Travis' Surgery went great and we are finally at home! He was in the PICU for 2 days. Just to keep a close eye on him. We couldn't stay the night with him so...
Hello, Eric cried like that for four years. He was totally inconsolable. I believe his pain was due to his delicate little digestive system. He would cry to...
Just wanted to say that Charlie had the gastro and nissen fundop last thursday and is doing great, he only spent 1 night in phdu, and we were allowed home...
Hi its Nichole Kalebs mom. Kaleb has had a rough year this year. He has started having having issues with constipation and impactions. He has also gotten MRSA...
Quick question, how many of you have other children with atrx. Did you get tested for carrier?If so, anyone test negative and still have a child with the...
Hi Suzett, We have one other child, a girl, now 5. She was born before Dr. Gibbon's team had located Jasper's atr-x mutation so we did not yet know if I was a...
Suzett, Our son Ben was our first born and we had always wanted more than one child when we were married. But when Ben was born and had so many needs it...
My son Nathaniel is 5. He has alpha thalassemia due to a deletion on his 16th chromosome. The deletion is de-novo meaning neither I nor his father carried...
Hi Suzett! Were Heath & Kat, Emma's parents.Emma is 13 mos. Genetically she's a male, but physically she has female genetalia. Since she looks completely...
I want to thank everyone for your help. I think we've made a decision of in vetro and PGD. Were going to do it the "old fashioned way", and hope for the best,...
I don't have a child, myself, with ATR-X, but my brother has it. He'll be 18 this year, and is the youngest. My younger sister is 20 and carries the gene,...
jasmine jones
iliketoscoot@...
May 8, 2008 1:24 am
1242
As I mentioned before, we're considering the PGD as well. We have a consult on June 2nd. It's comforting to know that we're not alone and that we have this...
Just wanted to update you all on Travis. He is doing well since his nissen and g-tube placement. But is having a lot of issues with gagging and retching. I'm...
Hi Ruth, Please be assured that this happened to Eric also for the first few months. He would gag if we even brought food near him. Is he on a continuous...
Hello Everyone... Heath and I are getting frustrated with Emma's physical progress. We are well aware that the syndrome ranges and that each child is different...
Hello, just hang in there you're doing great. If you keep up with the PT she will get there. One thing you may want to invest in is a special seat like a...
Hi, Jasper, now 8, was also very floppy and slow to get his head control. I can't give you an exact age when he finally "got it" because it was coming and...
hi Thomas is 3 and 1/2 and has just started sitting, a little wobbly and still falls over so lots of padding needed to stop little knocks. it too almost 2...
Hi Ruth, Pleased to hear that Travis is doing well following his g-tube. Aaron had his gastrostomy at the end of November and we had times where he gagged and...
NOEL STUBBS
noel@...
May 11, 2008 7:18 pm
1250
Hi everyone, Hope all is well your way. Bill and I just found out we are having another baby. We are the parents of Miles who is now 17 mths and is doing well....
How exciting. what wonderful, wonderful news :) I hope and pay that you will have a healthy, enjoyable pregnancy and that baby will be healthy and happy. God...
Congratulations!!! We're so happy for you! We will definitely keep you in our prayers and wish you guys all the best!!! xoxoxoxo The Nelsons (heath, kat & emma...
Hello again everyone!! Bill and I just got back from our genetics appointment and found out where Miles has his mutation. It is on the 34th exon and is labeled...
We will pray for healthy mommy and baby Sent from my BlackBerry® wireless device ... From: ann allen <annallen7@...> Date: Mon, 12 May 2008 17:08:11...
Yes, Jasper does this sometimes, but it's not related to choking. Occasionally he will get one bright red/purply red cheek. Or one or both ears will turn a...
I am SO excited for you. Congratulations. I'm so glad that you have the strength and faith to have another child regardless if it has ATR- X. All of my doctors...
We use miralax for Kaleb. He has had a fundo and has a g-tube in place. Latley our biggest problem has been him pinching. Do you have this problem with Jasper?...
