This past week we had another check-in with Noah's primary doctor regarding his Localized Scleroderma. You can read my previous updates on his battle with it here; essentially it's a disease that attacks his skin, tissue and bone structures near the skin. There hasn't been a cure discovered yet, and while it's a lifelong condition … Continue reading Noah’s Good News
Category: Noah
The Latest on Noah
It's been a while since I have posted an update on Noah and his battle with Localized Scleroderma. You can read some of the past updates here. The short recap is that he originally began showing symptoms of Scleroderma attacking the skin on his face around two years old, but doctors were unable to discover … Continue reading The Latest on Noah
Noah and Scleroderma
It's been a while since I've posted an update on Noah and his battle with Scleroderma. You can find my previous posts/updates here. It's starting to feel like we go through spells of very little to report ... and then get slammed with waves of challenges. At the moment, it feels like a bit of … Continue reading Noah and Scleroderma
An update on Noah
It has been a LONG time since I've given any updates on Noah and his scleroderma, mostly because there hasn't been much to report. Towards the beginning of the year we had to make the switch from methotrexate to celcept to treat it. It's frustrating, because neither drug is actually designed for his disease - … Continue reading An update on Noah
Living with Scleroderma
A great video on what life with Scleroderma is like. I think she does a powerful job of describing the disease in an understandable way, what it's like going to doctors and them not knowing or recognizing it, and the realities of vital drugs with side effects that are brutal. The drug she mentions, methotrexate, … Continue reading Living with Scleroderma
Doctor’s aren’t magicians?
I was just talking with someone the other day about the subtle expectation we tend to have that given enough resources, anything can be fixed, including our health. He mentioned how we always think doctors know everything, but one his friends (a doctor) admitted he was faking it half the time. I laughed and said … Continue reading Doctor’s aren’t magicians?
Changing it up with Noah
So everything got changed up on our six year old, Noah last week! Sheesh ... You can read some of my previous posts about Noah and his health challenges (Scleroderma and Ptosis) by clicking here. But back to the point. Basically, we got called into the doctor's office because Noah's latest round of blood work … Continue reading Changing it up with Noah
Noah’s street cred
Today was Noah's monthly trip to the hospital for his blood work. Because the medication he's on for his localized scleroderma is powerful and has the potential for side effects, his blood has to be monitored. The hope when we began a year and a half ago was that there would be enough margin of safety … Continue reading Noah’s street cred
Noah sees the good
Noah, our six year old, is a trooper. He gave me a lesson in perspective today. For the last year and a half or so he has had to go to the hospital every month for bloodwork. Since the fall, he has also had to have a weekly injection at home. So today was his … Continue reading Noah sees the good
Life Tattoos
http://vimeo.com/moogaloop.swf?clip_id=19079446&server=vimeo.com&show_title=0&show_byline=0&show_portrait=0&color=00adef&fullscreen=1&autoplay=0&loop=0 The other weekend, when Heather and I were at the National Youth Worker Conference in Atlanta, there was a rapper who opened some of the main sessions named Propaganda. He really stood out to Heather and I, for a variety of reasons. We loved his style, his message, his presence - hopefully one of … Continue reading Life Tattoos