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Thread: What Is Next For Jonathan?

  1. #81
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    ((((((Hugs to All)))))) ~

    ANN ~

    Stick with me, kiddo. I guarantee I'll take you in dozens of different directions!

    THE LEAKING SAGA

    Catheter is still leaking. I had to reinsert it again at 2:30 this morning, and then again at 11:00 this morning. Both times, his underpad and pillowcase (to catch the extra leakage, which is always present) were soaked.

    It's incredibly frustrating, particularly when we're trying to treat the wound on his testicles. Of course, the urine is causing the adhesive to fail!

    Every time I deflate and reinflate the balloon, I worry that it's going to break. I also fear infection, although I am careful to clean my gloves and the catheter with alcohol prior to reinsertion. I may switch to Betadine, since this doesn't seem to be ending any time soon.

    We haven't had this problem with the catheter sliding out for months. I don't know what the problem is now. His nurse and I put it in so far that I joke it's going to come out of his nose!

    T-SHIRTS

    I'm glad that John mentioned his employee, because instead of giving to a charity, I can give these clothes to him and his family. One caveat: the clothes have been sitting in Jon's closet for many years and are dusty. They should be washed before wearing them. And, I am not going to wash all of these clothes!

    I just look at the stacks and bins full of laundry and say, "Where do I begin?!" Today, it was Jon's urine soaked stuff and then Jim's "doctor/infusion" clothes ~ buttoned shirts (port access) and cargo pants (pockets for putting things).

    A HISTORY OF VIOLENCE

    My morning walk was brisk and cautious after last night. I searched the internet today for any kind of information about the fly over last night, but I found nothing. Nothing on the police department site. This is a bit unsettling. A copter flies over our neighborhood for a couple of hours, then announces that we should stay inside, and nothing about it anywhere?

    And about that announcing ~ we had our windows open, which is how I heard it. Most homes have double/triple pane glass, so it's likely many residents didn't hear the announcement. Plus, they're probably watching TV.

    Not to mention that I couldn't understand what was being said beyond "stay in your home" and "call the police department."

    Let me just go on record: we have a terrible police department. I mean really, really, really awful.

    No, they did not find nor prosecute any of the gang kids, who attacked Jim and Jon in our van in front of our house. I was in the house feeding Michael. We didn't have cell phones then, so I couldn't warn Jim that these kids were gathering at the house across the street.

    I called the cops, along with most of the other neighbors. The dispatcher asked me if the kids had guns. "Do you want me to go out there and get shot to find out? Of course they do! This is a GANG!"

    The cops took their sweet time getting here, and the kids were long gone. The cops told us that they had bigger problems on the "other side of the tracks."

    A few days later, an officer appeared with the high school yearbook, and he asked Jim to go through dozens of pages to see if he could identify any of the gang kids.

    Here's the thing about these kids: they all cut their hair the same style, wear the same clothes, black and white, drive the same color/model Honda, speak the same. They do this so they won't stand out, and it works.

    We watched these kids deal drugs, the girls prostituting, the fights and heard the filthy, vile language they spewed. Their "father" moved to Fresno, and their mother was absent. They were on their own, unsupervised, as renters.

    They broke the side window of our custom van, which took 6 weeks to get replaced and cost us $1500, as our insurance claim was denied.

    In 2000, there was a gang shooting in the housing development above us, which is pretty high end and surrounds the golf course. One kid died, and two others were wounded. They drove off and took the wounded kids to the hospital, dropped them off, and fled.

    We heard the shots (it was 5 a.m.), but we didn't know where they came from. No one in our neighborhood called the police. There were no sirens, nothing.

    The kids were all tracked down eventually, and put in prison, as some of them were over 18. The boy, who was killed, was the son of my former GYN.

    I have and will always have PTSD from these experiences, which is why I freak out, when I see a copter hovering over our neighborhood. People are stunned, when they hear these stories, because we live in a "nice" neighborhood. I will just say again that this is a cultural thing. Part of it is because the parents of these kids are frequently absent, working to afford the lifestyle they want and traveling to their home country often, as well as being tied to the golf course and social events.

    I see less of that now. Younger parents now have their parents living with them to provide child care and supervision. They also spend more time with their children on weekends and evenings. I do hope that this is the change they needed and will remain this way for future generations.

    Told ya I'd take you in dozens of directions!

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  3. #82
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    ((((((Hugs to All)))))) ~

    I will attempt to make this much shorter than usual. I wrote this in spurts into the late night yesterday (Friday) and was too tired to finish and post it.

    TURNING

    I cancelled Johnís visit yesterday, because Jon and Jim were sleeping. Jon is having sleep issues again.

    Instead John came today at 12:30. I had to wake Jon, but it went fine.

    Johnís mom stopped taking her meds and went into the hospital on Wednesday, came home today. Her condo sold, and heís had so much to do to finalize things. His plate is overflowing.

    PHYSICAL THERAPIST

    PT arrived promptly at 2:00, and we were so happy to see him, as itís been a couple of years.

    Jonís Diagnosis: Not lymphorrhea. This is not lymph fluid. This is water.

    Lymph fluid is sticky and colored. When pressing on Jonís leg, he said, ďIt doesnít feel like clay. And he has depression in his skin. This is water.Ē

    Remedy: Larger sized compression tubes from knee to ankle for short periods to get the water moving. The reason the fluid went to Jonís gut and chest was because the stockings we were using were too tight. He ordered two sizes for us, and advised us on application and duration.

    Massage: He showed us an easier massage on target areas only to keep lymphedema at bay. We were massaging from top to toe, but now he wants us to just do the core sites: above the navel, groin and behind the knees. He knows weíre exhausted, and is helping us to lessen the length of time we stand to massage Jon.

    Mattress: He agrees that the rotating from side to side mattress would benefit Jon. He gasped when we told him that we would buy it for Jon. But we've bought all of his beds, all of his mattresses, because Medicaid provides rentals that break in the middle of the night. Been there a few times, but never again.

    Continuing Consults: PT set us up with monthly visits, coordinated on the day of Jonís nurse visit, so that we donít have to schedule 2 different days. Heís also set up PRN, in case we have a problem, so that he can visit.

    NURSE VISIT

    Jonís nurse arrived late and missed the PT, but weíll get that right next month. They know and love each other, and both were looking forward to seeing the other.

    No cath and trache change today, because she didnít have time, and I was too exhausted to get out all of the supplies. Meanwhile, Jon was asleep again.

    Her main purpose was to get my signature on her iPad, so that she could spend the weekend writing Jonís recertification for services, which she has to do every 2 months. It is due on Sunday.

    Changes are happening in the agency, and none of them are good. PT said, ďWhen did we become a profit center? We are supposed to be missionaries to the people in need." (Itís a Catholic hospital system.)

    Jonís nurse will return next Friday for the cath and trache change. And she will help us turn Jon, because John will be on vacation with his family.

    She checked Jonís toe (while he was sleeping) and suggested that I put Betadine on it, rather than Neosporin, which is apparently no longer effective from overuse.

    She brought us 6 fantastic, delicious avocados fresh from her tree. We have to wait for them to ripen, but when they do, well, there are no better avocados than these. Worth the wait, plus they last for days in the fridge without turning brown. FRESH! makes all of the difference.

    MY THEORY ABOUT JONíS SLEEPING


    Itís the water overload. Heís not metabolizing his seizure meds properly, which means they could be building up. Plus just being full of water and so heavy Ö that would be tiring. Thankfully, his SATS and heart rate are good.

    Jim and I agreed not to alter his meds dosages, until weíve tried the larger compression tubes. His urine output is very good, but clearly, itís not enough. And we do not want to give him Lasix.

    GTUBE CHANGE

    I emailed Jonís GI via the health portal, and he replied that he will be out of town (vacation obviously) until June 8. So, we wonít get the tube changed until the middle of June, and that makes me nervous. What if the tube falls apart and fails, before he returns? Well, that means the ER, and having the wrong kind of tube (as in, whatever ER has on hand). So, we just keep thinking positively that this will not happen.

    Thank you all so much for your prayers, love, support, and encouragement.

    You are all in our prayers ~

    Love & Light,



    Rose
    Last edited by Earth Mother 2 Angels; 05-27-2018 at 04:32 PM.
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  5. #83
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    ((((((Hugs to All)))))) ~

    Jonís sleeping pattern has been all over the map. First, he was sleeping 11-12 hours/day, with a few hours in between. The past few days, he starts trying to go to sleep about 1 a.m., but he isnít able to finally settle down to sleep until 11 a.m.

    Iíve been getting to bed about 4:30 a.m., when Jim is awake and able to spell me for a few hours.

    This morning, at 3 a.m., we discovered that Jonís urine output was low, and then we discovered that his bed was soaked and swimming in pee. Jonís catheter had slid way out, which is why he was leaking. So, I had to reinsert the cath, before we turned him. We also irrigated his cath, with no return.

    A flooded bed means turning Jon, cleaning the mattress cover with vinegar and drying it, new sheet, underpad, wound care pads, bathing.

    Jim decided that heíd try to turn Jon using his bottom sheet, which was sopping wet. That was the wrong choice, and we paid for it. Jim couldnít hold Jon on his side so I could do all the tasks. Jon was uncomfortable and feeling insecure, Jim was straining, and my back was screaming.

    Then, Jim tried to turn Jon the opposite way, again using the bottom sheet, and I couldnít get the wet sheet out from under him, nor pull through the clean sheet. In frustration, I said to Jim that he had to turn Jon the traditional way, pulling him over by his body. While not nearly as easy as when John turns Jon, we did it.

    All 3 of us were in pain and worn out. We had used the last clean sheet, so I immediately took out the laundry and started a load. At 4 a.m.

    After Jim sent me to bed, he decided to irrigate again, since Jon wasnít producing urine. He was successful and got 200 cc of urine, after clearing a blockage. He came upstairs to tell me that heíd done this and that Jon was peeing again.

    I got about 2 hours of sleep. When I got up, Jimís back was extremely painful, and heíd taken 20 mg Prednisone, which did work thankfully. Jon finally fell asleep at 10:45, as did Jim. So I used that time to order groceries through Instacart.

    I think I may have figured out a potential cause for Jonís sleep issues:

    The pharmacy has changed manufacturers for his three seizure meds. Last month, he had several different generic brands, none of which are the brands heís been taking for decades. I can tell a difference in these meds, which are liquid to go through the Gtube. They are thinner, less viscous, and have a different aroma.

    I called our pharmacist, and she told me that the manufacturers for two of Jonís meds have discontinued making the meds. No longer available. So, we had to go through the options, and heís had so many replacements, I donít know which one is which.

    Jon takes Depakote, Dilantin and Phenobarbitol, three very old meds. There is probably no profit in them, since newer meds are being prescribed. So the drugs have been relegated to lesser manufacturers. And I wonder where these drugs are made and what the oversight is for quality.

    So, now itís a crap shoot, and we take whatever we can get and watch Jon go through agonizing sleep disorders every night, with one hand in reach of the phone to call 911, if he begins to seize.

    Jonís nurse will be here tomorrow to change his catheter. He has ONE catheter left (he uses a special catheter with a silver gel coating to prevent infection). She texted me today that the caths have been on back order for weeks. This is the only catheter that has worked for Jon since 2011.

    Weíre all incredibly tired, frustrated and concerned about how these changes will affect Jon and our ability to care for him. And right now, weíre praying that Jon will fall asleep earlier tonight/morning, so that heís awake for his nurse tomorrow. He only slept for 6 hours today, and he woke up 3 hours earlier than he has been. So, weíre hopeful. Something has to go right.

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  7. #84
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    I bet you are "incredibly frustrated"! It is a very frustrating situation. I feel the tired and aching body, too, Rose.

    I am hoping the nurse brings a couple of those silver coated caths.
    ANN
    There comes a time when silence is betrayal.- MLK

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  9. #85
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    I forget these meds come from manufactures....yikes! Prayers the medications work and Jon can sleep!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  11. #86
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    ((((((Hugs to All)))))) ~

    Thank you ANN and funnylegs4!

    Jon's nurse arrived late this afternoon, because she was given a new patient requiring a full evaluation and recertification. We feel so bad for her, as she is just swamped. Since the new director took over, nurses are quitting right and left. The agency needs to get a clue fast, or they won't have nurses to care for their patients.

    She told us that the agency's supply coordinator apologized to her for not having the catheters. He said he was trying different suppliers, but once again, the new director has limits on which suppliers can be used. So, we used our last catheter today, praying together that it would last through the month.

    We do have the same cath in a smaller and larger size, neither of which worked well for Jon. I hope we don't have to go there next month. I tried to order the caths on line, but I need a doctor's script for them. That may be my next call.

    The trache change went smoothly, and Jon's SATS are 97!

    Jon's nurse asked if she could be here when Jon's GI visits to change Jon's GTube. Of course! She said she's never seen a G Tube change, and she also just wants to see our GI, because she loves him, like we do. He is the sweetest, gentlest, kindest person. He even thanks us! He says it's nice to get away from the hospital and office, in the fresh air and sunshine. He always parks at the end of our cul de sac or around the corner, because he likes to walk! I don't know his age, but I'm guessing he's near 60, and like our nurse, we fear their retirement!

    It was lights out for Jon at 2:00 this morning, and he finally fell asleep at 5:15. Jim relieved me at 3:30. I don't seem to be able to sleep longer than 3 hours anymore, and that sucks. Sometimes I take a 20 minute nap, when I'm sitting with Jon at night. But I have to do something for him every hour, so I don't get comfortable, where I might sleep longer.

    Jon woke up at 1:15 this afternoon, in time for me to give him a bath, as well as pull together all of the supplies for the the cath and trache changes, get the place set up for the procedures, like it's a clinic. Because, it is. We were expecting Jon's nurse by 3:00, but because she had the added patient, she moved the time to 4:30. That gave me time to do more cleaning and take out all of the trash and the bins for pick up tomorrow.

    She was here for an 1 1/2 hours, and I was on my feet the entire time. I assist her, as does Jim, when he's up to it. He did help today, but I took the lead role.

    And I am T I R E D.

    I have at least another 8 hours on my shift, depending upon how Jim feels and when he wakes up.

    I need a youth serum.

    There is nothing that I can do about Jon's Depakote and Dilantin. The companies aren't producing them anymore. I could write them an impassioned letter, but I doubt that that would change their decision.

    You know what else makes me T I R E D?

    This stuff.

    Fighting for nearly 50 years for everything my children need. Every 2 months, I spend days and hours on the phone between the pharmacy and the doctor's office to get Jon's Phenobarbitol script filled. He's been on Phenobarb since his first seizure at the age of 2 years. But Pheno is now a controlled substance and requires a new script for refills.

    We're running out of Optifoam pads. What do I do? I have to call the doctor to get a script for more than one box a month. Wait for Medi-Cal to authorize it, and then get the extra box. Ten pads cost $153. Yeah.

    It's not enough that I'm caring for my husband with Stage IV cancer, and my son with multiple medical issues, but the road to providing that care has to be cluttered with boulders and jungles and pot holes.

    In 1992, when I was still a single Mom, Jon, Michael and I were featured in an article in a major newspaper. The local CBS affiliate asked to visit us and interview me. Jon climbed onto the stair chair, and as I walked up with him, we stopped. The interviewer asked me whether I thought the current issue would be resolved soon (it was about IHSS), and I replied, "I've been fighting for my children for 22 years, and nothing has changed. Our programs are the first ones on the budget chopping blocks, and we have to beg them to spare us. To me, it feels like it is never going to change, until the voters and taxpayers understand the people their taxes support. That's why you're here, and we are still fighting."

    All these years later, and I'm still fighting.

    What's wrong with this picture?

    Yep. I am mighty T I R E D.

    Thank you all for your prayers, love, support, understanding, encouragement, and for being here. I love you.

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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  13. #87

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    Rose, My DD is on an ADHD med, which is also a controlled substance. She sees the MD every 3 months and while there he writes 3 separate 30 day pre-dated scripts that we submit one at a time as needed. Yes, it is a hassle, but only 4 times a year. Would that be possible for you to do?

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    ((((((Hugs to All)))))) ~

    callyflower ~

    Jon hasn't seen/had an appointment with our PCP since 2008. We communicate through health portal emails. I also talk with his assistant on the phone every month about these meds.

    I don't know what arrangement he has to allow this, and I don't ask. He receives the monthly assessment of Jon from Jon's home health nurse, and she is considered his eyes and ears. We had an NP a few years ago, who was supposed to be the liaison, but she only visited once, and now she's the NP in the Cancer Center, who asked Jim, "Are you still causing trouble?" after he left Dr. P for Dr. K.

    Once a year, Jon is seen by his GI doc, who changes his tube in our home. He is in the same practice and hospital affiliation as our PCP, so he is serving as Jon's contact doctor for the group now. Our PCP offered to make home visits, but the big wigs shut him down.

    I don't know whether our PCP would be comfortable writing scripts in advance. As it is, Jon receives a 2 month supply of Pheno. It's just that at renewal time, there is always communication breakdown between the pharmacy and the doctor's office, because the doctor's office has an answering service, not on site of the doctor's office. They are PIA gatekeepers. Grrr ...

    Jon hasn't been to see our doctor because:

    2009, 40 days ICU, 5" tunnel wound in left buttock, took a year to heal with daily wound care.

    2010, 10 days in ICU prior to Christmas.

    2011, one month after discharge, back in ICU for 45 days. Wound care. Formula feeding problems.

    2012, major tonic clonic, coded in ER, intubated, 5 days ICU, 5 days Step Down.

    2013 contractures, fluid retention, deterioration.

    Jon isn't able to be in his wheelchair now, as it would be painful for him for any length of time. To go to the doctor, he has to be on a gurney in an ambulance. That is horribly painful for him. Until last year, when our doc moved to a new large facility, access to the 2nd floor via outdoor elevator made seeing the doctor very difficult. We couldn't get a gurney in that elevator. They must have done that at some point, if paramedics were called. But Jon's w/c just barely squeezed into the elevator, upright, and only one of us could go down with him.

    There are "house call" doctors, but they are a group, and you can't rely on having the same doctor every time. They are also not hospital affiliated. I do not want to leave our doc, because we love him, and he loves us. We were among his first patients in 2001, when he took over our former doctor's patients. He was just starting; fresh faced, eager, unaware of the pitfalls of the System.

    MEANWHILE ...

    Jon hasn't slept for 30 hours. He's been close, but just can't go there. We've tried lights out, music on the stereo, no music, TV back on, lights out again.

    We don't want to give him Ativan, because it always messes him up. That's why his current bottle of Ativan is essentially full, and it was filled in 2016.

    So, I emailed our doc through the health portal to ask for a new script. We need to have it on hand as a rescue drug, if he has a tonic clonic.

    He's peeing and pooping like a racehorse ~ I'm thinking Justify may be a Triple Crown Winner, but he'd be impressed with Jon's output.

    I went to bed at 4 this morning, and when I got up at 7:30, Jim was in bed trying to rest. Jon was still awake. Jim was only able to nap for an hour at time, because every hour, he had to get up to go pee.

    Maybe the humidifier put out too much moisture!

    I did 4 loads of laundry, sat with Jon, but then he'd be distracted by my presence, so I'd leave him and hover outside his room, peeking in on him every 20 minutes. Then he reaches out his hand to me and asks me for a movie.

    I think I'll give him an extra phenobarbitol to see if that has any effect. Probably not, since he's been on it for 46 years.

    I wish that I had a magic wand filled with sleep dust!

    Thank you for your suggestion, callyflower. I will ask the doctor's assistant about getting pre-dated scripts.

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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    Rose, I am aware that Jon doesn't travel unless he's in a life-threatening situation. I was just wondering about the pre-dating of prescriptions. It is legal here in TX for docs to write 3 mos worth.

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    Exclamation Wake and Quake

    ((((((Hugs to All)))))) ~

    callyflower ~ Oops! Sorry for too much information.

    WAKE AND QUAKE

    Jon was awake for a total of 43 hours! He fell asleep at 8 this morning.

    I returned to bed to rest my back with the heating pad, while Jim tried to get some sleep. I said a prayer of thanks that Jon was finally asleep. For some reason, I also thought, ďI hope we donít have an earthquake today.Ē

    At 8:20, BOOM! A 2.7 quake hit!

    We are a mile from the epicenter, as it occurred on the same fault line as the 5.1 quake we had in 2014, which caused extensive damage to our home, as well as our neighborsí properties. Chimneys and brick fences fell over. Water mains broke, causing flooding on our street. We had hundreds of aftershocks for weeks.

    Because there was a precursor shock (foreshock) prior to the 5.1 quake in 2014, I laid in bed praying this wasnít a repeat of that event. So far, no more movement, thankfully. That doesnít mean that it wasnít a foreshock, because it can take days to years for the major quake to occur.

    Jim and Jon were asleep, so they didnít feel the quake. It was was a quick jolt, maybe 3-4 seconds. Initially, I thought, ďNo, thatís not possible! I must be half awake/dreaming.Ē But I checked the USGS earthquake map, and there it is. Maybe I should offer to consult for the USGS as an earthquake predictor!

    This afternoon, I heard a hawk calling and looked out the window to see a sparrow hawk bathing in Michaelís waterfall. She was there for nearly 20 minutes, and Jim and I enjoyed watching her. It is incredible that hawks appear during stressful times. I know that they are Michaelís messengers to remind us that weíre not alone.

    Thatís our relaxing weekend report.

    Thank you all for your continuing prayers, love, and support.

    Love & Light,



    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful Dad.

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