Nora’s GI appointment


May 4th, 2010

Nora’s GI appointment at the end of last month went really well. We had a good thorough discussion with her doctor about what’s been going on with Nora and her care plan. Overall Dr. Dimmitt thinks she’s doing great but would like to see her gaining weight a little faster. She’s currently 25lbs which is in the 3rd percentile for her age. Last time they saw her 6 months ago she was 23.5lbs so a 1.5lb gain in 6 months isn’t very much. Ideally they’d like to see her gaining a good 6oz a month which sounds reasonable to us.

So the plan is to increase her Elecare calories getting her up to 30cal per oz. (which we probably should have done a while ago but had been focusing more on foods) and to increase her Omegaven from 50mls 3 nights a week to 90mls 3 nights a week. Nora’s Omegaven dosage has never been increased since she first started it at 3 months of age. Her TPN will stay the same which is 335mls 3 nights a week. Her doctor thinks that just by increasing her Elecare calories and Omegaven calories that her weight should pick up pretty easily without changing anything else.

Also discussed was the concern of a couple test results. We did a 72hr stool collection last month to test Nora’s fecal fat (which means the amount of fat she’s loosing through her stool = fat she’s eating but not being absorbed). Her results were concerningly high and left all of us scratching our heads because Nora is doing so well. Even though her weight gain has been slow she is well proportioned and filled out. Dr. Dimmitt’s response to the test result was regardless of the high number, Nora is doing very well and advised me to try to not to focus on the numbers too much. He’s good at helping me keep my mind grounded. If the results were correct, his main concern would be high oxcalate absorption from the bowel so at some point in the near future we’ll check her urine for crystals as a precautionary screening.

The other labs that have been causing us some concern are Nora’s liver enzymes (AST & ALT) have been a bit elevated for the last few months. Since she is on Omegaven and her TPN dosage is so little this doesn’t make much sense. Nora has been on a vitamin D supplement for quite some time due to a low level in the past. Her vitamin D level hadn’t been checked in a while and when it was checked last month it was also elevated. Too much vit. D can can cause toxicity in the liver so hopefully this was the cause of her elevated liver numbers. Nora hasn’t had the vit. D supplement for a full month now so hopefully when she gets this months labs drawn we will see that both her liver and vit. D numbers are back in normal range.

Nora has been on a water soluble vitamin called AquADEKs which are great because they are easily absorbable. But they are also a very bright orange and are wrecking Nora’s teeth and have stained them pretty badly. So since all of her other vitamin levels are in the normal range we are switching her back to Poly-vi-sol. But just a suggestion to those with g-tubes I highly suggest the AquADEKs since you can bypass the mouth and still benefit from their easy absorbability.

Nora traveled really well this time. Before now, going to Childrens in Birmingham was the farthest Nora had ever traveled in one day and it has always been stressful on her system. This time we went to her GI appt. on the way back from our visit in Kentucky. When we drove up to KY we drove all the way in one day, 13 and 1/2hrs and Nora did great. We made frequent stops and she ate and pooped normally which has always been a challenge in the past. She would just tell us when she had to poop and we’d pull over. Nora doing so well on this trip really gave us the confidence to know we can start having more fun traveling with our girl.

At the end of the long trip Nora did end up coming down with a bad cold with fever. Even though we weren’t around anyone sick, these things are bound to happen when traveling which is why we’d been so protective of getting her too far from home before. But thankfully Nora bounced back after just a few days. We hated that she got sick but it was good to see her system so strong and recover so quickly.That’s our Super Nora! :)

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MISSING PERSON NOTICE – PLEASE READ


April 30th, 2010

We usually only make posts on Nora’s blog that are directly about her or SBS. But with this circumstance I felt that we needed to utilize Nora’s blog to help spread the word about Sunday Blombergh who has been missing since last Thursday. We do not know Sunday directly but a family who is near and dear to our hearts knows her. Please look at these flyers and keep your eyes open. She lives here in Tallahassee, FL but was last seen in Tifton, GA. If you have any information please contact me ASAP and I will direct you to her family. Or if you are on FaceBook please visit the page that has been created about her disappearance. Here is the FaceBook link:

http://www.facebook.com/home.php?#!/group.php?gid=112721198763582&ref=ts

If you click on the flyers it will open in full size.

Thank you for taking the time to read this.

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Birthday Fun


April 28th, 2010

Nora had a great birthday yesterday and celebrated in typical Nora style with the ducks at Lake Ella. Her buddies Rachel and Maya were there to join in the fun.

It got really windy when it was time for the cake so we had a little trouble lighting the candles. But once we got them lit Nora had so much fun blowing them out we relit them and Nora blew them out a good 3-4 times.

And she was quite proud of herself every time she blew them out. :)

Nora thought her butterfly net would make a great duck catcher!

The party had to be cut a little short because the rain blew in but even with the rain, all in all it was quite simply a perfect day.

My heart was singing with happiness all day long in celebration of our wonderful little Super Nora.



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Happy 3rd Birthday Nora!!


April 27th, 2010

Today is Nora’s 3rd birthday! How happy we are that we are three years down the road from where we started on this journey with a strong, happy and healthy Nora.

We’re having a little birthday celebration this afternoon at Nora’s favorite park so I’ll be sure to post some pictures of her party later. But for now here are some of the big birthday girl this morning dancing it up in dress up clothes from cousin Marin. Thank you cousin Marin for making Nora such special birthday decorations, having them here makes the day extra special. :)

We took Nora to Toys-R-Us over the weekend for her to pick out a few toys as an extra birthday treat. Our girl is a natural shopper. :)

She was quite in awe when we got to the aisle with all of the talking puppy pets.

Look at the smile on her Daddy’s face in the background. That’s one happy, proud Dad. :)

Happy Birthday sweet Nora, we love you so much!!

(If you looked at Nora’s site on her actual birthday yesterday, this really didn’t get posted until 4/28, even though I wrote it yesterday morning, couldn’t get it to post until now)

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Wow Wow Wow!


April 24th, 2010

In the words of Nora’s favorite silly cartoon character Wubbzy, this month has been a big “wow wow wow” month. And with Nora’s 3rd birthday just three days away the wowness will only continue.

There has been so much going on this month; Easter, Daddy’s birthday, big trip up to Kentucky to Grandaddy’s farm and a GI appointment in Birmingham, I know I would write a book so I decided to let the pictures do the talking. As the saying goes, pictures are worth a thousand words and we took so many pictures on our big trip I think these pictures are worth about a million. :)

I hadn’t updated Nora’s photo site since January so now it is all updated from the past three months, so sit back and enjoy the Noraness of it all. :)

http://norathomas.shutterfly.com/

I will post more in the next few days with details of Nora’s GI appointment and I’m sure I’ll have to sneak in a few details of our wonderful trip to my Dad’s farm. :)

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Playdate with Maya


March 27th, 2010

Nora had her first official “playdate” with my good friend Elizabeth’s daughter Maya this week. Nora has played with cousins at family get togethers, and we’ve met up with some friends and their kids at a park a few times but this was the first time that Nora had a friend over on her turf to play.

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It was absolutely wonderful, Nora and Maya got along great and had a blast just being two sweet little girls together. Maya is just 9 months older than Nora so they are close enough in age to make good buddies.

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(as you can see by Nora’s bloated belly, she was having so much fun she wouldn’t even stop to poop even though I knew she had to and kept trying to get her to!)

We’ve been guarded with Nora’s interactions with other kids from the start to lesson the chances of her getting sick. But we also haven’t wanted to keep her too isolated and keep her from socializing and playing with other kids. It’s been a hard balance, we’ve been trying to have playdates for a while but it seemed that every time it was about to happen the other child would come down with a cold or some other sickness. So this playdate was a long time coming and very good for our hearts and souls. Elizabeth and I are planning to make a Maya and Nora playdate a weekly event.

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I think this is just the beginning of many fun happy moments to come. :)

On a side note, Nora hasn’t said “blah, blah, blah” since she learned that it will get her a quick ticket to time out. Like any little one her age she likes testing the waters but she’s a smarty and is learning fast that time out is no fun.

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Blah, blah, blah…


March 21st, 2010

Apparently that is what Nora hears when I am telling her why she shouldn’t be doing something after mommy has already told her not to. With Nora’s ever growing toddler independence, boundary challenging and general mischief making she has been coming up with different ways to let us know that she does not like being disciplined. Most recently she will look me straight in the eye and say “blah, blah, blah” while I am telling her why she needs to obey after she has done something that she knows she shouldn’t be doing. This girl is barely 3 years old – I thought that was the mindset of a teenager?!? Oh jeez, we’re in for it already.

Every child goes through the phase of wanting to put everything and anything into their mouth. As a younger baby Nora seemed to have skipped over this phase but she sure is making up for it now. From sneaking a drink of soapy water to chewing on curly ribbon…..did we really think we were going to be so lucky to miss that phase? Well yes, we foolishly did but we were wrong. When I caught her chewing on the curly ribbon that really through my nerves for a loop, thinking about what could have happened if she had swallowed it….ugh.

Our big girl toddler Nora is certainly keeping us on our toes and although sometimes it can make you want to pull your hair out you gotta appreciate her creative ways and love that she’s just being a typical toddler. A typical toddler with medical sense and IV’s is proving to be an interesting experience. The other morning Nora was ready to run around before her TPN was finished infusing, getting impatient with being restricted by the pole she picks up her line and says “I need some scissors!”

And when she pretends to put port needles in her dolls and stuffed animals and tells them they are going to the hospital, a part of me can’t help but be a little sad that this language is even part of her world. But then the short lived sadness is overridden by the fact that that all of her medical pretending is always in a happy and positive way and I know that it is a good thing for her and just part of her everyday normal.

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She may have a short bowel but we don’t see anything short of a typical, happy, silly toddler. Do you? :)

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