Nora KayLee Thomas is 4 Years Old!!


May 7th, 2011



Nora turned 4 years old last Wednesday, April the 27th. We had a small family celebration on her birthday then had a party with her friends last Saturday.

Tearing into her gifts on her bday morning.

Bubbles and balloons! :)

Nora’s big gift from us for her bday was a playhouse, which she has been having a blast playing in.

And when Saturday came for her big celebration with her friends, she had lots of fun being the playhouse hostess.


Time for presents……

and cake! (can you tell the cake is very serious business?) :)

And the most special gift of all was a visit from Nora’s surgeon and friend, Dr. Crooms.

Happy Birthday our sweet, darling Super Nora!! You are the light of our life, such a special blessing we have been given to be your parents. Love, Mommy & Daddy

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Interesting Article


April 21st, 2011

My mom sent this article to me and I found it so interesting and exciting that I wanted to share. Even though the research is just in the beginning stages, down the road this could play a big part in helping with SBS treatment and diet. With so many complexities to SBS and other GI problems, the more intestinal knowledge we have the better chance for success.

http://www.nytimes.com/2011/04/21/science/21gut.html?em&exprod

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Time flies when you’re having fun


April 15th, 2011

It’s hard to believe that Nora will be four years old in less than 2 weeks! I also can’t believe it’s been so long since the last blog post , it seems like these last 2 months have flown by faster than usual. There has been lots going on in the Thomas household and I happily report that it’s mostly been good. Besides Nora having a nasty double ear infection at the end of February with horrible GI side effects from the antibiotics there has been a lot fun and exciting moments.

We had some very special visitors last month, Nora’s Nanny and Grandaddy came down from Kentucky to build us a greatly needed laundry room (Thank You!!). Nora got in lots of good time with her grandparents and the visit was wonderful. Nora even helped out with the construction. :)


And of course while they were here Nora provided plenty of good entertainment of dressing up, dancing and strutting her silly self for them.

Nanny and Grandaddy even got to catch a Twinkle Toes class while they were here.


I love these big post-show smiles. :)

Nora took Nanny and Grandaddy out for a night of yummy seafood. Nora thoroughly enjoyed her red snapper and said she loved “eating at fancy restaurants”. Nora’s been eating out at restaurants more often these days, not too often but compared to never it seems like a lot. Even though her restricted diet and food allergies poses a challenge, as long as I bring her snacks and scope out the menu beforehand we’ve had pretty good success and she really enjoys the experience. When we’ve had instances where everyone else is eating something she can’t I think it’s been harder on me than her but I’m trying to learn to let worry go when she’s never known any different anyways.

After the big construction project we snuck in a quick run to the beach for the first time this year while Nora’s buddies Maya and Rachel were there on their spring break. Nora was so excited to head down to the beach she had her bathing suit on before sunrise and patiently waited for her buddies to wake up before busting into their room.

Lets go! :)

Last summer Nora wanted nothing to do with swimming in a pool or the ocean because she said it was “too big”. She still wasn’t interested in getting in the ocean but she was all about testing out the water in the pool at the beach. Now since she’s realized there’s nothing to be scared of she’s been a little sprinkler and kiddie pool addict and has been playing in it just about every afternoon that she doesn’t have her port needle in.


Watch out summer, here comes Nora! :)

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Twinkle Toes Nora


February 10th, 2011

Nora started “Twinkle Toes” ballet class a few weeks ago. This is super exciting news because firstly she’s always been a little ballerina at heart and secondly this is her very first class of any kind. Since she had never been in a structured class environment before she was a little overwhelmed at first, being distracted by watching the other little girls instead of following the teacher. But now she’s got the hang of it and has been having lots of fun in her class. :)

With the thoughts in mind of Nora’s germ exposure going to ballet class, we decided to follow the idea of other short bowel parents who have written brief letters to the other parents in the class explaining our situation and asking them to let us know if their child has been sick recently. Nora seems to have a strong, well established  immune system but with flu season upon us we decided it was best to play it safe.

Writing a letter like this is was a bit of an awkward thing for us and apparently when I handed them out to the parents at Nora’s first class my awkwardness overcame my social skills. I didn’t give any explanation while passing out our letter, or really say anything more than “can I give this to you?”. I was feeling a bit like I was handing out a sales flyer from the looks I was getting but I was hoping my weirdness was mostly in my head. Apparently not, after class Montana assured me I came across like a total weirdo and looked like I was soliciting for Amway! Oh well, we had a good laugh about it and at least the deed is done.

After hunting around online for ballet gear for toddlers at sites like BabyGenie.com and Amazon we opted to shop locally and I am glad we did. Even though this picture is a little blurry I just had to share Nora’s super excited expression when we went to the ballet store to get her slippers and outfit.

Twinkle, twinkle! :)


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Christmas, Snow and Ice Skating!


January 18th, 2011

There is so much to catch up on from last month. I keep telling myself I’m not going to let the blog go so long without updating but that hasn’t happened yet. I don’t really make resolutions but I’m going to try to make this one for 2011.

It seemed that Christmas came and went faster than usual last year. But to a 3 year old I’m sure every day seemed like an eternity waiting to see what Santa would bring. All month of December Nora would ask every few days if it was Christmas yet. But she had lots of fun while the time passed, adding new, out of the ordinary ornaments to the tree on a daily basis. By the time Christmas was over she had anything you could think of hanging off the tree, toys, baby shoes and even her big girl undies from Santa donned the tree on Christmas day…silly girl. :)

A happy girl on Christmas morning

Ready for Christmas lunch and still smiling……

Christmas is awesome!

We got an unexpected surprise the day after Christmas – snow flurries in Florida! It wasn’t even enough to stick to the ground or even to see unless you were looking hard but it was snow……. in FL! This was Nora’s first time seeing snow so that made it even more exciting. Since there wasn’t enough to build a real snowman we had to improvise with our lighted snowman and Nora still had a blast “building” him.

Nora got to experience another winter first a few days later when we took her ice skating. Even though it’s been extremely cold down here but not quite enough to actually freeze a lake. They had a synthetic ice skating rink set up downtown which was the real deal to Nora and she had a great time.

(a little side note…… I just wanted to point out something that initially may seem very insignificant – the little red wristband on Nora’s wrist that she was given to wear when we bought her ice skating ticket. When I went to put the wristband on Nora I noticed she began to look a little nervous, then I realized that until that day, the only wristbands that Nora had ever worn is when she’s admitted for a hospital stay or procedure. We immediately assured her that the band was for ice skating and then she was ok and ready to go.  I’ll be keeping that first little happy red wristband in my Nora keepsakes to remind me of this very happy first.) :)

Nora thought the huge ornaments they had downtown were pretty cool and they put her in a very silly photo shoot mood.


I finally updated Nora’s YouTube site if you want to see the silly girl in action. :)

http://www.youtube.com/profile?user=norasmamma#p/a

These wishes come a little late, but we hope everyone had a Very Merry Christmas and wishing you all a Very Happy and Healthy New Year!! Love, Nora, Montana and Sarah

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Grandaddy’s Sauerkraut


December 20th, 2010

For Thanksgiving Nora’s grandparents from Kentucky came down to visit, which always makes for a very special holiday. My Dad has gotten into making his own sauerkraut recently and brought a jar down for Nora to try after learning about the digestive benefits of it. This was a new discovery for all of us and we were really excited to learn about it. But only sauerkraut made the traditional way has good digestive bacteria, most of the store bought is made with vinegar and does not posses the healthy benefits.

Grandaddy gave us a lesson on how to make traditional sauerkraut and of course Nora was eager to help. :)

We weren’t sure if Nora would like the strong taste of sauerkraut but she loves her “Grandaddy’s sauerkraut” as she calls it. She has wanted to eat some almost everyday since Thanksgiving. Maybe it’s the magic touch her intestines needed to get back on track. Whether it’s a coincidence or not, thankfully Nora’s pain and bloody stools have been more improved in the last few weeks than they have been since all of this started months ago.

Nora enjoying some of her Grandaddy’s kraut and beans with a big smile of enjoyment! (of course her favorite buddy Jingle Bear needed a plate too)

We think her feeling better is a culmination of the changes we have made to her diet, giving her magnesium on a daily basis, and taking her to acupuncture for specific motility treatments. We also took her to cranial sacral therapy, which a lot of people think is related to head issues (as it can be) but in simple terms it’s kind of like gentle massage for the organs to get their energy flowing properly.

We think cranial sacral work will be very beneficial to her  in the long run but she hasn’t warmed up to it just yet. Since Nora had to go through so many physically invasive procedures in the last few months, she has become overwhelmingly sensitive to anyone doing anything to her resembling a medical procedure.  But the therapist was very helpful and showed us some exercises we can do with Nora at home to help open up her system.

We had such a great time visiting with my parents. Even though Nora doesn’t get to see them very often she knows how very special they are and loves them very much.

Nora enjoyed showing them all around town and felt like big stuff taking Nanny and Grandaddy out to lunch while they were here.

and when it came time for Thanksgiving dinner do you think she was ready to eat??

She sat herself at the table a good 5 minutes before everything was ready and had to do a little early taste testing. :)

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Trying to find balance


November 21st, 2010

Sorry for such a long time in between posts. I’ve gone to update many times but as soon as I try to start typing my thoughts get all jumbled and I just end up staring at a blank screen. I’ve been waiting for my thoughts to clear up but I think if I wait any longer Nora’s blog may never get updated so I’m just going to push through it and hope it turns out legible.

So after Nora’s contrast enema at the beginning of Oct. we learned that her entire large intestine is dilated with poor motility. When we first discovered that she had bacterial overgrowth back in Sept. it was thought that it was the cause of the dilation and poor motility but in fact it could be the other way around. But there’s no way to know for sure, kind of like the age old question….which came first, the chicken or the egg? Although it’s hard not to wonder, which came first really doesn’t matter, just getting Nora back on track is what matters.

Basically her large and small intestine have opposite needs at this point. Food needs to stay in her small intestine as long as possible for maximum absorption but food needs to clear out of her large intestine quickly so she doesn’t get backed up. Her large intestine not clearing out correctly causes her pain, bloody stools, creates a nice home for bacterial overgrowth and ultimately makes it more dilated and motility even worse. Even though Nora easily poops 5-7 times a day technically she is constipated because her bowels are not emptying out as they should be. When she had a regular abdominal xray in Aug. the radiologist’s note read “does this patient have constipation issues?”. At time we actually laughed and thought he was an idiot – who can poop so often and be constipated?!? Well we’re not laughing now and he obviously wasn’t an idiot.

Initially, when we finally learned what’s going on and how the needs of her small intestine and large intestine are against each other it was really overwhelming, well I guess it still is, we’ve just adjusted to it more. Completely changing the way we’ve been thinking about and feeding Nora for the last 3 and 1/2 years is a big adjustment.  All along we’ve been feeding her foods that will stay in her system as long as possible, even adding thickeners to slow it down and avoiding foods that go through her quickly. Which without motility problems that’s just what you want with SBS but now that she’s developed poor motility…..ok here’s where my mind starts to get boggled…..you can see our challenge. So now we’re trying to find the balance of getting food to stay in her small intestine long enough to absorb adequate nutrition but then quickly go through her large intestine. We have not found that balance yet.

Taking laxatives on a daily basis is usually the recommended treatment for poor motility but ultimately they make the problem worse because the colon starts relying on artificial stimulation and gets even lazier. With Nora still being so young we are hoping to only try laxatives as a last resort. So we’ve been trying different foods, supplements and treatments (which I will go into detail about with a later post)  to try to get her large intestine working properly. At this point we are going through lots of trial and error hoping to find the right combination of treatmetns. Nora is still having some pain and bloody stools on a frequent basis but it’s no where near as bad as when this all started a few months back, and some days are better than others.

Nora’s GI doctors want us to continue on this trial and error path as long as her pain is “manageable” meaning that she isn’t in constant pain as she was a few months ago. If we can’t get the dilation in her large intestine down and get it working properly then at some point her doctors will want to discuss surgery to taper down her large intestine. Obviously that is something we want avoid at all cost. Nora’s weight has been down since all of this started so her TPN calories have been upped and she is still getting some supplemental hydration fluids. She may need more TPN than she’s needed in a while to get her through this and that’s ok, we’ll take all the help we can get.

Now on to the brighter side of life…….Nora’s first trip to the fair! :)




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