Archive for July, 2010

“I love my new friends!”

July 21st, 2010

That’s what Nora has been saying a lot recently since she’s been having so much fun playing with her pals Maya and Rachel. Nora has been making up for lost time socializing and is loving every minute of it. Between frequent playdates with her new best buds, attending her first birthday party for another child and meeting a new friend this weekend she’s keeping her calendar full of fun. :)

For Nora’s cousins Lucas and Olivia’s birthday party, we brought Nora-safe equivalents to the cupcakes and ice cream they were serving. And Nora’s mango coconut milk ice cream on a gluten free cone turned out to be quite the hit! Mama Tom was excited that she now has a yummy ice cream she can eat with her diverticulitis and the kids just thought it was plain ol’ yummy. Nora had a great time and so did we. It was perfect that Nora’s first attendance at a kid’s bday party besides her own was at her great-grandmother’s house.

The birthday boy called Nora over to him and said he needed to “tell Nora’s something”. He made her wait for it and she was listening very intently for something important.

Nora started to get suspicious…..look at this face….she’s starting to catch on…..what’s this boy going to say..

In typical Lucas fashion he delivered a very important funny face message, I think it was worth the wait. :)

This weekend Nora and I met up with my friend Susan and her nephew at the museum of arts and science. It’s a great hands on place for kids to learn and play. (germaphobe alert)

John Corbin is about 6 months older than Nora, they got along good and made very sweet playmates. :)

Nora had a great time at the museum and I had a great time watching her be just one of the kids. But it was definitely a good dose of exposure therapy for me. It was by far the most germ friendly environment Nora had ever been in before, so many kids, so many touchable surfaces. I tried not to be too crazed wiping Nora’s hands down but she kept rubbing her nose all the while having a wonderful time playing with all of the toys. Then in typical 3 year old fashion Nora licks one of the play plastic foods just as I’m telling Susan how I’m seeing things through my germ goggles. (ahh!) Oh well, she had a great time and this experience was long overdue and she deserved the pure joy of it. (and hopefully she escaped cootie free)

(for those of you who’s eye caught the little girl with the backpack and were wondering, it’s just a backpack. in our experience seeing such a little girl with such a big backpack usually means there’s pump in it but not this time, I was nosey and investigated)


An unhappy liver

July 9th, 2010

I think I mentioned in a previous post that Nora’s liver enzymes had been a bit elevated since the beginning of the year. We changed a few things and had hoped they would return to normal but the opposite has happened and now her AST and ALT are more elevated than they have been in a very long time. There are numerous things that can aggravate the liver but in Nora’s case the obvious reason would be long term TPN use even though she’s also on Omegaven. Maybe I’m just being stubborn but I just can’t help but feel there’s another piece to the puzzle, just because she’s on such a low dose of TPN at this point. But even on a low dose, TPN does have an accumulative effect.

What makes this elevation even more puzzling is that Nora’s Omegaven dose was increased a couple of months ago, so in theory, more Omegaven should have helped these numbers drop. But with Nora’s fat malabsorption challenges maybe the increase was too much for her liver to handle. Although the Omegaven is going straight into her blood stream and not through the intestines, could these elevations be due to a fatty liver? Who knows, I feel like I’m talking/thinking in circles. I’ll I know is that I do not like seeing these numbers continue to rise.

But ultimately this just reconfirms the need for us to try getting Nora off TPN all together again soon. At Nora’s last GI appointment the plan was to try a TPN break in the fall hoping that by then her weight will have picked back up again. Which it’s finally starting to slowly pick back up. :)

We took Nora to see Dr. Min Tian, our accupuncturist who practices traditional Chinese medicine, to get her opinion of what may be going on. Dr. Tian has played a big role in Nora’s care since the beginning and she has been a huge help with Nora’s diet. She provides a  good balance with her knowledge of the bodies’ natural rhythm and the the necessity of Nora’s extreme medical care. She thinks that there is too much fat build up in Nora’s liver, either from the higher Omegaven dose, from her diet, or both. So she recommended we do a natural liver flush with fresh melon juices. So we raided the health food store and bought every kind of organic melons they had and Nora gets to enjoy a fresh cup of juice twice a day.

Dr. Tian has proven to be right on the money in the past with her diagnosis before the medical testing results have come in. But regardless of the reason for Nora’s elevated liver numbers, we think she can benefit from a cleansing. I’ll be sure to share the outcome of the liver flush with fresh juices.


© 2010-2017