God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.
(2 Corinthians 1:3b-4, NLT)

Tuesday, April 20, 2010

We're walking again in June!

Faith and I will be spending a week in Boston in June. While there, we'll be seeing Dr. Rodriguez from the Motility Clinic, Dr. Puder, and the docs at the CAIR clinic. We'll celebrate my 26th birthday, and then we'll stay a couple of extra days, so that we can participate in the NSTAR Walk for CHB! Check out our page, and donate to help me meet my goal! (This walk has a minimum fundraising amount, so please consider donating!)
Children's Hospital Boston - NSTAR's Walk for Children's Hospital Boston 10 - 's Page
I am looking forward to a week in Boston, and hoping that June in Boston is actually summer... unlike July in Boston last year!

Thursday, April 15, 2010

What one year looks like

Thursday, April 15
One year ago, I took this picture of Faith and published it on the blog just for Papa:

Also on April 15, 2009:
  • Faith's bilirubin levels started to plummet! She went from a total bili of 10.8 and direct of 7.2 on April 9, 2009, to total bili of 7.1, and direct of 4.6!
  • Faith started breastfeeding, at 5 months old, after having only previously breastfed for about 2 weeks when she was 2 months old! She was allowed to breastfed four times a day, for as long as she wanted to.
  • Faith was hooked to TPN and Omegaven for 18 hours each day.
  • Faith's tube feeds were continuous, running at a rate of 16 ml/hr.

On April 15, 2010:
  • Faith's bilirubin levels (and all of her other blood tests) are completely NORMAL! She's not even slightly yellow anymore, and definitely nothing like that picture! It amazes me that I thought she looked so GOOD and pink there!
  • Faith is eating only by mouth during the day, and has started to figure out drinking, now that we've figured out what kind of cups to use for her! (the cheap take & toss cups with no valve- not spill-proof so the liquid just comes out when she tips the cup) Her favorite food so far seems to be butternut squash :)
  • Faith has been off ALL TPN for 8 months!
  • Faith's tube feeds run only at night; she gets one 500 ml bag, which runs at a rate of 65 ml/hr.

I can't believe an entire year has gone by, and I am continually amazed at how far this amazing little girl has come! I think God must have something huge in store for her!

Total site visits: