Guest guest Posted April 23, 2005 Report Share Posted April 23, 2005 I've been thinking that it would be nice if we all re-introduced ourselves. There are quite a few new families in the group and it would be nice to have all the pertinent info on a family in one e-mail, I think it would make it easier to remember who's who that way. Plus, I love seeing photos of the mito kids. And wouldn't it be nice if we had photos of ourselves too, so we can see who we're talking to? Anyway, just a thought, anyone who wants to and has a free moment is welcome to send an e-mail. So I'll go first. I'm Stacey Fleming. My husband Ken and I have 3 children. , 12, who is healthy and plays piano. Kelsey, 11, is also healthy. She is a big help with Sheldon and plays the flute. Sheldon is 3 1/2 and has PDH Deficiency (a mitochondrial disorder). Sheldon is nonverbal, has developmental delays, reflux, is delayed in all areas, sensory integration problems, pronated feet, low muscle tone, esophageal dysmotility, I don't remember what else right now. He was in the hospital for 8 days earlier this month (over Easter ) with a virus so we're still recovering from that. Every free moment I have right now is spent trying to get our house ready to sell, we have to sell it because we can't afford it on one income and I can't work because I'm home caring for Sheldon. Oh yeah, we live in Malta, NY. I'll attach one photo but I know not everyone receives photos with the e-mails so I've put updated photos in the photos area on the yahoo mito group site under 'Sheldon and Family.' I don't know what I'd do without this group, it is so good to be able to talk with others who are going through the same things. Stacey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2005 Report Share Posted April 23, 2005 Stacey!! Very good idea!!!!! My name is Tamara! I am 32 years old and have been married for 12 years, to a wonderful man named Steve. I was married into a immediate family. My husband had a 3 year old son name Stevie!!! Who is now 15, and a super big brother. I have a son name Dakota who is 11(who shows soft signs of Mito, yet never tested) Joey who is my sweet little angel, just turned 6 years old a month ago. Joey has been dx. unspecific Mito. Through blood and urine work(high lactic acids) And dx. through a muscle biopsy. No complex dx. at this time. Joey was born very healthy...we thought. Pregnacy went pretty well. Had a normal vaginal birth. We thought everything was great!!!! At the age of 5 weeks old, Joey started breathing very funny, mostly while sleeping. I called the dr., he said not to worry about it. Some newborns just breath funny. Everyday from then on that week, his breathing kept getting worse. At our 6 week check up, we walked in or Peds. office. He took one look at Joey and rushed us to a Pulmo dr. And from there rushed to the hospital. We were scared to death, had no ides what was wrong. Laryngiamalacia (sp?) was our dx. Floppy aiway!!! We went home on a apnea monitor. Our healthy baby was not so healthy any more. It seemed like every week it was somethig new. He started choking on his milk, so we had to thicken all of his liguids. He started having seveare acid reflux. Was very behind on ALL of his large and small motor skills. Finally walked at 19 months, yet would tip toe and fall every few steps. We started therepy, OT, PT and Speech. Yet still not knowing what was wrong. Yet they sure were running lots of test. Not finding anything. He started to developeTactile issue, or maybe we just started noticing them. We got a dx. of Aspergers Sydrome. Yet Joey kept coming up with more issues that did not fit with Aspergers. We were having issues with heat, just not know what to do. Dr.s were just clueless!!! Joey's low muscle tone was really effecting him and keeping him from alot of stuff. Therepy really was not helping. Finally at age three, we found a Neuro who would do a muscle biopsy. After that very long wait, we finally got our dx. Unspecific Mito!! Of course we still do not understand why, and what Joey's future holds. Yet you have to live every day at a time. Do LOTS of praying!!! LOTS!!! Joey is still having lots a issues at age 6. Right now we are on a Event monitor(only 5 more days). Which has showed us that he has Super Ventracle Tachycardia. Which I guess it could be very seriuos. We find our self very lucky!!! Just lucky that we still have his around!!! And cherish every single day!!! He is my little miracle, and the tuffet little guy you will ever meet. Thanks for listening!! Tamara Stacey Fleming wrote: I've been thinking that it would be nice if we all re-introduced ourselves. There are quite a few new families in the group and it would be nice to have all the pertinent info on a family in one e-mail, I think it would make it easier to remember who's who that way. Plus, I love seeing photos of the mito kids. And wouldn't it be nice if we had photos of ourselves too, so we can see who we're talking to?Anyway, just a thought, anyone who wants to and has a free moment is welcome to send an e-mail.So I'll go first. I'm Stacey Fleming. My husband Ken and I have 3 children. , 12, who is healthy and plays piano. Kelsey, 11, is also healthy. She is a big help with Sheldon and plays the flute.Sheldon is 3 1/2 and has PDH Deficiency (a mitochondrial disorder). Sheldon is nonverbal, has developmental delays, reflux, is delayed in all areas, sensory integration problems, pronated feet, low muscle tone, esophageal dysmotility, I don't remember what else right now. He was in the hospital for 8 days earlier this month (over Easter ) with a virus so we're still recovering from that.Every free moment I have right now is spent trying to get our house ready to sell, we have to sell it because we can't afford it on one income and I can't work because I'm home caring for Sheldon. Oh yeah, we live in Malta, NY.I'll attach one photo but I know not everyone receives photos with the e-mails so I've put updated photos in the photos area on the yahoo mito group site under 'Sheldon and Family.'I don't know what I'd do without this group, it is so good to be able to talk with others who are going through the same things.Stacey Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2005 Report Share Posted April 23, 2005 I don't post very often but I read through all of yours every day. My name is and my husband is Steve. We have a beautiful 4 year old daughter, Abbey. Abbey was diagnosed just after her second birthday with Complex 1. Besides occasional seizures, Abbey has very little " medical " issues but she is significantly delayed in all areas. She is non-verbal and has difficulties in fine motor skills. Her gross motor skills are getting better by the day and cognitively she seems to be at the level of a two year old. She is in preschool and loves to go to school! She'll be five in August and I am finding the older she gets the harder it is getting. We're in the process of moving to England to be near Steve's parents, who are unable to fly, and the rest of his family. I am really looking forward to it but like a big baby I am going to miss my Mom!!! So any of you in the UK - get in touch! I'll need as many friends as I can get! I send out prayers for you all each day. May God Bless, > I've been thinking that it would be nice if we all re-introduced > ourselves. There are quite a few new families in the group and it > would be nice to have all the pertinent info on a family in one > e-mail, I think it would make it easier to remember who's who that > way. Plus, I love seeing photos of the mito kids. And wouldn't it be > nice if we had photos of ourselves too, so we can see who we're > talking to? > > Anyway, just a thought, anyone who wants to and has a free moment is > welcome to send an e-mail. > > So I'll go first. I'm Stacey Fleming. My husband Ken and I have 3 > children. , 12, who is healthy and plays piano. Kelsey, 11, is > also healthy. She is a big help with Sheldon and plays the flute. > > Sheldon is 3 1/2 and has PDH Deficiency (a mitochondrial disorder). > Sheldon is nonverbal, has developmental delays, reflux, is delayed in > all areas, sensory integration problems, pronated feet, low muscle > tone, esophageal dysmotility, I don't remember what else right now. > He was in the hospital for 8 days earlier this month (over Easter > ) with a virus so we're still recovering from that. > > Every free moment I have right now is spent trying to get our house > ready to sell, we have to sell it because we can't afford it on one > income and I can't work because I'm home caring for Sheldon. Oh yeah, > we live in Malta, NY. > > I'll attach one photo but I know not everyone receives photos with > the e-mails so I've put updated photos in the photos area on the > yahoo mito group site under 'Sheldon and Family.' > > I don't know what I'd do without this group, it is so good to be able > to talk with others who are going through the same things. > > Stacey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2005 Report Share Posted April 23, 2005 I too think it is a great idea... Hi most of you already know me..My name is Ann and I am a mom with mito. We have a son, who is 4 1/2-going on 10 it seems. has very few symptoms now, which makes our concern a lot less.... It has been a little over two months since his last seizure, his feet aren't turning inward as much, speech is wonderful and he seems to be seeing better...Although we are going into see about his vision in his eye.... I was diagnosed in 2003, after many years of testing. A muscle biopsy was how it was discovered, initial diagnosis Mitochondrial Myopathy...doctors still seem to think I have MELAS...Mitochondrial Encephalopathy Lactic Acidosis Stroke...since I have all the symptoms... In May 2004, I lost our baby " Kate" in my second trimester... Who knows if is a mito angel? Perhaps her tiny fragile life was spared and called to welcome others home... I am a stay at home mom, freelance writer/author in my spare time...I am a devout Christian and believe God's promises...One day I will see 's smiling face in Heaven, united again. Have a wonderful week. Ann Planning on attending St Lious conference... --- Stacey Fleming wrote:> I've been thinking that it would be nice if we all> re-introduced > ourselves. There are quite a few new families in the> group and it > would be nice to have all the pertinent info on a> family in one > e-mail, I think it would make it easier to remember> who's who that > way. Plus, I love seeing photos of the mito kids.> And wouldn't it be > nice if we had photos of ourselves too, so we can> see who we're > talking to?> > Anyway, just a thought, anyone who wants to and has> a free moment is > welcome to send an e-mail.> > So I'll go first. I'm Stacey Fleming. My husband Ken> and I have 3 > children. , 12, who is healthy and plays> piano. Kelsey, 11, is > also healthy. She is a big help with Sheldon and> plays the flute.> > Sheldon is 3 1/2 and has PDH Deficiency (a> mitochondrial disorder). > Sheldon is nonverbal, has developmental delays,> reflux, is delayed in > all areas, sensory integration problems, pronated> feet, low muscle > tone, esophageal dysmotility, I don't remember what> else right now. > He was in the hospital for 8 days earlier this month> (over Easter > ) with a virus so we're still recovering from that.> > Every free moment I have right now is spent trying> to get our house > ready to sell, we have to sell it because we can't> afford it on one > income and I can't work because I'm home caring for> Sheldon. Oh yeah, > we live in Malta, NY.> > I'll attach one photo but I know not everyone> receives photos with > the e-mails so I've put updated photos in the photos> area on the > yahoo mito group site under 'Sheldon and Family.'> > I don't know what I'd do without this group, it is> so good to be able > to talk with others who are going through the same> things.> > Stacey __________________________________ Do you Yahoo!? Yahoo! Mail - Easier than ever with enhanced search. Learn more. http://info.mail.yahoo.com/mail_250Please contact mito-owner with any problems or questions. Ann (mito), mom to - asthma, seizures, tremors, milk intolerance, reflux, ptosis, vision problems, headaches, probable Strokelike episodes, suspected mito, and to our angel ^j^ Kate Please visit www.HeartbeatsForMito.org website-A Site Dedicated to Families affected by Mitochondrial Disease. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2005 Report Share Posted April 23, 2005 My name is Donna Thorell, I am 38, and my husbands name is Rod, 39. We both joined this group and so very glad we did. We have 5 children, 4 boys and 1 girl. All the boys have mito, my daughter is suspected as having mito as she has a lot of symptoms and has been definitively diagnosed with Fibromyalgia. I also have mito, and they suspect I have MELAS. we deal with just about anything you can think of! we have kids with Gtubes, seizures, cardiomyopathy, atrophy in limbs, and muscle weakness, fatigue, vision issues, all over pains, dysmotility, pseudo obstruction, immunosuppression treated with IV IG and I am sure I am leaving things out! We have 3 wheelchairs, and a stroller. Needing another wheelchair or scooter soon..... My husband works out of state. We live in Southern Massachusetts right near cape cod, but he works in Indianapolis Indiana. HE commutes Mondays-Thursdays leaving me with all the house,child, and medical care. Up until this past month I have been dealing with things alone feeling as if I am crazy seeing all of the things going on. Tired of feeling alone, dealing with this disease brought my husband to find this group and the rest so they say is history! I have found people to be so loving and caring here. In the few short months of being here has made so much of the craziness seem do-able. I have thought of Suhad even though I do not know her, but My daughter's name is Lianna, and I can see her Leanna in mine!. care-free and happy with life. I cried with her at the losses, I have felt pain when someone's child is ill and then I also have been lifted up by the strength. One thing I have totally felt all along is My FAITH has kept me sane all the years. And I glad to share the faith of others here and know for a fact we are one family in God, who all deal with this disease. I am thankful for the group and the support. Donna Thorell mito mom to 5 mito kids. Re: Introductions? I too think it is a great idea... Hi most of you already know me..My name is Ann and I am a mom with mito. We have a son, who is 4 1/2-going on 10 it seems. has very few symptoms now, which makes our concern a lot less.... It has been a little over two months since his last seizure, his feet aren't turning inward as much, speech is wonderful and he seems to be seeing better...Although we are going into see about his vision in his eye.... I was diagnosed in 2003, after many years of testing. A muscle biopsy was how it was discovered, initial diagnosis Mitochondrial Myopathy...doctors still seem to think I have MELAS...Mitochondrial Encephalopathy Lactic Acidosis Stroke...since I have all the symptoms... In May 2004, I lost our baby " Kate" in my second trimester... Who knows if is a mito angel? Perhaps her tiny fragile life was spared and called to welcome others home... I am a stay at home mom, freelance writer/author in my spare time...I am a devout Christian and believe God's promises...One day I will see 's smiling face in Heaven, united again. Have a wonderful week. Ann Planning on attending St Lious conference... --- Stacey Fleming wrote:> I've been thinking that it would be nice if we all> re-introduced > ourselves. There are quite a few new families in the> group and it > would be nice to have all the pertinent info on a> family in one > e-mail, I think it would make it easier to remember> who's who that > way. Plus, I love seeing photos of the mito kids.> And wouldn't it be > nice if we had photos of ourselves too, so we can> see who we're > talking to?> > Anyway, just a thought, anyone who wants to and has> a free moment is > welcome to send an e-mail.> > So I'll go first. I'm Stacey Fleming. My husband Ken> and I have 3 > children. , 12, who is healthy and plays> piano. Kelsey, 11, is > also healthy. She is a big help with Sheldon and> plays the flute.> > Sheldon is 3 1/2 and has PDH Deficiency (a> mitochondrial disorder). > Sheldon is nonverbal, has developmental delays,> reflux, is delayed in > all areas, sensory integration problems, pronated> feet, low muscle > tone, esophageal dysmotility, I don't remember what> else right now. > He was in the hospital for 8 days earlier this month> (over Easter > ) with a virus so we're still recovering from that.> > Every free moment I have right now is spent trying> to get our house > ready to sell, we have to sell it because we can't> afford it on one > income and I can't work because I'm home caring for> Sheldon. Oh yeah, > we live in Malta, NY.> > I'll attach one photo but I know not everyone> receives photos with > the e-mails so I've put updated photos in the photos> area on the > yahoo mito group site under 'Sheldon and Family.'> > I don't know what I'd do without this group, it is> so good to be able > to talk with others who are going through the same> things.> > Stacey __________________________________ Do you Yahoo!? Yahoo! Mail - Easier than ever with enhanced search. Learn more. http://info.mail.yahoo.com/mail_250Please contact mito-owner with any problems or questions. Ann (mito), mom to - asthma, seizures, tremors, milk intolerance, reflux, ptosis, vision problems, headaches, probable Strokelike episodes, suspected mito, and to our angel ^j^ Kate Please visit www.HeartbeatsForMito.org website-A Site Dedicated to Families affected by Mitochondrial Disease. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2005 Report Share Posted April 23, 2005 Hi My name Is . My husband Jim and I have two beautiful redheads, a healthy 13 year old, and Tyler 5 year old with undx mito.We live in Endicott New York. Tyler was dx at 18 mo after a stomach virus brought him from slightly lg motor delayed (cruising around furniture, and crawling) to barely able to lift head off a pillow in 11 days time. He was first dx with fatty acid oxidation but has since been changed to possible complex II. Tyler has seizures, low muscle tone in lower half VERY strong upper body, nonverbal, able to walk some distance with posterior walker,g-tube for supplemental feedings to keep calorie intake up, significant dev delays. We have days where he crashes with severe weekness. And days that he goes like the energizer bunny!?! Can't figure him out.He is a very happy boy.Tyler enjoys anything with wheels and a motor. He thinks his sister is the funniest thing around!This group is new to us, but has already been quite comforting! Thank you to everyone! Keep Smiling Stacey Fleming wrote: I've been thinking that it would be nice if we all re-introduced ourselves. There are quite a few new families in the group and it would be nice to have all the pertinent info on a family in one e-mail, I think it would make it easier to remember who's who that way. Plus, I love seeing photos of the mito kids. And wouldn't it be nice if we had photos of ourselves too, so we can see who we're talking to?Anyway, just a thought, anyone who wants to and has a free moment is welcome to send an e-mail.So I'll go first. I'm Stacey Fleming. My husband Ken and I have 3 children. , 12, who is healthy and plays piano. Kelsey, 11, is also healthy. She is a big help with Sheldon and plays the flute.Sheldon is 3 1/2 and has PDH Deficiency (a mitochondrial disorder). Sheldon is nonverbal, has developmental delays, reflux, is delayed in all areas, sensory integration problems, pronated feet, low muscle tone, esophageal dysmotility, I don't remember what else right now. He was in the hospital for 8 days earlier this month (over Easter ) with a virus so we're still recovering from that.Every free moment I have right now is spent trying to get our house ready to sell, we have to sell it because we can't afford it on one income and I can't work because I'm home caring for Sheldon. Oh yeah, we live in Malta, NY.I'll attach one photo but I know not everyone receives photos with the e-mails so I've put updated photos in the photos area on the yahoo mito group site under 'Sheldon and Family.'I don't know what I'd do without this group, it is so good to be able to talk with others who are going through the same things.Stacey Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2005 Report Share Posted April 23, 2005 Hello to everyone, My name is a and I just joined this group earlier last week. I am undiagnosed at this point, however my symptoms are suspicous of a mito issue, and mito issues seem to run on both sides of the family. I have a 7 year old son, he's a great kid and fairly easy going/easy to please so that helps me quite a bit. I have had enough testing over the course of the last year or so to rule out most of the obvious syndromes/diseases that fit my symptoms. I have had to rely a lot on faith over the course of the last year, as my symptoms have become debilitating most of the time. I see my PCP this coming week to discuss what testing should be done as far as mito goes. A little concerned as my PCP knows very little about Mito, but I will be doing some of my own research and hopefuly that will help some. He has made an appointment for me to see a new neurologist (the original one I saw thought I was mental and then when a cross-reactivity test for West Nile came back as positive for a past infection blamed everything on that) My PCP was able to get me in next month (I am amazed and blessed as it typically takes 6 mo to get an appointment with this neurologist). I so empathize for the families who have with child/children with mito issues. You and your children are all truly amazing, and I really admire your strength. I will keep all of you in my thoughts and prayers. a The guardian angels of life sometimes fly so high as to be beyond our sight, but they are always looking down upon us. -----Jean Richter Stacey Fleming wrote: I've been thinking that it would be nice if we all re-introduced ourselves. There are quite a few new families in the group and it would be nice to have all the pertinent info on a family in one e-mail, I think it would make it easier to remember who's who that way. Plus, I love seeing photos of the mito kids. And wouldn't it be nice if we had photos of ourselves too, so we can see who we're talking to?Anyway, just a thought, anyone who wants to and has a free moment is welcome to send an e-mail.So I'll go first. I'm Stacey Fleming. My husband Ken and I have 3 children. , 12, who is healthy and plays piano. Kelsey, 11, is also healthy. She is a big help with Sheldon and plays the flute.Sheldon is 3 1/2 and has PDH Deficiency (a mitochondrial disorder). Sheldon is nonverbal, has developmental delays, reflux, is delayed in all areas, sensory integration problems, pronated feet, low muscle tone, esophageal dysmotility, I don't remember what else right now. He was in the hospital for 8 days earlier this month (over Easter ) with a virus so we're still recovering from that.Every free moment I have right now is spent trying to get our house ready to sell, we have to sell it because we can't afford it on one income and I can't work because I'm home caring for Sheldon. Oh yeah, we live in Malta, NY.I'll attach one photo but I know not everyone receives photos with the e-mails so I've put updated photos in the photos area on the yahoo mito group site under 'Sheldon and Family.'I don't know what I'd do without this group, it is so good to be able to talk with others who are going through the same things.Stacey Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2005 Report Share Posted April 24, 2005 This a great idea. My name is Brubaker and I have two beautiful boys, who is 15 and is pretty healthy, has asthma problems in the summer, and who we are still waiting for the results of his muscle biopsy (2 more days!!!!). started out with Ketotic Hypoglycemia, when he was 2 and from there his balance has progressively gotten worse, he has partial complex seizures, myoclonic spasms, possible reflux ( we are treating symptomatic to see if that is what is causing all the vomiting and spitting up), he is also developmentally delayed. recieves ot, pt, and speech. Oh yeah is 7 but more like a four/five year old. When was born he was not breathing (cord around his neck) It took them several minutes to get him breathing. He seemed normal until he was 2. The doc. told me if there was anything wrong from the lack of oxygen we wouldn't know until he was school age. is a very smart kid who is very kind and respectful and I'm so glad he is not a teenager out getting into trouble. I believe that God gave me such a wonderful boy becuase his plan was to give another wonderful boy that takes up much of my energy. i am so glad to have God in my life. It is what keeps me going, wellthat and talking to all of you. thank you all sooooo much. And I wanted to tell Suhad that I am so glad you are not leaving this group. I feel for you and your loss of your beautiful girls an dyou words are courageous and give me strength. You are a beautiful soul. Thank you all from the depths of my soul, Stacey Fleming wrote: I've been thinking that it would be nice if we all re-introduced ourselves. There are quite a few new families in the group and it would be nice to have all the pertinent info on a family in one e-mail, I think it would make it easier to remember who's who that way. Plus, I love seeing photos of the mito kids. And wouldn't it be nice if we had photos of ourselves too, so we can see who we're talking to?Anyway, just a thought, anyone who wants to and has a free moment is welcome to send an e-mail.So I'll go first. I'm Stacey Fleming. My husband Ken and I have 3 children. , 12, who is healthy and plays piano. Kelsey, 11, is also healthy. She is a big help with Sheldon and plays the flute.Sheldon is 3 1/2 and has PDH Deficiency (a mitochondrial disorder). Sheldon is nonverbal, has developmental delays, reflux, is delayed in all areas, sensory integration problems, pronated feet, low muscle tone, esophageal dysmotility, I don't remember what else right now. He was in the hospital for 8 days earlier this month (over Easter ) with a virus so we're still recovering from that.Every free moment I have right now is spent trying to get our house ready to sell, we have to sell it because we can't afford it on one income and I can't work because I'm home caring for Sheldon. Oh yeah, we live in Malta, NY.I'll attach one photo but I know not everyone receives photos with the e-mails so I've put updated photos in the photos area on the yahoo mito group site under 'Sheldon and Family.'I don't know what I'd do without this group, it is so good to be able to talk with others who are going through the same things.Stacey Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2005 Report Share Posted April 24, 2005 hi, my name is bethany and my husband, john and i have three children. our daughter, anna grace, has been dx with leighs. she is 5.5 years old, nonverbal & nonambulatory. She communicates through facial expressions and verbal sounds. She is completely aware of everything that happens and does not miss a beat. She attends kindergarten and loves going to school. (she will cry if she misses a day!) we have two sons, who are not affected (one is anna grace's twin brother) we live in western maryland. bethany mom to brennan 8, palmer & anna grace (leighs) 5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2005 Report Share Posted April 24, 2005 My name is Misty Brown and I have three children Mikaela, Abigail, and my step-daughter le. Mikaela currently is heathly with only mild signs of mito like episodes. She is 6 years and in K she had learning disorders. le is 5 and quite healthy as she is from my husbands first union. Abigail 3.5 years however is our mito child. When Abigail was born she was perfect in every way. She developed normally or so we thought until she was a year and a half old. Within a few weeks Abigail developed hand foot and mouth, the flu, and ear infection, and to roto virus. Though Abigail recovered fully, within days of her recovery things began to change. She could no longer hold her head up, then she could not walk, and soon she couldn't even sit up to play with her toys. That was when we began the long journey to learn what was happening to our child. She was hopsitalized after two weeks of weakness, and several ER visits. Her CK lvls were 35,000 and her liver and kidneys were showing signs of disfunction. We were scared to death. 21 days in the hospital told us nothing. As Abigail recovered they told us that it was most likely a condition that would resolve and she would fully recover. Abigail never fully recovered. After nearly two years of testing, and 15 different doctors we now know that Abigail has a mitochondrial myopathy, and possibly a mild form of MD. She had her first muscle biopsy in February, which we have yet to recive a fill report on. In May she will have her tonsils taken out in hope of improving her sleep apnea though half is caused by centralized muscle weakness. Abigail has gone through too many crisis to count since the first one two years ago.Abigail is beginning to experience damage to the left side of her heart, her muscles are in a constant state of breakdown which daily pose the possability of damage to her liver and kidneys. She is on the Mito cocktail which has been wonderful. It was after the cocktail that she could walk up the stairs again with support. They are calling this complex I. Though they believe it not to be quite that simple. Abby sees OT, PT and speech. SHe also has a full physical with all her specialists durring every crisis or every 6 months in most cases. When Abigail failed to recover I left my career with NASA and I am now a full time mom. My children have become my career. We live in Montgomery county land a location that a small town girl from out west did not apriciate until Abby became ill. Now I am thankful for all the wonderful doctors we have so near to us. Daily I pray for all of us to find strength through this disease, and hope that someday we will have a cure. When I found this group almost a year ago I thanked God for all of you. Before then I felt as if I was the only mother on earth going through the pain of the unknown with a disease I had never heard of. Warm Regard, Misty (Myst)karen brubaker wrote: This a great idea. My name is Brubaker and I have two beautiful boys, who is 15 and is pretty healthy, has asthma problems in the summer, and who we are still waiting for the results of his muscle biopsy (2 more days!!!!). started out with Ketotic Hypoglycemia, when he was 2 and from there his balance has progressively gotten worse, he has partial complex seizures, myoclonic spasms, possible reflux ( we are treating symptomatic to see if that is what is causing all the vomiting and spitting up), he is also developmentally delayed. recieves ot, pt, and speech. Oh yeah is 7 but more like a four/five year old. When was born he was not breathing (cord around his neck) It took them several minutes to get him breathing. He seemed normal until he was 2. The doc. told me if there was anything wrong from the lack of oxygen we wouldn't know until he was school age. is a very smart kid who is very kind and respectful and I'm so glad he is not a teenager out getting into trouble. I believe that God gave me such a wonderful boy becuase his plan was to give another wonderful boy that takes up much of my energy. i am so glad to have God in my life. It is what keeps me going, wellthat and talking to all of you. thank you all sooooo much. And I wanted to tell Suhad that I am so glad you are not leaving this group. I feel for you and your loss of your beautiful girls an dyou words are courageous and give me strength. You are a beautiful soul. Thank you all from the depths of my soul, Stacey Fleming wrote: I've been thinking that it would be nice if we all re-introduced ourselves. There are quite a few new families in the group and it would be nice to have all the pertinent info on a family in one e-mail, I think it would make it easier to remember who's who that way. Plus, I love seeing photos of the mito kids. And wouldn't it be nice if we had photos of ourselves too, so we can see who we're talking to?Anyway, just a thought, anyone who wants to and has a free moment is welcome to send an e-mail.So I'll go first. I'm Stacey Fleming. My husband Ken and I have 3 children. , 12, who is healthy and plays piano. Kelsey, 11, is also healthy. She is a big help with Sheldon and plays the flute.Sheldon is 3 1/2 and has PDH Deficiency (a mitochondrial disorder). Sheldon is nonverbal, has developmental delays, reflux, is delayed in all areas, sensory integration problems, pronated feet, low muscle tone, esophageal dysmotility, I don't remember what else right now. He was in the hospital for 8 days earlier this month (over Easter ) with a virus so we're still recovering from that.Every free moment I have right now is spent trying to get our house ready to sell, we have to sell it because we can't afford it on one income and I can't work because I'm home caring for Sheldon. Oh yeah, we live in Malta, NY.I'll attach one photo but I know not everyone receives photos with the e-mails so I've put updated photos in the photos area on the yahoo mito group site under 'Sheldon and Family.'I don't know what I'd do without this group, it is so good to be able to talk with others who are going through the same things.Stacey Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2005 Report Share Posted April 24, 2005 This is a great idea! My name is Deb and I joined the list in January 2002...I can't believe I have been here that long and all that went on with us in a short time. My husband, Fred, and I have adopted four black and bi-racial kids with varies spec needs. We live in memphis and are very involved with our church and a lot of other folks in our lives. Our son is our reason for being here. was a drug baby and had a lot of delays and mild issues when we got him at 6 months old. When he was 5 and a half, the teachers noticed a bit of decline in him...I had noticed some of it too but had rationalized it away. Eventually we found this list and saw Shoffner a couple months later...he was diagnosed as Complex I and IV, I+III and II+III. He lost his battle just eleven months later. He was almost seven when he died and his brain was so affected there wasn't a lot anyone could do for him. OUr managing doc was Dr Korson in Boston, whom we adore! Our other kids are Gaige, who is 6. Gaige has a diagnosis of HIgh Functioning Autism but he may actually have Neurofibromatosis...we will run a test in June to find out, now that more symptoms are exhibitng themselves. Bliss turned four today! She is my sweetie and our miracle. She has what turned out to be extremely mild Cerebral Palsy. When she was a baby she didn't pass her hearing tests and they told us they didn't know if she would walk or talk. You spec moms would pick up her little quirks, because we special moms can see it a mile away, but regular moms think she is 'normal". She still has high tone in her calves and has a hard time walking long distance. I don't know what we will do when she outgrows her stroller, but for now, we do what we can! True is our new addition...we picked him up from the hospital when he was two days old. He is fourteen weeks on tuesday. We are in the diagnostic phase with him but so far we know he has GERD, Hypertonia, Flattened Head and Asymetrical Face/ears and Torticollis. We are seeing a neurosurgeon to see if the head sutures need to be operated on and also to see about tethered cord. He is keeping us on our toes. He starts PT in the next week or two and may need Speech too. So we have a myriad of issues going on in our home but its full of life and passion! We are gearing up for our project we do in memory of ...you can check it out at www.LifeofLoveProject.org and I know a lot of you participated last year. I love this group and know there is a certain niche I fit in. I am particularly open to those of you who are going through end-of-life transitions with your kids or who want to be able ot vent/talk freely about such possibilities. I am always open to talking on the phone with you guys too! I got/get so much from this group and want to give it all back! deb...mom to four great kids and wife to one amazing guy!www.LifeofLoveProject.orgwww.debwells.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2005 Report Share Posted April 25, 2005 This was a great idea. My name is ruth hiland. I'm 38, and now live in southern Colorado, retruning back "home" after 12 yrs in southern California. I amd most definitely one of the "oldsters" on this group, having joined back in the dinosaur days of 1998. I am a single mom, raising two beautiful treasures, both of whom are mito affected. Mitch just turned 10 last month. He was my "healthy" baby, such a great kid, said his first word (in sign language...i'm such a speech therapist!!) at 8 months old and has never stopped. He started showing symptoms at 6 1/2, was really only picked up through the schools. He fatigues very quickly, usually can't get his work done, has fine motor delays, and heat intolerance. But he is so far cognitively intact. Lexi is my miracle child. She started showing symptoms at 4 hours old that "something" was wrong. She had bradycardia, followed by tachcardia, then sleep apnea, then poor suck-swallow-breath synchrony. Then failure to thrive, reflux, fine motor delay, gross motor delay, poor growth in every area. then we started in with feeding problems, speech delay, atypical seizures (hiccups), cyclical constipation, and urinary retention of up to 48 hrs. I can't tell you how many times i was told she'll never make it....but she has! She is now in regular ed 1st grade, a top reader, and if you didn't "know" she had issues you'd never suspect. She stillh as dusky spells and carries O2 everywhere, still has seizures, feeding issues, and fine motor delay. We just got a tentative diagnosis of PDH last year. So that is us in a nutshell. ruth for the hilandgang Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2005 Report Share Posted April 25, 2005 Hello everyone - I am one of the new ones to the group! My name is , I am 34 years -old. My husband Eddie and I have been married 10 years and we live in Modesto, CA. Ten years ago were blessed with an amazing little girl, Amber. I had an ideal pregnancy with no complications what so ever and gave birth to a 5 lb 3 oz little girl at 35 weeks. Although she was tiny, she was healthy and score good on her tests. Fast forward to 5 months later - Amber cried constantly, she no longer smiled, and was unable to suck from her bottle. To top it off, she was no longer gaining weight. We tried everything to help her. My husband and I woke up with her every 2 hours and squeezed milk into her through a sports bottle, anything to get her to drink. We even put weight gainer in her milk to try to get her to put on some weight. I remember how cruel the doctors were in asking us "if we fed her or if we were depriving her" They even told us if she didn't get noticeably better, that she might get taken away from us!! After months and months of various testing, the doctors at Standford finally diagnosed her with Leigh's (she was just over a year). We were devastated. They gave us 2 options: go home and wait for her to die, or institutionalize her so we didn't have to watch her decline. There was no way we were going to give up that easily on her. She was our life. I brought her into this world and I was going to be there for her when she left this word!!! We were sent to San Diego to see Dr. Haas. That visit was the best thing we did for her. Although it was difficult to see her have to go through all the blood work, fasting, and muscle biopsy - I believe it helped her. She was put on a cocktail of sorts and given DCA. As months passed, she got better and better. She began to smile, laugh, and was even able to drink from a straw. The Lord brought out little girl back, but not without a price. She is significantly delayed developmentally. She is non-verbal and is unable to walk. Although she is tall, she has a tiny frame and weighs about 53 lbs. But she has a smile that lights up a room ! and her eyes . . . when she looks at you, it's as if she can see your soul ! Recently, her disease is becoming more apparent as she sleeps alot and has tremors more frequently. We have recently taken her out of school and I am trying to work it out so that I can quit my job to take care of her. Back when Amber was diagnosed, we made the decision not to have any more children for fear that we would bring another sick child into this world. I yearn for more children everyday, but I know I made the right decision. Someday, we hope to adopt a little brother or sister for Amber, but for now, we want to focus all our attention on her. I don't really know what the future hold for us but I know someday I will have to hand her back to God, but with every day that goes by, I am so thankful God chose us as her parents, even if she isn't 100%- I wouldn't trade her for anything. I am truly blessed and am truly thankful to have such an incredible husband who is both helpful and caring. Thank you for letting me share my story with you all and I look forward to reading more introductions from incredible parents Stacey Fleming wrote: I've been thinking that it would be nice if we all re-introduced ourselves. There are quite a few new families in the group and it would be nice to have all the pertinent info on a family in one e-mail, I think it would make it easier to remember who's who that way. Plus, I love seeing photos of the mito kids. And wouldn't it be nice if we had photos of ourselves too, so we can see who we're talking to?Anyway, just a thought, anyone who wants to and has a free moment is welcome to send an e-mail.So I'll go first. I'm Stacey Fleming. My husband Ken and I have 3 children. , 12, who is healthy and plays piano. Kelsey, 11, is also healthy. She is a big help with Sheldon and plays the flute.Sheldon is 3 1/2 and has PDH Deficiency (a mitochondrial disorder). Sheldon is nonverbal, has developmental delays, reflux, is delayed in all areas, sensory integration problems, pronated feet, low muscle tone, esophageal dysmotility, I don't remember what else right now. He was in the hospital for 8 days earlier this month (over Easter ) with a virus so we're still recovering from that.Every free moment I have right now is spent trying to get our house ready to sell, we have to sell it because we can't afford it on one income and I can't work because I'm home caring for Sheldon. Oh yeah, we live in Malta, NY.I'll attach one photo but I know not everyone receives photos with the e-mails so I've put updated photos in the photos area on the yahoo mito group site under 'Sheldon and Family.'I don't know what I'd do without this group, it is so good to be able to talk with others who are going through the same things.Stacey Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2005 Report Share Posted April 25, 2005 Hello my name is . My husband, Jeff, and I are the parents of 5 wonderfull children (10), (8), Bre-Anne (7), Grace (2, almost 3) and (7 months). Grace is our only child who has mito. We live about 20 min. west of Cleveland Ohio. Grace was born at a healthy 9.1 lbs. She seemed rather healthy in the hospital, despite jaundice and low blood sugar. She began getting ill at about 3 weeks, starting with GERD and feeding issues. Things slowly went downhill until it was discovered that she had a fastly deteriorating liver. This left doctors scrambling until her diagnosis of Mito in July of 2003. Since her diagnosis she has responded well to the cocktail. She still has issues, but none are as life threatening as before. Currently she is anxiously awaiting her third birthday where she believes that Ho Ho (Santa) is bringing her presents. Grace also loves to play with her brothers and sisters. She loves to help with her baby brother (although I usually see it as torturing him.) Grace is truly an amazing kid, who has amazed everyone who has seen her grow up. I'm still taken back at every appointment with Dr. Cohen, he always walks in the room with the biggest smile after seeing Grace. This group has been such a blessing to me. It has helped me understand this disease with much more "life" understanding. This is a great place to turn to when things are not going well. I also love hearing inspirational stories from other parents, and love to share when Grace does something new. (Oh I hope to tell you soon that Grace is potty trained, still looking like awhile off though.) Thanks to all for reading, and sharing your stories Download your favorite songs at MSN Music - Over 1 million songs for just 99¢ each Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 25, 2005 Report Share Posted April 25, 2005 HI, MY NAME IS DAVONNE ATKINS, I LIVE IN SEYMOUR,TN. I JOINED THIS GROUP ABOUT A YEAR AGO. I AM 32 YEARS OLD MARRIED TO KIP AND WE HAVE KAITLIN SHE IS 9, KARSON HE IS 4, AND KARLEE BETH WHO PASSED AWAY 8 MONTHS AGO FROM COMPLEX 1 AND 4. SHE WAS 20 MONTHS OLD. I SIT HERE VERY OFTEN AND READ ALL THESE POSTS. I HAVENT POSTED HERE IN A WHILE, BUT I SEEN THIS AND I WANTED TO SHARE KARLEE'S LIFE WITH YOU ALL. SO HERE IT GOES. KARLEE BETH ATKINS- BORN 11-14-02-- PERFECT!! SUCH A SWEET SWEET BABY! NEVER EVER CRIED, I HONESTLY MEAN NEVER. SLEPT ALL NITE, SMILED ALOT AND SEEMED SO HAPPY. ONE THING, SHE DIDNT CARE TO EAT. I WOULD SIT FOR HOURS AT A TIME AND NURSE HER, SHE JUST DIDNT WANT TO EAT. ON 12- 1-02, KARLEE AND KAITLIN WERE WITH MY SISTER IN LAW, I WAS IN THE HOSPITAL WITH A STAPH INFECTION IN MY INCISION FROM MY C-SECTION. KAITLIN WALKED BY KARLEE AND FELT HER HEAD, SHE CALLED DOR DONNA AND SAID KARLEE WAS BURNING UP. DONNA FELT HER, SHE WAS ON FIRE AND LIFELESS, THEY TOOK KARLEE TO THE ER, SHE WAS ADMITTED FOR RSV, HERE I WAS IN ONE HOSPITAL AND MY POOR LITTLE BABY WAS AT ANOTHER ONE. THEY GAVE HER FLUIDS FOR 1 WEEK AND SENT HER HOME. JAN 03, BACK IN THE HOSPITAL WITH RSV. I HAD NEVER HEARD OF THIS. KAITI AND KARSON WERE HARDLY EVER SICK WITH COLDS SO THIS WAS NEW TO ME. FEB, MARCH,APRIL AND MAY WENT BY. KARLEE WAS STILL VERY HAPPY,SWEET, LOVED EVERYONE AND SURE ENOUGH EVERYBODY LOVED HER. SHE STILL SLEPT GOOD AND WAS JUST SO CONTENT. THE END OF MAY I WAS GETTING A LITTLE CONCERNED, SHE STILL WOULDNT EAT MUCH, SHE DIDNT SET UP TO GOOD AND WASNT TRY TO CRAWL. I THOUGHT THIS ISNT RIGHT, I HAD 2 OTHER BABIES AND THEY WERE DOING ALL THIS AT 5 MONTHS. I WOULD TAKE HER TO THE PED AND THEY WOULD SAY, " SHE JUST A LITTLE BEHIND BECAUSE OF THE RSV 2 TIMES. " I KNEW DEEP DOWN SOMETHING WASNT RIGHT, BUT EVERYBODY, FAMILY,FRIENDS, DOCS AND KIP KEPT SAYING GIVE HER TIME SHE'LL CATCH UP. I WAS STILL WORRIED. JUNE AND JULY WENT, AND I WAS STARING TO NOTICE MORE THINGS ABOUT KARLEE BETH. HER EYES WOULD LOOK WEIRD SOMETIMES, SHE WAS LIKE SHE WAS OUT IN SPACE. THE EATING KEPT GETTING WORSE, AND SHE WOULD CRY REAL BAD WHEN I WOULD CHANGE HER CLOTHES. IN AUGUST WE WENT BACK TO THE PEDIATRICIAN, I WANTED SOMETHING DONE!!! SO WE STARTED WITH A PHYSIOTRIST, THEN A GENETIST, START PT,OT,AND SPEECH. THE PHYSIOTRIST SAID KARLEE HAD SENSORY INTEGRATION. GENETIST SAID SHE NEED A MRI THAT HER MUSCLE TONE WAS WEAK. PT,OT AND SPEECH MADE KARLEE SO STESSED AND NERVOUS, IT WAS SO SAD THAT THERAPY WAS SO TRAMATIC FOR HER. THEY ALL LOVED HER DEARLY. JAN 04, KARLEE STARTED HAVING SEIZURES. SHE HAD A MRI, MUSCLE BIOPSY,EEG, AND ALOT OF STOMACH TESTS. IN MARCH WE GOT HER DIAGNOSIS. THEY TOLD ME SHOULD WOULD PROBABLY LIVE TILL SHE WAS 5 OR 6. ALOT HAPPENED THE MONTH OF MARCH. SHE WENT BLIND, GOT A G-TUBE, SEEN DR.SHOFFNER AND HER LITTLE LIFE WAS FADING AWAY. SHE WOULD HAVE GREAT DAYS AND THEN A LITTLE SNIFFLE WOULD MAKE HER CRASH. WE TRIED THE VITAMINS FOR A COUPLE OF WEEKS, I DIDNT SEE ANY INMPROVEMENT AND DR.SHOFFNER SAID TO STOP THEM AND HER THERAPIES. HE SAID THAT HER MRI WAS SO BAD THAT HE WAS VERY SHOCKED TO SEE HER ALIVE IN HIS OFFICE AFTER HE LOOKED AT HER MRI. APRIL,MAY AND JUNE WE WERE IN AND OUT THE OF HOSPITAL.CHANGING MEDS DAY AFTER DAY, SEIZURES AND JUST VERY SAD. BUT SHE STILL WOULD LAUGH AT US AND FIGHT VERY HARD. JULY 8,2004. KARLEE STARTED TO DIE. I AM A VERY HONEST PERSON, I DONT WANT ANY OF THIS TO SCARE YOU. IT IS AWFUL. SHE WENT THROUGH ALOT OF CHANGES THE LAST 4 WEEKS OF HER LIFE. I TRIED TO KEEP HER AS COMFORTABLE AS I COULD. SHE WAS ON MORPHINE,DURAGESIC PATCH, AMITRIPTILINE, AND MORE. 8-10-2004 8:15PM KARLEE BETH DIED IN MY ARMS. THE LAST DAY OF HER LIFE I HELD HER ALL DAY. I DIDNT KNOW THAT SHE WAS GOING TO DAY THIS DAY. SHE JUST KEPT GETTING WORSE AND SLIPPING AWAY. SHE WENT IN PEACE. I KNOW THAT SHE IS IN HEAVEN. SHE IS HAPPY AND HEALTHY, I MISS HER, I MISS HER SO MUCH. MY HEART HURTS, SHE WAS MY LIFE. I KNOW THIS MIGHT BE AWFUL TO SAY, BUT I WOULD BE SO JEALOUS IF SOME ONE ELSE WAS HER MOMA. I HAVE NEVER IN MY LIFE HELD OR LOVED SOMETHING AS PURE AS SHE WAS. I OFTEN THINK SHE WAS NOT OF THIS WORLD. AGAIN, SORRY IF I HAVE UPSET YALL. I AM GLAD I GOT TO DO THIS AND I AM SO THANKFUL FOR THIS GROUP OF PEOPLE. I LEARNED ALOT. I THINK KARLEE'S DOCTORS LEARNED ALOT TOO. I THINK OF ALL THESE SWEET KIDS AND WHY THEY HAVE THIS TERRIBLE DISEASE. I WANT SO MUCH FOR A CURE. AND I WANT EVERYONE TO KNOW ABOUT IT. YOU CAN SEE KARLEE AND HER FAMILY IN THE PHOTO SECTION. THANK YOU FOR YOUR SUPPORT MAY GOD BE WITH YOU ALL. PLEASE REMEMBER KARLEE BETH AND ME. LOVE, DAVONNE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 It has been great reading all the introductions and I am finally getting around to writing one for us. My signature tells a lot about my family and so I will try to keep it short. I have two girls, Asenath-5 and Zipporrah 18 months, that are most affected by what seems to be Mito but unfortunately we are one of those families that have to live with a lack of 100% diagnosis and probably will always be in that position. I have dealt with the symptoms myself for many years and although for many years I really struggled, I am presently doing very well. For the past several years we have had to refocus our energies upon Asenath and then Zipporrah, trying to keep them healthy. I am thirty-five in a couple of weeks and in my spare time love to crochet and take bubble baths. I, of course, love children and have seven biological children, two adopted children, and two pre-adopt/foster children. Each day is full of challenges and joys. Yes, some days are crazy, but other days are much calmer than most could believe possible with 11 kids. Our biggest challenge is fitting in therapy sessions for the children. Up until a couple weeks ago we had 5 children needing therapy totally 19 hours weekly. But thankfully with time, Marquis no longer needs Speech and Asenath has graduated to bi-weekly PT! That makes three hours less most weeks, and Zipporrah will soon be graduating from SP too if she continues to do as well as she has been of late we will have another two hours less per week. We have learned a few good tricks of double or tripling up therapies by using several bedrooms at the same time, making less hours taken up during the day for therapy and that has really helped. The girls overall are doing well the past few months and we are so pleased to not need to go to Mayo as often this year. It felt like we were living there last year. Asenath also deals with 4 narrow arteries in her brain (CNS Vasculitis) and has required steroid treatment for over 1 1/2 years now and we are almost done with her treatment plan, hoping this time she can remain off them. Zipporrah's biggest issue is fatigue and we have to be careful to not let her over due it or she is drained for days to weeks. To read more specifics, read my signature below and visit our caringbridge webpages. A full story of how we learned about Mito is at the beginning of the postings. The site at heartbeatsformito is not currently running yet though as Ann is redoing it. See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a photo look into Mito) Darla: mommy to Asenath (5) Probable Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomia, SID, global delays, cyclic vomiting, bladder issues, some wheelchair use, eye issues, gastric emptying issues... Zipporrah (18 months) Probable Mito, strokes, neuro-motor planning, SID, GERD, dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant subclavian artery, disautonomia, hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16) migraines, sensory issues, & some evidence of SLE's... Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3) Joey (16 months) with hydrocephalus, dysgenesis of the corpus callosum, encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev. delays, left hemiplegia (arm)... (16 months) SID, dev. delays, right hemiparesis issues... Introductions? > I've been thinking that it would be nice if we all re-introduced > ourselves. There are quite a few new families in the group and it > would be nice to have all the pertinent info on a family in one > e-mail, I think it would make it easier to remember who's who that > way. Plus, I love seeing photos of the mito kids. And wouldn't it be > nice if we had photos of ourselves too, so we can see who we're > talking to? > > Anyway, just a thought, anyone who wants to and has a free moment is > welcome to send an e-mail. > > So I'll go first. I'm Stacey Fleming. My husband Ken and I have 3 > children. , 12, who is healthy and plays piano. Kelsey, 11, is > also healthy. She is a big help with Sheldon and plays the flute. > > Sheldon is 3 1/2 and has PDH Deficiency (a mitochondrial disorder). > Sheldon is nonverbal, has developmental delays, reflux, is delayed in > all areas, sensory integration problems, pronated feet, low muscle > tone, esophageal dysmotility, I don't remember what else right now. > He was in the hospital for 8 days earlier this month (over Easter > ) with a virus so we're still recovering from that. > > Every free moment I have right now is spent trying to get our house > ready to sell, we have to sell it because we can't afford it on one > income and I can't work because I'm home caring for Sheldon. Oh yeah, > we live in Malta, NY. > > I'll attach one photo but I know not everyone receives photos with > the e-mails so I've put updated photos in the photos area on the > yahoo mito group site under 'Sheldon and Family.' > > I don't know what I'd do without this group, it is so good to be able > to talk with others who are going through the same things. > > Stacey > > > Please contact mito-owner with any problems or questions. > Quote Link to comment Share on other sites More sharing options...
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