July 27th, 2008
The last two weeks have been full of good times. Nora got a swing set last week and has been loving her daily morning swings before it gets too hot outside.
And yes that is a fallen tree you see in the background. It fell a few months ago during a storm and we haven’t gotten a chainsaw yet to cut it up and haul it off. But it makes a nice bench for now.
We’ve been house sitting for a friend and Nora now has a new best buddy, Mr. Gray the cat. She looks forward to our daily visits to go feed him and gets quite excited that he lets her pet him while he’s eating. When we say his name she immediately starts meowing and heading towards the door. Here she is signing the word “eat” in case you weren’t sure what he was doing.
There have been a couple of little bumps in the road amidst all the fun but thankfully they have been minor. Nora’s liver enzymes (AST & ALT) were elevated quite a bit last week so she went back on Actigall. She had been on Actigall up until she went off TPN in April and it had always kept her liver enzymes under control so we are hoping to see an improvement in next weeks labs.
Nora had a rough week of teething last week so we all didn’t get much sleep since they bother her the most at night. But thankfully the high PH output that always seems to come along with her teething only lasted a few days, but it still caused her to lose a little bit of weight. It is so strong it burns her little tushy on contact. Nora has never been prone to diaper rash but even though we were changing her right away she got a bad diaper rash. As a result of it she learned a new word, “itch”.
On the subject of Nora’s output her poo has made a tremendous improvement over the last week. Her poops started thickening quite a bit last week and took on a very pungent odor even though we hadn’t made any significant changes in her diet. (Sorry to get poo graphic so if you don’t like reading about it I’d suggest to skip to the next paragraph.) They never smelled great to start with but oh my god, the thicker they got the stinkier they got! I have handled a many yucky poos since Nora has been born without batting an eye but this was almost too much for the “poop inspector” to handle as Montana has so lovingly nicknamed me. Since the consistency is so good we think that it’s just her system changing and developing along with a more varied diet but we did a stool culture just to make sure the new odor isn’t from overgrowth and should get the results early next week. In conclusion to the new poo story, we started giving Nora goat’s milk yogurt a few days ago and since then her poo went from great to beyond believable fantastic. I opened her diaper yesterday to find a well formed piece of poo! Not a blob of mush or a puddle of liquid but actual individual pieces of stool! I know I have said this before but never in my life did I ever think that #1) I would ever talk so much about poo and #2) would ever get so excited about it. It’s crazy how a such vile substance can make your day when you are a parent to a child with short bowel syndrome.
Now back to non-poo Nora stuff………
Nora has been on TPN for 12hrs during the night and off during the day for the past two weeks and has been doing great with it. She’s still a very good girl with her lines when she’s on but she certainly knows when it’s time to come off and is happy to have the day to run around line free. The coiled IV tubing came in and has made when she’s hooked up so much easier to handle, especially during the night. She hardly ever gets tangled in the line anymore. I would highly recommend it to anyone on IV’s.
Blowing bubbles with NeeNee is lots of fun!
So is playing with the maracas at Grammy and Pappy’s house!
Wow-wee I’m cute!
and oh-so sweet……….
We’ve added a few new videos of Nora if you would like to see little missy in action. They’re in the Nora Videos section from the Blog Categories menu.