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St. Nicholas Day: 5-year Anniversary! |
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The cure4treebeard Blog
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By Daddy on
1/1/2012 6:53 AM
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December 6, St. Nicholas Day 2011, marked the 5-year anniversary of JT’s bone marrow transplant. It is incredible that he’s come so far, that he’s alive and doing so well. Thank you for all of the prayers that helped and strengthened him and carried our family along the way.
I’ll get back to the anniversary, but first let me fill in some gaps. Since my last update in mid-October, things have been moving right along here at the Brown house. I’ve never seen such a celebration of Halloween as I witnessed this year – it was a weeklong cornucopia of candy and costumes. There was a Cub Scout party, parade and hayride; there was a Halloween family gathering at Camp Lutherlyn; there was trick-or-treating in Olde Town Grove City; and there was trick-or-treating in our neighborhood. We carved pumpkins. It seemed to never end. JT was a ninja, and Jodi pulled out all the stops and sewed an award-winning (literally, at the Cub Scout party) handmade Angry Bird costume for Justy. Aunt Rebecca ...
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September/ early October 2011 |
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The cure4treebeard Blog
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By Daddy on
10/17/2011 8:09 PM
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Fall in western PA is simply outstanding: a break from the heat, spectacular leaves, Steelers football, and apples at Emmet’s Orchard – what’s not to love?
It’s been a good season for us. The boys both signed up for swim team again and they’re practicing hard. In fact, at the end of September JT received the “Sportsmanship Award: for Outstanding Achievement in Swimming,” and let me tell you – he was stoked. They’re working with him on the butterfly stroke now so he seems to be growing into the sport. Both boys enjoy swim practice and it’s a great way for them to burn the post-school energy out. As one of the other parents said to me, “It takes the edge off.” Their first meet of the season is this Saturday (Oct. 22) so we’re already gearing up for a little competition. They’re both having a lot of fun with it at this point, and that’s the main thing. JT’s doctor says that swimming is about the best thing she can imagine for him to do to keep his range of motion, so it’s a win all ...
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July/August 2011 |
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The cure4treebeard Blog
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By Daddy on
9/6/2011 4:33 PM
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It sounded a lot like the soundtrack from Finding Nemo around here this morning, with cries of “First day of school! First day of school!” coming from both boys. Seeing them all dressed and ready to go made me wonder where the summer went, and that reminded me that I had some blogging to do…
It was a hot two months for us. For a family that likes to get out and about, we were housebound for much of the last two months. Just a few moments outside were enough for JT to overheat, and we didn’t even venture out to the pool very often. Instead, we just hunkered down in the air conditioning and looked forward to Fall.
In July, my dad decided to build the mother of all treehouses over at camp. No description of mine will do it justice. Let me assure you that you’ve never seen anything like it. It is huge, it is beautiful, and it is up there. Plus, it has a “crow’s nest,” a second story well above the first deck, accessed by a ladder and a trap door. A pulley system and a ...
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June 2011 |
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The cure4treebeard Blog
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By Daddy on
7/8/2011 1:54 PM
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Well, I finished the last blog entry by writing that JT’s life had been blessedly free of any medical drama for a long time. Ironically, he spent that same night in the ER. So…I won’t be writing that again soon.
Here’s what happened. In Hilton Head, JT was really taken by the tide pools and he wanted to spend a bunch of his time hanging out there. While looking for “aquatic life,” he cut his foot on a shell or rock under the surface. We cleaned it out and figured that the salt water would be good for it. However, by the time he got back to PA, it was angry, red, and infected. We sent a picture to the docs in Cincy and they said to take him to the local ER. The next day, he was transferred to Pittsburgh via ambulance; we thought he was going to have surgery to remove a piece that was stuck in his foot and that this might cause him to miss the last day of school.
However, the Pitts docs were great. The looked at the X-rays again and determined that no sur ...
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May 2011 |
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The cure4treebeard Blog
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By Daddy on
6/5/2011 12:17 PM
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May 2011
Summer has finally arrived! Here in western PA, we had a regular monsoon season instead of a spring. I’ve never seen it so wet for so long. We’ve finally seen the sun during the last week and that’s been a welcome reprieve.
May was good to us. Jodi ran her marathon on May 7. She was awesome. The course was beautiful, following the Susquehanna River for long miles, veering off-road for a stretch, and crossing both a railroad trestle and an antique covered bridge. I greeted her with signs and encouragement at a couple points along the route, and we even ran together for two miles during the 2nd half. Whereas I was nearly incapacitated after I ran my marathon several years ago, Jodi crossed the finish line smiling gracefully, touched her toes a couple of times, and announced that she was ready to grab a quick shower and go shopping at the local festival. Very impressive. And to top it all off, she was awarded a trophy – 3rd place finisher for her ...
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April 2011 |
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The cure4treebeard Blog
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By Daddy on
5/3/2011 2:17 PM
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April 2011: another month that gave us many reasons to be grateful.
In late March, after I posted the last update, we headed up into God’s Country to finish our tour of the Allegheny GeoTrail. It was a weekend full of adventure. There was still snow up in the mountains, deep and frozen. For one of the caches we had to post-hole our way, one laborious step after the other, while the boys “sledded” on the frozen snow on the downhills using nothing but their jackets. I put the van into a ditch on a “No Winter Maintancence” road, we slung mud up to the top of another mountain, found a cache under a bridge… it was a great time. The grace moment was when Justy found a cache that we weren’t even looking for, with no coordinates, all by himself! Since one of the other caches we’d banked on was inaccessible because the snow, he got the credit for saving the weekend. We spent one night up in Potter County in a rustic Bed & Breakfast all in one room together – it was great. It was y ...
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March 2011 |
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The cure4treebeard Blog
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By Daddy on
3/13/2011 1:41 PM
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Hey there friends! Thank you for checking in on our family. I'm committed to monthly entries this year, so please keep coming back. Here's what's up for March...
The Steelers lost and we put away our jerseys for another year. Otherwise, February was a great month. JT's teacher invited the parents in the night before Valentine's Day to decorate desks, etc. As you'd imagine, Jodi did a great job and the next day was an exciting one for JT. Justy was all about the candy, and since JT donates all of his to his younger brother, Justy was in heaven. In fact, tonight at dinner, he argued passionately that "candy" was one of the four food groups despite our attempted lesson on good nutrition.
When JT and Jodi were in Cincinnati 2 weeks ago, they made a big poster about mudpuppies during their long day at the hospital - we'd seen one at camp and it captured JT's imagination. Anyway, they took the display to the Cincy Museum of Natural history, one of JT's favorit ...
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Super Bowl Sunday update! |
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The cure4treebeard Blog
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By Daddy on
2/6/2011 12:42 PM
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Super Bowl Sunday update!
So, my New Year’s resolution is to update our Cure4treebeard friends once per month. If you’re reading this, you must be a particularly tenacious and gracious person. You’ve stuck with us for a long time, you’ve continued to check the site, you haven’t forgotten to think about and pray for our son, and for that we are very, very grateful. Check in once a month from here on out and there will be news.
Well, after such a long break in blog entries I suppose I should begin with the important stuff first: Pittsburgh’s in the Super Bowl! Jodi has been playing the Steelers fight song every morning and Justy responds with some mean breakdancing moves under the breakfast bar. They’ve sported their No. 43 jerseys often this Fall, even to church. We’ve watched every game but two, and though no one in our family would claim to grasp the nuances of the game, the boys have picked up enough to run after and tackle each other at every opportunit ...
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Summertime! |
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The cure4treebeard Blog
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By Daddy on
6/16/2010 7:15 AM
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I guess my lateness is becoming chronic. Sorry. It's been a busy and wonderful year. Justy finished up preschool in April and JT just finished Kindergarten a few days ago. The last week of school JT participated in an end of the year program. I watched in awe as he stood up front singing, dancing and motioning with such exuberance that it filled my eyes with tears of joy. There was a time when we thought JT would not be able to go to school and now here he was, amongst a hundred other children finishing his first year. It was a great day.
The week before Memorial Day Weekend JT, Justy and I got to go to Hilton Head with Brian's parents and his sister Rebecca. Poor Brian had to stay home and work. We had a wonderful time. The boys absolutely LOVED the beach and ocean this year. They weren't a bit afraid of the waves, which earned them wearing life jackets when it was rough. ...
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Still Recovering from the Flu |
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The cure4treebeard Blog
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By Daddy on
4/20/2010 10:18 AM
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Sorry I'm a little late on this update, we had a pretty eventful Easter and we're all still trying to get back on our feet. JT was scheduled to be in Cincinnati the Tuesday and Wednesday after Easter, but we had to cancel and ended up going the following week.
Here's the saga...During the wee hours of the night on Good Friday Justy woke up vomitting all over his bed. We were up all night with him. The following morning I ran my first ever half marathon as Brian stayed home and cared for poor dry heaving Justy. As soon as I got home our pediatrician called to say Justy should go the the ER to be evaluated and get fluids. He didn't cry a bit when he got his IV started and couldn't wait tto get home to tell JT that he was brave just like him. After the fluids and anti-nausea medicine Justy perked right up and they sent us home. The next morning we headed over to Brian's parent's house in Cook Forest (about 2 hours ...
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Raise money for the National Foundation for Ectodermal Dysplasias simply by clicking your mouse! GoodSearch.com (powered by yahoo.com) is donating money to charities for use of their search engine. To use it, install the GoodSearch toolbar to the top of your browser screen and then type in the charity (National Foundation for Ectodermal Dysplasias) and then search as you would on Google.com or Yahoo.com. The NFED gets a monetary donation for every search! The more folks that know about this, the greater the donation to NFED, and hence the more money there is to fund research on Jacob's condition and others like his. Thank you!
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Blog History
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