Gavin Owens

November 5th, 2009

I rarely ever post on the blog anymore, partly due to a lack of time and partly because Sarah keeps up with it so well and enjoys doing it. Tonight though I would like to mention something that has been on my mind a lot lately, a little boy named Gavin Owens and his family. We have been following Gavin’s blog at for a while and the poor little guy struggles. At the moment he is doing very bad and it looks like he may not be with us for much longer. Please pray for Gavin and his family as they go through this very tough time. As we know miracles can happen and so maybe with enough thoughts and prayers little Gavin can pull through and make it home again. Our hearts go out to Gavin and his family.


Another Butterfly Princess Halloween

October 31st, 2009

Nora is always full of surprises. For weeks she has been dead set on being “Rosie kitty cat clown princess” (from the cartoon Caillou) for Halloween. But when it came time to put on her costume she wanted nothing to do with the clown and cat part of the costume. You’re allowed to do that when you’re 2 1/2. :) So she decided to grab her tiara and butterfly wings from last year and emerged as the Butterfly Princess once again. Humm, I’m seeing a pattern here, princess is a strong common denominator….that’s our girl.

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Flash back to last Halloween…..look how much our little butterfly has grown…

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We didn’t take Nora door to door for a couple of reasons, 1) flu germs and 2) we didn’t want to tease her with collecting a bunch of candy that she can’t eat anyways. But none the less she still had a great time on a special Nora trick-or-treat route. The first stop was to our super sweet neighbors Chrys and Owen. They are wonderful neighbors who are well aware of Nora’s condition so they had a special bag of toys just for Nora.

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Then it was off to the Nora’s grandparents who both had Nora friendly treats waiting for her. An organic, sugar-free, gluten-free lollipop may sound like something that would taste like cardboard but surprisingly they are very tasty and Nora loves them.

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We gave her a few before Halloween to make sure she would do ok with them so she KNEW what she as getting.

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We hope everyone had a safe and Happy Halloween!


Thank you Nora

October 27th, 2009

Nora must have snuck on the computer and read my last blog post and thought that sleeping through the night sounded like a good idea. I hope I don’t jinx us by writing this but Nora has slept through the night without waking up for a bottle for the last four nights in a row. Not sure what prompted such sound sleeping but we’ll take it! Thank you Nora! :)

(I started typing this last night and didn’t get a chance to post it and guess what…..I jinxed us. But that’s ok, we still appreciate the four nights we got.)

Nora had a big adventure over the weekend down at the St. Marks coast. She has been to the beach a couple of times before but never wanted to even get one toe in the water. But this time she was ready……really, really ready! We went down there to see the annual monarch butterfly migration but Nora was only interested in the water. Thankfully it was sunny and warm enough to wade in the water. I think she would have gone for a full out swim had we let her.
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Nora had a blast checking out all the sea life in the shallows.
We even found a seahorse!

Click here to watch Nora wading in the water at St. Marks

Leave it to Nora to find a way to have fun with a medical mask. She is the queen of putting funny things on her head these days.
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Even though she’s wearing it a little different from the norm, Nora’s mask goes right along with her sweet, caring nature and nursing skills. Last week as I was cooking I dropped a pan lid on my toe and hollered out “ouch!”  Nora responded “are you ok mommy?” then started walking towards the medical supply drawer and said “here, let me get you a band aide.” That’s my smart, sweet girl. :)

Today is Nora’s 30 month birthday so she is now officially a full 2 and 1/2. Happy Birthday Nora, we love you!


Missing our long lost friend sleep

October 14th, 2009

Since our journey with Nora began two and a half years ago many of our friends have long disappeared. Of course we miss them but we have come to terms with the fact that our necessary lifestyle isn’t conducive to many and it comes with a good deal of stress and responsibility that is just too much for some people to deal with. Unfortunately this is a very common thing that happens when a family has a child with serious medical issues. But I have to say that the friend I miss the most is sleep.

Nora’s sleeping patterns are far from consistent and scheduled regardless of our efforts. Getting her to sleep on a regular nap and bedtime schedule isn’t possible because if Nora has to poop anytime in the near future she cannot go to sleep. Even if she is very tired and wants to go to sleep it’s just not happening. Like last night, we had numerous rounds of snuggling and bedtime reading and poor Nora was so tired but her tummy kept churning and churning and wouldn’t let her sleep. So finally at 12:45am she went to sleep exhausted, and so were we. Then once she goes to sleep there’s the whole other issue of her waking every 2-3 hours for a bottle. This is something Nora has done ever since she was a tiny baby, regardless of how much TPN she gets and regardless of how much she’s eaten during the day. We talked to Nora’s GI doctors about her nighttime eating at her short bowel clinic appointment earlier in the month. They said if Nora was a typical child at this age they would recommend the tough love approach and let her cry it out to get her out of this pattern. But since every calorie counts with Nora then we should just continue to ride it out for Nora’s nutritional benefit. At this point I don’t think my body even remembers what it feels like to not be sleep deprived. So we’ll dream of a full nights sleep and know that our dear friend will return one day.

Besides the regular short bowel tummy aches and poop issues Nora has been chugging right along lately and continues to play the staring role of Super Nora. She’s put on a lot of height recently and finally gained all her weight back from what she lost when she was off TPN for almost 4 weeks back in June. Her weight was pretty much at a stand still for a couple of months so a forth night of TPN was added a little over a month ago. One more night of TPN along with Nora’s appetite getting better has made a big improvement in her weight. She’s still in the lower percentiles, between the 10th and 25th percentile for height at 34″ and in the 5th percentile for weight at just under 24lbs, but she’s healthy and growing and at least she’s on the charts.

When we took Nora up to her GI doctors in Birmingham at the beginning of the month it was somewhat of an uneventful trip and thankfully they agreed to space Nora’s next check up out six months instead of every three months like we had been. They usually like to see their patients more often but agreed that it’s in Nora’s best interest to travel less often since it is so stressful on her system. Even though she did do much better during the trip this time with eating and pooping when she needed to, once we got home she had liquid stools for two days which resulted in blood in her stool but thankfully that only happened once. Even though Nora’s system usually gets out of whack after a trip I was a bit surprised this time because she really did travel so much better than usual. We stopped every 1-2 hours to let her run around and she was even such a good girl to tell us if she wanted to get out just to “play” or to “poop”.

Here are some pictures of Nora from our trip stretching her legs at one of our favorite rest stops on  the way to Birmingham where there’s lots of grassy areas to get some energy out.

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Another thing discussed at Nora’s GI appointment was taking her off Omegaven at some point and just have her on TPN as part of intestinal rehabilitation, meaning seeing if Nora can absorb enough fat from her diet to not need it anymore. She’s not quite ready for this experiment yet and the thought of it does make me a bit nervous. But when the time comes her weight will be watched very closely as we don’t want to lose another 5 months to gaining back weight that was already worked hard to gain originally.


A trip to the Museum of Natural History

October 4th, 2009

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We took Nora to the Natural History Museum a couple weekends ago and she had a blast romping around the grounds checking out the animals. Our imaginative little goose made a “cake” for the farm animals, (the stack of mason jar tops and a magnet she’s holding in her right hand) she would hold it out and tell them “I have some food for you”. :)

Click here to see Nora pet the sheep

Nora loves animals but she is definitely more interested in usually just looking at them more than actually touching them. But she couldn’t resist giving the sheep a quick pet even though she originally said “no way!” as you’ll hear in the video when her daddy asked her if she wanted to.
(if you want to see more new Nora videos just click the main Nora video link under blog categories)

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After checking out the farm animals and buildings we headed over to visit the native animals and walk the trail.

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We wanted to stop on the bridge to take a family photo op but Nora didn’t have time for any of that, as you can see she was leaving us in the dust. She had places to go and more exciting animals to see.

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Even though the bears were sleepy heads she still loved seeing them.
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I only posted a few of all of the animals Nora got to see, it was a animal fun-filled afternoon. Nora walked her little self out and fell asleep in my arms before we even got to the car.


Mitochondrial Disease Awareness Week

September 24th, 2009

This week is Mitochondrial Disease awareness week. One of the children who we follow closely suffers from this incurable disease. His name is Gavin Owens. Gavin is a precious little boy and his family is absolutely amazing in their strength and persistence to try to give Gavin the best life possible. Gavin has suffered so much and our hearts go out to him and his family more than we can express. Even though we’ve never met him in person I read his blog daily and my heart aches for him, his parents and his sister.

click here to read Gavin’s blog

click here to read about Mitochondrial Disease

Gavin’s family is raising money that will go to help find a cure for mitochondrial disease. Please help them in their fight by purchasing a t-shirt or an other item from their online shop. All proceeds will go to the United Mitochondrial Disease Foundation.

click here to go to Gavin’s online store

Here’s Nora modeling her shirt.

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Rain, rain stay away!

September 18th, 2009

It has been raining here everyday for over a week straight and thankfully we finally got a much needed break from it today. Since we don’t take Nora to “kid-friendly” inside places (a.k.a. germ factories) especially during flu season, outside adventures are our main source of out of the house fun.  So Nora and I took advantage of it and got out and enjoyed some fresh air at the Lichgate Cottage. Even though it was pretty humid and muggy we still had fun romping around the grounds and checking out the new circular path with a rainbow mosaic in the center.

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With Nora’s great imagination we’ve still been going on adventures even though we’ve been stuck inside a lot lately. She loves to dress up in her favorite hat and pretends to be all kinds of places. Here she is at the beach…..
the tissue paper was the sand, she grabbed her shades and a cup for her juice if she got thirsty while sunning. :) Nora gets very detailed with her pretend play and it makes me so happy watching her imagination grow.

Nora’s incisions from her port surgery are healing up very well. She was pretty sore for the first two weeks and continued to be leery of us changing her port needle and dressing even after it wasn’t sore anymore. But I think she realized with this weeks needle change that it really doesn’t hurt anymore and hopefully she wont have anymore anxiety about it. Which makes less anxiety for me too. Nora has always been very aware of her port, we talk to her about it openly and she knows that she gets her TPN through it. She knows that she had surgery and seems to understand a lot more than you would expect an almost 2 and a half year old to understand. She definitely wins the super tough and super smart cookie award in our family.


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