Archive for the 'Nora Tidbits' Category

A Very Happy Easter


March 26th, 2008

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Nora’s first Easter was a very wonderful and happy day. It was the first holiday she celebrated with family outside of us, her grandparents and Uncle Kia. Thankfully everyone in Quincy was cold free and we were able to let Nora enjoy being around her family, which she absolutely loved.

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Here she is ready for Easter with basket in hand on the way to Aunt Chris’ for lunch. (We waited to put on her Easter dress until we got there just in case……) Thankfully we were lucky the entire time she was in her Easter dress and had no blow outs!

She was a little shy at first checking everyone out but it didn’t take long for her to warm up and shine her loving personality. She even ate her rice porridge at the table with all of us during lunch and thought playing with the napkin ring as a bracelet was pretty funny.

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As you can see by the expression on her Grammy’s face having Nora there was a very special time for all of us. Being able to get her out more and share her love is a true benchmark on how far she’s come. We all knew this day would come even though the doctors were skeptical in the beginning to say the least. But now we have no doubt that we will be celebrating many family holidays in the years to come with Nora right by our side. There are still a lot of family members waiting to meet Nora and we hope to be celebrating with all of them soon too!

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Nora’s first slide ride!

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Practice makes perfect!

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Nora is ready to walk, well more like run…..had I not been holding her hands she would have tried to take off after her cousins whizzing by. She’s been free standing for longer periods of time lately and has even been braving a few steps between mommy and daddy.

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Now for a little snooze on the ride back home to rest up for more Easter cuteness at home in the backyard.

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I let go Daddy!

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HAPPY EASTER!

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An Afternoon with the Ducks


March 10th, 2008

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Nora had a sun filled afternoon at Lake Ella yesterday. She loved watching the ducks and even began saying the word “duck” while we were there. Lake Ella is a public park popular for walkers right up the road from our house which we visit often and will be doing more so now that spring is in the air. Nora loves people watching, she either pointed, waved or said hi to almost every person, dog or duck that was walking around the lake.

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Here’s a little video clip of Nora saying “duck”. It’s not very long but at least I caught her saying it a couple of times before the memory on the card filled up.

http://www.youtube.com/watch?v=_91DUmj7ypU

Yesterday was a much needed breath of fresh air of the stress from Thursday afternoon when I (Nora’s mom) accidentally dislodged Nora’s IV port needle. :( I was putting her in her bed while she was wearing nothing but a diaper, which I rarely do, with her IV pump bag over my shoulder when what seemed like in slow motion I see the tape dressing covering her IV port pulling up. The slack in the IV line between her and the pump had gotten caught on something, which I’m still not quite sure what it was, but lesson learned, ALWAYS double check placement of her line and NEVER put her down in just a diaper. If she had been wearing clothes the tension on her line would have pulled at where her line comes out of her clothes first, but I was in a hurry and thought I could put her in her bed for just a minute while I got dressed………wrong. I immediately grabbed her up trying not to panic to check out the dressing, I could tell by the feel of the dressing that the needle had become dislodged and then that was confirmed when I tried to flush it and the saline wouldn’t go in. So I sterilize my hands, remove the dressing, take out the needle, put numbing cream over the port in preparation for a new needle and call Virginia, Nora’s nurse, and call Montana in from the office all the while cursing myself in my head for what had just happened. Nora was totally fine looking at me and smiling while I’m trying not to cry. I know these things happen and her needle has become dislodged before unexpectedly but when I’m the one putting her at risk for infection over actions that could have been avoided it is quite nerve wrecking. But thankfully the line didn’t break and I took the needle out right away so she wasn’t at anymore risk then she is every week when we change the dressing and put in a new needle but it still sucked. Virginia wasn’t working that day so we opted to put in a new needle ourselves instead of having the home health care company send over the nurse on call. We had Virginia train us to do needle changes for just these type of situations. The new needle went in fine and her port didn’t clot off, thank god since there was no way to flush it with heparin before taking the old one out. But for the next 72 hours after that (the maximum time for a line infection to show up) I replayed the removal of the old needle and the actions taken putting in the new one over and over in my head, second guessing that I had been as sterile as possible. I knew that I had followed all of the right steps and Montana reassured me all was ok but it was still hard to not worry. So the 72 hours came and went with no issues or fever, wheew. Now it’s time to take a deep breath, thank our lucky stars and take a break at the lake.
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Poop Talk


March 2nd, 2008

The past week has been a bit stressful with non-Nora stuff but Nora’s had a pretty good week and when she’s doing well it always helps deal with other things.

Montana’s dad came home from the hospital Monday afternoon still feeling pretty yucky and without many answers as to what happened. Jody (Grandaddy-o) continued to feel poorly through out the week but thankfully has started to feel a bit better over the past couple of days. It was a struggle for Montana to know his dad was in the hospital right up the road from us and not being able to go visit him. With the flu running rampid everywhere we did not want to put Nora at risk and stayed clear of the hospital. Jody’s care and concern for Nora’s health is a top priority as well and he wouldn’t have let us go up to visit even if we had tried. Thankfully Nora’s Uncle Kia, Montana’s younger brother, was able to pull hospital duty all weekend and made sure his dad was well taken care of .

Nora’s communication skills are growing by the day and the developmental therapist for special needs children thought she was doing so well at her appointment on Wednesday that she said she didn’t think Nora needed to be in the program anymore unless special concerns came up. Nora’s language and cognitive skills were assessed at 1 1/2 to 2 years of age and her physical developed is right on track rating at 10-12 months. She is now not only saying “poop” but telling us when she does so, which with short gut is quite often, although it’s rare that she goes and we don’t either hear or smell it. Most parents probably wouldn’t be so happy for their little girl to be saying poop but when you’re a parent to a short bowel child it puts poop in a whole new perspective. Nora is also pointing to her hair and feet when you ask her where they are.

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Nora’s TPN rate stayed the same this week because she had lost 6oz on Monday’s weigh in. It’s always disappointing to see a decrease in her weight but we’re not too concerned because we feel pretty sure her weight loss was due to a poop-a-thon that began the day before she was weighed. Her stools had been consistently thicker but then last Sunday boom, LARGE quantities of VERY loose poop. It’s hard to portray the magnitude of how explosive her poops can be until you’ve seen it first hand. Nora is teething again and her poops always get very loose when she’s cutting teeth. They’ve thickened up in the past few days and she still has a good appetite so we’re hoping for a gain back of what she lost plus some at tomorrow’s weigh in.

Nora started eating Cheerios last week, well not the name brand Cheerios cereal but an organic version and loves them! She wasn’t too thrilled with the first try but after a few days of eating a few at a time she has decided that they are very fun and yummy to eat! She’s very good at chewing/gumming them up before she swallows all the while making “mmmmm” noises.

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Nora loves stroller rides and being outside. Thankfully the weather has been nice and warm enough to get her out and about lately.

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A Meeting of the Cousins


March 1st, 2008

Here are some pictures taken a few weeks ago when Nora first met some of her cousins from Quincy. Hopefully they can all have another play date soon!

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The initial meet and greet……..cool pants Matthew!

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We love you Mama Tom!

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Nice to meet you cousin Ian.

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Nora can’t wait to join her cousins on the slide!

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Hey where are you going Matthew?

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From left to right….Ansley, Lucus (held by his mommy Anna), Nora and mommy, Olivia and cutie crashing on his tushy is Matthew. :)

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Thanks for sharing the great pictures Aunt Brenda!

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GrandDaddy-O in the Hospital


February 25th, 2008

For those of you that don’t know, on Friday night my dad (GrandDaddy-O), had something go wrong with his heart. He passed out in the kitchen and cracked his head open and ended up taking an ambulance ride to the hospital. His heart rate was going crazy (between 40bpm and 130bpm) and he was very dizzy and throwing up. They ran a ton of tests and so far found nothing seriously wrong. We are still not 100% sure what happened but since he is finally feeling better today we hope they will be releasing him from the hospital later this afternoon. It seems like he is going to be ok but its been a scary ordeal. I hope it is at least a wake up call that he needs to take a little better care of himself since we sure would like to keep him around…..right Pop?

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Right on Track!


February 22nd, 2008

Nora had her 9 month check up yesterday (even though she’s closer to 10 months) and got an A+! Dr. Ness was extremely pleased with how well she’s doing in all areas, growing, eating, mental development. She’s in the 90th percentile for length and weight and in the 50th for head circumference. We could not be happier with Nora’s progress! :) Her TPN rate was dropped earlier in the week and she has been tolerating the decrease very well and her blood sugar has been staying stable.

Nora had her first bite of oatmeal on Sunday and loves it! We cook her organic oats and blend them up. She’s still eating her squash and rice porridge as well. We tried sweet potatoes a few weeks ago but they were giving her diarrhea so we’re holding off on them for now and will try them again when she’s a little older. Her digestive system seems to really like the oatmeal and it hangs out in her intestines for a long time and makes for nice thick poopies. Since her system seems to like oats the next new food we’ll try is Cheerios. We’re excited to give her finger foods with a new texture and I’m sure her new teeth will enjoy munching on them.

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Do I have something on my face?


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Nora Update


February 17th, 2008

I can’t believe it’s been over two weeks since our last Nora update. Time just flys by in Noraland but she has been doing great. She has been at a lower TPN rate for the past two weeks (down to 17ml/hr from 20ml/hr) and has continued to gain weight at an impressive rate. She was up to 16lbs 12oz last Monday and we are anticipating another good jump at tomorrow’s weigh in. Her doctor will continue to decrease the rate each week as long as she continues to gain weight. The ultimate goal is to get her down to a lower rate for only 12 hours a day instead of 24 and then eventually get her off TPN all together.

But one thing we’re not looking forward to tomorrow is the weekly needle changing routine. For the past 4-5 weeks Nora has been getting extremely upset when we put in a new IV port needle. We’re still using the numbing cream so she’s not feeling physical pain but she certainly lets us know that it hurts her feelings, gets very upset and cries a very sad cry. :( She’s just too smart and knows the routine. We weigh her, then nurse Virginia takes her vitals and assesses her then the new needle process begins. We put on our face masks to keep our germs away from the port site and nurse Virginia organizes the dressing supplies, blood vials, etc. while I get all of the comforting supplies ready, binki, bottle, favorite toys. For a long time she was totally fine to be distracted with toys, drink a bottle, or sometimes even fall asleep during the process but then something changed. We have to hold her in a certain position to keep her still and I think that’s definitely a big part of the problem. We let her sit up last week instead of lying her down to see if that would help but she still got just as upset. She gets so upset that some of the time Virginia can’t even draw blood from the port until she calms down because she’s so tense her blood isn’t easily flowing. It’s always me (mom) and Virginia for the process so tomorrow dad will be here in hopes that a changing of the guard will help. We know that this often happens to children who have to have a lot of medical procedures done, we were just hoping it wouldn’t happen with Nora. One very good thing out of all of this is that Nora still loves her nurse Virginia very much and doesn’t associate her with the not-so-fun stuff. We can’t express enough how thankful we are to have such a wonderful nurse like Virginia who loves Nora so much and takes such good care of her.

On a happier note Nora is going through a language explosion! She is saying “Dadda”, “Mamma”, “Bubba” (the family dog), “poop”, yep!….poop, and the most complex is “kitty cat”. Most of the time she will just say “cat” but when she’s really excited about seeing them she’ll say “kitty cat” in a high pitched squeal. A lot of times when Montana comes in from work, which he is frequently in and out during the day since his office is in the back yard, she will say “hi da!”.

Nora is also now able to stand for a few seconds all by herself without holding onto anything. She practices in her bed and play pin starting off by letting go with one hand and then the other. She LOVES to play peek-a-boo by peeking out back and forth from above and below the top rail.

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She is also now officially crawling and also hurling herself forward at an alarming speed. A few weeks ago she realized that she has fuzzy stuff on top of her head and loves to feel her hair.

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Thanks to all of you who left such sweet comments about the passing of Montana’s grandfather. Your love and support is very much appreciated. He was a wonderful man who meant so much to all of us. On the day he passed Nora was able to gather at Mamma Tom’s house with the rest of the family and finally meet Montana’s cousins and their children. Even though most of his family only lives 20 minutes away Nora hadn’t met but just a few of them because #1 we are very protective of Nora and have been keeping her exposure to other people limited until she got a little older to give her immune system a chance to get as strong as possible, and #2 there were colds circulating among the family for a while. But thankfully everyone in the family was cold free and Nora was able to help bring some light and love on a much needed occasion.

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