Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 My mother, (God rest her sweet soul), use to love peanut butter and mayo sandwiches...... Are you sick yet Heidi?????? LOL W >>>>>>>>>>>>>>>>>> Gee, I thought maybe my peanut butter, dill pickle,and potato chip sandwich was a little out there!! Guess not! Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 Awwwww !!!!! I finally figured it all out why some of you act soooo verrrrryyyyy Stranggggg at times!!!!!!!!!. LOL It is the darn PEANUT BUTTER !!!!!!!! It went to your Brains you guy's !!! LOL Now lets see how can I help you all over come this horrible Problem ???? OO I know how !!!! Lets see,mmmm 1 Gallon of Castro Oil should cure you all. Right ??? LOLOLOL Heidi Heidi My mother, (God rest her sweet soul), use to love peanut butter and mayo sandwiches...... Are you sick yet Heidi?????? LOL W >>>>>>>>>>>>>>>>>> Gee, I thought maybe my peanut butter, dill pickle,and potato chip sandwich was a little out there!! Guess not! SharonDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2001 Report Share Posted August 8, 2001 Gee, I thought maybe my peanut butter, dill pickle, and potato chip sandwich was a little out there!! Guess not! Sharon I like pickles with my peanut butter and banana sandwich and chips on the side. Yum!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2001 Report Share Posted August 8, 2001 --- Lu1953@... wrote: > In a message dated 08/05/2001 9:57:23 AM Central > Daylight Time, > susuw@... writes: > > > > Gee, I thought maybe my peanut butter, dill > pickle, > > and potato chip sandwich was a little out there!! > > Guess not! Sharon > > > > > > I like pickles with my peanut butter and banana > sandwich and chips on the > side. Yum!!! > Nah! I'm not " out there " at all. I think I fit right in with this group. Sharon ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2001 Report Share Posted August 8, 2001 .. Course what can you expect from somebody that probably irons her hubby's underwear!!! Heidi, I am picking on you!!! LOL. Love ya, Marilyn OH my goodness does Heidi iron Don's underwear too! We are going to have to teach that German a few American rules aren't we? lol LU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2001 Report Share Posted August 8, 2001 Hell, I don't even fold mine and Mike's underwear. Just shove them in the drawer. LOL W That's the southern way to do it ! Everyone should try it, it works GREAT! lol Lu Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 20, 2004 Report Share Posted October 20, 2004 Best wishes on the surgery. Let us know how she is doing and how long she will be inpatient this time around. If you want a call send me the room phone number again at honeybear50317@... and I will call you. Glad to hear some issues are continuing to return. I agree with you that changing our perspectives concerning our kids is a good idea. Asenath and Zipporrah will NEVER be normal in all ways and may get much worse. I know how behind Asenath is because of the annual evaluations, but my response has been how glad I am she is as good as she is considering how bad she could be. So many stroke episodes and having to relearn over and over again can take a toll on their bodies and some things just can't return fully or even at all sometimes. You and your daughter continue to be in my thoughts and prayers. You have been through a lot lately. I am sure it has been a real treasure to see things return and yet hard to watch her struggle so much more than before. Keep in touch and take it easy. Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (11 mon.) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) Re: Too many services?/Heidi > Thanks for the reply. I have been following all of the > updates and think of you and her often. I hope she goes through the > surgery and recovery well. > > It sounds like all of the mito families I've heard from receive a lot > less in the way of services than Sheldon is getting, I think he's > just being worked too much. > > That's great that the signs are coming back so quickly, once Sheldon > loses a sign it seems gone until he relearns it. > > That seems to be a good way to think about it - we've always wanted > the services to catch him up to 'normal' too. That's just not going > to happen. We need to concentrate on what we want him to be able to > do. And I want him to be happy. > > > >- gets one hour each of speech, OT, and PT per week. I plan > >on asking about low vision/mobility services to be added after > > comes back from the hospital. is good for 20 > >minutes of therapy, on a good day, and then falls asleep. PT is > >mainly doing equipment at this point. OT is doing cognitive and play > >skills. Speech is reinforcing signs and doing a little oral motor > >work. In the hospital 's Mito doc wanted NO extra exertion so > >PT did range of motion and stretching. She'll be using a stander so > >she can weight bear and have a change in position. > > > >I agree that it's all about quality of life. I just had a real > >change in perspective with 's recent regression. I needed to > >shift my expectations to " therapy to help play with the toys > >that interest her " from " therapy that will make typical. " > > isn't typical and will never be typical. If therapy stresses > >her out, then we need to find out what aspect of therapy isn't > >agreeing with her and change it. Doctors have suggested that > >receive therapy 2,3 or more times a week in each area. I would > >pursue it if I felt it made ME feel better, but 's energy > >levels would be the same. Right now the therapists give suggestions > >for activities to be tried throughout the week. gets nursing > >care and her nurses are able to work on things for a few minutes here > >and there. Her environment is set up to support her development, > >people are willing to help extend any efforts she makes, and we're > >supporting her body to free up her concentration for play. We > >can't 'make' her develop. Speech or PT every day for 3 hours a day > >couldn't 'make' her develop. For us, the motor 'developmental age' is > >pretty meaningless. I stopped worrying about 'what age' was > >at and started looking at whether or not she can do the things that > >she wants to do. She could, so it wasn't an issue. When people > >asked me if she was walking I always said yes. The fact that she was > >walking with a walker was irrelavent. Same thing with " Can she > >talk? " She had over 100 signs and 'spoke' in sentences. Of course > >she could talk. > > > >Right now has regained some signs and lots of understanding > >but her body isn't cooperating with most motor skills. Walking is a > >long way off if it returns. No amount of therapy will help the > >problems she's having if we don't address the big picture: her body > >is weakened by recurrent infections and we need to get them under > >control. We're doing more than enough by ensuring excellent > >nutrition, minimal body stress, rest, and lots of elmo > > > >'s having lots of surgery next Monday- hiatal hernia reduction > >and diaphragm patched, fundo redone, pyloroplasty, j tube revision. > >She's home this week for a vacation. Please keep her in your prayers! > > > >Heidi, Mom to , 2, mito myopathy, TPN dependent, g and j > >tubes, pseudo obstruction, neurogenic bladder and cathed, dystonia, > >dysautonomia, seizures, low vision and retinitis pigmentosa, RTA, > >elmo's biggest fan! > > > > > > > > > > > > > > > >Please contact mito-owner with any problems or questions. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2006 Report Share Posted February 10, 2006 Thanks for the update Malisa. I'm so sorry to hear that Heidi has so many complications and setbacks. Please let her know that I'm remembering her in my prayers and wish her all the best on her recovery. What a hard time she has lately. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2006 Report Share Posted February 10, 2006 Malisa Thanks for the update on Heidi. I'm sorry she has been having such a hard time. You are such a good friend to so many people. We are all blessed to have you in our lives. I'm sure Heidi feels that way. Please let her know that she will be in my thoughts and prayers. laurie > HI All, > Heidi C. asked me to update on how she's doing. She is still in the rehab > hospital in Boston and has had quite a month. She has a central line b/c of > > being on TPN and ended up with a central line infection in December. She > had a > new central line placed, but when she woke up from the line placement she > was > unable to move for several days and had a stroke like episode. Then, they > placed a GJ tube and several days later she had another stroke like > episode, > losing function in her left hand. She is still having quite a bit of > trouble > walking, moving, sitting and just plain functioning, but she is moving in > the > right direction. Her determination to keep going is pretty amazing. Some > of you > may remember that Heidi lost her 3 yr old daughter to mito back in Sept, > so > this has hit her quite hard. But, she's persevering despite what her > family > has faced recently. > > Please keep her in your prayers. > Malisa > > > Quote Link to comment Share on other sites More sharing options...
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