Hi, We are heading up to NIH on Sunday March 16 and will leave Wednesday morning the 19th if all plans stay the same! If anyone is going at that time please...
Researches conducted by The American Academy of Cosmetic Dentistry have found some interesting results. According to a study, vast majority of Americans...
Happy New year to all! We have not posted lately but have enjoyed reading all the news form others. Alice is doing well, except for today when she woke up...
Hello everyone, We have to go back in 3-4 months, due to Zach's ongoing concerns. As far as his avascular necrosis, it has remained localized in his right...
Mike and Kieran are getting to the NIH this coming Tuesday 1/22. ... concerns. As far as his avascular necrosis, it has remained localized in his right femur....
Zach, I am diggin the goatee!! ... concerns. As far as his avascular necrosis, it has remained localized in his right femur. He had a MRI on his left leg and...
Hello All!! I am Lee Parker's mom, Marie. I don't post onto the NOMID site typically but do read most of your posts. Lee and I will be going to NIH next week...
Dear Marie Tilly is still here at the Inn and we hope, pending extension of stay this week, to still be here so hopefully we can meet. Where are you from? How...
We live in Bakersville, North Carolina and should be checking into the Children's Inn Sunday evening. Lee is 16. This visit will be his 4th year. He was...
Hi Marie, Zach and I met you at the very beginning and we shared a room at the hospital. I remember how quickly Lee's rash returned being off the Anakinra....
Hi there everyone. I hope you are all doing well. For Mr. Parker, I don't know of anyone who will be at the NIH that time you are there. Kayla, Carlos and I...
Lee is doing very well. He has an occasional problem with migraines but overall he is doing great. His growth has been extraordinary. He has almost caught up...
Hello to everyone, I enjoyed seeing the pictures of your recent trips to the NIH, and the post from Lee's Mom. It is so hard for me to immagine Michael all ...
Hi I just read Dorelia's post. Joseph and I will be arriving on Sunday the 16th of March and will be there until at least the 19th. Fran Fran Bulone RN Mom to...
Hello to all When my daughter and I are going back to tyhe nih on Feb.18-23. I will be an inpacent and tiffanie and her dad will be staying at the chinldens...
Hi Becky, Alice will be an out patient but she has a room on the 5th floor during the day since she is over 21....so we will be there too. We will be sure to...
hello. is alice giong to have and spinal tap done .I thank that why i have to stay in the hospital .I have to have one done .I don't do very well with them...
Hi Becky,We are leaving for the NIH this sunday. We are scheduled Feb. 3, for the week. I don't think we see each other, unless you come sooner than...
Hi Becky, Yes, Alice is having a lumbar puncture on Wednesday (Feb 20) at 12:45. When is yours? She has not had any horrible problems in the past. I hope...
Hi Sherri, We have not met yet, but Isaac and I will be there the 6th - 9th.? It would be great to meet you and Miranda.? I always read the posts and know you...
Camille,Mine is on Tuesday at 2 o'clock and my daughters is on wedsday at 11 o'clock.I hope it goes good for alice too.becky Terry & Camille Lieffers...
Kathe,Thanks so much.ihope one of these times we can meet i have meet alot of nomid kids .I hope every thing goes good for Isaac to.becky kathebarch@......
Hello everyone. I hope all are well. Look likes I'll be attending the FMF Conference in Rome, Italy in April! If anyone has ideas of lower cost, safe places...
Doralia and Kayla Joseph and I will be at the Inn on the 16th of March. We will be there until Wed. Feel free to look us up. Fran Fran A Bulone RN Nurse...
Dear Dorelia, That is exciting, what a great experience! It is nice to know someone will be there from the NOMID community. Sorry, I don't know to much about...
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