With the fall season officially upon us we are looking forward to all of the fall time fun to come and looking back on Nora’s summer adventures.

Nora came a long way this summer with getting over her fears of the “big water” waves, sticky sand between her toes and getting all the way in big pools. Last year she just wanted to dip her toes in and sit on the steps but now she’s our brave little fish who mustered up the courage to let go of my hands and is practicing treading water.

Look Ma, no hands!

Painting a masterpiece while enjoying the sunshine.

Nora still needs help with the steering but after a lot of practice she has turned into a great pedlar on her big girl bike.

A very exciting step made this summer is Nora getting her own bed in her own room and actually sleeping in it!

Before a couple of months ago Nora had slept in our room every night for the last 4 years. With her awaking so frequently to eat and getting tangled in her IV lines at night it was just what needed to happen for her safety. But now that she’s getting more independent and is only hooked up to TPN three nights a week she’s sleeping in her room most nights that she’s not on TPN, or at least falling asleep in there before sneaking into our room in the wee hours of the morning.

When we took Nora to her GI appointment in Birmingham back in July, some of my family from Kentucky met us there to spend the weekend. The original plan was that Nora was going to have exploratory surgery and they were going to meet us there for sweet family support. But at the last minute Nora’s doctors decided that they wanted her to stay on the medicine that his helping her GI bleeding since she’s improved so much and hold off on procedures for now. So thankfully Nora just got to enjoy a very fun weekend with her grandparents, Aunt and cousin instead!

Nora was a super happy girl to see her family (and of course I was too!)
Nora and her cousin Marin are such sweeties together. Whenever we ventured out they were always holding hands, even just walking back and forth to our rooms and in the elevator.

We took the girls to the McWane Science Center, which if you ever find yourself in Birmingham I highly recommend going there, it’s mostly set up for kids fun but even us adults enjoyed all of the neat things to do and see.

After a day full of fun Nora was very over tired but too excited to settle down for a badly needed rest. Thankfully cousin Marin was there to save the day and got Nora to fall asleep by listening to her big cousin read.

Soooo sweet…..out like a light……

Getting to spend time with my family is always very special but the weekend was extra special since it also happened to be my Dad’s birthday. Nora was too tuckered out to join us for birthday dinner but she was ready for the after party to serve her Grandaddy some ice cream and fresh peaches….mmm…

Although we were very relieved to not have to put Nora through procedures on the trip and she is doing much better, we still want to figure out the source of her bleeding problem and find a permanent solution instead of keeping her on Carafate indefinitely. So since her Birmingham GI appointment we have taken her to Nemours Childrens Clinic for a second opinion. We are still trying to figure out the best path to take for Nora and I will post again soon with more details about it.

Nora’s been having some GI bleeding issues off and on for a while now, she’s had bouts of colitis before that have caused her to have blood in her stools before but never for this long or severe. Medication has helped but has not resolved the problem so she will be having some exploratory surgery soon in hopes to find the source of the bleeding.

Nora always runs on the anemic side but last month the blood loss in her stool caught up with her, she was feeling really puny and her numbers were pretty low so she needed a transfusion. Nora had quite a few transfusions in her younger days and has needed them after surgeries but in this instance the timing wasn’t as critical so we wanted to give her some blood from a known source. So after a family trip to the blood bank we discovered that her daddy’s blood is a perfect match to hers. Now that we know this Montana can direct donate for Nora in the future when needed and that gives us all a great level of comfort.

Besides the issues at hand and after the transfusion perked her up, overall Nora is doing quite well, her weight has finally started picking up again and she is growing taller very quickly. She is still having lots of fun adventures and is her happy, sweet self. She has mentally matured a lot in the past few months and is becoming aware and learning about her medical issues and thankfully has become more able to deal with the unpleasantness that can come along with them. After the procedures Nora had last year she developed some really extreme anxieties revolving around anything medical and BM related.

She was having such a hard time that at the beginning of the year Montana and I felt like we needed help ourselves in order to be able to help her better, so we started seeing a family counselor who specializes in children with chronic medical issues. The counselor is wonderful and has really helped us learn how to guide Nora to work through some of her issues. That’s not to say that we still aren’t working through daily issues but that seems to just come with the territory of Nora’s strong will, the developmental stage she’s in and her medical challenges. We are just happy to see her not being in so much panic mode and are really hoping all that we’ve been working on the last 6 months will help Nora cope better with the upcoming procedures. We just want our sweet little Super Nora to only worry about regular 4 year old stuff as much as possible,
like what books she’ll check out at the library

and how many fish Daddy may catch

and discovering how yummy ice cream is on a hot summer day


being a super silly chef

And just having fun.

And fun will certianly be the focus tomorrow for Nora is really looking forward to some 4th of July fireworks!

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

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.

http://www.nytimes.com/2011/04/21/science/21gut.html?em&exprod

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!

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.

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…..you 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!