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Toni D
Moderator
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Posted: Mon Jul 27th, 2009 15:31 |
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Hey Barney,
Just thought I would share this with you. My father was on a feeding tube after his surgery last year and the hospital's dietician order the D-free formula of Calcilo XD. Hope you can get them to order that for your grand.
Feel good and be blessed.
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DX sarcoid-1970 glaucoma high BP asthma allergies| Meds-Lasix Xopenex Nevanac Cardizem Nizoral Cream| NoIRs No D/sun | 08/05 25D=26, 1,25D=38| 07/07 25D=<4| BeniQ6H 09/27/05| ModPh2 07/06; Ph2 09/07|Ph3 04/08| 12/08 25D=<4| 05/09 25D=<4, 1,25D=27
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Sue Lyons
Member in Phase 3
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Posted: Mon Jul 27th, 2009 18:36 |
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| My thoughts and prayers are with you and your family at this sad time.....I am sorry for your loss....Sue
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Sarcoidosis/lungs, diabetes II, Ph3 9/07, oxygen, low lux home, limited outings covered up, 25D=08. DLCO=25%'04;DLCO=39%'09
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anniemac48
Member in Phase 3
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Posted: Mon Jul 27th, 2009 21:45 |
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Dear Barney, it has been quite a while since I been on the computer for long and have just read you last 3 pages of post. My love and prayers are with you and your family, I believe prayer is so powerful.
Love Annie
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RA 125D42 Ph1 Mar07 NoIRs Ph2 Jun07 25D7 Jan08
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BARNEY
Moderator
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Posted: Tue Aug 4th, 2009 04:43 |
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UPDATE (lightning)
Jessica was able to shrug her shoulders twice for no and once for yes. They asked her if her name was Amber and she shrugged her shoulders twice, asked about another name, she did the same, but when they asked if her name was Jessica, she shrugged her shoulders only once.
She has had a very emotional week and they have tried to comfort her. They also gave her a med to help calm her. She has also lifted her head for her dad to put a pillow under her head.
Jackie, is doing better w/the pain by taking ibuprofen, which I have warned her can be bad for her to take on a regular basis. She is still not going far from home so I am sure she is emotionally upset still.
Babies seem to be doing better, Tabby does not like to get too far from Denise (her grandmother). None of them do well during storms….they all tingle and hurt as does Jackie and Jessica.
Please continue prayers which I thank you so much for.
Luv, Barney
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Millie
Member in Phase 3
| Joined: | Mon Jan 15th, 2007 |
| Location: | Afton, New York USA |
| Posts: | 216 |
| Status: |
Offline
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Posted: Tue Aug 4th, 2009 23:25 |
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| Barney, You and your family are always in my prayers, Millie
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sarcoidosis/pulmonary, muscles, HTN, MVP, PHTN, Hx GI obstruction, melonoma, Ph1,1/07, MPh2 3/07, Ph2 9/07. verapamil, lisinopril, probiotics, vicodin/motrin,NoIRS D25-5 3/07,7/08-VitD-11, D2-4,D3-11.
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Santa Monica
Member in Phase 3
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Posted: Wed Aug 5th, 2009 03:14 |
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Barney,
I have been wondering where you've been the past few weeks and only stumbled onto this news today. I've read the whole story from the beginning, and have been crying the whole time.
You can add one more friend to the many who pray for you and your loved ones every day.
Glad to know that you are hanging in there, and, with your love and dedication, you will all make it!
Mindy
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Sarcoidosis/lungs & lymph nodes, CFS Hashimoto's 125D43 25D24 Armour Lunesta Ph1Mar08 25D32(Apr08) Ph2May08 abx brk r/t UTI restart Ph2Jun08 NoIRs low lux home lite exp r/t work 25D19 1,25D54 (8/28/08) brkDec08 wedding restart Ph2Jan09, Ph3 Mar09, Dec
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treefrog
Member in Phase 2
| Joined: | Mon Mar 9th, 2009 |
| Location: | |
| Posts: | 2 |
| Status: |
Offline
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Posted: Wed Aug 5th, 2009 17:20 |
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Barney,
You and your family are still in my thoughts and am happy to hear that jessica is improving slightly. Please keep us posted on how you are all doing.
Take care and am sending you my best wishes,
Treefrog
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Deb Grabetz
Member in Phase 3
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Posted: Thu Aug 6th, 2009 00:19 |
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Barney,
Thanks for the update I've been thinking about you all. Take care. Deb
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D125,42,D125,18 (5/09) Ph1,7/07, Ph2,3/08,cover up, NoIRs, low lux home,Back to work after 2 yrs; 4/07D25/11 1/08D25-0 Weaned Pred with MP/Massage
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BARNEY
Moderator
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Posted: Tue Aug 11th, 2009 04:21 |
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UPDATE:
Jessica is making leaps and bounds recovery:
She can now lift her head on her own and shake her head yes or no. She knows who everyone is and shakes her head yes/no when they ask if their name is (so/so), if they misstate it she shakes her head no and when they say their right name she shakes her head yes.
She answered all her son’s (7) questions as to who she was and who he was. (am I your son?, she shook her head yes).
The doctors were wrong……..she recognizes everyone, remembers a lot of her past and has emotions. She laughs at things, cries at things and shows faces of shock at thing she is told. Of couse, this is not audible yet.
She lifts her head on her own so that we can reposition her pillow and put some pads on her neck…..she is sweating and that is causing a rash, thus the pads to keep her neck dry. When asked is she is coming home soon, she shakes her head yes. If she doesn’t know the answer or does not care about the situation, she just shrugs her shoulder.
She is actually behind those beautiful eyes of hers. She is even participating in when she needs pain meds and when she doesn’t. She waited a little tooo long to get her meds today and ended up hurting really bad before they kicked in. But she is doing great.
They put her on a ‘table’ (she was secured w/ straps around her waist and they raised it up to a 40 degree and she was actually standing on her feet with some of her weight.
They also capped her trach for talking (she is not talking yet) but if she can wear it for 8/9 hrs for 3 days, then they will give her a swallowing test and if she can pass it, then she can have some real food (probably soft only, but is will be food).
Ben and I are back here in Albq…….getting her house ready for her come home, whenever that should be.
Being w/grandparents all the time…..great grandbabies are starting to cop an attitude a little and they are having to be talked to a little. You know how kids can take advantage of a situation. They still tingle when it lightnings.
Jackie is trying to take care of the babies to give grandparents a break and help out mom and dad as much as possible. Lots of work going on. She also still tingles. Pain is calming a little for her.
The grandparents are looking tired and still trying to deal with all this tragedy. My heart aches for them as well as my heart just aches for what the children are going thru even the ‘bigger’ children. I miss Jarrod a lot and always will. He was a true honor to his country. How ironic that he did all the funeral services for the Army when he was in high school and a soldier.
Need to get to bed…….goodnight, I love you all for your kind words, your prayers and please keep praying for this family, as there is a lot to still deal with.
Luv, Barney
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Sue Lyons
Member in Phase 3
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Posted: Tue Aug 11th, 2009 04:48 |
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| Oh Dear Barney and family...You write of good news..."Congratulations" on everyone's hard work getting results...You also write of continued pain in body and spirit...much harder to heal. You and your family are in my thoughts and prayers.....Take good care of yourself....Sue
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Sarcoidosis/lungs, diabetes II, Ph3 9/07, oxygen, low lux home, limited outings covered up, 25D=08. DLCO=25%'04;DLCO=39%'09
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Sunbeam
Member in Phase 2
| Joined: | Thu Dec 14th, 2006 |
| Location: | Perth, Australia |
| Posts: | 362 |
| Status: |
Offline
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Posted: Tue Aug 11th, 2009 07:40 |
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So glad to hears some positive news on Jessica nd the rest of the family. It will continue to be positive even though it is taking a while and the road ahead is long.
We keep you all in our thoughts and prayers,
Lynn
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CFS. gen neuro. muscular tightening whole body pulsates|ADL's limited| 125D 30 MP 4/07 Panadol Mersyndol Noirs. Low lux home homebound. ph 2 1/2/08 25D <6 8/08
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Scarlett
Member in Phase 3
| Joined: | Mon Mar 3rd, 2008 |
| Location: | Ohio USA |
| Posts: | 127 |
| Status: |
Offline
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Posted: Tue Aug 11th, 2009 15:18 |
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Dear Barney:
What a blessing to hear the improvements with your loved ones. May they only continue to get stronger. Please know I, along with many others on this site, appreciate all you do for us, especially during this crisis in your life. Take care and know that I and many others are praying for you and your precious family.
Scarlett
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Sarcoidosis, gastric paresis, osteopenia, hypotension, migraines, dry eye,insomnia, transient global amnesia,endometrosis. Initial 125D48, 25D58, MP-3/3/08, PhaseII-3/28, Phase III 11/08 D Level 18 as of 5/09
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Pipistrelle
Member in Phase 2
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Posted: Tue Aug 11th, 2009 17:38 |
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Oh Barney, what a journey you and your family are on. Your description of what Jessica can do is so vivid, and it's so heartening that she is able to communicate and make her feelings known. Must be such a comfort to see each tiny change for the better.
Wishing you all wellness and praying for you all,
Morag xxx
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Sarc lungs, uveitis '90 dx '92, pred 18 mo '93-'94; D25 31 Nov 06, D1,25 35 Nov 06, NoIRs Feb '07, D restrict Nov 06, low lux home, cover up, light exp commute 90 mins/day Mon, Tues, Wed
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BARNEY
Moderator
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Posted: Sat Aug 22nd, 2009 15:48 |
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UPDATE # 5
Got a whole lot to tell you this time!!!!
Jessica is talking in sentences now thru her cap on her trach……..she is also helping to make decisions for her recovery. They read all the info on meds/techniques they get about these and then she says what she wants to do. The docs were wrong, terribly wrong……..she is recovering w/all her faculties in place. I believe a lot of her recovery is due to a Mom, Dad and Sister (Jackie) who are determined that she is coming back to them as whole as she was.
Jessica has pursed her lips and kissed all 4 of her children (19 mos to 7 yrs). Also contribute her recovery to the children….who are spending a lot of time making her think to answer them and they are loving on their mommy. When Alex (7) looked at a picture of his Mom at their house….he said to me ‘I miss my mommy’. I just about cried, but tried to stay strong for him…..I said ‘I know you do sweetheart and as soon as Mommy is better….she will be back home w/you’.
I hope no one reading this ‘takes their life for granted’ cause you never know what will happen….even the simplest of family outings can turn into a nightmare of such magnitude. This incident has touched so many lives, it is unbelievable. Their faith has even been challenged.
Now for the newest:
Monday or Tuesday Jessica will be flying by medical jet to Denver, CO to a new hospital called: Craig Rehabilitation Hospital. http://www.craighospital.org/ If you google them, you can go to traumatic brain injury http://www.craighospital.org/TBI/ipprogram.asp and then click on the video (last choice there) http://www.craighospital.org/Video/TBI.asp and it will give you a beautiful view of what she will be receiving for help there. It looks great and Denise and Jackie will be going w/her cause the family is so encouraged to help/learn w/ her recovery. They have all kinds of outings for them too (when they are up to it). They also have housing on campus for the families.
They say that the recovery is usually accomplished in 10 to 50 days. I am so looking forward to her coming home (recovered).
So, to all of you are praying for our family, please continue, cause it is not overwith yet and I thank you for all your kind words and prayers.
Luv, Barney
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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JanEE
Member in Phase 3
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Posted: Sat Aug 22nd, 2009 17:29 |
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Dear Barney,
I was so happy to read your latest update. The hospital they are sending Jessica to sounds wonderful, and so does Jessica's progress. It sounds like Jackie and Denise will also be able to stay there free of charge. Great!
I felt a surge of joy when I read that Jessica is speaking in sentences now, and is able to kiss her babies---and that she is proving the doctors wrong. She has been in my prayers and I will continue to pray for her speedy total recovery.
This has really been a test for you too, but I feel your strength in your posts. Take care, and God bless you all.
Love,
Jan
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CFS, FM hypothyroid 125D69 Ph1 5/05 Armour thyroid B12 for low blood levels NoIRs limited outings covered Ph2 9/06 Ph3 8/07 25D-5-4/09
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Deedee
Member in Phase 2
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Posted: Sun Aug 23rd, 2009 03:00 |
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Great news, Barney. The rehab hospital should help a lot. That is their specialty.
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Sarc in lymph nodes. D14. Back to Phase I, 100 mino Benicar 4X/day. Lipids high. 7/07 check-up: Normal PFTs/CXR improved; Quecentin/guaifensin if lymph nodes hurt. Spleen pains. Began MP 8/08
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BARNEY
Moderator
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Posted: Sun Aug 23rd, 2009 06:16 |
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Jessica asked about her husband today and they had to tell her that he did not make it. Of course, she cried and said it was not fair.
I hope this does not set her back.
Luv, Barney
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Limburg
Member in Phase 2
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Posted: Sun Aug 23rd, 2009 09:33 |
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Hi Barney,
I believe Jessica's progress just goes on now, despite hearing of her husbands fate.
My former husband, who was in a car accident ( in which his friend died) on his eighteenth, was in a coma for four weeks, woke up blind, desorientated, lost memory,epilepsy attacks. Half a year after the accident his condition was back to normal, exept the fact that he was clairvoyant on a certain level, things like who would come to visit him, or how many puppies his dog was going to become. He never knew the combination of the winning number in a lotterie but the most important, his health, was back and stayed. Today he is 52 and in a very good condition.
So I don't believe this will set Jessica's condition back, but I'll keep praying for her quick recovery.
Annemarie
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MS,DX 1997,Auto-immune hepatitis,DX 2008, MP start jan.2009. 25D: 20.4 (october 7,2009)25D: 12.5 (november 23,2009)
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Millie
Member in Phase 3
| Joined: | Mon Jan 15th, 2007 |
| Location: | Afton, New York USA |
| Posts: | 216 |
| Status: |
Offline
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Posted: Mon Aug 24th, 2009 02:02 |
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| Barney, What great news, so glad Jessica is doing better. She seems to have a lot of inner strength. Keeping you all in my prayers, Millie
____________________
sarcoidosis/pulmonary, muscles, HTN, MVP, PHTN, Hx GI obstruction, melonoma, Ph1,1/07, MPh2 3/07, Ph2 9/07. verapamil, lisinopril, probiotics, vicodin/motrin,NoIRS D25-5 3/07,7/08-VitD-11, D2-4,D3-11.
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Sunbeam
Member in Phase 2
| Joined: | Thu Dec 14th, 2006 |
| Location: | Perth, Australia |
| Posts: | 362 |
| Status: |
Offline
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Posted: Mon Aug 24th, 2009 03:39 |
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Hi Barney,
Our prayers are with Jessica and the family as she follows her long road to recovery.
We are so pleased with her progress. The hospital looks great.
Bless you all,
Lynn
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CFS. gen neuro. muscular tightening whole body pulsates|ADL's limited| 125D 30 MP 4/07 Panadol Mersyndol Noirs. Low lux home homebound. ph 2 1/2/08 25D <6 8/08
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