Archive for August, 2008

Big Girl Nora


August 30th, 2008

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Nora has been doing very well for the past few weeks. She’s growing up into such a big girl so fast, mentally and physically. She keeps us on our toes running after her all around the house and is constantly amazing us with her growing vocabulary. She’s gained almost a pound in the last month and her labs have been reflecting a very happy body.

Nora is picking up new words all the time and has started saying three word sentences. She says “I did it!” and “In a minute.” I never realized how much I say “in a minute” until she started saying it. The newest word she is saying is octopus which she very cutely pronounces “acapuss”.

Nora is certainly a girly girl. She loves shoes and hats, and pretty much anything that can be put on her head and called a hat. :) Here is a little video of her pretending that the top to her toy cookie jar is a hat.

http://www.youtube.com/watch?v=EUKuZMU0t1o

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Nora loves playing with her dresses and clothes. Here she is donning her fancy dress from New York that was a very sweet gift from a dear friend. It’s still a bit big but darn cute anyways. :)

Nora’s digestion has been on track lately and she has enjoyed trying new things. Since she tolerated the goat’s milk yogurt so well we decided to give her some goat’s milk by adding a tiny bit to her bottles at first. Now she’s able to tolerate enough goat’s milk to enjoy a small bowl of cereal when we mix it with her rice puffs. We’ve also added jarred baby food apples and pears to her diet but only in very small amounts and just once or twice a week (as they do seem to make her stools more loose) but it’s nice to be able to give her a little sweet treat now and then.

We started potty training with Nora a few weeks ago after we realized that not only can she tell us before she has to go but she can also hold it in when she’s not in her comfort zone to make poo. Which with short bowel is very surprising. We don’t want her to hold it in as it ends up whacking out her system and giving her diarrhea but we were amazed to see that she has such control of her bowels. When we first brought out the potty she didn’t want to sit on it and only wanted to bang on the lid like a drum. But she’s been warming up to it over the past week and sitting on it bare bottom for short spurts. Then late last night she she woke up with a loud tummy which usually preceeds a poo so I thought we’d give the potty a try while we waited and she made one tiny drop of poo in the potty! We kept her on it as long as we could by letting her play with the toilet paper roll but then she was ready to get up and finished the job in her diaper. We were very proud of our big girl and had a potty party at 12:45am! :)

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Omegaven…….the fish oil that saved our little girl!


August 15th, 2008

Happy Omegaven Anniversary! Nora received her first dose of Omegaven one year ago today. (click here for original post) Omegaven saved Nora’s liver and allowed her to have the best chance possible to grow strong and healthy. I’d say it’s a success!

It’s scary to think where Nora might be without it. Her doctors thought her only chance would be to have a liver and/or short bowel transplant. Nora was 3 1/2 months old when she started on Omegaven, she was very jaundice and her direct bilirubin was 5.5 and total bilirubin was 9.3. After a short spike up to 10.7 (as expected while flushing out the jaundice) Noras’s total bili was down to 1.0 after only 2 1/2 months and down to 0.3 after 3 months where it has stayed since. Nora went from a very sickly yellow/green color to a healthy pink! Here are some before and after pictures. You can see that even the whites of her eyes were yellow.

Before Omegaven, July-August 2007
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After Omegaven, October-November 2007
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……now we’re two pasty pale peas in a pod! :)

Before Nora started Omegaven we weren’t really sure what her natural skin color looked like. Her coloring wasn’t good from the start from being so sick and then she quickly became jaundice. Montana has olive tone in his skin so for a while we thought Nora did too. But once the jaundice was gone turns out she’s as fair skinned as me. Not that it matters who’s skin tone she ended up with it was just very nice to see our babies healthy skin color jaundice free!

We were so fortunate to have gotten approval for Omeagven here in Tallahassee. We were all ready to head up to Boston to join the trial study but thankfully we got approval from the FDA and our insurance company agreed to cover it. It was a struggle to get it here but definitely a battle worth fighting for. We feel certain that having the opportunity for Nora to stay at home surrounded by family and those who her love her made a big impact on her success in getting healthy and strong.

Omegaven is a wonderful gift from nature….fish oil. It has saved many babies lives and the numbers are growing thanks to Dr. Puder! It was created by German doctors and used for it’s anti-inflammatory properties in post-op and cancer patients, then Dr. Puder discovered it’s amazing counter effects to liver damage caused by TPN. It’s crazy that such a natural medication is still not approved by the U.S. FDA. Hopefully Omegaven will be easily attainable by anyone needing it one day very soon.

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Hello Ducks!


August 11th, 2008

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We took Nora to see her duckie friends at Lake Ella over the weekend. Anyone who knows Nora knows that she absolutely LOVES ducks. It had been way too long since our last trip to the lake. As soon as we told her where we were going she grabbed her pink rubber duckie and was ready to go. Right when we got there she headed straight for the closest group of ducks, waving at them and laughing it up.

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She would have followed them right into the water had Montana not been holding her hand.

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Wouldn’t you want to cuddle with these cute little baby chicks too? :)

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She had only been walking for a few weeks the last time we took her but this time she was running all around chasing after them full speed ahead!

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Here are a couple little video clips of Nora with the ducks.

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

http://www.youtube.com/watch?v=Exblj_8CTho

Nora was a very happy girl this weekend and was feeling much better after having an upset tummy for the last two weeks. Her nice thick poopies turned to frequent liquid stools after she got car sick on the ride down to Shands GI in Gainesville. Even though it’s only a 3 hour trip each way Nora’s system is so sensitive it always seems to get out of whack when she goes to these appointments every 2-3 months. The car rides to see the GI docs seems to do her more harm than good but we have to take her on a regular basis because they manage her TPN. The GI docs come to Tallahassee once a month for a digestive disease clinic, they have continued to want her to come down there because apparently they rush you in and out at the clinic and you only get a few minutes of face to face time with the doctor. But with her getting bigger and doing so well they said they’d be comfortable with her going to the clinic soon, hopefully that will take effect at the next appointment.

Since Nora has not gained all of her weight back from going off TPN in April they increased her TPN calories and volume (from 240mls to 320mls) and would like to see her up to 18-19 lbs within a few months. Her current weight is 16lbs 8oz and she was around 17 1/2 lbs when she went off TPN. Even though she is small for her age she is well proportioned and has good muscle mass and has gained her fat reserve back. She’s just our petite little princess. :)

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