Archive for May, 2010

Memorial Day Fun


May 31st, 2010

On Memorial Day Nora discovered how fun sparklers are. :)

Fireworks are fun too but a little loud.

Last year the fireworks were too loud for Nora and scared her. But this year she realized all she needed to do was cover her ears and enjoy the visual show. We only had a few fireworks on Memorial Day and she wanted more. So for the 4th of July we will have to do it up big time. :)

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First trip to the dentist


May 24th, 2010

We attempted to take Nora to her first dentist appointment recently for a general check up and cleaning. She was all geared up and excited to go, fine and happy in the waiting room enjoying watching the other kids run around. She was just a tad nervous when she went back…and then the hygienist put on gloves and a mask to clean her teeth and then…….things went down hill quickly, very quickly. Poor Nora had such extreme anxiety and got very upset, she clung to me with all her might as if she was trying to melt into me to hide.

The only experience Nora has had with people wearing a mask and gloves is when her port is going to be messed with which makes her very nervous. I can’t believe that neither I or Montana didn’t think about this situation before her appointment and talk to her about it. I was kicking myself in the butt big time for not making this connection ahead of time. The hygienist was very understanding and didn’t try to pressure us to stay. The dentist on the other hand wasn’t rude but let me know he thought it was important for Nora to tough it out. I politely let him know that we have had to force Nora to do many unpleasant things for medical necessity in her life and a teeth cleaning was not going to be one of them. So we ended the appointment very quickly and will try again in a few months.

By the time we left Nora was smiling and even shook the hygienist’s hand and promised to let her clean her teeth next time. Since this experience we have had many talks with Nora about all the different reasons people wear masks and gloves besides to mess with her port.

Life is one big learning experience for all of us.

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Trip to the Beach


May 17th, 2010

Our trip to the beach was great. It was just the relaxing distraction we needed from the everyday hustle and bustle. I wish we could live in day dream beach land forever. I loved seeing how the work stress just melted away from Montana’s face as soon as we arrived. He works such long hard hours to support our family. I am so very thankful for his devotion and giving our family the opportunity for me to stay at home with Nora to give her the undivided care and attention she needs.

A good sword fight is always a good stress buster. :)

Nora had a great time but it seems that the idea of the beach is much more appealing to her than the actual beach. Sand between your toes, big waves and the heat can be a little much for such a little girl. She only likedĀ  being down on the water for short spurts at a time. Even though it made for more work trudging back and forth to the beach house so often it was actually just what Nora needed to do to not get overheated and stay hydrated. Short bowel causes enough hydration issues in itself and you add excessive heat to the equation and things can go bad fast.

This was Nora checking out a fellow toddler and his baby brother down the beach. She found them very intriguing and insisted we walked down for a friendly hello.

Nora the wind warrior! I think Nora’s favorite thing about the beach is that the wind is always up for good kite flying. And playing in the kite tales on the deck makes for a lot of fun too. :)

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A Butterfly Emerging


May 13th, 2010

For Nora’s birthday we got her a butterfly hatching kit. The baby caterpillars arrived the week before her birthday and they all cocooned on Nora’s birthday, what a great day to start their transformation. :) The butterflies emerged from their cocoons a week later and we let them free.

The whole process was really neat to watch and it couldn’t help but make me think of Nora’s journey. Our little butterfly is finally emerging too. We’ve kept her close and safe for three years and now it’s time to let her grow more freely. Our trip to Kentucky was really a big milestone in getting Nora out in the world. It gave us confidence that our little girl is now strong and healthy enough to handle bigger experiences and not get set back from it.

Nora is one happy, silly butterfly.

We are beach bound for the weekend to enjoy it while we can. With the uncertainty of what will happen to our beaches from the non-stop oil leak pouring out into the gulf it’s hard not to feel like the clock is ticking. We haven’t been to the beach since last summer and this will be only Nora’s second time to St. George so we are really looking forward to the weekend. :)

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Mother’s Day


May 9th, 2010

Candies, flowers and cards are nice

But the most treasured gift of all is the gift of your life

I will forever be thankful that you are here

I will forever honor being your mother, year after year

I love you Nora.

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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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