Six Years Old


July 21st, 2013

We celebrated Nora’s 6th birthday at the end of April. It’s so hard to believe that my baby is already six years old! So much has happened in the last six years it leaves my mind spinning sometimes. There have been many hard times we’ve had to go through to get here but there have also been so many wonderful, amazing moments that outweigh all of the struggles. I find myself just staring at Nora sometimes with my heart smiling and just so very thankful for her sweet little life. Then I’m snapped out of my daydreaming when she says “Mom….why are you staring at me?!?”

Nora had been wanting a bouncy house for her birthday ever since she played in one last fall at the fair. So she got her birthday wish and she and her friends bounced away and had a great time.

There was one traditional staple of a birthday party missing, a birthday cake, but thankfully none of the kids missed it and her party was still just as complete of a celebration without the sugary carbs. Instead of a birthday cake she had birthday quiche because Nora has been struggling with d-lactic acidosis since the beginning of the year.

D-lactic acidosis is a type of intestinal bacterial overgrowth that causes some really horrible and scary symptoms. It occurs with short bowel syndrome when the small intestine cannot metabolize carbohydrates properly. The carbohydrates ferment in the intestines leaving an ideal habitat for bacteria to thrive on. The bacteria produce d-lactic acid (very different from l-lactic acid) that builds up in the body causing metabolic acidosis which can lead to neurological symptoms like slurred speech, dizziness, imbalance and lack of coordination, and when things get really bad the person can become unwakable and in a coma-like state. Unfortunately Nora had all of these symptoms and had to be hospitalized three times in six weeks earlier this spring after becoming unwakable and non-responsive. It was incredibly scary to say the least.

We never imagined that we would miss her port so much but we sure did during those hospital stays with all of the blood draws and IV’s that she needed. Nora was used to her port needle because it was all she had ever known and as long as the huber needle hit the port in the right spot there was just one poke and that was it. But venous sticks were totally new to her and her tiny veins are a hard stick and sadly to say there were too many times that she had to be stuck numerous times to get a good vein. Nora went through a period of being very stressed and anxious surrounding all of it. Thankfully she is used to it now and is coping with it much better, especially since she is still needing to have her labs checked every week or two.

D-lactic acidosis is a more rare type of short bowel bacterial overgrowth and surprisingly very unknown about in the medical community. It is often misdiagnosed and the problem can go on for a long time before getting it figured out. Thankfully we had read about it before on other short bowel blogs and after Nora’s first hospitalization and misdiagnosis of dehydration, we insisted a test be run for d-lactic acidosis. We requested this the first time but the hospital only ran a lactic acid test and that is not the same thing.

Nora is doing much better now but she is still struggling to kick it completely and has taken three rounds of antibiotics. In the past when Nora has had other types of overgrowth we had been able to avoid antibiotics and treat it with probiotics. But d-lactate actually can get worse with the more common strains of probiotics. Among a lot of other modifications to her diet, we have greatly reduced the amount of carbs she eats and changed her formula from Elecare to a lower carb formula. All of these changes are necessary to get the overgrowth under control but it also results in Nora getting less absorbable calories and nutrients. The bacteria inhibit her intestines from properly absorbing nutrients and since her intestines don’t properly absorb even when they are healthy, she has lost weight and goes through spells of having very low energy. She is already a small little peanut and was struggling to gain weight before all of this started so hopefully we will see some weight start coming back on her soon.

It’s terrible I’ve let Nora’s blog go for so long without a post! There has been so much more that’s happened in the last 9 months since the last update. I’ll try my best to make another post soon to fill in the blanks. We had to turn off the ability to leave comments on the blog because of obnoxious spammers constantly trying to promote their products on Nora’s blog. So for those of you who are still following our sweet little Nora or to those of you who may have just found her blog, thank you for checking in on her! :)

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Omegaven Story on NBC


June 7th, 2013

Omegaven is the IV drug that saved Nora from needing to have a liver transplant. She was one of the few lucky babies who the FDA approved to use the drug outside of the trial run by Dr. Puder at Boston Children’s Hospital. This drug is made from fish oil and should be available to every child who needs it but unfortunately it is still not approved by the FDA. There will be a report on Omegaven tonight on Rock Center with Brian Williams on NBC at 10pm EST about this very important issue. If you can’t watch it tonight, set your DVR’s because it is sure to be a story worth watching. The child featured in the story is Sam O’Connor who is also a child with short bowel syndrome that we’ve been following on his blog for many years. http://www.samoconnor.com/index.html

Here is a post we wrote in 2008 after Nora had been on Omegaven for a year.
http://www.norathomas.com/2008/08/15/omegaven-the-fish-oil-that-saved-our-little-girl/

We hope this story will spark more national news coverage for Omegaven and that the FDA will one day soon approve it for all who need it.

UPDATE

If you missed the airing of the story Friday night, below is a link to it.

http://rockcenter.nbcnews.com/_news/2013/06/07/18833434-drug-treatment-omegaven-that-could-save-infants-lives-not-yet-approved-by-fda?lite

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Nora’s Time


September 30th, 2012

We have news so big it’s hard to even believe….are you ready? Nora had her port removed! It’s so great I’ll say it again.
NORA HAD HER PORT REMOVED! :)

Her port was removed a little over three weeks ago. The port removal was a simple outpatient surgery with a small incision and a few dissolvable stitches under the skin. She was a bit sore for the first couple of days but she was back to running full force in no time. There is very little that slows her down these days. Nora has come a long way from the days of when she used to have to take frequent rests and struggled to keep up with her friends energy levels. Those days really weren’t that long ago in the grand scheme of things and she is certainly making up for lost time, now we struggle to keep up with her at times!

From the day of Nora’s birth she has had some sort of catheter running in her veins, she blew through numerous PICC lines until she got her first port at 2 months old. All of which brought a very serious risk of deadly blood infections but yet were also necessary to deliver the life supporting TPN that she needed until last December. So as you can see this news is very exciting for more than one reason. The fact that her body is supporting itself without TPN and/or hydration fluids is amazing on top of no longer having the foreign object in her body that posed an infection risk is very wonderful to say the least. Although I must admit that as odd as it may sound, at first it was a little scary letting go of our “security blanket”.

Up until a couple of months ago Nora still needed to get monthly blood draws for labs which we would pull from her port. But now she is so stable she will only be getting labs drawn every six months so there was absolutely no reason to keep her port in any longer. Even though her growth has been very slow since she came off of TPN her GI doctors feel very strongly that there is no need for her to go back on TPN. At this point we are actually taking her to an endocrinologist to asses her slow growth.

Somehow, someway Nora knew long before any of us did that she would be getting her port removed when she was 5 years old. Early last year way before any talk of getting her off TPN came up, let alone absolutely no talk of her port being removed had even been mentioned yet, completely out of the blue one day she looked at Montana, pointed to her port and said “when I’m 5, I won’t need this anymore”.  Her comment stuck with me because first of all she had never said anything about her port being removed before and secondly, Nora has known things before with no logical explanation of how she would know them. I’m not saying she’s psychic or anything like that, but there certainly have been quite a few very big coincidences, or she has a very heightened sense of intuition.  Whichever way you look at it, it’s pretty amazing. But she herself is pretty darn amazing. :)

Nora has become quite the busy bee. We officially started homeschooling her last month. When most people hear of kids being home schooled the first thing that usually comes to mind is the lack of socialization compared to traditional schooled kids. That was the first thing that came to my mind and we did not want that to be an issue for Nora and made sure it certainly is not. We are involved in the local homeschool group that meets weekly on top of having a lot of extracurricular activities and opportunities for the kids to get together in a fun and creative environment. Nora loved gymnastics so much in the summer session that she’s now taking classes twice a week for the fall session. She’s also in a weekly music and drama class and she goes to a class for homeschooled children at the Tallahassee Museum every other week. She loves meeting so many new kids and is really enjoying learning in so many different environments.

I’ll wrap this up by mentioning a book that my cousin Emily gave Nora many years ago called Ruby In Her Own Time. It’s always been one of my favorite special books and although the story is simple, it’s very reflective of Nora’s life. Ruby is a little duckling that did things in her own time instead of at the typical pace of the other ducklings. But when she finally spread her wings she flew farther and wider than all of the other ducklings. Now it is Nora’s time to sore and she is flying far and wide above the clouds, just like Ruby.

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Ballet and Gymnastics!


June 25th, 2012

Nora started ballet and gymnastics classes a couple of weeks ago and she is loving it. She goes to each class once a week and says she wishes that she could go everyday. The classes are an hour long each and for a little girl whos energy used to be far below a typical childs so far she has had no problem keeping up the pace along with all of the other 5 year olds. Here she is waiting for the first day of gymnastics to start. She was so excited she could hardly contain herself. :)


The only other class Nora has ever been in was a toddler ballet class which was with parent participation. In these classes she is all on her own with the teachers and other kids she has done great with following instructions and being confident all on her own. Until she dived right in we weren’t sure how it would work out since Nora and I have been together all day everyday, so we are thrilled that she is being so independent. I can at least sit on the side lines and watch the gymnastics but parents aren’t even allowed to watch in her ballet class. Needless to say I had a harder time with this on her first day than she did and it’s a good lesson in independence for me just as much as her, maybe even more so. :)

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Finally, a post!


May 28th, 2012

I can’t believe I’ve let Nora’s blog go for so long without a post! But we’re still out here moving along and we have some very exciting things to report that have happened since our last update.

Our Super Nora turned 5 years old last month on the miraculous date of April 27th. It’s hard to believe she’s 5 already. She has gone through so much and has come so far in her first 5 years of life that I am overcome with so many feelings that all result in overwhelming thankfulness and joy for our little sweethearts life.


These are Nora’s super excited poses from when we took her to Build A Bear on her birthday.

Which was preceded by Nora’s first time around the race track in a go cart.

On your mark, get set….

GO!
(even though Nora looks as though she’s sliding down into the floorboard, she was safe and having a really fun time) :)

We celebrated Nora’s actual birthday day with just the three of us having a super fun day of surprises we had planned out for her. Then the weekend before her birthday we celebrated her special day with a party of friends and family.

Every single one of Nora’s birthdays has been a very special day with a huge reason for celebration. But her 5th birthday felt extra special….almost like a sense of “we made it”. Ever since Nora was born, getting her to the 5 year mark strong and healthy has always been like an unspoken goal. To reach that goal with how well she is doing at the moment fills our hearts with so much joy….like we can take a breath and know that she’ll be alright, no matter what challenges may come down the path.

Not only has Nora come a long way in the last 5 years but especially in the last six months she has made some huge leaps and bounds in two areas we’ve been working towards for a very long time. It’s really exciting….are you ready?  Drum roll please …..Nora has been off of TPN for six months and has been doing great!!! AND she is finally potty trained!!!

After getting Nora down to being on TPN for only 2 nights a week for a few months her GI docs moved her to hydration fluids a few nights a week. Then after being on hydration only for 2 months we gave it a trial run with no IV’s at all, she was able to keep her hydration all on her own and keep her weight. It’s been 4 months now with no IV’s of any kind and she’s doing really well. She has had more consistent energy than ever before, she actually has a LOT of energy. She hasn’t gained much weight but she is holding her weight up and she’s growing taller. Her GI docs think she’s doing great, and we do too, and are talking of having her port taken out soon.

After over 3 years of potty training, Nora finally giving up her dependance on diapers was a huge turning point in her health. Since she has been using the potty her issue with bloody stools and horrible frequent tummy aches has completely cleared up. We had been suspecting that she was causing herself a lot of irritation from holding because of anxiety of overflowing the diaper, then stopping and not completely emptying her bowels but she refused to use the potty no matter what we tried. She had a love/hate relationship with diapers that caused her a lot of anxiety and now that she finally kicked the habit, not only is she feeling much better physically but has a lot more big girl confidence.

Now for some fun Nora highlights that happened since our last post.


Nora joined the YMCA soccer team last fall.


Rode her first pony!


Was the cutest little chicken ever for Halloween. (Ironically she came down with the Chicken Pox not too long afterwards but thankfully it was a mild case and Nora came through it resiliently)


And got to play in the snow for the first time!

I really hope to be able to keep Nora’s blog updated more often and plan to be sharing more good Nora news soon. :)

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Goodbye Summertime


September 27th, 2011


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.

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A Perfect Match


July 3rd, 2011

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!

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