Re: Thanks Shellie

[Guest guest]

Hi Meg,

Our home email is tgranite@... be sure to put your name in the subject bar. My husband is very careful about viruses and dumps vague emails. :0) Talk to you soon. Thanks for the prayers. They're the best!!!!!!!

ShellieMeg Wirantono <mdco@...> wrote:

Hi Shellie,

Thank you for your advice and info. I am glad that you have everything scheduled. We would love to meet you too. If you would like to forward me your own email address, I will leave you with our home ph#. Give us a call when you have time or when we can be of any help during your stay in Denver. We will pray for you and Moriah. God bless you both.

Meg

-----Original Message-----From: Shellie Grant [mailto:shelliegrant@...] Sent: Saturday, March 20, 2004 4:42 PMinfantile scoliosis treatment Subject: Re: To Shellie, To

Meg

Hi Meg,

I would love to meet you guys when we get to Denver. We will be there Wed. April 28th by the evening. Mo has pre-op appts on Thurs. and Fri. Her surgery will be bright and early Monday morning (May 3rd). I expect us to be in Denver at least two weeks. They may have to fly her to Wichita again after that. It depends on if she needs to be sent home on the ventilator again.

You sound like you have your hands full! As far as symptoms, I think decrease in energy, acting lethargic, (Moriah was very pale and her lips were bluish (maybe due to her heart condition also)). A SAT monitior might not be a bad idea if you have access to one. Just explain to your doctor that scoliosis causes Restrictive Lung Disease. Ask them to write a perscription for a SAT monitor specifying what SAT levels he or she wants Daryll to stay within. Talk about the need for oxygen and at what setting. Then you can spot check a few times a day. If he stays low consistently the oxygen will help. We noticed that Mo had more trouble at night. SATs drop normally when we sleep, but with the lung restriction it can go lower, especially depending on what side he sleeps on. Mo sleeps with her SAT

monitor on, and a liter of O2.

When do you get to go to Utah? I hope soon. Keep me posted. I hope to have internet access in Denver through the hospital or Mc. We have 5 more weeks to go. I'm anxious to get into the halo and get used to life with it again. ON the other hand though we are spending all our time outside and going places Mo won't be able to go once she has her "crown" on.

I'm looking forward to meeting you. Keep up the good work with Daryll. You're informed early, and that makes me smile. You can avoid some of the mistakes we made.

:)Shellie

Meg Wirantono <mdco@...> wrote:

Hi Shellie,

I am sorry. I am not able to get back to you sooner. I am trying to keep up with Darryl’s appointments and his hourly feeding.

Last night, I read Moriah’s story again in ’s site, I can’t believe that she had to redo it for almost every 2 years.

She is really a very strong girl. Thank you again for sharing her story. It really helps us to think over and over again before accepting any suggestion for fusion surgery. We do have a big hope on cast treatment because Darryl has a severe kyphosis too. I am just wondering what kind of symptoms we should watch before the lung gets crushed by the curve of the spine? Do we need to put on an Oxygen level monitor? I hope his curve won’t grow too fast until we manage to take him to Utah for that cast treatment

[Guest guest]

Kelli,

Yes, they were unable to accept her due to the degree of kyphosis, and her rigid fusion. I don't know now whether they would consider her again. Her kyphosis is greatly decrease thru traction, but the hemis etc. might cause problems. We will check with them again just to be sure once we get all the info together about Moriah. Best to you and Santiago. Enjoy meeting with . She is wonderful. Wish I could go back and see her.

Shelliekelli peasley <santiamor2002@...> wrote:

ThanksShellie for all that great info on Dr. ,

Sounds like you have had some great experiences with them. You mentioned that they couldn't accept youyet, why was that? I imagine that with the VEPTR you have to have a certain type of curve etc.. Good luck to you and I appreciate all theinfo.

Take care,

Kelli and Santiago

Just wanted to put my 2 cents in re: Texas. I think they are wonderful. We took Moriah for an assessment in Jan. They were unable to accept her at that point, but it may still be an option for her. The best thing about them in my opinion is their thoroughness. She had a lot of different radiology done so they could know as much about her spine as possible. I just requested her info and they sent it plus all the radiology for free. After reading their reports we are discovering things about Moriah's spine that no one has told us about before. I am thankful we had her assessed so we could catch this misdiagnosis and have time to turn in a right direction for her treatment. I would definitely look into it. As someone else said, go to the links section. Best wishes to you and Santiago.

Shellie Grantkelli peasley <santiamor2002@...> wrote:

Hi everyone me again,

Thanks for the info. I re-read my message and I made it sound as if Santis curve was back like it was before, not at all.... It is much much less then before we did the casting, he went from 50 degrees to 22 degrees and you can tell the difference with his back. This is the first time Santiago has been without anything during the day. Before casting we did the boston which he wore all day and all night, and then directly to the casting, thus this is the first time I have ever noticed him for long periods of time with his curve. I miss the casts and am ready NOW to get him into another one. The doctor said he doesn't usually cast in the hot summer months, but he wanted Santiago to get in them A.S.A.P. Once we start the casting in the winter months we won't have a problem with having to wait 3 months for the next one. I have a question, my doctor mentioned that he sat in on the first two extension rod surgerys (the type of rod that grows with

the spine) that they did in TX, I believe he mentioned at San childrens hospital. They were performed by a Dr. . He mentioned that this appears to be having a lot of success and that the two surgerys that they performed were a success. Does anyone know anything about this procedure? I am just curious, I didn't get all the info I wanted because Santi was screaming and we were in hurry to catch our plane. Any feedback on what this procedure holds for us with our little ones... thanks all,

Kelli and Santiago

Do you ?New and Improved - Send 10MB messages!

Do you ?New and Improved - 100MB free storage!

__________________________________________________

[Guest guest]

Hi Shellie,

Thank you very much for sharing that

medicine to us. It’s amazing that she gained a lot of weight with that

medicine. I am just wondering, whether you ever tried to stop using it for 2-3

days and see how her body react to it and is there any side effect from that

medicine that you can tell from your experience?

Darryl used to have a severe GI reflux,

vomited several times in a day and everyday. He had undergone 3 times of Nissen Fundoplication surgeries

with no luck. Everyday he is struggling with his vomiting and feeding problems.

We tried all kind of medicines and all kind of baby formulas in the US and we also ordered formulas from Europe (Netherland), but none worked. We had seen at least 6 GI

doctors and done countless GI test/x-rays with no luck. He had a long history

of GI/feeding problem since he was 2 months old. For almost a year, we have stopped

all of his medicines and tried to stay with all natural food but he hardly gained

any weight. So we are still trying to find out what works and what’s not

for his body.

Thank you for your support and pray. In

case if we missed it on Oct 19, could you please tell ‘Have a Very

Happy Birthday’ from Darryl.

We will let you know the results from Texas and Utah.

Thanks

Meg

Re:

Hi from Meg & Darryl

Meg,

It is so great to have you back. I have

been wondering how you and Daryll were. Thanks again for your visit to me

and Moriah while we were in Denver.

I'm so excited to hear about your evaluation with Texas.

They are wonderful people. We are still in contact with them about

Moriah. She's still in her halo -4 months now. Her curves were 120

scoli 120 kyphosis and now she is 66scoli and 75 kyphosis. We are hoping

it is enough of an improvement for Dr. to asess her again and consider

the Rib. We also found out she has hemivertebrae too.

I will be praying for you and Daryll on this

trip. It must be difficult going without your husband and expecting a new

little one. I'm glad you have a close friend to go with you and be of

help.

You will love Texas.

They are honest and will answer your questions. Let us know how it turns

out. Tell Daryll Moriah say hi.

Shellie and Moriah

Meg Wirantono

<mdco@...> wrote:

Hi everyone,

First of all I want to thank you for this

wonderful site, H. and all great parents here. Because of your valuable

information, we just received good

news from Texas, after waiting for several months, finally Darryl’s turn is

coming for the Titanium Rib Project’s evaluation by Dr. in San , TX. Yesterday, we got a

call from our insurance that Darryl’s evaluation has been approved and we

can go. Thanks God. We will be leaving Colorado on Sep 21 – 25. The actual evaluation dates are Sep 22, 23.

I am so excited as well as so nervous, I don’t know what will happen

there especially because my husband could not go with us and I am expecting our

second angel, I will be going with our friend so she can be with Darryl during

the test in the X-ray room.

I am doing my reading and preparing some

questions to ask at the meeting with doctors on the second day of evaluation.

In case if any of you have any suggestion or advice. I would appreciate that.

For new members, Darryl is 2.5 years old

with congenital scoliosis. He has hemivertebra at T12, butterfly at T8, fusion

on C4 & C5. his curve is around 55-58 degree, no change for the last 3

months. We are still doing ‘wait and see’, hopefully after come

back from TX , we will have the answer of what to do.

Thanks, Meg.

__________________________________________________

[Guest guest]

Meg,

We have tried a few times to wean Moriah off the medicine. She began to lose weight. We have decided not to make an issue of it now because she is not done with her surgeries. Once we do something with her back we will address the issue. She has great eating habits now, where she hadn't before. If she gets the Rib, I think we can try weaning after about 6 mos to a year, and wean very slowly.

As a baby she was also very gaggy. She had an NG tube for her first 6 months. I can remember even after the NG tube that we always kept towels close by, especially in the car. She just was always giving some back to us. We never knew what it was either. The most common theory was that the NG tube kept her esophogus open a little when it should have shut ( there's a flap type thing in there. I can't get too technical, don't know the terminology).

I hope all this helps. We will be praying Tues.

Shellie

Meg Wirantono <mdco@...> wrote:

Hi Shellie,

Thank you very much for sharing that medicine to us. It’s amazing that she gained a lot of weight with that medicine. I am just wondering, whether you ever tried to stop using it for 2-3 days and see how her body react to it and is there any side effect from that medicine that you can tell from your experience?

Darryl used to have a severe GI reflux, vomited several times in a day and everyday. He had undergone 3 times of Nissen Fundoplication surgeries with no luck. Everyday he is struggling with his vomiting and feeding problems. We tried all kind of medicines and all kind of baby formulas in the US and we also ordered formulas from Europe (Netherland), but none worked. We had seen at least 6 GI doctors and done countless GI test/x-rays with no luck. He had a long history of GI/feeding problem since he was 2 months old. For almost a year, we have stopped all of his medicines and tried to stay with all natural food but he hardly gained any weight. So we are still trying to find out what works and what’s not for his body.

Thank you for your support and pray. In case if we missed it on Oct 19, could you please tell ‘Have a Very Happy Birthday’ from Darryl.

We will let you know the results from Texas and Utah.

Thanks

Meg

-----Original Message-----From: Shellie Grant [mailto:shelliegrant@...] Sent: Saturday, October 09, 2004 11:02 PMinfantile scoliosis treatment Subject: RE: Hi Shellie &

everyone

Hi Meg,

Can you tell me more about his eating and GI problems? Does he have a diagnosis, or just a lack of appetite? Moriah had no appetite. She absolutely didn't care about food. We finally found a brilliant PICU intensivist at Wesley in Wichita, KS who suggested an appetite inhancer. It's called Megesterol, or Megace. You can call any pharmacy and get a facts sheet on it. We use Wal-Mart. Anyhow, Mo has been on this med since she was 5 and 1/2. She started at 27lbs. and is now 55lbs. Her most immediate weight gain was from 27lbs to 36lbs in her first halo. I don't know if it is the right thing for Daryl, but worth checking out if you are really having to fight him to eat. Oct 19th is 's birthday, so it will be easy to

remember to pray that day for you guys. Travel safely. I will be anxious to hear what both Texas and Utah have to say. Let me know if you have any more questions on the medicine.

ShellieMeg Wirantono <mdco@...> wrote:

Hi Shellie and everyone,

First of all, I am so sorry for being late in keeping you update with our trip to TX. Since we came back we have been very busy catching up with his missed appointments and therapies.

The evaluation went well, and we ended up spending 3 days for the whole evaluation/tests. The first day we spent the whole day from 8am to 4.30 pm for all kind of tests (9 x-rays, tomography,

catscan, blood test, EKG and Ultrasound). The second day we saw the Pulmonary doctors and he said he is happy with Darryl’s lung condition so far. About 3 pm we saw Dr. , he had some of Darryl’s X-rays but he said he was sorry he was not ready yet for any questions because he hasn’t received all of the test results and he wanted to discuss it first with his team. In that meeting he said briefly that he can think of 3 options of treatments for Darryl which are removing his hemis and connecting the normal bones together, or wearing growth rod, or titanium rib procedure but he cannot make a decision now which one is the best for

Darryl’s case until he meets with his team. So I just asked him to confirm things on his spine such as the location of his hemis, his fused bones on the lumbar part and also on the cervical part and if he could find anything else that I haven’t heard from any other doctors. For that reason then he ordered another CatScan for Darryl to create a 3D model which then we did it on the third day. So on the third day of evaluation we did another Catscan and also met with Dr. which we talked more about his GI and feeding problems. According to Dr. , Darryl needs to gain 2 more pounds of his current weight before he can have a surgery. 2Lbs sounds little but it’s very hard for us because he hasn’t gained weight for more than a year. We are still working on his feeding and diet problem. So…we are still waiting for the evaluation results, which they promised to get back to us around mid of Oct.

BTW, I asked Dr. if casting could be one of Darryl’s options but he doesn’t agree, even though he couldn’t give me a clear reason why.

When we got back home, a letter had been waiting for us from Shriners, Utah. Asked us to bring Darryl back for check up. Thanks God after a long conversation with Jo-Dr. D’Astous assistance and -Dr. Ogilvie assistance. Finally they let us bring Darryl to see D’Astous on October 19 at 9.45 am to discuss about casting and postpone our meeting with Dr. Ogilvie because the 3D model that they promise is not ready yet.

We’ve been wanting to see Dr D’Astous for so long, we really look forward to seeing him and hopefully he will still be honest to us, even though he might know that Dr. Ogilvie’s suggestion is to have a surgery.

Shellie,

We will be praying for you and MO too, hopefully Dr. could see her soon with the best solution. Please keep us update.

H.

I am so sorry to hear about grandma, please accept our condolences. She was a real hero that I can feel it through your works and dedications.

Thank you for everything you’ve done with this wonderful support group.

Keep in touch,

Meg

-----Original Message-----From: Shellie Grant [mailto:shelliegrant@...] Sent: Wednesday, October 06, 2004 7:50 AMinfantile scoliosis treatment Subject: RE: Hi

Shellie

Hi Meg,

Just checking on how the evaluation went. Are you waiting this week for an answer? I was told they are holding their meetings this week to discuss kids they've evaluated. Moriah is on the list to be discussed as well. Her stuff was sent to Texas and they received it Monday. Supposedly she was slotted for Tuesday or Thursday. I don't think we'll get a letter until probably the 18th or so. I was told they have a 3-6 month waiting list on surgery dates. Let us all know how it turns out. We'll be praying for you guys. Take care of yourself and the new little one. We'll be sure to visit next time we are in Denver. We have traction tubing to return once all this is figured out and Mo is taken care of.

:0)

ShellieMeg Wirantono <mdco@...> wrote:

Hi Shellie,

Thank you for your email. I’m glad to hear that Moriah’s scoliosis is a lot better now with the traction. You’ve been so patient and persistent in helping her. What a great Mom you are. We will pray that Moriah would be a good candidate too for Dr. ’s procedure after such a big improvement.

I will also let you know how the evaluation goes for Darryl. Say hi to Moriah from Darryl too. It was very nice meeting you in TCH-Denver at that time, we will never forget both of you. Any time you come to Denver for any reason please let us know. We love to see you again.

Meg.

-----Original Message-----From: Shellie Grant [mailto:shelliegrant@...] Sent: Friday, September 17, 2004 7:26 AMinfantile scoliosis treatment Subject: Re: Hi from Meg & Darryl

Meg,

It is so great to have you back. I have been wondering how you and Daryll were. Thanks again for your visit to me and Moriah while we were in Denver. I'm so excited to hear about your evaluation with Texas. They are wonderful people. We are still in contact with them about Moriah. She's still in her halo -4 months now. Her curves were 120 scoli 120 kyphosis and now she is 66scoli and 75 kyphosis. We are hoping it is enough of an improvement for Dr. to asess her again and consider the Rib. We also found out she has hemivertebrae too.

I will be praying for you and Daryll on this trip. It must be difficult going without your husband and expecting a new little one. I'm glad you have a close friend to go with you and be of help.

You will love Texas. They are honest and will answer your questions. Let us know how it turns out. Tell Daryll Moriah say hi.

Shellie and MoriahMeg Wirantono <mdco@...> wrote:

Hi everyone,

First of all I want to thank you for this wonderful site, H. and all great parents here. Because of your valuable information, we just received good news from Texas, after waiting for several months, finally Darryl’s turn is coming for the Titanium Rib Project’s evaluation by Dr. in San , TX. Yesterday, we got a call from our insurance that Darryl’s evaluation has been approved and we can go. Thanks God. We will be leaving Colorado on Sep 21 – 25. The actual evaluation dates are Sep 22, 23. I am so excited as well as so nervous, I don’t know what will happen there especially because my husband could not go with us and I am expecting our second angel, I will be going with our friend so she can be with Darryl during the test in the X-ray room.

I am doing my reading and preparing some questions to ask at the meeting with doctors on the second day of evaluation. In case if any of you have any suggestion or advice. I would appreciate that.

For new members, Darryl is 2.5 years old with congenital scoliosis. He has hemivertebra at T12, butterfly at T8, fusion on C4 & C5. his curve is around 55-58 degree, no change for the last 3 months. We are still doing ‘wait and see’, hopefully after come back from TX , we will have the answer of what to do.

Thanks, Meg.

__________________________________________________

[Guest guest]

Hi Shellie,

Thank you for your response. That’s

what I am thinking may be I have to use it just to increase his weight for surgery

if he really has to have a surgery any time soon. I will discuss it with his

feeding therapist and may be with his Pediatrician too. At least now, I know

from you that there is megace that we can use in case

if we need it. Thank you so much once again for sharing that information to us.

Keep in touch,

Meg

Re:

Hi from Meg & Darryl

Meg,

It is so great to have you back. I have

been wondering how you and Daryll were. Thanks again for your visit to me

and Moriah while we were in Denver.

I'm so excited to hear about your evaluation with Texas.

They are wonderful people. We are still in contact with them about

Moriah. She's still in her halo -4 months now. Her curves were 120

scoli 120 kyphosis and now she is 66scoli and 75 kyphosis. We are hoping

it is enough of an improvement for Dr. to asess her again and consider

the Rib. We also found out she has hemivertebrae too.

I will be praying for you and Daryll on this

trip. It must be difficult going without your husband and expecting a new

little one. I'm glad you have a close friend to go with you and be of

help.

You will love Texas.

They are honest and will answer your questions. Let us know how it turns

out. Tell Daryll Moriah say hi.

Shellie and Moriah

Meg Wirantono

<mdco@...> wrote:

Hi everyone,

First of all I want to thank you for this

wonderful site, H. and all great parents here. Because of your valuable

information, we just received good

news from Texas,

after waiting for several months, finally Darryl’s turn is coming for the

Titanium Rib Project’s evaluation by Dr. in San

, TX. Yesterday, we got a call from our

insurance that Darryl’s evaluation has been approved and we can go.

Thanks God. We will be leaving Colorado

on Sep 21 – 25. The actual evaluation dates are Sep 22, 23. I am so

excited as well as so nervous, I don’t know what will happen there

especially because my husband could not go with us and I am expecting our

second angel, I will be going with our friend so she can be with Darryl during

the test in the X-ray room.

I am doing my reading and preparing some

questions to ask at the meeting with doctors on the second day of evaluation.

In case if any of you have any suggestion or advice. I would appreciate that.

For new members, Darryl is 2.5 years old

with congenital scoliosis. He has hemivertebra at T12, butterfly at T8, fusion

on C4 & C5. his curve is around 55-58 degree, no change for the last 3

months. We are still doing ‘wait and see’, hopefully after come

back from TX , we will have the answer of what to do.

Thanks, Meg.

__________________________________________________