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“He is like a tree, planted by streams of water, which yields its fruit in season, and whose leaf does not wither.” --Psalms 1:3

Author: Daddy Created: 10/30/2006 6:06 PM
The cure4treebeard Blog page is your opportunity to walk with us, to be there as our family's story unfolds. Thank you in advance for joining us on the journey.

Day +145 (Update by Jodi)
By Daddy on 4/29/2007 9:32 PM

Where to begin?  My heart is overflowing tonight as I bask in the joy of the past few days…all four of us under one roof,  all four snuggled together in one bed, all four riding in the van, all four pig piling on the living room floor - each delighting in God’s precious gift of family after five months of separation.

 

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Day +144
By Daddy on 4/28/2007 9:21 PM

Well I didn’t leave tonight after all.  It’s hard to go. 

No one slept much last night and we were all up well before 7:00 (along with the 5 helicopters circling our hotel) this morning so we wouldn’t miss anything.  We were able to watch the lift-off right out of our hotel window – pretty neat.  JT was beside himself, as we expected, but Justy really got into it too, exclaiming “There’s another one!” as more and more balloons took off.  We got a good look at them as they lingered ...

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Day + 143
By Daddy on 4/27/2007 8:57 PM

Happy birthday Justice!  We had a great day, shared some really great moments together.  JT’s hemoglobin count was about the same and his other test was inconclusive.  But we got the green light and JT left Cincinnati for the first time since October.  Jodi made a cinnamon loaf for breakfast and a homemade dinner and then packed us boys into the car this afternoon and we headed south. 

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Day +142
By Daddy on 4/26/2007 8:49 PM

Tomorrow is Justy’s 2nd birthday and we’re celebrating big, stepping out in style.  We’re actually going away for an overnighter to Louisville, KY!  As part of the Kentucky Derby festivities there are some hot air balloon events planned for this weekend at the KY State Fairgrounds…on Friday night, there is a hot-air balloon light-up night at 9:00 p.m. and on Saturday morning there’s a race which means a mass ascension at 7:00 a.m.  We want ...

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Day +141
By Daddy on 4/25/2007 9:26 PM

JT was at the Day Hospital for the best chunk of the day.  It’s about the same:  long-term prognosis is very good, short-term problems are still pretty serious.  Please pray for hemoglobin.

Otherwise, I have to be honest – who wants to spend time writing a lengthy Blog entry when his family is together for a few stolen days?

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Day + 140
By Daddy on 4/24/2007 7:37 PM

Together at last.  It was as sweet as you could imagine – the boys running to hug each other, laughing, shouting each other’s name.  Jodi and I have sore faces from smiling so much this evening.

And in terms of the blood draw, platelets are up!  Hemoglobin remains critically low and there are mixed reports on the calcium.  JT goes in for an infusion marathon at the Day

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Day +139
By Daddy on 4/23/2007 7:00 PM

Well, no labs this morning – I think someone forgot to schedule them so we’ll wait until tomorrow.  He’s got a little rash that looks like the kind of thing kids get when their platelets are low, so please pray earnestly that his platelets rebound, that his immune system is not making antibodies against them.  We also hope for good calcium and hemoglobin numbers as I said last night.

V during the night and this morning too…plus more D today.  I still believe there has been definite improvement this week, but I’m anxious for total improvement.

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Day +138
By Daddy on 4/22/2007 7:23 PM

Good day, not too much to report.  JT is sleeping a lot:  12 hours last night plus a two-hour plus nap this afternoon.  Despite this horizontal time he’s wiped out by 8:15ish.  But since we’re up about 5 times each night it’s not uninterrupted rest.  We’ve always been told that sleep in imperative for healing and for good immune function, so I’m glad.

Otherwise, pretty uneventful.  We watched some shows, read some ...

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Day +137
By Daddy on 4/21/2007 7:31 PM

I’m squinting to see more evidence of a turning point.  He had violent V this morning and D throughout the day, but no V tonight and I think the D is improving overall.  I don’t know, I’m prone to seeing the glass half full, but I truly think there’s a difference from when I got here a over a week ago.

JT and I were looking at pictures of Jeep Wranglers online today and daydreaming about off-roading together someday in the future when I remembered that you can rent golf carts at the Sculpture &l ...

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Day +136
By Daddy on 4/20/2007 9:13 PM

Engraftment results:  100% donor cells!  Awesome, wonderful evidence of God’s continued mercy and healing. 

 

And while I just admitted to Jodi on the phone that I’m looking hard for any evidence of a turning point, I have to say that today was a significant improvement.  The diaper changes didn’t involve screaming, and his episode ...

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Raise money for the National Foundation for Ectodermal Dysplasias simply by clicking your mouseGoodSearch.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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