Introductions

[Guest guest]

Hi everyone. My name is Meagan Ochsner and I am new to the group. I

have two beautiful girls, Alison who will be 8 on May 2, and Sophia

who will be one on April 27. We live in Louisville, Kentucky with my

parents. Sophia has recently been diagnosed with Complex I, III, and

IV deficiency. She has been so ill since birth that I was unable to

return from maternity leave and eventually had to give up my job

completely and move back with my parents in order to care for her. I

won't go into a lot of detail here as I have it posted on Sophie's

CaringBridge site. All are welcome to visit her page!!

Sophie has GERD (despite a nissen), hypotonia, developmental delays,

asthma, muscle weakness, muscle pain, migraines, feeding problems,

sensory issues, and is partially G-tube fed. It was a long road to

diagnosis for her as they started trying to figure it out when she

was only 10 weeks old (this was during her second admission to the

hospital). She has been admitted to the hospital or had to the go to

the ER or be there just for tests so many times that she starts

crying when we get out of the car in the parking garage. It really

gets ugly if a nurse or doctor rides the elevator with us too.

She gets weekly PT, OT, and Speech. We are fortunate as her

therapies were started when she was 3 months old and have helped her

tremendously. We also have a nutritionist who visits us once a month

also to help us keep track of how to balance her calories and

nutrients for her little intake during the day.

Sophie's favorite things are bears, baby dolls, balls and anything

her big sister does. She will just bust a gut laughing if her sister

sings and dances for her!!

I haven't had any testing even considered for Alison as she is very

healthy overall. She does have ADD, has recently gotten glasses and

has some other questionable symptoms that escape me right now.

Sophie has been through so much with testing I can't bear the thought

of putting Alison through anything when she seems so healthy.

I have already gotten so much from being a part of the group. It's

nice even when I'm not posting a message to read other's and know

that there families out there who truly understand all of the

emotions I am having.

Just an added thought: Is anyone going to be attending the UMDF

conference in St. Louis this June?

[Guest guest]

Sorry, I forgot to add Sophie's caringbridge site:

www.caringbridge.org/ky/sophiesong

>

> Hi everyone. My name is Meagan Ochsner and I am new to the group.

I

> have two beautiful girls, Alison who will be 8 on May 2, and Sophia

> who will be one on April 27. We live in Louisville, Kentucky with

my

> parents. Sophia has recently been diagnosed with Complex I, III,

and

> IV deficiency. She has been so ill since birth that I was unable

to

> return from maternity leave and eventually had to give up my job

> completely and move back with my parents in order to care for her.

I

> won't go into a lot of detail here as I have it posted on Sophie's

> CaringBridge site. All are welcome to visit her page!!

>

> Sophie has GERD (despite a nissen), hypotonia, developmental

delays,

> asthma, muscle weakness, muscle pain, migraines, feeding problems,

> sensory issues, and is partially G-tube fed. It was a long road to

> diagnosis for her as they started trying to figure it out when she

> was only 10 weeks old (this was during her second admission to the

> hospital). She has been admitted to the hospital or had to the go

to

> the ER or be there just for tests so many times that she starts

> crying when we get out of the car in the parking garage. It really

> gets ugly if a nurse or doctor rides the elevator with us too.

>

> She gets weekly PT, OT, and Speech. We are fortunate as her

> therapies were started when she was 3 months old and have helped

her

> tremendously. We also have a nutritionist who visits us once a

month

> also to help us keep track of how to balance her calories and

> nutrients for her little intake during the day.

>

> Sophie's favorite things are bears, baby dolls, balls and anything

> her big sister does. She will just bust a gut laughing if her

sister

> sings and dances for her!!

>

> I haven't had any testing even considered for Alison as she is very

> healthy overall. She does have ADD, has recently gotten glasses

and

> has some other questionable symptoms that escape me right now.

> Sophie has been through so much with testing I can't bear the

thought

> of putting Alison through anything when she seems so healthy.

>

> I have already gotten so much from being a part of the group. It's

> nice even when I'm not posting a message to read other's and know

> that there families out there who truly understand all of the

> emotions I am having.

>

> Just an added thought: Is anyone going to be attending the UMDF

> conference in St. Louis this June?

[Guest guest]

I haven't posted much lately but I do read the posts daily. I am going to St. Louis for the convention and so is my daughter, Amie and her husband, Doyle. We are greatly looking forward to it. They are hopefully going to bring Audrey for one day if she is up to it. I hope to meet many of the wonderful people I have been talking to for the past nearly 3 years. We are lucky in that we live only about 80 miles away so we will be driving up on Friday and Saturday.

Kathy, grandma to Audrey, 3 yearstooge01 wrote:

Hi everyone. My name is Meagan Ochsner and I am new to the group. I have two beautiful girls, Alison who will be 8 on May 2, and Sophia who will be one on April 27. We live in Louisville, Kentucky with my parents. Sophia has recently been diagnosed with Complex I, III, and IV deficiency. She has been so ill since birth that I was unable to return from maternity leave and eventually had to give up my job completely and move back with my parents in order to care for her. I won't go into a lot of detail here as I have it posted on Sophie's CaringBridge site. All are welcome to visit her page!!Sophie has GERD (despite a nissen), hypotonia, developmental delays, asthma, muscle weakness, muscle pain, migraines, feeding problems, sensory issues, and is partially G-tube fed. It was a long road to

diagnosis for her as they started trying to figure it out when she was only 10 weeks old (this was during her second admission to the hospital). She has been admitted to the hospital or had to the go to the ER or be there just for tests so many times that she starts crying when we get out of the car in the parking garage. It really gets ugly if a nurse or doctor rides the elevator with us too. She gets weekly PT, OT, and Speech. We are fortunate as her therapies were started when she was 3 months old and have helped her tremendously. We also have a nutritionist who visits us once a month also to help us keep track of how to balance her calories and nutrients for her little intake during the day.Sophie's favorite things are bears, baby dolls, balls and anything her big sister does. She will just bust a gut laughing if her sister sings and dances for her!!I haven't had any

testing even considered for Alison as she is very healthy overall. She does have ADD, has recently gotten glasses and has some other questionable symptoms that escape me right now. Sophie has been through so much with testing I can't bear the thought of putting Alison through anything when she seems so healthy.I have already gotten so much from being a part of the group. It's nice even when I'm not posting a message to read other's and know that there families out there who truly understand all of the emotions I am having.Just an added thought: Is anyone going to be attending the UMDF conference in St. Louis this June?Please contact mito-owner with any problems or questions.

[Guest guest]

Hi , welcome to the group...It is such a wonderful place to be... Your little ones are beautiful..

work what is work?? non stop dr appointments, er visits, pt, ot, speech, meds.. thats my defination of work...

, Mom to Hailee (6), diagnosed with septo optic dysplasia, mitocondrial disorder, epilipsy, 2brain disorders, neuroblastoma tumor, OMS,SID,ADHD,OCDAutism, and partial gtube feed..

Please visit her site at

Http://www.caringbridge.org/az/hailee/