Hi everyone I have posted new photos in Sammy-Joe s webpage please go and have a look http://www.caringbridge.org/ok/sammyjoe and please also read journal...
Hi everyone~ I feel so bad because I do not communicate with the group as often as I should. Collin has not been doing great. He ended up in the hospital over...
Hello everyone: It was nice hearing from everyone, I'm sorry to hear that Sammy and Collin are under the weather and I hope that they are feeling better really...
Katie~ The playground is wonderful. I feel the same as you. I don't want to ask for a trip becuase I just don't think Collin would be up for it or enjoy it....
Julie Hi, thanks for your reply, Megan has non-photosensitive TTD, she has a lot of different effects from the TTD, because hers is complicated by her...
Hello Katie Usually children with TTD are very small for there age and I agree with you that 19lbs is small for a six year old , please wish her a Happy...
Hello Everyone, I just wanted to check in with you all and let you all know that I love hearing your stories and hearing about how all the childern are...
Hi all! We took Sydney to the NIH in July. It was a very busy week. We did not learn a lot of new information, but it was very good to know that we have been...
Melissa and family, I have been thinking of you and remembering all of the "first" that come the year after a child's death. They all are difficult, but the...
Thank you for your email , The NIH team are wonderful and I believe that they are doing a great job , they are so good to me whenever I write to them they will...
Jodi, I'm still working on getting all Sean's medical files in order and sent to the NIH so that Sean can also visit - hopefully sometime later this year. You...
Hi my daughter Katie has a lot of hair as well but it does fall out alot and breaks off so never really grows past shoulder length her last examination done in...
Irene~ I am sorry that I can not help you with the "girl problems" since Collin is a boy. Collin does not have the problem with the teeth. At this point he...
Sammy-Joe had overcrowding also in his mouth and so teeth were removed and braces were put in for about a year , he did really well with them and he now has...
I just wanted to let everyone know that Sydney is in the hospital. Last Wednesday she came down with a bad cold and it has really hit her hard and fast. She...
hi everyone this part is an answer to julies question katie is not photosensitive but does dress up like it is cold in hot weather and dress down in cold...
Sammy-Joe was a very slow developer with Speech and he did not speak until he was 8 years old , he is still improving everyday with his speech and tries very...
Dear Jodi , I am so sorry to hear that your beautiful girl is in Hospital , I will be praying hard for her and please let me know how she is fairing . It makes...
Jodi, Oh my how familiar that sounds to us. That was Makenna's whole story. She was always catching a cold and then it turning into pneumonia. She was on the...
Dear Jodi~ I am so sorry to hear about Sidney. It is so heart breaking when they have to go through so much . I want you to know that we are storming Heaven...
Dear Jodi and family Please know that we are praying for Sydney to go home soon and storming heaven with prayers for our sweet Sydney , please let me know how...
Dear Jodi I am so sorry to hear that Sidney is sick. Watching a child being sick is the most helpless feeling in the world for a parent, as we all know from...
Maria - I found this email in my Inbox and realized that I had not repsonded to it. So sorry for the delay. Regarding eating and stomach issues, Sean has no ...
Maria, I know you sent this awhile back, but I just got the chance to read it, and I found it very interesting. Before being diagnosed with TTD, Sean had been ...
Thanks for all of your support. I have great news to report to the group today - Sydney was taken off the vent at 1 pm and is doing well so far. She is still...
Hi Tammy Thank you for your email , I agree with you there are probably so many children out there going undiagnosed , I was hoping by posting the webpages...
Hi Jodi Great to hear that beautiful Sydney is improving I will keep storming heaven with prayers , please keep us intouch . I was wondering if you could let...
Jodi~ That is wonderful news!!! Wow, what a stron little girl Sydney is!! We will continue to pray for Sydney and for you family. I know how hard it is to have...
Sydney had low levels in 2 of the 4 IgG subclasses and is very low (almost undetectable) in IgA. When they looked at the total IgG it was near normal, they...
Just wanted to let all of you know that she came home today about 9 am. We are all happy to be home and she is getting back to her old self. Jodi ... From:...
