Search 
Friday, July 30, 2010 ..:: Blog ::.. Register  Login

“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

Location: BlogsThe cure4treebeard Blog    
Posted by: Daddy 8/10/2008 4:11 PM

It's Jodi again.  I tried to get the blog up while we were in Cincy, but it just didn't happen.  So...here I am a little late again. 

Last week was a good one in Cincy.  Jacob did awesome with his port access and was a pleasant travel companion.  Dr. Filipovich dropped his prednisone (steriod) down from 3ml to 2ml daily.  I think we'll be at this dose for awhile now.  The next step would be to move it to 2ml every other day, but I think we're going to try first to cut back the photopherisis treatments from three times a week to two times a week.  Last time they cut back the steriod and the photo treatments at the same time it didn't work.  We sort of asked if we could try to cut the photo treatments back just due to the logistics of needing a babysitter for Justice for 4 days now that Brian will be going back to work in a couple of weeks.  Cutting  the photo back allows us to only be gone for two days.  Brian should find out this week just when they plan to make the change.  I'm hoping they will make the change for next week as Monday is Brian and Jacob's birthdays and we'd be able to all be home together if they do.

The best news came on Thursday when our nurse practitioner nonchalantly informed me that Jacob can go to Preschool.  I was flabbergasted.  Really, I didn't quite believe her because they had been telling us all along that they didn't think he would be able to go.  Gretchen sort of laughed and said that they do a good job of teaching us how to be as parents when our kids are sick, but not so good when are kids are doing better.  Brian and I are ecstatic, but also scared.  This is a big step towards normalcy for our family.  Both the boys had been accepted at the Preschool at Grove City College, but we hadn't visited as we thought it wasn't really going to happen.  Well, Brian got an appointment for Friday afternoon and we took the boys with us.  We feel a tremendous sense of peace that this is where the boys are to be.  They are both really excited.  Jacob's class meets M,W,F from 12:30-3pm and Justice's class is on T&Th from 12"30-3:00pm.  Jacob will have to miss the Wednesday classes as we'll be in Cincy, but still he'll be there 2 days a week. We are thrilled.

Thanks for checking in on us.  We continue to be blessed by your love and support.

 

Permalink |  Trackback

 

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!

 Blog History Minimize

  
 Search_Blog Minimize

  

___________________________________________________________________

Email:  cure4treebeard@gmail.com 

Copyright 2006 by Jacob Treebeard Brown   Terms Of Use  Privacy Statement
DotNetNuke® is copyright 2002-2010 by DotNetNuke Corporation