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Thread: CN Central Check In

  1. #51
    Distinguished Community Member andromeda31's Avatar
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    (((Rose)))

    I can understand getting obsessed....I have a notebook that has everything that went into (food) and came out of Caitlin for the first 2 years of her life! We were so strict about noting and worrying about everything. I took a long while to be able to 'let it go' that I could not control what she eats. I still worry at times that she doesn't eat enough but she rarely gets sick so I figure if she wasn't getting proper nutrition she would not keep growing taller and would be sick with viral illnesses all the time. You do have legitimate worry with UTIs and stuff, have you found out if the prostate could be affecting output in your research? It is hard to not have definite answers!! Praying you can find something out to explain the changes.

    Wow, those customer service people are unbelievable! I can't imagine having one tell me to f* off, glad Jim was able to stand up for you!! You just wonder what is going thru their mind when they treat someone that way! I called the wheelchair place tuesday, the regular, every 2 week call I now place to them. Ugh. 2 weeks ago, they said 4 weeks. Well, now it has been submitted to insurance and they wait for a response from them and then it will actually get ordered. So about 3 weeks. Gotta love this math! Once they place the order it is 10 days to get the chair. I am hoping to find time today to call BCBS to make sure they got the prior auth request and maybe get it expedited. It makes me mad that I have to do that though. But she totally needs the new chair, she looks worse by the day.

    One good thing: we got in one last time with our neuro that is leaving! Yay! They called me Tuesday and asked if we could come in on Thursday. The first time she offered didn't work since I had Brandon scheduled at 7am for his blood draw for the heart testing. She called back an hour later and offered noon...I took it! :) We had a great visit with the neuro. She was in with us for over an hour! Unreal! :) If only all visits could be like that, based on observations, they are the most talkative when it is their last appointment with us. Our previous one in Milwaukee was like that too, she was moving and we saw her right before she was done and we had a great long visit. No changes though, C is doing well. Had a few breakthrough seizures, but nothing too frequent or serious, not worth messing up with the med doses. We have decided to stick with Madison and have an appointment with the doctor she recommended to us in March (5 months out, which is a typical length between visits for us). We will know Brandon's results in 8-10 weeks. I am hoping we get them before the other 2 get their tests done, but that is before 8 weeks so likely not going to happen.

    Some bad, we met with Brian's lawyer and he shared the first offer from the DA...fines, ignition interlock, lose license for 15 months, all fine acceptable punishments to me and expected....and 60 days in jail! I am rather upset at that last one. We are gathering letters of character reference to give to the lawyer to give to the judge. He said get 5, we asked 10 people. I said better to get more and let the lawyer pick the best ones. I told Brian you might be surprised at what people write for you. He got a really awesome letter the other day from a guy he deals with for work. We both worked with this guy at our previous job (Brian & I met at work)- the guy is a sales rep for electronic parts and Brian still works with him where he is now. They go to lunch about once a month. Brian was like, should I ask him for a letter? I said yes! He wrote it for Brian the same day! It was really awesome and well written! Hopefully all of them will be that quality!

    Sending prayers to everyone here, especially for Tyler & Tamie! (((hugs))) to all!!

    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)))))) ~

    Thank you for your prayers. I haven't researched the prostate issue, because we found TERMITES in our office, and I've been researching treatment options.

    We saw this coming, as several homes in our neighborhood have been tented and then repaired and repainted in the past few months, including our next door neighbors, The GotRocks, who own the "Grand Home" on the street. I can't even imagine the amount of $$ they shoveled into their home for a complete remodel. And their garage! Custom cabinets. In their garage. He drives a BMW. She drives a Mercedes. Their son drives a Range Rover. We're the "po' folk next door." But our gate is 100 times nicer than theirs! Ha!

    Of course, we cannot be tented. We cannot move out of our home for 2 or more days. And we can't take the risk of being in a home fumigated with poison. Fortunately, we found an eco-friendly termite control company, which uses orange oil to eliminate termites. No tenting. The oil is sprayed in the attic and other affected areas, and it is purportedly non-toxic.

    Ironically, B's mom called me today, while she was waiting for an estimate from a roofing company, and she told me she has termites. Her house was tented twice 15 years ago. Our home has never been tented or treated, and it is 37 years old. She doesn't want tenting, so she's going to call the orange oil termiters. I am putting it off, because next week, I have a dental appt. Monday, Tues. podiatry girls are here for Jon, and Weds. Jon has a catheter change. Thursday, Jim will have to go to the store, because we'll be out of food. We can only do one thing a day here, with our limited window of time between sleep shifts and Jon's care.

    To access our attic, we will have to remove cupboards and a countertop, which Jim installed years ago in our office. We make tea and coffee there, as we have no counter space in the kitchen, and it is less noise for Jon during the night and in the morning, when he's sleeping downstairs.

    Jim said it wouldn't be that difficult to remove these things, but he's thinking like he's 20 years younger, and not considering that we have to relocate all of the stuff in those cupboards and on that counter. So, this is going to take some planning. I am not physically up to it right now either. So, I don't know what or when it will happen ...

    Caitlin's Chair ~ The runaround is just preposterous, Lisa. What is wrong with all of these people?! The stress this creates for you, calling and following up, and Caitlin's decline without proper support ... it's just mind boggling to me that this garbage is still going on in 2014. We need regulations!! Oversight!! W/C vendors make a fortune, and the profit on w/c's and other DMEs should be regulated. When I asked the w/c vendor how much Jon's w/c was going to cost, he said about $10k. Then he added, "but Medicaid will only pay $6k."

    What goes on behind the scenes is dickering over the cost of and need for "bells and whistles" on the chair. Insurance says, "what can you take off the chair?" Vendor says, "everything is needed and justified." And so on ...

    These old bones will do the Dance of Joy, when Caitlin finally receives her chair.

    So glad that Caitlin had a good neuro visit. Hope you get Brandon's results sooner rather than later. Praying for good results for everyone ~

    Praying too that Brian's character references will change the DA's mind about punishment. Spending 2 months in jail creates a hardship for you and your children, and it is overreaching in Brian's case. Brian is actively working on his sobriety, and that should factor in, I would think.

    You are awesome strong, Lisa! Remember to take care of yourself!

    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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  4. #53
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    OMG, termites!! I can't imagine how much work that is going to be to deal with that!! I thought the ants we had this summer were bad enough. Would Jim be open to hiring a handyman to help come take apart the counter/cupboards for attic access? That sounds like a lot of work for one person to do alone. Hope the non-toxic stuff kills them all!! I remember watching a Holmes on homes one time that had a house that they found termites in the basement joists and they had to do a LOT of stuff to fix it. :(

    I do have some good news! I found this in Caitlin's backpack this morning....I hadn't emptied it on Friday we were so busy with Halloween and the weekend flew by so I did that this morning....
    20141103_1.jpg

    Cool, eh?! :) When Caitlin was mainstreamed yet, she got pulled out to the resource room for math/reading support and the teacher she had there quit a few years ago and went to work for the CESA (state) agency for special ed. She sent me an email asking if she could use a picture of Caitlin for some kind of bulletin board poster for something and of course I said yes! :) Anyway, just saw this today that she made the cover of this brochure!! I was so excited to see that and just had to share!!

    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!!

  5. #54
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa)))))) ~

    That is so very !!!! As you know, I love that photo of Caitlin and that blouse is perfect on her. And the setting is ideal for the agency. Our girl Caitlin is a SuperModel!

    Also love your new avatar! What a smile! She's a beauty!

    ****** UPDATE ON US ******

    This week, I am not thinking about Termites (she says through pursed lips).

    Yesterday, I had my teeth cleaned, and got great news that my teeth and gums are healthy. Well worth the expense of having all of that work done last year. And INVEST IN A SONICARE TOOTHBRUSH!! It is the most wonderful thing ever invented for your mouth! I should be going for a cleaning every 3 months, but too much happened these past few months to get to the dentist. My dentist said that she was okay with twice a year, since the Sonicare is doing such a great job keeping my teeth and gums healthy. It's definitely worth the investment and saves $$ at the dentist.

    Today, the Podiatry gals visited, and Jon was happy to see them. They always find something in Michael's room to start a conversation. This time is was the sand castle candle holders (Michael's room has an ocean theme), which I have had for years. The company went out of business. Turns out the youngest gal (they are mom and daughter) is having sandcastles as the theme of her wedding next August. I happen to have 3 sandcastle candle holders, unopened, which I bought to give as gifts and never gave them! So, yay! They will be hers for her wedding! I couldn't find them in Michael's closet (which is so stuffed). But I will find them before next August! I gave them their Christmas gifts, as they won't return until 1/4/15, as well as a bag of tangerines which I have been taking off of our neighbor's tree on my morning walks. The tree is loaded with fruit, and it isn't being picked. So, I'm picking 'em!

    Tomorrow, Jon's nurse will be here for his catheter change. The urination over the cath is getting worse. He must have spurted a good 100cc + this afternoon, as I kept putting paper towels under him to sop it up. Then, of course, it was linen change and bath. I did 3 loads of laundry ~ sheets and gowns/shirts today.

    Friday is Jon's 45th birthday. He'll have a balloon bouquet, musical cards, a dozen new DVD movies, 4 new tropical shirts, new slippers for when he gets out of bed and into his wheelchair, and lots of singing by me and Jim.

    B1G game on Saturday, probably our toughest opponent of the season, so we'll be revved up for that.

    Next week is Michael's birthday.

    So, I need to get through all of that, before I can even think about termites and what we need to do to just get ready for the inspection. We have to do it, or the termites will destroy our home.

    A dear friend of ours will most likely be on our doorstep offering to help us. He would move Heaven and Earth for us, and he is a wonderful friend to Jon (they're the same age). So once Jim and I have a plan in place, we'll call him, and we'll just get on with it and get it done. The older we get, the harder it is for us to do these kinds of things. The earthquake clean up took the wind out of our sails for awhile.

    Meanwhile, let's all get our and head for our special place ~



    Sending ((((((HUGS)))))) and love to all ~

    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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