend. Pray for a good week for him (or better yet, pray for the nurses--he's gonna be a tyrant)
AMANDA---thanks for the package, yes he did get it, he said thank you very much. He said that while he prefers spray deoderant he used what you sent and said it smells "GOOOOOD". He truthfully is liking whatever flavor it is that you found!!!
Susan---he got the card and wanted to say Thank you!! Of course, you know Justin--he had to approach it with the "Aw, wasn't that so sweet" Justin personality but it's taped to his locker door staring at him everyday.
Lydia---he showed Doc the "da**it doll"; he told him he if he didn't watch it he would use it on him (ha ha). He has a nurse here whose husband graduated from LSU and got a blanket there from when he was studying there. It is a nice blanket, this couple gave it to Justin. He wants us to pick out an extra special thank you card for them and he's without doubt daring someone to touch that thing. She went home telling her husband what an avid fan he was so they gave it to him, go figure the kindness of people.
We couldn't do TGIF so we did cafeteria food. He managed to eat all his tater tots by himself with his own fingers (all the tots, even the ones that thought they were too low in the take-out container for him to get to--lol). We cut up his turkey burger into wedges and while he thought it was a good idea, he managed to eat that too, with the help of his 'eating apparatus'.
Monday--he claims he wasn't lost. There's a hallway on his floor that gives the uneducated (like we first were) the impression that you can cross over from the Shepherd building to the Marcus building---but you can't. That pathway, walkway like area, leads to doors similar to those you would see at the CCU ward, locked with signs saying no admittance except by employees that pertain to what appears some top secret area.
Any whos, Justin found that walkway area and said that's his spot to go to get warm for one thing, the sun beats through the windows and it's more comfortable than the 65 degrees they keep everything else. Also gives him time to get away from everyone. I guess no one thought to check there since it's not a spot that most personnel frequent.
His call to his dad that day was a fluke, they were doing some new things in PT/OT and he ended up dialing his dad and didn't realize it so when dad called him back, he didn't answer and didn't check his phone for voicemail or texts.
Tuesday found him tired and trying out a manual chair so Wednesday really had him wore out. He does have his collar off and is doing really good with that. He got his feeding tube out yesterday and continues to say how 'weird' he is. He can feel things internally yet can't feel the sensation of that same thing externally. Even the staff are confused sometimes by how he explains what he feels--time and prayer will tell!!!
We got in around 2am Atlanta time, found our room and crashed out with intentions of getting back up 4 1/2 hours later. That turned into 5 1/2 hours later which resulted in a phone call from Justin by 9:15 wanting to know if we were almost ready. He decided to do an 'outing' which was a trip to Cumberland Mall. Robyn was first one ready by call time so she took the baby to meet up with them and ride out to the mall. Dad and I (after getting turned around and briefly lost) managed to make it out there around 11:30 just in time for lunch and a short shopping spree.
Dad took him for some shorts and shirts at American Eagle while Robyn and I took off with son in car-like roller to hunt a dress for Robyn. He seemed to enjoy the outing with respect that it was nice for him to be out with his son and not be so stir crazy staying at Shepherd all the time. Unfortunate side about it all was that he was under the impression that the outing finalized our 'day pass' training and he wanted to cross the street and treat everyone to some TGIF---didn't work out, PT nurse is off this week and she didn't sign off on our training so we couldn't leave the premises. This of course wasn't the best news and Justin got a bit perturbed. I'm hoping this will not set in some anger or depression. I told him it was just another week, she'll be back Monday, we'll be back Friday to finalize what she wants then we can get him out next weekend. Pray for a good week for him (or better yet, pray for the nurses--he's gonna be a tyrant)
AMANDA---thanks for the package, yes he did get it, he said thank you very much. He said that while he prefers spray deoderant he used what you sent and said it smells "GOOOOOD". He truthfully is liking whatever flavor it is that you found!!!
Susan---he got the card and wanted to say Thank you!! Of course, you know Justin--he had to approach it with the "Aw, wasn't that so sweet" Justin personality but it's taped to his locker door staring at him everyday.
Lydia---he showed Doc the "da**it doll"; he told him he if he didn't watch it he would use it on him (ha ha). He has a nurse here whose husband graduated from LSU and got a blanket there from when he was studying there. It is a nice blanket, this couple gave it to Justin. He wants us to pick out an extra special thank you card for them and he's without doubt daring someone to touch that thing. She went home telling her husband what an avid fan he was so they gave it to him, go figure the kindness of people.
We couldn't do TGIF so we did cafeteria food. He managed to eat all his tater tots by himself with his own fingers (all the tots, even the ones that thought they were too low in the take-out container for him to get to--lol). We cut up his turkey burger into wedges and while he thought it was a good idea, he managed to eat that too, with the help of his 'eating apparatus'.
Wednesday, August 19, 2009
Yippee--an actual update
All of you that, like us, have been holding your breath for this moment, you can now breathe easy: I spoke to my child!!
He said Monday was a rough day, he was "sick"--said it wasn't anything in particular, he has just been feeling 'blah' since Monday. He was tired Tuesday & today and said he spent most of his spare time sleeping. No rain there so we couldn't attribute it to that, he said he's just blah and his BP got low today which made it worse.
PT/OT are continuing to work him hard and he got a "manual chair" yesterday (the not-so-morbic version of what he said what it was kicking his a**, he literally said he thought he was going to die trying to move around in it). But, he's moving around in it and I take that as another blessing--manual chairs are hard especially when you don't have 100% use of your hands.
He didn't mean to worry anyone by not responding and reiterated he's just been tired and not feeling so hot. Hopefully our visit this weekend will rejuvenate his energy and motivation.
Also, there is a couple that works there--the wife is a tech on Justin's floor who told her husband (not sure where he works at) that Justin was a die-hard LSU fan. The husband attended and graduated from LSU. They gave Justin a LSU blanket that the husband got while attending school there. SO....he asked me to get him a 'special' thank you card for them!!
So many AWESOME people making this journey so much easier to bear!!!!!!!!
It would take a post of its own to name all of you that have prayed, encouraged, supported (in every conceivable way) and expressed genuine consideration----to all of you, THANK YOU SO VERY MUCH FROM ALL OF US!! WE are truly blessed.
Oh, he has his neck collar off also. We will try to get more pictures this weekend and get them posted for you all.
Love to you all, you are a huge part of the miracles we continue to see!!
Thanks to Erica and Quianna for assisting with tonight's phone call......
He said Monday was a rough day, he was "sick"--said it wasn't anything in particular, he has just been feeling 'blah' since Monday. He was tired Tuesday & today and said he spent most of his spare time sleeping. No rain there so we couldn't attribute it to that, he said he's just blah and his BP got low today which made it worse.
PT/OT are continuing to work him hard and he got a "manual chair" yesterday (the not-so-morbic version of what he said what it was kicking his a**, he literally said he thought he was going to die trying to move around in it). But, he's moving around in it and I take that as another blessing--manual chairs are hard especially when you don't have 100% use of your hands.
He didn't mean to worry anyone by not responding and reiterated he's just been tired and not feeling so hot. Hopefully our visit this weekend will rejuvenate his energy and motivation.
Also, there is a couple that works there--the wife is a tech on Justin's floor who told her husband (not sure where he works at) that Justin was a die-hard LSU fan. The husband attended and graduated from LSU. They gave Justin a LSU blanket that the husband got while attending school there. SO....he asked me to get him a 'special' thank you card for them!!
So many AWESOME people making this journey so much easier to bear!!!!!!!!
It would take a post of its own to name all of you that have prayed, encouraged, supported (in every conceivable way) and expressed genuine consideration----to all of you, THANK YOU SO VERY MUCH FROM ALL OF US!! WE are truly blessed.
Oh, he has his neck collar off also. We will try to get more pictures this weekend and get them posted for you all.
Love to you all, you are a huge part of the miracles we continue to see!!
Thanks to Erica and Quianna for assisting with tonight's phone call......
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