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.

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.

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!

Nora’s first slide ride!

Practice makes perfect!

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.

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

I let go Daddy!

HAPPY EASTER!

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.

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.

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.

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.

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

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!

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

We love you Mama Tom!

Nice to meet you cousin Ian.

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

Hey where are you going Matthew?

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

Thanks for sharing the great pictures Aunt Brenda!