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New to this site- Nicholas 2 years old
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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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Posts: 195
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Location: Wyoming
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 smamom2three@yahoo.com
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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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Posts: 1079
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Location: Brookfield, CT
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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