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Thread: Going up!

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    Distinguished Community Member andromeda31's Avatar
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    Default Going up!

    Hi!

    Busy week! No, PT this week, but we did the eye appointments today and got that done before school. Good news, Caitlin's eyes are exactly the same as last year...so I won't have to buy her a new pair of glasses...yay! She takes good care of her glasses now that she is older. I didn't have to use the spare pair from last year hardly at all. I usually buy an expensive pair and a cheapo backup pair. I might still go get another good pair just for variety. We'll see! At least it won't be a rush. Tyler is still farsighted but not bad enough to correct so I am really off the hook! :)

    We had Caitlin's wheelchair lady come to our house and visit. Good news there too! She is going to submit to insurance for a molded seat for Caitlin's wheelchair. Of course the frame is just 5 yrs old now and nowadays the MA wants you to go 7 before springing for a new frame. But I just think it's so weird they will keep putting new seats on the frame, though I sure won't complain! The nice thing is the new molded seat will be able to transfer to a new frame if we should get that in a yr or 2. I've never seen a molded seat but I have heard other people (online) say they liked theirs. The lady said it would also prevent C's curve in spine from worsening as it will better support her. We will be able to get rid of the annoying laterals (trunk pads)...they are always in the way of coats/shirts/wheelchair tray. I was glad about that! She really knew what she was doing, I felt confident in her recommendations. This was the first time we met with her so that was good to feel good about the visit!

    Also got a letter today from Caitlin's teacher for this fall. They did hire a new one and she is fresh out of college! I sure felt old reading the bio that she graduated high school in 2008! I hope she is enthusiastic! We'll see! I will miss C's teacher from the elementary school....she was a little bit older than I (her daughter is in high school) and had so much experience so it will really be a big change this fall. I don't know what happened to the teacher we met in the spring at the IEP mtg who we were told was the teacher. I'm sure eventually I will hear where she went.

    I am excited this week, we are going to take all the kids to the Milwaukee Zoo! We haven't been there since Caitlin was 4! We weren't going to go to Wisconsin Dells overnight this year so I tried to think of a nice day trip that we could do as a complete family and that is what I came up with. :) (WI Dells, we just took the 2 boys and left C & Logy at Brian's parents) I think the kids are good ages yet to enjoy the zoo and then go out to eat somewhere on the way home.

    In not so much fun this week, Brandon gets his impressions for his palate expander. We both are not looking forward to that! I know I will be the meanie turning the key every night (that widens the upper jaw). It is very medieval...my sister had one when we were kids. That's all! Now I really am going to bed (2:14am) :)

    Lisa O.

    PS: Forgot to say, talked to neuro today and we are increasing Caitlin's felbatol a little to control the breakthrough seizures and give her a good start to school. Yay! I start the increase tomorrow morning. Looking forward to seeing good results!! Fingers crossed! Her labs were good except for the vitamin D...Dr wants her to take 2000IU/day and check again in 3mo. I was happy I found a nice liquid version tonight at the grocery store. Another med to remember, but I know it is an important one! (strong bones and all)
    Last edited by andromeda31; 08-16-2013 at 11:17 PM.
    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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    Distinguished Community Member andromeda31's Avatar
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    Uh oh! She didn't like the liquid version of vitamin D....and of course I bought 2 bottles of it last night! Going to try to mix it with some orange juice tomorrow and see if I can hide it in that....so far so good on the felbatol increase.

    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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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Night Owl))))))

    The Eyes Have It! Good news on the eye exam!

    Michael was fitted for a molded seat. It was an interesting process. He didn't get to use it, so I can't offer you an opinion. Seats on an old frame and expanding/growing frames. Sounds like the wheelchair biz and state regs are still the same all of these years later. I hope the seat works perfectly for Caitlin.

    I will be interested in Caitlin's take on her new, young teacher. Perhaps the teacher's youth will be an advantage in bonding between them. More peer than mother-like, if you know what I mean.

    The Zoo! Great idea! Have a fantastic time!

    Saying a prayer that the medieval palate expander isn't painful for Brandon. (And may there be no leeches or blood-letting in his future! )

    Vitamin D ~ is it Vit. D3 with cholecaciferol? Hope you can find a tolerable disguise for it.

    And saying a prayer that the increased Felbatol will conquer Caitlin's breakthrough seizures.

    Good luck in adjusting your night owling to the new schedule.

    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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    Gosh it never really slows down for you guys does it. Lots of good news though. Kathleen just had her eye exam too and hers didn't change. We got a really neat pair of glasses for her last year so I'm glad we don't have to get another pair. They're called Specs for Us. They're made primarily for kids with Down syndrome but they work well for kids in general. They have a specially placed nose piece that sets the glasses higher on the nose so they stay up better. We took Kathleen to the zoo last week she had a great time.
    Generally I never wanted a brand new teacher but in first grade she had one and she was our favorite teacher. So much so that our families have become best friends. We even vacation together every summer. I hope it's a great year for Caitlin.
    Kathleen had to take vitamin D for a while we used Gummies. If you can't hide the flavor maybe you can exchange the unopened bottle got gummies. We've been able to hide some stuff in a small amount of Italian ice or a half of popcycle mushed up to slushy-like. I hope the new seat works well.
    Mary Grace

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    What's a palate expander?? Liquid D3. Never tried that. I use the tiny pills under the tongue for D3.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((funnylegs4))))))

    Here's a Google search on palate (or palatal) expander:

    https://www.google.com/search?client...xpander&rls=en

    Looks uncomfortable!

    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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    My older daughter had a palate expander when she was about 8. It wasn't too bad a little uncomfortable till she got used to it. It was a little creepy turning the key.
    Mary Grace

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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Glad to hear some more palate expander stories....he is starting to get nervous about it. It didn't help when my mom talked about when my sister had hers taken out (some tissue kindof grew between it and the roof of her mouth, gross!). I shushed her before she could say exactly. He won't have it on for too long, his whole treatment plan only goes for a year, lucky boy! I had braces for almost 4 yrs!

    The D she is taking is the D3. I tasted it myself the day after she complained about the liquid, it really wasn't too bad. Mostly like licking olive oil but it had a hint of orange taste. For her, I hid it in an ounce of OJ and she drank it right down with no complaint. I put her miralax in OJ so she is used to having that mixed with meds already.

    A weird change that just happened for her that is good...I usually mix her Depakote with applesauce and I was running really low and didn't have more (which is unlike me, but oh well!). I thought hmmm, what can I mix this with to get by until I go to the store? I spied Brian's plain yogurt in the fridge, figured it was only for the one evening....and she LOVED it! Well, that night I went grocery shopping so I bought a little thing of Chobani greek yogurt, plain flavor. I worried she would notice the thicker texture but she actually liked it better! She would have eaten the whole little tub of it I think! It is nice since it has so much more protein in it (18g I think!). And the plain flavor doesn't have a ton of added stuff or sugars in it. I have tried yogurt with her in the past and she was just "eh" with it. I have never seen her so enthusiastic over it! I went to walmart tonight to pick up something else and got some more little tubs of chobani too....looked at the big tubs (how I usually buy yogurt) and dang...she likes the thing that costs $5/tub!! Probably going to stick to buying the little ones, just in case she decides she hates it suddenly or something. (the cheap plain yogurt I get Brian is only 1.69/tub). It will be nice if she keeps liking it, I can buy the little ones and send them in her lunch to school. She won't eat sandwiches anymore for some reason.

    Hope all is good with everyone! 2:09, another late night...

    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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    OMG I don't know how you survive staying up till 2am! I'm usually falling asleep sitting up at 9. My daughter hasn't have the expander for too long either it felt a little strange at first and sounded funny talking for a bit. She then had to wear headgear at night. Kathleen loves yogurt she eats Oikos greek fruit her favorite it black cherry. She never liked eating sandwiches especially at school, I figured out after a while that it's most likely because she hates when the bread sticks to the roof of her mouth. She has a very high and deep palate and she can't get it out herself. I have to use my finger to dig it out.I'm sure that would be annoying at school. What she does love to take to school is egg salad ,chicken salad,hummis, or tuna salad and she scoops it with either crackers or chips(all gluten free of course). There are some really healthy chips out there. She would eat this everyday if I let her. She also brings yogurt, fruit, carrots, salad(I chop it really small so it isn't too messy). She also likes cubes of cheese and chicken. That's great that she likes the yogurt and got the vitamin down.
    Mary Grace

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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Mary, I forgot to thank you last night for the suggestion about the specs for us glasses...those sound really cool! Caitlin has that problem of the glasses sliding down her nose and then trying to duck her head to see through them. I looked at their website and Shopko (a local store) carries them in their optical department. They didn't list the prices though, but I will check into it and see how it compares to walmart. They sound like they would be perfect for Caitlin, her head is narrow (her hair hides this) from her prematurity.

    I tend to feed Caitlin her food...I eat my food and say to her to try on her own (while I eat mine) and then when I am done I help her. I always put some stuff she can do herself to encourage that. But typically most of what she actually eats is fed by me to her. It's a hard habit to break! I think that is why she doesn't eat much at school. It's going to be weird making 4 lunches this year every day! I start out with good intentions every year about making fun and a variety of stuff in their lunches but soon enough I end up looking at the ads for 10 for $10 on the lunchables, lol!! :) Last yr I started doing 'hot lunch Fridays' also, which the kids loved until they realized that hot lunch wasn't all as great as they thought it would be, but that was too bad for them. Caitlin did enjoy the hot lunches though at least usually, they said she did eat those pretty good. Only 13 more days until they start back!! :)

    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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