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Thread: Jim's Journey

  1. #171
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    Hugs to all

    On iPad, lost internet connection on computer. Modem lights are green except the last light, which is off.

    Nancy here today to draw blood. Jim peed a lot of blood while she was here with a clot. She called Dr. K and he added blood clotting tests to the draw.

    He weighs 170lbs today, and that must be fluid. Vitals are fine. He took a TC this afternoon as tumor pain was Creeping up. Sleeping now. Praying we do not have to go to the hospital.

    I will have to call Spectrum about the internet connection but I do not want to wake Jim. So glad we have the iPad and am learning how to use it as I go. Have the dummies for seniors book to help me.

    If we have to go to hospital, I will call an ambulance and follow in the van. John is playing golf, and I need to be able to come home to sleep. I was awake at 3 am and up at 4 to give Jim breathing treatment. Mega tired and stressed.

    Thank you for your love and prayers.

    Love and Light,



    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  3. #172
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    ((((((Hugs to All)))))) ~

    I just spoke to a very nice Spectrum tech, and as we were speaking, by magic, the internet connection came on! She didn't do anything!

    She said that our cables outside and inside need to be upgraded to prevent intermittent interruptions in service. That means that the cable tech would have to climb up into our attic via the office closet. Jim's too vulnerable right now for us to have this done.

    He slept this afternoon, which he does need, since he doesn't sleep much at night, if at all. When he woke up, he had a pee, this time only a trace of blood. He's alert and not in pain.

    Jim's appetite is lessened by the fluid in his abdomen. He ate his breakfast cereal feast in two phases, and ate a large slice of leftover pizza (frozen). Now he just wants soup and crackers.

    No call back on the blood work results yet. Of course, it's the weekend, and that's when our family loves to have a crisis. That and holidays. We're famous for both.

    Thank you all for your love, prayers and continuing support. Our prayers are with you and your loved ones.

    Love & Light,



    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  5. #173
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    Rose, always thinking about you and Jim and prayers for you both. I'm very impressed at your ipad usage! New technology can be so frustrating. I have a very old phone and I'm scared to get a new one for fear of learning all over again how to use it. I'm lucky my son is great with all this stuff (my husband too but he does it at work all day and doesn't have the patience at home with it). As for the ipad, Kathleen has one, when it doesn't link up to wifi sometimes turning it off and rebooting helps. Also check your setting and make sure you didn't inadvertently turn off wifi. Hopeing to hear some good news soon on all the testing. I hope you have a good weekend with no complications (human or technology). Oh and Love the Jerry Seinfeld riding in cars show!!!! SOOOOO funny!
    Mary Grace

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  7. #174
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    ((((((Mary Grace)))))) ~

    It's always wonderful to see a post from you. I pray that all is going well for you, Kathleen and your family. Are the leaves turning and the weather cooling?

    I just have to roll up my sleeves and dig in on the iPad. If it becomes my only source for internet connection, I need to know how to navigate it. The only way to do that is with practice.

    Our cell phone is also an antique, but we're not going to trade up to an iPhone. We don't need it now that we have the iPad, and it's an expense we don't need either.

    I was musing to Jim last night how old our stuff is, like our van is 21 years old, our computer is 6 years old, our house is 42 years old, our a/c condenser is 18 years old, and we have our original furnace with a new motor. I guess we could say that we've made wise purchases for these things to last as long as they have. But we see no reason to replace things, unless they break or stop working.

    We started watching Seinfeld's "coffee and cars" show, when it first aired on Crackle. It was our half hour a day break for laughter. We had a routine, which allowed us a break for that sole purpose. We watched the boxed set of "WKRP in Cincinnati," one episode/day, then "Larry Sanders," and "The Garry Shandling Show," with the great genius, Garry Shandling.

    I wanted to bring back that tradition with Jim, which was one of the main reasons I wanted him to have an iPad or laptop, so we could watch Seinfeld together. Unfortunately, Jim is so wiped out, he can barely stay awake, except late at night, when I need to be sleeping.

    He watches golf, men's, women's, seniors, any golf. TMC movies, even if they are absurdly poor; the other day it was ancient civilizations movies all day. They were so corny and over the top. We did laugh about that, but he kept watching them. Of course, Jonathan has thousands of videos. Jim also watches soccer and football. He loves the weather channel too.

    Wait ... why did I get this iPad for him?

    Blood in Urine Update

    Last night, Jim had several pees with no blood into this morning. His first pee after his nap, he had a trace of blood. In addition to bleeding, having low WBC/RBC , cancer, and a giant gut, he is taking THC and Tylenol with Codeine. This afternoon, he said he had no pain, but he felt "thick headed." His appetite is waning, because of his gut.

    I feel that his gut needs to be drained, so I'm sending Dr. K an email and will call him on Monday, by which time, he should have seen Jim's blood work results. I'm prepared for him to tell me to bring Jim into the hospital, and I'll ask him for a direct admit, so Jim doesn't have to wait in ER. I hope that he will be able to get a direct admit.

    If cancer has metastasized to his bladder and/or colon, then radiation treatment on his lung tumor will be off the table probably. This will be very disappointing and saddening for us, as we left the radiation simulation last Monday with hopefulness.

    But, we can't argue with his symptoms.

    So, we just have to keep following this journey with our love, faith, and unity in tact.

    Today, it is 6 months since Jonathan passed.

    My heart is heavy.

    Thank you for your love, prayers, and continuing support. We love you and pray for all of you and your loved ones.

    Love & Light,



    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  9. #175
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    Default Blood Test Results

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

    When I finished my last post, I checked our email. I saw the notice for a health update on Jim's portal. Took a few deep breaths and logged in.

    The results show improvement!

    Glucose: 106 down from 142

    WBC: 2.0 up from 1.1

    RBC: 3.08 up from 2.91

    Hemoglobin: 8.5 up from 7.6 (out of range for needing transfusion)

    Hematocrit: 27.61 up from 24

    Platelets: 54 down from 81

    Both liver tests are elevated from last time. I can't interpret the iron findings. I'll do some research.

    Dr. K's comment was "platelets not too bad, will refer to urologist to look into bladder."

    He is a man of few words! I hope we have some new urologists, since 2010/11. The ones, who treated Jon in ICU were not very compassionate. They basically gave up on him, because he wasn't a candidate for most of the testing. Still, Jonathan managed to live 9 more years, without their assistance.

    I'm sure that Jim will be treated differently. Unless they look at all medically fragile patients as hopeless.

    To me, these are surprisingly good results. I think Jim will feel the same way, when he wakes up.

    As we used to say in the old days at Disneyland, "This is definitely an E Ticket ride."

    The Matterhorn was an E Ticket ride, and in those days, it was pretty frightening, with lots of climbing and falling, curves and sharp turns.

    I gave up riding roller coasters, when my life became one.

    Thank you all for your love, prayers and friendship.

    Love & Light,



    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  11. #176
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    My dearest Rose,
    I am sorry that I've been out of touch - we have been up north at the cottage where the internet is very slow so I stay off the computer most of the time. There's no cell signal there either. This is good news about the blood results, but I wish Jim was feeling better! I does sound like he would be feeling better with less fluid on board. I hope they can drain it. And it is so worrying about the blood clot (even if the evidence of blood is gone now). I can FEEL your exhaustion and stress in your written words, Rose. I am so sorry that you are getting so little rest (who could rest with the worry even if there weren't so many things to do?!).
    6343b29128b3ff25faf7a79014a449a7.jpg
    I hope you are able to get Dr. K's attention very quickly and that he can think of some treatment to give Jim back his appetite and also help him get some good rest (you too!!!!).
    Sending much love and healing prayers for Jim and loving prayers for you, Rose,
    Donna xo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  13. #177
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    PS: I am so glad that you have your iPad if/when your signals fails!
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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  15. #178
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    ((((((Donna)))))) ~

    Please do not apologize to me for having a respite at your cottage. It's wonderful that you don't have internet access. You're there to rest and revel in the peace and glory of nature. If I had a cottage, I might become a hermit and never be heard from again! Probably not, because I'm compelled to be doing something all of the time. I'm not proficient at relaxing for some reason.

    Thank you for the beautiful prayer. I'm going to print it out and put it on the fridge. We appreciate the blessings of every prayer sent forth for us in ways I couldn't even begin to describe. Thank you.

    APPOINTMENTS

    Dr. K replied to my email this afternoon: "You make a convincing argument. I ordered paracentesis (draining the gut)." Thank you Dr. K for trusting my instinct and experience.

    I told him that our son had lymphedema and fluid retention and that we know what that does to the respiratory system. He couldn't argue with that, as that is what Jon dealt with for the last 10 years of his life. I also mentioned that Dr. S, the rad onc, checked Jim's gut and recommended draining. That most likely helped too.

    I concluded my email asking him if he agrees and if not to explain why. I'm open to anything that might be bad for Jim to have this done, and I won't push for it then. But he agreed with me. So that's the next appointment I will make tomorrow.

    The scheduler for Dr. S, the rad onc, called late this afternoon. I'm guessing Jim's mold is in, and they want to do a fitting. I didn't call them back, because Jim has to have the drainage first, before he can do anything else.

    THE CAR

    Likewise, I have to forestall ordering our RAV4, because Jim's appointments are urgent and necessary. I know that the car is important, of course, but it will take a lot of time for me to go through the process to order it and get it delivered, when that time needs to be devoted to Jim and coordinating his medical appointments.

    I texted John and he's available every day this week, except Friday. So we'll aim for Wednesday or Thursday for the draining, and schedule the appointment for mold testing with Dr. S for next week. Jim will need time to recover from the drainage. And going to two places in one week will do him in.

    JIM'S CONDITION

    No further blood in his urine, and BMs are normalizing. Unfortunately his bladder and bowels are most active at night, so he gets very little sleep. Hence, sleeping on and off all day.

    In a way, this makes sense with Jim, as he's been a night owl since I've known him. Where I fizzle out mid-evening, Jim always stayed up late to watch TV. So, he naturally took over the night shift, when Michael's condition began to decline, giving me time to sleep and deal with the days' activities and running the household and getting the boys' supplies and other needs met. We continued shift work, until Jim became too ill to stay up at night with Jonathan, in January this year.

    Of course, when our boys were hospitalized, one of us would stay home, and one of us would be at the hospital. Jim took the night shift.

    Jim is not complaining of any pain, and he hasn't needed a Tylenol with Codeine for 2 days. The THC does make him drowsy, and he does have 10 mg of Prednisone on board daily for pain.

    Breathing treatments and rescue with the inhaler have increased with the Ascites. I explained that to Dr. K in my email. So, it is urgent that this is addressed, and I pray that the draining will bring Jim relief.

    I ordered him 4 pairs of flannel pjs, and 4 flannel shirts to wear to his treatments, since he only has 2 flannel shirts, and I'll be doing laundry every day for 3 weeks, otherwise. Jim is cold all of the time, regardless of the weather. With his gut expansion, his existing shirts and pjs are too small. So, now he will have two wardrobes depending upon his girth. He also has a week's worth of sweatpants.

    He told me today that I should stop buying so much for him. I replied, "You have to have comfortable clothes to wear every day for 3 weeks. Now you do. You're always cold. Now, you won't be. Think of it this way: Christmas is early this year."

    I also feel that the Ascites is affecting Jim's memory, with less O2 getting to his brain. He asked me this morning, "Is it Tuesday?" Nope, it's Monday. Then, I asked him what we watched on TV all day yesterday. He said, "Golf?" No, football, because it was Sunday. Then I went over highlights of the games. He remembered.

    An hour later, Jim asked me if it is Tuesday. Nope. Etc.

    Even though he has a large digital clock displaying the time, date, day, year, and temperature right in front of him, he can't remember what time it is. He woke up at 7 a.m. today and told me that he thought is was 5:00 in the evening.

    I'm going to start greeting him with the day and time now. Reminding him repeatedly, so that it reduces (I hope) his confusion.

    So far, he does fairly well keeping track of his meds, but I'm on top of it, because he's slipped a few times with no memory of whether he did or didn't take a certain med. I'm also charting now.

    When I suggested watching something on Netflix on the iPad today, Jim was content to keep watching the DYI network shows about renovating cabins in the Maine woods. He periodically switched to his new favorite channel, Motor Trends.

    I retreated to the kitchen and made a big batch of spaghetti sauce, which I hope Jim will eat. He had a small bowl of cereal with his fruits today. He's not eating enough.

    That's our story for now. I'll be on the phone tomorrow making appointments.

    Thank you, Donna, and we pray for you, Jim, Nick, Natalie, Daisy, and your entire family and are grateful for your enduring friendship.

    Our love and prayers to all ~

    Love & Light,



    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  17. #179
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    Default Appointments, Car, and Other Stuff

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

    Our home has a bakery aroma this afternoon. I turned 4 over ripe bananas into muffins with walnuts and blueberries. I decided since we have a ton of last night's spaghetti sauce, I would put my culinary efforts into baking.

    Jim had another long night visiting the toilet, so he's been sleeping on and off all day. He takes his Lasix about 1:00 p.m., so I don't know why he's up all night. We should try taking it in the morning, but that's when he takes his steroids and CBD and THC.

    He's been napping this afternoon, so soundly that he didn't even wake up when the gardeners arrived. I so wanted our backyard cleaned up today, as we have a ton of leaves and debris from last Friday's gusty Santa Ana winds. I didn't want to disturb Jim, so I didn't go out to request the clean up.

    APPOINTMENTS

    I called the rad onc office this morning, and the appointment offered was for 10:30 a.m. Thursday, 10/17. Nope. He has to have his gut drained first. So, I went through the explanation that both Dr. S and Dr. K agree that Jim needs paracentesis prior to his fitting of the mold for treatment.

    She found an opening on Tues, 10/22 at 2:00 p.m.

    We need afternoon appointments, because Jim has to sleep in the morning, and it takes time to get him (and myself) ready. Also that's the time that John finishes his work day.

    I then called Dr. K's office to find out the number for the radiology department, where Jim will have his gut drained. A few minutes later, radiology called me.

    An appointment opening was available next Tuesday, so I had to explain about Jim's rad onc appointment. She managed to squeeze him in this Thursday at 2:00. Squeezing in means we'll have to wait, and it could take 2 hours. I just hope that they have a comfortable place for Jim to sit or lay down, while we wait.

    This appointment will be at the hospital, not the medical offices.

    John is on board to transport us to both appointments.

    THE CAR

    Even if I could have the car delivered over the weekend, I don't want to do that. John and his wife will be out of town, and I would like for John to be present, when the car is delivered.

    I would like John to see the car, make sure that it's the right car, make sure that everything is done on the up and up, because I haven't bought a car in 21 years. It also always helps when a man is with me, because then I'm not viewed as a little old lady with no awareness. Sometimes, like the AAA guys, who helped us with our van this year, they see me and feel sorry for me, so are nice and extra helpful. Sometimes, they see me as a target for more money.

    John has also agreed to teach me how to drive it. So, maybe next week, after Jim's fitting, we can get it ordered and delivered. I will discuss this with John. It is to his benefit if we get this car, since we won't have to depend upon him for transportation to all of these appointments.

    OTHER STUFF TO DO

    I started washing Jim's new shirts today, and I discovered they are fleece not flannel! There's a fact I missed when I was scouring over them on the internet. Well, they are soft and warm, and that's what he needs. And he likes them. If he continues to let his beard grow, which I doubt he will, he'll look like a Mountain Man in his fleece shirts and sweat pants.

    I need to cut his hair, but he sleeps so much during the day, no time for it. My hair is just absurdly long and scraggly, and John's niece would gladly come over someday to cut it for me, rather than me go to her salon. But what day? Jim sleeps all the time, and when he's awake, I'm cleaning, feeding, laundry, etc. Or we're off to appointments.

    Our rusted gutters are an eyesore, and I'm surprised we haven't received a notice from the HOA about them. A friend referred me to her trusted contractor, but again, what day do I schedule that for? And, again, I need John here, because I know nothing about gutters. Jim isn't well enough to participate in these things, or he would be up and out there making sure everything was done right and that our car was perfect upon delivery.

    And never mind about my teeth and eyes. I've been wearing the same glasses for 16 years. Right after I got them, Jonathan's health declined, and we were in and out of the hospital, and there wasn't any time for me to take care of my eyes. I also have gone through too many years without seeing our dentist for the last 20 years. And when I do, I always need a lot of work and spend a lot of money. Whenever that opportunity arises for me, I'm sure the same will be true.

    I don't want to be away from Jim for more than a half hour. Eye and dental appointments take 2-3 hours, including driving time.

    So, our house and I have rusty gutters, scratched and dirty windows, cracks and signs of aging and neglect, and an unkempt "do."

    And, we're going to stay that way for as long as Jim needs us.

    Thank you all for your love, prayers, kindness, compassion and sweet support. We love you and pray for you and your loved ones.

    Love & Light,



    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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  19. #180
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    Thumbs up Jim's Gut Drainage Adventure

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

    John arrived early today, brought in the box of oranges, showed us how to use the wireless headphones with our iPad, and carried the satchel of necessary items (briefs, cleaning wipes, the iPad, etc.), which is quite heavy, at least for me. I did lug it around quite a bit today.

    We arrived early and waited for admitting to tag Jim. Every time we go to the hospital or the medical offices, no matter where we are in the building, someone recognizes Jim! Big smiles, so happy to see him, cheerful, joking with him. One of the admitting representatives knows Jim, but she didn’t admit him today.

    The young man, who did admit Jim, brought in a wheelchair for him, and he rolled Jim the full distance to the radiation lab. While we waited, we looked at photos of the gorgeous place, where John is taking his wife as a surprise for her birthday this weekend. She doesn’t know the destination, but she will be very happy, when they arrive, I know. We wished we could join them.

    We only waited for about 30 minutes, before a lovely nurse came out to roll Jim into the procedure room. Jim asked if I could come with him, and she said yes, but I’d have to leave during the procedure.

    Fully clothed, he got up on the cot, and she made him comfy with pillows and warm blankets. His BP was 107/60, not unusual for him.

    An ultrasound tech came in and began the ultrasound of Jim’s belly to identify the correct location for the needle insertion. She was also very sweet.

    We told both of them about Jonathan and Michael, and they were obviously moved and offered their condolences to us.

    The doctor entered, a very nice gentleman, explained the procedure to us, asked us if we had any questions, and we didn’t, since Jim has had this done before.

    As the ultrasound tech ushered me out, she told me that she’d come out to the waiting room to get me once the draining was in progress, so I could be with Jim.

    I think it’s apparent to everyone, who meets us, how much we love and are devoted to each other. I am used to being with our boys through many of their procedures (I’ve even helped an ER doctor stitch up a wound on Jonathan). But, it’s different with a husband, I suppose.

    Of course, they’ve seen his chart, and they know his diagnosis, so perhaps, they are treating us with special care.

    Since Jim had this drainage in April, they have a brand new machine, which sucks the fluid out of the abdomen, relieving the physician of having to drain it.

    The ultrasound tech lifted up the tubing from Jim to the machine, so I could duck under it and sit on the stool beside him. I watched the light yellow fluid chugging through the tubing. I gave thanks for every drop that was being released from his swollen belly.

    The grand total of fluid drained: 2.5 liters.

    As we were preparing to leave, I learned that I wasn’t supposed to be allowed back into Jim’s room during the procedure, but an exception was made for us. Tick a lock.

    Jim felt immediate relief.

    The ultrasound tech got his wheelchair to roll him out to the lobby. On the way, Jim asked if she would stop and make a detour to an alcove with a Memorial Wall.

    “This is where Michael’s name is, honey,” Jim said as we neared the wall. Jim pointed upwards, and there was Michael’s name.

    “We need to have Jonathan’s name up there. I will do that very soon,” I said, tears welling.

    Michael’s name was on a wall by the North Elevators, while Jon was hospitalized from 2004-2012. But renovations required removal of the wall there, so it was relocated into this very peaceful, sacred space.

    The ultrasound tech just looked at us with an expression of sorrow and compassion. She said, “That is so special.”

    John picked us up, came in to help us power up the earbuds, and told us he’d send photos from the weekend surprise getaway.

    I often think that if Jonathan and Michael had not had disabilities, they, their wives, our grandchildren, would be transporting us now. So, God sent a third son, a third brother, named John. And just like Jonathan and Michael, when I'd think I couldn’t love them more, every day, I love John more.

    When I told him today that getting the RAV4 would relieve him of transporting us for 3 weeks, he said, “That is not a problem for me. I want you to have a car for yourselves, but it’s not a problem for me. I’m here for you no matter what.”

    When I asked him if he would be here, when the RAV4 is delivered, he said, “Absolutely. I understand, and I’ll be happy to be here. I know it’s a lot for you to take in, and I know Jim isn’t up to dealing with it. I’m looking forward to it.”

    After eating only 3/4 of his breakfast cereal feast at 10 this morning, Jim ate half of a 2 egg omelet with a sprinkle of sharp cheddar cheese, 3 T of Amy’s veggie baked beans, 1 1/2 slices of toast, and 12 Alexia potato puffs for dinner. This is what he wanted, and he ate it with vigor.

    We are praying that Jim will spend less time on the toilet, and he will efficiently excrete his urine and stool. He could feel the pressure off of his chest, which is wonderful. Now, he is sleeping, which he needs desperately, after being awake all night and sleeping 4 hours this morning. This was a big day for him, and his body has had trauma.

    He loves his cozy flannel pjs and his fleece shirts and sweatpants. He felt warm and comfortable all night and day.

    My prayers for him now are for healing at the injection site, no infection, plenty of rest and full recovery, and blessed relief continuing. Breath, appetite, energy, comfort.

    We thank you for your prayers, love, enduring friendship and walking beside us on our journey. We pray for you and your loved ones every day.

    Love & Light,



    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

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