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Post by ValerieC on Feb 10, 2006 12:23:09 GMT -5
Christine,
I just don't know what to say, and so I'll simply say nothing, but I'll pray for your family and definitely lil Miss Em.
Valerie C
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Post by elenasmom on Feb 10, 2006 12:30:51 GMT -5
I'm so sad to hear about these struggles. You'll be in our prayers too. Gay
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Post by chasemansmom on Feb 10, 2006 17:38:22 GMT -5
Ahhhh beano....(my new nick name for you) I think you and I must get together and write a book, you on the health issues and I on the behavior issues some of our children face. I sat hear reading your post and alternated between laughing and tearing up. I now know who to call if ever they find a drug for Chase's behavior that isnt legal here yet and needs to be smuggled in, you had me at first and then I laughed and laughed, didnt know you had such a sense of humor, I think you must be related to my husband I am so glad to hear that little peachy girl is doing so well after all she has been thru, what I mean is the sitting up, rolling over and talking, LOL to the grrr-ing, that comes on the 21 chromazone you know I think they are all born with that ability!!!! As you may or may not know, Chase takes many of the same drugs you just told us about only we use them to combat behaviors....seems that is a side effect of anti seizure medications. He is taking the topamax right now and seems to be doing well on, knock on wood, he took depokote and became very zombied and gained TONS of weight, but as I see above, there is someone taking it and doing well, besides, Chase was taking ALOT of it and for a different reason. I still have Emily in my thoughts and prayers, and you as well. Life is certainly different then what was expected isnt it? Not our every day garden variety DS, but something I know neither you nor I would want to miss out on. I am so glad you are so close to Pittsburg as I cannot wait to meet you or Emily. Happy birthday very late to her and to your son, I wish them both lives full of health and happiness as that is truely all that counts in this world. Oh before I forget, tylenol is lovely but I have found personally that zantax, ativan and ambien are also WONDERFUL drugs of choice....opps, I meant for us, LOLOLOL!!!! I am sorry Em's birthday wasnt so good but next year as she celebrates her 2nd birthday and is running thru the house terrorizing everyone and everything.....this will be a very funny post to look back on and laugh about how much you wanted her up, lOLOL, I still remember shaking my head and saying I didnt really mean I wanted Chase to be so mobile, and eeekkks, the child still hasnt slowed down!!!! hugs to you beano, you are one tough fantastic awesome positive mom!!!!!! Emily got a good one! Robin PS...I am not a hand holder with babies, I am a head rubber, LOL, is that just as bad?
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Post by Jodi on Feb 11, 2006 20:28:00 GMT -5
Hey Cbean ~
Reading your post reminded me of what someone here once had posted... there will always be someone who has it better and there will always be someone who has it worse than you. Sometimes this makes me feel better - and sometimes I wish I had it better... KWIM?
Hugs to you and little miss Em... you are doing a fantastic job through all of this.
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Post by colleen on Feb 11, 2006 22:16:47 GMT -5
Hey Cbean As Laurie said in another post it is the "little things" that are a BIG DEAL. I can relate about the smiling. Brianna has never had a full blown seizure but we feel there were possible infantile spasms. By the time I found a professional to agree with me and sent me in the direction of a neurologist, the symptoms stopped. The jack-knife head drops, the far away stares, eye rolling (this was about 2 weeks) and this little subtle breathing thing. My daughter did not laugh or smile for almost 6 months. I am sooo mad at myself for not pressing my ped for help with this, but it has worked out in the end. And taught me a valuable lesson, I am her only advocate and we didn't even have to wait for school days to realize that. I will need to be on my game for her at all times. Her first EEG came back abnormal and then the second was sleep deprived (for me mainly) and it was normal. At the same time the subtle behaviors stopped. She now is giggling and smiling at me and whoever pays attention to her. I too treat the smiles and laugh with great attention. It was extremely depressing for awhile. But that is the past and we were fortunate with not having to do meds. My prayers are with you and the little bug. HUGS Colleen ps i dont know if i am still doing the nj move, l think i am sticking with long island
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