Feeding that is.  That's right.  We re going to give this a go tomorrow.  I have a date with a charming 17 month old, a feeding pump and a glucose monitor.  For those of you who don't know what bolus feeding is - its delivering a larger amount of food (in Finley's case - Pediasure) over a shorter period of time with the actual goal being that Miss Finley might be able to have some "time off the pump" if you will.  We have been working up to this for some time.  Quite honestly, I don't know if she is ready - her blood sugar has definitely stabilized since her heart repair surgery in May - though with the uncertainty around the state of her reflux (its still bad) and the desire to get a new swallow study (which we haven't had yet) and quite honestly - a very nervous mommy and daddy - we have never tried it.  But alas, we feel like we are at the point where we feel like maybe being connected to the feeding tube 24/7 is holding her back a bit.  And as I sit here typing this, it just struck me how fast this day came.  I remember when we decided that the 24/7 continuous feed was the best course of treatment - we discussed that it would likely be a while before Finley moving around well.  And while she isn't able to get in to a sitting position on her own yet, and she's not crawling - girlfriend is on the go!  She is rolling all over the place - at the speed of light and her feeding tube extension just gets wound up tightly now to the point that several times a day we have to pause her pump, unwind the cord, and restart it...not to mention how many times she rolls away from the IV pole and pulls that cord very taut until we hurriedly move the pole closer.  This is made ever more interesting by Nate's paranoia around this - every time she rolls away from the pole, he's taken to rolling the IV stand closer and frantically calling for us - even when we are sitting right there!  Needless to say - its going to be a well orchestrated event - with everything timed out very specifically and unfortunately for Finley - frequent blood sugar testing - to the tune of every 15 minutes - while she is off the pump.  Our goal is going to be one hour on and two off - keep your fingers crossed for her!!

It was a busy week.  As though being the first week back to work weren't enough, its been a whirlwind of calls with doctors and appointment scheduling and significant developments (in my opinion).  In one of my last posts, I think I might have mentioned (and I am too lazy to go back to look so forgive me if this is all brand new to you) that Finley's speech therapist had suggested that the results of Finley's hearing test pointed to the fact that maybe we needed to pursue having a consultation about a cochlear implant.  In the interim, I received a call from Finley's ENT on Monday and he asked if I had received the results of Finley's ABR (hearing test).  I said I had and he asked me if I could relay the next steps that the audiologist had given - to him (he had a copy of the results in front of him).  I told him that the audiologist had indicated that if Finley's hearing were to get worse on the next ABR, that we should have a consultation with Dr. Nancy Young about the implant.  I told him how our therapist was working this angle already and he said that "he thinks that is wise" and that we shouldn't wait.  While this was disappointing to an extent - it really stung hearing those words straight out of the doctor's mouth - it was in a way good to hear those words - because if everything were to work out perfectly (meaning Finley was a good candidate and had a successful implant) - it wouldn't be long before our girl could hear clearly without any interference.  Something we have always hoped for.  Needless to say - getting the consultation scheduled was the hardest appointment I think I have ever scheduled.  Apparently Dr. Young is elusive - it seemed like every live person I reached didn't want to schedule the damn appointment.  After five solid days of calling, today I was finally able to get us scheduled for next Wednesday.  In addition to babysitting the bolus feeds this weekend, I am going to be doing some research about cochlear implants and the complications associated with implanting a child with CHARGE.  I am comforted by the knowledge that Dr. Young performs more cochlear implant procedures in the United States than any other surgeon.  More (hopefully exciting) news to come on that...

The Roth family rang in the new year at home, with Mike's parents and a rousing game of Candyland...Nate won of course!  We are all very excited about the upcoming year and hope that you are too!  Best wishes for much happiness, success and good health in 2011!