Welcome Vira to the group , Usually with TTD the hair is one of the main features of the illness , and whenever exposed to light it will break off weaken and...
Hello all: Well Megan is finally out of the hospital, what a long two weeks. It seemed like such a simple procedure NOT... Megan didn't do well at all she was...
Hello Vira: My name is Katie and my daughter Megan is 7yrs old. Like your daughter Megan had dry, course hair and very dry scalp. She had fever induced hair...
Hi Vira, My name is Jerry Lopez and very surprised to see another Lopez in the group. My wife Bonnie and I have two children with TTD, Jerry Jr., 11, and a...
Glad to hear things are getting better. You should check on the type of pump that you get for the feeding. Sydney has a portable pump that is very small and...
Hi and welcome to the group! I’m Kasie Appel and my husband and I have 2 daughters, both with TTD. Both have the hair and skin issues associated with the...
hello everyone, we had tyler in for a pre-op physical on tuesday and he has finally hit 40lbs. it has been a long road to get there but he has done it!!! we...
Hello everyone It has been awhile, but I have finally found some time to sit at my computer uninterrupted. Things at home are quite well. The newest addition...
Kelly MacLeod
kmacleod@...
Sep 8, 2006 11:20 am
1495
Hi Kasie Good to hear from you , the doctors I have taken Sammy-Joe to are the doctors at the National Institute of Health in Mary Land Bethesda and then I...
Hello Jerry, Thank you for responding. Yes I do believe that my Lauren does resemble your Briana. I viewed a picture of your family on the site. I have a some...
Hello everyone: I just wanted to let everyone know that Megan is back in the hospital. We were hoping that this feeding tube would give us some relief but it ...
Vira, Thanks for writing back. I can't believe we found someone so close to us with the same problems we have. We live in Laredo. Where abouts in the valley do...
I am so sorry to hear that Megan is back in hospital , have they tried giving her some antibiotics because she may have an internal infection from the...
I am sorry to hear that you are having problems. Sydney had a G-tube until about a year ago and they changed it to a G/J tube. Basically it is an easy thing...
Hi Jodi and Russ: They are not sure what Megans biggest problem is, I don't think it is actually the tube itself for some reason her stomach just isn't able to...
Hello, I hope you don't mind me posting this here? Please vote for POST PALS and help brighten the lives of seriously ill children. We (www.postpals.co.uk) are...
Hi Katie, Thank you for sharing with me. I think your description is a lot better than mine. Lauren's hair usually breaks off and resembles a buzz cut also....
Hello Everyone , Just wondering how everyone is doing ? Sammy-Joe has been a little better the last few days , I have had the flu for ages , so I have only...
Hello, We are all doing great here in sunny Brisbane. School holidays are almost over. We were very lucky that Kim and Melinda were able to have a couple of ...
Hello Everyone just wanted to let you all know I spoke to Sharon Last night , she also sent me some photos of James and I got to speak to James on the phone ,...
Hello everyone , Hope you are all well ? I would love to hear from you all soon . I have been busy lately with trying to get the Brochure prepared for the...
Hi everyone its been a long time. For those I don't know our son James has TTD. He was diagnosed at 20 months and it was a rollercoaster ride for a few years...
Hi to all, I haven't posted in quite some time - life has been crazy...as it is for all of us! We'll be leaving a week from today to visit the NIH with Sean....
Merry Christmas everyone , I hope this email finds you all well , I am so sorry I havent written in a while , I have been pretty busy with Sammy-Joe . I hope...
hi everyone i hope everything is going well with everyone. the stress of everythink in the house has got to me and my husbund so we are now separted. the girls...
Hello Irene I am so sorry to hear that you and your hubby have decided to seperate , the pressures of having a child with an illness is enormous , if you need...
Hello Everyone: I hope that this letter finds everyone in good spirits after the holidays. Irene I am so sorry to hear about your seperation. I know that at ...
Dear Friends We Wish You and Your Family a Very Happy, Prosperous and Healthy NewYear. May all your wishes come true by the grace of god. Prayers and good...
Dear Friends We wish you and Your Family a very happy, prosperous and healthy new year. May all you wishes come true with the grace of god with bright and ...
Katie, That is such WONDERFUL news! Good for Megan (and you)! Hope your NIH trip goes well. We went in November, and I've been meaning to let the group know...
