I won't apologize this time for the delay; I will simply say Thank you for the many that have followed this blog from day one. To all that have commented, supported, prayed and encouraged. And for any that still want to follow or stay in touch, I will post yet again what the last 6 weeks have seen.
This delay was selfish, stressful, contagious catching yet calming and somewhat eye opening.
There were a few days that Preston and I were sick with this crupey crud stuff, then Dad caught it and Robyn still struggles to get over it, then came the stomach bug that got Dad and Robyn both and now Dad has been diagnosed with an ulcer. Robyn still struggles to catch up on rest and get over these bugs that are carrying some heavy weight kicks to them.
I thank God every day that Justin has only had a few brief hiccups from all of these ailments. I couldn't imagine being in his position and having to fight off these viruses going around.
For those that haven't seen Justin in person, you really should. So many can't believe the progress he has made. It's not so much that he has regained hands or fingers or toes or feet, he has adapted and improves with attitude and motivation. Most that see him overlook that he still has not regained his hands or fingers. It takes them a second conversation to realize that he uses other means to handle things.
PT Andrew continues to be impressed with his drive and ability; although, there has been one down side lately. He has started online classes which has caused some serious tenonitis (spelling??) in his right arm and shoulder. We've had to do some nights of the "rice bag" and even a night of ice pack. I've noticed him using a bit more tylenol and arm stretches but that too shall be something we'll have to figure out. Of course, as mama, I said we'll just have to find someone (cheap) who can come out and type as he dictates (LOL).
Most of you know by now that we didn't make it to Shepherd but were blessed to have home health continue for anther 60 days. The FES bike is still in limbo---we were SO hoping to have that worked out before now. Justin loves being on the bike and it will give him a LOT more than my mama stretches in the morning before work and at night come bed time. There's been some muscle mass loss in the lower extremities but not so much that we're too concerned yet. Noticeable but not horrible. We've got an approval with a new company, it's just getting the "red tape" taken care of and getting that sucker out here.
For the Mama Hen's out there that read between the comments, things have been stressful, moments have caused question not so much to Justin but to family and future. We are putting full efforts into finding counseling and assistance to show a way to make day to day work for everyone concerned.
We've gone back to where our journey began---hoping Shepherd will guide us in our journey to find our way and fulfill our destiny and help us become a family again.
AND PRAYING...........
I see my child and see hope. I get tired yet see hope. I get inspiration and know there is hope. I have learned many lessons and know that Justin will prevail and still continue to know that walking is a miracle that God can provide. Nine months into this, he continues to have unexplained experiences, changes and sensations.
Justin only recently said he wished that there was a clear answer to what he was supposed to be doing. Others can tell him their experiences, yet it's theirs. I tell him to keep an open mind, it will come!!
Happy Easter to you all. It is with God we shall Live!!!
And as Preston said---may the Rabbit come see you all.
Love you all, pray for many, we're still hanging in there and appreciate the many that have hung in there for us.
As always, I know there is more to be said, read or explained. I'll do my best!!
Thursday, April 1, 2010
Tuesday, February 23, 2010
Short and sweet
I apologize for no delays as of late. While you all have been in our thoughts and prayers, it has been a busy, strained last month.
Short version:
LOD decision is NO. Even with appeal, we've been advised it may not get reversed.
Shepherd trip for March 15th is postponed because my leave request at work was denied and Justin will not go back to Shepherd unless I am there since I've become primary caregiver, even though I work full time.
Home front--tensions are high, stress is high, taking it day-to-day and praying a lot.
Improvements--Justin continues to gain in upper strength and adaptation, yet somehow we acknowledge that progress isn't as rapid as it was early on through this journey. We continue to be thankful for what improvements he has and pray for continued recovery and healing.
Since there will be no Shepherd, home health will continue with PT Andrew, I will continue with lower extremities and find a way to incorperate the e-stem into his routine and hopefully the FES bike that we still haven't received will come in and I'll work out some kind of schedule to get him on that too.
He's doing some research into a touch screen computer and hopes to find a grant that will help him start taking some online courses. Small things I haven't yet quite figured out who to contact or how to get accomplished, especially working all day and chores at night.
But---we will figure it all out.
For the many that continue to show concern, prayer, patience and love----we thank you all!!
Hopefully we will update again with more time to give to the update and more progress to report.
Judy
Short version:
LOD decision is NO. Even with appeal, we've been advised it may not get reversed.
Shepherd trip for March 15th is postponed because my leave request at work was denied and Justin will not go back to Shepherd unless I am there since I've become primary caregiver, even though I work full time.
Home front--tensions are high, stress is high, taking it day-to-day and praying a lot.
Improvements--Justin continues to gain in upper strength and adaptation, yet somehow we acknowledge that progress isn't as rapid as it was early on through this journey. We continue to be thankful for what improvements he has and pray for continued recovery and healing.
Since there will be no Shepherd, home health will continue with PT Andrew, I will continue with lower extremities and find a way to incorperate the e-stem into his routine and hopefully the FES bike that we still haven't received will come in and I'll work out some kind of schedule to get him on that too.
He's doing some research into a touch screen computer and hopes to find a grant that will help him start taking some online courses. Small things I haven't yet quite figured out who to contact or how to get accomplished, especially working all day and chores at night.
But---we will figure it all out.
For the many that continue to show concern, prayer, patience and love----we thank you all!!
Hopefully we will update again with more time to give to the update and more progress to report.
Judy
Tuesday, January 26, 2010
Playing catch-up
I certainly didn't realize two weeks had passed. Sure does make you wonder where the time goes, and almost done with the first month of the New Year.....whew!!!
Still no completion on home mods yet---seems like we take 3 strides back for every one good step. If the breakers for that dinosaur box of ours will come in Thursday as we hope, we may actually get Justin moved into his room this weekend. I'm sure he will definitely enjoy being in his own room for a change instead of hanging out in our living room (ha).
Other miscellaneous issues with the rest of the construction but that's a day for when I can vent and not worry about whether they will come back and do it right or leave us hanging (yet again). I keep telling myself "one day" it will all be finished and done right (and pray alot).
As for Justin, his UTI has cleared up which has eased the amount of headaches and rounds with high blood pressure. He has seemed sluggish as of late but insists he is fine. He HATES when we ask "are you okay" and says he will let us know when something is wrong. I think he is tired of us 'smothering' over him so much and I can't get him to understand that it's just what parents do. He says we are paranoid and I'm sure we over-do sometimes; we just don't have all the right answers and as with anything, can screw things up occassionally (lol).
He has gotten more sensations back. You can run your fingers down under his left foot now and his toes react. His right foot has been doing this since Dothan but his left foot just started it recently. He also indicated a few nights ago that he has sensation further down his back. We continue to take these as encouraging signs that things are waking up. Of course, it's slow go so it can be frustrating to him sometimes to get small steps with no mobility or functionality with it. I just keep talking to God and take it a day at a time. I wanted it yesterday, apparently God hasn't decided yet on "His time".
His E-stem machine made it in finally and PT Andrew used it on his wrists and shoulders (I hadn't seen it used on the shoulders before). Dad and Justin both said it was different. Of course, Justin loves the e-stem. We're still waiting on the FES Bike; that is the one that Justin REALLY loves, it works his legs by electrode. He'll be on that thing everyday if you will let him.
He thought he felt a sensation in his right knee, but with a lot of things, it was fleeting and hasn't come back since. He checks it periodically and I keep thinking if it happened once, it can happen again. I just know he wishes some of these things would come back permanently.
I'm sorry for the delays in updating. I know so many of you have kept up with his progresses and/or stall days and have continued to encourage and pray. We appreciate you all for everything. Hopefully soon we can have some structure and a better routine so that we can update as they happen instead of Mama hurrying and worrying about forgetting to include something.
I hope this finds all of you staying warm & dry and in good health. We love you all!!!
Still no completion on home mods yet---seems like we take 3 strides back for every one good step. If the breakers for that dinosaur box of ours will come in Thursday as we hope, we may actually get Justin moved into his room this weekend. I'm sure he will definitely enjoy being in his own room for a change instead of hanging out in our living room (ha).
Other miscellaneous issues with the rest of the construction but that's a day for when I can vent and not worry about whether they will come back and do it right or leave us hanging (yet again). I keep telling myself "one day" it will all be finished and done right (and pray alot).
As for Justin, his UTI has cleared up which has eased the amount of headaches and rounds with high blood pressure. He has seemed sluggish as of late but insists he is fine. He HATES when we ask "are you okay" and says he will let us know when something is wrong. I think he is tired of us 'smothering' over him so much and I can't get him to understand that it's just what parents do. He says we are paranoid and I'm sure we over-do sometimes; we just don't have all the right answers and as with anything, can screw things up occassionally (lol).
He has gotten more sensations back. You can run your fingers down under his left foot now and his toes react. His right foot has been doing this since Dothan but his left foot just started it recently. He also indicated a few nights ago that he has sensation further down his back. We continue to take these as encouraging signs that things are waking up. Of course, it's slow go so it can be frustrating to him sometimes to get small steps with no mobility or functionality with it. I just keep talking to God and take it a day at a time. I wanted it yesterday, apparently God hasn't decided yet on "His time".
His E-stem machine made it in finally and PT Andrew used it on his wrists and shoulders (I hadn't seen it used on the shoulders before). Dad and Justin both said it was different. Of course, Justin loves the e-stem. We're still waiting on the FES Bike; that is the one that Justin REALLY loves, it works his legs by electrode. He'll be on that thing everyday if you will let him.
He thought he felt a sensation in his right knee, but with a lot of things, it was fleeting and hasn't come back since. He checks it periodically and I keep thinking if it happened once, it can happen again. I just know he wishes some of these things would come back permanently.
I'm sorry for the delays in updating. I know so many of you have kept up with his progresses and/or stall days and have continued to encourage and pray. We appreciate you all for everything. Hopefully soon we can have some structure and a better routine so that we can update as they happen instead of Mama hurrying and worrying about forgetting to include something.
I hope this finds all of you staying warm & dry and in good health. We love you all!!!
Tuesday, January 12, 2010
Making progress
While we aren't completed with any part of the construction, we are starting to feel there may be light at the end of the tunnel. The bathroom is actually starting to look like a bathroom with the plumbers having spent all last Saturday getting sinks and such set up. Hopefully the electrician can make it this week and although our contractor states he's not happy with the floor, I've almost decided to leave well enough alone---not sure I can stand too many more days of people coming in and having to do and re-do the same things over and over (plus the smell of the chemicals they are using has ran us out of the house on too many occasions).
If we can get some issues worked out with our contractor and some messes fixed, we may be a step closer to getting both them boys moved into their rooms soon (I'm praying for at least end of the month with everything FINISHED--not just liveable, don't need any little projects of our own because we stay busy enough, they would never get done if we had to finish some of this stuff---ha ha).
The CT Scan results came in and Dr Voss indicated he felt it was just a mild case of scoliosis. He wants to see Justin again in 3 months to recheck if it has worsened and will make a determination then based on whatever he finds. I don't think he knows for sure why Justin's lower back is popping on him. Just another one of those weird things that Justin does to keep everyone confused over why he can't just be normal (text book style). He was able to get some Levoquin for his UTI and after 3 days, it appears to be helping. We've reduced the amount of ICs down considerably--only doing them when he feels like he's full but doesn't void on his own; however, last IC only help 200cc--which getting any amount out is good, helps continue fighting the risk of the UTI staying longer or not clearing up.
NO FES Bike or E-stem machine yet. FT Rucker is working on trying to find out the status of the approval for those. He's anxious to get those pieces of equipment, he loves the bike--says he can feel the burn in his legs like we would if we had spent the afternoon at a gym. I always love hearing things like that---continues to give me hope!!
He's been tired and weak as of late but believes that is a side-effect of the antibiotic he is taking; that and the fact that he's had a few restless, sleepless nights and we stayed up until 2:00 last night discussing issues of life (lol). Boy--that alarm clock went off early, but we managed to get through it. I shunned some of what I normally do off on his dad and said plenty of apologies for doing so but we all survived. I'll just make a stronger effort to have us back to getting to sleep by 12 like we've been doing (ha).
Betty/Joe---we continue to appreciate you and all of the rest of the family for keeping us in your thoughts and prayers. We will definitely update when we are finally done with renovations.
MaMa Hen---we continue to truly appreciate your encouraging words and I will let Justin know you are still committed to him getting the best care. I am currently working on how we can get him back to Shepherd without it costing me my job. If LOD appeal comes back still at a NO, then we have to see if my company will approve another absence without recourse. Need some serious prayers that this too shall work out. I feel confident he will come away with that March visit with positive progress. We are heading to Dothan on Friday afternoon sometime after I get off (probably after 2:00, have to meet with the Social Security office for Preston)---I'll give you a call when we get done to see if you are working or not and if we can meet up.
Well--I've managed to use up another 10 minutes of work time to update. Hopefully it won't cause too much trouble.
I'll try to get back on again tomorrow or the next day. As always, I feel like I've forgotten something; maybe I'll get it all next time.
We continue to appreciate, love and prayer for everyone that has helped us (even if you don't realize it) through all of this; lending an ear-shoulder-words of wisdom-or just reading and keeping us encouraged.
If we can get some issues worked out with our contractor and some messes fixed, we may be a step closer to getting both them boys moved into their rooms soon (I'm praying for at least end of the month with everything FINISHED--not just liveable, don't need any little projects of our own because we stay busy enough, they would never get done if we had to finish some of this stuff---ha ha).
The CT Scan results came in and Dr Voss indicated he felt it was just a mild case of scoliosis. He wants to see Justin again in 3 months to recheck if it has worsened and will make a determination then based on whatever he finds. I don't think he knows for sure why Justin's lower back is popping on him. Just another one of those weird things that Justin does to keep everyone confused over why he can't just be normal (text book style). He was able to get some Levoquin for his UTI and after 3 days, it appears to be helping. We've reduced the amount of ICs down considerably--only doing them when he feels like he's full but doesn't void on his own; however, last IC only help 200cc--which getting any amount out is good, helps continue fighting the risk of the UTI staying longer or not clearing up.
NO FES Bike or E-stem machine yet. FT Rucker is working on trying to find out the status of the approval for those. He's anxious to get those pieces of equipment, he loves the bike--says he can feel the burn in his legs like we would if we had spent the afternoon at a gym. I always love hearing things like that---continues to give me hope!!
He's been tired and weak as of late but believes that is a side-effect of the antibiotic he is taking; that and the fact that he's had a few restless, sleepless nights and we stayed up until 2:00 last night discussing issues of life (lol). Boy--that alarm clock went off early, but we managed to get through it. I shunned some of what I normally do off on his dad and said plenty of apologies for doing so but we all survived. I'll just make a stronger effort to have us back to getting to sleep by 12 like we've been doing (ha).
Betty/Joe---we continue to appreciate you and all of the rest of the family for keeping us in your thoughts and prayers. We will definitely update when we are finally done with renovations.
MaMa Hen---we continue to truly appreciate your encouraging words and I will let Justin know you are still committed to him getting the best care. I am currently working on how we can get him back to Shepherd without it costing me my job. If LOD appeal comes back still at a NO, then we have to see if my company will approve another absence without recourse. Need some serious prayers that this too shall work out. I feel confident he will come away with that March visit with positive progress. We are heading to Dothan on Friday afternoon sometime after I get off (probably after 2:00, have to meet with the Social Security office for Preston)---I'll give you a call when we get done to see if you are working or not and if we can meet up.
Well--I've managed to use up another 10 minutes of work time to update. Hopefully it won't cause too much trouble.
I'll try to get back on again tomorrow or the next day. As always, I feel like I've forgotten something; maybe I'll get it all next time.
We continue to appreciate, love and prayer for everyone that has helped us (even if you don't realize it) through all of this; lending an ear-shoulder-words of wisdom-or just reading and keeping us encouraged.
Tuesday, January 5, 2010
New Year Greetings
Once again I find myself apologizing for the delay and truthfully hope I have not discouraged anyone from continuing to support Justin with prayers and encouraging words/comments.
Christmas was surprisingly great!! The construction workers were nice enough to clear out some of their stuff and make way for a spot to have a small tree and gifts. We were a bit late in getting up and going Christmas day but all worked out well. We had wonderful food at Robbie's, family to visit with and old home movies that entertained us, including Preston and Coleman. It was a sight to see their reactions to what was going on in the movies.
Justin continued (and still does) to have a round with a UTI and severe high blood pressure to the point of being back on ICs 4 times a day. We are hoping to get seen soon and get some help in getting this all back under control.
Aunt Betty---while he had the CT Scan and x-rays done right before Christmas, they missed his appointment yesterday by 45 minutes and the doctor's office said they couldn't fit him in so they have to wait until Friday to go back for the results on what they found. I will try to get that updated once I know something. I am also hoping they can address the issues with the blood pressure and urinary problems.
The New Year rolled in a little quieter---fireworks of course for Preston but none of us could really stand this artic blast too long. We had to do the fireworks two nights in a row and still have bunches left over.
PT Andrew has been working Justin hard and was able to get him qualified for continued therapy through February. Justin has recently indicated he may not go back to Shepherd in mid-March, he believes they is nothing else they can do for him. I am trying to change his mind but also understand his concerns (part of him is worrying over me missing more time from work, he knows they advised I need to be back ready for full time by New Year's).
We'll figure something out on that one too and will update as the time draws nearer.
Of course, Justin continues to be the "oddity" by not reacting in the text-book fashion, thereby making everyone scratch their head in wonder. Some days he has sensations and others that goes away. Some days he's hurting, then that too goes away. So many things we continue to wonder if that is signs of a jump-start fixing to happen and others we just take it as it is and pray then let it alone for whatever will happen.
Construction is no where near complete, still no bathroom at all, some issues with the quality of what has been completed and we are still unable to get either of them moved into their rooms due to these issues. Still no bricks on the house either and no crew to speak of really since the holidays. They've started a new job in Dothan advising that they haven't left us, just needed a job to keep everyone busy full time and was waiting for the bathroom and brick man to get done but I have no clue when that will happen either. This has been a disappointing experience but I do continue to try to keep the spirits up and know that this too shall pass and it will be finished someday--which will help get things back on track and less stressed.
Prayer has been the salvation and we certainly appreciate the many we receive, as well as those continuing to be the shoulder or strength or lend the ear.
Well, I used up a few minutes while I was at work (hope they don't mind). Trying to get this done at home doesn't seem to work out too well, as you all have found out. We pray that all of you had wonderful Christmas holidays and safe and happy New Year's.
Love to you all, thanks for being there!!!!
Christmas was surprisingly great!! The construction workers were nice enough to clear out some of their stuff and make way for a spot to have a small tree and gifts. We were a bit late in getting up and going Christmas day but all worked out well. We had wonderful food at Robbie's, family to visit with and old home movies that entertained us, including Preston and Coleman. It was a sight to see their reactions to what was going on in the movies.
Justin continued (and still does) to have a round with a UTI and severe high blood pressure to the point of being back on ICs 4 times a day. We are hoping to get seen soon and get some help in getting this all back under control.
Aunt Betty---while he had the CT Scan and x-rays done right before Christmas, they missed his appointment yesterday by 45 minutes and the doctor's office said they couldn't fit him in so they have to wait until Friday to go back for the results on what they found. I will try to get that updated once I know something. I am also hoping they can address the issues with the blood pressure and urinary problems.
The New Year rolled in a little quieter---fireworks of course for Preston but none of us could really stand this artic blast too long. We had to do the fireworks two nights in a row and still have bunches left over.
PT Andrew has been working Justin hard and was able to get him qualified for continued therapy through February. Justin has recently indicated he may not go back to Shepherd in mid-March, he believes they is nothing else they can do for him. I am trying to change his mind but also understand his concerns (part of him is worrying over me missing more time from work, he knows they advised I need to be back ready for full time by New Year's).
We'll figure something out on that one too and will update as the time draws nearer.
Of course, Justin continues to be the "oddity" by not reacting in the text-book fashion, thereby making everyone scratch their head in wonder. Some days he has sensations and others that goes away. Some days he's hurting, then that too goes away. So many things we continue to wonder if that is signs of a jump-start fixing to happen and others we just take it as it is and pray then let it alone for whatever will happen.
Construction is no where near complete, still no bathroom at all, some issues with the quality of what has been completed and we are still unable to get either of them moved into their rooms due to these issues. Still no bricks on the house either and no crew to speak of really since the holidays. They've started a new job in Dothan advising that they haven't left us, just needed a job to keep everyone busy full time and was waiting for the bathroom and brick man to get done but I have no clue when that will happen either. This has been a disappointing experience but I do continue to try to keep the spirits up and know that this too shall pass and it will be finished someday--which will help get things back on track and less stressed.
Prayer has been the salvation and we certainly appreciate the many we receive, as well as those continuing to be the shoulder or strength or lend the ear.
Well, I used up a few minutes while I was at work (hope they don't mind). Trying to get this done at home doesn't seem to work out too well, as you all have found out. We pray that all of you had wonderful Christmas holidays and safe and happy New Year's.
Love to you all, thanks for being there!!!!
Tuesday, December 22, 2009
Trudging forward
First to the many that continue to follow Justin's progress, thank you and forgive our delay yet once again.
Mama Hen--Justin's heading to SEAMC Wednesday 12/23 for a CT Scan and lower back x-rays. ETA should be 8:00 a.m. I will remind him to give you a call to see if you are in the building or if you were blessed with a few much needed days off.
Ms. Lue--Thanks for the encouragement. It sometimes takes a while to realize so many things are only temporary, regardless of how long it seems it will take to accomplish a goal, this too shall pass and a year from now we will barely remember the anxieties we feel right now. We love you much and appreciate you!!!
For LT.--met your dad yesterday. Seems like a very sweet man and it seemed to perk Justin to have him visit. I sometimes forget you and your family are long-time acquaintances to the Medley family (small world).
For all others not specifically named---there are so many of you that continue to pray and ask for updates, so many that encourage and offer a shoulder. Those are the blessings I say "thank you God" for daily. Even through the moments when I waiver in my faith, I am brought back to the many that keep me grounded and help me get back on track. Bless you all and thank you!!!
For the latest update:
Justin has been experiencing some popping of his spine in his lower back area for a few weeks now. We have finally managed to get an appointment with SEAMC to get a CT Scan of his upper spine because neurology believes it is "leaning". The lower back x-rays will hopefully explain why he is getting the popping which involves throbbing pain through his bottom and legs.
He has also been battling disagreements with his blood pressure, being low some mornings then high and as of late he has been having 182/98 with no obvious signs of what is causing the distress. Last night's episode was accompanied with a massive headache yet we were unable to locate a reason. We massaged his head and exercised his legs, took his shoes off and checked for pressure points--he said it wasn't urinary as for as he knew or bowel. Hopefully some of these tests tomorrow will open doors for discussion as to what is going on.
Therapist Andrew has him plaing Rock Band Drums on a Wi and he's pretty good at it. Wears him out but he's doing super. Also has improved his strength in his left arm to the point that Andrew is at a loss for what else he can do to really push that side. Justin continues to be weird with his body and reactions though. Left side vs. right side, nothing seems to be the "norm" with Justin. We just continue to pray that these are positive signs for recovery and improvement.
Functionality continues to be a slow progress. While his strengths improve weekly, no movements are new to report. Some motion in his thumbs but nothing by way of full hand improvement and some days his right wrist goes weak on him. He continues to have days where sensation is fleeting---can feel a knee today but that same feeling is lost tomorrow. He also indicates some days he can distinguish hot or cold, yet that also comes and goes.
We pray his body is just waiting for that right jump start.
Construction has been slow and I had a momentary meltdown; however, 'tis the season to believe in miracles and know that we shall overcome this portion of the journey as well. It may take us 6 months to wash down all the dust and clean floors and wipe down furniture and reclaim what we threw into what closet or storage unit, etc but there again, it goes back to having faith that it is temporary and will be back to a better routine that we had 2 months ago when we first got him home.
He has been approved for the FES Bike and E-stem machines. This is a wonderful thing. The FES bike uses electrodes to work his legs and he loves it. The e-stem is smaller and can work his abdomens, wrists and several other areas which is also fantastic.
He remains optimistic and upbeat even through the rough nights and the intense spasms he has been having the last few weeks. While some are tough enough to prompt some "mini-fits" that startle me sometimes, he regains himself and works through them.
His chairs are working out great and he even decided to go 'mud riding' yesterday. Of course, that meant a lot of sweeping of tires (and the mud was red and damp, yuk) but it gave us one more thing to laugh about instead of cry!!! And it was encouraging to have him outside playing with that boy of his!!
Well, duty calls---got a precious thing wanting some milk. Will definitely try to update again soon. Forgive the delay, first our computer crashed, then we had to lose it for a while witht he construction going on--we have a small corner in the living room that accommodates us for now and I wanted to give an update to you all.
I'm sure I've forgotten something, but will fit it in the next time.
Merry Christmas to you all, be safe, be blessed and we love you all!!!!
Mama Hen--Justin's heading to SEAMC Wednesday 12/23 for a CT Scan and lower back x-rays. ETA should be 8:00 a.m. I will remind him to give you a call to see if you are in the building or if you were blessed with a few much needed days off.
Ms. Lue--Thanks for the encouragement. It sometimes takes a while to realize so many things are only temporary, regardless of how long it seems it will take to accomplish a goal, this too shall pass and a year from now we will barely remember the anxieties we feel right now. We love you much and appreciate you!!!
For LT.--met your dad yesterday. Seems like a very sweet man and it seemed to perk Justin to have him visit. I sometimes forget you and your family are long-time acquaintances to the Medley family (small world).
For all others not specifically named---there are so many of you that continue to pray and ask for updates, so many that encourage and offer a shoulder. Those are the blessings I say "thank you God" for daily. Even through the moments when I waiver in my faith, I am brought back to the many that keep me grounded and help me get back on track. Bless you all and thank you!!!
For the latest update:
Justin has been experiencing some popping of his spine in his lower back area for a few weeks now. We have finally managed to get an appointment with SEAMC to get a CT Scan of his upper spine because neurology believes it is "leaning". The lower back x-rays will hopefully explain why he is getting the popping which involves throbbing pain through his bottom and legs.
He has also been battling disagreements with his blood pressure, being low some mornings then high and as of late he has been having 182/98 with no obvious signs of what is causing the distress. Last night's episode was accompanied with a massive headache yet we were unable to locate a reason. We massaged his head and exercised his legs, took his shoes off and checked for pressure points--he said it wasn't urinary as for as he knew or bowel. Hopefully some of these tests tomorrow will open doors for discussion as to what is going on.
Therapist Andrew has him plaing Rock Band Drums on a Wi and he's pretty good at it. Wears him out but he's doing super. Also has improved his strength in his left arm to the point that Andrew is at a loss for what else he can do to really push that side. Justin continues to be weird with his body and reactions though. Left side vs. right side, nothing seems to be the "norm" with Justin. We just continue to pray that these are positive signs for recovery and improvement.
Functionality continues to be a slow progress. While his strengths improve weekly, no movements are new to report. Some motion in his thumbs but nothing by way of full hand improvement and some days his right wrist goes weak on him. He continues to have days where sensation is fleeting---can feel a knee today but that same feeling is lost tomorrow. He also indicates some days he can distinguish hot or cold, yet that also comes and goes.
We pray his body is just waiting for that right jump start.
Construction has been slow and I had a momentary meltdown; however, 'tis the season to believe in miracles and know that we shall overcome this portion of the journey as well. It may take us 6 months to wash down all the dust and clean floors and wipe down furniture and reclaim what we threw into what closet or storage unit, etc but there again, it goes back to having faith that it is temporary and will be back to a better routine that we had 2 months ago when we first got him home.
He has been approved for the FES Bike and E-stem machines. This is a wonderful thing. The FES bike uses electrodes to work his legs and he loves it. The e-stem is smaller and can work his abdomens, wrists and several other areas which is also fantastic.
He remains optimistic and upbeat even through the rough nights and the intense spasms he has been having the last few weeks. While some are tough enough to prompt some "mini-fits" that startle me sometimes, he regains himself and works through them.
His chairs are working out great and he even decided to go 'mud riding' yesterday. Of course, that meant a lot of sweeping of tires (and the mud was red and damp, yuk) but it gave us one more thing to laugh about instead of cry!!! And it was encouraging to have him outside playing with that boy of his!!
Well, duty calls---got a precious thing wanting some milk. Will definitely try to update again soon. Forgive the delay, first our computer crashed, then we had to lose it for a while witht he construction going on--we have a small corner in the living room that accommodates us for now and I wanted to give an update to you all.
I'm sure I've forgotten something, but will fit it in the next time.
Merry Christmas to you all, be safe, be blessed and we love you all!!!!
Saturday, December 12, 2009
Christmas Spirit
Here we are once again finding me apoligizing for the delay. So many of you have been our inspiration, strength and motivation to move forward and we continue to pray for you all and thank God for you all and feel bad that we don't update enough!!
Things since Thanksgiving---I wish I could say we are slacking on updates because of the holiday season but it is more so because things are that hectic (go figure---like they could get more chaotic than the last 5 months)!!
We have no tree up yet--not sure where to put one based on the home-modifications going on. That in itself is a new story---gotta love contrators!! A 2-3 week event has found itself lasting 5 so far and that's just outside work, no interior work has been done. Did come home Friday to find the new plumbing pipeline leaking and flooding the livingroom closet......no idea why or what will become of that, another day in paradise!!
What we do know:
Doctor visit with NeuroSpine did X-rays and Justin's spine is "leaning like the Tower of Peaza". They want to do a CT Scan and based on some issues he has been having with his lower vertebrae, they want to do some X-rays for that. We are waiting a call to let us know when that is to be done because Doc's office isn't equipped for these and we have to wait to let us know when SEALMC can do them. He goes back to Doc's office on Jan. 2010----------new year, new journey, new blessings, new thanksgivings!!
For those questioning:
We did a follow up with Neuro just to establish a local doc in case we had a need; we thought it was routine. The neck x-ray apparently showed something that concerned them to the point of mentioning a new surgery---going in through the back of the neck and even stated that due to the original urgency and location that perhaps they didn't recognize the tendancy towards his "leaning". Now they have to check if the spine has "fused" or not and determine next step. Justin said "hell no" to another surgery, but we think we have him contemplating that this may play a factor in some things coming back and others not.
Urology wasn't as concerned as we thought they would be so I guess all is well with that part of things. VA had already told us that kidneys and such were different but working well. Gotta love Justin and all of his uniqueness--keeps everyone else on their toes I guess!!
What other portion we didn't expect was his lower back "popping" and Neuro didn't know what to think of that. We have to have x-rays done. When it pops, it gives him a LOT of new throbbing, pain and anxiety about what is going on. NO NEW MOBILITY---just a lot of feeling, throbbing, uncontrolled activity.
WE WILL UPDATE ONCE WE HAVE AN APPOINTMENT AND ANY RESULTS!!
So much more to update on but must do what have to!!
Also, Scotty isn't feeling well at this time--ended up at ER with bad pain which turned out to be possible gout. Please pray that he will overcome his illnesses and rebound!!
So much to update on, house-transportaton-VA-new equipment-lack of equipment-loss of benefits-LOD-----
MaMa Hen---We have NOT forgotten you!! Seems like Rucker has an appointment every 2 weeks and with contractors being out, they get hectic for dad----we WILL be calling you; just can't pinpoint when, sorry!!
Betty/Joe---love you guys!! Charles/Carol---Merry Christmas!! Wayne--thinking of you through this season and pray you will be okay with the loss of Peggy!!
CLUTCH---Justin said Hello---
Anyone not mentioned----we are thinking and praying and thankful and trying to fit it all in. AND will try again to update---so much going on, so little time. I have to go do the "bedtime" stuff now.
Love you guys, Happy holidays, thank each of you............
Things since Thanksgiving---I wish I could say we are slacking on updates because of the holiday season but it is more so because things are that hectic (go figure---like they could get more chaotic than the last 5 months)!!
We have no tree up yet--not sure where to put one based on the home-modifications going on. That in itself is a new story---gotta love contrators!! A 2-3 week event has found itself lasting 5 so far and that's just outside work, no interior work has been done. Did come home Friday to find the new plumbing pipeline leaking and flooding the livingroom closet......no idea why or what will become of that, another day in paradise!!
What we do know:
Doctor visit with NeuroSpine did X-rays and Justin's spine is "leaning like the Tower of Peaza". They want to do a CT Scan and based on some issues he has been having with his lower vertebrae, they want to do some X-rays for that. We are waiting a call to let us know when that is to be done because Doc's office isn't equipped for these and we have to wait to let us know when SEALMC can do them. He goes back to Doc's office on Jan. 2010----------new year, new journey, new blessings, new thanksgivings!!
For those questioning:
We did a follow up with Neuro just to establish a local doc in case we had a need; we thought it was routine. The neck x-ray apparently showed something that concerned them to the point of mentioning a new surgery---going in through the back of the neck and even stated that due to the original urgency and location that perhaps they didn't recognize the tendancy towards his "leaning". Now they have to check if the spine has "fused" or not and determine next step. Justin said "hell no" to another surgery, but we think we have him contemplating that this may play a factor in some things coming back and others not.
Urology wasn't as concerned as we thought they would be so I guess all is well with that part of things. VA had already told us that kidneys and such were different but working well. Gotta love Justin and all of his uniqueness--keeps everyone else on their toes I guess!!
What other portion we didn't expect was his lower back "popping" and Neuro didn't know what to think of that. We have to have x-rays done. When it pops, it gives him a LOT of new throbbing, pain and anxiety about what is going on. NO NEW MOBILITY---just a lot of feeling, throbbing, uncontrolled activity.
WE WILL UPDATE ONCE WE HAVE AN APPOINTMENT AND ANY RESULTS!!
So much more to update on but must do what have to!!
Also, Scotty isn't feeling well at this time--ended up at ER with bad pain which turned out to be possible gout. Please pray that he will overcome his illnesses and rebound!!
So much to update on, house-transportaton-VA-new equipment-lack of equipment-loss of benefits-LOD-----
MaMa Hen---We have NOT forgotten you!! Seems like Rucker has an appointment every 2 weeks and with contractors being out, they get hectic for dad----we WILL be calling you; just can't pinpoint when, sorry!!
Betty/Joe---love you guys!! Charles/Carol---Merry Christmas!! Wayne--thinking of you through this season and pray you will be okay with the loss of Peggy!!
CLUTCH---Justin said Hello---
Anyone not mentioned----we are thinking and praying and thankful and trying to fit it all in. AND will try again to update---so much going on, so little time. I have to go do the "bedtime" stuff now.
Love you guys, Happy holidays, thank each of you............
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