Mayby seisure? Need HELP!

[Guest guest]

hello my name is shannon ... i had a little girl that passed away from leighs disease... she had those jerks they are called spikes they some times they can turn into seisures some times they dont ... it all depends on the eeg on the brain ... brandy also had swellin in her brain so every child is differant ... just hollar if you need to talk your friend shannon

[Guest guest]

HI everyone,

I first want to thank you all for your support it has

been wonderful. If you havent read my other posts we just found out 3

weeks ago that our daughter has Mito.She has recently been

rolling her eyes in the back of her head.She also has been taking

double breaths with a slight jerk.I was just wanting to know if I

could get some feedback. Tonight it lasted longer and she was real

still for about 3 minutes after. Thanks again!

Adrienne Francis

[Guest guest]

hi shannon , my name is jennie my son has leighs disease and sometimes his seizures get so bad. but then he just has the chorea movements. i don't understand much about this disease any info would be helpful. i get frustrated traveling back and forth to k.c. to ku for dr.s appts. it gets so hard on him and on his sisters and brother. how did you manage? i am so sorry for the loss of your daughter. i appreciate everything you are doing your courage is unbelievable. any help or advece you have i will cherish. God bless you jennieaddwillbebad@... wrote:

hello my name is shannon ... i had a little girl that passed away from leighs disease... she had those jerks they are called spikes they some times they can turn into seisures some times they dont ... it all depends on the eeg on the brain ... brandy also had swellin in her brain so every child is differant ... just hollar if you need to talk your friend shannon Please contact mito-owner with any problems or questions.

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hi shannon , i guess the one thing i want to know is how you dealt with everything? did you ever want to just scream? i have 3 other children and sometimes i don't feel like i am a good mom, partly because i am gone so much for logan. ashley and austin are mine biologically and we have adopted a 17 year old brandy. ash and austin have had to overcome some great odds too. ash is a cancer survivor and also had to have bone grafts put into both of her hips. this is her first summer being able to play some sports again. my 4 yr old austin is mildly autistic and has overcome speech delay. then there is logan who has leighs disease, i just found out i am the reason why my 3 kids have had such a tough go medically and i am battling against this. i know everyone has said its not my fault but i guess they don't know what it feels like to know i carry this gene. did you ever feel this way? i don't want to sound like i am feeling sorry for myself i just need to know the typical ?s that

most parents want to know why,how and is there anyone out there feeling the same way. thanks for your ear i don't have anyone to talk to about this. my husband has the hardest time and i have to be the strong one. again thank you for your ear. jennieJennie wrote:

hi shannon , my name is jennie my son has leighs disease and sometimes his seizures get so bad. but then he just has the chorea movements. i don't understand much about this disease any info would be helpful. i get frustrated traveling back and forth to k.c. to ku for dr.s appts. it gets so hard on him and on his sisters and brother. how did you manage? i am so sorry for the loss of your daughter. i appreciate everything you are doing your courage is unbelievable. any help or advece you have i will cherish. God bless you jennieaddwillbebad@... wrote: hello my name is shannon ... i had a little girl that passed away from leighs disease... she had those jerks they are called spikes they some times they can turn into seisures some times they dont ... it all depends on the eeg on the brain ... brandy also had swellin in her brain so every child is differant ... just hollar if you need to talk your friend shannon Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions.

[Guest guest]

GIRL DONT BLAME YOUR SELF.. yeah i know its a gene but still you cant blame your self .. i know you want to know why .. i do to but we will never know why even when we die we will never know .. but they say god will not put nothing on you .. that you can not handle ... you still have other babys dont you that you have to stay strong for ... times does get really hard and i feel for you trust me i have walked your shoes with a chld with that disease i know how hard it is and trust it can get worse just hang in there and talk to god and spend your time with your child cause you never know brandy only last six mothes eight days hers moved rapidly on her she didnt even have a chance to fight it .. YES GIRL I FEEL LIKE SCREAMING ALOT.. but i still have my eight year old son and he is healthy as an ox and know i am almost two monthes pregnant with possible twins but i am not scared my brandy was by another man and he had this problem in his family with bad blood or somthing see i was told that the moms give off the bad gene and the father was the one that gives off the good gene.. but he gave me a bad gene instead of the good one and that is how brandy got to be so sick ... some times i wish people like your self lived closer to me that way i can be a real friend and be by your side cause you need all the friends you can around you in this time ... trust me i know i have a few out there that was here through it all.... but if you need me just email me or you can call me if you can ONLY if you can my number is .. i will be praying for you and your family please write me back when you can your friend shannon

[Guest guest]

well jen .. the seisures dont really hurt the child at all ... it does make them really sleepy after words but it does not hurt them ... is your son on any medicine for the sez.... they usually start you on keppra ... is he on any contails like vitiam b or anything .. like i said though every kid is differant it is so strange .. but i cant tell you dont bother them when they are having the seisure you are suppost to let them just go through it if it get to the point where he is having them all the time more than three times a day call the doc.. brandy was up to at least 25 a day so i had to keep her asleep all the time but she was differant dont give up on that thought .. EVERY ONE IS DIFFERANT ... i live on those words but like i said you need to talk to the doc. about controling this .. its strange in adults it dont start in both limbs like kids if you notice both arms or legs will move well in adults it starts in one leg or one arm but its not hurting them that is the only good sighn about seisures .... but yeah make sure you talk to your doc.. okay .. got to go be praying for you your friend shannon

[Guest guest]

logan is on depacote,lamictal,diastan, clonodine,hydralazine,zantac,norvasc and he usually siezes 3-5 times a day. last night was really bad he seemed to have a seizure every 30 min. i called the dr. and she upped his depacote to 3 pills in the a.m. and 2 at night . i just worry that he will hurt himself during the seizure, he has bruises on his face from last night. do you have any ideas for protecting him during these? thank you for your help it is nice to know that i am not the only one out here dealing with this .God Bless

jenaddwillbebad@... wrote:

well jen .. the seisures dont really hurt the child at all ... it does make them really sleepy after words but it does not hurt them ... is your son on any medicine for the sez.... they usually start you on keppra ... is he on any contails like vitiam b or anything .. like i said though every kid is differant it is so strange .. but i cant tell you dont bother them when they are having the seisure you are suppost to let them just go through it if it get to the point where he is having them all the time more than three times a day call the doc.. brandy was up to at least 25 a day so i had to keep her asleep all the time but she was differant dont give up on that thought .. EVERY ONE IS DIFFERANT ... i live on those words but like i said you need to talk to the doc. about controling this .. its

strange in adults it dont start in both limbs like kids if you notice both arms or legs will move well in adults it starts in one leg or one arm but its not hurting them that is the only good sighn about seisures .... but yeah make sure you talk to your doc.. okay .. got to go be praying for you your friend shannon Please contact mito-owner with any problems or questions.

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Well lets see ... you can put coushins around the bed frame .. you dont want to strain them that makes it worse about the only thing i can really think of is maybe putting some gloves of some sort on his hands maybe with some cushion in them .. how is he getting brusies on his little face.. is he hitting him self or somthing hitting him on the bed .. but they say never try to hold them or touch them when they sez and i know that sounds crazy .. i know its hard not to want to hold them ... that is alot of sez meds gosh brandy was on four though so i can see that ...but yeah let me know who he got the bruises maybe we can come up with somthing to do to help him from doing that .. your friend shannon

[Guest guest]

shannon: he gets the bruises from hitting at his face and hitting the wall . when he was in the hosp. his dr. saw how he thrashed . i will try the gloves and have tried the padding but he still hits himself. i have been up now for 48 hrs because logan s seizures have gotten worse and he is real unstable . any ideas would greatly be appreciated. it seems he knows something and is clinging to me alot. i dont know what to do. i am very frustrated . thank you for writing me and thanks for the great ideas right now i will try anything . i wish i could help him more but the dr.s say sometimes they get harder and things will get worse. again thank you.your friend jennieaddwillbebad@... wrote:

Well lets see ... you can put coushins around the bed frame .. you dont want to strain them that makes it worse about the only thing i can really think of is maybe putting some gloves of some sort on his hands maybe with some cushion in them .. how is he getting brusies on his little face.. is he hitting him self or somthing hitting him on the bed .. but they say never try to hold them or touch them when they sez and i know that sounds crazy .. i know its hard not to want to hold them ... that is alot of sez meds gosh brandy was on four though so i can see that ...but yeah let me know who he got the bruises maybe we can come up with somthing to do to help him from doing that .. your friend shannon Please contact mito-owner with any problems or questions.

[Guest guest]

Maybe it is time to go to the hospital if he is only getting worse and nothing is helping. Have you talked to your docs about it recently? It can't be good for him to be having so many seizures. Hope he starts getting better soon and you are able to get some help for him for the current seizures as well as for the long-term outlook. Darla: mommy to Asenath, Zipporrah, Luke, and the gang Re: Mayby seisure? Need HELP! shannon: he gets the bruises from hitting at his face and hitting the wall . when he was in the hosp. his dr. saw how he thrashed . i will try the gloves and have tried the padding but he still hits himself. i have been up now for 48 hrs because logan s seizures have gotten worse and he is real unstable . any ideas would greatly be appreciated. it seems he knows something and is clinging to me alot. i dont know what to do. i am very frustrated . thank you for writing me and thanks for the great ideas right now i will try anything . i wish i could help him more but the dr.s say sometimes they get harder and things will get worse. again thank you.your friend jennieaddwillbebad@... wrote: Well lets see ... you can put coushins around the bed frame .. you dont want to strain them that makes it worse about the only thing i can really think of is maybe putting some gloves of some sort on his hands maybe with some cushion in them .. how is he getting brusies on his little face.. is he hitting him self or somthing hitting him on the bed .. but they say never try to hold them or touch them when they sez and i know that sounds crazy .. i know its hard not to want to hold them ... that is alot of sez meds gosh brandy was on four though so i can see that ...but yeah let me know who he got the bruises maybe we can come up with somthing to do to help him from doing that .. your friend shannon Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions. Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

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darla: i have been on the phone with the neuro and they said that there was nothing they can do that i am not doing . he just got out of the hosp. an dwas doing that there. they have upped his depacote and now we are in the waiting time for the depa cot e to build up to the higher dose. he also has distan and i have used that too. that is used for seizures over 5 min. or more tha 3 in an hour. they said his epilepsey will get worse . we are just waiting now for his hemoglobin to get high enough so we can do surgery to put the vegus nerve stimulator in. i guess i am just a worry wort with him . ihave 2 other children besides him and they have special needs too. i am sorry about my typing . i am just tired . logan is sleeping now and i am taking a much neede break. it is nice to know you are out there. any advice on how to relax as a mom . and any advice on how to help him not hurt himself while he is seizing would be great. i feel so helpless when he seizes. have you ever

felt that way? thanks your friend jennieDarla Klein wrote:

Maybe it is time to go to the hospital if he is only getting worse and nothing is helping. Have you talked to your docs about it recently? It can't be good for him to be having so many seizures. Hope he starts getting better soon and you are able to get some help for him for the current seizures as well as for the long-term outlook.

Darla: mommy to Asenath, Zipporrah, Luke, and the gang

Re: Mayby seisure? Need HELP!

shannon: he gets the bruises from hitting at his face and hitting the wall . when he was in the hosp. his dr. saw how he thrashed . i will try the gloves and have tried the padding but he still hits himself. i have been up now for 48 hrs because logan s seizures have gotten worse and he is real unstable . any ideas would greatly be appreciated. it seems he knows something and is clinging to me alot. i dont know what to do. i am very frustrated . thank you for writing me and thanks for the great ideas right now i will try anything . i wish i could help him more but the dr.s say sometimes they get harder and things will get worse. again thank you.your friend jennieaddwillbebad@... wrote: Well lets see ... you can put coushins around the bed frame .. you dont! want to strain them that makes it worse about the only thing i can really think of is maybe putting some gloves of some sort on his hands maybe with some cushion in them .. how is he getting brusies on his little face.. is he hitting him self or somthing hitting him on the bed .. but they say never try to hold them or touch them when they sez and i know that sounds crazy .. i know its hard not to want to hold them ... that is alot of sez meds gosh brandy was on four though so i can see that ...but yeah let me know who he got the bruises maybe we can come up with somthing to do to help him from doing that .. your friend shannon Please contact mito-owner with any problems or questions.

Please contact mito-owner with any problems or questions. Please contact mito-owner with any problems or questions.

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

jen i agree with honeybear... its time to go to the hospital they can control it better than we can ..i do know brandy had to be put in what they call a coma where they put him to sleep for 24 or 48 hours to calm the sez.. it is the same med. as phinbarbitol i cant spell it but it is in the same family as it ... really though you need to get them under control ... brandys was not controlable so she had to stay asleep if she was to come to she would sez to death .. so they told me the best thing is to keep her asleep.. gosh i wish i could be there so you can at least try and get some sleep i know how you feel i was up for days with brandy .. it like you have so much enery when they are sick like this .. i will keep you in my prayers god bless you both ... let me know what is going on love your friend shannon

[Guest guest]

shannon: the dr.s are just waiting to put the vegus nerve stimulator in logan. we have to get his hemoglobin up. they alsoraised his depacote to 3 tabs in the a.m.and 2 tabs in the evening . on top of that he gets his diastan if the seizure is ove r5 min or more than three in an hour. which like your daughter it puts him to sleep. the dr.s when i called them say there is nothing i am doing wrong and the wouldn't be able to do anything that i am already doing. he sleeps with his puse ox on and i have to keep track of his meds and b.p. because on top of that he has hpertension and tons of other stuff going on. i think i get frustated with this disease. its like tomorrow is his 2nd birthday and teh dr.s didn't think he would make it. i am overjoyed and blessed that God has let him stay here this long but in the back of my mind i wonder how much longer we have him , if one of these days he wil have a seizure that he doesn't come out of . but now I know i have people out here

who have or are going through the same thing as we are, it was a blessing honeybear was online that night and it has been a blessing that i have met you shannon, you guys are my life line and have given me strength when i didn't think i had any left.these past couple of weeks have really tried my patience with this disease sometimes i want to scream and i am not the one who has to live with it in my body. sometimes i wish i could take his pain away and let him be a normal 2 yr old . I don't know if you ever felt that way? but then you look around and see these kiddos with cancer and mito, and other diseases and they give me inspiration . they have the strength of innocence and then you meet parents like you who are strong and wise and full of love. you guys give me inspiration and i thankyou and honeybear. love your friend jenaddwillbebad@... wrote:

jen i agree with honeybear... its time to go to the hospital they can control it better than we can ..i do know brandy had to be put in what they call a coma where they put him to sleep for 24 or 48 hours to calm the sez.. it is the same med. as phinbarbitol i cant spell it but it is in the same family as it ... really though you need to get them under control ... brandys was not controlable so she had to stay asleep if she was to come to she would sez to death .. so they told me the best thing is to keep her asleep.. gosh i wish i could be there so you can at least try and get some sleep i know how you feel i was up for days with brandy .. it like you have so much enery when they are sick like this .. i will keep you in my prayers god bless you both ... let me know what is going on love your

friend shannon Please contact mito-owner with any problems or questions.

[Guest guest]

Jen:

I don't know if you can get in the archieves of our newspaper, The Post

Crescent; but on June 13 in the Life and Style section was a long story

about a 9 year old boy who got the inplant because he was getting so many

seizures from his epilpsy. It is an interesting story and he is doing

so well with this inplant. Thought you might enjoy reading it.

Nerenhausen

mom to Leah

Jennie wrote:

shannon: the dr.s are just waiting to put the

vegus nerve stimulator in logan. we have to get his hemoglobin up. they

alsoraised his depacote to 3 tabs in the a.m.and 2 tabs in the evening

.. on top of that he gets his diastan if the seizure is ove r5 min or more

than three in an hour. which like your daughter it puts him to sleep. the

dr.s when i called them say there is nothing i am doing wrong and the wouldn't

be able to do anything that i am already doing. he sleeps with his puse

ox on and i have to keep track of his meds and b.p. because on top of that

he has hpertension and tons of other stuff going on. i think i get frustated

with this disease. its like tomorrow is his 2nd birthday and teh dr.s didn't

think he would make it. i am overjoyed and blessed that God has let him

stay here this long but in the back of my mind i wonder how much longer

we have him , if one of these days he wil have a seizure that he doesn't

come out of . but now I know i have people o! ut here who have or

are going through the same thing as we are, it was a blessing honeybear

was online that night and it has been a blessing that i have met you shannon,

you guys are my life line and have given me strength when i didn't think

i had any left.these past couple of weeks have really tried my patience

with this disease sometimes i want to scream and i am not the one who has

to live with it in my body. sometimes i wish i could take his pain away

and let him be a normal 2 yr old . I don't know if you ever felt that way?

but then you look around and see these kiddos with cancer and mito, and

other diseases and they give me inspiration . they have the strength of

innocence and then you meet parents like you who are strong and wise and

full of love. you guys give me inspiration and i thankyou and honeybear.

love your friend jen

addwillbebad@... wrote:

jen

i agree with honeybear... its time to go to the hospital they can control

it better than we can ..i do know brandy had to be put in what they call

a coma where they put him to sleep for 24 or 48 hours to calm the sez..

it is the same med. as phinbarbitol i cant spell it but it is in the same

family as it ... really though you need to get them under control ... brandys

was not controlable so she had to stay asleep if she was to come to she

would sez to death .. so they told me the best thing is to keep her asleep..

gosh i wish i could be there so you can at least try and get some sleep

i know how you feel i was up for days with brandy .. it like you have so

much enery when they are sick like this .. i will keep you in my prayers

god bless you both ... let me know what is going on love ! your friend

shannon

Please contact mito-owner

with any problems or questions.

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lisa i would love to get a copy of that article maybe you can e-mail me of where i can get this article my email is jenniecarter@... thanks jen logans mom Sorensen wrote:

Jen:I don't know if you can get in the archieves of our newspaper, The PostCrescent; but on June 13 in the Life and Style section was a long storyabout a 9 year old boy who got the inplant because he was getting somany seizures from his epilpsy. It is an interesting story and he isdoing so well with this inplant. Thought you might enjoy reading it. Nerenhausenmom to LeahJennie wrote:> shannon: the dr.s are just waiting to put the vegus nerve stimulator> in logan. we have to get his hemoglobin up. they alsoraised his> depacote to 3 tabs in the a.m.and 2 tabs in the evening . on top of> that he gets his diastan if the seizure is ove r5 min or more than> three in an hour. which like your daughter it puts him to sleep. the> dr.s when i called them say there is nothing i am doing wrong and

the> wouldn't be able to do anything that i am already doing. he sleeps> with his puse ox on and i have to keep track of his meds and b.p.> because on top of that he has hpertension and tons of other stuff> going on. i think i get frustated with this disease. its like tomorrow> is his 2nd birthday and teh dr.s didn't think he would make it. i am> overjoyed and blessed that God has let him stay here this long but in> the back of my mind i wonder how much longer we have him , if one of> these days he wil have a seizure that he doesn't come out of . but> now I know i have people o! ut here who have or are going through the> same thing as we are, it was a blessing honeybear was online that> night and it has been a blessing that i have met you shannon, you guys> are my life line and have given me strength when i didn't think i had> any left.these past couple of weeks have really tried my patience

with> this disease sometimes i want to scream and i am not the one who has> to live with it in my body. sometimes i wish i could take his pain> away and let him be a normal 2 yr old . I don't know if you ever felt> that way? but then you look around and see these kiddos with cancer> and mito, and other diseases and they give me inspiration . they have> the strength of innocence and then you meet parents like you who are> strong and wise and full of love. you guys give me inspiration and i> thankyou and honeybear. love your friend jen>> addwillbebad@... wrote:>> jen i agree with honeybear... its time to go to the hospital> they can control it better than we can ..i do know brandy> had to be put in what they call a coma where they put him to> sleep for 24 or 48 hours to calm the sez.. it is the same> med. as phinbarbitol i cant spell it but it is in the same>

family as it ... really though you need to get them under> control ... brandys was not controlable so she had to stay> asleep if she was to come to she would sez to death .. so> they told me the best thing is to keep her asleep.. gosh i> wish i could be there so you can at least try and get some> sleep i know how you feel i was up for days with brandy ..> it like you have so much enery when they are sick like this> .. i will keep you in my prayers god bless you both ... let> me know what is going on love ! your friend shannon>> Please contact mito-owner with any problems> or questions.>>>> Please contact mito-owner with any problems or> questions.>>>

[Guest guest]

hey jen sorry it took me so long to write back i have had some bad morning sickness but it lastes all day .. its killing me and i am only two monthes so far .. i go to the doc today and hear the baby for the first time i am so excited about it .. how is our little one doing i hope he is better know i pray for you all alot... let me know how things are okay .. god bless love shannon

[Guest guest]

well i am due in jan.. i am scared to death even though this is not by the same one brandy was by so hopefully things will be alot better.. i am going to send you some pics of me and my family hope you can do the same my email address is addwillbebad@... and my home address is 1211 porter rd. sadieville ky 40370 and my full name is shannon tracy ... know you send me yours so i can write and send you and logan things to that is only fair .. i am sorry to hear that you cant have no more kids .. dont feel bad this has to be my last one to due to this is my third cesetion and i have had two hernias in my pevic area so yeah it sucks.. well i am glad to hear our little fellow is doing good today .. dont listen to them docs they arent always right you know we are the ones that keep them inform about this awful disease thats how they know so much is cause we tell them what is going on with our children so dont let them upset you okay... just keep the faith and look towards god and he will see you through and what is meant to be is meant to be remember they said logan would not make til his first or second birthday well quess what they was wrong .. babies have more strength then we will ever have .. well i am going to send you some pics of my family i hope you enjoy them and i will put your email address in my book ..love ya girl and hang in there ... love shannon

[Guest guest]

shannon: sorry about your morning sickness. i know what that is like. how are u doing? congratulations i am so happy when are u due? please send me a picture. logan is doing okay. we went to ku tues. and had some good news logans bleeding time was normal,but they are afraid his liver is damaged and we are doing blood work on that. also he is getting put on some more sez. meds and waiting to do surg for the vegal nerve stimulator. also we have to go in for another ct scan this time of the sinul cavities. he will have to have surg. on his sinul cav. they said if logan makes it another yr, wewill be blessed his atrophy of the brain is getting worse they say it will turn him into a vegtable. i am not wanting to think about this , but they have asked me to get prepared and to think aboout what i want to do . dr gilmore is worried we are trying to make things more comfortable for him,at times his pain level is so bad he is up all night and day crying owowowow. but like today he

is playing and having a great time. i just pray and hope they are all wrong.

back to the good news i am so glad to hear your pregnant i would love your email address and home address so i can send u a little something. i can't have any more do to i had to have a hysterectomy do to cervicle cancer so i love to spoil my friends who are having babies . my email address is jenniecarter@...

your friend jennieaddwillbebad@... wrote:

hey jen sorry it took me so long to write back i have had some bad morning sickness but it lastes all day .. its killing me and i am only two monthes so far .. i go to the doc today and hear the baby for the first time i am so excited about it .. how is our little one doing i hope he is better know i pray for you all alot... let me know how things are okay .. god bless love shannon Please contact mito-owner with any problems or questions.

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shannon i love the pics i saved them my address is604 n 14th marysville ks 66508.

i am so glad to have a friend like you. i know not to listen to them. they seem to give u the worst news possible and funny thing is our hematologist has never heard of this disease. your babies are beautiful and this one will be just fine. I am going I am sending u pics of my babies lu ya jen

p.s sorry about my typing i failed typing in highschool and spelling hahahahahahahahahah addwillbebad@... wrote:

well i am due in jan.. i am scared to death even though this is not by the same one brandy was by so hopefully things will be alot better.. i am going to send you some pics of me and my family hope you can do the same my email address is addwillbebad@... and my home address is 1211 porter rd. sadieville ky 40370 and my full name is shannon tracy ... know you send me yours so i can write and send you and logan things to that is only fair .. i am sorry to hear that you cant have no more kids .. dont feel bad this has to be my last one to due to this is my third cesetion and i have had two hernias in my pevic area so yeah it sucks.. well i am glad to hear our little fellow is doing good today .. dont listen to them docs they arent always right you know we are the ones that keep them inform about

this awful disease thats how they know so much is cause we tell them what is going on with our children so dont let them upset you okay... just keep the faith and look towards god and he will see you through and what is meant to be is meant to be remember they said logan would not make til his first or second birthday well quess what they was wrong .. babies have more strength then we will ever have .. well i am going to send you some pics of my family i hope you enjoy them and i will put your email address in my book ..love ya girl and hang in there ... love shannon Please contact mito-owner with any problems or questions.