Archive for September, 2009

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…..
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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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Happy Grandparents Day!


September 13th, 2009

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Happy Grandparents Day from Nora!

Nora is a very lucky little girl, she has not just 2 sets of grandparents but 3! (since both of my parents re-married) and 3 living great-grandparents who love her very much. We didn’t want the day to slip by without making a post in recognition of grandparents because they are so very special. Some of my happiest memories as a child are ones made with my grandparents and I know that Nora is making those happy memories as well.

Nora gets to see 2 sets of her grandparents often since we all live in the same town. We wish she could see her Grandaddy and Nanny who live in Kentucky more often but the distance poses a challenge since traveling hasn’t been kind to Nora. But we can’t thank her Grandaddy and Nanny enough for making the effort to visit as often as they can and for planning to join us again this Thanksgiving.

Nora is very much looking forward to the day when she gets to go up to Grandaddy’s farm and she is already practicing her farm skills. Nora’s favorite song to sing these days is Old McDonald and I must say it is pretty darn cute if I do say so myself.

click here to see Nora singing Old McDonald – http://www.youtube.com/watch?v=zXl1Zg0C-gU
(sorry the clip is so short, my battery loves to die when Nora’s being extra cute)

For the past week or so Nora has been pretending that her wagon turned upside down is her “tractor” and this one specific hat is her “farm hat”. Introducing Farmer Nora. :)

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HAPPY GRANDPARENTS DAY! WE LOVE YOU!

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