The Journey We Are On.....

It seems like we have been fighting one illness or another since well before Thanksgiving. This most recent illness that began almost two weeks ago with two days of fevers for Ethan, a Sunday morning visit to the doctor, the start of Tamiflu, then the beginning of an antibiotic that led to horrible diarrhea and the worst diaper rash Ethan has ever had, seems to be finally coming to an end. We pray! Ethan's little bum is healing -- we took him off of the antibiotic on Monday (he started on it on Thursday and finished up the Tamiflu on Friday) after the diarrhea and diaper rash started to get so worrisome that we knew we had to do something to try to stop it. We had been using regular diaper rash ointment, then moved to Triple Paste, but nothing was helping. On Tuesday we talked with the doctor and got Resinol from the pharmacy in addition to starting Ethan on a probiotic. Today was Ethan's first non-diarrhea day since Friday, and the diaper rash still has a long way to go but...

Our family had the honor of meeting Ilan's family this past summer at the GFPD conference. If you live in or around Baltimore, MD and/or have friends and family who do, please share and/or consider participating! It is our hope that we will be able to plan a Pound the Pavement for PBD 5K Walk/Run event here in our area in 2014 to benefit the Global Foundation for Peroxisomal Disorders (GFPD), but we will need help to make this a reality.

We are just over a week into the New Year and so far it has been pretty uneventful. We have been spending time as a family and getting ready to get back to the “daily grind” following the holidays. We did have an exciting first on Monday -- Ethan pulled up to stand at the mirror in his bedroom for the first time! I of course didn't have the camera. Ethan also started back at school (STEPS) yesterday which also signaled the start back up of his therapies and the calendar is already filling up with doctor appointments as well.   I was ready for Ethan to start back up at school. Ethan was sick for the majority of November and December so between missing because of illness, appointments and breaks for Thanksgiving and Christmas, Ethan has had very little therapy for the last two months. Ethan generally tolerates therapy very well and we believe that he would not have, and we pray continue, to make such progress if it wasn’t for his amazing team of therapists (past and present). ...