There was a story on the CBS Early Show on the National Epilepsy Foundation Website being hacked to display images that may invoke a seizure in a person that has photosensitive epilepsy.
This is the first known attempt in which a website was hacked in an effort to cause a person physical harm. Foundation officials are working with investigators.
Dr. St. Louis from the University of Iowa was featured in the piece, here is some info from CBS News
http://www.cbsnews.com/sections/i_video/main500251.shtml?id=3981552n&channel=/sections/earlyshow/videoplayer500202.shtml
Monday, March 31, 2008
Sunday, January 13, 2008
Isotopes and Reflux and Hives! Oh My!
Grace has been having some ongoing problems with keeping her formula in. We have been venting her for twenty some minutes before feeding her getting all sort of gunk out of her stomach, sometimes really mucusey stuff and other times not so much. It seemed to start when she had a little cold back in December. After much effort we finally got into see Dr. Slovan, Grace’s GI doctor.
Grace has an isotope barium test once again she had a couple back in the late summer and fall of 2006 to test for reflux. Grace went off of Prilosec back in August when she started the Ketogenic Diet mostly in an effort to reduce the carbs she was taking in and she was on a relatively low dose so it was presumed that it would have little effect on her. The past month and half have proven otherwise and her reflux has come back, her fundoplication defiantly helps with it but it looks like she will need some medication.
Grace was started on Friday on some Prevacid, On Saturday after her second dose Grace started crying and could not be contented, she was itching her ears and her faces was turning red. Joy quickly notices the Grace was breaking out in hives all over her body. We called the pediatrician they could see her which was great news otherwise we would have had no other option be the ER, and every hospital in Des Moines is already at capacity so there would most likely be a wait. All in all twenty minutes probably pass by from the initial onset to when Grace was given a shot of adrenalin and she instantly started looking better. We are sort of like a mini-first responder team, I am thinking about getting an ambulance siren installed in the Impala.
Grace had a breathing treatment as well at the clinic as she was sounding a little rasping which she didn’t until after she broke out.
We can only conclude that Grace is allergic to Prevacid, she has started a five day course of Prevacid (steroid) to help. Rather than trying to push her on another drug we will wait until Monday before determining our next course of action for her reflux.
Grace has an isotope barium test once again she had a couple back in the late summer and fall of 2006 to test for reflux. Grace went off of Prilosec back in August when she started the Ketogenic Diet mostly in an effort to reduce the carbs she was taking in and she was on a relatively low dose so it was presumed that it would have little effect on her. The past month and half have proven otherwise and her reflux has come back, her fundoplication defiantly helps with it but it looks like she will need some medication.
Grace was started on Friday on some Prevacid, On Saturday after her second dose Grace started crying and could not be contented, she was itching her ears and her faces was turning red. Joy quickly notices the Grace was breaking out in hives all over her body. We called the pediatrician they could see her which was great news otherwise we would have had no other option be the ER, and every hospital in Des Moines is already at capacity so there would most likely be a wait. All in all twenty minutes probably pass by from the initial onset to when Grace was given a shot of adrenalin and she instantly started looking better. We are sort of like a mini-first responder team, I am thinking about getting an ambulance siren installed in the Impala.
Grace had a breathing treatment as well at the clinic as she was sounding a little rasping which she didn’t until after she broke out.
We can only conclude that Grace is allergic to Prevacid, she has started a five day course of Prevacid (steroid) to help. Rather than trying to push her on another drug we will wait until Monday before determining our next course of action for her reflux.
Thursday, January 03, 2008
the caucuses, rollercoasters, and almost 2
The caucuses are in full swing.... Kevin is there... his resolutions about funding waiver programs firmly in hand. He has become such a champion for Grace, and for other families. I am constantly in awe of his devotion to families... and as for Grace... He is so proud of her and wants everything possible for her.
Lately we've been on another emotional rollercoaster. There was a possibility that Grace could be enrolled in a clinical trial - this will not be the case. Her taking the drug Felbatol actually ended up being the last straw... the drug company doing the study did not want to have her on Felbatol due to potential side effects with the study drug. Kevin and I had begun having conversations about whether or not we would take her off Felbatol - to not have to make that decision was a relief. However there was a sadness and anger in having an opportunity to do all that we can for Grace being snatched away. Kevin and I said when all this began that we would do what we could....anything we could..... always -
Currently Grace is snug on Hoover's pad with him.... he is ignoring her. She'll be 2 soon. As I think about this its impossible for me to imagine. This beautiful girl... with golden curls...who hasn't said a word.... is wise, tough, gentle, and her own person. Serving her as her mother has turned out to be so ...... I just don't know if I have the words. Perhaps what I mean .... is that being Grace's mom is a privelege... a defining role...more than I could ever have imagined. I want her so badly to know how much I love her ---
She's doing great things.... hanging out on her hands and knees... rocking like she could crawl soon.... mad when she can't get where she wants..... rolling about the house to get where she wants... she just is not giving up.
It's time for me to put her in her pajamas... get her meds... snuggle up for our goodnight snuggle and sing her our goodnight song.
Goodnight Gracie. Goodnight Gracie. Goodnight Gracie. Your daddy and I love you.
Sleep well Gracie. Sleep well Gracie. Sleep well Gracie. Morning will be here soon.
It's simple... but I think she knows it.
Lately we've been on another emotional rollercoaster. There was a possibility that Grace could be enrolled in a clinical trial - this will not be the case. Her taking the drug Felbatol actually ended up being the last straw... the drug company doing the study did not want to have her on Felbatol due to potential side effects with the study drug. Kevin and I had begun having conversations about whether or not we would take her off Felbatol - to not have to make that decision was a relief. However there was a sadness and anger in having an opportunity to do all that we can for Grace being snatched away. Kevin and I said when all this began that we would do what we could....anything we could..... always -
Currently Grace is snug on Hoover's pad with him.... he is ignoring her. She'll be 2 soon. As I think about this its impossible for me to imagine. This beautiful girl... with golden curls...who hasn't said a word.... is wise, tough, gentle, and her own person. Serving her as her mother has turned out to be so ...... I just don't know if I have the words. Perhaps what I mean .... is that being Grace's mom is a privelege... a defining role...more than I could ever have imagined. I want her so badly to know how much I love her ---
She's doing great things.... hanging out on her hands and knees... rocking like she could crawl soon.... mad when she can't get where she wants..... rolling about the house to get where she wants... she just is not giving up.
It's time for me to put her in her pajamas... get her meds... snuggle up for our goodnight snuggle and sing her our goodnight song.
Goodnight Gracie. Goodnight Gracie. Goodnight Gracie. Your daddy and I love you.
Sleep well Gracie. Sleep well Gracie. Sleep well Gracie. Morning will be here soon.
It's simple... but I think she knows it.
Wednesday, November 21, 2007
Friday, November 16, 2007
Squirm
Grace has learned to squirm, not only can she squirm but she can flail handfuls of slobber as she continues to flip, roll, twist, wiggle, lean, and flop.
Grace no longer likes to just sit and hang out; she is standing like a champ. Her gait trainer is working wonders! She moves around so well that we are desperately trying to figure would what can go and what should stay in our house to give Grace more room to travel. Her gait trainer is like walker except it forces Grace to stand and encourages more natural positioning of her feet to develop her walk/gait. The deck base of it covers apx two and a half feet by two feet, so her turning radius it rather large. It looks like we will be making the supreme sacrifice and getting an HDTV and mounting it on the wall to get rid of the large TV cabinet.
Tomorrow morning we shall be up bright and early heading to Julie’s for Grace’s 5:30 respite rendezvous and then off to pike up Martha and possibly Suz and head off to Omaha for the Epilepsy Foundation’s HOPE Conference. While Joy and I are learning, meeting people, and making connections, Grace will be practicing her ballet routine with Otis in Jessica’s room.
Grace no longer likes to just sit and hang out; she is standing like a champ. Her gait trainer is working wonders! She moves around so well that we are desperately trying to figure would what can go and what should stay in our house to give Grace more room to travel. Her gait trainer is like walker except it forces Grace to stand and encourages more natural positioning of her feet to develop her walk/gait. The deck base of it covers apx two and a half feet by two feet, so her turning radius it rather large. It looks like we will be making the supreme sacrifice and getting an HDTV and mounting it on the wall to get rid of the large TV cabinet.
Tomorrow morning we shall be up bright and early heading to Julie’s for Grace’s 5:30 respite rendezvous and then off to pike up Martha and possibly Suz and head off to Omaha for the Epilepsy Foundation’s HOPE Conference. While Joy and I are learning, meeting people, and making connections, Grace will be practicing her ballet routine with Otis in Jessica’s room.
Wednesday, October 31, 2007
Tuesday, October 23, 2007
Addison, Zoe, and Gavin
I have the privelege of friendship with the parents of the children I've listed in the title of this entry. Addison and Zoe are in Grace's age zone. Try as I might it is hard not to compare. Gavin is a new guy to the world - I've seen him do things in his short life that Grace never really did. Addison I saw eat cheetos. She used her fingers in ways that are so complex, she points at things with only her index finger, and ate cheeto after cheeto as fast as her mom could give them to her. It was marvelous.
We are wonderfully made -- all of us.
Today someone pointed out to me that Grace is almost two. I would take her to the infant room at church, while several of her peers have moved onto the toddler room. What room is better for her, what room will meet her needs? Will the older kids make fun of her? How will our friends explain to their children about Grace? Do they need to? What about that kids that we don't know their parents? What will they say when their kids come home and ask them about the girl with the tube in her stomach or the girl who made funny movements.
As Addison, Zoe,and Gavin grow I pray for their understanding, for their acceptance of Grace. For Jenna and Miles, for Nathan, for Joe, all kids that I know. I also pray for those who don't yet know Grace and will be the characters that make up the stories of her life. I also pray that Grace will know her part and do it well in the lives of Addison, Zoe, and Gavin - Jenna, Miles, Nathan and Joe.....
We are wonderfully made -- all of us.
Today someone pointed out to me that Grace is almost two. I would take her to the infant room at church, while several of her peers have moved onto the toddler room. What room is better for her, what room will meet her needs? Will the older kids make fun of her? How will our friends explain to their children about Grace? Do they need to? What about that kids that we don't know their parents? What will they say when their kids come home and ask them about the girl with the tube in her stomach or the girl who made funny movements.
As Addison, Zoe,and Gavin grow I pray for their understanding, for their acceptance of Grace. For Jenna and Miles, for Nathan, for Joe, all kids that I know. I also pray for those who don't yet know Grace and will be the characters that make up the stories of her life. I also pray that Grace will know her part and do it well in the lives of Addison, Zoe, and Gavin - Jenna, Miles, Nathan and Joe.....
Thursday, October 18, 2007
Band From TV tonight on the Tonight Show
Please tune in to see Greg Grunberg on NBC's 'The Tonight Show with Jay Leno" on Friday, October 19 (11:35 EDT/10:35 CDT) as he promotes epilepsy awareness and Band From TV's ( http://bandfromtv.org/) new CD release. As many of you know, Band From TV was created to provide funding and resources for several incredibly worthwhile charities around the world. Greg, the leader of the band, chose the Epilepsy Foundation as his charity of choice in support of his son, Jake.
Thursday, October 11, 2007
Straw Wrappers
It is so hard for Kevin and I to reach out sometimes -- we'd prefer to just do this all ourselves-- never show that we have weaknesses-- never show that we feel discouraged-- but I feel often those times are when I choose to write.
Tonight I want to tell you a happy story. We had Grace out to eat with us earlier this week, and as we ate she played with straw wrappers and napkins. When we got up to leave we cleaned the shredded ones up off of the floor. Our little girl had made quite a mess! We were thrilled!
Grace is doing well. She currently has a cold and I think that this teething thing (and all the corresponding drool) will never end... but she is sassy, stubborn - playing, squealing, smiling, playing with her musical dolphins in the tub, and giving so many wonderful kisses.
She is amazing!
Tonight I want to tell you a happy story. We had Grace out to eat with us earlier this week, and as we ate she played with straw wrappers and napkins. When we got up to leave we cleaned the shredded ones up off of the floor. Our little girl had made quite a mess! We were thrilled!
Grace is doing well. She currently has a cold and I think that this teething thing (and all the corresponding drool) will never end... but she is sassy, stubborn - playing, squealing, smiling, playing with her musical dolphins in the tub, and giving so many wonderful kisses.
She is amazing!
Wednesday, September 26, 2007
Ode to Kevin
I've been in LaCrosse this week.... man I love this place.
Kevin has been home with Grace, and is just phenomenal with her. A call came in today with the opportunity for him to go and tell our story in order to help others. He jumped right in the car so that he could help. I love him. Grace is a lucky girl
Kevin has been home with Grace, and is just phenomenal with her. A call came in today with the opportunity for him to go and tell our story in order to help others. He jumped right in the car so that he could help. I love him. Grace is a lucky girl
Monday, September 17, 2007
Causing a Ruckus
In church on Sunday Grace and I had to sit in the very, very, back. She is again making the pbbbttthttt noise and the spit just flies! Bob, the janitor at church walked by and told me that Grace looked healthy to him, but he hoped that soon she'd be running around and raising a ruckus --- He gets it!
Our life seems to have settled into a sort of routine.... the ketogenic diet is very strict - tonight we went from store to store to store to find ketogenic friendly diaper wipes. My husband, bless his heart, ended up just coming home and ordering us 5 cases on-line. How crazy is that?
Having a nurse at the house is so wonderfully refreshing. We are no longer getting calls that scare us at work..... Hoover has found that he can beg and get extra treats, and both Megan and Lisa seem to love Grace very much. And though it is odd to have a medical chart in the kitchen, and cumbersome to have a doctor's order for the day to day changes that arise, there is a certain peace.
Joy
Our life seems to have settled into a sort of routine.... the ketogenic diet is very strict - tonight we went from store to store to store to find ketogenic friendly diaper wipes. My husband, bless his heart, ended up just coming home and ordering us 5 cases on-line. How crazy is that?
Having a nurse at the house is so wonderfully refreshing. We are no longer getting calls that scare us at work..... Hoover has found that he can beg and get extra treats, and both Megan and Lisa seem to love Grace very much. And though it is odd to have a medical chart in the kitchen, and cumbersome to have a doctor's order for the day to day changes that arise, there is a certain peace.
Joy
Saturday, September 01, 2007
Home is where the heart is?
Home is where the heart is...... I'm not sure that's true today. My heart has been in Des Moines and St. Paul the last two weeks... split between the blonde-haired blue-eyed man that I love and the little blonde-haired blue-eyed girl we had together. How can home be in two places?
Home is where your family is. Where the basset hound barks at the mailman, where the next store neighbor grins as she works happily in her yard, where your little girl smiles at ceiling fans, where your husband doesn't clean off the stove top after he cooks, and makes you laugh with gusto because of something funny he said.
If the last two weeks have taught me nothing else..... it has taught me that sometimes there isn't a whole lot of difference between what is simple and what is complex.
1/16th of a teaspoon of salt allowed us to come home....... 1/16th of a teaspoon of salt assures that Grace's body will remain healthy as it learns to take energy from fat...... 1/16th of a teaspoon of salt means that one of us has to stay up later in order to make sure that Grace gets that salt..... 1/16th of a teaspoon of salt led to the purchase of new measuring spoons.... 1/16th of a teaspoon of salt may allow our daughter to smile more, laugh, learn..... 1/16th of a teaspoon of salt...... it's unreal to me even now as I sit here knowing that most likely I am failing miserably at getting my point across..... but I ask for your patience and want you to know that it makes sense to me!
Home is where your family is. Where the basset hound barks at the mailman, where the next store neighbor grins as she works happily in her yard, where your little girl smiles at ceiling fans, where your husband doesn't clean off the stove top after he cooks, and makes you laugh with gusto because of something funny he said.
If the last two weeks have taught me nothing else..... it has taught me that sometimes there isn't a whole lot of difference between what is simple and what is complex.
1/16th of a teaspoon of salt allowed us to come home....... 1/16th of a teaspoon of salt assures that Grace's body will remain healthy as it learns to take energy from fat...... 1/16th of a teaspoon of salt means that one of us has to stay up later in order to make sure that Grace gets that salt..... 1/16th of a teaspoon of salt led to the purchase of new measuring spoons.... 1/16th of a teaspoon of salt may allow our daughter to smile more, laugh, learn..... 1/16th of a teaspoon of salt...... it's unreal to me even now as I sit here knowing that most likely I am failing miserably at getting my point across..... but I ask for your patience and want you to know that it makes sense to me!
Friday, August 31, 2007
Thursday, August 30, 2007
Tomorrow
Tomorrow tomorrow - we're going home tomorrow - it's only a day a way.
Grace has slept most of the day away -- Kevin and I have found that when we push too hard, or too much is going on..... Grace has to crash. She did so big time today. I expect her to continue crashing until we can get her home and away from all the poking and the bed that isn't hers.
I need to keep her moving tonight - Dr. Doescher wants to see her out of bed and active. All her numbers looked good this morning and as long as her numbers stay ok tomorrow morning he says we could be out of here by noon.
Grace has slept most of the day away -- Kevin and I have found that when we push too hard, or too much is going on..... Grace has to crash. She did so big time today. I expect her to continue crashing until we can get her home and away from all the poking and the bed that isn't hers.
I need to keep her moving tonight - Dr. Doescher wants to see her out of bed and active. All her numbers looked good this morning and as long as her numbers stay ok tomorrow morning he says we could be out of here by noon.
Salt - 1/16th of a teaspoon
So -- We are still here! Grace's blood sugars are resolved, she is now only being poked 2 times a day (rather than every three hours). That's the good news. The bad news is that her sodium is low. The doctor looked at me yesterday and said that if we can't get her sodium figured out - this diet will no longer be an option for Grace. The mother lion in me swelled up and thought -- well then you better figure this thing out! Outside I maintained my calm and told him that we really want to do this and will do what we can to give the diet a real shot. He hemmed and hawed about if she needed 10% more salt or 20%. I thought he'd landed at 20 -- turned out it was ten %. They added 1/16th of a teaspoon of salt to her feeding overnight. They had to poke her three times this morning to get the blood we needed to run the test again.
We were also visited by an endocrinologist yesterday who ordered a few more tests to see if there is other things we need to be looking at as long as we are here--and as we fine tune the kinks! she'll be back today.
Being away from home this long is hard. My dad has been on stand by this whole week waiting for us to come home so that he can take care of Grace so I can go back to work. We have a nurse starting in our own house with Grace on Tuesday. Have we told you all that? That gives me only a few days to prepare for that and for Kevin and I to work out how the home front will be different with the diet and a nurse. I thought I'd have a week.
Sorry this message is getting long and Grace appears to be getting bored beside me.
We were also visited by an endocrinologist yesterday who ordered a few more tests to see if there is other things we need to be looking at as long as we are here--and as we fine tune the kinks! she'll be back today.
Being away from home this long is hard. My dad has been on stand by this whole week waiting for us to come home so that he can take care of Grace so I can go back to work. We have a nurse starting in our own house with Grace on Tuesday. Have we told you all that? That gives me only a few days to prepare for that and for Kevin and I to work out how the home front will be different with the diet and a nurse. I thought I'd have a week.
Sorry this message is getting long and Grace appears to be getting bored beside me.
Tuesday, August 28, 2007
She's one tough girl!
The doctors and Allison(our dietician) have made some changes. They don't feel that Grace's body was ready for the ratio of fat to carb to protein. Unfortunately this means that we are still in St. Paul. Sunday night Grace didn't sleep well, yesterday she slept most of the day. She just wanted to be held. I stayed with her last night- just couldn't bear to leave. She slept well and she woke up this morning with a few things to say.... and man did she scream when they poked her for the third time this morning trying to get some blood to check her levels - again.
I was told by our nurses that Grace is one tough girl. I had to agree.
We stood in her window this morning watching the cars driving by - she turned back to me at one point, lifted her arm to be held. And as I picked her up she looked me right in the eye.... and she just gave me this look that said... I know this is rough.... but we have to try -- she rested her head on my shoulder for just a moment and then tried to squirm out of my arms to get back to her car watching. ooooh I love her!
I can't wait to get her home, into her own bed, into her exersaucer - to sit in her chair with Hoover as her foot rest, and to hear that little clicking noise she makes to get to sleep through the baby monitor.
The earliest we will leave here is tomorrow - it's entirely possible it will be more like Friday. More later.
Joy
I was told by our nurses that Grace is one tough girl. I had to agree.
We stood in her window this morning watching the cars driving by - she turned back to me at one point, lifted her arm to be held. And as I picked her up she looked me right in the eye.... and she just gave me this look that said... I know this is rough.... but we have to try -- she rested her head on my shoulder for just a moment and then tried to squirm out of my arms to get back to her car watching. ooooh I love her!
I can't wait to get her home, into her own bed, into her exersaucer - to sit in her chair with Hoover as her foot rest, and to hear that little clicking noise she makes to get to sleep through the baby monitor.
The earliest we will leave here is tomorrow - it's entirely possible it will be more like Friday. More later.
Joy
Sunday, August 26, 2007
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