Juliana said Ma Ma. Maybe not to me but she did say it and will repeat it as long as you don't ask. She is babbling so much more now and is definitely working on her two year old behaviors. She enjoys pulling all the pots and pans out of the cabinet and then stacking and unstacking them over and over again. She is crawling up the stairs to go to bed now. She can make it all the way up the full flight and down the hall to her room without help (just a little coaching).
Unfortunately our clinic visit to Boston didn't go so well. Juliana lost weight for the first time since she's been home. It was rather disappointing but considering we dropped a night a TPN and she is extremely active during the day it's not completely without reason. Fortunately the docs at CHB are so awesome they are letting us keep our night off and adjusting the calories on her TPN for the other 6 nights to make up for it. I was really surprised that they would actually ask me how I liked having the night off. It is real nice to have a break especially if I am running late getting home from the grocery store or where ever. I can come in and just hook up a bag of hydration fluid. This is why we tend to leave hydration night for Friday or Saturday when I know it's more likely for us to get home late.
We are also getting ready for Oley. I can't wait to meet other families and learn more about managing Juliana's care. Our pharmacy was so helpful in making sure that we had more than enough supplies to get us through. We have an stationary oxygen tank being delivered to the hotel and a couple of extra bags of TPN were sent with our order today in case we have an issue with one while we are away. It's nice to have a pharmacy that thinks of what you need before you even need to ask. There are some people in the company who will give us a hard time but for the most part they have been good to us.
We have another quite month ahead of us filled with only our regular therapies and a couple of doctor visits. It's nice not to have to do all the crazy running around.
Wow, how exciting. Ma Ma. That's awesome. K&C are on 1/2 lt of oxygen. It really isn't much at all. It won't be long and she'll be off the oxygen. I can't wait until she gets her surgery. I can't believe 1/2 lt of oxygen is holding her up. That's not much at all.
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