Saturday, December 31, 2011
Monday, December 26, 2011
Monday, December 26, 2011 1:18 PM, EST
We had a great Christmas! Ally got everything she asked for and more. She is very easy to spoil! We had a fabulous brunch with both sides of the family. Ally's most favorite present was the bounce house Santa brought! It is small enough to fit in her playroom, and big enough to do jumps, flips and rolls. We are looking forwards to lots of playing with friends this week.
Ally has a blood draw (HAMA) this Thursday. We will have results on January 4th.
On January 3rd Ally has a CT scan. We think she also has an MIBG and bone marrow pull that week, but we have not received the schedule yet.
Happy New Year! We can only hope that 2012 is as happy and healthy as 2011 was!
Posted by puddle at 12/26/2011 03:28:00 pm
Posted by puddle at 12/26/2011 09:59:00 am
Saturday, December 24, 2011
Three days ago, esophagus pretty much shut down for 36 hours. Eating was pointless, though I kept trying. Virtually everything came up. Understand: coming back up does *not* equal vomiting. To vomit, it actually has to get into the stomach. This was not.
Net result, dehydration. Dehydration means messed up electrolytes. Messed up electrolytes means, among other things, dizziness and cramping. That pretty much describes midnight to morning.
First: calcium. Nothing. . .
Then: magnesium. Nothing. . .
Finally: potassium. It worked. . .
Thankfully, my early warning system is working. But I 'spect only since I'm already so out of whack. Have I mentioned that I'm *tired* of being out of whack?
Was contemplating my 60 pound weight loss between June and the end of September/Emergency Room. A calorie deficit of 210,000 calories. A 1,750 deficit every day for 120 days. (At 150 pounds, your body at rest needs 1800 calories per day.) I wonder if one single soul, medical or otherwise, has surmised what this might mean to an actual life. . . .
Posted by puddle at 12/24/2011 12:33:00 pm
Thursday, December 22, 2011
FDA Rare Disease Patient Advocacy Day
Please plan to join this webcast or visit in person. Ask your doctors to
attend on behalf of the multitudes who have Achalasia. If any of you can attend,
and speak this would be wonderful. See the links below to register and get
FDA Rare Disease Patient Advocacy Day
Development is announcing the following meeting: FDA Rare Disease
Patient Advocacy Day. This meeting is intended to enhance the awareness
of the rare disease community as to FDA's roles
and responsibilities in the development of products (drugs, biological
products, and devices) intended for the diagnosis, prevention, and/or
treatment of rare diseases or conditions. The goal of this meeting is to engage
and educate the rare disease community on the FDA regulatory processes.
This educational meeting will consist of a live and interactive simultaneous
Web cast of presentations provided by FDA experts from various Centers
and Offices, as well as from outside experts. The interactive meeting
will include two general panel discussion sessions, as well as afternoon
breakout sessions for more in depth information on the roles of FDA. In
addition, on site attendees will have an opportunity during lunch to
engage with FDA and outside experts in a small group setting.
For more information please visit: FDA Rare Disease Patient Advocacy Day
Posted by puddle at 12/22/2011 01:21:00 pm
Tuesday, December 20, 2011
Monday, December 19, 2011 11:20 AM, EST
I have had many requests to know what Ally asked Santa for. Here is her list:
I have it on good authority that Santa will deliver these gifts (and maybe even a couple more!)
Posted by puddle at 12/20/2011 11:10:00 am
Monday, December 19, 2011
An antireflux procedure was performed to prevent postoperative reflux. A posterior (Toupet) hemifundoplication was used in patients with a modestly dilated esophagus. And anterior (Dor) fundoplication was used with the most dilated esophagi, because a posterior fundoplication appeared to cause a relative outlet obstruction by excessively angling the gastroesophageal junction anteriorly.
I'm betting on the Toupet. My esophagus was hardly dilated at all in barium swallow.
Posted by puddle at 12/19/2011 08:23:00 pm
Sunday, December 18, 2011
Sunday, December 18, 2011 8:33 AM, EST
For those of you who have met Ally, you will know the significance of this statement:
Ally sat on Santa's lap yesterday!!!
Ally is exceptionally shy. We have seen Santa around this holiday season, but Ally is content to look on from afar. Yesterday, at the New Hampshire Childhood Cancer Lifeline Party, Santa showed up. He had a wonderful Sleeping Beauty doll for her. When he was finished passing out the gifts he asked if anyone wanted to come up and sit on his lap. We ALWAYS ask Ally if she wants to do something, and usually she says no, but we always want to give her the opportunity. She immediately stood up and was ready to go. Ally patiently waited for the little girl in front of us in line, then walked right over to Santa and turned around so he could pick her up. I did have to hold her hand the whole time, but she spit out the 3 things in her list as quickly as I have ever heard her speak, and then hopped down. It was hilarious! We were so proud of her.
Posted by puddle at 12/18/2011 09:54:00 pm
Vaclav Havel 1936 - 2011
Posted by puddle at 12/18/2011 09:37:00 am
Friday, December 16, 2011
Surgery on December 27 at UVA Hospital, Charlottesville, Virginia. What a *great* Christmas present, lol! And the surgery is? A Heller myotomy with either a Dor wrap, or a Toupet (he wants to decide *while* he's in there, depending on what he's seeing). (I like that! -- It means he knows what he's seeing. . . . ) Expected duration: two hours; expected hospital stay: day or two, depending on how quickly I can swallow again. Then two weeks recovery, at minimum, then we'll see.
Did I mention that I'm pretty happy about finally getting someone to actually MOVE. . . .
Posted by puddle at 12/16/2011 02:07:00 pm
Wednesday, December 14, 2011
Saturday, December 10, 2011 1:32 PM, EST
So it seems Ally's HAMA was not as low as we first thought, or it has gone up. Anyway, she is HAMA positive and we are going to test again on December 29. We will know results on January 4. If she is negative we are tentatively set to be in NYC for the week of January 9th.
In the meantime we have been enjoying some fantastic Christmas activities. Last weekend we attended the Make-A-Wish Christmas Party (which Ally loved!). We have decorated the house, put up our Christmas tree, visited the "Gift of Lights" at the Loudon Racetrack and made come crafts. Next weekend we have another Christmas party being put on by New Hampshire Childhood Cancer Lifeline.
I will update again when we have more Christmas news to share.
Posted by puddle at 12/14/2011 09:31:00 am
Saturday, December 10, 2011
Trapping the Moon...
Posted by puddle at 12/10/2011 08:02:00 pm
Friday, December 09, 2011
But the truth of it is, that as hard as my body was/is working, it is NOT enough on its own. Even IF it were to get no worse, I am unwilling to continue to live like this. Food is nice, but I am totally unwilling for it to become my only occupation for the rest of my life. And, too, I'm cheap: I HATE paying for and tossing most of what I've paid for. Makes me furious, lol!
Posted by puddle at 12/09/2011 05:53:00 pm
Monday, December 05, 2011
Quiet day, yesterday. Mostly doing some followup (well, a LOT) on the new ancestress my sister discovered. She's been sort of an icon in the family (the Indian Grandmother), never identified by name before. Evidently my mom told one of my brothers that we had an Indian Princess in our background. Well if being the daughter of a very important chief makes you a Princess, then yup.
Interestingly, he *wasn't* Native. He was born in Montreal, and captured by the Oneida as a child, and just stayed with them. He married a Cayuga woman, and became the Iroquois "governor" in PA. He named (last name) at least three of his children after the Quaker "governor" that he dealt with -- Logan. My GGGG Grandmother, Ann Shikellamy Logan married a Colonel John Gibson. Her brother, James Logan became a war chief in the Mingos and a great peace leader, until his family, including my grandmother was killed and scalped (by white men) at the Yellow Creek Massacre. Which was in WV.
The only survivor of that Massacre was my GGG Grandmother, Polly Gibson. Interestingly, her father, Col. John Gibson, had been captured by Indians as a teenager, and adopted, and so survived. . . .
Logan's Lament. . . .
"I appeal to any white man to say, if ever he entered Logan's cabin hungry, and he gave him not meat: if ever he came cold and naked, and he cloathed him not. During the course of the last long and bloody war Logan remained idle in his cabin, an advocate for peace. Such was my love for the whites, that my countrymen pointed as they passed, and said, `Logan is the friend of white man.' l had even thought to have lived with you, but for the injuries of one man. Colonel Cresap, the last spring, in cold blood, and unprovoked, murdered all the relations of Logan, not even sparing my women and children. There runs not a drop of my blood in the veins of any living creature. This called on me for revenge. I have sought it: I have killed many: I have fully glutted my vengeance: for my country I rejoice at the beams of peace. But do not harbour a thought that mine is the joy of fear. Logan never felt fear. He will not turn on his heel to save his life. Who is there to mourn for Logan?--Not one."
Got a picture of my GGGGG Grandfather, Shikellamy:
Looking mighty dark for a Frenchman, lol! And a pic of a bronze statue.
And Chief Logan. my GGGG Uncle:
Never been related before to peeps as had statues made of 'em. . . .
Posted by puddle at 12/05/2011 03:39:00 pm