Guest guest Posted December 1, 2000 Report Share Posted December 1, 2000 Leah, I am so happy for you and Ashton!! I hope this is just the beginning and more great strides are to follow. It really makes me wonder too, if I should think about putting Brook on a medication like Seroquel. I visited Brook's classroom yesterday to see some of the things his teacher says that he is doing at school which I haven't seen yet at home. She is overly optimistic, but I think she is getting to know him better now that she has had him for 3 months. She likes to tell me about all of these new things he is doing at school. He was attempting to use the mouse on a computer program, however it's hard to tell if he really has any control over making it point at anything particular or he is just moving it and clicking it. He does seem to click on certain letters of the alphabet more often than others, which are more rewarding because they have a little music accompaniment. He was more difficult because I was visiting, but I did see a little bit of progress here and there. He did look at some pictures in a book, which was nice to see. Congratulations again on Ashton's great progress. Marisa Mom to Miles 13, Brook 10 and Gennie 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2009 Report Share Posted December 16, 2009 Hi everyone! Happy Early Merry Christmas, Belated Hannakuh, Kwanza, or whatever your beliefs are, make them happy one... make memories that will keep your heart alive for a later day... We went to Duke Tuesday, stayed the night... I was hoping along with Ashton's peds that she could start on a new protocol for early onset patients, but the neurologist stated " she is to far progressed and it would not be beneficial " . Like giving someone with stage four cancer radiation and chemo, it makes them sicker than a dog only to maybe get a week or two more. She showed him her " memory book " and he spent a considerable amount of time talking with her and me. He said " I wish I had more caregivers of patients like you, willing to give them quality of life " .... that made me feel good... she is having memories... as much as my heart is aching, and breaking, I am determined to make all her dreams come true. We did start a trust at a local bank in her name that SSI can't touch so that people can donate. A good family friend is the trustee... Hopefully that will add some financial relief to me in aiding her happiness. With Christmas coming I have pondered many thoughts. I believe in God, I also believe in different higher powers, but I am also somewhat angry, maybe a small part of that is grief.... because I am a single mom carrying this load and why the hell did it have to be ashton.. i guess all of us on this list ask ourselves that question when something negative arises... But, I have a blanket of warmth and friendship and love that is thrown over me and ashton from here, there, near and far and I try to stay positive. Please just continue to keep us in your thoughts and prayers and that I don't end up in the pysch hosp somewhere hahahahah ......... love and many warm blessings to all, leah, ashton, and cameron virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2009 Report Share Posted December 17, 2009 Leah: Always know we are here for you and wish we could take the pain away. There is power in prayer and that we have someone to go to every minute of the day. He is always there for us as we know that no human can ever make that kind of promise, although we try. Love you! Liz > > > Hi everyone! Happy Early Merry Christmas, Belated Hannakuh, Kwanza, or > whatever your beliefs are, make them happy one... make memories that will > keep your heart alive for a later day... > > We went to Duke Tuesday, stayed the night... I was hoping along with > Ashton's peds that she could start on a new protocol for early onset > patients, but the neurologist stated " she is to far progressed and it would > not be beneficial " . Like giving someone with stage four cancer radiation and > chemo, it makes them sicker than a dog only to maybe get a week or two more. > She showed him her " memory book " and he spent a considerable amount of time > talking with her and me. He said " I wish I had more caregivers of patients > like you, willing to give them quality of life " .... that made me feel > good... she is having memories... as much as my heart is aching, and > breaking, I am determined to make all her dreams come true. We did start a > trust at a local bank in her name that SSI can't touch so that people can > donate. A good family friend is the trustee... Hopefully that will add some > financial relief to me in aiding her happiness. With Christmas coming I have > pondered > many thoughts. I believe in God, I also believe in different higher powers, > but I am also somewhat angry, maybe a small part of that is grief.... > because I am a single mom carrying this load and why the hell did it have to > be ashton.. i guess all of us on this list ask ourselves that question when > something negative arises... > > But, I have a blanket of warmth and friendship and love that is thrown over > me and ashton from here, there, near and far and I try to stay positive. > Please just continue to keep us in your thoughts and prayers and that I > don't end up in the pysch hosp somewhere hahahahah ......... > > love and many warm blessings to all, > leah, ashton, and cameron > virginia > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2009 Report Share Posted December 17, 2009 Leah I am sending you hugs and prayers. You are such a wonderful mom! Amy Mommy to Asher 4 DS/ASD and 5 months NT > > Hi everyone! Happy Early Merry Christmas, Belated Hannakuh, Kwanza, or whatever your beliefs are, make them happy one... make memories that will keep your heart alive for a later day... > > We went to Duke Tuesday, stayed the night... I was hoping along with Ashton's peds that she could start on a new protocol for early onset patients, but the neurologist stated " she is to far progressed and it would not be beneficial " . Like giving someone with stage four cancer radiation and chemo, it makes them sicker than a dog only to maybe get a week or two more. She showed him her " memory book " and he spent a considerable amount of time talking with her and me. He said " I wish I had more caregivers of patients like you, willing to give them quality of life " .... that made me feel good... she is having memories... as much as my heart is aching, and breaking, I am determined to make all her dreams come true. We did start a trust at a local bank in her name that SSI can't touch so that people can donate. A good family friend is the trustee... Hopefully that will add some financial relief to me in aiding her happiness. With Christmas coming I have pondered > many thoughts. I believe in God, I also believe in different higher powers, but I am also somewhat angry, maybe a small part of that is grief.... because I am a single mom carrying this load and why the hell did it have to be ashton.. i guess all of us on this list ask ourselves that question when something negative arises... > > But, I have a blanket of warmth and friendship and love that is thrown over me and ashton from here, there, near and far and I try to stay positive. Please just continue to keep us in your thoughts and prayers and that I don't end up in the pysch hosp somewhere hahahahah ......... > > love and many warm blessings to all, > leah, ashton, and cameron > virginia > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2010 Report Share Posted January 2, 2010 Ashton is ashton.... but now she will only go by sally or hannah... lol.... don't ask me... I just gave birth to her... :-) she is fighting the pneumonia stuff.... rocephin and vantin... changed all her other meds... we are pretty much homebound for now... the weather is sooooo cold and uggy outside... we go see gastro next week at duke for the bleeding.. but knock on wood since her peds changed her tummy meds she hasn't aspirated on food but its only been a few days... and i am really gving her a limited diet... hope everyone had a safe and happy new year celebration..... love to all leah and sally or hanny aka ashton Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2011 Report Share Posted June 1, 2011 Sending tender loving energies to surround Leah & Ashton. Heart hugs, Kris > > Hey everyone, > I only ghost here and there, it's been a crazy time for me the past two months. I don't say much on my facebook either. I feel safe here where I always have. Ashton hasn't been feeling so hot so we did labs, urine, ultrasound, cat scan and xrays. Her liver and gall bladder are F'd up. We are going in Friday for more detailed testing. Please keep her in your prayers. > > love to all, > > Leah > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2011 Report Share Posted June 1, 2011 You're both in my prayers Leah. ashton Hey everyone, I only ghost here and there, it's been a crazy time for me the past two months. I don't say much on my facebook either. I feel safe here where I always have. Ashton hasn't been feeling so hot so we did labs, urine, ultrasound, cat scan and xrays. Her liver and gall bladder are F'd up. We are going in Friday for more detailed testing. Please keep her in your prayers. love to all, Leah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2011 Report Share Posted June 1, 2011 Ow!!!! I had gall bladder problems (gallstones) years ago and it hurt a LOT! I hope Ashton is feeling more comfortable soon. <<<<<hugs>>>>> Sent from my iPhone > You're both in my prayers Leah. > > > ashton > > Hey everyone, > I only ghost here and there, it's been a crazy time for me the past two months. I don't say much on my facebook either. I feel safe here where I always have. Ashton hasn't been feeling so hot so we did labs, urine, ultrasound, cat scan and xrays. Her liver and gall bladder are F'd up. We are going in Friday for more detailed testing. Please keep her in your prayers. > > love to all, > > Leah > > Quote Link to comment Share on other sites More sharing options...
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