Just Nora

October 20th, 2010

With Nora’s complex medical issues sometimes I feel like she is defined by her condition with our lives being so consumed with it. Daily routines and outings all revolving around poops, tummy aches, special diet, plenty of down time to rebuild her energy, doctors appointments, etc. Of course her medical issues and experiences are a big part of who she is and who we are. But she is also a sweet hearted, smart, fun loving, typical three year old who just likes to be silly and happy and enjoy life. Even when she is going through a hard time or not feeling the best, she still is up for anything and we strive to give her the freedom of enjoying life and just allowing Nora to be Nora. So that’s what this post is about, just sharing sweet and happy Nora moments with no medical mumbo jumbo.

Nora loves the tire swing at the park.

and she loves dressing up Aunt Jenny’s doggie. :)

She especially loves being silly and making silly faces.

She’s our little nature lover. She loves playing outside and finding little buddies.

She is a great yard work helper. And she is cute and fashionable while helping. :)

And of course she loves spending time with her best play buddy Maya.


Sleeping Beauty

October 9th, 2010

There’s a lot to catch up on since my last post. After Nora’s clean out from the colonoscopy prep she had a really good couple of weeks with hardly any tummy aches. Then they returned with a vengeance so then it was time to go to plan B and try the Flagyl, which is  a strong antibiotic to try to get the overgrowth under control. She seemed to handle it fine at first with no additional intestinal aggravation and she even felt better for a few days.

But then after being on the Flaygl for 4 days she became extremely tired and was taking longer more frequent naps. It’s usually hard to get Nora to take one short nap a day let alone two naps for 2hrs or more. She also wasn’t wanting to eat or drink very much. We were getting concerned but from what we had read and talking with her doctors we contributed it to the antibiotic itself on top of the dying bacteria in her system making her more tired. But then last Thursday she fell asleep at 5pm and didn’t wake up until 8am the next morning but only long enough to come out to lay on the couch to fall right back asleep again. At this point we were extremely concerned, had doctors on the phone and her home health nurse on the way when she pooped a huge puddle all over herself and was so out of it she didn’t even wake up. So off to the hospital we go. Thankfully her doctor called ahead to pre-admit her so we didn’t have to go through the ER and went straight to a room and hooked up to IV fluids.

Her blood pressure was low and her respiration was up but no fever. While waiting on her labs to come back we were suspecting d-lactic acidosis since she was not able to be awakened and she had a few dizzy and stumbley spells the day before. With all of the bacteria dying off in her intestines and poor motility not moving it out properly, toxin build up seemed like a suspicious culprit. Her labs came back showing she had a low CO2 level which is usually a sign of dehydration. After being on hydration fluids for a few hours Nora finally woke up after sleeping for pretty much 21 hrs straight and her vitals were getting back to normal. Her blood acidic level was normal but d-lactic acidosis wasn’t ever confirmed or ruled out since she never passed stool after the lab orders for cultures were written.

Not being able to wake Nora up was incredibly scary. Even though she was getting TPN during those days preceding this episode her little body still got very dehydrated very fast.

But after she awoke and got to feeling better she strutted her stuff up and down the pediatric floor hallways getting lots of “you’ve gotten so big!” from her familiar nurse buddies. We never like to have to take her to the hospital but it’s always nice to be greeted by smiling familiar faces and luckily Dr. Patterson, Nora’s NICU doctor, was on call while she was there and it’s always nice to see him. Ironically Nora chose to watch Sleeping Beauty all on her own accord from the hospital movie library during her overnight stay and has become quite a fan of the movie.

So the next morning she was discharged with IV fluids to supplement until she got her fluid intake back on track, orders from her GI doc to stop the Flagyl and a plan to have a barium enema done in a few days to confirm that nothing structural was going on causing her abdominal pain. As soon as she recovered from her dehydration episode and started eating and pooping regularly again her pain returned. As much as we hated to put Nora through having a barium enema it was time to try to find more answers.

The barium enema showed no concerning loops or partial obstructions thankfully but what it did show is that her entire large intestine is wider than it should be instead of just a dilated section. I think I will stop here since I feel I have already written a book and we are still waiting to have more in depth conversations with her GI doctors about the possible cause and solutions.

But the last 4 weeks since the last Nora update haven’t been all bad. Nora’s Uncle Kia got married to a wonderful lady named Catherine and thankfully Nora was feeling up for the job as their flower girl on the day of their wedding. She had a great time and took her duty as flower girl very seriously.

and kept Catherine’s bouquet safe while listening very intently to their vows….

Nora even met some new friends and had a blast sharing butterfly wings and dancing it up with them.

Kia and Catherine’s wedding day brought them a sign of good luck with a rain shower and of course Nora couldn’t resist splashing in the water puddles. Although she did know to raise her dress before jumping in. :)

Congratulations Kia and Catherine!
We love you both very much.


Recognition of a GREAT Mom

September 9th, 2010

I usually leave these posts to Sarah but she will never write about this (she is to modest) so I am going to share and embarrass her some.  :)

My lovely wife who puts ALL of her time into keeping Nora healthy and thriving and also finds the time to help others in need was nominated by our home health care company, Barnes, for the Lyn Howard Advocacy Award.

Here is the email they sent her….

“We received this email below and immediately thought of you.  We would like to nominate you for this award.  You have been so instrumental in sharing with us and helping us to better help our patients as well as being such an advocate to others through your blog and website information. Please click on the link below, and read more about it.  I won’t proceed without your approval, so please let me know what you think……

Lyn Howard Advocacy Award Nominations Being Accepted

It’s time to nominate a consumer, caregiver or a family member for The Lyn Howard Nutrition Support Consumer Advocacy Award. This award, named in honor of A.S.P.E.N. member and Oley Foundation co-founder, Lyn Howard, MB, FRCP, acknowledges one patient/family member/caregiver who has advocated for other patients, families or caregivers of consumers who require parenteral (PN) or enteral nutrition (EN). Advocacy efforts include such activities as lobbying for legislation to improve care or reimbursement, developing educational tools, fundraising for PN or EN research, starting or sustaining support groups, being a consumer advocate, or teaching others about PN or EN. Nominations are due by October 15, 2010. Visit the A.S.P.E.N. website for more information.”

In all honesty I think we both feel there are other people more deserving of the award, that do much more for the overall PN/EN community, but I think that the nomination in itself shows what a great job Sarah does as a mom and caregiver to Nora, as well as a shoulder of support and provider of information to others in need. She is a special woman and I am glad to see her recognized for her good heart.  Congratulations honey, you deserve it!


Bacterial Overgrowth

September 8th, 2010

Nora had her endoscopy and colonoscopy last week and it was found that the culprit of her pain and bloody stools is bacterial overgrowth in her large intestine. Maybe I should rephrase that, the more specific cause of her severe symptoms is the intestinal dilation and lack of motility which was caused by bacterial overgrowth. Bacterial overgrowth is usually referred to as SBBO for “small bowel bacterial overgrowth” because it is more commonly a problem in the small intestine but it does occur in the colon and that is where Nora’s is. This is new news to us so we are still learning.

Bacterial overgrowth is a very common problem with SBS where the good bacteria in the intestine needed for healthy digestion are over taken by bad bacteria. The overgrowth causes fermentation of food in the bowels which leads to dilation from the fermentation process and the dilation leads to poor motility or “floppy colon” as Dr. Dimmitt referred to it. Then irritation and bleeding are caused by the poor motility and the bowels not being able to eliminate all of the fermenting stool.

Thankfully Nora’s small intestine looked really good and healthy with no overgrowth or dilation. We were so relieved to hear that because since her small intestine was the part that was resected her doctors were thinking that her problems were coming from the resection sites.

Although overgrowth is a common SBS problem we were a bit surprised by the diagnosis because Nora didn’t have any of the typical symptoms of overgrowth: diarrhea, vomiting, decreased appetite, excess gas. Maybe because her overgrowth is in the colon the symptoms differ(?).  Without these symptoms as a red flag, it appears that the overgrowth has been brewing for a while by the amount of dilation and irritation. :( I am feeling quite guilty for backing off on Nora’s pro-biotics in the last 6 months or so and can’t help but feel it contributed to the problem. Nora’s been on pro-biotics pretty much since the beginning but I started backing off and only was giving them to her every now and then because it seemed they were making her stools looser. Since I backed off the pro-biotics her stools thickened up and we thought she was doing great.

The typical treatment for overgrowth is antibiotics which wipes out all of the intestinal bacteria, the good and bad. Nora’s GI docs usually treat with anti-biotics first and then re-establish the good bacteria with pro-biotics. Since Nora has always gotten colitis from anti-biotics we’re trying a double dose of pro-biotics first and if that doesn’t take care of it then we will go the anti-biotics route. Diet is also a big part of getting overgrowth under control. The bad bacteria feed on sugars and starches so we will continue keeping Nora on an even more restricted diet than usual.

After feeling pretty puny for a couple of days after her procedures, thankfully Nora now seems to be feeling much better even than before her procedure. Even though the clean out was unpleasant and hard on Nora, it seems having her system completely cleaned out was a really good thing for her. Getting all of that festering, rotting stool out of there really did her some good. (sorry for the gross adjectives but it is what it is). Now hopefully we can just get the overgrowth under control before the poor motility allows it to build back up.

Pfffft to you bad bacterias!

Now for the good news….Nora’s small intestine has now grown to 25cm!!! She started off with only 4.5cm, it had grown to 16cm last spring and now she’s at 25cm – aww yeah baby! :)


Ready for Answers

August 25th, 2010

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! :)



August 17th, 2010

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. :)


“I love my new friends!”

July 21st, 2010

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)


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