Archive for the 'Nora Medical Updates' Category

Nora KayLee Thomas is 4 Years Old!!

May 7th, 2011

Nora turned 4 years old last Wednesday, April the 27th. We had a small family celebration on her birthday then had a party with her friends last Saturday.

Tearing into her gifts on her bday morning.

Bubbles and balloons! :)

Nora’s big gift from us for her bday was a playhouse, which she has been having a blast playing in.

And when Saturday came for her big celebration with her friends, she had lots of fun being the playhouse hostess.

Time for presents……

and cake! (can you tell the cake is very serious business?) :)

And the most special gift of all was a visit from Nora’s surgeon and friend, Dr. Crooms.

Happy Birthday our sweet, darling Super Nora!! You are the light of our life, such a special blessing we have been given to be your parents. Love, Mommy & Daddy


Interesting Article

April 21st, 2011

My mom sent this article to me and I found it so interesting and exciting that I wanted to share. Even though the research is just in the beginning stages, down the road this could play a big part in helping with SBS treatment and diet. With so many complexities to SBS and other GI problems, the more intestinal knowledge we have the better chance for success.


Time flies when you’re having fun

April 15th, 2011

It’s hard to believe that Nora will be four years old in less than 2 weeks! I also can’t believe it’s been so long since the last blog post , it seems like these last 2 months have flown by faster than usual. There has been lots going on in the Thomas household and I happily report that it’s mostly been good. Besides Nora having a nasty double ear infection at the end of February with horrible GI side effects from the antibiotics there has been a lot fun and exciting moments.

We had some very special visitors last month, Nora’s Nanny and Grandaddy came down from Kentucky to build us a greatly needed laundry room (Thank You!!). Nora got in lots of good time with her grandparents and the visit was wonderful. Nora even helped out with the construction. :)

And of course while they were here Nora provided plenty of good entertainment of dressing up, dancing and strutting her silly self for them.

Nanny and Grandaddy even got to catch a Twinkle Toes class while they were here.

I love these big post-show smiles. :)

Nora took Nanny and Grandaddy out for a night of yummy seafood. Nora thoroughly enjoyed her red snapper and said she loved “eating at fancy restaurants”. Nora’s been eating out at restaurants more often these days, not too often but compared to never it seems like a lot. Even though her restricted diet and food allergies poses a challenge, as long as I bring her snacks and scope out the menu beforehand we’ve had pretty good success and she really enjoys the experience. When we’ve had instances where everyone else is eating something she can’t I think it’s been harder on me than her but I’m trying to learn to let worry go when she’s never known any different anyways.

After the big construction project we snuck in a quick run to the beach for the first time this year while Nora’s buddies Maya and Rachel were there on their spring break. Nora was so excited to head down to the beach she had her bathing suit on before sunrise and patiently waited for her buddies to wake up before busting into their room.

Lets go! :)

Last summer Nora wanted nothing to do with swimming in a pool or the ocean because she said it was “too big”. She still wasn’t interested in getting in the ocean but she was all about testing out the water in the pool at the beach. Now since she’s realized there’s nothing to be scared of she’s been a little sprinkler and kiddie pool addict and has been playing in it just about every afternoon that she doesn’t have her port needle in.

Watch out summer, here comes Nora! :)


Grandaddy’s Sauerkraut

December 20th, 2010

For Thanksgiving Nora’s grandparents from Kentucky came down to visit, which always makes for a very special holiday. My Dad has gotten into making his own sauerkraut recently and brought a jar down for Nora to try after learning about the digestive benefits of it. This was a new discovery for all of us and we were really excited to learn about it. But only sauerkraut made the traditional way has good digestive bacteria, most of the store bought is made with vinegar and does not posses the healthy benefits.

Grandaddy gave us a lesson on how to make traditional sauerkraut and of course Nora was eager to help. :)

We weren’t sure if Nora would like the strong taste of sauerkraut but she loves her “Grandaddy’s sauerkraut” as she calls it. She has wanted to eat some almost everyday since Thanksgiving. Maybe it’s the magic touch her intestines needed to get back on track. Whether it’s a coincidence or not, thankfully Nora’s pain and bloody stools have been more improved in the last few weeks than they have been since all of this started months ago.

Nora enjoying some of her Grandaddy’s kraut and beans with a big smile of enjoyment! (of course her favorite buddy Jingle Bear needed a plate too)

We think her feeling better is a culmination of the changes we have made to her diet, giving her magnesium on a daily basis, and taking her to acupuncture for specific motility treatments. We also took her to cranial sacral therapy, which a lot of people think is related to head issues (as it can be) but in simple terms it’s kind of like gentle massage for the organs to get their energy flowing properly.

We think cranial sacral work will be very beneficial to her  in the long run but she hasn’t warmed up to it just yet. Since Nora had to go through so many physically invasive procedures in the last few months, she has become overwhelmingly sensitive to anyone doing anything to her resembling a medical procedure.  But the therapist was very helpful and showed us some exercises we can do with Nora at home to help open up her system.

We had such a great time visiting with my parents. Even though Nora doesn’t get to see them very often she knows how very special they are and loves them very much.

Nora enjoyed showing them all around town and felt like big stuff taking Nanny and Grandaddy out to lunch while they were here.

and when it came time for Thanksgiving dinner do you think she was ready to eat??

She sat herself at the table a good 5 minutes before everything was ready and had to do a little early taste testing. :)


Trying to find balance

November 21st, 2010

Sorry for such a long time in between posts. I’ve gone to update many times but as soon as I try to start typing my thoughts get all jumbled and I just end up staring at a blank screen. I’ve been waiting for my thoughts to clear up but I think if I wait any longer Nora’s blog may never get updated so I’m just going to push through it and hope it turns out legible.

So after Nora’s contrast enema at the beginning of Oct. we learned that her entire large intestine is dilated with poor motility. When we first discovered that she had bacterial overgrowth back in Sept. it was thought that it was the cause of the dilation and poor motility but in fact it could be the other way around. But there’s no way to know for sure, kind of like the age old question….which came first, the chicken or the egg? Although it’s hard not to wonder, which came first really doesn’t matter, just getting Nora back on track is what matters.

Basically her large and small intestine have opposite needs at this point. Food needs to stay in her small intestine as long as possible for maximum absorption but food needs to clear out of her large intestine quickly so she doesn’t get backed up. Her large intestine not clearing out correctly causes her pain, bloody stools, creates a nice home for bacterial overgrowth and ultimately makes it more dilated and motility even worse. Even though Nora easily poops 5-7 times a day technically she is constipated because her bowels are not emptying out as they should be. When she had a regular abdominal xray in Aug. the radiologist’s note read “does this patient have constipation issues?”. At time we actually laughed and thought he was an idiot – who can poop so often and be constipated?!? Well we’re not laughing now and he obviously wasn’t an idiot.

Initially, when we finally learned what’s going on and how the needs of her small intestine and large intestine are against each other it was really overwhelming, well I guess it still is, we’ve just adjusted to it more. Completely changing the way we’ve been thinking about and feeding Nora for the last 3 and 1/2 years is a big adjustment.  All along we’ve been feeding her foods that will stay in her system as long as possible, even adding thickeners to slow it down and avoiding foods that go through her quickly. Which without motility problems that’s just what you want with SBS but now that she’s developed poor motility…..ok here’s where my mind starts to get boggled… can see our challenge. So now we’re trying to find the balance of getting food to stay in her small intestine long enough to absorb adequate nutrition but then quickly go through her large intestine. We have not found that balance yet.

Taking laxatives on a daily basis is usually the recommended treatment for poor motility but ultimately they make the problem worse because the colon starts relying on artificial stimulation and gets even lazier. With Nora still being so young we are hoping to only try laxatives as a last resort. So we’ve been trying different foods, supplements and treatments (which I will go into detail about with a later post)  to try to get her large intestine working properly. At this point we are going through lots of trial and error hoping to find the right combination of treatmetns. Nora is still having some pain and bloody stools on a frequent basis but it’s no where near as bad as when this all started a few months back, and some days are better than others.

Nora’s GI doctors want us to continue on this trial and error path as long as her pain is “manageable” meaning that she isn’t in constant pain as she was a few months ago. If we can’t get the dilation in her large intestine down and get it working properly then at some point her doctors will want to discuss surgery to taper down her large intestine. Obviously that is something we want avoid at all cost. Nora’s weight has been down since all of this started so her TPN calories have been upped and she is still getting some supplemental hydration fluids. She may need more TPN than she’s needed in a while to get her through this and that’s ok, we’ll take all the help we can get.

Now on to the brighter side of life…….Nora’s first trip to the fair! :)


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!


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