Melinda S in TX
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Posts posted by Melinda S in TX
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I listen to audiobooks in the car, and I always have a book with me just in case I have a minute to read.
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We love audio books. I don't know the ages you are looking for, but some of our favorites are The Scarlet Pimpernel, Les Miserables, Island of the Blue Dolphins, The Princess and Curdy, The Princess and the Goblin, Sara Plain and Tall, Robinson Crusoe, Ann of Green Gables. We just got The Screwtape Letters, but haven't listened to it yet.
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We use a usb hub to connect all of the extra things to.
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Church
TSC for rabbit water bottles
unload the flooring stuff from the van so the contractors can lay it tomorrow
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I had a hard time digging to the bottom of a chest freezer and always lost things. I have two uprights now, and we have lost a freezer full of food twice because one of the big children didn't close it all the way. Rule is to close it and lock it each time, but it still happened. I will keep getting uprights though.
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Lights above sink were probably added after ceiling light was already there.
This is a brand new addition. Last week they ran the electric wires. This week they put up the walls and painted everything. Today they finally got the lights hooked up. I went to look after everyone was gone and found the lights were not right. I've texted the contractor. He said it should be right, but he'll check and see what the electrician did.
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We are having a kitchen added on. The latest crazy thing my builder has done is with the lighting. There is recessed lighting in the main area of the kitchen. There is also a light above each sink (two sinks on two different walls). In order to turn on the light above the sink, you have to have the main kitchen lights on. There is a switch by each sink, but it only turns the light off if the main lights are on. How hard would this be to fix? Does this mean tearing out the walls and running more wire or what?
Also, for my son, would the lights being this way bother you? He doesn't see what the big deal is.
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I am busy. Super crazy busy all the time, and I can't stand it. I am overwhelmed and stressed, but there is not a lot I can do about it except keep plugging on. I'm not trying to win some award or get out of anything. I just don't have time. I haven't read a book, sewn, or done handiwork for pleasure in a long time. My to do list is pages long, and there are never enough hours in my day. The only things I do that I don't have to do are read my Bible and go to church.
Lots of people chose to be busy and fill their schedules. There are also people who don't have a lot of choice and they, I think, are the ones who suffer because of it.
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@Melinda if your DD is 17, she is old enough to be in any Teaching Hospital. A teaching hospital is one affiliated with a Medical School. She will get the highest quality care in a teaching hospital. GL to her!
The teaching hospital in our town would not take Rebekah in October. They said her mast cell activation syndrome was too complicated and so little is known about mcas that they didn't feel equipped to treat her. She has been seen in their allergy department by two different doctors and both did a test or two and said they couldn't help her. The endocrinologist told her it was all in her head. When I asked about the test results being out of the range, he screamed at us. This is a huge teaching hospital with clinics all over our state.
The actual hospital that did take Rebekah in October was another teaching hospital. Rebekah saw specialist after specialist and none of them could figure anything out. When I would give them research from their medical journals, they would ignore it. They put in a feeding tube, got her weight up a few pounds, and discharged her.
The best help we have found for Rebekah is finding people online that have her illnesses and going to their doctors. But her illnesses are rare and the few doctors that know anything about it are in high demand. Our family doctor has been wonderful, ordering any tests we need and making referrals.
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I am not in your situation, but I think your friend means keep her continuation of care at this hospital.
If you are struggling to find a diagnosis for your dd, going to an elite children's hospital in your region might be the best choice. A close relative worked at a world-renowned children's hospital (there was a significant international patient base), and the doctors there have seen more unusual cases in a year than any local doctor could see in a lifetime. Why? Because that's where the unusual cases go when good, but less experienced doctors can't solve the problem.
I wouldn't respond to your friend's email, but I would consider her advice. One of the first things DH and I do when it comes to care for our children is we ask our doctors, "Where would you go?"
I do want to say that I agree about considering going to a well known children's hospital. My experience is that they are not easy to get in. We needed a referral and even then we were triaged (even with a possible brain tumor) and had to wait to get into specialists. But once you are a patient of any of the doctors you are expedited for any further care and treatment is coordinated with other doctors at the hospital. (I don't know if it is like this at all children's hospitals but it is at our local well known children's hospital.)
The problem is we can't find all the specialists dd needs at one place and almost none at children's hospitals. We have a CaringBridge site where we keep everyone updated on our family (Hannah's cancer, Steven's cancer, and now Rebekah's health issues). There is a family on there that has three daughters with almost all of Rebekah's problems. They recommended things for us to research and that got us started with answers for dd. Their doctor is one of the top US mast cell doctors, but he is a plane ride away and booking appointments for the end of 2016.
Dd cardiologist gets referrals from all over the US. He is a very well known Pots specialist and is very thorough, but he is an adult cardiologist and has his own clinic. He tried treating dd, but she reacted to all the medications. He is willing to treat her once we get the reactions under control.
Dd geneticist is very familiar with all of dd's diagnosises and how they fit together. He was the first one to explain how this happened. He and dd's cardiologist collaborate and do a lot of research in this area.
There are about five allergists who specialize in mast cells in our state. None of them are connected to hospitals. Dd has seen three of them. One is six hours away. Dd doesn't travel well so he started treatment and helped us find someone closer to home. We saw the doctor closer to home. He agreed with dd diagnosis and started her on treatment, but he is booking appointments six months out. Dd can't wait six months. She can't wait six weeks. We started with a new doctor, who again agreed with dd's mast cell diagnosis, and she is more available. She is treating dd and is always available by phone or email. Appointments are two weeks out.
Our family doctor diagnosed the Chronic Epstein Barr and has been so helpful.
The new gi we just met yesterday. He is at our local children's hospital, but they only take referrals from inside the system. We had to get my mil's doctor to take dd on as a patient so that she could refer dd to gi. This doctor knows some about dd's other illnesses, but he is tentatively adding a new one.
When you have rarer problems, regular doctors aren't usually much help. Dd went to three allergists associated with our state's children's hospitals. One did a blood test, said dd didn't have mastocytosis and no other mast cell diseases existed. Another allergist skin tested dd which was mostly negative. She said dd wasn't allergic, but she couldn't explain why dd quit breathing when exposed to milk, eggs, etc. It wasn't an allergy so she wasn't concerned. The allergist when dd was hospitalized said dd did have some allergies, but they had nothing to do with her illness based on one bloodtest. She also couldn't explain the asthma attacks and other reactions since dd wasn't allergic. We had similar experiences with dd's other problems.
Our local hospital is a huge teaching hospital (with a children's hospital), and I'm sure they have some good doctors. Our experience has been that they are more helpful in finding out not wrong than what is wrong. We have had to find people who have dd's illnesses and find their doctors.
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I would do nothing. It's not worth the effort, and I agree with the PP that you can continue to focus your attention on your dd.
My question though is why would she suggest *leaving* your dd? What advantage is there in that? (Is she implying that you're the cause of this?)
I wonder if "leave her there" means keep her there, staying with her, basically staying at the hospital with her as an inpatient until you have an answer. Of course, doctors/hospitals determine admitting and discharging criteria last time I checked, so I'm not sure how that would work. At first I read it the way you interpreted it, but that's just crazy, so I wondered if she meant the less crazy (but still unsolicited) advice. Either way, I would probably just ignore/delete her email.
:grouphug: I'm sorry you guys are going through this.
((HUGS)) I'm sorry you guys are going through this! My friend's daughter has a lot of the same things and it is a daily struggle for them. I would either ignore this person or say "Thank you, we'll keep your ideas in mind." End of story. I can't imagine advocating for LEAVING her alone in the hospital? Why? What benefit would that have beyond your daughter feeling completely abandoned and you feeling awful and nervous?
Don't reply.
I think she probably meant "leave her there (until you get answers)", not "leave her there (and go away)". But I haven't read it.
Maybe write the reply you want to write- as catharsis- then delete. But I can't see any good coming from saying anything back.
She does mean for me to leave dd alone at the hospital (3hours from home), go home, and let the doctors work things out.
This friend has her own issues. She is severely allergic to fish. She has a bottle of fish free something in her home, but every time she sees fish on the label, she has a heart attack over it. Since she has such a hard time with her allergy issues, she thinks everyone does. She thinks a lot of dd's health problems are mental problems. She thinks dd is scared of a reaction, so she causes the reaction by being scared. She thinks I am enabling dd by not letting the doctors use hand sanitizer near dd and whizzing her away from people smoking, drinking coffee, and just plain old stinky overperfumed people, because they cause her to react.
A couple of months ago, dd was hospitalized due to vomiting and weight loss. The doctors had never seem someone with dd's illnesses and assumed that dd was either anorexic or mental. They flooded her (20+ a day) with psych people. Dd and I were getting pretty tired of all the psych questions and noone was trying to figure out what was really wrong. Our friend and her dd visited. She told us the story about the fish and started in on how she understood that dd felt sick, but the mind was very powerful and could make you feel like that even though you weren't really that sick It was a mind thing. Dd slightly smiled at me and I smiled back. We had been hearing that all day long from all the doctors, and we couldn't believe friend was saying that. Friend got mad, told me not to smile and said dd always had an attitude. They got up immediately to leave and she wouldn't even say goodbye. This friend does not know dd. We only see their family a few times a year and for the last three years dd has been too sick to visit with anyone. Even when she was well, dd was the most mild mannered, mature for her age, quiet person you could ever meet. I don't know why friend said that about her.
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I need to send an email, but I don't know what to say. Or maybe I shouldn't say anything, but that doesn't deal with the problem. No matter what I say, unless I do what she says, this friend (the wife) will be offended.
17dd is very sick and has been for a little over three years. We have been seeing doctor after doctor trying to find out what is wrong with her and what we can do to help her recover. We have several diagnosises. Some are rarer than others, but they are not your mainstream illnesses.
We have some friends. We don't see them often, but I know if I needed help, they would come. Dd has been having a very rough week. Monday I had to administer her epipen and then she had an ambulance ride to the ER. Tuesday she had another reaction and was transported via ambulance to the ER. Wednesday we had a consult with a gastroenterologist. Today we spent half the day getting fluids and then went to get her ng tube (tube from nose to stomach) changed to an nj tube (tube to intestines). I have been updating on CaringBridge and then I receive an email from my friend. She said she wanted to restate her husband's opinion(her husband was a doctor and just recently retired on disability) that I should take dd to a well known children's hospital in our state, admit her, and leave her there. She says it will be hard, but I need to trust their advice and the doctors at the children's hospital.
I'm mad and all I can think is that this is the most idiotic thing I have ever heard. I wouldn't leave a person having a normal illness in the hospital alone with noone to advocate for them, let alone someone with rare illnesses.
What should I do? Like I said, no matter what I do, she will be offended.
For anyone interested, dd has been diagnosed with Chronic Epstein Barr, Mast Cell Activation Syndrome, Ehlers Danlos Type 3, Postural Orthostatic Tachycardia Syndrome, gastroparesis, and asthma. Right now, she has no safe foods, reacts to all smells, her nervous system can't stand much stimulation, and she is in a constant state of low grade anaphylaxis. Until today, she couldn't even take a sip of water without vomiting. Hopefully the new tube, bypassing her stomach, will help with that.
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Can someone tell me what the homeschooling laws in Arkansas are?
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Steven and I built our kitchen set when our oldest two dd were 5 and 2. It has seen pretty constant use for the last fifteen years and currently is being used by 8dd and 10dd. They use it as a kitchen, hospital kitchen, and restaurant. Even 12ds and 15ds have been known to stop in for a cup of tea at the restaurant. We made it out of heavy wood, so this will be here for the grandchildren.
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17yo daughter is hospitalized. She is feeling will enough to do something, but her eyesight and concentration aren't great. She would like sites that have lots of pictures to look at. Any recommendations?
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I'm not sure this would actually work for me, but I'm going to try it. As soon as I find the book that is. I actually think it's on my desk behind the monitor, but so are one hundred and one (counted them) books in my currently reading stack.
Does she address what to do with odd things in your house like the sheep shears, goat wormer, and electric cattle prod? The meat grinder currently sitting on my kitchen counter because I have no place to store it even though we make sausage every three months or so?
I don't know how we would ever part with books, even though we have 3000+. Last night the children were putting books away and asking if they could have this one or that one when they left home because it was one of their favorites.
Everyone is deeply sentimental since Steven passed away. I have twenty boxes sitting in my living room of stuff from his office because he never threw anything away. He had every picture the children ever colored, every card or note I had written him. Not only have I not had time to go through the boxes, but the children want to keep everything, including work notes, just because it has his familiar messy handwriting on it.
We have a hard time getting rid of things, even though we don't have enough room for them and are always upset with the clutter. But, I can't really think of anything that someone in this house doesn't use.
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The children and I are getting our farm going. We need a name, but how do we know if someone already uses the name? Can only one business have the name? Where do you go to register your name?
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When Steven was alive, we made sure to spend time on us. Every day before he left for work, we would have coffee or tea together. The children would be up and about getting ready for the day, but Steven and I would sit on the couch or in the porch swing and take a few minutes. On the weekend, we would add an afternoon time and sit for an hour or so. Again, the children were up and about, but they knew to leave us alone to talk. Every night the children were in bed at eight, and we would spend time near each other. We might be reading or using different computers, but near each other and we would im each other across the room. Friday night was date night. Children were in bed by eight and either I would cook or Steven would get Chinese take out. We would eat, talk, and then watch a movie. Together time was important to us.
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I'm currently fighting with United Healthcare too. They are refusing to pay for dd neuropsych eval that her neurologist ordered. Dd is having seizures and losing skills so they want a baseline. I'm fighting for them to cover another dd medication. There is an over the counter med, but she is allergic to it and her doctor ordered it compounded for her. She lives on this med, so we have to have it.
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I have the Garmin nuvi 2555LMT. We named ours Priscilla (in the van) and Sillsby (in the car). I travel frequently for dd doctor appointments and farm related things, and they always get me there fine. They tell me about traffic congestion and often suggest different routes that will save me time.
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We have septic too. When Steven passed away, we had 20-30 people a day here for four days. Not overnight, just during the day. I had to have the tank emptied immediately afterwards. We have a large tank, for a family of eight, but it couldn't handle the load. Get a port a potty or two.
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Thanks for all the help. We are flying from Texas to California for Hannah's Make-a-Wish trip.
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Can you take honey well packed in your checked baggage, and more importantly can you take crochet hooks?
Need some encouragement for long distance homeschooling
in The Chat Board
Posted
I'm sorry you're going through this difficult time. Organization, help, and letting things slide are important. We have been through cancer twice and now 17dd is very ill so our last four+ years have been crazy with doctor appointments and hospital stays. It is hard to juggle and keep things running smoothly. If you can take them with you, do it. Or maybe dh could keep them when your mom first has surgery and then bring them to you later.
Right now each of my children has a spiral notebook, and I write lessons out one week at a time. How independent is your curriculum? If it is very teacher dependent, consider switching (depending on how long you will be doing this) or maybe setting it aside if this is only short term. We made two different schedules, one for when I was home and one for when I was gone. When I was gone, we stopped our history and science curriculum, and I assigned real books for history and an age appropriate textbook for science. They read, we talked about it, and that was it. They spent more time online with things like Gizmos and aha Science . We dropped art, music, and extras. I did switch some curriculum because when I came home I would need something open and go that didn't need a lot of prep or ramping up. This is not the time to be doing TOG.
I'm praying for all of you.
Could your dh look over the lists each night and make sure they checked everything? I had to simplify so I added some online classes.