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Thread: still here! & update.

  1. #1
    Distinguished Community Member andromeda31's Avatar
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    Default still here! & update.

    Hello!

    I'm still here! Actually I just came back from a refreshing road trip (only just overnight) with my mom & aunt to visit my cousin in Madison. It was pretty easy to get away for only one night, not too much work...hubby stayed home with the kids (and his parents helped him entertain them on saturday afternoon). Back to reality though...on thursday, I got Caitlin's Katie Beckett renewal forms in the mail. I tucked them up with my bills and put them out of my mind until tonight. I have to get them done this week and mailed out. No home visit this year so that is good! No time for that stuff!! Only 2 weeks of school left so I have been busy trying to get stuff done around the house before my kids are around more. One thing I am bummed about is quitting my gym I go to. It has been great for stress relief...but with my schedule this summer and Logan starting pre-k in the fall (it is half days) I won't be able to go so I don't want to pay for not going. We'll see how it goes if I can drag my butt to the basement at home and exercise. I have a treadmill but I really enjoyed the group exercise classes and all the ladies that were regulars too. I guess that's been on my mind heavy and also all the medical stuff. It just never gets better. I have still been reading here but just wish I didn't have to make these decisions.

    Caitlin's meds are not working. At her neuro appt in may, the dr said to go up again on the topamax. We will continue to do that until we max out (so 2 more increases after this until max dose for weight). It seems to work for 4-6 wks then regress. Though with the last 2 increases, we have seen less improvement. The EEG in april showed abnormal (of course) though this time the activity was definitely greater in the right temporal side. So we started talking surgery again. She will be Long term monitoring in july, also neuropsych eval to see if she is a good surgical candidate. This would only be palliative, not a cure for the seizures. I am fine with that though, I hate the meds and so does she....and they are not working. A chance for less meds sounds good to me. The next med we could try is felbatol, which all the things about it scream reduced quality of life for Caitlin, & our family. I would rather try surgery first. God I hate deciding these things though. Another bomb got dropped on us too...her neuro is leaving the practice. :( We liked her and will miss her! The one we will be seeing now, we have met him already at least (and I liked him) but it just still sucks to have to start over a new relationship. Caitlin is just not herself lately though, very tired, asking to go to bed right after supper (like at 5:30pm!!!). Hard to find anything positive about all this. I do feel it is a little bit un-PC to be complaining though. I guess that is why I have not posted much here and have stopped putting stuff about Caitlin's medical stuff on fb. I should get to bed so I can catch up on sleep! We got a room with only a king size bed in the hotel (but it was a suite) so I just slept on the couch and my back is a bit achy from that! We were supposed to have a double but I really didn't care and it had a HUGE bathroom so we stayed in the upgrade. My cousin gets discounts from her work at the hotel we were at. It was nice to put all this out of my mind for 24 hrs! Hope all of you are doing well!!

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

    So glad for you that you had a chance to get away. The next time, you should get dibs on the bed, though!

    That's unfortunate that you have to give up the gym, as I'm sure that you benefited from the socialization as well as the exercise. Maybe you can think of something to make the basement workout more enticing ~ music, TV or video?

    I must have missed the part in your post where you were "complaining." You are sharing the challenges facing you, and you aren't thrilled with your options. That's not complaining. You have major decisions like med increases/changes and/or surgery. That is stressful and exhausting. You have every reason to complain, but I don't think you did.

    Poor, sweet Caitlin, struggling with seizures and probably meds making her so fatigued. Just awful ... I know, as we've been through it (and are still going through it with Jon's blasted med levels). Sending up a prayer for the meds to work more effectively, and for guidance for you in the decisions before you.

    Here's hoping that you and the new neuro will develop a rapport quickly. It's a blessing that you already like him.

    Thanks for the update. Please keep us posted.

    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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