We thought that Nora would be having her endoscopy this week but it was rescheduled at the last minute so she will be having it done the first of next week.  Since there are no pediatric GI’s in our area we will be taking her to Birmingham where her GI’s are to have the procedure. Most of the time an endoscopy is done as out patient but since we will be so far from home they will admit her the day before to clean out her bowels for pre-op. We’re really hoping this part wont be as bad as we are anticipating. To keep her mind occupied from being hungry since she wont be able to eat, we have lots of goodies and surprises packed for the hospital stay. As long as they don’t find anything too serious we should be headed back home the following day.

Thankfully she is still doing ok and her symptoms are minimal but they are still there. She has been on a very bland diet for over a week which we’re thinking is helping  to not irritate whatever is going on. Nora’s abdominal xray didn’t show anything obviously concerning and her stool test came back negative for pathogens like samonella.

We have talked to Nora a lot lately about her special tummy and that we’ll be going to the doctor to have a special procedure done that will hopefully make her tummy feel better. She really likes the sound of the idea of her tummy aches going away. She was all ready to go on our trip to see the doctor and was a little disappointed when we told her we had to wait to go. The other day she had a tummy ache and after it went away she said “I feel better now, but I still need to go to the doctor”. I hope we didn’t hype it up too much because they may not be able to make her tummy aches go away but hopefully we will get some insight to answers that we are anxiously awaiting.

Nora is still her sweet, happy self and having lots of fun. Especially with her best buddy Maya.

Introducing Nora the monkey fairy princess!

Nora has been having a rough time lately. We need to figure out what’s going on and get our sweet girl feeling better. Over the past few weeks her BM related tummy pains have been getting worse. Then last week they seemed to worsen to a whole other level and we started seeing blood in her stools. We did a random spot check of her stools, including ones that didn’t have blood seen by the naked eye, and 5 out of the 6 samples tested positive for blood. After learning this it makes us wonder if she has been having blood in her stools for sometime and we just didn’t know it.

When she’s not having a tummy ache, for the most part she’s her usual self but overall her energy level is decreased and she is obviously just not feeling well. Blood in stool can be a sign of many different things and when SBS is part of the equation the list of possibilities grows. We’re waiting on the results of her stool cultures, she had a regular abdominal x-ray this morning (to check for something obvious like dilation or an obstruction) and she will be getting and upper and lower endoscopy soon. We should get the reading from the x-ray tomorrow and we are really hoping that the endoscopy will find something that isn’t too serious and can be easily treated.

Thankfully Nora has been feeling a good bit better for the last few days with less pain and not as much visible blood in her stool. She’s still not 100% but it’s good to see her not quite as puny and in so much pain.  I’ll post more once we get some of the test results back.

And leave you with pictures of our cutie in pigtails now that her hair is finally long enough for them.

That’s what Nora has been saying a lot recently since she’s been having so much fun playing with her pals Maya and Rachel. Nora has been making up for lost time socializing and is loving every minute of it. Between frequent playdates with her new best buds, attending her first birthday party for another child and meeting a new friend this weekend she’s keeping her calendar full of fun.

For Nora’s cousins Lucas and Olivia’s birthday party, we brought Nora-safe equivalents to the cupcakes and ice cream they were serving. And Nora’s mango coconut milk ice cream on a gluten free cone turned out to be quite the hit! Mama Tom was excited that she now has a yummy ice cream she can eat with her diverticulitis and the kids just thought it was plain ol’ yummy. Nora had a great time and so did we. It was perfect that Nora’s first attendance at a kid’s bday party besides her own was at her great-grandmother’s house.

The birthday boy called Nora over to him and said he needed to “tell Nora’s something”. He made her wait for it and she was listening very intently for something important.

Nora started to get suspicious…..look at this face….she’s starting to catch on…..what’s this boy going to say..

In typical Lucas fashion he delivered a very important funny face message, I think it was worth the wait.

This weekend Nora and I met up with my friend Susan and her nephew at the museum of arts and science. It’s a great hands on place for kids to learn and play. (germaphobe alert)

John Corbin is about 6 months older than Nora, they got along good and made very sweet playmates.


Nora had a great time at the museum and I had a great time watching her be just one of the kids. But it was definitely a good dose of exposure therapy for me. It was by far the most germ friendly environment Nora had ever been in before, so many kids, so many touchable surfaces. I tried not to be too crazed wiping Nora’s hands down but she kept rubbing her nose all the while having a wonderful time playing with all of the toys. Then in typical 3 year old fashion Nora licks one of the play plastic foods just as I’m telling Susan how I’m seeing things through my germ goggles. (ahh!) Oh well, she had a great time and this experience was long overdue and she deserved the pure joy of it. (and hopefully she escaped cootie free)

(for those of you who’s eye caught the little girl with the backpack and were wondering, it’s just a backpack. in our experience seeing such a little girl with such a big backpack usually means there’s pump in it but not this time, I was nosey and investigated)

I think I mentioned in a previous post that Nora’s liver enzymes had been a bit elevated since the beginning of the year. We changed a few things and had hoped they would return to normal but the opposite has happened and now her AST and ALT are more elevated than they have been in a very long time. There are numerous things that can aggravate the liver but in Nora’s case the obvious reason would be long term TPN use even though she’s also on Omegaven. Maybe I’m just being stubborn but I just can’t help but feel there’s another piece to the puzzle, just because she’s on such a low dose of TPN at this point. But even on a low dose, TPN does have an accumulative effect.

What makes this elevation even more puzzling is that Nora’s Omegaven dose was increased a couple of months ago, so in theory, more Omegaven should have helped these numbers drop. But with Nora’s fat malabsorption challenges maybe the increase was too much for her liver to handle. Although the Omegaven is going straight into her blood stream and not through the intestines, could these elevations be due to a fatty liver? Who knows, I feel like I’m talking/thinking in circles. I’ll I know is that I do not like seeing these numbers continue to rise.

But ultimately this just reconfirms the need for us to try getting Nora off TPN all together again soon. At Nora’s last GI appointment the plan was to try a TPN break in the fall hoping that by then her weight will have picked back up again. Which it’s finally starting to slowly pick back up.

We took Nora to see Dr. Min Tian, our accupuncturist who practices traditional Chinese medicine, to get her opinion of what may be going on. Dr. Tian has played a big role in Nora’s care since the beginning and she has been a huge help with Nora’s diet. She provides a  good balance with her knowledge of the bodies’ natural rhythm and the the necessity of Nora’s extreme medical care. She thinks that there is too much fat build up in Nora’s liver, either from the higher Omegaven dose, from her diet, or both. So she recommended we do a natural liver flush with fresh melon juices. So we raided the health food store and bought every kind of organic melons they had and Nora gets to enjoy a fresh cup of juice twice a day.

Dr. Tian has proven to be right on the money in the past with her diagnosis before the medical testing results have come in. But regardless of the reason for Nora’s elevated liver numbers, we think she can benefit from a cleansing. I’ll be sure to share the outcome of the liver flush with fresh juices.

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.

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.

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!