Archive for April, 2009

Nora’s 2nd Birthday!


April 28th, 2009

Click to play this Smilebox scrapbook: Nora's 2nd Birthday
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If you cannot view the scrapbook slide show here are some pictures from Nora’s birthday:

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Happy Birthday Nora!!!


April 27th, 2009

Hip, hip, hooray…..today is Nora’s 2nd birthday!

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Even though we are only having a small gathering this afternoon with Nora’s grandparents it certainly doesn’t mean that the celebration of Nora’s special day is small. I’ll post more pictures later today but just wanted to put up a quick post in recognition of our amazing, wonderful Super Nora.

WE LOVE YOU NORA!!! HAPPY BIRTHDAY SWEET GIRL!

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Food Allergies


April 25th, 2009

We had Nora tested for food allergies a couple of months ago and it has really helped with figuring out what foods may work best for her. With short bowel syndrome her diet is still a bit tricky because just because she’s not allergic to something it doesn’t mean that her tummy will agree with it. Like cow’s milk for example, she’s not allergic to it but it’s too hard for her system to process without getting a bad tummy ache. The fat globules in cow’s milk are much larger and harder to digest than the fat globules in goat’s milk which she tolerates very well. But knowing what she is allergic to gives us more confidence when trying new foods with her and more importantly helps prevent Nora from suffering through an allergic reaction.

An allergic reaction to wheat pasta is what sparked the idea to have her tested.  Her reaction to the wheat pasta was pretty severe, she only ate a very small amount but within minutes after the first bite her upper lip was red and within an hour her entire face swelled and she became very flushed as well as having the typical sinus allergic reaction. Her eyes swelled so quickly that one almost swelled shut before we gave her a dose of Benadryl. Thankfully the reaction did not effect her breathing and her other symptoms were gone after 24 hours. Here is a picture of poor puffy face that I took as a reference to make sure she didn’t get worse that day.

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Sure enough her allergy test came back showing a high reaction to wheat gluten. That one was expected but there were a few that were surprising, like cucumber. Who would have ever thought that something that is mostly water would be so allergic to some people?

Here are Nora’s test results which shows all of the foods that she was tested for and how severe her reactions were to them.

click here – allergyjpg.pdf

Instead of the traditional skin scrape allergy test we had Nora tested by an allergy blood test. We were really excited to learn of this kind of allergy test when Nora’s pediatrician suggested it so we wouldn’t have to put her through the unpleasantness of the traditional allergy test. Our insurance didn’t cover the blood test so we did have to pay for it out of pocket but we thought it was well worth it.

Even before knowing Nora was allergic to wheat we always used rice as her main source of carbohydrates for two reasons, 1) people with short bowel syndrome commonly react negatively to gluten and 2) wheat products have a tendency to grow mold easily (even if it doesn’t smell or look moldy). Pretty much any product that can be made from wheat flour can also be made from rice flour. So Nora will be having a rice flour cake for her birthday. Since she has never had any type of cake before I wanted to make sure she would do ok with it before giving it to her for the first time on her birthday. Here is a little clip of Nora’s first experience with eating cake last week. She has been asking for more birthday cake ever since. :)

http://www.youtube.com/watch?v=tu_2yEVqMF4

It’s hard to believe that our baby Nora will be 2 years old in just 2 days. I guess we can’t really call her baby Nora anymore….well maybe I can, she’ll always be my baby. :) If this shot taken the other day doesn’t show what a big girl she is I don’t know what does.

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Nora’s 2nd Easter


April 17th, 2009

Nora says….Happy belated Easter Everyone!

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This Easter Nora was old enough to really get the concept of egg hunting but thankfully not old enough to realize that there is usually candy inside them so she just enjoyed the pure fun of running around outside finding eggs.

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Easter fell on Montana’s birthday this year so the day was extra special. Nora happily shared her egg findings with her Daddy. There has been a lot of birthday talk lately around our house with Nora’s 2nd birthday coming up at the end of the month. (10 days from today to be exact ) :) Nora was very attentive to the birthday activities and she is definitely getting excited about her big day.

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After hunting eggs at Mammie and Pappy’s, Bunny Nora was off to NeeNee and Papaw’s for a second round of Easter fun casual style.

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Mommy sure loves her Bunny Nora! :)

(and don’t worry, Nora’s not eating a nandina berry, that’s just her “humm, I’m thinking” pose)

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Drum roll please!


April 5th, 2009

And Nora’s small intestine has grown to………… 16cm!!
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The initial amount of 4.5cm she started off with has more than tripled in length in 23 months. This is an “approximate” measurement since it was measured from x-ray film but this is the most accurate measurement that can be taken without actually opening her up and putting a ruler up to her intestines. We are just so excited to have even an approximate measurement because up until we switched Nora’s GI doctors we had always been told that there was no way to know how much her small intestine had grown without surgery. (which always sounded a bit questionable to us)

Nora’s abdominal and liver ultrasound showed “no acute findings”. We just have the basic information from her radiology reports at the moment since we haven’t haven’t spoken to her GI doctors yet. Hopefully we’ll get to hear the short bowel team’s insight and interpretation on her transit time and the sloshing action that was seen in her small intestine before Nora’s next clinic appointment at the beginning of May.

Nora’s plasma citrulline level was supposed to have been checked with her last set of labs but the lab messed up and checked her cyclic citrulline level instead. Plasma citrulline levels give an indication of nutrient absorption through the intestine and cyclic citrulline level checks for RA (rheumatoid arthritis). So we’ll have to wait for her next round of labs in a couple of weeks to get an idea of how well her intestinal absorption is but at least we know she’s negative for rheumatoid arthritis. :)

Nora continued to feel pretty miserable all last week with sneezing, coughing and a runny nose.  So Friday we took her to see Min Tian, our Chinese acupuncturist who has been helping us with Nora since she was a tiny baby. Min thought that Nora was now dealing with a bad case of allergies and gave her some herbal and homeopathic remedies that have seemed to really help her in the past few days.

Even with still feeling a bit puny this week Nora is always up for some fun. Here are a couple videos of her riding her pony and dancing from this past week. She’s a bit hard to understand in the first one with her scratchy, horse voice but she is saying that her horsey needs batteries because she has about run them out with insisting that the song be played when she’s riding him.

http://www.youtube.com/watch?v=lhf88Ma_nqU
http://www.youtube.com/watch?v=y8k7PMO98Og

Nora did end up loosing about a half a pound since she got sick but thankfully her appetite seems to be picking back up. This weeks Omegaven shipment being held up in customs and Nora not having it for the past few nights isn’t helping her weight situation but I’m sure our Super Nora will gain it back soon.

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