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.

Nora has been quite the little social butterfly lately. She’s been having more playdates recently and I think I’m enjoying seeing her play and interact with other kids just as much as she’s enjoying it.

The butterfly theme seems to be a running thing around here lately. After we enjoyed raising the caterpillars we got Nora for her birthday so much we decided to give it another try. We took Nora to a little local nursery to “adopt” a little caterpillar. Nora decided to dress up for the adventure in her appropriate butterfly attire. And of course Smiley the caterpillar joined along for the trip.

We took our cute little swallowtail caterpillar home, named it Spotty because of it’s yellow spotted markings. Then we watched it eat and poop a lot for a few days, it cocooned and we watched and waited for 2 weeks until one day Spotty emerged as a beautiful butterfly.

Nora couldn’t wait to teach Spotty how to fly. She grabbed her butterfly wings and said “I have to teach Spotty how to flutter!” Then she proceeded to dance around the room flapping her arms saying “flutter, flutter!”

Look at that proud little face!

Nora’s flying lesson resulted in Spotty getting lost in the house for a few hours. Apparently swallowtail butterflies are ready to full on fly a lot sooner after cocooning than the pink lady butterflies we had. Although I worried a bit until we found her, Spotty’s extra stay in the house before getting released turned out to be a saving grace since the bug man came to spray outside that afternoon. It’s nice when unpredictable occurrences seem to happen for a reason.

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.

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.