New to this site- Nicholas 2 years old
cristab1
Posted 2005-05-24 12:26 PM (#10581)
Subject: New to this site- Nicholas 2 years old



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Hi Everyone,
My name is Crista and my son Nicholas (2 next month)has Idiopathis Infantile Scoliosis. We live in California but have been traveling to Utah for the last 1 1/2 years for serial casting. Unfortunately...Nicholas curve goes right back into the high 50's within 1 day after his cast removal. He also has severe rotation and wedging. Dr. D'Astous has also told me his spine is rigid. Does anyone here have a child that has has the TRP that has idiopathic? I must admit that I am pretty uneducated about this procedure but am scared to death to have growth rods and fusion surgery. My son is also starting to develope Kyphosis, early stages though. If someone could fill me in I would be very grateful. Thanks everyone.

Crista (Mom to Nicholas)
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Carmell
Posted 2005-05-24 1:50 PM (#10582 - in reply to #10581)
Subject: RE: New to this site- Nicholas 2 years old



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Crista!  Nice to see you here.  I'm sure someone will be able to give you information you are looking for.  I know that Cindy's Ian has a hybrid only device.  Not sure if he has congenital or idiopathic scoliosis tho.  Also, Cathy from Canada has a son Nicky with a hybrid only device.  I believe his is idiopathic.  They (and others) can give you insight on their experiences.

The kyphosis (like we mentioned before) is probably more important to keep an eye on than the scoliosis.  Hopefully it won't get too far out of control before they figure out how to help him.

One of the good things about the VEPTR devices is that they are not fused into place.  That means of you do try it, and it doesn't work the way they planned, UNDOING it has less of an impact on the patient.  Does that make sense?  I hope so.

Good luck with everything!  Talk to you soon.

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Guest
Posted 2005-05-24 2:54 PM (#10587 - in reply to #10582)
Subject: RE: New to this site- Nicholas 2 years old




Thanks alot Carmell! You are always a wealth of info! What is a hybrid only device?
Cathy and Cindy I would love to hear from you both. Thanks everyone.

Crista
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Connie, Billy's mom
Posted 2005-05-24 7:01 PM (#10597 - in reply to #10581)
Subject: Re: New to this site- Nicholas 2 years old



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Welcome Crista. My son Billy is getting scheduled for the hybrid devices (his will go from the ribs to the pelvis on either side of his spine) to help straighten his back prior to a lumbosacral fusion surgery. He has scoliosis and rotation also, although his is from congenital birth defects in his sacrum and lumbar spine.
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Crista
Posted 2005-05-24 9:27 PM (#10601 - in reply to #10581)
Subject: RE: New to this site- Nicholas 2 years old





Thanks for the reply Connie. I think we spoke on the casting group before. Was that you? Good luck with your sweet boy!!
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josiejean
Posted 2005-05-24 10:31 PM (#10602 - in reply to #10581)
Subject: Re: New to this site- Nicholas 2 years old



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"hybrid only" is just to say that the child only has one titanium rib and it's a "hybrid" rib which means at the top of the t-rib it connects to the natural rib of the patient and the bottom of the t-rip attaches to the patient's spine or pelvis.

shawn
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Hannah's Mom
Posted 2005-05-25 12:17 AM (#10610 - in reply to #10581)
Subject: Re: New to this site- Nicholas 2 years old



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Crista,
Welcome to the board.
Tammy
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Eileen
Posted 2005-05-25 6:36 AM (#10611 - in reply to #10581)
Subject: Re: New to this site- Nicholas 2 years old


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Crista,

Welcome to the board.

Eileen
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Zoes Nana
Posted 2005-05-25 7:29 AM (#10614 - in reply to #10611)
Subject: Re: New to this site- Nicholas 2 years old



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DEAR CHRISTA,

WELCOME TO THE VEPTR BOARD...

THE LAMBERTS
PLYMOUTH, PA.
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cristab1
Posted 2005-05-25 10:35 AM (#10616 - in reply to #10581)
Subject: Re: New to this site- Nicholas 2 years old



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Wow,
This is really a great place for support. All the welcomes I got this AM really made my day. Thanks everyone.
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Connie, Billy's mom
Posted 2005-05-25 12:30 PM (#10617 - in reply to #10581)
Subject: Re: New to this site- Nicholas 2 years old



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Hi Crista... Yes, I belong to the scolichild and infantscoliosis groups (the casting group is one of those, but cannot remember which, LOL), and I occasionally post on there to people with similar issues... My understanding of the "hybrid" is that is what the titanium rods (either spine to rib, or rib to pelvis) are unofficially called vs. the regular "titanium rib" which goes from one rib to another to separate fused ribs, or create space where ribs are missing? Any thoughts from the experts? Billy has no thoracic anomalies, so he won't need that kind of a device implanted.

Glad to "see" you here, I'm sure you'll get lots of info from these great people!
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Carmell
Posted 2005-05-25 2:09 PM (#10622 - in reply to #10587)
Subject: RE: New to this site- Nicholas 2 years old



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Hi Crista,

Like Shawn and Connie said, the "hybrid" device is typically the spine support rod. The rod that supports the scoliotic or kyphotic curve of the spine. They hybrid rod was designed to help support the spine, as a support to the chestwall device for kids who had chestwall deformities or fused ribs or whatever. Braydon has both a chestwall rod and a hybrid rod. There are several different ways to use the hybrid device - generally a rib-to-spine attachment or a rib-to-pelvis attachment, just like the others said. The design of the device is unique - unlike any other spine implant. Hopefully as you hear from other families, it will make a bit more sense about how these devices work. In the "Albums" section, there are several photos of xrays of the devices, if you are interested in seeing what they look like. Braydon's album section has one, I know. Several have them.

Take care and I hope you are doing well!

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Emily's Mom
Posted 2005-05-25 2:33 PM (#10624 - in reply to #10581)
Subject: Re: New to this site- Nicholas 2 years old


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Hi Christa ~
Welcome from us also! There is a ton of information and support that can be accessed here - glad to have you aboard!
Janita
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Crista
Posted 2005-05-25 5:55 PM (#10627 - in reply to #10581)
Subject: RE: New to this site- Nicholas 2 years old



Carmell,
I just looked at Braydons photos. I cannot believe the before and after!! What a change. WOW, I am speechless.
I left a message for Dr. D'Astous to discuss this procedure, we have talked about it before. Looking at all of these other kids I don't know if Nicholas could qualify with a 60 degree curve. I guess I could take his cast off and let his back get worse and that would take no time at all. I know we would be 100 + degrees by now had I not stabalized him with the casts. Thanks again everyone, this is the nicest board I have been on so far! I will let you all know as soon as he calls me back.

Crista
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Emily's Mom
Posted 2005-05-25 10:26 PM (#10631 - in reply to #10581)
Subject: Re: New to this site- Nicholas 2 years old


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Crista ~
Just wanted to let you know that Emily had a 60 degree curve before surgery and 20 degree after she came out of the surgery. Pretty amazing! We used a Milwaukee brace for the scoliosis for 2 years prior to the evaluation for the titanium rib. Her curve kept getting a little worse every time we had x-rays. When we found out last July that she had been accepted for the surgery, they said that she could stop wearing her brace and I know that the curve did progress a little more without it on. They mentioned the casting at one point to us but thankfully this other option was presented to us and has made a huge difference for Emily!
Janita
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cristab1
Posted 2005-05-26 10:13 AM (#10638 - in reply to #10581)
Subject: Re: New to this site- Nicholas 2 years old



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That is really amazing Janita. 60 to 20 degrees.
I just spoke with Dr. D'Astous Cooridinater and she said he said Nicholas is too little for the surgery. Is 2 years old too little? Janita, I read that Emily was a preemie, so is she considered idiopathic or congenital? I have been emailing Lori in Texas and told her Nicholas was 2 and she told me to send all his info. hmmm..What do you guys think???? I was starting to finally feel peaceful about a surgical option and Dr. D'Astous threw a little wrench in it this AM.
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Emily's Mom
Posted 2005-05-26 10:33 AM (#10639 - in reply to #10581)
Subject: Re: New to this site- Nicholas 2 years old


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I'm pretty sure that there have been kids under 2 that have had the surgery but the 'veterans' are going to help with that question. You know, I can't remember about the idiopathic or congential ~ I'm going to have to check on that. I still get the two confused. Lori has been good to work with through email, etc. Although, they are very busy down there! We just found out yesterday that Emily may not have her expansion now until the beginning of August due to scheduling conflicts. I hope they will be able to give you some information for Nicholas!
Take care!
Janita
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Carmell
Posted 2005-05-26 1:30 PM (#10641 - in reply to #10638)
Subject: Re: New to this site- Nicholas 2 years old



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Hi Crista,

There have been infants who have had the VEPTR surgery.  The prefer the child to be close to 12 months, or even older, but yes, it is possible to have surgery at age 2.  The youngest was 6 months, I believe.  Please remember that EVERY CHILD IS UNIQUE.  Obviously we wouldn't be sending our infants for surgery if they didn't need it.  But, like you already know, Nicholas's spine will continue to get worse if you don't do something about it.  Dr. D'Astous is aware of the VEPTR surgery, but I'm sure his coordinator(s) does/do not understand the full qualification process or who would be a likely candidate, etc.  I'm glad you've emailed Lori.  I think it's a great idea to send Nicholas's file to her.  I think you should also send a copy to Primary Children's (Dr. Smith, Melissa is the coordinator here).  That way you will get two opinions on how to best help Nicholas (two besides Dr. D'Astous).

Good luck and I hope you find that peace of mind thing again, very soon!  Take care.

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cristab1
Posted 2005-05-26 1:42 PM (#10642 - in reply to #10641)
Subject: Re: New to this site- Nicholas 2 years old



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Hi Carmell,
Okay, I have pretty good news (I think). I just spoke with Dr. D'Astous and he setting up an appt for us to see Dr. Smith for an eval. when we are in SLC in August for our next cast change. Dr. D'Astous said he didn't know if Nicholas's curve was severe enough YET. That made me really sad to think I willl have to keep my baby out of a cast until he can't breathe to be able to qualify. My husband and I don't mind the cast, you can't even notice it under clothes, it is just quality of life I am getting concerned about. He can't wear casts until he is 18, he could, but he won't. I just want him to be able to do normal kid things. We live in So. Cal and it is hot here and all of the schools seem to have sand, which is a big NO NO for a cast kid.
I don't know, sorry to be rambling, this site is very humbling to me and I really appreciate everyone who has responded to me.

Crista
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Emily's Mom
Posted 2005-05-26 2:49 PM (#10643 - in reply to #10581)
Subject: Re: New to this site- Nicholas 2 years old


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Great news about getting an appt. with Dr. Smith!
Janita
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Carmell
Posted 2005-05-26 4:22 PM (#10646 - in reply to #10642)
Subject: Re: New to this site- Nicholas 2 years old



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Crista - I know Dr. D always wants what's best for the kids.  I think he's being overly cautious about giving you his opinion about whether he thinks Nicholas would qualify for a VEPTR placement.  I know several kids who have had this surgery who have seemingly less severity in their spine issues (maybe more chest involvement - I don't know).  What it boils down to is whether his quality of life is affected - just like you said.  After Braydon had his VEPTR surgery (at age 6yrs old) only then did we realize how severely impacted his lung function was.  You don't want to get to the point where the lack of lung function is visibly obvious.  Dr. Smith has been Braydon's ortho from day one - literally (okay, well, we saw him when Braydon was 5 days old, not one day old, but still a newborn! LOL).  Dr. Smith is much like Dr. D in his love and concern for these kids.  He will be able to give you another perspective on Nicholas's specific situation.  All the parents here can share their stories and experiences, but only a trained professional can give you details that you need to make the right choice for Nicholas (I'm not telling you anything you don't already know).  I think Dr. Smith will be able to help you.  Let me know what date you are coming to SLC again.  I'd love to meet you and Nicholas!  (I missed out last week at Shriners - didn't want to give the kids Braydon's cold/virus).

Take care!!!

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ChasesDad
Posted 2005-05-27 8:28 AM (#10668 - in reply to #10638)
Subject: Re: New to this site- Nicholas 2 years old


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Crista,

My son Chase had the VEPTR at 14 months old, so 2 should (depending on other problems) be do-able. Because of the smaller lungs, he was on the ventilator for 10 days afterwards, but otherwise all went well. Chase was also pretty severe, went from about 100deg to something like 40 with the first operation (not sure exactly, I'm certain my wife knows). Chase however has Jarcot-Levin (fused ribs and scoliosis) so not exactly the same situation.
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mtnmom
Posted 2005-05-30 2:13 AM (#10729 - in reply to #10581)
Subject: Re: New to this site- Nicholas 2 years old


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Hi Christa, welcome (albeit late ) to the board!

My daughter Nikki has idiopathic infantile scoliosis. She received her VEPTR in Utah in Fall 2004. We really like Dr. Smith, he's very through, confident, and concerned for the kids. I know you'll be in good hands for Nicholas' evaluation. We'll be thinking of you and hoping it all goes well.

Don't quote me on this, but I think that once the curvature gets around 50 deg. they start seriously considering surgery, at least that's what we ran into when Nikki's curve got that high. By the time she had her surgery it was 72 degrees, but they started talking surgery once she got over 50.

Take care,

Brenna
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Aschdons mom
Posted 2005-06-02 2:41 PM (#10905 - in reply to #10581)
Subject: Re: New to this site- Nicholas 2 years old



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welcome! I too am a bit late on the welcome but cant help it, I have been gone,
We just had an appointment with Dr Smith last month and he is very kind. I throughly enjoyed talking with him. What is making him go ahead with the surgery is because hte kyphosis part of his curve. His scoliosis is at 50 degrees and his kyphosis is at 76 degrees. The soonest he was able to get us in for surgery is Aug 22. Now Aschdon does not have the fused ribs like alot of the kids here to. I think his would be considered idopathic (um spelling?) meaning it is caused by unknown reasons basically. He will be having the rods that go from his ribs to his pelvis on both sides. Dr Smith is also doing it a new way. He says he has done this surgery on 51 kids and 10 of them he has done this new procedure on. Instead of making a huge incision he will make a total of 4 for Aschdon (two on top, two on bottom) and then incirt the rods that way. He says it cuts down on the ICU time, and the healing time it seems. Aschdon will also be the first Spinal Muscualr Atrophy kid to have this done in Salt Lake.
Ok so I got winded! welocme and look forward to hearing more about ya!
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jennn53
Posted 2005-06-03 11:36 AM (#10964 - in reply to #10581)
Subject: Re: New to this site- Nicholas 2 years old


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Location: Torrance, California
Hi Christa,
I am also new to this site...so WELCOME.
My son, Ethan is 2 1/2 years old and has many surgeries unrelated to his spine. He was also diagnosed with scolosis and kyphosis. They had fused a part of the kyphosis with bone graphs...but unfortunetly that didn't work. Initially they wanted to go in and put metal stuff in him...but he was and still is too skinny. So this next time (sometime this month or in the next few months) he will be having to do both the growing rods as well as the fusion with the metal stuff.
We live in Torrance, Ca and he is currently going to Children's Hospital in LA. Dr. Skaggs is his doctor.
I'm also terrified to death about my son's future surgeries....But from what I hear the intial surgery is the worst....then usually the rest of them are outpatient type surgeries......but that may differ depending on the hospital and doctor.
Hope this helps!

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Crista
Posted 2005-06-20 10:10 AM (#11295 - in reply to #10905)
Subject: Re: New to this site- Nicholas 2 years old


Thank you for the message regarding your precious little Ashdon! What a cutie. When I read your story I could really feel for you because Nicholas was diagnosed with SMA type 1 at about 2 months old. After seeing 3 neurologists and a battery of tests including the genetic test it was determined that we were given a misdiagnosis. What a hard time we went through, you must have amazing strength. Give your little guy a hug from us. We are seeing Dr. Smith on August 9th. I am nervous about the appt. but whatever is meant to be will happen for Nicholas. Thanks again for your reply to me.

Crista
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cristab
Posted 2005-06-20 10:18 AM (#11296 - in reply to #10581)
Subject: RE: New to this site- Nicholas 2 years old


I did contact Dr. Skagg's in LA since we live in orange county I thought it might be more convienent instead of flying back and fourth to Utah like we have been for almost 2 years. I spoke to our Dr. at Shriners and he thought it would be best for Dr. Smith to do the surgery if Nicholas is a candidate. The reason being is Dr. D'Astous assists him with these surgeries and knows so much about Nicholas and his medical history. I think it might help us also if Dr. D'Astous discussed Nicholas's case with Dr. Smith. Dr. D'Astous felt Nicholas might be too skinny too that was his one concern. He is very tall but weighs about 26 lbs and will be 2 on Sat. I definately would consider doing the extension surgeries in LA if we were to be accepted. Thanks for you story on your little Ethan. He sounds like a real trooper!

Crista
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Aschdons mom
Posted 2005-07-20 6:39 PM (#12120 - in reply to #10581)
Subject: reply to crista



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wow sorry it took me so long to get back to you. My life kinda went to H-E-L-L in a hand bag and well I got so sick it was about to kill me. Anyways, it was a miss dx of SMA? So what does your little one have then? Are you still planning on going to Utah? I am getting nervous as there is only one month now and Aschdon will be having his surgery. I would love to talk more with you!! you can email me too at [email protected]
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Jubi2U
Posted 2005-07-23 4:49 AM (#12155 - in reply to #10581)
Subject: RE: New to this site- Nicholas 2 years old


Hi Crista, I'm Julie (one of Elizabeth's moms) LIzzy was 2 when she had her first implants (she has 4, 2 on each side). Dr. Campbell believed that doing her young and healthy is better than waiting till she was older and not doing as well. He conveyed to us that he liked to have them in as good as shape as possible as to increase the chances of a better outcome. Elizabeth has Jarcho-levin and let's face it, she wasn't going to magically improve, she was going to get worse. SO we decided to go ahead and do it sooner than later and I'm glad we did. They need as much strength as they can muster to get through a surgery like this. It is a big surgery. As for the weight, I worked like a dog to get those pounds on. I even had a nutritionist coming to the house twice a week. To no avail, she just burned them up doing stuff like BREATHING So I (much to my partners dismay and she is a doc) put her on O2 and magically she gained the weight she needed. Now she is 4 and has really only gained a couple of pounds. She is a whooping 27 pounds! These kids should have their own growth chart. They can still be little and healthy. Lizzy is also from Guatemala, so we have to remind them that she will always be on the small side. I hope that you get what you need for your son, and as everyone will tell you here...listen to your instincts as a parent, because sometimes listening to doctors can be a little maddening. Good luck to you and your family on this journey and welcome to the board
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Eileen
Posted 2005-07-25 6:25 PM (#12220 - in reply to #10581)
Subject: Re: New to this site- Nicholas 2 years old


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Hi Julie,

After reading your post a light bulb went off inside my head. I think I am going to ask Andrew's doctor if I can do the oxygen at night. It seems so smart! Andrew is using up all of his energy as well. He had not been able to put the 22 lbs he lost after surgery in April back on. He eats, but gains nothing. I know it sounds like a lot of weight when you compare the small children's weight to his, but he is 5"11 and 115 lbs. He is stick thin! After the pneumonia 3 weeks ago, he seems to have lost most of the energy he did have. At this point I am willing to try anything. As long as it is safe!

You said that your partner is a doctor, what specialty? Just interested....

Thanks for the advice.
Eileen
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Jubi2U
Posted 2005-07-25 9:53 PM (#12222 - in reply to #10581)
Subject: RE: New to this site- Nicholas 2 years old


I hope the O2 helps Paula is a Pathologist...I call her the Deadman's Doctor (OK not so funny ) She doesn't do too many autopsies anymore, but diagnosis' all kinds of stuff and as the kids will tell you "Mama's going cut up the people parts" No wonder the other pre-school parent's don't talk to us I'm going to try to read your e-mail, but Paula made us switch servers and I am still trying to figure out where my MAIL IS! Hope Andrew is feeling better soon. It's going to take time
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