Archive for the 'Nora Medical Updates' Category

See ya 2009!


December 31st, 2009

Oh what a year it’s been……as I sit here on the last morning of the year thinking back on the last 12 months and watching Nora play with all of her Christmas toys it makes my heart smile to just observe the pure miracle of her.

Then she asks me to close her up in her new castle tent, I peek in the window to see what she’s up to and she sweetly says “I want you to go bye-bye now mommy” and then my ushy gushy heartfeltness turns into laughing out loud and amazement in what independence my little Nora already has. That independence became very apparent on Christmas morning when we heard “I want to do it myself” many times every time we would try to show her how to work one of her new toys….oh what a stinker. :)

Christmas Eve delivered a very special present for all of us, Santa Crooms, I mean Dr. Crooms came by to visit Nora and bring her a present between surgeries…..amazing…. is the only word that comes to mind. We are so very blessed to have him in our lives. Who would have ever thought 32 months ago on the day that Nora was born such a special bond would have been formed between Dr. Crooms and our family.

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To say that Nora loved her puppy from Dr. Crooms would be an understatement.

We know that Nora is a very special girl as well as a very special medical case. But we also know that Dr. Crooms has preformed many life saving surgeries and has probably saved the life of a newborn before. But we’ve always wondered why Nora made such a strong impression on Dr. Crooms for him to take such a personal interest but of course not wanting to be too blunt to ask him to explain. Well I think we got our answer when I called to wish him a Merry Christmas on Christmas day and thank him for taking the time to visit Nora. I was telling him how much we appreciated him being in Nora’s life outside of the medical world and he said “I will be a part of Nora’s life as long as I am around. She is such a special miracle and reminds us all of how life should be.”

Thank you Dr. Crooms, thank you with all of our heart and soul for saving Nora’s life and being such a wonderful, caring person.

Christmas morning

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So many presents for one little girl, a brunch break was required to keep up the Christmas marathon…..

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Sooo happy :)

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An afternoon tea party in her new PJ’s

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More Christmas celebrating into the evening and Nora helped with the cooking.
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christmas-2009-036.JPG We hope everyone had a very Merry Christmas and wishing you a very happy New Year!

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No surgery today, hooray!


November 20th, 2009

Nora’s port definitely has some issues but they are manageable for now and we’ll just keep using it as it is until it stops working which hopefully wont be anytime soon. The first issue is that her port is not flat against her chest but is in at an angle, so now we know to put the needle in at that same angle instead of straight on and that explains why getting it in has been an issue. After the initial x-ray was taken showing how the port was laying, we put a needle in and injected some dye to see what the catheter was doing. The catheter had recoiled back up the artery a good bit so instead of being at a gradual arch from her port over to her heart it’s at a sharp turn. So just like with a water hose things don’t flow as smoothly as they would if it were at a straighter angle. Anther thing going on with the catheter is since it’s recoiled and not hanging down in the big artery right above her heart, it’s now in a smaller artery and the end of it is up against the artery wall, so that explains why we can’t get blood return sometimes because it’s making a vacuum against the wall. But it does move around in the vein a bit so moving Nora’s position should move it off the wall enough to be able to pull blood. Thankfully Nora only gets labs drawn monthly so drawing blood wont be a weekly issue. Lastly, it looked like there was a bit of fibrous clot forming at the end of the catheter causing even more blockage issues. But the clot is still small and if it gets bigger it can be easily be broken up by injecting a certain solution.

So it’s far from perfect but it still works and no surgery was needed and that makes us all sigh a big sigh of relief. Dr. Crooms was with us every step of the way this morning and left it up to us whether to go in and straighten out the catheter now but we don’t want to put Nora through even a minor surgery unless absolutely necessary. He agreed with our decision and as long as Nora’s TPN can infuse with out occluding than that’s the most important thing. And now that we have a clear picture of what’s going on inside working her port should be much easier from now on, and less stressful. Even though there are multiple issues going on none of them are putting Nora in any danger, especially since we’ll continue to go by the golden port rule of not forcing anything in or out. If it doesn’t come with gentle pressure then we’ll know to give it a rest and try again later.

Since I know I’ll get fussed at if I make two posts in a row with no pics I’ll wrap this up with some funny pictures of our silly girl that have been taken over the past few weeks.

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Port Police – help!


November 19th, 2009

This may sound totally insane but I’ve always thought that Nora knows a lot more than a typical child her age should, even when she was a tiny infant her eyes expressed depth and wisdom. More than one person has commented that Nora is an old soul upon meeting her for the first time. She has always been very in tune with her body and other peoples emotions, she is very aware, of everything, even if it seems that she’s paying no attention.

The night before last, Nora is sitting at her table eating dinner, turns to me and out of the blue says:

“Guess what mommy?”
“What?” I reply.
“the police man is coming to look at my port”

There had been no discussions of police men or her port but this girl does have quite the imagination. So I question her on why a police man is coming to look at her port. She seems to ignore me for a minute and then starts telling Montana and I that her “port used to be on this side” pointing to where it used to be and that now “it’s on this side” while pointing to her new port like a spokesperson giving a lecture. Then as soon as the conversation started it ends and she turns her attention back to her TV show and there is no more mention of it.

Her comment was kind of amusing but also left me feeling a bit perplexed as to what brought it on. Well, she’s 2 years old with a big imagination, what’s to wonder? But now, two days later I’m thinking of her comment again after having to take Nora in to see Dr. Crooms this morning to have her port looked at.  Ever since Nora got her new port it has been a challenge to get the needle in right and the past few weeks have posed even more of a challenge. It is very finicky and even when the needle seems to be all the way in and dead center, getting a blood return is hit or miss. We tried 2 times yesterday and twice this morning with no luck of even flushing it let alone getting blood return so off to Dr. Crooms we went. He felt her port through her skin with a perplexed look on his face and said it could have flipped around under the skin. So she’ll be getting a chest x-ray in the morning. If it indeed has turned or flipped over she’ll be going in for surgery right away. It shouldn’t be nearly as invasive as the initial surgery was to put it in, but still surgery. We’ll hope for the best and really hope that she wont be having surgery tomorrow. But we’ll still have to plan for surgery in case that’s what needs to happen so no eating for Nora through the night.

While we’re in Dr. Crooms’ office this morning I asked Nora if he was the port police and she said “yes”.

I have had a lot of anxiety and feeling inadequate with Nora’s port being such a challenge lately. But to think there could be something wrong with her port and that it hasn’t been me doesn’t give me a sense of relief but instead makes me worry more. I’d feel a lot better if it is me and not her port.

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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 http://www.gavinowens.com 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.

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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.

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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”. :)

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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.
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Sweetness………

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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…..
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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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