liv update

[Guest guest]

,

I know this is not where you thought you would be at this point but I must say your attitude and is amazing...Liv is lucky to have you and I know all will be fine. Home by her Birthday!

SOOOOOOOO many prayers and love and healing energy coming to you and Liv.

Connie

Liv update

Olivia has not received any correction from the halo and she has been in traction for over a month. This is proof that her spine is fused. Not the news we had hoped for, but thats life.... We have fought the good fight since diagnosis at 5 months and will continue to do the best for her. She will be 12 yrs old on Christmas Eve, so we've done good if we look at the whole picture. Its been a rough road and now perhaps after this next surgery, we can recover and rest a bit. She will have rods placed and once the doc is in, he'll fuse the rest. This will be the the biggest procedure she has ever had. I am still processing all of this and am still in shock....We have 2 choices. Do nothing and hope that her next growth spurt(s) wont increase the deformity. Or, place rods and fuse, in an attempt to keep the correction we have been able to achieve over the last decade. Remember, she had 100 degree thoracic curve at age 2. She is now 12 and in the high 60's/low 70's. If we do nothing, we may loose irretrievable ground and Im not comfortable with that. We must hold ground here for lung space...She'll transfer from the piano, to a wind instrument of her choice, once we get home and has recovered. There is a surgery cancellation next weds, and we're taking it.

My mom and brother are coming in next week, so there will always be someone by her side. My mom and I will do day and night, my bro will do midnight to 5 a.m. So grateful to have family help her (and I) get through this.

The doc and I will let here know whats up on Monday. No need to stress her out for a whole week before the biggest procedure she will ever go through. Her cousins are coming out this weekend, so she will have some fun prior to this next round of pain.

Please continue to pray and send us your strength, as we will need it for this next one.

I know she'll do good. She is sooo strong and I know we are in the right place with the best doc possible for her. This is our 2nd home and we are lucky that everyone knows her (us) so well...She will be taken care of by a team of people that truly have become like family over the last 10 years.

Home by her birthday and Christmas. Wow!

Love you all. So glad to see more families finding ISOP & CAST. So blessed to be a part of the Early Treatment movement for progressive infantile scoliosis,

Goodnight,

HRH

[Guest guest]

,

I know this is not where you thought you would be at this point but I must say your attitude and is amazing...Liv is lucky to have you and I know all will be fine. Home by her Birthday!

SOOOOOOOO many prayers and love and healing energy coming to you and Liv.

Connie

Liv update

Olivia has not received any correction from the halo and she has been in traction for over a month. This is proof that her spine is fused. Not the news we had hoped for, but thats life.... We have fought the good fight since diagnosis at 5 months and will continue to do the best for her. She will be 12 yrs old on Christmas Eve, so we've done good if we look at the whole picture. Its been a rough road and now perhaps after this next surgery, we can recover and rest a bit. She will have rods placed and once the doc is in, he'll fuse the rest. This will be the the biggest procedure she has ever had. I am still processing all of this and am still in shock....We have 2 choices. Do nothing and hope that her next growth spurt(s) wont increase the deformity. Or, place rods and fuse, in an attempt to keep the correction we have been able to achieve over the last decade. Remember, she had 100 degree thoracic curve at age 2. She is now 12 and in the high 60's/low 70's. If we do nothing, we may loose irretrievable ground and Im not comfortable with that. We must hold ground here for lung space...She'll transfer from the piano, to a wind instrument of her choice, once we get home and has recovered. There is a surgery cancellation next weds, and we're taking it.

My mom and brother are coming in next week, so there will always be someone by her side. My mom and I will do day and night, my bro will do midnight to 5 a.m. So grateful to have family help her (and I) get through this.

The doc and I will let here know whats up on Monday. No need to stress her out for a whole week before the biggest procedure she will ever go through. Her cousins are coming out this weekend, so she will have some fun prior to this next round of pain.

Please continue to pray and send us your strength, as we will need it for this next one.

I know she'll do good. She is sooo strong and I know we are in the right place with the best doc possible for her. This is our 2nd home and we are lucky that everyone knows her (us) so well...She will be taken care of by a team of people that truly have become like family over the last 10 years.

Home by her birthday and Christmas. Wow!

Love you all. So glad to see more families finding ISOP & CAST. So blessed to be a part of the Early Treatment movement for progressive infantile scoliosis,

Goodnight,

HRH

[Guest guest]

I am sorry she has to endure yet another surgery especially her most difficult. I know you are tired and worn out, but she will be fine and you will be home with her before you know it. You are both strong women and have a lot of people praying for you both. Thanks for the update and let us know more next week. God Bless Joanmom to Hayden 2 1/233 degrees1st cast down from 62 degrees Treated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Thu, November 5, 2009 12:47:14 AMSubject: Liv update

Olivia has not received any correction from the halo and she has been in traction for over a month. This is proof that her spine is fused. Not the news we had hoped for, but thats life.... We have fought the good fight since diagnosis at 5 months and will continue to do the best for her. She will be 12 yrs old on Christmas Eve, so we've done good if we look at the whole picture. Its been a rough road and now perhaps after this next surgery, we can recover and rest a bit. She will have rods placed and once the doc is in, he'll fuse the rest. This will be the the biggest procedure she has ever had. I am still processing all of this and am still in shock....We have 2 choices. Do nothing and hope that her next growth spurt(s) wont increase the deformity. Or, place rods and fuse, in an attempt to keep the correction we have been able to achieve over the last decade. Remember, she had 100 degree thoracic curve at age 2. She is now 12 and in the high

60's/low 70's. If we do nothing, we may loose irretrievable ground and Im not comfortable with that. We must hold ground here for lung space...She' ll transfer from the piano, to a wind instrument of her choice, once we get home and has recovered. There is a surgery cancellation next weds, and we're taking it. My mom and brother are coming in next week, so there will always be someone by her side. My mom and I will do day and night, my bro will do midnight to 5 a.m. So grateful to have family help her (and I) get through this.The doc and I will let here know whats up on Monday. No need to stress her out for a whole week before the biggest procedure she will ever go through. Her cousins are coming out this weekend, so she will have some fun prior to this next round of pain.Please continue to pray and send us your strength, as we will need it for this next one.I know she'll do good. She is sooo strong and I know we are in the right place

with the best doc possible for her. This is our 2nd home and we are lucky that everyone knows her (us) so well...She will be taken care of by a team of people that truly have become like family over the last 10 years.Home by her birthday and Christmas. Wow!Love you all. So glad to see more families finding ISOP & CAST. So blessed to be a part of the Early Treatment movement for progressive infantile scoliosis,Goodnight,HRH

[Guest guest]

I am sorry she has to endure yet another surgery especially her most difficult. I know you are tired and worn out, but she will be fine and you will be home with her before you know it. You are both strong women and have a lot of people praying for you both. Thanks for the update and let us know more next week. God Bless Joanmom to Hayden 2 1/233 degrees1st cast down from 62 degrees Treated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Thu, November 5, 2009 12:47:14 AMSubject: Liv update

Olivia has not received any correction from the halo and she has been in traction for over a month. This is proof that her spine is fused. Not the news we had hoped for, but thats life.... We have fought the good fight since diagnosis at 5 months and will continue to do the best for her. She will be 12 yrs old on Christmas Eve, so we've done good if we look at the whole picture. Its been a rough road and now perhaps after this next surgery, we can recover and rest a bit. She will have rods placed and once the doc is in, he'll fuse the rest. This will be the the biggest procedure she has ever had. I am still processing all of this and am still in shock....We have 2 choices. Do nothing and hope that her next growth spurt(s) wont increase the deformity. Or, place rods and fuse, in an attempt to keep the correction we have been able to achieve over the last decade. Remember, she had 100 degree thoracic curve at age 2. She is now 12 and in the high

60's/low 70's. If we do nothing, we may loose irretrievable ground and Im not comfortable with that. We must hold ground here for lung space...She' ll transfer from the piano, to a wind instrument of her choice, once we get home and has recovered. There is a surgery cancellation next weds, and we're taking it. My mom and brother are coming in next week, so there will always be someone by her side. My mom and I will do day and night, my bro will do midnight to 5 a.m. So grateful to have family help her (and I) get through this.The doc and I will let here know whats up on Monday. No need to stress her out for a whole week before the biggest procedure she will ever go through. Her cousins are coming out this weekend, so she will have some fun prior to this next round of pain.Please continue to pray and send us your strength, as we will need it for this next one.I know she'll do good. She is sooo strong and I know we are in the right place

with the best doc possible for her. This is our 2nd home and we are lucky that everyone knows her (us) so well...She will be taken care of by a team of people that truly have become like family over the last 10 years.Home by her birthday and Christmas. Wow!Love you all. So glad to see more families finding ISOP & CAST. So blessed to be a part of the Early Treatment movement for progressive infantile scoliosis,Goodnight,HRH

[Guest guest]

,

Sending you and Liv all my best- strength, hope, faith, love and continued

prayers. You both are amazing and two of the most inspirational people that I

have ever had the blessing of getting to meet. Please know that we are all here

for you to lean on.

((Hug)) ((Hug))

Tina (Mom to Sophia- 8 Mehta casts, then brace, now corrected and being

monitored and Sam- being monitored)

>

> Olivia has not received any correction from the halo and she has been in

traction for over a month. This is proof that her spine is fused. Not the news

we had hoped for, but thats life.... We have fought the good fight since

diagnosis at 5 months and will continue to do the best for her. She will be 12

yrs old on Christmas Eve, so we've done good if we look at the whole picture.

Its been a rough road and now perhaps after this next surgery, we can recover

and rest a bit. She will have rods placed and once the doc is in, he'll fuse

the rest. This will be the the biggest procedure she has ever had. I am still

processing all of this and am still in shock....We have 2 choices. Do nothing

and hope that her next growth spurt(s) wont increase the deformity. Or, place

rods and fuse, in an attempt to keep the correction we have been able to achieve

over the last decade. Remember, she had 100 degree thoracic curve at age 2.

She is now 12 and in the high 60's/low 70's. If we do nothing, we may loose

irretrievable ground and Im not comfortable with that. We must hold ground here

for lung space...She'll transfer from the piano, to a wind instrument of her

choice, once we get home and has recovered. There is a surgery cancellation

next weds, and we're taking it.

> My mom and brother are coming in next week, so there will always be someone by

her side. My mom and I will do day and night, my bro will do midnight to 5 a.m.

So grateful to have family help her (and I) get through this.

> The doc and I will let here know whats up on Monday. No need to stress her

out for a whole week before the biggest procedure she will ever go through. Her

cousins are coming out this weekend, so she will have some fun prior to this

next round of pain.

> Please continue to pray and send us your strength, as we will need it for this

next one.

> I know she'll do good. She is sooo strong and I know we are in the right

place with the best doc possible for her. This is our 2nd home and we are lucky

that everyone knows her (us) so well...She will be taken care of by a team of

people that truly have become like family over the last 10 years.

> Home by her birthday and Christmas. Wow!

> Love you all. So glad to see more families finding ISOP & CAST. So blessed

to be a part of the Early Treatment movement for progressive infantile

scoliosis,

> Goodnight,

> HRH

>

[Guest guest]

,

Sending you and Liv all my best- strength, hope, faith, love and continued

prayers. You both are amazing and two of the most inspirational people that I

have ever had the blessing of getting to meet. Please know that we are all here

for you to lean on.

((Hug)) ((Hug))

Tina (Mom to Sophia- 8 Mehta casts, then brace, now corrected and being

monitored and Sam- being monitored)

>

> Olivia has not received any correction from the halo and she has been in

traction for over a month. This is proof that her spine is fused. Not the news

we had hoped for, but thats life.... We have fought the good fight since

diagnosis at 5 months and will continue to do the best for her. She will be 12

yrs old on Christmas Eve, so we've done good if we look at the whole picture.

Its been a rough road and now perhaps after this next surgery, we can recover

and rest a bit. She will have rods placed and once the doc is in, he'll fuse

the rest. This will be the the biggest procedure she has ever had. I am still

processing all of this and am still in shock....We have 2 choices. Do nothing

and hope that her next growth spurt(s) wont increase the deformity. Or, place

rods and fuse, in an attempt to keep the correction we have been able to achieve

over the last decade. Remember, she had 100 degree thoracic curve at age 2.

She is now 12 and in the high 60's/low 70's. If we do nothing, we may loose

irretrievable ground and Im not comfortable with that. We must hold ground here

for lung space...She'll transfer from the piano, to a wind instrument of her

choice, once we get home and has recovered. There is a surgery cancellation

next weds, and we're taking it.

> My mom and brother are coming in next week, so there will always be someone by

her side. My mom and I will do day and night, my bro will do midnight to 5 a.m.

So grateful to have family help her (and I) get through this.

> The doc and I will let here know whats up on Monday. No need to stress her

out for a whole week before the biggest procedure she will ever go through. Her

cousins are coming out this weekend, so she will have some fun prior to this

next round of pain.

> Please continue to pray and send us your strength, as we will need it for this

next one.

> I know she'll do good. She is sooo strong and I know we are in the right

place with the best doc possible for her. This is our 2nd home and we are lucky

that everyone knows her (us) so well...She will be taken care of by a team of

people that truly have become like family over the last 10 years.

> Home by her birthday and Christmas. Wow!

> Love you all. So glad to see more families finding ISOP & CAST. So blessed

to be a part of the Early Treatment movement for progressive infantile

scoliosis,

> Goodnight,

> HRH

>

[Guest guest]

,

Sending you and Liv all my best- strength, hope, faith, love and continued

prayers. You both are amazing and two of the most inspirational people that I

have ever had the blessing of getting to meet. Please know that we are all here

for you to lean on.

((Hug)) ((Hug))

Tina (Mom to Sophia- 8 Mehta casts, then brace, now corrected and being

monitored and Sam- being monitored)

>

> Olivia has not received any correction from the halo and she has been in

traction for over a month. This is proof that her spine is fused. Not the news

we had hoped for, but thats life.... We have fought the good fight since

diagnosis at 5 months and will continue to do the best for her. She will be 12

yrs old on Christmas Eve, so we've done good if we look at the whole picture.

Its been a rough road and now perhaps after this next surgery, we can recover

and rest a bit. She will have rods placed and once the doc is in, he'll fuse

the rest. This will be the the biggest procedure she has ever had. I am still

processing all of this and am still in shock....We have 2 choices. Do nothing

and hope that her next growth spurt(s) wont increase the deformity. Or, place

rods and fuse, in an attempt to keep the correction we have been able to achieve

over the last decade. Remember, she had 100 degree thoracic curve at age 2.

She is now 12 and in the high 60's/low 70's. If we do nothing, we may loose

irretrievable ground and Im not comfortable with that. We must hold ground here

for lung space...She'll transfer from the piano, to a wind instrument of her

choice, once we get home and has recovered. There is a surgery cancellation

next weds, and we're taking it.

> My mom and brother are coming in next week, so there will always be someone by

her side. My mom and I will do day and night, my bro will do midnight to 5 a.m.

So grateful to have family help her (and I) get through this.

> The doc and I will let here know whats up on Monday. No need to stress her

out for a whole week before the biggest procedure she will ever go through. Her

cousins are coming out this weekend, so she will have some fun prior to this

next round of pain.

> Please continue to pray and send us your strength, as we will need it for this

next one.

> I know she'll do good. She is sooo strong and I know we are in the right

place with the best doc possible for her. This is our 2nd home and we are lucky

that everyone knows her (us) so well...She will be taken care of by a team of

people that truly have become like family over the last 10 years.

> Home by her birthday and Christmas. Wow!

> Love you all. So glad to see more families finding ISOP & CAST. So blessed

to be a part of the Early Treatment movement for progressive infantile

scoliosis,

> Goodnight,

> HRH

>

[Guest guest]

,

I am without words....just know we all love and pray for you both! Hang in there. You are just in the middle of the hard part. It will get better!

My heart just hurts for you both so much.

Love to you both,

Subject: Liv updateTo: infantile_scoliosis Date: Saturday, November 14, 2009, 5:20 PM

Whew! Out of SCU as of last night. This is so hard. The surgery was Weds from 145 pm, and she was rolled back into SCU at 800pm. She lost a significant amount of blood due to the Ehlers Danlos, so no osteomoties were done. She was fused entirely and the dual rods go from C-1 to L-4. She was made to dangle/sit from bed Thurs. twice. Yesterday, she sat in a wheelchair twice for 20 mins, and today walking 10 steps and sitting in chair 30 mins, twice. She is also doing breathing exercises every 2 hrs (24/7) on a spirometer and being turned every 2 hrs...Now, she is sleeping. As you can imagine, she screams the whole time........ And, says things like: "Well, I just want everyone in this friggin room to know that you are damaging me physically, emotionally and psychologically! !!!!!! She is very vocal, which is good for her lungs, but very hard for a parent to endure. I think besides the FULL ON pain, she focuses on the anticipation/ fear of more pain.

Not to mention the effects of all the drugs. I cant even make a move in the room or she starts screaming that we are trying to hurt/kill her by ripping out her catheter or the IV's.....She is so scared. I know you all have been pulling for my girl and I just want to say thank you. I'll post more when I can and hope that everyone is doing well. If you need me, call me. I check messages when possible and will return calls as soon as possible. I am screening more new members, and am so grateful that they have you all to guide them, appropriately.Lots of love,HRHBTW, I am documenting this horror to show what happens when babies are NOT offered/given Early Treatment with Mehtas Method.

[Guest guest]

I can't even imagine how painful this is for Olivia, you, , and your whole family to endure. I just got home and saw this after updating on Facebook, I'm so sorry if that post seems so incongruous after reading this. A lot of it I knew from our conversation, but what you wrote about the anticipation/fear of more pain...Jesus! Can I say that here? Just please, God, do not let Olivia suffer any more pain! EVER!!! I can't believe that you can think of anyone else at a time like tihis, but that is who you are. It is so rare.

Your love is a beacon of light- and YES, SO IS YOUR ANGER!!!! We love that about you!!! You and Liv have my utmost admiration- I just want her to be out of pain and be well. I hope I can write your story someday, with a very happy ending.

In Love and Gratitude,

Heidi, Nick and Bexon Heidi, Bexon's Mama, (2 years old, in 4th cast from Salt Lake City Shriners, currently down from 61 degrees to 21)

To: infantile_scoliosis Sent: Sat, November 14, 2009 3:20:56 PMSubject: Liv update

Whew! Out of SCU as of last night. This is so hard. The surgery was Weds from 145 pm, and she was rolled back into SCU at 800pm. She lost a significant amount of blood due to the Ehlers Danlos, so no osteomoties were done. She was fused entirely and the dual rods go from C-1 to L-4. She was made to dangle/sit from bed Thurs. twice. Yesterday, she sat in a wheelchair twice for 20 mins, and today walking 10 steps and sitting in chair 30 mins, twice. She is also doing breathing exercises every 2 hrs (24/7) on a spirometer and being turned every 2 hrs...Now, she is sleeping. As you can imagine, she screams the whole time........ And, says things like: "Well, I just want everyone in this friggin room to know that you are damaging me physically, emotionally and psychologically! !!!!!! She is very vocal, which is good for her lungs, but very hard for a parent to endure. I think besides the FULL ON pain, she focuses on the anticipation/ fear of more pain. Not

to mention the effects of all the drugs. I cant even make a move in the room or she starts screaming that we are trying to hurt/kill her by ripping out her catheter or the IV's.....She is so scared. I know you all have been pulling for my girl and I just want to say thank you. I'll post more when I can and hope that everyone is doing well. If you need me, call me. I check messages when possible and will return calls as soon as possible. I am screening more new members, and am so grateful that they have you all to guide them, appropriately.Lots of love,HRHBTW, I am documenting this horror to show what happens when babies are NOT offered/given Early Treatment with Mehtas Method.

[Guest guest]

I can't even imagine how painful this is for Olivia, you, , and your whole family to endure. I just got home and saw this after updating on Facebook, I'm so sorry if that post seems so incongruous after reading this. A lot of it I knew from our conversation, but what you wrote about the anticipation/fear of more pain...Jesus! Can I say that here? Just please, God, do not let Olivia suffer any more pain! EVER!!! I can't believe that you can think of anyone else at a time like tihis, but that is who you are. It is so rare.

Your love is a beacon of light- and YES, SO IS YOUR ANGER!!!! We love that about you!!! You and Liv have my utmost admiration- I just want her to be out of pain and be well. I hope I can write your story someday, with a very happy ending.

In Love and Gratitude,

Heidi, Nick and Bexon Heidi, Bexon's Mama, (2 years old, in 4th cast from Salt Lake City Shriners, currently down from 61 degrees to 21)

To: infantile_scoliosis Sent: Sat, November 14, 2009 3:20:56 PMSubject: Liv update

Whew! Out of SCU as of last night. This is so hard. The surgery was Weds from 145 pm, and she was rolled back into SCU at 800pm. She lost a significant amount of blood due to the Ehlers Danlos, so no osteomoties were done. She was fused entirely and the dual rods go from C-1 to L-4. She was made to dangle/sit from bed Thurs. twice. Yesterday, she sat in a wheelchair twice for 20 mins, and today walking 10 steps and sitting in chair 30 mins, twice. She is also doing breathing exercises every 2 hrs (24/7) on a spirometer and being turned every 2 hrs...Now, she is sleeping. As you can imagine, she screams the whole time........ And, says things like: "Well, I just want everyone in this friggin room to know that you are damaging me physically, emotionally and psychologically! !!!!!! She is very vocal, which is good for her lungs, but very hard for a parent to endure. I think besides the FULL ON pain, she focuses on the anticipation/ fear of more pain. Not

to mention the effects of all the drugs. I cant even make a move in the room or she starts screaming that we are trying to hurt/kill her by ripping out her catheter or the IV's.....She is so scared. I know you all have been pulling for my girl and I just want to say thank you. I'll post more when I can and hope that everyone is doing well. If you need me, call me. I check messages when possible and will return calls as soon as possible. I am screening more new members, and am so grateful that they have you all to guide them, appropriately.Lots of love,HRHBTW, I am documenting this horror to show what happens when babies are NOT offered/given Early Treatment with Mehtas Method.

[Guest guest]

I can't even imagine how painful this is for Olivia, you, , and your whole family to endure. I just got home and saw this after updating on Facebook, I'm so sorry if that post seems so incongruous after reading this. A lot of it I knew from our conversation, but what you wrote about the anticipation/fear of more pain...Jesus! Can I say that here? Just please, God, do not let Olivia suffer any more pain! EVER!!! I can't believe that you can think of anyone else at a time like tihis, but that is who you are. It is so rare.

Your love is a beacon of light- and YES, SO IS YOUR ANGER!!!! We love that about you!!! You and Liv have my utmost admiration- I just want her to be out of pain and be well. I hope I can write your story someday, with a very happy ending.

In Love and Gratitude,

Heidi, Nick and Bexon Heidi, Bexon's Mama, (2 years old, in 4th cast from Salt Lake City Shriners, currently down from 61 degrees to 21)

To: infantile_scoliosis Sent: Sat, November 14, 2009 3:20:56 PMSubject: Liv update

Whew! Out of SCU as of last night. This is so hard. The surgery was Weds from 145 pm, and she was rolled back into SCU at 800pm. She lost a significant amount of blood due to the Ehlers Danlos, so no osteomoties were done. She was fused entirely and the dual rods go from C-1 to L-4. She was made to dangle/sit from bed Thurs. twice. Yesterday, she sat in a wheelchair twice for 20 mins, and today walking 10 steps and sitting in chair 30 mins, twice. She is also doing breathing exercises every 2 hrs (24/7) on a spirometer and being turned every 2 hrs...Now, she is sleeping. As you can imagine, she screams the whole time........ And, says things like: "Well, I just want everyone in this friggin room to know that you are damaging me physically, emotionally and psychologically! !!!!!! She is very vocal, which is good for her lungs, but very hard for a parent to endure. I think besides the FULL ON pain, she focuses on the anticipation/ fear of more pain. Not

to mention the effects of all the drugs. I cant even make a move in the room or she starts screaming that we are trying to hurt/kill her by ripping out her catheter or the IV's.....She is so scared. I know you all have been pulling for my girl and I just want to say thank you. I'll post more when I can and hope that everyone is doing well. If you need me, call me. I check messages when possible and will return calls as soon as possible. I am screening more new members, and am so grateful that they have you all to guide them, appropriately.Lots of love,HRHBTW, I am documenting this horror to show what happens when babies are NOT offered/given Early Treatment with Mehtas Method.

[Guest guest]

OMG ! You are both so amazing that in the midst of this you are still documenting your experiences! Over and over, I am sending my love, styrength and prayers..... The words simply aren't adequate to describe what I am feeling for both of you right now. I know that you will both be okay, but I am shuddering at what you are describing..... And both grateful and guilty that I may have been able to escape this experience myself. All our love.....- Noelle's mommy, 3 years oldRochester NYCasted 8 times for 1 1/2 years and in first brace!reflux, mild plagiocephaly, mild torticollos, hypotonia, ligament laxity, suspected Ehler's Danlos III

Subject: Liv updateTo: infantile_scoliosis Date: Saturday, November 14, 2009, 11:20 PM

Whew! Out of SCU as of last night. This is so hard. The surgery was Weds from 145 pm, and she was rolled back into SCU at 800pm. She lost a significant amount of blood due to the Ehlers Danlos, so no osteomoties were done. She was fused entirely and the dual rods go from C-1 to L-4. She was made to dangle/sit from bed Thurs. twice. Yesterday, she sat in a wheelchair twice for 20 mins, and today walking 10 steps and sitting in chair 30 mins, twice. She is also doing breathing exercises every 2 hrs (24/7) on a spirometer and being turned every 2 hrs...Now, she is sleeping. As you can imagine, she screams the whole time........ And, says things like: "Well, I just want everyone in this friggin room to know that you are damaging me physically, emotionally and psychologically! !!!!!! She is very vocal, which is good for her lungs, but very hard for a parent to endure. I think besides the FULL ON pain, she focuses on the anticipation/ fear of more pain.

Not to mention the effects of all the drugs. I cant even make a move in the room or she starts screaming that we are trying to hurt/kill her by ripping out her catheter or the IV's.....She is so scared. I know you all have been pulling for my girl and I just want to say thank you. I'll post more when I can and hope that everyone is doing well. If you need me, call me. I check messages when possible and will return calls as soon as possible. I am screening more new members, and am so grateful that they have you all to guide them, appropriately.Lots of love,HRHBTW, I am documenting this horror to show what happens when babies are NOT offered/given Early Treatment with Mehtas Method.

[Guest guest]

Wow, and Liv I can't even begin to imagine what you are going through! Liv being 11 and knowing what's going on has to be hard on the both of you. We are all praying and thinking of you two constantly. It's because of you and Liv that our babies don't have to eventually go thru that and although we are very thankful I'm so sorry that you do have to endure it. I will continue to pray for the best possible outcome and that things continue to go well. She's strong and she's a fighter so she'll pull through. It was a pleasure meeting you if only for a brief few minutes. I know it was a difficult time, but it was nice to finally hug the woman who saved my little girl. Liv is beautiful! Please know we are all here for you.

(mother to - 17 months old - in 1st brace fr SLC)

Subject: Liv updateTo: infantile_scoliosis Date: Saturday, November 14, 2009, 6:20 PM

Whew! Out of SCU as of last night. This is so hard. The surgery was Weds from 145 pm, and she was rolled back into SCU at 800pm. She lost a significant amount of blood due to the Ehlers Danlos, so no osteomoties were done. She was fused entirely and the dual rods go from C-1 to L-4. She was made to dangle/sit from bed Thurs. twice. Yesterday, she sat in a wheelchair twice for 20 mins, and today walking 10 steps and sitting in chair 30 mins, twice. She is also doing breathing exercises every 2 hrs (24/7) on a spirometer and being turned every 2 hrs...Now, she is sleeping. As you can imagine, she screams the whole time........ And, says things like: "Well, I just want everyone in this friggin room to know that you are damaging me physically, emotionally and psychologically! !!!!!! She is very vocal, which is good for her lungs, but very hard for a parent to endure. I think besides the FULL ON pain, she focuses on the anticipation/ fear of more pain.

Not to mention the effects of all the drugs. I cant even make a move in the room or she starts screaming that we are trying to hurt/kill her by ripping out her catheter or the IV's.....She is so scared. I know you all have been pulling for my girl and I just want to say thank you. I'll post more when I can and hope that everyone is doing well. If you need me, call me. I check messages when possible and will return calls as soon as possible. I am screening more new members, and am so grateful that they have you all to guide them, appropriately.Lots of love,HRHBTW, I am documenting this horror to show what happens when babies are NOT offered/given Early Treatment with Mehtas Method.

[Guest guest]

Wow, and Liv I can't even begin to imagine what you are going through! Liv being 11 and knowing what's going on has to be hard on the both of you. We are all praying and thinking of you two constantly. It's because of you and Liv that our babies don't have to eventually go thru that and although we are very thankful I'm so sorry that you do have to endure it. I will continue to pray for the best possible outcome and that things continue to go well. She's strong and she's a fighter so she'll pull through. It was a pleasure meeting you if only for a brief few minutes. I know it was a difficult time, but it was nice to finally hug the woman who saved my little girl. Liv is beautiful! Please know we are all here for you.

(mother to - 17 months old - in 1st brace fr SLC)

Subject: Liv updateTo: infantile_scoliosis Date: Saturday, November 14, 2009, 6:20 PM

Whew! Out of SCU as of last night. This is so hard. The surgery was Weds from 145 pm, and she was rolled back into SCU at 800pm. She lost a significant amount of blood due to the Ehlers Danlos, so no osteomoties were done. She was fused entirely and the dual rods go from C-1 to L-4. She was made to dangle/sit from bed Thurs. twice. Yesterday, she sat in a wheelchair twice for 20 mins, and today walking 10 steps and sitting in chair 30 mins, twice. She is also doing breathing exercises every 2 hrs (24/7) on a spirometer and being turned every 2 hrs...Now, she is sleeping. As you can imagine, she screams the whole time........ And, says things like: "Well, I just want everyone in this friggin room to know that you are damaging me physically, emotionally and psychologically! !!!!!! She is very vocal, which is good for her lungs, but very hard for a parent to endure. I think besides the FULL ON pain, she focuses on the anticipation/ fear of more pain.

Not to mention the effects of all the drugs. I cant even make a move in the room or she starts screaming that we are trying to hurt/kill her by ripping out her catheter or the IV's.....She is so scared. I know you all have been pulling for my girl and I just want to say thank you. I'll post more when I can and hope that everyone is doing well. If you need me, call me. I check messages when possible and will return calls as soon as possible. I am screening more new members, and am so grateful that they have you all to guide them, appropriately.Lots of love,HRHBTW, I am documenting this horror to show what happens when babies are NOT offered/given Early Treatment with Mehtas Method.

[Guest guest]

Wow, and Liv I can't even begin to imagine what you are going through! Liv being 11 and knowing what's going on has to be hard on the both of you. We are all praying and thinking of you two constantly. It's because of you and Liv that our babies don't have to eventually go thru that and although we are very thankful I'm so sorry that you do have to endure it. I will continue to pray for the best possible outcome and that things continue to go well. She's strong and she's a fighter so she'll pull through. It was a pleasure meeting you if only for a brief few minutes. I know it was a difficult time, but it was nice to finally hug the woman who saved my little girl. Liv is beautiful! Please know we are all here for you.

(mother to - 17 months old - in 1st brace fr SLC)

Subject: Liv updateTo: infantile_scoliosis Date: Saturday, November 14, 2009, 6:20 PM

Whew! Out of SCU as of last night. This is so hard. The surgery was Weds from 145 pm, and she was rolled back into SCU at 800pm. She lost a significant amount of blood due to the Ehlers Danlos, so no osteomoties were done. She was fused entirely and the dual rods go from C-1 to L-4. She was made to dangle/sit from bed Thurs. twice. Yesterday, she sat in a wheelchair twice for 20 mins, and today walking 10 steps and sitting in chair 30 mins, twice. She is also doing breathing exercises every 2 hrs (24/7) on a spirometer and being turned every 2 hrs...Now, she is sleeping. As you can imagine, she screams the whole time........ And, says things like: "Well, I just want everyone in this friggin room to know that you are damaging me physically, emotionally and psychologically! !!!!!! She is very vocal, which is good for her lungs, but very hard for a parent to endure. I think besides the FULL ON pain, she focuses on the anticipation/ fear of more pain.

Not to mention the effects of all the drugs. I cant even make a move in the room or she starts screaming that we are trying to hurt/kill her by ripping out her catheter or the IV's.....She is so scared. I know you all have been pulling for my girl and I just want to say thank you. I'll post more when I can and hope that everyone is doing well. If you need me, call me. I check messages when possible and will return calls as soon as possible. I am screening more new members, and am so grateful that they have you all to guide them, appropriately.Lots of love,HRHBTW, I am documenting this horror to show what happens when babies are NOT offered/given Early Treatment with Mehtas Method.

[Guest guest]

I know it is the hardest thing to watch your daughter suffer like this, and I am sorry you both have to endure all this horror. Hoping each day she will get stronger and have absolutely NO pain. Thank you for the update and stay strong.. Much love and prayers to you both. Joanmom to Hayden 2 1/233 degrees1st cast down from 62 degrees Treated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Sat, November 14, 2009 5:20:56 PMSubject: Liv update

Whew! Out of SCU as of last night. This is so hard. The surgery was Weds from 145 pm, and she was rolled back into SCU at 800pm. She lost a significant amount of blood due to the Ehlers Danlos, so no osteomoties were done. She was fused entirely and the dual rods go from C-1 to L-4. She was made to dangle/sit from bed Thurs. twice. Yesterday, she sat in a wheelchair twice for 20 mins, and today walking 10 steps and sitting in chair 30 mins, twice. She is also doing breathing exercises every 2 hrs (24/7) on a spirometer and being turned every 2 hrs...Now, she is sleeping. As you can imagine, she screams the whole time........ And, says things like: "Well, I just want everyone in this friggin room to know that you are damaging me physically, emotionally and psychologically! !!!!!! She is very vocal, which is good for her lungs, but very hard for a parent to endure. I think besides the FULL ON pain, she focuses on the anticipation/ fear of more pain. Not

to mention the effects of all the drugs. I cant even make a move in the room or she starts screaming that we are trying to hurt/kill her by ripping out her catheter or the IV's.....She is so scared. I know you all have been pulling for my girl and I just want to say thank you. I'll post more when I can and hope that everyone is doing well. If you need me, call me. I check messages when possible and will return calls as soon as possible. I am screening more new members, and am so grateful that they have you all to guide them, appropriately.Lots of love,HRHBTW, I am documenting this horror to show what happens when babies are NOT offered/given Early Treatment with Mehtas Method.

[Guest guest]

I know it is the hardest thing to watch your daughter suffer like this, and I am sorry you both have to endure all this horror. Hoping each day she will get stronger and have absolutely NO pain. Thank you for the update and stay strong.. Much love and prayers to you both. Joanmom to Hayden 2 1/233 degrees1st cast down from 62 degrees Treated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Sat, November 14, 2009 5:20:56 PMSubject: Liv update

Whew! Out of SCU as of last night. This is so hard. The surgery was Weds from 145 pm, and she was rolled back into SCU at 800pm. She lost a significant amount of blood due to the Ehlers Danlos, so no osteomoties were done. She was fused entirely and the dual rods go from C-1 to L-4. She was made to dangle/sit from bed Thurs. twice. Yesterday, she sat in a wheelchair twice for 20 mins, and today walking 10 steps and sitting in chair 30 mins, twice. She is also doing breathing exercises every 2 hrs (24/7) on a spirometer and being turned every 2 hrs...Now, she is sleeping. As you can imagine, she screams the whole time........ And, says things like: "Well, I just want everyone in this friggin room to know that you are damaging me physically, emotionally and psychologically! !!!!!! She is very vocal, which is good for her lungs, but very hard for a parent to endure. I think besides the FULL ON pain, she focuses on the anticipation/ fear of more pain. Not

to mention the effects of all the drugs. I cant even make a move in the room or she starts screaming that we are trying to hurt/kill her by ripping out her catheter or the IV's.....She is so scared. I know you all have been pulling for my girl and I just want to say thank you. I'll post more when I can and hope that everyone is doing well. If you need me, call me. I check messages when possible and will return calls as soon as possible. I am screening more new members, and am so grateful that they have you all to guide them, appropriately.Lots of love,HRHBTW, I am documenting this horror to show what happens when babies are NOT offered/given Early Treatment with Mehtas Method.

[Guest guest]

I know it is the hardest thing to watch your daughter suffer like this, and I am sorry you both have to endure all this horror. Hoping each day she will get stronger and have absolutely NO pain. Thank you for the update and stay strong.. Much love and prayers to you both. Joanmom to Hayden 2 1/233 degrees1st cast down from 62 degrees Treated at ish Rite Hospital Dallas, TX

To: infantile_scoliosis Sent: Sat, November 14, 2009 5:20:56 PMSubject: Liv update

Whew! Out of SCU as of last night. This is so hard. The surgery was Weds from 145 pm, and she was rolled back into SCU at 800pm. She lost a significant amount of blood due to the Ehlers Danlos, so no osteomoties were done. She was fused entirely and the dual rods go from C-1 to L-4. She was made to dangle/sit from bed Thurs. twice. Yesterday, she sat in a wheelchair twice for 20 mins, and today walking 10 steps and sitting in chair 30 mins, twice. She is also doing breathing exercises every 2 hrs (24/7) on a spirometer and being turned every 2 hrs...Now, she is sleeping. As you can imagine, she screams the whole time........ And, says things like: "Well, I just want everyone in this friggin room to know that you are damaging me physically, emotionally and psychologically! !!!!!! She is very vocal, which is good for her lungs, but very hard for a parent to endure. I think besides the FULL ON pain, she focuses on the anticipation/ fear of more pain. Not

to mention the effects of all the drugs. I cant even make a move in the room or she starts screaming that we are trying to hurt/kill her by ripping out her catheter or the IV's.....She is so scared. I know you all have been pulling for my girl and I just want to say thank you. I'll post more when I can and hope that everyone is doing well. If you need me, call me. I check messages when possible and will return calls as soon as possible. I am screening more new members, and am so grateful that they have you all to guide them, appropriately.Lots of love,HRHBTW, I am documenting this horror to show what happens when babies are NOT offered/given Early Treatment with Mehtas Method.

[Guest guest]

I just want to cry thinking of how scared she is and how much pain she is enduring. I hope and pray that she won't have to go through anything like this again. Love and hugs to you both.

Noelle (12-2-01)

Ian (8-15-04)

To: infantile_scoliosis Sent: Sat, November 14, 2009 6:20:56 PMSubject: Liv update

Whew! Out of SCU as of last night. This is so hard. The surgery was Weds from 145 pm, and she was rolled back into SCU at 800pm. She lost a significant amount of blood due to the Ehlers Danlos, so no osteomoties were done. She was fused entirely and the dual rods go from C-1 to L-4. She was made to dangle/sit from bed Thurs. twice. Yesterday, she sat in a wheelchair twice for 20 mins, and today walking 10 steps and sitting in chair 30 mins, twice. She is also doing breathing exercises every 2 hrs (24/7) on a spirometer and being turned every 2 hrs...Now, she is sleeping. As you can imagine, she screams the whole time........ And, says things like: "Well, I just want everyone in this friggin room to know that you are damaging me physically, emotionally and psychologically! !!!!!! She is very vocal, which is good for her lungs, but very hard for a parent to endure. I think besides the FULL ON pain, she focuses on the anticipation/ fear of more pain. Not

to mention the effects of all the drugs. I cant even make a move in the room or she starts screaming that we are trying to hurt/kill her by ripping out her catheter or the IV's.....She is so scared. I know you all have been pulling for my girl and I just want to say thank you. I'll post more when I can and hope that everyone is doing well. If you need me, call me. I check messages when possible and will return calls as soon as possible. I am screening more new members, and am so grateful that they have you all to guide them, appropriately.Lots of love,HRHBTW, I am documenting this horror to show what happens when babies are NOT offered/given Early Treatment with Mehtas Method.

[Guest guest]

I just want to cry thinking of how scared she is and how much pain she is enduring. I hope and pray that she won't have to go through anything like this again. Love and hugs to you both.

Noelle (12-2-01)

Ian (8-15-04)

To: infantile_scoliosis Sent: Sat, November 14, 2009 6:20:56 PMSubject: Liv update

Whew! Out of SCU as of last night. This is so hard. The surgery was Weds from 145 pm, and she was rolled back into SCU at 800pm. She lost a significant amount of blood due to the Ehlers Danlos, so no osteomoties were done. She was fused entirely and the dual rods go from C-1 to L-4. She was made to dangle/sit from bed Thurs. twice. Yesterday, she sat in a wheelchair twice for 20 mins, and today walking 10 steps and sitting in chair 30 mins, twice. She is also doing breathing exercises every 2 hrs (24/7) on a spirometer and being turned every 2 hrs...Now, she is sleeping. As you can imagine, she screams the whole time........ And, says things like: "Well, I just want everyone in this friggin room to know that you are damaging me physically, emotionally and psychologically! !!!!!! She is very vocal, which is good for her lungs, but very hard for a parent to endure. I think besides the FULL ON pain, she focuses on the anticipation/ fear of more pain. Not

to mention the effects of all the drugs. I cant even make a move in the room or she starts screaming that we are trying to hurt/kill her by ripping out her catheter or the IV's.....She is so scared. I know you all have been pulling for my girl and I just want to say thank you. I'll post more when I can and hope that everyone is doing well. If you need me, call me. I check messages when possible and will return calls as soon as possible. I am screening more new members, and am so grateful that they have you all to guide them, appropriately.Lots of love,HRHBTW, I am documenting this horror to show what happens when babies are NOT offered/given Early Treatment with Mehtas Method.

[Guest guest]

I just want to cry thinking of how scared she is and how much pain she is enduring. I hope and pray that she won't have to go through anything like this again. Love and hugs to you both.

Noelle (12-2-01)

Ian (8-15-04)

To: infantile_scoliosis Sent: Sat, November 14, 2009 6:20:56 PMSubject: Liv update

Whew! Out of SCU as of last night. This is so hard. The surgery was Weds from 145 pm, and she was rolled back into SCU at 800pm. She lost a significant amount of blood due to the Ehlers Danlos, so no osteomoties were done. She was fused entirely and the dual rods go from C-1 to L-4. She was made to dangle/sit from bed Thurs. twice. Yesterday, she sat in a wheelchair twice for 20 mins, and today walking 10 steps and sitting in chair 30 mins, twice. She is also doing breathing exercises every 2 hrs (24/7) on a spirometer and being turned every 2 hrs...Now, she is sleeping. As you can imagine, she screams the whole time........ And, says things like: "Well, I just want everyone in this friggin room to know that you are damaging me physically, emotionally and psychologically! !!!!!! She is very vocal, which is good for her lungs, but very hard for a parent to endure. I think besides the FULL ON pain, she focuses on the anticipation/ fear of more pain. Not

to mention the effects of all the drugs. I cant even make a move in the room or she starts screaming that we are trying to hurt/kill her by ripping out her catheter or the IV's.....She is so scared. I know you all have been pulling for my girl and I just want to say thank you. I'll post more when I can and hope that everyone is doing well. If you need me, call me. I check messages when possible and will return calls as soon as possible. I am screening more new members, and am so grateful that they have you all to guide them, appropriately.Lots of love,HRHBTW, I am documenting this horror to show what happens when babies are NOT offered/given Early Treatment with Mehtas Method.

[Guest guest]

Praying now for homeward bound!!!!So good to hear she is doing better. Keep us posted when you can. TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantilescoliosis.org/stories.htmlFrom: "heather@..." To: infantile_scoliosis Sent: Sat, November 21, 2009 12:46:41 AMSubject: Liv update

I think we may be heading home next week! Liv is walking and doing well, besides nerve pain. Not sure when I posted the last update (last week was a blur), and am super tired, right now.......But, all is well.

Hope and pray she continues in this direction and will let you know when discharge papers have been signed. Cross your fingers that we are out of here next week. Its been 2 months and its time to go home.

Hope all is well with our littles.

Love,

HRH

[Guest guest]

Praying now for homeward bound!!!!So good to hear she is doing better. Keep us posted when you can. TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantilescoliosis.org/stories.htmlFrom: "heather@..." To: infantile_scoliosis Sent: Sat, November 21, 2009 12:46:41 AMSubject: Liv update

I think we may be heading home next week! Liv is walking and doing well, besides nerve pain. Not sure when I posted the last update (last week was a blur), and am super tired, right now.......But, all is well.

Hope and pray she continues in this direction and will let you know when discharge papers have been signed. Cross your fingers that we are out of here next week. Its been 2 months and its time to go home.

Hope all is well with our littles.

Love,

HRH

[Guest guest]

Praying now for homeward bound!!!!So good to hear she is doing better. Keep us posted when you can. TashaMommy of 4 year old twin boys- and Fort Worth, TexasSeries of 6 casts for 14 months and now in a night brace. is treated at Texas ish Rite Hospital.You can read 's story at....http://www.infantilescoliosis.org/stories.htmlFrom: "heather@..." To: infantile_scoliosis Sent: Sat, November 21, 2009 12:46:41 AMSubject: Liv update

I think we may be heading home next week! Liv is walking and doing well, besides nerve pain. Not sure when I posted the last update (last week was a blur), and am super tired, right now.......But, all is well.

Hope and pray she continues in this direction and will let you know when discharge papers have been signed. Cross your fingers that we are out of here next week. Its been 2 months and its time to go home.

Hope all is well with our littles.

Love,

HRH

[Guest guest]

,

Thanks for the update. Glad to hear that Liv is doing well...Praying that the nerve pain goes away quickly.

Hope you get home by Thanksgiving.

Love to the both of you,

Connie

Liv update

I think we may be heading home next week! Liv is walking and doing well, besides nerve pain. Not sure when I posted the last update (last week was a blur), and am super tired, right now.......But, all is well.

Hope and pray she continues in this direction and will let you know when discharge papers have been signed. Cross your fingers that we are out of here next week. Its been 2 months and its time to go home.

Hope all is well with our littles.

Love,

HRH