Journals
- By BKuz · Posted November 25, 2008
- 0 replies
- I hope you can join us today, Weds Nov. 26, up in the Bistro area at 7pm as we come together to try writing new types of poems about the things we are most thankful for. There will also be fun thanksgiving ...
- By Jordensmom · Posted November 24, 2008
- 0 replies
- Wow, the last few months have been so unbeleivable. In June Doctor Goldbach-Mansky increased Jordens dose of colchicine by .3 mg/day, and the difference is incredible. Jordens last HIGH fever was at the ...
- By bonn250 · Posted November 22, 2008
- 4 replies
- my 7 year old daughter has had fevers every4-6 weeks since she was 4.5 years old she also has swollen lymph nodes,mouth ulcers,rashes,& joint pain. This last 7-10 days. The Drs. think it might be hibernian ...
- By CanadaNuse · Posted November 17, 2008
- 0 replies
- A lot has been happening on the home front. Ash's medical team including mental health are changing her dosage of medications, times given etc. In hopes that the current combination of medications will ...
- By BKuz · Posted November 17, 2008
- 0 replies
- Don't miss this wonderful opportunity to enjoy hands on activities and cool demonstrations with Scientist Mr. Freiland this Thursday, Nov. 20th at 7:00pm in The Art Room! You've never been to a Science ...
- By rybrans07 · Posted November 15, 2008
- 5 replies
- Hi my name is Kim and my daughter Sarah has FMF. I read on someone else's journal that there are Conventions for families dealing with Periodic Fever Syndromes to get together for the weekend. This journal ...
- By rybrans07 · Posted November 14, 2008
- 0 replies
- My daughter Sarah is a patient at NIH as well as Children's Hospital of Philadelphia. After 2 long years of sickness she was finally diagnosed with FMF in April 2006 by the Doctors at CHOP (Children's ...
- By BKuz · Posted November 10, 2008
- 0 replies
- Join us this Friday Nov. 14th at 3:30 pm on an exciting field trip to The Maryland Science Center in Baltimore's beautiful Inner Harbor Space is limited so please sign up at the welcome desk ASAP! Looking ...
- By BKuz · Posted October 28, 2008
- 0 replies
- November is going to be a month in Educate INN you don't want to miss! Please check out the fun schedule below and email me at kuzmab@mail.nih.gov if you would like a tutor to give one of your children ...
- By BKuz · Posted October 14, 2008
- 0 replies
- This is a wonderful story about the authors who will be at The Inn Monday to speak about "It's Good to Know a Miracle: Dani's Story." Parents Pen a 'Survival Guide' to Leukemia http://www.washingtonpost.com ...
- By BKuz · Posted October 14, 2008
- 0 replies
- Please join us for a Meet th Monday October 20th at 5:00pm Meet the Authors of the book “It’s Good to Know a Miracle: Dani’s Story”. This story is a journal of one family’s struggle with leukemia, written ...
- By BKuz · Posted October 6, 2008
- 0 replies
- Learn INN: Tuesday study halls with snacks! during parent reception by the bistro 4:30- 5:30 pm **on Tuesday Oct 14th and 28th Learn INN will be from 5:30- 6:30 pm** Explore INN: Oct 16th and 18th 7:00 ...
- By KathyG · Posted September 9, 2008
- 6 replies
- Today we went to see his specialist. We found out today that he IS NOT going to send him to Duke University afterall. He is going to talk to a CF Pulmonary Doctor and try to get the DNA screening for ...
- By BKuz · Posted September 9, 2008
- 0 replies
- Educate Inn is very excited to be kicking off the new school year!!! Over the past few months the classroom activities (Explore Inn), field trips (Adventure Inn), tutoring, and homework helper/ study ...
- By poetindisstress · Posted September 7, 2008
- 3 replies
- To all of those who know how special it is to be a grandparent, this is your day! Enjoy, Laugh, cry happy tears, just know how much your loved an appreciated, to have the privlage to be called Grandparents ...
- By poetindisstress · Posted September 4, 2008
- 5 replies
- TUESDAY, Aug. 19 (HealthDay News) -- Grapefruit juice, long known to boost the absorption of certain medications, isn't the only juice that doesn't mix well with drugs, according to the Canadian researcher ...
- By KathyG · Posted September 3, 2008
- 9 replies
- Today I had to take my 6 yr old grandson to the emergency dept. He has been sick for 2 days. In my earlier post I explained that he has a pancreas problem and is taking enzymes. About 5 weeks ago the ...
- By Brian · Posted August 27, 2008
- 48 replies
- At Inspire, we think about privacy all the time. Virtually every web site has a privacy policy; you can read ours here: http://www.inspire.com/about/privacy/. But simply following the letter of a privacy ...
- By CanadaNuse · Posted August 21, 2008
- 2 replies
- There has been alot going on, since our last post, and honestly I don't know where to start. We had over TEN doctor visits and still not closer to anything. But we keep on getting more clinical DX for ...
- By Jordensmom · Posted August 20, 2008
- 2 replies
- Well what a painful journey. But I guess with pain and frustration comes wisdom and discovery. Jorden has been taking Colchicine for 8 months. the first 6 months we did not see much of a change, but there ...
