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Thread: a little of everything!

  1. #11
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Busy day today! Had my dr appointment this morning, went well! I will be getting a ultrasound of the ovaries to check them out and also a breast MRI soon. She recommended a mammogram or MRI every 6 mo for me with the family history. Had a blood draw of my own and everything was normal they said....though when I looked at the results online, the free T4 was on the very low end of normal. If my hair keeps falling out I will pursue that further. I did start taking a daily multivitamin in August and the nurse who called with results said that low iron can cause the hair loss. So I will give that a try. They said it could be anemia from the heavy bleeding.

    I got a call from Caitlin's neuro nurse today too! Her felbatol level was sub therapeutic so they are raising her noon dose from 3mL to 5mL starting tomorrow. I am glad for that! Though that goofs up my dosing amount that I send to school, a minor thing, but I do keep a log of what I send to them and have it all measured out exactly. We only get enough of that drug for the 30 days of a month, not much of a cushion to give out extra for the school bottle.

    More good news...Brandon got a spot in the percussion section of the school band! They only had 10 spots open! Yay! That is what he wanted...they had to test for it and they were looking for kids that had taken piano, which he does. I am so happy for him! Though this means more after school running for me, at least it is only picking him up though. Once a week after school the band meets and practices as a whole group so I then will have to go pick him up. I am hoping to find a few of his friends to carpool with though so it shouldn't be too bad. If he sits in the front seat, I could fit 2 of his friends in my van also (with all my other kids, it seats up to 7 people). They only have it after school for the 5th grade as their schedule is different from the rest of the middle school grades (6-8). Next yr he will have band during the school day if he stays with it.

    So far my free time has been consumed by medical appointments! And I just scheduled a bunch more, but that is how it goes I guess. I have made some progress in my house, cleaned out the pantry the other day. Threw out 2 garbage bags of old food and junk and 2 grocery bags of recycle paper! The kids have just been throwing their art stuff on the floor in the pantry...all gone now! It is weird to open the door and be able to step inside. Little by little progress is made! :) Story of our lives!

    Lisa O.

    PS, today was the second time of having the van come....it is so nice! I love it! Though I did experiment and tried to do Caitlin's bath in the morning today. I sure don't know how you did it that way Rose! It was too much for me, going to go back to evening baths for her. I have to walk Logan to his bus stop so I felt too rushed trying to get them all out the door.
    Last edited by andromeda31; 09-23-2013 at 06:27 PM.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  2. #12
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    Hey there, Lisa! Good news for Brandon and the school band! And I'm SO happy for you that Caitlin's transportation is finally working out. Good luck with your own health stuff. Gosh it's a worry and I guess it will be forever more - tests every year, given your family history. Good luck with all the millions of things you have on your plate - x! Donna
    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


  3. #13
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa))))))

    My friend, 43, who had a hysterectomy last week due to fibroids and excessive bleeding for over a year, has low thyroid and low iron, as well as adrenal fatigue. Both hypothyroid and anemia can contribute to hair loss. It did for her.

    Here's some basic info on hypothyroidism, including foods to avoid and to eat:

    http://umm.edu/health/medical/altmed...hypothyroidism

    There's tons of info on the internet about hypothyroid. And for some folks, it can be managed without medication.

    But for you, like my friend, I would imagine that it is about getting the bleeding under control. Find out what is causing it (eg. fibroids?) and remedy that. Don't wait as long as my friend did, because she became frail and fragile, while waiting out a solution. In the end, hysterectomy was the last option.

    Reduce your stress as much as possible. I know that seems laughable, but if you can find ways to reduce even the smallest stress, it will help you physically. Cortisol (stress hormone) can wreak havoc on your system.

    Praying the Felbatol increase will go well. I hear you about providing the school med supply. I used to have to make an earthquake kit for my boys for the year. Clothes, diapers, food, meds. All had to fit into a freezer bag! You'd be surprised what I crammed into those bags! But having extra meds for school, plus the kit, plus extra meds at home in case of an earthquake, was quite the challenge pharmacy-wise.

    Yay for Brandon! Are you prepared for his percussion practices at home? I suggest ear plugs.

    I bathed my boys in the a.m., because they were usually soaked in pee when they woke up. Also, especially when I worked outside of our home, I was too tired by 8 at night to bathe them! It was all I could do to carry each of them up the stairs to bed (in their teens). At least at 5 in the morning, I'd had time to lay down and sleep for a couple of hours.

    Plus, quite often, we'd get home by 6:30, unloaded from our '80 Toyota Corrolla, and settled in, when Michael would spike a fever and become ill, so, I'd pack them and their chairs back into the Corrolla, drive to our HMO, unload them, wait for 2 hours to see a doc and be told it was an ear infection or pneumonia, then take them home, feed them and get them to bed at midnight. No time or energy for any of us to go through a bath.

    And I worked overtime at night and on weekends to pay the bills and meet my job deadlines (I wrote proposals and edited environmental documents for engineering projects), so I had zero time at night to bathe my boys.

    But that doesn't work for you! So, I say, stick with what works!

    I'm praying that you get to the root of your bleeding issues, so you can put the kibosh on that. I'm sure you will feel better, and your thyroid would balance, along with your iron, if you can get that resolved.

    Don't forget to include this in your schedule:

    LISA TIME!



    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.

  4. #14
    Distinguished Community Member andromeda31's Avatar
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    OMG stairs! Yikes! I can't imagine...actually I can a little, when we sold our first house we lived in a duplex for 10 months that had the bedrooms upstairs. I was so glad we decided on a ranch style home after that! (we built the one we're in now). Caitlin was only 3 back then so she was pretty light in those days. Up until this past year, Brian actually did all the kids' baths. I am usually worn out too by the end of the day. I knew the day would come when C would not want Dad doing baths though and she started asking me to do it all the time last year. I got out of it for quite a long time though! I would usually read books to the other kids who were waiting their turn. I was really hoping the morning bath would work out, but it was too hard to make 4 lunches and help Logan yet. I think when the boys are a little older I might try it again. Her hair dries & styles better when she gets bathed in the morning. I switched to morning baths on the weekend over the summer and it has worked out good then...but we have less chaos on the weekends! :)

    I actually have to rent a bell kit for Brandon to start out with. I have to double check the band folder I got at the parent meeting. When I looked at the music store website they had bell kit rental and also combo percussion kit rental so I want to make sure I get the right thing. Good thing his room is at the far end of the house! :)

    Hope your friend has a speedy recovery from her hysterectomy. I really lean towards doing that and not messing around with all the 'lesser' options. My dr said they like to try less invasive options first. I don't really care to do that though...but I am waiting to see what the ovary ultrasound shows. Their suggestion is first bc pills, then IUD, then Novasure, then hysterectomy. I asked about the Novasure for me but she said with my csec, they don't like to do that on people anymore. She said she actually had 2 people that had their scar on their uterus rupture during that...yuck! Then they needed a hysterectomy anyway! I always had worse migraines (than I already get) with the pill and I don't care to bother with an IUD. Anyway, we'll see! I looked at the link you had about the thyroid...very interesting! I have read quite a bit, but had never seen any nutrition suggestions before. I do eat pretty close to what they suggest. I had a little laugh at the foods they said to avoid. Rest assured that not many green vegetables pass my lips, lol! :) I do eat fruit & grains quite a bit. Now that the kids are in school all day I have been doing yoga/body flow 3x/wk. That helps my stress a TON! Probably going to bed earlier would help too...good night all!

    Lisa O.
    Last edited by andromeda31; 09-24-2013 at 09:22 AM.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  5. #15
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa))))))

    Stairs! I know!!!

    But, I was foolish and didn't consider the future, probably in denial, believing that my boys would walk and climb stairs, when we bought this house in 1977. However, the two single story models in our tract would not have worked for us either. The halls are too narrow for wheelchairs, walkers and lifts, and the living rooms and family rooms are sunken. The other two 2 story models do not have a downstairs bedroom, and ours does. But the master bedroom is upstairs, so I wanted the boys to be in the room next to me, as I had to get up several times during the night with Michael's seizures.

    When Michael's health began to decline in 1999, we converted our family room to his bedroom. Then, we moved Jon to the downstairs bedroom. We were working our 24 hour shifts, so it was no longer a concern that I be "sleeping" in the room next to the boys.

    For Christmas 1988, we were gifted with the most incredible, life-saving gifts: a fully equipped wheelchair van for 2; a stair chair lift. They saved our family, as I didn't know how I could keep going with all of the lifting as my boys became adults. Then, the next gift in 1992 ~ Jim, a muscular, strong, strapping man. My lifting days were over.

    How far is the "far end of the house?" We're talking percussion, here. From bells to a drum kit, just be prepared, Mama! The future might hold your garage being soundproofed with teens rehearsing in it one day.

    Thanks for your good thoughts for my friend. She's been through the wringer, and it's taking longer to recover, because she was in poor shape going into surgery.

    Of course, no options are all that fabulous, including a hysterectomy. The concern there is a future issue with the pelvic floor and bladder. One of my friends needed a sling for her bladder a couple of years following her hysterectomy.

    So, the best thing to do is a risk/benefit analysis, as you're doing about your options.

    Another thought is consulting a Naturopath to help you get your system in balance. Once my friend recovers from surgery, that's where she's headed. (She's in Canada.)

    I will pray that you are guided to the right and best decisions for your long term health, Lisa.

    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. #16
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Caitlin was originally in the very end bedroom but I did some rearranging a few yrs ago. I wanted all the kids rooms to be equal size, but somehow the end bedroom is just a little bit smaller than the other 2 kid rooms. So now C's room is closest to ours so I can hear better if she calls out and Brandon is alone in the smaller end room and the other 2 boys share the slightly bigger room (the ceiling is peaked so it looks bigger but it isn't). Anyway! We insulated the wall between the living room and the bedrooms and there is a pocket door that will completely shut the bedroom hallway off. My thoughts at the time were for sleeping babies and keeping the cats out of the bedrooms...I think it will work good for older kids' noise too! We did insulate the garage though also! :) The first plan we drew up had 2 kid bedrooms upstairs and Caitlin's and our master bdrm on the first floor, but I am glad that didn't work out (cost was higher than we wanted), I had to rework the design to get it all onto one level. I had a really great book to work with- http://www.amazon.com/Universal-Kitc...nd+bath+design It was like a textbook almost but I got so many cool ideas. Caitlin was only 3 when we built this so it was hard to know, I also was in denial back then about her abilities. I planned pretty good though, there is not much I would change with the layout.

    I am curious about acupuncture. Has anyone here tried it? Not sure when I would fit another appointment in my life right now though! Caitlin is going to be staying home sick tomorrow. She threw up this evening 4x. Her meds were only in her for about 15 min before that happened and she was just super out of it for like 20 min after vomiting. Brian was gone bow hunting and Brandon was at church for religion (grades 4-9 go on Wednesday nights) so I was stuck! I ended up giving her diastat which knocked her out. I was able to text Brian to pick up Brandon so it worked out. C's bus driver said there was a lot of kids in C's class that were sick and that one of the aides has bronchial pneumonia. Ugh! I was hoping a little bit that having the kids take their vitamins at the end of summer (and continuing now) would help us ward some of these germs off. And then I also worry that it could be due to the dose increase yesterday. I don't think it is shunt related or I definitely would have gone to the ER. I left C's door open so I can peek at her every so often and make sure she is ok. She is doing ok now, sleeping off the diastat and is surrounded by bath towels! Also have her propped up on the bed wedge in case of more vomiting. She does have some nasal congestion so the wedge will help that too. Hoping this passes fast! Tomorrow was only a half day for the kids' at least and I am glad I did all of my errands today. Took my winter quilt to the Laundromat (king size-doesn't fit in home washer) today and put it on the bed since it is C O L D here lately!! Good night 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!!

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