Patience is a virtue as they say and that couldn't be more true around here.  Our big plans for bolus feeds two weeks ago got interrupted by a brief bout with the flu.  The day of my last post - the day we were going to try bolus feeds - Finley wound up vomiting all day and thus instead of bolus feeds had a nice apple juice and Pedialyte cocktail instead.  She bounced back well and was back to herself the following Sunday but when we were going to try the bolus feeds the next day - her blood sugar was running a little low from being on the apple juice/Pedialyte for more than 24 hours so we decided to delay things.  That said - this past Saturday turned out to be the big day - we ran Finley's feed over the course of an hour and then gave her an hour off the pump and...SHE DID AWESOME!.  The only thing was - she didn't realize that she was off the pump when she was (perhaps because she was annoyed with me sticking her every 15 minutes) but I think that she will enjoy it as we do it more and more.  It felt like a huge victory for us though and I really can't wait until we can work her up to a longer period off - like 2 hours - that will really make a difference for her.  I've also been reading more and more about Blenderized Feedings - this is the concept of blending up a mixture of fresh foods to create a nutritious mixture of fresh foods that can be pushed through the g-tube in lieu of the Pediasure she gets now.  When she was on breast milk and formula I felt a lot more comfortable with that being her main source of nutrition but the Pediasure is just loaded with corn syrup and its not something I want her to be on long term.  My ultimate goal is to replace as much of the formula with fresh foods through her g-tube and orally as we can and use the formula minimally.  I've joined a Blenderized Feeding forum on Yahoo (who knew right?) and and reading more and more.  Our particular problem is her blood sugar and making sure that whatever nutritious blends we create have the appropriate amount of carbs in them to keep her blood sugar up.  I am going to be meeting with a dietitian from Children's in February (its the appointment that took 4 months to get in to!) and I am hoping that we can start her on a plan.  In the meantime, I think I might just try doing some of the calculating on my own and try a test run with something simple.  More to come on this....

Also - you will see throughout this post that I've included a boat load of pictures - I was too lazy to upload any for my last post and had a lot  of good ones to share - ENJOY!

In just two shorts weeks (well 13 days but who is counting) - my friend Gina and I are participating in the Kohl's Step Up for Kids.  We are going to be climbing 80 flights of stairs at the Aon Center in this event that benefits Children's Memorial Hospital.  Gina and I participated in this event MANY years ago - when I was pre-kids and in way better shape - but it was a lot of fun!  Clearly, these days my reasons for participating are much different - while the physical activity part of it is important - the most important aspect of this year's climb is doing it for the hospital that took such great care of our princess and has made it possible for her to someday climb 80 flights of stairs (if she so chooses).  That said, please check out my personal fundraising page: http://tinyurl.com/2czx94a - I am in desperate need of a little support - $5, whatever.  Every little bit makes a difference.


Which brings me to the next thing I want to say.  This past Thursday I had to go to Richmond, VA for the day for a client meeting.  I got home around 8:30 pm and was in the kitchen opening mail.  Much to my surprise was a letter from Gina's (my fellow stair climber in crime) Aunt Ann.  First of all - let me say that it was a handwritten letter - who doesn't LOVE a handwritten letter?  I always feel so privileged to get a handwritten letter, thank you, etc because it means a lot to me that someone would take time to do that for me.  So not only was this letter unexpected, but it was so sweet (she reads my blog) and it included a donation for the Step up for Kids!  Not only was the letter unexpected but the donation was even more so - it was all so thoughtful and kind and - Ann - I just can't thank you enough!! 







Overall, the week was definitely eventful - aside from doing bolus feeds over the weekend - Finley had her cochlear implant consultation on Wednesday.  While we liked the doctor, we had been warned that she wasn't the warm and fuzzy type (and she definitely wasn't) and the appointment was what I would characterize as slightly uneventful.  We spent much of the appointment talking about Finley's medical history and her CHARGE diagnosis - and one slight pet peeve I have is the doctor's who seem to know nothing about my child when I walk in the door - in spite of having ALL of Finley's medical records in the computer that is sitting in front of them!  It would seem to me that the purpose of e-medical records is to make the access to that information easy and readily available, but I digress...What we learned what that this would be a bit of a process and there are a lot of things that will need to take place before it is determined that Finley is or isn't a candidate for an implant.  Fortunately, we have a lot of that data already since she just had an ABR (hearing test) and she has had a CT scan of her temporal bones and we have great therapists that Dr. Young knows (one of which has a daughter that has two cochlear implants and is a patient of Dr. Young's!).  So Dr. Young explained some things to us - like about how ultimately they could decide to implant Finley's good ear (the right) instead of the bad one (the left) because it might be more beneficial to do the good ear and the result might be better.  We are going to begin with seeing one of the Children's implant audiologists who is going to give us a set of loaner hearing aids that are stronger than the ones Finley has and we are going to see if there is a noticeable difference in how Finley responds and interacts.  She will also need an MRI at some point so the doctor can look at her cranial nerves, the structure of her head, etc.  Our therapist told us that the process from start to implantation normally takes around 7-8 months.  Geesh!  Perhaps the most bizarre thing about the appointment, aside from it being less informative than we were hoping, is that at the end of the appointment (although we didn't realize it was the end) the doctor just got up and walked out - without talking about next steps, saying goodbye, etc.  We thought maybe she was stepping out for a minute - but I called to her as she was walking away and I said,  "um....so...What are our our next steps?" To which she replied, "Someone from my office will call you."  And then it was over.  Just like that.  Weird huh?  So, I am hoping and praying that someone actually does call this week so this doesn't wind up being yet another doctor that I need to follow up with!

This one is a particular favorite - Finley rolled completely off her lily pad and was UNDER the Christmas tree!

Off the pad again - we can't keep her on it!

Nate before going out to play in the snow.  He did eventually put some clothes on too.

Finley was wearing this hat to try to block her from looking up at the light during her vision therapy - GO SOX!

This hat wasn't as effective (Nate wanted her to try this one) because the underside of the bill was green - and so all Finley wanted to do was look at it!

This is Finley pre-bath - rolling around naked in her crib - she definitely takes after her brother - she LOVES to be naked!

We have a busy week ahead - endocrine on Wednesday and our first gastro appointment on Thursday.  I hope you all have a great week!