Sheriff Sarah

Sheriff Sarah

Tuesday, December 30, 2008

News from Monday's Appointment

I took Sarah to her appointment on Monday the 29th of December.  We started with the usual weigh in and measurements.  They pretty much check out every detail down to the "fat" test that makes sure she is coming along in her growth spurts.  When the nurse realized that Sarah has been struggling with a cold for about two weeks, she added a new duty to our daily regiment. She said that I should get used to checking her breathing daily and charting it in a notebook.  A normally healthy baby has 40-60 breaths in a minute.  That number should start decreasing as they get older.  Sarah is at 60 breaths per minute due to her enlarged belly.  So if she has a number greater than 75 or so, I should take her to the pediatrician.  

Dr. Murray is our study doctor who has kept tabs on her from the get go and she noticed Sarah's tummy right away.  She asked me how it looked and I told her I thought it had gotten bigger but was not too sure.  She agreed that it looked bigger and put her back on her twice a day dose of diueretic instead of once a day.  They did labs on Sarah and most of it looked better than the last time.  Her Alkoline numbers were up but the doctor said that due to her ongoing growth with bones that the number will be up some.  Also, that just having liver disease puts the numbers above normal.  Her GGT(a liver enzyme I believe) is high but better than last time.  As long as there is progress, we are good.  Her cholesterol was high but if her liver is not up to full speed yet, therefore not able to clean the fats and stuff out like normal.  All in all the doctor was very pleased with her labs.  She did say she would like to see Sarah again at the appointment with Dr. Healey on the eighth of January.  

So for now we are still praying for God to be glorified in every turn of Sarah's life.  She certainly is loved by her siblings and she definitely loves them back.  Just today Sarah had one on one time with each of her siblings and she sang and "talked" to each of them as if they were her favorite people in the whole world.  She is truly a blessing to each of us in the whole Kraft clan.  :o)  Patty

Saturday, December 27, 2008

Children's BARC Appointment this Monday

Sarah has her 2nd follow up appt with the BARC program this coming Monday at 11am.  This will include lab work so we are asking you to pray some more of her particular counts come down again this visit. This will show that the liver is continuing to make progress and function normally. BARC is a research effort to see if steroids have any effect upon biliary atresia. Europeans seems to swear by their positive impact but here in the states, there is some question as to to the effectiveness. We are also part of a group of patients who are being monitored to see if doctors can ultimately discover the reason biliary atresia occurs as this remains a mystery. 

Additionally, our follow up appt with Dr. Healey was rescheduled for January 8 and we are looking forward to speaking with him.

Thank you for your continued prayers and support.

Friday, December 26, 2008


Our little Sarah Ann, born September 10, 2008, was diagnosed with biliary atresia on November 15, 2008. Essentially, Sarah has no ducts to excrete bile from her liver resulting in damage to the organ. Fortunately, it was caught soon enough that the disease was not life-threatening. Dr. Patrick Healey performed the Kasai procedure on November 17 - this surgery ties the liver directly to the intestinal tract in order to aid in draining bile. We are grateful to the wonderful doctors and nurses at the Seattle Children's Hospital, including Dr. Chelsea Bottner (our ER doctor), Dr. Murray and Dr. Healey.

This blog will detail our further adventures through a life in B(iliary) A(tresia) land!

Sarah Ann