Wednesday, December 19, 2007

Hello! finally a moment to leave a note. We are doing well, Abram is over a cold and constant diarrhea so mama and dad are getting better rest. He had his first Christmas with our good friends, the Durans, last night and seemed to be worn out today from it all. He received a ton of toys and the cutest outfits! He had a great time and seemed to be in the Christmas spirit! We continue to visit doctors about once a week. Abe's liver is slightly enlarged and the docs are trying to find out why. Nothing real obvious. He had a swallow study and we learned that Abram aspirates thin liquids so he is not on the bottle right now, but taking in bites of babyfood and pureed food that is thickened. Friday we will attend an occupational therapy consult which will hopefully teach us how to feed abram his formula. We were making some progress with oral feedings, slow, but progress - until we learned he was aspirating and had to stop, hopefully only temporarily. We are so busy keeping the house spic and span for showings as we look for ranch style home for Abram to live in as we expect stairs will tire him easily, and since I can't return to work we need to downsize a bit. Sad that we have to leave our first house where we have so many memories, and the comfort of knowing only we have lived here so we know what germs are here! But we will take these memories, and clorox wipes, to the next house and make it our home. That's all for now. Love to all, Erin

Thursday, November 29, 2007


Great News

On our wayto the doctor for immunizations, so not a lot of time to write. But, wanted to pass along that Abram had an echo of his heart yesterday and the ejection fraction is 59%! Normal is 60=75%, we are exstatic with this news. The medications are working and he will probably have to be on the forever, but we are thankful they are working! More later. . .

Thursday, November 15, 2007

Hello! I am having a hard time finding the time to blog about Abram so am going to try something new. I will perioodically, hopefully a couple times a month, send out updates on Abram with pictures. I may still use the blog, but again, it's hard to find the time to log in and talk. Please send me your email address if I don't already have it at Thanks!

Saturday, November 3, 2007

Abram had another appt with the GI yesterday who is making referrals to the endocrinologist to help find out if Abram has hypoglycemia, something commonly found in boys with Barth's. We need to know before tapering down feeds at night, and prior to any surgeries for fasting reasons. We are looking at Abram possibly getting a Mic-key, as I might have mentioned in the previous blog. We are also scheduled to see a urologist and have an ultrasound of Abe's kidneys and bladder. There is a possibility that Abram has kidney or bladder stones or sediment. Not much otherwise. We are looking forward to our first real trip back to Fort Dodge for Thanksgiving, keep your fingers crossed everyone back in Iowa is healthy for our return!

Tuesday, October 30, 2007