My favorite things to do:

....pinching my mom's arm, tearing up the baseboards with my walker, fighting my mom during trach care, sitting up scooting on my but going in circles, round and round, and round, getting hyper over my siblings, ( they are so much fun and I cant wait to see them in the mornings!) blowing and giving kisses, pulling on trach ( I actually pulled it out once and threw it across my crib while my mom was changing it, Im getting fast! ;p) waving bye bye, yanking daddy's beard, and playing with my fisher price mailbox on my play mat! ( btw, my mom loves every bit of this except the trach part =p)

Why arent we gaining this week??? That is the question of the day. =( I just weighed him and he actually lost an ounce this week(now at 18.8) and we have been fortifying all the milk. Guess we'll have to add more. I cant believe how hard it is for him to gain and all the extra calories he has to burn. So, Im going to start adding another tsp to everything, because he is already getting enough liquid.

With the new year I have decided to get super aggressive with the bottle feeding and it is going better than I thought it would. At first I was debating on the bottle, but he tolerates a small nipple over a sippy cup nipple. If he eventually gets good with a bottle and gets over some of this aversion it may be an easy change to a sippy cup down the road. He isnt getting much down, maybe a few mls, but he isnt gagging and is sucking on and off. It is a huge chore and takes time and patience....but every time I just pray that will be the time were I can actually "see" the milk in the bottle slowly going down. He fights a bit, but he isn't crying and will actually play with it at times. I am making it extra thick with cereal so it isnt so runny, dripping straight back to his throat.

I am still pumping but with him turning a year old soon, I am thinking of stopping in the next month or so. I want him to get breast milk as long as possible. It is also a bit emotional for me. I have known he wasn't going to breast feed ( or even bottle feed ) for a long time with his awful oral aversion, but it is really "over" if that makes sense. I havent had my hopes up and I accepted it( as much as you can try to ) months ago, but as I pump less and as he approaches a year old I am sad yet ecstatic. Sad because I feel like I missed so much of the "normal" things with him, but overjoyed that he made it to a year and that I was able to experience Camden's "normal"!!!

My nursing situation is this for now: Every night from 11p-7a and then Wednesdays, Fridays, and Saturdays 8a-4p. I have told them to not send any new DAY nurses and have kept one of my original day nurses who we all love. She knows Camden's needs, Camden loves her, and I dont feel comfortable starting with new people at this point. He just hangs with us all day on nurseless days. The kids love it. That way when Norma does come in I can get a bit more accomplished and know he is being watched. Most importantly she loves Jesus =)
They BAD news is that medicaid is stinking right now. =s Camden has medicaid back up for whatever my private insurance wont pay for and they only paid for one month of nursing, so thankfully medicaid kicked in for the rest. Well, now they say that they are starting to cut my nursing hrs back to practically nothing in a few months.( they even said 2 hrs a day... really? Do they honestly think a nurse will come out for that short of time? ) Well, if he still has a trach that just cant happen, so I'll have to fight that. It just boils down to people working in an office not knowing what a trach is, clueless in the medical field, and people who have never had a special needs child. =( You need an eye on a trach baby. So, hopefully things will work out to where I will have at least 8 hours of night nursing so I can sleep. God will work it out....he always does.
So sorry to vent about this, but I haven't posted about the nursing situation in a while, so I thought Id give an update =)

We go see the ENT next week to get a trach update, and to the pulm. That is it so far, but I am thinking we will be due for a nutritionist visit too.