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Thread: 1 last week of summer!

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    Distinguished Community Member andromeda31's Avatar
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    Default 1 last week of summer!

    Hi!

    For me, fall starts when school starts. :) Picked up an empty labeled bottle tonight for Caitlin's felbatol to bring to school for her noon dose. Going to be weird for me to give up complete control of the medicating. I'm not too good at delegating! It's been a good & bad week for me. Caitlin's new AFO's gave her some nasty pressure areas...not sores yet but they are still red 'pre-sores' where they were rubbing...still red after a few days break! She has PT tomorrow so we will have PT look at them and see if she can pad them somehow. I was excited to find some ankle braces online that are actually small enough to fit C's ankles (which are a tiny 6" around). XXSmall! The thing that annoys me is I asked the doctors at the CP Clinic about something like this for her to wear at night. They haven't arrived in the mail yet, but my plan is to put these on her feet at night so that hopefully her feet will get used to being in the correct, neutral position and she will tolerate her real AFO's better during the day. And we could even put the off the shelf braces on when her afo's come off (she usually gets those off by lunchtime-can only stand to wear them a few hrs). The off the shelf ones are soft, not hard plastic so I am hoping they don't rub her pressure points. Here is what they look like: http://www.betterbraces.com/procare-...-ankle-support Cool, eh?! :) Her new glasses are in, going to pick them up tomorrow. I ordered the transitions lenses for them (for the first time ever). I think that will be nice for her when she is outside to have the 'sunglasses' protection.

    My biggest drama this week though was not C, but my 7 yr old Tyler. He has been having headaches all the time for over 2 wks now. I thought maybe he needed glasses so I had his eyes checked last week...nope, farsighted, but not enough to need correction eye dr said. So I had the pediatrician have a look at him. She recommended a CT scan as he said he was having them in the morning when he wakes up (a red flag she said). So I've been a little stressed about that! So he had the CT scan this morning....they called me within an hour with results...totally normal! So GLAD!! I think he might be nervous about school starting up...he had troubles with his teacher last yr, but this yr he got a better teacher so I am hoping once school starts he will feel better about going to school. It's never dull around here! I did have a good weekend at least! The baby shower I hosted for my sis-in-law (Brian's sister) went GREAT! Lots of food & great visiting with family. Nice to be able to close my closet door again finally as I had boxes of stuff for it all over our room for 2 months!!

    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. #2
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    I know what you mean about fall seems to start when school starts. Kathleen starts back next Tuesday. It's soooo hard to let go and not be there even after all these years. Kathleen starts high school!!! Luckily she has a great TA with her who has been with ehr for a couple years. I hope her AFO's don't cuase a sore. I'll have to check out the ankle braces for night. Kathleen gets botox in her left (stroke side) ankle and the last time it didn't work as well so they have to up the dose next time. Maybe the nigth brace would help keep it stretched better inbetween.
    so sorry about the headaches... I hope they ease up. If they don't though I would ask for an MRI. The cT only shows larger abnormalities and the MRI much smaller.
    Mary Grace

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    Distinguished Community Member andromeda31's Avatar
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    I hope her transition to high school goes well!! We're keeping Caitlin in 4th grade for one more year so I don't have any stresses about sending her off....all the same teachers & aides that we love so no worries there. :) My other son is in 4th also so next yr will be filled with changes as they will both move up to the middle school together. It will work out nice for me for dropping off/picking up, but will be weird to leave the elementary behind! I didn't know that about the ct vs mri. I had worried a bit about getting radiation from the ct, I know mri has none, but I am bad at speaking up! Dr said if ct was normal (which it was), to try giving ibuprofin 3x/daily for 2 wks to break the headache cycle. And now he got stung by a bee yesterday and his ring finger is all swelled up so he is getting the ibuprofin for sure! (called phone nurse on the sting). My hubby and I are discussing his tonsils & adnoids also...we are wondering if his sleep could be being impacted by adnoids blocking airway. Tyler's sleep has always been 'broken'...he sleepwalks and talks and frequently will wake up. When Caitlin had hers out, the surgeon said her adnoids were almost completely blocking the airway! My other son had bad sleep apnea and got his out for that. I'm taking Caitlin & Brandon for an orthodontic consult in september and am planning to ask the ortho maybe his opinion on that. My sister had her tonsils/adnoids out from the orthodontist's recommendation when we were kids. I know I've read how kids can have behavior issues with bad sleep and we see some of those things with Tyler. The fun never ends! LOL! :)

    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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    ((((((Lisa))))))

    Very cool ankle braces ~ I hope that they work well for Caitlin. Very clever of you there, Mom! I'm sorry to hear about her AFO pressure sores, and I'm hoping her PT can improvise some padding for her. And good idea on the transitions lenses for her glasses.

    It seems feasible that Tyler's headaches could be associated with sleep deprivation. Although I know it is surgery, it might be worth it to remove his tonsils/adenoids, just to see if that improves his sleeping habits. I don't even know why we have tonsils and adenoids, or an appendix, or a redundant colon. All of this extra stuff we don't need that can cause us problems.

    I hope that the Ibuprofen helps, but just a cautionary note there that it can be quite hard on the liver, and it can lose its efficacy fairly rapidly requiring higher doses. Perhaps you could start with the smallest dose, and only give it to him if he complains of a headache or if his headache returns. Has migraine been ruled out?

    Lots of changes, but that's good. It's all progress.

    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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