Nora loves her squash!


January 16th, 2008

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Nora ate her first vegetable 10 days ago, butternut squash – yummy!! She has handled it very well and it seems to be doing her system good. We bake it and then blend it with her rice porridge and she loves it. We had been debating what Nora’s next food should be after the rice for a while. We got a lot of different opinions and were crossing our fingers that the new food would agree with her short bowel. By the looks of her poopies she is digesting it wonderfully. The extra solids have been great for Nora’s weight, she’s at an all time high of 14lbs 15oz as of Monday’s weigh in!

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Nora had a great visit with with Dr. Crooms on Tuesday, the surgeon who performed both of Nora’s surgeries and whom we will forever be thankful to for saving our precious little sweetheart. I can’t help but mention what a wonderful man Dr. Crooms is every time I talk about him. His surgical skills are amazing but his heart is even more so. He told us that he keeps a picture of Nora and him that we took on his mantel and looks at it everyday to remind himself that miracles do happen. We met with him to discuss removing Nora’s g-tube button since she has been eating solely by mouth since mid July. We have always been told by every doctor we’ve met with that if she didn’t need to use it by 6 months to 1 year of age than it would be safe to take it out. Nora is 10 days shy of her 9 month birthday and we’re feeling that the pros outweigh the cons of taking it out at this point. Of course there is always that big IF she ever did get very sick and need it again than that would mean another surgery. At this point the button is being used as an exit for her food rather than entry, by accident of course. It opens very easily and Nora’s little fingers are quick to open it and before you know it a bottles worth of formula will leak out. So with Dr. Crooms advice to take it out that made us feel comfortable with making the decision to do so and will take her back next week to have it removed.

On a last note, Nora has learned to wave hi and bye, clap and give high 5’s in the past week. We have been working on waving for a little while and once she got it clapping and high 5ing came soon after. Now she is an expert clapper and claps when she sees or hears about something or someone she likes. Especially when she sees her favorite kitty outside. But not just any kitty, she is very particular and only claps when she sees her favorite one out of the three outside kitties we have. She’s also been saying Dada a lot, sometimes entire conversations of Dada! All of a sudden our little baby is turning into a little girl and picking up new skills by the day.

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Practicing her waving in the carseat mirror on the way home from Dr. Crooms.

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She also loves to tear it up in her walker, or we call it her car and boy is she speedy!

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Happy New Year!


January 5th, 2008

Happy is indeed the word to start off the new year! Nora ended 2007 far above and beyond how she entered it earlier in the year on April 27. We are so happy with how she has progressed and are feeling very hopeful for her continued improvement in the year ahead.

Nora’s first day in 2007

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Nora’s last day in 2007

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Our shining star!

It brings back a lot of emotions looking at Nora’s first days, sad but also happy to see how far she has come. She continues to amaze us everyday with her strength and happy spirit. She can be quite the silly goose and brings us a lot of laughs with her growing personality.

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Nora’s first tooth finally broke through on her 8 month birthday on 12/27. Or at least that’s the first day she let us get a peek at it. I’ve nicknamed her Percy lately because she’s always holding her little mouth tight lipped rubbing her bottom lip on her new tooth. The rest of the time she’s feeling it with her fingers.

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Teething has not been good for Nora’s appetite. She goes through times of not wanting to eat very much when she’s in the midst of a teething spell. We know this is normal for all babies but for Nora it can be a set back when every ounce counts. Her weight has been fluctuating the past few weeks with her teething. She’s yet to make it above 14lb 10oz. She’s gotten there twice but had lost 8oz on last week’s weigh in. Thankfully her appetite seems to be picking back up this week and we’re expecting a gain when she’s weighed again on Monday. Overall Nora’s feedings are going great. She’s eating 106ml (3.5 oz) bottles of 22 calorie Elecare every 2-3 hours and eating her rice 2 times a day (when she’s not teething too bad). We’re wondering if she’s getting tired of the rice and is ready to expand her diet. We talked to her doctor last week about her diet and plan to start introducing new foods very soon. Homemade organic squash is most likely next on the menu.

Nora’s first Christmas was great. She wasn’t quite sure what to think of me showing how to tear into the gifts but she certainly enjoyed playing with the tissue paper. I’m sure by next Christmas she’ll have the gift opening thing down pat.

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It was such a special time of year to have our precious little Nora to celebrate. She was by far the best gift under the tree. :)

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Nora’s First Christmas!


December 31st, 2007

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Ms. Nora Claus
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Santa Nora
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Merry Christmas!

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Nora’s Big Girl Highchair


December 13th, 2007

The last two weeks have been great for Nora. Sorry for the lack of posts, we’ve been busy playing and having too much fun! :)

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She’s bounced back from her setback last month and as of Monday’s weigh in she was up to 14lb 4oz. Just 6 more ounces to go to get her back to her pre-anti biotic tummy episode weight. She’s eating great, full of energy and is just about to start crawling. Today she was pulling both of her knees under her tummy and pushing them back like a little inch worm. Her vocabulary is developing daily. It seems like every morning she wakes up saying new sounds and last week she said Mama!! The physical therapist from the Early Steps program came by for a follow up visit from Nora’s initial assessment a few months back and she was very impressed with Nora’s cognitive skills and coordination. No developmental delays here, Nora is right on track for a 7 month old and that was even while she was still half asleep because we had to wake her up from her nap for the appointment.

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Nora is all about eating these days. She’s eating her rice porridge twice a day and if she sees anyone else eating out of a bowl she thinks it’s for her. Montana was eating popcorn the other night and she practically dove into the bowl!

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We were considering expanding her diet beyond Elecare formula and rice porridge soon but since she’s doing so well at the moment we don’t want to rock the boat and will stay on this course for now. Tuesday evening marked a very important milestone for Nora, she got a big girl highchair!!!

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(yep, we joined the short gut rain forest highchair club) :)

“Hey what’s this on my bib?”

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“mmm rice porridge is even yummier straight off the bib!”

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Nora getting a highchair is huge for us. In the weeks and months after she was born we were preparing ourselves for the mindset that she may never be able to eat orally or if she did it wouldn’t be for a long time. Everything is put in perspective when the daily things that we take for granted are suddenly not there. So when we are given these gifts it makes the experience that much more sweeter. So make a mess my darling Nora playing in your rice porridge and have fun with the eating experience because mommy will enjoy cleaning up every bit of it!

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Nora is ready for Christmas!

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We were standing by the tree the other night and she zoned right into her ornament as if she knew it’s just for her. And then of course she wanted to lick it like she wants to do to everything she can get her hands on these days.

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Watch out Rudolph, you have some competition for the cutest reindeer this year.

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Lucky Number Seven!


November 28th, 2007

Yesterday was Nora’s seven month birthday, Happy Birthday Nora!! There are many good things to report from the past few days. On Mondays weigh in Nora had gained back 8oz of the 1lb 4oz she had lost over the past couple of weeks! Monday’s lab results are just as exciting, her Bilirubin is 0.5!!! It was the same last week and 0.8 the week before that and I can’t believe I forgot to post those wonderful numbers. Thanks to Omegaven Nora’s Bilirubin was the one thing we haven’t been having to worry about these past few weeks. Then this morning Nora awoke us with a beautiful thick poop! I had never been so happy to wake up to poop, yes, I’m really this excited about poop! :) Her BM’s have been very loose for quite sometime now with little consistency. Even before the two and a half weeks of liquid diarrhea her poops had been pretty loose (which was a symptom of Scarletina that we weren’t aware of at the time). When you’re a parent to a short bowel baby thick poops are always something to celebrate. :)

We usually don’t get our Christmas tree this early but with Nora’s first Christmas approaching we wanted to start the celebration right away. We got our tree Sunday and decorated it Monday evening. Nora thinks the lights are pretty neat. Christmas has always been my favorite holiday but I know that this year will be the best one by far!

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Little Miss Independent…………….Nora has been eating her rice porridge for two weeks now but after the first few days of eating it with a spoon and a bowl we were having to blend it up and put it in her bottle or she wouldn’t eat it. We were confused by her disinterest in eating with a spoon because she had always enjoyed it that way with the dried rice cereal. We would let her play in it a bit and hold the spoon but since Nora hadn’t been feeling well I guess my over-nurturing hormone kicked in and I was just trying to hold everything for her and put it in her mouth. Well thanks to Grammy’s visit yesterday we figured out that me holding the spoon for her was the entire problem! As soon as she gave Nora the spoon she was right back into being excited about eating it that way again! Duhh me! So she ate her rice porridge lunch out of a spoon again today like a big girl. She made quite a mess and I’m not sure how much really made it into her mouth but it was all good. :)

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Nora The Ham


November 24th, 2007

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Happy Thanksgiving!


November 24th, 2007

We certainly have a lot to be thankful for. Nora has truly taught us how to be thankful and appreciative for all of the wonderful things in life, like life itself!

Nora sitting at the dinner table awaiting her first Thanksgiving! “Hey where’s the turkey?”

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Mmm Elecare…..she pretended it was turkey flavored. :)

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The past few weeks have been very hard on Nora but on Thanksgiving day she finally turned a corner and really started feeling better. Since the rash and all of the troubles that followed started almost three weeks ago, Nora had not been her usual chatty self. She had been very quiet and low energy. But on Thanksgiving day she started talking and hamming it up to show us that she’s back on track. We’re so happy to have our beaming Nora girl back!

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With all of the diarrhea Nora was having she developed Colitis and begin having bloody stools last Friday (11/16). I guess this is the pattern we should expect every time she has to have antibiotics, orally or intravenous. It was nerve wracking to see but this happened the last two times she had antibiotics so at least this was something we had dealt with before. She had 7 days of bloody stools and hopefully it has subsided for good now. Her poops have been blood free since Thursday afternoon (11/22). With all of the pooping and decreased feedings Nora has lost 1lb 4oz in the past two weeks. :( She had been on 22 calorie Elecare for months now but she had to go back to 20 calorie Elecare. Now that her system is getting back on track and the bloody poops are gone we’ll begin tapering her back up to 22 calorie in the next few days. There has been one change in her diet in the right direction though. We started feeding Nora fresh rice porridge instead of powdered rice cereal last week following the recommendation of the Chinese acupuncturist and nutritionist Dr. Min Tian. Dr. Tian has been a great asset to many members of our family for years now. She is truly amazing, western medicine may not understand how she does what she does but it works. She said that dried boxed cereals tend to grow mold very easily and also there’s nothing better than the real thing. We started Nora on sweet Sushi rice and she seems to really like it. We slow boil it for 1-2 hours, or however long it takes to get it nice and mushy, using one part rice to ten parts water and then mix it with her formula. She’s been eating fresh rice porridge for almost two weeks now. Once her tummy is settled for a bit we are looking forward to begin introducing more new things to Nora’s diet.

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