Sorry for the delay. They have loaded tons into this last week and lots of last minute things which throw off a day's schedule for laundry or phone calling.
As of tonight, we are leaving the great city of Atlanta around 4:00 EST Friday October 30th. And what I know right now, it took an mini-version of an act of congress to finally get confirmation his bed would be delivered and set up around 5:00 CST TODAY!!
He (we) have a full day tomorrow---meet with case manager in the morning at 9; OT and Fine Motor skills then lunch, PT and Graduation after lunch and one last manual transfer lesson before heading out.
What we found out today is that Justin went to Day Program already having some skills that Day Program usually trains and since his strength isn't 100% of what they like, they couldn't start the process of training "advanced" skills although they have touched on a few which PT/OT feels will be beneficial at home and for his return which will hopefully be first of the year. They've started E-stem on his abs today since they feel he may have some ab muscle function/use returning and have noted instructions on how to E-stem his scapulas. They've given him a tenodesis brace for his left hand because that one seems to be the weakest.
He has some more "odd" sensations coming back and we continue to hope this is a positive sign that things are beginning to wake up; and we continue to remember we are still early in his recovery, only 4 months into this!!
He rode a para-bike around the gym yesterday--was awesome!! Will help build his upper strength and will allow for him to actually ride bikes with Preston; of course, it has a good price tag but Justin said it's well worth it and hopes to acquire one in the near future for continued improvement while at home.
Home health has been approved so there shouldn't be too much down time especially when incorporated into what we've learned. We just need to get focused on a daily schedule (or home plan) and get it implemented.
A lot of other things still remain "up in the air" because they can't be put in place until he does his med-board through the military which could take another 6-12 months; but we'll take this one step at a time, one day at a time.
We continue to thank each of you for so much assistance, support, help, encouragement and overall keeping an eye on us. Also, Ms. Henri---the Governor's office turned our "unofficial" complaint over to another department. I'll get that information from Scotty's email for you. We haven't heard yet what they intend to do but Justin has said he still wants to file an official complaint against the Augusta VA. We'll keep you updated on that too!!!
Emmanuelle---we know you've had us in your thoughts!!! We hope that your husband is okay and pray for a speedy recovery and hope for blessings and support as we've seen in our 4 month journey.
Aunt T----we love you guys too and hope to see you all soon!! You will be overjoyed when you see Justin again.
For everyone---Thank you so very much!! Hope to see you all very, very soon!!!
Thursday, October 29, 2009
Monday, October 26, 2009
Birthday Monday
Well, the day started out with a spat---I guess I woke up on the wrong side of the bed and sleep deprived because my nerves were short. So much for starting the birthday off with good spirits.
9a.m. theraphy was learning to hook him to the FES Bike then he spent an hour cycling; he loves the bike, makes his leg feel good!! Then it was proning on the mat with terrible 3s; Robyn finished out that one as Preston and I came back to housing to get his cake (Robyn made a cake that looks like a pooltable and cupcakes as the cue balls----turned out amazing, will try to get pics posted soon). He received balloons from his team that was with him during inpatient and Doc Wayne's was super--Abby Cadabby. He said the balloon surprises were neat and his "ladies" had lunch with him---he does miss his Therapy ladies from Inpatient.
Afternoon was full of classes for him and was supposed to be full of chores for me but I kinda took an afternoon off and watched cartoons with Preston then dozed for about 45 minutes. Wasted time but I think it helped reduce some of my crankiness!!
AND---Justin may have some ab muscles coming back!! PT Amanda checked it out this morning and said they would do some more tests tomorrow or Wednesday but she seems impressed with what he was doing and what she felt.
We start PT and OT training in housing tomorrow, manual board transfers and "Lifeskills"--not sure what that means. Days getting closer to home time--scary but a new page!!!
Will try to update again; need to get refocused and organized!! Love you all and appreciate you all so very much!!
9a.m. theraphy was learning to hook him to the FES Bike then he spent an hour cycling; he loves the bike, makes his leg feel good!! Then it was proning on the mat with terrible 3s; Robyn finished out that one as Preston and I came back to housing to get his cake (Robyn made a cake that looks like a pooltable and cupcakes as the cue balls----turned out amazing, will try to get pics posted soon). He received balloons from his team that was with him during inpatient and Doc Wayne's was super--Abby Cadabby. He said the balloon surprises were neat and his "ladies" had lunch with him---he does miss his Therapy ladies from Inpatient.
Afternoon was full of classes for him and was supposed to be full of chores for me but I kinda took an afternoon off and watched cartoons with Preston then dozed for about 45 minutes. Wasted time but I think it helped reduce some of my crankiness!!
AND---Justin may have some ab muscles coming back!! PT Amanda checked it out this morning and said they would do some more tests tomorrow or Wednesday but she seems impressed with what he was doing and what she felt.
We start PT and OT training in housing tomorrow, manual board transfers and "Lifeskills"--not sure what that means. Days getting closer to home time--scary but a new page!!!
Will try to update again; need to get refocused and organized!! Love you all and appreciate you all so very much!!
Thursday, October 22, 2009
After further review
Okay Ms. Henri---I've about decided my brain isn't working well at all today. Maybe he'll be too tired to think twice about the blog and we'll be safe until Monday!!!!
Updating Thursday 10/22
Sorry for the delays (again)!!
Ms. Lue--probably could use a hug right now but would probably cry like a baby (PMSing or something). Got lots to do and seems like so little time.
Looks like tentative date to come home is first week of November. They feel Justin's wrist strength is not strong enough to accomplish some of the goals and said they couldn't spend 6 weeks working on wrists when they could reiterate what he needs for 'the now'. He can come back if he shows any improvements and will be placed on a list should availability be there when he does strengthen and progress.
Days here are busy, busy---especially now with them wanting to hands-on teach me everything. Will work manual transfers next week and he gets on the FES Bike Monday--it works the legs with electrodes (he loves it, was excited). Wanted to do the tilt table too but PT Amanda said she would rather focus on other things than stabilizing blood pressure and weining off the binder---so we'll see what happens. Day program keeps you busy, when you're not doing laundry every day (ha).
Justin continues to be a challenge for them because he doesn't not behave or respond in the "clinical" way---has sensations in areas he shouldn't, feels discomfort in areas that can't be explained, has no use of certain things and some use of others that don't make sense when you piece them together into the whole picture.
He's been hurting awful this week and taking more pain meds than he's done in the past month. He even said he feels plum uncomfortable and it's frustrating because he knows how he wants to move to try to get to feel better but the physical side won't cooperate. His spasms have been so bad at night that he kicks out the quad pads everytime I try to position them (which is not good, his feet are supposed to stay off the bed for pressure points and he's kicking them out every hour), some rough-rough nites as of late. He took his first sleeping pill last night in hopes it would relax his body and help him rest better-----it didn't!!
He's doing more manual transfers this week and is trying to get through today without his Tet Hoses (are for blood pressure and circulation) and can sit in his chair from after lunch until bed time without his binder now. Although, we found out yesterday that his binder helps in more ways than we realized so he said he wasn't going to rush getting rid of that totally just yet!
We had company Monday until early this morning--cousin and friend from Cajun Country. I swear I still see phantom movement--yesterday Brandi was helping with the sling so we could lift him off the mat and it was her first time and the sling was under his right leg and it looked as though he lifted his knee and thigh so she could get it out from under him---he thought nothing of it and kept on doing what he was doing but we looked at each other like "did he just do that" I can move his leg in the chair to do something and it's almost like he moves it back into the spot it just came from. He says (and his therapists too) it's just spasms but how can a spasm be so specific to put a foot or leg back in a specific spot???!!
He's got an E-Stem machine which sends electrical impulses through the body and he's been using that this week on his right arm trying to stimulate wrist action and hopefully strengthening; right wrist is the weakest even though it has more functionality (I told you he was weird).
We are not ready at all for the homecoming---so much to do and so much paperwork; looks like he'll be living out of the living room for a bit and I think he's somewhat nervous about going home but this too shall be overcome and I know the New Year will see us onto a new journey and he'll be settled in and working towards improving in no time.
I want to thank everyone who donated and participated in the yard sale. It was truly appreciated and helped out so very much!!! Also for those who sent words of encouragement and some extra "support", we pray your kindness is blessed 10 Fold.
I was asked today how much community support did we feel we had and I immediately advised the gentleman that we would not have made it this far without the support of my co-workers and friends!!! We thank you all so much, our family is stronger and blessed because of you all...
Now I'm PMSing just thinking about you all (lol)---I know there's so so much I'm forgetting and for all that have followed it's not fair for me to be so scatter-brained so I will try to start getting notes taken again so that when I get a chance to sit in front of the laptop for updates, I'll have it all there to refresh my memory and write it down.
Oh, he took his flu and pneumonia shots yesterday; had me worried last night that he was going to be sick from them but he did good through the night and appears to be better this morning. Just complaining about his neck "hurting like H**L"............
His birthday is Monday and we think we've managed to coordinate a surprise for him up here that he won't be expecting (he was all prepared to have it be just another day). Any birthday wishes you may have, please post them---he's at housing now and can read them on the laptop!!
Well, duty calls in 20 minutes----gotta meet him to set him up for lunch then it's back to the gym for more learning!!
Love you all, will keep you updated (will try harder) and thank you all so very much!!!!!!!!!!
Ms. Lue--probably could use a hug right now but would probably cry like a baby (PMSing or something). Got lots to do and seems like so little time.
Looks like tentative date to come home is first week of November. They feel Justin's wrist strength is not strong enough to accomplish some of the goals and said they couldn't spend 6 weeks working on wrists when they could reiterate what he needs for 'the now'. He can come back if he shows any improvements and will be placed on a list should availability be there when he does strengthen and progress.
Days here are busy, busy---especially now with them wanting to hands-on teach me everything. Will work manual transfers next week and he gets on the FES Bike Monday--it works the legs with electrodes (he loves it, was excited). Wanted to do the tilt table too but PT Amanda said she would rather focus on other things than stabilizing blood pressure and weining off the binder---so we'll see what happens. Day program keeps you busy, when you're not doing laundry every day (ha).
Justin continues to be a challenge for them because he doesn't not behave or respond in the "clinical" way---has sensations in areas he shouldn't, feels discomfort in areas that can't be explained, has no use of certain things and some use of others that don't make sense when you piece them together into the whole picture.
He's been hurting awful this week and taking more pain meds than he's done in the past month. He even said he feels plum uncomfortable and it's frustrating because he knows how he wants to move to try to get to feel better but the physical side won't cooperate. His spasms have been so bad at night that he kicks out the quad pads everytime I try to position them (which is not good, his feet are supposed to stay off the bed for pressure points and he's kicking them out every hour), some rough-rough nites as of late. He took his first sleeping pill last night in hopes it would relax his body and help him rest better-----it didn't!!
He's doing more manual transfers this week and is trying to get through today without his Tet Hoses (are for blood pressure and circulation) and can sit in his chair from after lunch until bed time without his binder now. Although, we found out yesterday that his binder helps in more ways than we realized so he said he wasn't going to rush getting rid of that totally just yet!
We had company Monday until early this morning--cousin and friend from Cajun Country. I swear I still see phantom movement--yesterday Brandi was helping with the sling so we could lift him off the mat and it was her first time and the sling was under his right leg and it looked as though he lifted his knee and thigh so she could get it out from under him---he thought nothing of it and kept on doing what he was doing but we looked at each other like "did he just do that" I can move his leg in the chair to do something and it's almost like he moves it back into the spot it just came from. He says (and his therapists too) it's just spasms but how can a spasm be so specific to put a foot or leg back in a specific spot???!!
He's got an E-Stem machine which sends electrical impulses through the body and he's been using that this week on his right arm trying to stimulate wrist action and hopefully strengthening; right wrist is the weakest even though it has more functionality (I told you he was weird).
We are not ready at all for the homecoming---so much to do and so much paperwork; looks like he'll be living out of the living room for a bit and I think he's somewhat nervous about going home but this too shall be overcome and I know the New Year will see us onto a new journey and he'll be settled in and working towards improving in no time.
I want to thank everyone who donated and participated in the yard sale. It was truly appreciated and helped out so very much!!! Also for those who sent words of encouragement and some extra "support", we pray your kindness is blessed 10 Fold.
I was asked today how much community support did we feel we had and I immediately advised the gentleman that we would not have made it this far without the support of my co-workers and friends!!! We thank you all so much, our family is stronger and blessed because of you all...
Now I'm PMSing just thinking about you all (lol)---I know there's so so much I'm forgetting and for all that have followed it's not fair for me to be so scatter-brained so I will try to start getting notes taken again so that when I get a chance to sit in front of the laptop for updates, I'll have it all there to refresh my memory and write it down.
Oh, he took his flu and pneumonia shots yesterday; had me worried last night that he was going to be sick from them but he did good through the night and appears to be better this morning. Just complaining about his neck "hurting like H**L"............
His birthday is Monday and we think we've managed to coordinate a surprise for him up here that he won't be expecting (he was all prepared to have it be just another day). Any birthday wishes you may have, please post them---he's at housing now and can read them on the laptop!!
Well, duty calls in 20 minutes----gotta meet him to set him up for lunch then it's back to the gym for more learning!!
Love you all, will keep you updated (will try harder) and thank you all so very much!!!!!!!!!!
Monday, October 19, 2009
Day 4, 5, 6 and 7
Day 4 found Preston turning 4 years old and Robyn was going to surprise Justin with an early visit but she let the 'cat out of the bag' during a text that she was coming up that evening so he knew ahead of time she was coming (lol).
Did typical day in the gym and spent half the day trying to find a ride to Target---for this to be Atlanta it sure sucks when trying to get transportation, everyone wants a 24 hour notice and you get an answering machine or you wait 15 minutes on hold. Finally lucked up and found out that inpatient was doing an "outing" to of all places Target and because they all love Justin so much, they let him hitch a ride (mama of course had to drive Atlanta traffic-ha). Robyn and Preston made their way in about the time we were getting ready to check out and we headed back to housing for a late but fun birthday for Preston. Robyn has pics so I'll try to get some from her camera loaded and post them.
Long day turned into late nite so day 5 Friday was started on about 6 hours sleep (and it's not straight through sleep---feels like having a new born all over again, the waking up 3 times a night----but I'm not complaining).
Robyn and Preston spent some time with Justin that morning in the gym while I did some hurry up laundry. After that, I kept Preston busy while Robyn was allowed to stay in the gym and have some hands on with this therapy and learn some stuff. She said the workouts are brutal yet awesome, "they really work him"!! His OT Jamie and Justin both got her hooked on RummiKub also and Justin is so hooked he bought one Thursday---get ready all you folks back home, you ever come visit Justin here or at home---I'm sure it will be game on with Rummikub--it just wears him out sometimes using his hands and leaning over to see what's been played but he loves playing it and it's another form of therapy!
Day 6 and 7 were our first official weekend days at housing. Dad couldn't make the trip due to trying to get transportation going and working on paper work side of things.
It was COLD here so we didn't spend much time out Saturday. Sunshine prevailed on Sunday so we spent about an hour in the Garden so Preston could play with some of his birthday toys!!
Health wise Justin is doing good--I'm worried a bit this morning with him being so cold--left here with a long sleeve, a hoodie and beanie, a blanket and long pants and was still cold---all bundled up like he was expecting snow. He still hasn't had his flu & pneumonia shot yet; they are supposed to be getting those done for him---I pray it doesn't make him sick.
So far things are good--no bed sores while on my watch (knock on wood) but he has gotten a bit constipated---only one night without getting results but it's taking around an hour each night and not getting what he expects---he's tried over the counter help but nothing. He said last night that if the Milk of Mag didn't help maybe he would feel better---I said "whew" thank you---one of those 'can't get blood from turnips things'---but I understand his concerns, wouldn't want it getting backed up on him and causing intestional problems.
We had planned on a movie Saturday nite---me & Preston were to do Cloudy with Meatballs while Justin & Robyn did Law Abiding Citizen---I called Friday with our 24 hour reservation, made sure we mapped out how far the theater was and packed for any emergency then Saturday at 7:00 we went downstairs to wait for a 7:15 pickup (handicap accessible)--7:15 no show, 7:25 no show, I called and waited 5 minutes to finally get a "hold on" then waited again on hold--by this time Justin was disappointed and went back upstairs, after a third time of him wanting to put me on hold I said BS and hung up, getting around up here SUCKS!!!
He seemed better Sunday but I did lay back down after the early morning rise and put us a bit late getting started Sunday---of course, everyone slept in so I didn't feel too awful bad. Got Robyn and Preston on their way home last night and tucked ourselves in for another new week.
As for Justin: it's hard to know what's going on, he said the other night he was laying in bed and could feel that he was uncomfortable wanting to resposition himself and he said he couldn't tell if it was his imagination or not but it felt like his foot/ankle were moving; then there are the days when he says he can feel like his legs and feet are "sore" from being in one spot too long and you need to stretch them out. He said he sits there and tries so hard to move them--he said it's a weird feeling having your body feel that it needs to move but not being able to move it, makes us curious if he's supposed to be feeling these things!!
He's also wondering why he gets COLD during the day but HOT during the night! He wants the air kept down on 68 at night and said it feels like his legs are on fire!! Blood pressure has been doing good, been somewhat low a few days but we're keeping an eye on things---low to us is normal to a paralyzed--yesterday was 108/56 but he's been doing good with his around 120/70
I'm sure I'm forgetting tons of things---it's been very busy and so much going on and moving so fast and I barely have time to think about posting. Hopefully week two will find us with a better routine so that I can update daily. Still so much to do and praying it all comes together soon; he's definitely paranoid we won't have the house done in time for his departure---busy, busy!!!
We wanted to thank you all so very much for the yard sale and the money; it will definitely help us out more than you know!!! We continue to Thank God for all of you and your generosity, guidance, support and prayers!! May you all be as blessed as we are...............
Love you all and will try to get better focused and organized for the updates!!
Did typical day in the gym and spent half the day trying to find a ride to Target---for this to be Atlanta it sure sucks when trying to get transportation, everyone wants a 24 hour notice and you get an answering machine or you wait 15 minutes on hold. Finally lucked up and found out that inpatient was doing an "outing" to of all places Target and because they all love Justin so much, they let him hitch a ride (mama of course had to drive Atlanta traffic-ha). Robyn and Preston made their way in about the time we were getting ready to check out and we headed back to housing for a late but fun birthday for Preston. Robyn has pics so I'll try to get some from her camera loaded and post them.
Long day turned into late nite so day 5 Friday was started on about 6 hours sleep (and it's not straight through sleep---feels like having a new born all over again, the waking up 3 times a night----but I'm not complaining).
Robyn and Preston spent some time with Justin that morning in the gym while I did some hurry up laundry. After that, I kept Preston busy while Robyn was allowed to stay in the gym and have some hands on with this therapy and learn some stuff. She said the workouts are brutal yet awesome, "they really work him"!! His OT Jamie and Justin both got her hooked on RummiKub also and Justin is so hooked he bought one Thursday---get ready all you folks back home, you ever come visit Justin here or at home---I'm sure it will be game on with Rummikub--it just wears him out sometimes using his hands and leaning over to see what's been played but he loves playing it and it's another form of therapy!
Day 6 and 7 were our first official weekend days at housing. Dad couldn't make the trip due to trying to get transportation going and working on paper work side of things.
It was COLD here so we didn't spend much time out Saturday. Sunshine prevailed on Sunday so we spent about an hour in the Garden so Preston could play with some of his birthday toys!!
Health wise Justin is doing good--I'm worried a bit this morning with him being so cold--left here with a long sleeve, a hoodie and beanie, a blanket and long pants and was still cold---all bundled up like he was expecting snow. He still hasn't had his flu & pneumonia shot yet; they are supposed to be getting those done for him---I pray it doesn't make him sick.
So far things are good--no bed sores while on my watch (knock on wood) but he has gotten a bit constipated---only one night without getting results but it's taking around an hour each night and not getting what he expects---he's tried over the counter help but nothing. He said last night that if the Milk of Mag didn't help maybe he would feel better---I said "whew" thank you---one of those 'can't get blood from turnips things'---but I understand his concerns, wouldn't want it getting backed up on him and causing intestional problems.
We had planned on a movie Saturday nite---me & Preston were to do Cloudy with Meatballs while Justin & Robyn did Law Abiding Citizen---I called Friday with our 24 hour reservation, made sure we mapped out how far the theater was and packed for any emergency then Saturday at 7:00 we went downstairs to wait for a 7:15 pickup (handicap accessible)--7:15 no show, 7:25 no show, I called and waited 5 minutes to finally get a "hold on" then waited again on hold--by this time Justin was disappointed and went back upstairs, after a third time of him wanting to put me on hold I said BS and hung up, getting around up here SUCKS!!!
He seemed better Sunday but I did lay back down after the early morning rise and put us a bit late getting started Sunday---of course, everyone slept in so I didn't feel too awful bad. Got Robyn and Preston on their way home last night and tucked ourselves in for another new week.
As for Justin: it's hard to know what's going on, he said the other night he was laying in bed and could feel that he was uncomfortable wanting to resposition himself and he said he couldn't tell if it was his imagination or not but it felt like his foot/ankle were moving; then there are the days when he says he can feel like his legs and feet are "sore" from being in one spot too long and you need to stretch them out. He said he sits there and tries so hard to move them--he said it's a weird feeling having your body feel that it needs to move but not being able to move it, makes us curious if he's supposed to be feeling these things!!
He's also wondering why he gets COLD during the day but HOT during the night! He wants the air kept down on 68 at night and said it feels like his legs are on fire!! Blood pressure has been doing good, been somewhat low a few days but we're keeping an eye on things---low to us is normal to a paralyzed--yesterday was 108/56 but he's been doing good with his around 120/70
I'm sure I'm forgetting tons of things---it's been very busy and so much going on and moving so fast and I barely have time to think about posting. Hopefully week two will find us with a better routine so that I can update daily. Still so much to do and praying it all comes together soon; he's definitely paranoid we won't have the house done in time for his departure---busy, busy!!!
We wanted to thank you all so very much for the yard sale and the money; it will definitely help us out more than you know!!! We continue to Thank God for all of you and your generosity, guidance, support and prayers!! May you all be as blessed as we are...............
Love you all and will try to get better focused and organized for the updates!!
Updates
Will try to update you guys soon. Need to get Justin to gym to find out what this week's schedule is like. Not sure I like not knowing until Monday morning what we are expected to do but we'll deal with it.
Was busy weekend with Justin being here for first time on the weekend; also was Preston's 4th birthday Thursday-busy weekend.
Love you guys and hopefully I can come back and get some laundry done (on the 2nd floor--praying that these washers are available and don't have to go to 3rd floor LOL).
Happy Monday!!
Was busy weekend with Justin being here for first time on the weekend; also was Preston's 4th birthday Thursday-busy weekend.
Love you guys and hopefully I can come back and get some laundry done (on the 2nd floor--praying that these washers are available and don't have to go to 3rd floor LOL).
Happy Monday!!
Wednesday, October 14, 2009
Day 3
I just offered to update the blog tonight from Justin's own words but he's eating Watermelon Twizzlers and watching NCIS so he politely said Nah!!!
Well, Justin finally made it to bed around 1am this morning---nothing wrong, he just found himself intrigued with the stories on the history channel and kept on going until he finally realized that mama can't go to sleep until he does. Shower done and bowel program and it was off to bed.
4a.m. rolled around quick for his turning (and no accidental leaking with his bed bag, yippee) then it was alarm time to get up for a new day. Things went smoother this morning and we even had 20 minutes to spare before his 9am start time.
Met with the nurse for the outpatient program which was basic Q&A with some suggestions; she's scheduling Justin to meet with Dr. Lin (new doc who watches over the day program patients). It was PT time with Marta (I think she's Russian--don't always understand her) but we "proned" Justin--which is basically laying him on the mat on his stomach--she showed him some exercises to do laying that way and basically said "see you later", got mine and Justin's attention so we were all "see you later??", she asked if I could roll him back over and get him back in the chair, which I can, so she left us to do his arm exercises and get him on his way to the next person.
He had Wonderful Wayne next--psychiatrist--who actually thinks we're okay people, even with our quirks and Justin's sarcastic sense of humor, go figure--we may actually be normal (LOL).
It was TR time next which was full of the game RummiKub---fun game but was designed to work fine motor skills--the three players there all have difficulties using their hands so it was interesting to see them all trying so hard while still enjoying the game. There was some frustration with Justin not being able to grasp (they are like dominoes) but he relaxed with it and seemed to come around (his friend Sam was in there and they are a hoot when together).
OT worked with him next and tried some new things for him to try. She was wanting to try to show him how to empty his own leg bag and he said while they were in the "potty" leaning trying to reach it he felt a 'horrible' pain in his bladder area, he said it hurt bad enough to freak him out and insisted she set him up straight. Apparently it scared because he said he had to apologize to her for freaking out but he had never felt that pain before and wasn't aware he could feel that kind of pain in that area. He goes back in the morning to discuss his meds with the nurse so we're going to ask her opinion.
He seemd to get better so OT worked with him on some new things that work his arms, upper trunk area---he said she's brutal and tried to kill him (ha ha) but he's sticking with it all and working hard. She loosened his binder and he's been doing well with his blood pressure so far. I checked it at 9:30 and it was 118/63 with P 92--that's pretty good to make it 6 hours without the binder---this is a big thing, means he is working towards a stronger diaphragm and lung function and everyone's dream to be able to function without something helping them to breathe.
Nothing new to report as for progress or improvements. The last two days have basically been re-evaluating what we already new fromt he inpatient side of things.
Hope tomorrow brings more of a routine and strengthening and such----also brings that boy of his officially turning 4 years old, where did the time go??!!!!
Love you all, appreciate you all and continue to pray---thanking God for all of you!!!!
Well, Justin finally made it to bed around 1am this morning---nothing wrong, he just found himself intrigued with the stories on the history channel and kept on going until he finally realized that mama can't go to sleep until he does. Shower done and bowel program and it was off to bed.
4a.m. rolled around quick for his turning (and no accidental leaking with his bed bag, yippee) then it was alarm time to get up for a new day. Things went smoother this morning and we even had 20 minutes to spare before his 9am start time.
Met with the nurse for the outpatient program which was basic Q&A with some suggestions; she's scheduling Justin to meet with Dr. Lin (new doc who watches over the day program patients). It was PT time with Marta (I think she's Russian--don't always understand her) but we "proned" Justin--which is basically laying him on the mat on his stomach--she showed him some exercises to do laying that way and basically said "see you later", got mine and Justin's attention so we were all "see you later??", she asked if I could roll him back over and get him back in the chair, which I can, so she left us to do his arm exercises and get him on his way to the next person.
He had Wonderful Wayne next--psychiatrist--who actually thinks we're okay people, even with our quirks and Justin's sarcastic sense of humor, go figure--we may actually be normal (LOL).
It was TR time next which was full of the game RummiKub---fun game but was designed to work fine motor skills--the three players there all have difficulties using their hands so it was interesting to see them all trying so hard while still enjoying the game. There was some frustration with Justin not being able to grasp (they are like dominoes) but he relaxed with it and seemed to come around (his friend Sam was in there and they are a hoot when together).
OT worked with him next and tried some new things for him to try. She was wanting to try to show him how to empty his own leg bag and he said while they were in the "potty" leaning trying to reach it he felt a 'horrible' pain in his bladder area, he said it hurt bad enough to freak him out and insisted she set him up straight. Apparently it scared because he said he had to apologize to her for freaking out but he had never felt that pain before and wasn't aware he could feel that kind of pain in that area. He goes back in the morning to discuss his meds with the nurse so we're going to ask her opinion.
He seemd to get better so OT worked with him on some new things that work his arms, upper trunk area---he said she's brutal and tried to kill him (ha ha) but he's sticking with it all and working hard. She loosened his binder and he's been doing well with his blood pressure so far. I checked it at 9:30 and it was 118/63 with P 92--that's pretty good to make it 6 hours without the binder---this is a big thing, means he is working towards a stronger diaphragm and lung function and everyone's dream to be able to function without something helping them to breathe.
Nothing new to report as for progress or improvements. The last two days have basically been re-evaluating what we already new fromt he inpatient side of things.
Hope tomorrow brings more of a routine and strengthening and such----also brings that boy of his officially turning 4 years old, where did the time go??!!!!
Love you all, appreciate you all and continue to pray---thanking God for all of you!!!!
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