How is Asenath and Zipporah?

[Guest guest]

Hey Darla,

I am just wondering how the girls are doing. I wanted to do

something for you when they were both in the hospital, my goodness

girl, that must have been a tough week! I would have brought a meal

in, except from Ohio to Iowa it would have gotten a little cold! ;-)

We will keep you in our prayers over the holiday weekend. Joni

[Guest guest]

Hey Darla,

I am just wondering how the girls are doing. I wanted to do

something for you when they were both in the hospital, my goodness

girl, that must have been a tough week! I would have brought a meal

in, except from Ohio to Iowa it would have gotten a little cold! ;-)

We will keep you in our prayers over the holiday weekend. Joni

[Guest guest]

Oh, thank you so much for your consideration. The girls are slowly

recuperating. Asenath still is vomiting more than I would like and it seems

like her stomach just isn't tolerating food or meds like before, so I am not

sure where all this will lead to. Her eyes are definitely getting better as

the days go on but she still says she " can't see " so there must be some type

of residual affects going on. Not sure what though as we weren't able to

get much information from the optho. doc since she didn't cooperate as well

as an older child and they can't see lots of neurological issues (as we have

seen several times in myself, my son, and one of my older daughters). But

she is using both eyes again so vision definitely is returning to the left

eye which appeared to be blind for the first 5 days after she finally

started waking up again last week.

Zipporrah is also still very sensitive to her feedings and

meds and we are trying to slowly increase the speed of her feedings as she

has been looking like she lost some weight this week. She has been getting

less than half or her normal intake thus far. She hasn't appeared to any

set backs thankfully. During her hospitalization she was pretty weak and

didn't walk for a couple of days but no major changes.

On a positive note, I haven't mentioned to many that there was a MAJOR

change in her narrow arteries that appeared in her MRA. All four of her

arteries have opened about 3/4 of the way! The docs never dreamed this

could happen and were only hoping they could stop further arteries from

narrowing. This was only a trial as they have never had the opportunity to

treat a child with CNS Vasculitis before. Mayo has only seen it on autopsy

in children. We are so happy to see the opening, but frustrated and a

little confused as to the negative turn of events with this last ailment.

We are not sure if this was a metabolic stroke or a vascular stroke. With

the vessels opening, it would be frustrating to know they still could affect

her this much! But we are still so excited that the steroids have been

working. She was placed back on them at 3 ml. per day to see if the stroke

episodes can stop again (as we decreased the steroids she began having

episodes again).

Thanks for your note.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

How is Asenath and Zipporah?

>

>

>

> Hey Darla,

> I am just wondering how the girls are doing. I wanted to do

> something for you when they were both in the hospital, my goodness

> girl, that must have been a tough week! I would have brought a meal

> in, except from Ohio to Iowa it would have gotten a little cold! ;-)

> We will keep you in our prayers over the holiday weekend. Joni

>

>

>

>

>

>

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

>

[Guest guest]

Oh, thank you so much for your consideration. The girls are slowly

recuperating. Asenath still is vomiting more than I would like and it seems

like her stomach just isn't tolerating food or meds like before, so I am not

sure where all this will lead to. Her eyes are definitely getting better as

the days go on but she still says she " can't see " so there must be some type

of residual affects going on. Not sure what though as we weren't able to

get much information from the optho. doc since she didn't cooperate as well

as an older child and they can't see lots of neurological issues (as we have

seen several times in myself, my son, and one of my older daughters). But

she is using both eyes again so vision definitely is returning to the left

eye which appeared to be blind for the first 5 days after she finally

started waking up again last week.

Zipporrah is also still very sensitive to her feedings and

meds and we are trying to slowly increase the speed of her feedings as she

has been looking like she lost some weight this week. She has been getting

less than half or her normal intake thus far. She hasn't appeared to any

set backs thankfully. During her hospitalization she was pretty weak and

didn't walk for a couple of days but no major changes.

On a positive note, I haven't mentioned to many that there was a MAJOR

change in her narrow arteries that appeared in her MRA. All four of her

arteries have opened about 3/4 of the way! The docs never dreamed this

could happen and were only hoping they could stop further arteries from

narrowing. This was only a trial as they have never had the opportunity to

treat a child with CNS Vasculitis before. Mayo has only seen it on autopsy

in children. We are so happy to see the opening, but frustrated and a

little confused as to the negative turn of events with this last ailment.

We are not sure if this was a metabolic stroke or a vascular stroke. With

the vessels opening, it would be frustrating to know they still could affect

her this much! But we are still so excited that the steroids have been

working. She was placed back on them at 3 ml. per day to see if the stroke

episodes can stop again (as we decreased the steroids she began having

episodes again).

Thanks for your note.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

How is Asenath and Zipporah?

>

>

>

> Hey Darla,

> I am just wondering how the girls are doing. I wanted to do

> something for you when they were both in the hospital, my goodness

> girl, that must have been a tough week! I would have brought a meal

> in, except from Ohio to Iowa it would have gotten a little cold! ;-)

> We will keep you in our prayers over the holiday weekend. Joni

>

>

>

>

>

>

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

>

[Guest guest]

Yeah!!!! I am happy for you that the steroids are helping her. It is always encouraging

when something goes the way it should isn't it? Collin has never had strokes that we know of, but he has brain involvement (atrophy of the cerebellum, herniated brainstem

and lesions), along with suspected decreased oxygen flow to the central part of his brain.

We rejoice with any good news or slowed progression of this disorder. If has mito,

at least it hasn't seemed to affect her as much as Collin. I have prayed for healing for all children with mito, and especially prayed for Asi and Porrah through this last event.

In the spirit of Thanksgiving and throughout the year, I pray for all of the world's children, and am thankful that though we must deal with mito in our children, they have access tho medical care and treatments to buy time and hope for a cure. It occured to me the other day that mito doesn't just happen in the industrialized nations, but also in Sudan,

Bosnia, Romania, Iraq, Somalia and other countries where little or no medical treatment is available for any conditions. When we see teenagers and adults with unrepaired cleft lip/palates we are reminded of our son's journey. I am sad whenever someone has to deal with misunderstanding or lack of concern in the medical field however. I knew so much what you said you went through with the hospital. Thankfully, those experiences are usually outweighed by compassionate, concerned and dedicated physicians. We have been fortunate to consult with Dr.'s at the Cleveland clinic. 's physician was

kind and caring, putting all concerns we had prior to the appt. to rest. We also have a wonderful friend and pediatrician here at home. I had an experience similar to yours before we knew Collin had mito. We followed our neurologist's directions to take him in for fluids whenever he was ill, and he became extremely ill the same evening he had an MRI with contrast. He developed an extremely high fever, his neck was stiff and he couldn't lift his head up. He was also lethargic and had a high pitched whine (he was eight at the time), totally not his usual funny, sparkly self. He also reeked of amonia.

I followed directions, took him to Children's ER, and the resident said he was just a kid with a virus. She would not call the neurologist, or anyone else. She said I was an overprotective mother. The medical student

was concerned and said he was not neurologically well, but couldn't change the resident's mind. I brought him home and dealt with all of the setbacks for months. We learned after that he had mito. I think everyone with mito disorder has to deal with these things sadly.

I think of you often. You have your hands full, but you have your hearts full too.

I will keep praying for your children, and pray that you don't have to deal with too many

situations like that one again. It's hard enough to deal with the stress of the illness on our children, much less things like that. I miss my parents SOOO much on the holidays, I would give anything to hear their voice one more time. I know however that they are celebrating in Heaven, and Mom is standing and walking, happy and free.

Have a wonderful Thanksgiving holiday with all of your family. I hope the Lord blesses us with many more children in the coming year. Take care, JoniDarla Klein wrote:

Oh, thank you so much for your consideration. The girls are slowly recuperating. Asenath still is vomiting more than I would like and it seems like her stomach just isn't tolerating food or meds like before, so I am not sure where all this will lead to. Her eyes are definitely getting better as the days go on but she still says she "can't see" so there must be some type of residual affects going on. Not sure what though as we weren't able to get much information from the optho. doc since she didn't cooperate as well as an older child and they can't see lots of neurological issues (as we have seen several times in myself, my son, and one of my older daughters). But she is using both eyes again so vision definitely is returning to the left eye which appeared to be blind for the first 5 days after she finally

started waking up again last week. Zipporrah is also still very sensitive to her feedings and meds and we are trying to slowly increase the speed of her feedings as she has been looking like she lost some weight this week. She has been getting less than half or her normal intake thus far. She hasn't appeared to any set backs thankfully. During her hospitalization she was pretty weak and didn't walk for a couple of days but no major changes. On a positive note, I haven't mentioned to many that there was a MAJOR change in her narrow arteries that appeared in her MRA. All four of her arteries have opened about 3/4 of the way! The docs never dreamed this could happen and were only hoping they could stop further arteries from narrowing. This was only a trial as they have never had the

opportunity to treat a child with CNS Vasculitis before. Mayo has only seen it on autopsy in children. We are so happy to see the opening, but frustrated and a little confused as to the negative turn of events with this last ailment. We are not sure if this was a metabolic stroke or a vascular stroke. With the vessels opening, it would be frustrating to know they still could affect her this much! But we are still so excited that the steroids have been working. She was placed back on them at 3 ml. per day to see if the stroke episodes can stop again (as we decreased the steroids she began having episodes again). Thanks for your note. :)See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.orgDarla: mommy toAsenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency...Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) How is Asenath and Zipporah?>>>> Hey Darla,> I am just wondering how the girls are doing. I wanted to do> something for you when they were both in the hospital, my goodness> girl, that must have been a tough week! I would have brought a

meal> in, except from Ohio to Iowa it would have gotten a little cold! ;-)> We will keep you in our prayers over the holiday weekend. Joni>>>>>>> Please contact mito-owner with any problems or questions.>

[Guest guest]

Yeah!!!! I am happy for you that the steroids are helping her. It is always encouraging

when something goes the way it should isn't it? Collin has never had strokes that we know of, but he has brain involvement (atrophy of the cerebellum, herniated brainstem

and lesions), along with suspected decreased oxygen flow to the central part of his brain.

We rejoice with any good news or slowed progression of this disorder. If has mito,

at least it hasn't seemed to affect her as much as Collin. I have prayed for healing for all children with mito, and especially prayed for Asi and Porrah through this last event.

In the spirit of Thanksgiving and throughout the year, I pray for all of the world's children, and am thankful that though we must deal with mito in our children, they have access tho medical care and treatments to buy time and hope for a cure. It occured to me the other day that mito doesn't just happen in the industrialized nations, but also in Sudan,

Bosnia, Romania, Iraq, Somalia and other countries where little or no medical treatment is available for any conditions. When we see teenagers and adults with unrepaired cleft lip/palates we are reminded of our son's journey. I am sad whenever someone has to deal with misunderstanding or lack of concern in the medical field however. I knew so much what you said you went through with the hospital. Thankfully, those experiences are usually outweighed by compassionate, concerned and dedicated physicians. We have been fortunate to consult with Dr.'s at the Cleveland clinic. 's physician was

kind and caring, putting all concerns we had prior to the appt. to rest. We also have a wonderful friend and pediatrician here at home. I had an experience similar to yours before we knew Collin had mito. We followed our neurologist's directions to take him in for fluids whenever he was ill, and he became extremely ill the same evening he had an MRI with contrast. He developed an extremely high fever, his neck was stiff and he couldn't lift his head up. He was also lethargic and had a high pitched whine (he was eight at the time), totally not his usual funny, sparkly self. He also reeked of amonia.

I followed directions, took him to Children's ER, and the resident said he was just a kid with a virus. She would not call the neurologist, or anyone else. She said I was an overprotective mother. The medical student

was concerned and said he was not neurologically well, but couldn't change the resident's mind. I brought him home and dealt with all of the setbacks for months. We learned after that he had mito. I think everyone with mito disorder has to deal with these things sadly.

I think of you often. You have your hands full, but you have your hearts full too.

I will keep praying for your children, and pray that you don't have to deal with too many

situations like that one again. It's hard enough to deal with the stress of the illness on our children, much less things like that. I miss my parents SOOO much on the holidays, I would give anything to hear their voice one more time. I know however that they are celebrating in Heaven, and Mom is standing and walking, happy and free.

Have a wonderful Thanksgiving holiday with all of your family. I hope the Lord blesses us with many more children in the coming year. Take care, JoniDarla Klein wrote:

Oh, thank you so much for your consideration. The girls are slowly recuperating. Asenath still is vomiting more than I would like and it seems like her stomach just isn't tolerating food or meds like before, so I am not sure where all this will lead to. Her eyes are definitely getting better as the days go on but she still says she "can't see" so there must be some type of residual affects going on. Not sure what though as we weren't able to get much information from the optho. doc since she didn't cooperate as well as an older child and they can't see lots of neurological issues (as we have seen several times in myself, my son, and one of my older daughters). But she is using both eyes again so vision definitely is returning to the left eye which appeared to be blind for the first 5 days after she finally

started waking up again last week. Zipporrah is also still very sensitive to her feedings and meds and we are trying to slowly increase the speed of her feedings as she has been looking like she lost some weight this week. She has been getting less than half or her normal intake thus far. She hasn't appeared to any set backs thankfully. During her hospitalization she was pretty weak and didn't walk for a couple of days but no major changes. On a positive note, I haven't mentioned to many that there was a MAJOR change in her narrow arteries that appeared in her MRA. All four of her arteries have opened about 3/4 of the way! The docs never dreamed this could happen and were only hoping they could stop further arteries from narrowing. This was only a trial as they have never had the

opportunity to treat a child with CNS Vasculitis before. Mayo has only seen it on autopsy in children. We are so happy to see the opening, but frustrated and a little confused as to the negative turn of events with this last ailment. We are not sure if this was a metabolic stroke or a vascular stroke. With the vessels opening, it would be frustrating to know they still could affect her this much! But we are still so excited that the steroids have been working. She was placed back on them at 3 ml. per day to see if the stroke episodes can stop again (as we decreased the steroids she began having episodes again). Thanks for your note. :)See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into Mito using a photo collage of my girls at www.heartbeatsformito.orgDarla: mommy toAsenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID, GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency...Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) How is Asenath and Zipporah?>>>> Hey Darla,> I am just wondering how the girls are doing. I wanted to do> something for you when they were both in the hospital, my goodness> girl, that must have been a tough week! I would have brought a

meal> in, except from Ohio to Iowa it would have gotten a little cold! ;-)> We will keep you in our prayers over the holiday weekend. Joni>>>>>>> Please contact mito-owner with any problems or questions.>

[Guest guest]

Happy Thanksgiving to you as well! Thanks for your notes of encouragement.

Again, they mean a lot to me. So many here on this list have sent notes of

encouragement, phone calls, gifts, etc. to me over the last 2 weeks and it

is so neat to see how much people can care for one another. I hope I can be

as encouraging to others as you and the others have been to me.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

How is Asenath and Zipporah?

>

>

> >

> >

> >

> > Hey Darla,

> > I am just wondering how the girls are doing. I wanted to do

> > something for you when they were both in the hospital, my goodness

> > girl, that must have been a tough week! I would have brought a meal

> > in, except from Ohio to Iowa it would have gotten a little cold! ;-)

> > We will keep you in our prayers over the holiday weekend. Joni

> >

> >

> >

> >

> >

> >

> > Please contact mito-owner with any problems or

> > questions.

> >

[Guest guest]

Happy Thanksgiving to you as well! Thanks for your notes of encouragement.

Again, they mean a lot to me. So many here on this list have sent notes of

encouragement, phone calls, gifts, etc. to me over the last 2 weeks and it

is so neat to see how much people can care for one another. I hope I can be

as encouraging to others as you and the others have been to me.

See www.caringbridge.org/ia/mitomomof9 and this link to see a real look into

Mito using a photo collage of my girls at www.heartbeatsformito.org

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (12 months) Mito, strokes, neuro-motor planning dysfunction, SID,

GERD, 100% G-tube fed, asthma, trach issues, aberrant subclavian artery,

disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

How is Asenath and Zipporah?

>

>

> >

> >

> >

> > Hey Darla,

> > I am just wondering how the girls are doing. I wanted to do

> > something for you when they were both in the hospital, my goodness

> > girl, that must have been a tough week! I would have brought a meal

> > in, except from Ohio to Iowa it would have gotten a little cold! ;-)

> > We will keep you in our prayers over the holiday weekend. Joni

> >

> >

> >

> >

> >

> >

> > Please contact mito-owner with any problems or

> > questions.

> >

[Guest guest]

On a positive note, I haven't mentioned to many that there was a MAJOR change in her narrow arteries that appeared in her MRA. All four of her arteries have opened about 3/4 of the way!

Darla, This is such wonderful news! I breathed a sigh of relief for little Ase! I hope things continue to improve for her and Pooh. Hope you all had a nice Thanksgiving=)

e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)

[Guest guest]

On a positive note, I haven't mentioned to many that there was a MAJOR change in her narrow arteries that appeared in her MRA. All four of her arteries have opened about 3/4 of the way!

Darla, This is such wonderful news! I breathed a sigh of relief for little Ase! I hope things continue to improve for her and Pooh. Hope you all had a nice Thanksgiving=)

e, Chelsea's mom, Atypical Rett Syndrome (FKA nonspecific mito)