Lizzy is doing well and has NOT shut up since they took the tube out! LOL." She wants to go home" she says. She has a bit anxiety right now because of the "circumstances" surrounding her getting intubated. So, after today the plan is getting her weaned off bipap for at least 4 hours to get her home. The doc that intubated her (Jen) did an awesome job with intubation by the xrays she did not even come close to her vocal cords. That is probably the reason she is talking so much now!! She is so loud too!! She is also getting the Pixie bipap mask today made by RESMED. She thinks its a "Tinkerbell"mask and magical!! LOL"We believe in miracles because we live with one!"
Wednesday, March 28, 2012
Tuesday, March 13, 2012
Happy Spring!! - Living with Spinal Muscular Atrophy
Loving this weather!!
Corbyn my grandson turned 3 on Monday!! He spends a lot of time with me along with Lizzy and I would not change that for anything! He is such a cool kid!!
Lizzy has been doing VERY well since December. She has a sinus infection right now but doing well. I mean really who doesn't have sinus issues with this weird weather. Got her on the Zpak . She did great on blood tests last week. One poke and they had to get a lot of blood and drained one vein dry and first poke on the other arm and they got it!! These are our locals!! I insist on blood work every 6 months for her to see how she is doing with her diet and over all. First time it was done locally. Hope it works out. They never left a mark on her. Amazing. My good friend Mary said "It was because of the Vit K she has been getting since last fall" Just hope she is doing well. They have to send off her Essential Amino testing , Carnitine and fatty acids. . I believe they said they were sending to Mayo. I am anxious to see how she is doing.
She has not had school in three weeks because her teacher has been sick. I have her busy with Reader Rabbit and some Arthur projects. She is loving it and actually on the computer programs longer than she has school!!
Lizzy was fitted for a new TLSO and we will be picking that up soon.
Her and I have been stuck home for months!! I guess that is a good thing because we were only ill during Christmas. Some sinus for us all but that is normal for us.She is doing swim therapy, OT and myofasical release.
Its been awhile but with this early spring weather I have been busy starting my tomatoes, flowers and some green peppers from heirloom organic seeds. I have been using a grow lamp on some of my starts 48 tomatoes, green peppers flowers and herbs and hydroponics on 24 plants of the tomatoes. I have all kinds that are heirloom organic seeds from all over the world.
I found some survival kitchen heirloom seeds that can do a 3/4 acre garden. I am loving this too!! Thank you again Pinterest. Tons of articles on doing an organic garden on my page on gardens http://pinterest.com/fightforliz/gardens/ If you want to start on you own organic heirloom garden then check my pins out! Have to take care of my family during this roughest time ever and this is the one thing I can do.
Its getting harder and harder for us to get by these days. Paul has had several interviews and every time we think its in the bag and NOTHING. Keeping our fingers crossed for this last one that he was sure he had after 2 interviews and a pee test with one company. Then, he was called for a 3rd and he was sure he had it . Walked in and there was 6 other applicants ugh........ much younger. Gosh. when does this end? Does this man that worked so hard for his family for so many years get a break and get a job? The stress is tearing us apart inside. It sucks getting old!!
Any way we are trying to remain positive and carry on. I am preparing for a huge growing season and plan on canning everything!! Making my girls have a canning party with me!!
Enjoy this weather!! We are trying to!!!!
"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth
Corbyn my grandson turned 3 on Monday!! He spends a lot of time with me along with Lizzy and I would not change that for anything! He is such a cool kid!!
Lizzy has been doing VERY well since December. She has a sinus infection right now but doing well. I mean really who doesn't have sinus issues with this weird weather. Got her on the Zpak . She did great on blood tests last week. One poke and they had to get a lot of blood and drained one vein dry and first poke on the other arm and they got it!! These are our locals!! I insist on blood work every 6 months for her to see how she is doing with her diet and over all. First time it was done locally. Hope it works out. They never left a mark on her. Amazing. My good friend Mary said "It was because of the Vit K she has been getting since last fall" Just hope she is doing well. They have to send off her Essential Amino testing , Carnitine and fatty acids. . I believe they said they were sending to Mayo. I am anxious to see how she is doing.
She has not had school in three weeks because her teacher has been sick. I have her busy with Reader Rabbit and some Arthur projects. She is loving it and actually on the computer programs longer than she has school!!
Lizzy was fitted for a new TLSO and we will be picking that up soon.
Her and I have been stuck home for months!! I guess that is a good thing because we were only ill during Christmas. Some sinus for us all but that is normal for us.She is doing swim therapy, OT and myofasical release.
Its been awhile but with this early spring weather I have been busy starting my tomatoes, flowers and some green peppers from heirloom organic seeds. I have been using a grow lamp on some of my starts 48 tomatoes, green peppers flowers and herbs and hydroponics on 24 plants of the tomatoes. I have all kinds that are heirloom organic seeds from all over the world.
I found some survival kitchen heirloom seeds that can do a 3/4 acre garden. I am loving this too!! Thank you again Pinterest. Tons of articles on doing an organic garden on my page on gardens http://pinterest.com/fightforliz/gardens/ If you want to start on you own organic heirloom garden then check my pins out! Have to take care of my family during this roughest time ever and this is the one thing I can do.
Its getting harder and harder for us to get by these days. Paul has had several interviews and every time we think its in the bag and NOTHING. Keeping our fingers crossed for this last one that he was sure he had after 2 interviews and a pee test with one company. Then, he was called for a 3rd and he was sure he had it . Walked in and there was 6 other applicants ugh........ much younger. Gosh. when does this end? Does this man that worked so hard for his family for so many years get a break and get a job? The stress is tearing us apart inside. It sucks getting old!!
Any way we are trying to remain positive and carry on. I am preparing for a huge growing season and plan on canning everything!! Making my girls have a canning party with me!!
Enjoy this weather!! We are trying to!!!!
"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth
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