Archive for the 'Nora Tidbits' Category

What a Year!


December 31st, 2008

Goodbye 2008! It’s been a year full of ups and downs with many challenges along the way but overall I’d say it was a big success for Nora. In the past year our little baby has grown into a little girl. I can’t believe how much has happened this year. Just to name a few highlights of the year Nora….

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Nora’s second Christmas was very special. Her NeeNee, Mammie and Pappy came over Christmas morning to watch her open gifts. As she’s in the midst of opening presents a very special guest rings the door. Dr. Crooms! Wow…..we were so surprised, and I think we still are. Dr. Crooms is Nora’s surgeon who saved her life when she was just a few hours old. Soon after their first meeting Nora grabbed a hold of Dr. Crooms heart strings and never let go. Even though we only see him every few months they have a very special connection. Dr. Crooms is a very busy doctor with a lot of patients and we are so very honored that he took the time out of his Christmas day to visit with us and bring Nora a gift. There is no denying what a very special little miracle Nora is and I think Dr. Crooms’ reaction to her success is a affirmation to that. I think our expressions say it all. :)
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On Christmas Eve Nora ate her first “real” green bean. She has tried baby food green beans before, which she immediately spit out and said “yuck!” But this time she said “yum!” and ate it up. Unfortunately her short bowel didn’t like it as much as her taste buds and it came out undigested the next day. But at least it stayed in her system for almost 24 hours and it didn’t give her diarrhea which usually happens when she eats something new that doesn’t digest. Even though the green bean didn’t digest I still see it as a step in the right direction since her system held on to it for a little while. (either way she looked darn cute eating it)
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Before dinner Santa Nora took a ride in a two dog open wagon instead of a one horse open slay. The details were a little different but she still delivered a big package of joy!
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Every little girl wants a pony for Christmas! Thank you NeeNee, Papaw Don, Aunt Jenn and Uncle Chad!
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She was a little intimidated by her horsey at first and just wanted to pet and kiss him. But by Christmas evening she was ready for her first ride.
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Giddy up!
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We say goodbye to Christmas with a walk through the lights at Dorothy B. Oven park.
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Click on the links below to see video clips of Nora’s Christmas lights adventure.

Christmas lights at Dorothy B. Oven
More Christmas lights at Dorothy B. Oven

MERRY CHRISTMAS! WE HOPE EVERYONE HAD A WONDERFUL HOLIDAY SEASON! THANK YOU FOR ALL OF YOUR LOVE AND SUPPORT. LOVE IS THE BEST GIFT OF ALL.

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Getting Ready for Santa


December 16th, 2008

I can’t believe Christmas is less than 10 days away. Nora has been having lots of fun playing with the tree ornaments and looking at the sparkley lights. I can’t wait to see her reaction on Christmas morning now that she’s getting to be such a big girl. She’s so inquisitive and thoughtful about everything she does. Here’s a little video clip of chatty girl Nora talking to the ornaments on the tree and showing them to her toy duckie.

http://www.youtube.com/watch?v=gBS4S2k_Pn0

Nora was a good helper when we decorated the tree the other week. She likes to take the ornaments off more so than putting them on but overall she’s been a very good girl with the tree.
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Nora has been doing great on the decreased amount of TPN. She’s been on the lesser amount for almost 3 weeks and she has gained 12oz since the decrease! Her little body isn’t the only thing growing. Nora’s vocabulary amazes us everyday. She can say pretty much anything she wants to. She has learned how to say “thank you” and “you’re welcome” and when it is appropriate to say it. And the other day she turned to me and said “hi mama, how ya doin?”.

Nora loves to be outside, she’s such a little nature girl. Here she is enjoying her first wagon ride.
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NeeNee’s doggies joined in the wagon riding fun too!
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She would have rode around in the wagon all day if we had the energy to keep pulling her around the yard. The faster and bumpier the ride was, the more she liked it. Every time we’d stop she’d say “more, more!”. After seeing how much she loved it, a wagon is now on her Christmas list. (but a less heavy duty one) :)

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A Long Overdue Update


November 30th, 2008

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Where to start…so much has happened since our last post. Some very good and exciting things have happened. Nora got to meet her great-grandparents (on her mommy’s side) for the very first time, Nora finally made it up to 20 pounds and her TPN was reduced with a plan put in place to keep reducing it. (yay!) Then the not so exciting events that occurred was a night in the hospital with a mystery fever and Nora will no longer have her wonderful nurse Virginia :( . It’s been a mixed bag of nuts the past few weeks but overall things are going very good.

Virginia has been Nora’s nurse since the day we brought Nora home from the hospital. Sadly Virginia is no longer working for our home health care company. Monday was her last day and the last time we had her help to change Nora’s port needle and draw labs. Until a nurse comes along that brings us as much comfort as Virginia then we will be doing these weekly duties ourselves. Virginia has grown to be much more than a nurse to our family. She’s a wonderful person and friend and has always gone above and beyond for Nora. Loosing her as Nora’s nurse has been very hard for both us and Virginia. It was not Virginia’s choice to leave but a result of downsizing because of this wonderful state our country’s economy is in. Of course we’ll still stay in touch with Virginia, but now instead of Nurse Virginia she’ll be Aunt Virgina.

Nora spiked a fever of 102 last weekend so off to the hospital we went where it rose to 103. This was Nora’s first hospital admittance in over 15 months. I guess we had rode out our luck long enough and it was time to pay our hospital dues. Obviously with Nora having a port our first fear was a line infection even though her temperature pattern and temperament didn’t allude to that. But she wasn’t showing any signs of a cold or a tummy bug either, the only symptom was a temp. and she was very tired. Her initial labs came back off just enough to make us scratch our heads, not showing a raging infection or strong viral signs but definitely a little off pointing in both directions.

The usual protocol at the hospital for kids with central lines who come in with high fever is to pump them with heavy duty antibiotics right away just to be safe. We were torn on whether to wait on the antibiotics because if it was a line infection we certainly didn’t want to give it time to get worse but we knew that antibiotics, especially the kind they give for a line infection, would tear up Nora’s system and she’d probably end up with bloody stool and a whole new set of problems like every other time she’s ever had antibiotics. Thankfully the nurses and doctors were well aware of Nora’s situation and didn’t push us. It was nice that they trusted us as parents so we didn’t have to fight them on the antibiotics or when we told them that no one touches Nora’s port line but us. We were nervous about chancing it but luckily her blood culture never grew anything.

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So hospital stays are never fun but at least this visit went better than expected. Nora has been extra shy and leery of new people lately so we were expecting an unhappy girl at the hospital but thankfully Nora saw it as a holiday and enjoyed playing in her “monkey cage” as we call the toddler hospital beds. Nora’s fever lasted almost exactly 24 hours so it must have been some sort of bug. Little ones get mystery fevers all the time but when a central line is involved we just can’t take any chances. This is why we are so paranoid and protective of Nora. When she has a fever we have to take her in to be safe but then just taking her to the hospital is putting her at even more risk to other sicknesses. Like the merca virus which we were told was the reason why the pediatric floor was almost at full capacity. great…..

Now on to the good news! Nora had her Shands clinic appointment the other week. The doctor she saw had not seen Nora since she was 6 months old so to him she was pretty much a new face. Before even examining her he commented on how good she looks just as a general healthy looking child. As he’s reviewing Nora’s chart and we are telling him how much she eats by mouth, he had to stop the conversation to confirm that there wasn’t a typo in her chart. “Is this right? Nora only has 4.5cm of small intestine?” “Not a typo!” we happily replied. So all in all he was quite impressed with our little miralce girl. Since Nora reached 20lbs in the time frame her main doctor had wanted her to be 18-19lbs, both doctors agreed that she is consuming enough calories by mouth and gaining weight so well that they reduced her TPN. She went from getting 320mls over 18hrs to 270mls over 12hrs. As long as she continues to gain weight then her TPN will be reduced by 15% each month until she’s at 0mls if all goes well. Keep your fingers crossed! :)

I saved the best part for last…..Nora’s second Thanksgiving was a wonderful one that included a very special visit from her grandparents and great-grandparents from Kentucky. As much as we have wanted to get Nora up to meet her great-grandparents, traveling 12hrs with her just hasn’t been a possibility yet and with them being 81 years old it’s not easy for them to travel either. My Dad’s parents have always been a big part of my life so this was a very special time for all of us to get together. They came into town a couple of days before Thanksgiving so we had some time to enjoy some outdoor adventures to some of Nora’s favorite spots.

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Nora with her Great-Granddaddy, Nana, Nanny and Granddaddy at Lichgate Cottage where we celebrated Nora’s 1st birthday.

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Nora was a great tour guide and showed her grandparents all around, making sure not to miss pointing out any sticks or flowers!

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Nora had a great time checking out acorns and berries with her Granddaddy. Nora is one nature loving little girl. Get her outside and she’s happy!

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Then of course we had to take Nora’s grandparents to meet her duckie friends at Lake Ella. It was a nice way to walk off our Thanksgiving dinner.

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Thank you so very much Nanny and Granddaddy for bringing Nana and Great-Granddaddy down to meet Nora!! We love you very much and miss you already!

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A Happy Butterfly Halloween


November 2nd, 2008

Nora had a wonderful 2nd Halloween….all treats, no tricks!  Super Nora turned her cape in for wings and fluttered around as Nora the Butterfly Princess this year. Get ready for lots of pictures! :)

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Nora had a lot of fun playing with her pumpkins for the past few weeks. But then when she realized that we can take their “guts” out and put faces on them it took the pumpkin fun to a whole new level.

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After getting the pumpkins ready to greet trick-or-treaters Nora emerged from her cocoon as Nora the Butterfly Princess! We went for a little stroll around the neighborhood hoping to see some other trick-or-treaters but I guess we were too early. Nora had a great time just walking around and playing in the front yard.

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Thanks for celebrating Halloween with us Aunt Jenny! (a.k.a. mommy’s childhood best friend)
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Nora couldn’t get enough of sugary candy. We figured it’s Halloween, why not?!? ……..just kidding, just a little Halloween trick. :) Nora doesn’t even realize that candy is for eating, she just enjoys playing with the crinkly wrappers and sorting the colors. But she did get to enjoy some short gut friendly treats when we continued the Halloween fun by trick-or-treating at the grandparent’s yesterday. Nora shared some rice puffs with Mammie (formerly Grammy). Nora has lovingly renamed both of her grandmothers, Grammy (Montana’s mom) is now Mammie and NeeNee (my mom) is now Nana. The grandfather’s names remain unchanged until further notice. :)

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Then we’re off to Nana’s garden for some butterfly fun with the flowers!

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We hope that everyone had a safe and happy Halloween!

If you’d like to see Butterfly Nora in action just click on the video link on the left side menu at the top.

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A Perfect Day for Recognition


October 27th, 2008

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I started typing this post earlier in the day and had originally titled it “One and a half” because today is Nora’s 18 month birthday. But then it was brought to my attention that there is an article in our local news paper today about Nora’s wonderful surgeon Dr. Crooms recognizing him for his technique and skills in microsurgery. (Click here to read the article) What a perfect article to appear in the paper on Nora’s special day! Anyone who knows us personally or who reads Nora’s blog regularly knows that I can’t mention Dr. Crooms’ name without acknowledging him as the wonderful surgeon and amazing human being who saved Nora’s life. He is a very caring man who has preformed many amazing surgeries but holds not one strand of ego.

Statistically Nora had less than a 1% chance of survival with the overwhelming amount of dead small intestine that had to be removed due to midgut volvulus (kink in the intestine). The volvulus occurred in all three sections of her small intestine and only a total of 4.5cm was able to be saved. If Nora had not been in such critical condition they would have Life Flighted her down to Shands Pediatric GI in Gainesville for the surgery. Thankfully Dr. Crooms was on call the day Nora was born and now here she is 18 months later…..healthy, happy and spreading the Nora love. :) Dr. Crooms wrote in his OR report that he didn’t think that Nora had a chance of survival either way but did the surgery anyways to give her family a chance to have some time with her. Thank you Dr. Crooms for thinking with your heart and knowing that miracles do happen.

Well Nora decided to stay up and party very late on her birthday so I will need to finish writing the update on our big girl tomorrow but I didn’t want the day to slip by without posting our gratitude to Dr. Crooms. But with that said, my intentions to keep Nora’s blog updated are good but often late so just in case…..she’s doing great. :)

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Punkin Fun!


October 9th, 2008

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We took Nora to the pumpkin patch the other day and she had a blast picking out pumpkins, or as Nora pronounces it “punkin”! She ran around laughing it up at all of the punkins as if they were telling her jokes only she could hear. :) I guess her excitement was contagious because we ended up getting four pumpkins, two baby size and two bigger ones. She is so crazy about the baby one she’s holding in the picture above. She even gave it a hug today while saying “hug”. I swear she’d sleep with it if we’d let her.

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Below are some little video clips of our adventure. Just click on the links to watch. :)

http://www.youtube.com/watch?v=sEKZK2hoGVo

http://www.youtube.com/watch?v=vpxoUQBefGQ

http://www.youtube.com/watch?v=WeIJXv8oKUU

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Many New Firsts for Nora


October 6th, 2008

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Sorry for the lack of Nora updates lately, my computer crashed but now I’m back up and there is a lot of Nora news to catch up on. Nora has been a busy little girl the past few weeks and she has had a lot of fun and exciting new experiences! In attempt to not to make a mile long post I’ll write this in a little recap format.

First Tea Party!

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Time for tea! Nora made an excellent tea party hostess for her first tea party with pouring sound effects and all. :)

First trip to the Bookstore!

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Nora loves books, taking her to the bookstore for the first time was a very exciting event. When we first walked in the door she squealed with delight upon seeing sooo many books in one place! She didn’t care what section we were in, she was in book heaven just to be there. Nora’s first trip to the bookstore was a big milestone in public outings. We have been taking Nora more places recently now that she’s older (but not too many) but still being germaphobic with obsessive hand wiping and always going on off times when there is less of a chance to be around a lot of people. Keeping Nora protected from the germs of public places has been hard at times and honestly sometimes saddening to not be able to share her with more of the world but it is a necessity to keep her healthy and out of the hospital. But with that said, not taking outings for granted sure makes these times so much sweeter and a cause for celebration.

First New Potato!

Nora has been trying a lot of new foods lately and tolerating most of them very well, the most exciting of all of the foods has been new potatoes. Not because of it being a new potato specifically but because it was the first food that we ate together as a family. Nora ate hers unseasoned of course but with the growing variety of foods she can eat comes the realization that we’re getting closer to sharing the same meals instead of Nora having to eat something totally different than us. Which this is a very happy feeling since in the beginning she wasn’t ever expected to be able to tolerate oral feedings. Nora only had a total of 4.5cm of small intestine left after having 95% of it removed when she was only 4 hours old because of a midgut volvulus which occurred in all three sections of her small intestine.

First Shands appointment in the Tallahassee Clinic

Nora sees the GI doctors at Shands every 2-3 months and we have always had to take her to the main facility in Gainesville which is 2 hours away. With Nora not being a good traveler these trips are usually hard on her since we go down and back on the same day to avoid taking her to a hotel. There are no pediactric GI doctors in Tallahassee so once a month one of the doctors from Shands comes up to the Digestive Disease Clinic to see patients. Since Nora has been doing so well they finally agreed to let her be seen in the clinic where the appointments aren’t as long and in depth. The doctor was very impressed with Nora’s growth and she got an A+ checkup.

First Butterfly Dance!

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Nora has been watching little girls dance dressed up as butterflies on one of her DVD’s. When I asked her if she wanted to be a butterfly she excitedly said “yes!” I had been thinking to dress her as a duck for Halloween since it is her favorite animal but every time I asked her if she wanted to dress up like a duck she never seemed interested so a butterfly it is! I bought her wings a little early thinking it may take some time for her to get used to wearing them but our little caterpillar was ready for flight and wanted to dance with them on right away. Here is a little video of her first flight.

Nora’s Butterfly Dance (click to view)

First Night in Nora’s Big Girl Bed

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Nora had been sleeping in a smaller version of a toddler crib but all of a sudden last week she seemed to be exploding out of it and couldn’t even roll over comfortably. She has been sleeping in our room with her bed right beside ours since the day we brought her home. We haven’t moved her to her own room yet because she’s a very active sleeper and often gets tangled up in her lines as well as waking up frequently during the night. So we moved her bigger toddler bed from her room into ours last week and the new bed has been a hit. With our small bedroom and a bigger bed for Nora it was too crowded to have her bed beside ours so she’s now at the foot of our bed. So Nora and I both had a first last week, a first for her in a bigger bed and a first for her mommy not having her at an arms length away, we both did better than expected. :)

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