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Thread: Independence Day: July CN Check In

  1. #51
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Today was a good day! (mostly!) Caitlin is back to herself and showing her personality...very talkative and self-advocating a LOT! I think I would be though too if I were stuck in bed all day. My Dad stopped by yesterday with a new movie for Caitlin and Brian's parents stopped by tonight with a stack of movies. Hopefully those will help keep her mind busy. I think she is getting bored of the Disney Channel. I know I am! LOL!

    Auntie Ann (Brian's sister) came over today for a bit too. That helped tire Caitlin out. She actually fell asleep after about an hour into the visit. But that is ok. Rest is good!

    I think I like the glue for the surgical site, the only bad is there is a few spots where it is weeping yet and today when I changed the dressing it was a LOT of blood. I was a little concerned and called the number on the sheet and spoke with the ortho resident oncall. He reassured me but did say to give the office a call tomorrow since C's surgeon has clinic and can double check that all is well. I did post a pic to facebook and some nurse friends answered with their opinion too which made me feel better about it. One said that it is better for it to come out than have it turn into a hematoma and that it appeared to be old blood, not new (which would be bad). The light spot picture is Saturday and the heavy is today: 8 August 013.jpg8 August 099.jpg Gross, eh? Anyway, I am not sure how the glue works...it is amazing though, it already looks like an old scar (where it isn't weeping!). There isn't anything really visible on the outside like you may picture in your mind how it looks to have Elmer's glue dry on your hand or something. It must absorb into the skin is my guess. I like that it looks really smooth and I hope in time it fades. It is rather purple right now, but I have seen pictures of other people's scars and they do turn whiter with time. We are to keep it covered and out of the sun for a year after the surgery. Pretty easy since she sits in her wheelchair when outside! :)

    Today, it seems that her back is hurting more than the leg, though she still complains a lot about the leg. I increased the oxy and decided to go up on the for the next few days to control pain and then back off on that and go more for the valium. I was afraid to run out of the valium since we only had 100 mL of each to work with. They say the valium is better later on for muscle spasms. It really hurts her yet when I have to lift her out of bed and into the chair and I don't want to undertreat her pain. I remember how I felt after my tonsillectomy when I had to do only Tylenol during the day to function in life with a throat full of razor blades! Ugh! Today is only day 9 after surgery and like I said to my Dad, she won't be drug seeking in the ER when I am in control of what she is getting! :)

    It all reminds me of having a new baby...up every 3 hours around the clock! But I am trying to make her nights boring and the days more interesting....like we did when we had babies! But I made sure to get to bed at 10pm last night so I didn't feel too wiped out. Usually I just get about 6 hrs anyway so that worked out so that I had enough sleep. Now I just have to work on leaving the junk food alone! The boys brought home tons of snack food from their trip, I joked that I won't need to buy snacks the rest of the month. I had shopped for their trip, but Grandpa also brought a ton of snacks so most of what I sent came home. Brian's Dad drove them all up north and went along since Brian still has restrictions on his license yet.

    I plan to go grocery shopping tomorrow after her 4am waking (the store I go to is 24hrs) so hope I can be brave a pick up a hunk of kale and give it a whirl! LOL! In the meantime, I did enjoy this, while not a smoothie, it was pretty tasty! 8 August 031.jpg I had Brian's Mom come to our house and stay with Caitlin while Brian & I took the boys to his work picnic. They go all out for this every year...I felt bad that Caitlin couldn't go since there is actually a lot she can do at it. They have karaoke on the stage in the pavilion at the park it is at every year and we (Caitlin & I) always go up and make a fool of ourselves. :) It is hard since it is an old park and the stage is not wheelchair accessible so I would always carry her up there. This year when I looked, I was like, oh bummer!....I forgot they had remodeled the stage and it is all new, bigger, cement (instead of wood) and has a really nice cement wheelchair ramp that goes up to it. I would have been able to wheel her right up there. But there will be next year! They also go all out on the food and games and horse drawn carriage rides thru the park, petting zoo, camel rides (oh yeah!). It is just awesome! We stayed for just about 2 hrs so we got home in time for Caitlin to get her medicine again. 8 August 070.jpg That was the big excitement for the weekend and this week is pretty empty of appointments or activities so we can just hang out at home and rest/recover. My sister's bday is this week, but I told her I would just take her for a pedicure in a few weeks when C is better. She is busy unpacking yet anyway.

    Thanks for all the prayers & well wishes, I am so glad to be on the other side of this surgery now! :)

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  2. #52
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa & Caitlin)))))) ~

    The bleeding must have been startling to discover. It looks like old blood to me too (the darkness and brownish tone) as opposed to "frank" blood, which is bright red and fresh. I wonder whether Caitlin might be experiencing some kind of pressure on the surgical site when in her wheelchair. She is used to being tilted and curved in her chair, and now she's sitting straight. Just a thought ... Any possibility that you might be able to call or email your friend, who is Caitlin's PT for her advice? I'll be anxious to know what Caitlin's surgeon has to say.

    You have to mitigate Caitlin's pain, that's for sure. Your plan sounds very good. Are the warm rice bags helping at all with her leg spasms?

    Thank God for great grandparents bearing gifts of snacks and movies! Most of all, just knowing she is loved so dearly is the best gift for her healing.

    Next year, Caitlin will be feeling great and sitting up tall in the saddle for fun at Brian's work picnic. Sounds like a blast! Where do they find camels in Wisconsin? What a cute picture! I'm so happy that you were able to enjoy that fun time with your boys.

    Be extra brave and pick up a bunch of spinach to go with the kale! It's good for all of us, but especially for Caitlin as she is recalibrating her blood cells. She won't even know it's there. Unless she asks why it's green. You might also consider tossing in protein powder. We use Orgain, which is vegetarian and packed with protein. Chocolate. It's delicious. Jim makes a shake with coconut or almond milk and Orgain. Much tastier than Ensure.

    I'll be praying for the bleeding to subside, and for a good talk with Caitlin's surgeon to reassure you. I'll be praying for good sound sleep for you and Caitlin, and for a relief from pain for her.

    Take super duper good care of yourself, Lisa. You're awesome!

    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.

  3. #53
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Yes, I wasn't expecting to see that much on it! The first change has more of that clear fluid discharge and I only took pictures just because I was hoping to see it decline in amount! Good thing for the pictures though, I did call the office today and ended up send them by email to be looked at. The surgeon is not in this week (just my luck) but I don't really want to drive to Milwaukee anyway. His PA answered my emails and said to increase the amount of changing to 3x/day and send pictures of tonight & tomorrow's change to her. I only have 10 dressings left so I asked for more to be ordered and sent next-day or 2-day shipping. I am hoping by keeping it dry that it resolves on its own....as I think they are hoping too! They reassured me that no question is too dumb to ask, that they don't mess around with the spine kids. I really hope we don't have to go back in though since next week is all the school registration stuff. So glad I bought all their school supplies before the surgery so that is off my plate! I just paid their school fees today online. I love that this is an option. It makes registration day (next week) go a lot faster. They give out schedules, get their school pictures taken and sign up for sport/extracurriculars so it is really hectic...plus I will have 3 kids at the middle school this year!

    I went grocery shopping this morning but I got up later than planned (and was tired) so I forgot to grab kale or spinach! I am good about sticking to the list and should have put them on it! I did buy a can of vanilla protein powder though to mix in her smoothies. It had a lot of vitamins and stuff in it. I just got the brand we used to buy when Brian was doing P90X since it comes in smaller cans. Some of the stuff they have at the store would be a lifetime supply! LOL!

    We met our new next door neighbors yesterday...they came over and introduced themselves and gave us a taco dinner to make since she heard from our across the street neighbors that Caitlin was having a surgery (the across the street ones were picking up our mail/paper for us while we were gone). They really seemed nice and their son is only a year older than Brandon....they were chatting in the driveway after and then went fishing together after supper. Nice to have another friend for him close by! So, not really much else interesting to report, just stayed home all day. Fingers crossed we don't need to go back to the hospital!!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  4. #54
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    Sounds like a wonderful picnic! It's so nice that you have so many caring family members. And neighbors too...The spinach blends up really well in the smoothies (we use a nutri bullet). Kale was a bit bitter. Banana hides just about any other flavor, we always use at least one banana. Sounds like you're in good hands with the hospital contact. Praying that the bleeding subsides and you don't have to go back. I love the glued incisions. Kathleen had one and so did I. You can barely see the scar I'm about 6 months out of surgery.
    Mary Grace

  5. #55
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    ((((((Lisa & Caitlin)))))) ~

    I'm so glad that you were able to speak to the surgeon's PA. How great it is to have the technology to send the photos of the bloody dressings via email! Sending prayers that the extra dressing changes stem the tide, and that you get the extra bandages pronto! No return visit to the hospital!

    Did the PA give any indication of what might be causing the bleeding? Pressure when sitting? Movement from bed to chair and back? Turning? Any correlation to Caitlin's low hemoglobin?

    Any short cut to school registration is a blessing! You have your hands full. Now there's an understatement!

    It's hard to remember things that you don't normally buy when shopping. Especially, when you are exhausted and your mind is overflowing with thoughts and concerns. At least you remembered to get the protein powder! Perhaps Super Grandma could pick up some spinach and kale for you?

    That's wonderful that you like your new neighbors, and that Brandon has a new friend! And they brought you food! Tacos, no less! I like your neighbors. Can I have them? Because my neighbors ... well ... all of the ones, who were family to us, have moved or passed away, and their replacements are pretty isolated and cold.

    Healing and strengthening prayers continuing ~

    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.

  6. #56
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((HUGS TO ALL)))))) ~

    I was thinking about starting a new thread for August. What say ye?

    I've been hoping that we would hear from Tamie, and I think that Donna is still at the lake. Erin is on vacation? Can't recall when her vacation was scheduled. Can barely remember my own name these days ... Thank you for checking in funnylegs 4, and I think I owe you a response. I did read your blog, and I intended to reply to it, but I can't recall whether I did.

    OUR UPDATE

    Everything was tickety boo with Jon until this past Saturday, when he filled with fluid and gas. He stopped pooping, and his urine output slowed way down. For the past 2 days, Jon's feeding volume has been about 1,000 cc/day, short by 500 cc. We've had to hold his food, in fear that he would vomit and aspirate. Meanwhile, we flushed him with water every hour, when he wasn't on his formula. Hard to believe, but it is possible to be dehydrated, when you're full of fluid. I feared that he would start third spacing (fluid goes into the tissues, severe edema).

    His torso is huge ~ obviously with fluid. It could be lymphedema again, although we've been massaging and using the pillows for positioning, as well as the stockings. His SATS have dropped to the 80s, heart rate is in the 100s, all because of fluid. He is lethargic. Probably experiencing tremendous discomfort, even though he doesn't complain. He's too wiped out to complain.

    We've been irrigating his catheter, because he is putting out a lot of gunk, and we've been praying that would thin the gunk, so that he would have a better flow. It has worked, temporarily, but he is so ready to have that cath changed. His nurse is coming out tomorrow for that purpose.

    Jon's temp goes up as the day moves on, and by nighttime, his temp has reached over 100. I give him cooling baths, which he doesn't enjoy. Everything is a nuisance, when we don't feel good. I agree with that thoroughly. But today, we had to turn him to change his pad, and his sheet, as he's peed over his catheter. He was a trooper.

    It's been 2 days since we have turned him. We fear laying him flat and turning him, because if he vomits, he will aspirate. And after he's been flat, and then he's returned to sitting position, his belly gets even bigger. We have no idea why that is. But it is. So, we have to make that decision, when he goes through this fluid crisis.

    Is it better that he be on a wet pad or better that we turn him, and he aspirates and ends up on a vent in ICU? It's an easy call. We just do our best to lift up his manly bits to clean him, then insert a pad beneath his bits to soak up any further drainage, until we can turn him and change the whole kit and kaboodle.

    Lots of suctioning through his trache, and these are the times when we appreciate his trache and know that we made the right decision to keep it permanently.

    Today, Jon surprised us with his colostomy factory production of bowel output. Two flange changes and humongous movements. So the fluid is going to his bowels instead of his bladder. Maybe the fluid can't seem to push that bladder to unload, so it migrates over to the bowels and pushes that out instead? I don't know. I just know that Jon's doctor explained the craving and demand for water/fluids by both bladder and bowels and that it is a competition.

    After the second flange change, I told Jon, "I think that you've just beaten and shamed American Pharoah."

    I think that most people take for granted their peeing and pooping. Like it will always be fine, and no worries, until they get older. Most people don't obsess over it like I do, like we do here, and recognize, like we do, how vital both processes are to health and well being. You all know, like we know, that one or both of those processes shuts down, everything goes South.

    I'm pleased to report that this evening, the irrigation we gave Jon at 7 p.m. is working, and he is producing more, and it is lighter in color. He continues to outpace American Pharoah in the BM department. We've seen a lot in the 11 years Jon's had his colostomy, but Jim and I agree that this is the most massive output that we can remember.

    But that really isn't saying much, since we seem to forget just about everything anymore. We're constantly reminding each other of things.

    I had to cancel the meeting with the plumber for tomorrow, since Jon's nurse is visiting. I didn't know what time she would arrive, and I didn't want to be in the midst of a plumber conference! He cancelled last Friday, due to some plumbing emergency related to a water main break. We are actually getting an estimate on replacing our 1977 bathroom with a walk in shower, new toilet, new vanity, and tile floor.

    Remember when I mentioned to Jim that I was exhausted, and he said, "Let's remodel the bathroom"? Well, that's what we're doing.

    A leaking faucet in Jon's bathroom has led to a long list of plumbing repairs for our neglected home, and on that list is remodeling our bathroom. Not that I wouldn't absolutely LOVE to have a new bathroom. I just don't know how we're going to pull off this extensive construction, given our circumstances. I mean, we can't even schedule a meeting to discuss the remodel. How are we going to actually be able to have it done?!

    Please join me here ~



    And I'll hand you your

    And we'll pretend for just a few moments that everything is groovy like an old time movie ...

    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,Thanks for the smoothie, It's all "groovy". Hey poetry!
    I'm glad things are starting to resolve for Jon. I hope it continues. I know exactly what you mean about the "output" lol. There are a few people I can actually discuss this with over lunch hahaha. We don't even bat an eye, just maybe a little chuckle when we realize what we're talking about over lunch. Kathleen has actually had a few weeks where her flushes are not as they should be. She had a few accidents since she didn't get it all done during the flush. But then she'll have a great one and be good... She's also had some extra gunk when I cath her. But as long as there's some clear ones and she has no other symptoms I don't worry anymore. Funny what we've learned about "output". We have so many repairs on our "to do" list. New hot water tank, new bathroom floor kitchen floor, paint Kathleen's room, etc.... I hope you get the plumber in and get started... Thanks for the update...
    Mary Grace

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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Sorry to hear Jon is having a rough patch...(((hugs))) That third spacing you described sounds really scary! Yes, I would choose wet pad over aspirating vomit any day! Though I appreciate now how hard it is to change bedding with a loved one that has to bed rolled.

    It is funny how poop/pee talk just flows right out of my mouth, lol. Caitlin just had a bladder scan since she was holding her urine and the nurse was starting to worry a little. I didn't want them to have to cath her so I put on the relaxation app I have on her kindle and chose a "waterfall" sound to play....5 minutes later, voila! Not a lot, but enough to save her from the cath. Could Jon have diarrhea causing the big BMs? Maybe some kind of viral thing going through him? Hope he gets back to baseline soon!

    Sorry to hear you have to cancel the plumber meeting...do you have a 2nd bathroom to use while the remodel happens? I remember when I was a kid and my parents redid the main floor bath. It was an OLD house and we had to use the basement bathroom while that went on. It sucked! The basement was not finished or anything, it was just a toilet kind of in the corner and the shower was a cobbled together thing also. Hope you are able to connect with the plumber and that the estimate comes in at a decent price.

    Still at the hospital...will post on a new august thread...

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  9. #59
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    ((((((HUGS TO ALL)))))) ~

    I will close out this thread with responses to you, Mary Grace and Lisa.

    Many decades ago, a friend of mine, whose son was Michael's classmate, worked in a bank. She often told me about the constant complaining of her co-workers over petty, insignificant, meaningless things. She was fed up with listening to their shallow moaning one day, and shouted at them during lunch, "Look! When you're up to your elbows in your kid's poop, call me!" That silenced them. It's all about perspective.

    Peeing and pooping are the staples of life, and as I said, when they go awry, lots of problems ensue. You all know that as well as, or better than, anyone on this planet.

    Mary Grace, you are now used to Kathleen's devices (my term, since I can't remember the technical terms for them), and you know Kathleen's patterns, when to worry, when not to worry. I'll bet you could train other people in these two devices now. I pray that everything is flowing and going these days for Kathleen. I know you are working hard to keep her strong and healthy before her surgery.

    Lisa, I'm glad that Caitlin was able to avoid the catheter, and I hope that it continues to be so for her, while she's hospitalized. Good idea to use the waterfall sound! Jon's output was like ... well ... soft serve ice cream is our description of it. It wasn't diarrhea. It was just voluminous. And then he stopped pooping again. Nothing at all yesterday or today.

    Jon's nurse changed Jon's catheter yesterday. His SATS were 98!! Heart rate was 78. Just terrific, after the previous days of problems. His urine output in 8 hours was 1200 cc, which is A LOT. We thought all was well, until Jon became lethargic and fell asleep at 9:30 this morning for 3 hours. When he woke up, his SATS were 82, his heart rate was 124, and his temperature was 101.4. His pee had slowed down to 25 cc/hr, which is 5 cc less than the hospital recommends for output. Yet, he'd produced 1200 cc, so why did he stop, and why did his belly blow up with fluid and gas?

    Jim and I went into "ICU Mode" with hands-on him constantly, removing his trache plug for a cough, suctioning, bathing him with a warm wet washcloth, trying to gas him via his G tube with no luck, lymphedema massage, bladder massage, checking his temp every 1/2 hour and his vitals pretty much continuously.

    We irrigated his catheter, but it didn't speed up the urination. His temp went up to 102.4, so we gave him Tylenol 500 mg. We rarely give him Tylenol. After bathing him all day, increasing his fluid intake to keep him hydrated, while he was sweating, his temp is holding at 100.4. SATS are 92, and heart rate is 108 now.

    Jim slept for 3 hours on the living room futon, while Jon was napping. He woke up aching all over, as he always does when he sleeps on that futon. I started my day at 8:30 with a 2 mile walk, and I've basically been on my feet since then, with a few breaks here and there. One to make a sandwich. Jim and I traded time out for a meal, while the other stayed with Jon.

    When Jon was feeling his worst today, he took my hand, looked into my eyes, and said, "Light." Then he said, "Michael."

    And I said, "Yes, Michael's Light is shining on you, and he will be with you through this whole ordeal, as he always is."

    Jon persisted, "Light. Michael."

    And then, I became a bit nervous, "No, Jon, Michael isn't calling you to the Light. He's not calling you to the Light. We will get you through this, and everything will be fine again." Jon relaxed.

    Jim and I went into the kitchen and I asked him, "Are we going to ER?"

    "I hope not," he said. "We've been here before. We'll get him right. His SATS were 98 yesterday! He'll be okay." Then we hugged and believed it would be fine.

    It was 91 degrees here today, and it's going to get hotter as the weekend approaches. We didn't run the a/c, because Jon is naked, and the cold air on him wouldn't help his cause. We have great Dyson fans for cooling, but we were all sweating today.

    I will be in touch with Jon's nurse, who may visit on Friday, if Jon hasn't improved. Maybe take a urine sample to check for infection, although he shows no symptoms in his urine of infection.

    As for the plumbing ... well, this is an awakening to me. Let's say we plan to go ahead with the remodel, and Jon has a crisis like the one he's been in since Saturday, while the remodel is in process. We cannot have that. We simply cannot. I will lose my mind. I was supposed to call today to reschedule. I haven't had a moment to even think about it.

    How can I bathe Jon to bring down his temp, if the water is turned off in our house for construction? And the noise, the mess, the dust, the commotion, the people in and out. Nope. Can't do it. Want to do it. Need to do it. Can't. That's why it needs to be done, because we've not been able to find a time when life allows this kind of activity.

    We need new toilets (we have a bathroom downstairs, off of Jon's bedroom and Michael's room, and a bathroom upstairs, off of our master bedroom). We need a new kitchen faucet. We need the washer hoses replaced. We want a water filtration system. All of those things can be done, but the remodel will have to wait. Quite honestly, I don't have the energy or the coping skills to deal with it now.

    So, that's the long version, which took a bit of time to compose between tending to Jon. I'm looking forward to reporting that Jon is peeing, pooping, and back to his happy, healthy normal self.

    Dreaming of



    and

    and tropical breezes ~

    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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