1:00am on Christmas Eve. Hmm. Two important things to relate - one is the ongoing success of the matching challenge by the Morgans - it's going well. We still have some distance, but I think we'll make it. I published all that here todayRead more...
All my blogging friends told me "the first rule of blogging is that you actually have to do it." You have to actually write something once in a while. Silly me. Really I'm banking on your good graces understanding that I have a lot on my plate, but at the same time, who doesn't, really?
Another favorite: "When you want something to ge Read more...
So we get home and immediately Megan gets hired to be in a movie that stars Ben Affleck. I'm not sure how I feel about it. The casting call said something like "looking for a child with a neurological disorder." I sent them some stuff Monday, they interviewed Megan Tuesday, hired her Wednesday and did the shoot Thursday.
"If anybody needs h Read more...
Today was mostly uneventful. Megan complained of a splitting headache, quickly controlled by a Lortab, and there were some fun histrionics with specialists.
All things considered, the best part was washing my girl's hair. She truly could not understand that her incision would not be detectable. She looks great! This made her very happ Read more...
The Neurosurgery fellow came through this morning, at more like 6:30am, to check on Megan. He said "Let's see about some Physical Therapy for Megan." I guess he didn't get the memo :) I told him PT had already signed off on her, so he says "in that case, from a neurosurgical standpoint I don't see why... we can't release her today." I have to remind myself it's onl Read more...
Friday morning and all is well. Yesterday, Megan slept a lot and got up to use the bathroom a lot. In the late afternoon, her eyes flew open and you could tell she had just quickly transitioned from snoozy-sicksville to "ready to go" mode. Because of all her trips to the bathroom (don't know how else to say that) she was good at getting in and out Read more...
Good morning. I'll start by saying everything is fine, and I will publish this sentence as is while I write this blog entry in more depth. It's been a long 24 hours. More ASAP.
So where were we? Last blog entry found us surprised that Megan's surgery was already finished. It was a sort of hurry-up-and-wait all afternoon, as she Read more...
Okay, so I forgot to publish that little note with the "Sunset-Over-The-Caribbean" photo last night and probably made a few hearts leap. Sorry 'bout that.
Today is Wednesday. We got Megan here early - 5:45am - to have the cardio workup which went fine - no trace of that old VSD she may have had at one time (cardiologists here skeptical that she w Read more...
D'oh - I'm a blogdope! Wrote this last night and only published it just now. Ach. Megan's surgery is nearly finished and everything is going FINE. More in a bit.
We have an early morning tomorrow. Because they're letting us do the EKG in the morning (instead of making us go i Read more...
The trip to the surgeon's office for pre-surgery consultation was a long one. He finally saw us fully two hours after our appointed time. I'm sure national healthcare will fix this.
(That's an attempt at light humor, FYI.)
Data bits:
Neurologist will wire her up with electrodes to monitor the seizure activity while they poke Read more...
This is maddening. Megan was born with a congenital heart defect (a VSD) that caused her heart to stop on the operating table at age 2 months. We reported this to the surgeon today diligently.
Just got a call Read more...
Sunday after church we piled into the minivan and headed to Memphis. On this trip, Megan is to have a PET scan to be digitally superimposed over the scans from the last trip to Memphis, to make a three-dimensional rotatable mode Read more...
Non-verbal Cues
At the invitation of a professional art photographer, Megan and I are on our way to Michigan to meet up with Aaron Casteel and his daughter Maddie to participate in a show called “Flesh Tones”, which creator Suellen Hozman describes thus:
This show isn't about me, it's about Megan and other people with nevi a Read more...
I confess, I am spoiling my daughter rotten with even less restraint than usual. This thing with brain surgery has me more nervous about her future well-being than I have been in a long time.
The neurocutaneous melanocytosis (NCM) in Megan’s right temporal lobe has caused her to have seizures. NCM is the technical term for pigment deposits Read more...
Some people reading this already know I have the best job in the world, just ask me. Yesterday I had a very long talk with one of our most significant funders. I guess I use the word "funder" when I think of "organizations," compared to "donor" when I think of "individuals." In this case it's a private foundation that has a great interest in seeing scie Read more...
This is the most exhausted I've been in recent memory. It seemed like I was getting decent nights' sleeps in Megan's hospital room, but I'm thinking maybe I didn't, after all.
There's a very special wave of mental support that follows my daughter around wherever she goes. Kathy and I have known this since she was born. We've gotten quite used to it, and I ha Read more...
We have answers now to the rest of the questions. Based on the results of the neuropsychology evaluation, which also confirmed that Megan's right temporal lobe has long been compromised, we are now confident that removing the affected part of it will likely cause no further loss of function, and will end her seizures permanently.
This is going to be too long. (I'll figure this blog thing out, really I will).
Too many people who care about our daughter Megan, one of the reasons Nevus Outreach was created, don't have Facebook, so I am going to do a recap of those posts here.
You read in Kathy's piece Read more...
Today my daughter Megan and I headed to Le Bonheur Children's Hospital for a week of testing for Megan's seizures that has been on the books for months now. The point is to get to the bottom of what is causing her seizures and therefore, possible ways we can make them stop.
This neurological, epileptological workup is supposed to take anywhere from 2 t Read more...
[love]
Tuesday I ranted about how, for the second time, Yahoo!Groups had somehow reclassified the Nevus Outreach Support Group into their "Adult" section, i.e. "this group contains mature content" and "you must be 18 to enter", complete with target Read more...
[rant]
Today I want to vent about Yahoo! because Yahoo! drives me NUTS.
Yahoo! was among the first of the truly Big Boyz to offer a seemingly robust web-based group product. If you're an old-timer like me, and remember when 1200 baud was a luxury because most people had 300 baud, then you know about email "reflectors." Today the Nevus Outreach o Read more...
After much hullabaloo, I decided to go against the advice of one person whom I hold very dear, whose opinion counts more than most, and no, it was not my wife Kathy Stewart, and agree with some others that I should blog in my professional capacity as the head of one of the largest, if not the largest, patient advocacy group(s) for those affected by large c Read more...
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