Archive for November, 2009

So Very Thankful


November 30th, 2009

This Thanksgiving was full of all of the things we are so very thankful for…..family, love, sharing, and of course Nora! My parents, grandparents and brother were so sweet and drove down from KY to join us. My sister and her family were also planing to join us but my niece Marin got sick at the last minute. :( We hope you feel all better soon sweetheart!

We only had a few days with my family so we made sure to make the best of our time together and had an adventure packed visit. Nora took her very first boat ride on the Wakulla River. She had a blast looking over the side of the boat to see alligators, manatees, turtles, fish and lots of different kinds of river birds.

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But as impressive as all those animals were, a little brown squirrel gave her the most entertainment. He was burying an acorn for the winter and Nora couldn’t stop laughing at it’s frantic digging and pounding the acorn into the ground. She was laughing so hard my grandparents heard her laughing from all the way across the park.

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Thanksgiving dinner was extra special this year, not only for the great company but it was the first year Nora got to eat a real turkey dinner and the same menu as the rest of us. Turkey, mashed potatoes, cranberry sauce, green beans (hulled) and pumpkin pie made with goat milk just for Nora by her sweet Mammie, yum! And it was even better that her tummy handled all of it great. :)
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After we stuffed ourselves we took Nora to walk around and see the Christmas lights at Dorothy B. Oven park. Nora is definitely going to enjoy Christmas this year more than ever and is already getting very excited about it.
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It was so great for my family to be able to join in the Nora fun. She is such a special little girl who we will forever be so very thankful for.

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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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Happy 90th Birthday Mamma Tom!


November 14th, 2009

This week was Nora’s great-grandmother’s 90th birthday. The family celebrated Mamma Tom’s special day last Sunday at Montana’s Aunt and Uncle’s house. Thankfully everyone was cold free and we were able to join in the celebration. It was the largest family function that Nora has been to yet and it was a wonderful time had by all to say the least. Nora rarely gets the chance to play with kids her own age, or any other age for that matter, so for her to be able to get to play with four of her little cousins ranging from 1 1/2 – 6 years old was awesome. Nora is quite the shy girl so we were curious to see how she would react around so many people but after a few minutes she warmed right up and let loose on the swing set.
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Nora got so tickled watching Lucus and Matthew rolling down the hill….
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The cousins took a break from swinging to go on a little tour to the “haunted shed” guided by sweet girl Olivia….
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Then back for more swinging!
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I didn’t think we’d ever get Nora off the swing set but Olivia lured her away with picking flowers and a stroll down the sidewalk.
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Spending time with family is so very special and is something that we don’t get to do as much as we would like to. But thankfully sweet memories made in one afternoon can keep the warmth in our hearts looking forward to next time.
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Happy Birthday Mamma Tom! We love you!

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A Heavy Heart


November 9th, 2009

Our hearts are heavy tonight for the Owens family. Gavin passed away last night after a very long fight. His passing is overwhelmingly heartbreaking but his family is finding peace in knowing that his suffering is over and that now he is in a better place.

I never thought that I could feel so much love for a little boy and his family who I never met. Gavin and his family are amazing in their love and strength and they have forever touched our hearts. Please pray, send positive thoughts, or whatever you do, to his parents and his sister Madison to help them through their time of sorrow and healing.

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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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