Archive for the 'Nora Tidbits' Category

Mitochondrial Disease Awareness Week


September 24th, 2009

This week is Mitochondrial Disease awareness week. One of the children who we follow closely suffers from this incurable disease. His name is Gavin Owens. Gavin is a precious little boy and his family is absolutely amazing in their strength and persistence to try to give Gavin the best life possible. Gavin has suffered so much and our hearts go out to him and his family more than we can express. Even though we’ve never met him in person I read his blog daily and my heart aches for him, his parents and his sister.

click here to read Gavin’s blog

click here to read about Mitochondrial Disease

Gavin’s family is raising money that will go to help find a cure for mitochondrial disease. Please help them in their fight by purchasing a t-shirt or an other item from their online shop. All proceeds will go to the United Mitochondrial Disease Foundation.

click here to go to Gavin’s online store

Here’s Nora modeling her shirt.

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Rain, rain stay away!


September 18th, 2009

It has been raining here everyday for over a week straight and thankfully we finally got a much needed break from it today. Since we don’t take Nora to “kid-friendly” inside places (a.k.a. germ factories) especially during flu season, outside adventures are our main source of out of the house fun.  So Nora and I took advantage of it and got out and enjoyed some fresh air at the Lichgate Cottage. Even though it was pretty humid and muggy we still had fun romping around the grounds and checking out the new circular path with a rainbow mosaic in the center.

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With Nora’s great imagination we’ve still been going on adventures even though we’ve been stuck inside a lot lately. She loves to dress up in her favorite hat and pretends to be all kinds of places. Here she is at the beach…..
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the tissue paper was the sand, she grabbed her shades and a cup for her juice if she got thirsty while sunning. :) Nora gets very detailed with her pretend play and it makes me so happy watching her imagination grow.

Nora’s incisions from her port surgery are healing up very well. She was pretty sore for the first two weeks and continued to be leery of us changing her port needle and dressing even after it wasn’t sore anymore. But I think she realized with this weeks needle change that it really doesn’t hurt anymore and hopefully she wont have anymore anxiety about it. Which makes less anxiety for me too. Nora has always been very aware of her port, we talk to her about it openly and she knows that she gets her TPN through it. She knows that she had surgery and seems to understand a lot more than you would expect an almost 2 and a half year old to understand. She definitely wins the super tough and super smart cookie award in our family.

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Our First Family Vacation


August 16th, 2009

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We took Nora on her very first non-medical related trip last weekend. It was awesome to finally get to take her out of town and not be going to a doctor. We took her to St. George Island, less than two hours away, close enough to book it back home if we needed to but far enough away to feel like we were on vacation. We were only there for a day and a night but it was perfect. It was a good test trip for Nora and she did great.

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Nora had been telling us for weeks, if not months that she wanted to go to the beach. Pretty much the entire ride down she was telling us that she was going to put her “toes in the ocean”. She quickly changed her mind about that when she saw that the waves had control of the beach but she had lots of fun playing in the sand and collecting shells.

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click here to see a video of Nora at the beach http://www.youtube.com/watch?v=q0uDiB6tvB0

Hopefully this was just a taste of many more family adventures to come with Nora as she gets older and traveling isn’t so hard on her. There were a few travel related poop issues but overall she did very well and this experience was much better than previous travels.

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What’s Nora been up to?


August 7th, 2009

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Thankfully there’s not much to report on the medical front. Nora is doing well and as one of the other SBS moms blogged recently, in our world, boring is a good thing. Nora has been busy being her silly, sweet, smart self….and giving her mom and dad a hard time of acting like a normal, boundary testing two year old at times. But even with this new challenging developmental stage she has entered Nora is still a very good little girl.

Nora has recently mastered singing her ABC’s and can count from 1 to 11. Sometimes she’ll skip a letter or number here or there but for the most part she gets them all and in order. She’s been working on her counting for a while now but she went from not saying her ABC’s at all to saying them from A-Z in less than a week. Here’s a little clip of Nora signing her ABC’s.

http://www.youtube.com/watch?v=AwhXqWK9XOg

Nora has also mastered the art of being a total ham and making funny faces for the camera.
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Nora never ceases to amaze me. After strapping her in her car seat the other day, I cranked up the car but hadn’t put on my seat belt yet and she said “Mommy, where is your seat belt?” Impressed her mommy with her safety smarts that’s for sure!

One thing that Nora has been slow to progress with is potty training. We’ve been working with her for a long time now and she has all the signs that she’s “ready” according to the literature. She knows all about how big girls and boys go to the potty and will sit on it up until the very moment she has to go and then insists on getting off to go in her diaper. If we try to make her stay on the potty she freaks out and gets extremely upset. Nora has been going poo while standing up pretty much ever since she learned how to stand on her own. Besides going against potty training this has been a very good thing since it makes for a much easier clean up than if she pooped sitting down in her diaper. But just like Ruby the duck in one of Nora’s favorite books, Ruby In Her Own Time, she’ll come around when she’s ready.

Nora had her first “social” tea party with our very sweet neighbor Chrys. Nora had a blast and really enjoyed her first taste of chocolate from a nibble of a vegan, gluten-free brownie and thankfully her tummy handled it well.
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Happy girl….. :)

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Fun with food


July 19th, 2009

When dealing with short bowel syndrome food and eating is full of challenges and aggravation. But at the same time it can also be very exciting when new food doors open. Nora’s diet is still very limited but her tolerance to a wider variety of foods is growing and that is definitely something to celebrate. :)

We have been having lots of fun with food lately.
I’ll let the pictures tell the story…….
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Nora the chef helping to make some Nora friendly (gluten-free) banana bread and muffins.
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Nora loves fruits and vegetables. She has a very healthy taste for veggies but unfortunately can’t tolerate a lot of them. Even though Nora cannot eat a lot of fruits and vegetables, she still has a great time exploring and playing with them. Going to the local fruit and vegetable stand is one of her favorite adventures and she gets big kicks out of picking fresh fruit and veggies.
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Picking pears in our front yard with Daddy.

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Here Nora is modeling a buttercup squash grown just for her by my good childhood friend Jen, a.k.a. Aunt Jenny. Nora enjoyed eating it just as much as she did being silly and playing with it.
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Nora had a great time inspecting the corn from Aunt Linda’s garden yesterday afternoon.
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Playing with fruits and vegetables is what kept Nora entertained while she got her first haircut, well more like a trim, but it was still one of those monumental “firsts”. :)
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Since Nora has such little hair, I didn’t want to have even one strand of it cut off but her top wispy layer was starting to look pretty scruffy so the deed needed to be done.
Nora had no interest in sitting in the chair with a cape on so Aunt Linda did a great job of following her around and stealthily cutting her hair as she played.
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These last pictures have nothing to do with eating or haircuts, I just wanted to share them because my baby girl looks so darn cute. :)
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Maybe next year


July 5th, 2009

Last week the Oley Foundation held its annual conference. For those of you that are unfamiliar with Oley, it is a wonderful non-profit organization for people who have to rely on TPN and enteral feeding for nutrition. They fill a great need providing medical information and emotional support to people in situations like Nora’s and their families. The annual conference brings together patients from all around the country to learn new information and meet others living with similar conditions. This year’s conference was held in St. Petersburg, FL, still a bit away from us (4.5hrs) but a lot closer than where some of the other conferences have been held, like CA and NY.

We really wanted to get Nora to the conference this year and knowing that her fellow short bowel cyber friends Ellie and Bo were going to be there made us want to have Nora there even more so. For Nora to have met them in person would have been awesome and very emotionally healing (maybe more for us than her at this point). Especially since Nora said “he’s just like me” after watching a video of Bo with his coiled TPN tubing. Ugh, talk about tugging at her mommy’s heartstrings. So making the decision not to go based on Nora’s bad traveling history was a very hard one but ended up being the wise choice. Nora came down with a bad summer cold and fever the day the conference started. Had we been out of town when that happened it would have been awful. So we’re setting our sights on next year’s conference in hopes that Nora will be a much better traveler by then.

Nora is all better from her cold besides from a lingering runny nose and cough and thankfully she weathered it much better than I did. I ended up getting sick the day after Nora and ran fever for days instead of only one like she did. I had not been that sick in a long time. I’m glad it hit me harder than Nora showing that her little immune system is in better shape than mine these days. Very good news for Nora and lesson learned for her mommy to start taking better care of myself.

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Hello Mr. Duck, I can outlast you in the game of chicken any day………

Even though out of town adventures aren’t in Nora’s favor just yet thankfully we have our trusty ducks to visit at Lake Ella that are always up for some fun. :)

Other than Nora catching a cold she has been steadily progressing upwards since going back on TPN. She’s up to her usual tricks and advancing speedily in her developmental progress. Just like when she started walking after never really crawling much, she never showed much interest in sippy cups but she is all about drinking from “big girl” cups and mastered how to drink out of them without spilling it in a very short period of time.

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We’ve been trying to get more creative with Nora’s diet lately so she doesn’t always feel like she has to eat differently. Pizza is a frequent meal of ours, probably a little too frequent, but none of the ingredients pizza is made with Nora can have….no wheat crust, no cow’s cheese and no acidic tomato sauce. So Nora’s pizza is made with either rice or corn crust, goat cheese and baby food carrots in replace of tomato sauce (sounds a little gross but it’s actually very similar tasting to regular pizza). Nora knows no different and loves it. Ultimately Montana and I want to get on the Nora diet so we can always eat the same things together as a family and besides, Nora’s diet is much healthier than ours anyways.

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Now that’s amore’!

I finally got daring and cooked Nora some fish, fresh flounder, which is a very mild, flaky fish. Trying new meats with Nora always makes me a bit nervous but she loves flounder and thankfully her digestive system likes it too! We’ve yet to try any red meats with her yet since they are harder for any digestive system to digest. I think we’ll just stick with chicken, turkey and try new kinds of fish for now and keep trying to expand her diet in other areas.

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Still Celebrating


May 12th, 2009

Nora turned two years old two weeks ago and we are still celebrating. Although, I don’t think we’ll ever stop celebrating Nora, no matter how old she gets. :)

Nora turning two was a huge milestone. Getting her two years down the road from where she started with a strong and healthy constitution has been our main focus. The first two years of life are so important in so many ways. Now we can set our sights on her future with high hopes. We will still keep her as safe and protected as we can but we now feel that we can loosen the reins a little, broaden Nora’s horizons and share her with more of the world.

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Nora planting her first flower seeds, which she thought was a blast.

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Nora showing off her green thumb success a week later, she is very proud as you can see.

Nora is growing up so fast, physically and mentally. She is now up to 23lbs 6oz and she is just a hair shy of 33 inches tall. She is still gaining weight but at a slower pace for the past few months. Her growing energy must be focusing on height because she has grown a full inch in the past few months.

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As much as we want her to grow up big and strong, I as her mom can’t help but wish I could push pause just for a moment. The developmental stage she is in at the moment is so sweet, amazing and challenging all at once. Her language and communication skills seem to continue to advance at warp speed. She can pretty much say anything and she certainly understands everything that is said around her. Even when we try to talk in code around her she always seems to know what’s up.

Some of the newest things Nora has been saying….

When Montana tells her to “be careful” as we do quite often since she is a little dare devil, she will reply “don’t worry Daddy, it’s ok”.

Just recently Nora has been telling us “I have a tummy ache” sometimes shortly before she has to go poopoo. We’re glad she is starting to express how she is feeling but we can’t help but feel a little sad every time she says it because we know that we will be hearing this often.

She thinks it’s really funny to clap her hands and say “I got that skeeter!” as in swatting a mosquito in southern slang.

Nora has also been honing down her chicken clucking skills…..click here to see Chickie Nora

In the past few weeks Nora has started humming and singing. Her favorite songs to sing are “I see your hiney so bright and shiny, it makes me giggle to see it wiggle” and just as of today she started singing Elizabeth Mitchell’s “Ooby Dooby”.

Click here to see Nora’s Ooby Dooby debut performance :)

Sunday was a very exciting day. Nora went swimming for the very first time! Well not exactly swimming, more like floating around in her pool car and us holding her in the water but it was lots of fun. She took to the water right away and she didn’t even flinch about the water being a bit chilly. I guess it’s only natural she’s drawn to the water with fish oil running through her veins. :)

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Nora was so relaxed with the rocking of the water she almost feel asleep in her float.

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A dip in the pool sounds simple enough but this was one of those moments that’s a common activity for non-IV children but for us it was a monumental moment that we’ve been waiting for for a long time. Nora is now down from 7 days a week on TPN to only 6 days so we used her day off to take out her port needle and have some fun family time in Aunt Linda’s pool on Mother’s Day. It was a comforting feeling of familiarity that I hadn’t felt in a while. Since Nora has been born we’ve only been around both sides of our families just a hand full of times. Sunday was a just a glimpse of more special moments with Nora to come that we can’t wait to experience with her.

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