Saturday, November 26, 2016
Monday, November 14, 2016
wish list
Attention everyone...I purchased the Mophie juice pack for AJ from Dave's wish list...Amazon has NOT taken it off and they won't let me even say I purchased it from somewhere else. So anyway, I got it!
Thursday, October 13, 2016
Sunday, October 2, 2016
Mike's band again
Yesterday, Dad and I went to Fort Zumwalt North to see Mike's band perform. It was our first chance to see them since they got rained out when we went down to Camdenton's Homecoming 2 week ago. The band is SPECTACULAR!! They ended up getting 2nd place behind Blue Springs South (or North, whichever)....anyway they did really well and are a great band.
Saturday, September 24, 2016
Mike's band (Pride of the Lake marching band)
Mike's band made finals at Bands of America in Clarksville, Tennessee. Now I'm just waiting to see how they do. Oh, they got second in their class (2A) and first in their class for best visual performance.
Sunday, September 11, 2016
September 11th
This date will always carry with it a very sad memory for our country and for humanity, but it also carries with it one of hope and determination for our family. Ten years ago today, we started a journey that changed Austin’s life forever. Partnering with the University of Arkansas and Duke University, we dared to take on Austin’s deadly peanut allergy through a new oral immunotherapy clinical trial. Over the course of the first year, while sweet baby Nathan gestated, Austin ingested increasing amounts peanut protein on a daily basis. Our then 4 year old son travelled just under 12,000 miles that first year out of sheer hope. Subsequent years had flights from Florida back to Arkansas Children’s Hospital to increase doses, do bloodwork and skin prick tests, and sometimes to administer food challenges.
It wasn’t easy, it wasn’t fun and it wasn’t without bumps in the road, but we/he stuck it out and something amazing happened. It worked.
So now in reflection of what is the single best thing I’ve ever done with my life, there’s a pause for gratitude. We never accepted ‘there’s nothing to be done’. We never stopped asking questions. Never stopped reading and learning everything we could get our hands on. We never gave up. And aside from the legwork and determination is the crazy luck we had finding and getting accepted into this trial.
The protocol is still in test phase and still not open to the public. Somewhat amazingly, no real changes or improvements by the medical community have been made to determine what causes allergies nor how to treat them. To date, there are probably still less than 200 people in the United States who had the opportunity to participate in this study. What we found was truly a golden egg- a miracle.
It’s never lost on us how different Austin’s life will be. It all started on this day 10 years ago.
Here’s the email update I sent out on that first day:
From: Nina Fenn [mailto:ninafenn@yahoo.com]
Sent: Monday, September 11, 2006 4:09 PM
To: ninafenn@yahoo.com
Subject: Austin status
Took Austin to Arkansas Children's Hospital for appointments today (9/11) and tomorrow. Objective was to very slowly introduce peanuts into his system to create a tolerance to the protein and- hopefully- either create a boy who would not be allergic, or, at least, not as severly allergic.
Today we started with babysteps- hoping to get to 50 mg (equiv of 1/8th of one nut). We got Austin to 25mg- at which point he decided he would have no more and he began verbally protesting. The nurse brought his next dose in cookies and cream ice cream- his favorite- and he said, "I'm not eating that. it might have peanuts in it".
He then develops a cough and itching. 30 minutes later he's full on scratching and I pull his shirt off to find he's COVERED in hives. His breathing is somewhat labored and they give him Albuterol (the med for asthma attacks) and benedryl. As we stand at 4pm central, last dose being at 130 pm central, he's still with hives all over- but breathing is normal. He's tired from the benedryl.
Everythings under control now. Just wanted to let you all know that it IS confirmed that as little as 1/16th of ONE PEANUT will create a full on allergic reaction involving breathing issues and hives in Austin. It's distressing to see- but good to know for sure the severity of the situation.
We'll be back tomorrow where they try him with 1/2 the dose that caused the problem (12mg) and observation. Will update then.
Fingers crossed-
AustiNinAllAnDave
It wasn’t easy, it wasn’t fun and it wasn’t without bumps in the road, but we/he stuck it out and something amazing happened. It worked.
So now in reflection of what is the single best thing I’ve ever done with my life, there’s a pause for gratitude. We never accepted ‘there’s nothing to be done’. We never stopped asking questions. Never stopped reading and learning everything we could get our hands on. We never gave up. And aside from the legwork and determination is the crazy luck we had finding and getting accepted into this trial.
The protocol is still in test phase and still not open to the public. Somewhat amazingly, no real changes or improvements by the medical community have been made to determine what causes allergies nor how to treat them. To date, there are probably still less than 200 people in the United States who had the opportunity to participate in this study. What we found was truly a golden egg- a miracle.
It’s never lost on us how different Austin’s life will be. It all started on this day 10 years ago.
Here’s the email update I sent out on that first day:
From: Nina Fenn [mailto:ninafenn@yahoo.com]
Sent: Monday, September 11, 2006 4:09 PM
To: ninafenn@yahoo.com
Subject: Austin status
Took Austin to Arkansas Children's Hospital for appointments today (9/11) and tomorrow. Objective was to very slowly introduce peanuts into his system to create a tolerance to the protein and- hopefully- either create a boy who would not be allergic, or, at least, not as severly allergic.
Today we started with babysteps- hoping to get to 50 mg (equiv of 1/8th of one nut). We got Austin to 25mg- at which point he decided he would have no more and he began verbally protesting. The nurse brought his next dose in cookies and cream ice cream- his favorite- and he said, "I'm not eating that. it might have peanuts in it".
He then develops a cough and itching. 30 minutes later he's full on scratching and I pull his shirt off to find he's COVERED in hives. His breathing is somewhat labored and they give him Albuterol (the med for asthma attacks) and benedryl. As we stand at 4pm central, last dose being at 130 pm central, he's still with hives all over- but breathing is normal. He's tired from the benedryl.
Everythings under control now. Just wanted to let you all know that it IS confirmed that as little as 1/16th of ONE PEANUT will create a full on allergic reaction involving breathing issues and hives in Austin. It's distressing to see- but good to know for sure the severity of the situation.
We'll be back tomorrow where they try him with 1/2 the dose that caused the problem (12mg) and observation. Will update then.
Fingers crossed-
AustiNinAllAnDave
First Day of School!
The boys got screwed out of two weeks of summer this year, as school started on August 10th this year. That perhaps explains their less-than-enthusiastic faces. Of course, they'll be out of school by Memorial Day, so that's something for them to look for.
Lots of Catch-Up, Part 2
The boys took me out for dim sum on Father's Day
Austin and Nathan in the pool, with Abby looking on.
I'm not sure where this was taken.
Nina and I spent a long weekend in NYC while the boys were at Grandma's
Boys came home, finally...
Summer vacation in Toronto
Nathan and AJ are holding Kinder Eggs. Nathan was especially fascinated by them because they are illegal in the United States, because they're basically plastic eggs covered in chocolate.
While we were in Toronto, we went to iFly, which is an indoor skydiving simulator. Everyone loved it (Austin and I didn't do it, though.)
The girls are Sierra (tall), Katarina (to the right of Nate), and Arianna (to Nate's left.) Sierra is a few days younger than AJ, Katarina is six months older than Nathan, and Arianna's two years younger than Nathan.
We went to Niagara Falls the last weekend of the trip.
Not a bad view from our hotel room.
Lots of Catch-Up, Part 1
First in a series of catch up blog posts, as we have failed miserably at keeping up. Not that a lot of stuff hasn't been going on...
We took the boys to the Kennedy Space Center over Spring Break.
Nathan's birthday box, before...
...and after
Nathan's birthday cake. The kid behind Nate is Jack, his best friend. The other kid is Adam, AJ's buddy.
Mom brings Nate pizza for lunch sometimes.
Minor League Baseball in Dunedin in April
Mom and the boys at the wedding of Jessica (niece)
The boys out by the tire swing, before we had that big tree removed.
Friday, July 15, 2016
Sunday, May 8, 2016
Saturday, April 9, 2016
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