Guest guest Posted May 5, 2002 Report Share Posted May 5, 2002 Sorry about that-my other half is playing with the wires on the beasty-and giving me Jackie's table to work on. I was hunched over a stool-we met at a square dance when we were both " over the hill! " Both with other people. I can honestly say we are both the worlds worst square dancers-we never listened to the calls, just sort of fell all over the floor laughing-much to the distress of our dates. I didn't take him seriously (Not my date either) but told him to call me-I was in the book! Damned if he didn't. We got engaged in six weeks. That was it, I think every family member was shocked. Lets see. Jackie's wean has been ugly. She went through the drools, the stares, the fogs, the physically there but gone mentally. HOwever, it is now a week since the last and final drop, and she is coming back. We irratate each other! Again! Somehow she is like me so much that we challenge each other. If I like it, she won't. Yet our taste is similar, she has her own mind-again. I think the drugs put so many layers of fogs on her mind, that her personality got lost, and couldn't come out except in brief moments. She is still going in and out a bit, but the fogs are shorter, and less frequent. We are breathing-I feel like I've been holding my breath for 2 1/2 years. Jackie is an only, we " lost one " last winter when I was pregnant, so that's it. We are seriously talking of sending in papers for adoption from china. Alright, I've been talking, got the papers, etc, and Nate has agreed to sign off on it, if Jackie continues to get better! The one good thing of her being an only is that we've been able to focus on the illness, I'm not sure how you coped with two kids! Anyway, I want Jackie to have a sibling because I have a pretty good relationship with mine, and she needs some competition! Emotionally she is bouncing between four (when she got epilepsy) to six and 1/2 which is where she is now. SHe is using her sand box which we got when she was four, and rarely used before now. Her best friends are the cats and the dog. THey seem to be the one to accept her no matter what has been happening. Am I rambling, sorry, put it down to breathing-again. We have found out that we are feeding her " puddings " which are a combination of Beechnut baby food (stage 3) and olive oil/butter, with either sweetener or salt. Some she nixes some she loves. Her " puddings " have ranged from mac n beef to peach and back again. Yes, I admit we help her to eat. It saves our sanity, and at least it goes in her! SHe is drinking the cream straight with a bit of sweetner, and now her ratio is down to 3.65! We've had to adjust her calories down, since she's been gaining weight, and she was supposed to eat 1630, we've dropped her down to 1500. Anyway, the Beechnut " puddings " have helped us, especially when she was zoning out! ANyway, I'm off to get her dressed, we have homework! How nice to say that. Have a good day, and I'll write later! PS: She may be starting the zonegram wean either tomorrow or in another week-be still my fluttering heart! mother of Jackie age 6 kepra and zonegram Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2002 Report Share Posted May 21, 2002 Well we're three weeks down from the last lamictal, and last night she had two little gm's lasting under ten seconds, and woke up almost normal. She is still acting " drunk " and we're not sure if tits the affect of the kepra or the zonegram. Dr. Baron wants us to drop more zonegram, and then she'll be down to one pill a day. I " ll call and confirm his instructions, and try to relay her symptons-again. She's not twitching or absencing, and there have been no drops (knock wood). One of the side affects of too much kepra is stumbling, slurring words, drunkeness, dizziness, etc. Jack has said she was a bit dizzy. Will have to wait and see on that one. Otherwise, she's going to " graduate " from kindergarden on June 9th, and though she's got morning " camp " scheduled, I'm looking forward to some sort of a break. However, we're going to be doing some " school " with Mom in the pm, so that she keeps her skills, and can keep up with the other first graders in her new school. Got to run, I'll send more updates soon. Mother of Jackie age 6 kepra and zonegram keto since 12/10./01 Quote Link to comment Share on other sites More sharing options...
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