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.

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Flutter, flutter!


June 24th, 2010

Nora has been quite the little social butterfly lately. She’s been having more playdates recently and I think I’m enjoying seeing her play and interact with other kids just as much as she’s enjoying it. :)

The butterfly theme seems to be a running thing around here lately. After we enjoyed raising the caterpillars we got Nora for her birthday so much we decided to give it another try. We took Nora to a little local nursery to “adopt” a little caterpillar. Nora decided to dress up for the adventure in her appropriate butterfly attire. And of course Smiley the caterpillar joined along for the trip.

We took our cute little swallowtail caterpillar home, named it Spotty because of it’s yellow spotted markings. Then we watched it eat and poop a lot for a few days, it cocooned and we watched and waited for 2 weeks until one day Spotty emerged as a beautiful butterfly.

Nora couldn’t wait to teach Spotty how to fly. She grabbed her butterfly wings and said “I have to teach Spotty how to flutter!” Then she proceeded to dance around the room flapping her arms saying “flutter, flutter!”

Look at that proud little face! :)

Nora’s flying lesson resulted in Spotty getting lost in the house for a few hours. Apparently swallowtail butterflies are ready to full on fly a lot sooner after cocooning than the pink lady butterflies we had. Although I worried a bit until we found her, Spotty’s extra stay in the house before getting released turned out to be a saving grace since the bug man came to spray outside that afternoon. It’s nice when unpredictable occurrences seem to happen for a reason. :)

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Memorial Day Fun


May 31st, 2010

On Memorial Day Nora discovered how fun sparklers are. :)

Fireworks are fun too but a little loud.

Last year the fireworks were too loud for Nora and scared her. But this year she realized all she needed to do was cover her ears and enjoy the visual show. We only had a few fireworks on Memorial Day and she wanted more. So for the 4th of July we will have to do it up big time. :)

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First trip to the dentist


May 24th, 2010

We attempted to take Nora to her first dentist appointment recently for a general check up and cleaning. She was all geared up and excited to go, fine and happy in the waiting room enjoying watching the other kids run around. She was just a tad nervous when she went back…and then the hygienist put on gloves and a mask to clean her teeth and then…….things went down hill quickly, very quickly. Poor Nora had such extreme anxiety and got very upset, she clung to me with all her might as if she was trying to melt into me to hide.

The only experience Nora has had with people wearing a mask and gloves is when her port is going to be messed with which makes her very nervous. I can’t believe that neither I or Montana didn’t think about this situation before her appointment and talk to her about it. I was kicking myself in the butt big time for not making this connection ahead of time. The hygienist was very understanding and didn’t try to pressure us to stay. The dentist on the other hand wasn’t rude but let me know he thought it was important for Nora to tough it out. I politely let him know that we have had to force Nora to do many unpleasant things for medical necessity in her life and a teeth cleaning was not going to be one of them. So we ended the appointment very quickly and will try again in a few months.

By the time we left Nora was smiling and even shook the hygienist’s hand and promised to let her clean her teeth next time. Since this experience we have had many talks with Nora about all the different reasons people wear masks and gloves besides to mess with her port.

Life is one big learning experience for all of us.

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Trip to the Beach


May 17th, 2010

Our trip to the beach was great. It was just the relaxing distraction we needed from the everyday hustle and bustle. I wish we could live in day dream beach land forever. I loved seeing how the work stress just melted away from Montana’s face as soon as we arrived. He works such long hard hours to support our family. I am so very thankful for his devotion and giving our family the opportunity for me to stay at home with Nora to give her the undivided care and attention she needs.

A good sword fight is always a good stress buster. :)

Nora had a great time but it seems that the idea of the beach is much more appealing to her than the actual beach. Sand between your toes, big waves and the heat can be a little much for such a little girl. She only liked  being down on the water for short spurts at a time. Even though it made for more work trudging back and forth to the beach house so often it was actually just what Nora needed to do to not get overheated and stay hydrated. Short bowel causes enough hydration issues in itself and you add excessive heat to the equation and things can go bad fast.

This was Nora checking out a fellow toddler and his baby brother down the beach. She found them very intriguing and insisted we walked down for a friendly hello.

Nora the wind warrior! I think Nora’s favorite thing about the beach is that the wind is always up for good kite flying. And playing in the kite tales on the deck makes for a lot of fun too. :)

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A Butterfly Emerging


May 13th, 2010

For Nora’s birthday we got her a butterfly hatching kit. The baby caterpillars arrived the week before her birthday and they all cocooned on Nora’s birthday, what a great day to start their transformation. :) The butterflies emerged from their cocoons a week later and we let them free.

The whole process was really neat to watch and it couldn’t help but make me think of Nora’s journey. Our little butterfly is finally emerging too. We’ve kept her close and safe for three years and now it’s time to let her grow more freely. Our trip to Kentucky was really a big milestone in getting Nora out in the world. It gave us confidence that our little girl is now strong and healthy enough to handle bigger experiences and not get set back from it.

Nora is one happy, silly butterfly.

We are beach bound for the weekend to enjoy it while we can. With the uncertainty of what will happen to our beaches from the non-stop oil leak pouring out into the gulf it’s hard not to feel like the clock is ticking. We haven’t been to the beach since last summer and this will be only Nora’s second time to St. George so we are really looking forward to the weekend. :)

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Mother’s Day


May 9th, 2010

Candies, flowers and cards are nice

But the most treasured gift of all is the gift of your life

I will forever be thankful that you are here

I will forever honor being your mother, year after year

I love you Nora.

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