Nora Update

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.

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.

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.