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Beth's Mom · 10-18-2002, 08:41 PM

I AM SO FLATTERED THAT YOU MISSED ME! -- The months I spent on here I truly became attached to all of you and will now need to read messages to get caught up to speed. Feel free to send me an update on your lives since last June!

We went to our cottage in the Upper Peninsula of Michigan the end of June. My mother was with us for a little bit but she and the family decided to do a resthome to keep her safe as she falls a lot...she gets out almost every weekend though to stay with one of her 4 kids./ We also had a lot of company. I really wished I could have hung a sign saying, "I love you all, but we need time with our daughter Beth."

We think that Beth must have been awake nights when we slept as she was so tired in the daytime. Since returning we put her back on Ambian and she sleeps well at night with fewer seizures.
Still, the school schedule of getting up at 5 and to bed by 8 is rough on Beth. I had taken off 21 days last year and husband Bob another 21 days to watch her on days with seizures. She had a bad fall in the spring and we weren't confident about her return to the sheltered workshop in the fall.
Beth had a drop down seizure with nothing leading up to it one night at the cottage...it was my breaking point...I told Bob this is my 25th year of teaching and I plan to retire. I am tired of hiring babysitters and want to be home with her myself. I worry a little about the lack of money in retirement, but think I will probably find something part-time to do at home ...I feel very capable of many things after being in the classroom with youth for all those years!!!

So, we are happy just to be at a standstill at the moment. Son RC has stepped forward to care for Beth and is taking his college classes at night. We are paying him to be the caregiver as he is moving into a first home with the mother of his 2 yr, old son (this is their 6th year together)and is getting married to her in March of next year...cross your fingers it all goes well!

Though I still have my worries over things to work on with Beth (poor eating still and sporadic seizure activity)I am hopeful we can at least give her a happy life. She is sleeping out in her little motorhome with her Dad tonight as she ate her dinner for us. We do her nails every night (she likes them painted purple only) and life is really one day at a time.

I hope that God has blessed all of you in many ways. Let me know how you are doing and maybe we can come up with things to help one another.
Glad to be back with all of you!

Beth's Mom....Marilyn

Ksavage · 10-19-2002, 04:46 AM

WELCOME BACK!!!!! http://www.healthboards.com/ubb/dance.gif

I am so glad to see that you have returned! I have been thinking of you and a bit worried that you were gone for so long. I hope you were able to get at least alittle rest over the summer.

Beth sure is lucky to have the family support that she has and what would she ever do without her Mom? I hope you guys are able to get things under control for her as soon as possible! (if there is such a thing)
& PURPLE! What great taste she has! I would give ANYTHING to have my nails done on a mionthly basis let alone a NIGHTLY one!

& YEP! It's a girl! Her name is Riley Nicole and she is due to greet us on the 27th of December. She was quite the surprise for us, but we have never been more happy. I was very concerned in the begining with the seisures & all but I have not had any since about my 3rd week in pregnancy. Well.....I think that is about har fare along I was when I last had a seizure anyway. I was almost 10 weeks pregnant before we knew it. I had all the signs but I kept chalking everything up to the side effects from all the meds they had me on. DUH!!!! I really felt sorta silly to not have known, but this is my first baby so I also use that as an exuse!

I do plan on breast feeding her and after talking to my Neurologist I still have not decided if I am going to go back on any meds after she is born. I am going to continue to stay at home with her & I do not feel I can be on the meds & safetly take care of my baby. I have been on every drug possible I think & they all made me feel terribly drunk & very clumsy & all I did was sleep. I just do not think I can function when I am on them. My husband & I decided that we would almost rather deal with the seizure activity rather than all the side effects. Pr-pregnancy I would have anywhere from 2-4 Gran-mals a month. If that pattern returns after I deliver then I think we would be more prepared to deal with a few days a month of being out of commision versus everyday of being out of commision with the meds. My Neuorologist is leaving it in our hands & we have put it in God's hands. Please put us in your prayers about this tough choice we are about to be faced with!

So glad to see that you are back & I want details of your vacation!!!!!!

Big hugs to you & Beth!

http://www.healthboards.com/ubb/heart.gif
Kim

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Yesterday is the past, tomorrow is the future, today is a GIFT, that it is why it is called the present.

Rebecca's Mom · 10-19-2002, 07:36 AM

Hi - I am Rebecca's Mom and new to this board. I tried to find your full story on this board to get a better feel for your situation with your daughter but couldn't find it. Sounds like you have been caregiving for many years and have lots of experience behind you. I would like to tap into that if I may. We have a 17yr old daughter with lennox gastaut who seizures sporadically. She can go for weeks without a large seizure but always has many little ones going on which wear her out. She has drop seizures as well. She has tonic clonic but we have managed to keep her safe as of late.At this time alot of her seizing is at night so she is safe in bed and we respond to her immediately. In the past she has had injury. She functions at around age 4 and has had a VNS and a corpus collosotomy as well as being on the keto. diet. We are concerned about long term care as we are worn out, but we love her to pieces and hope we make all the right decisions. Big package. How do you manage and do you have any long term plans or hopes? Kind regards.........Paula

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