That is what Nora told us after just one night back on TPN. Where as the few days prior she had been telling us that she felt “sick” when we asked her how she was feeling. The poor sweetie had a really rough weekend and really went down hill fast after the Birmingham trip last week. Her weight took a nose dive and her labs from Sunday showed that her body was struggling with very low blood platelets. So after 25 days without TPN and Omegaven we resumed our version of “normal”.

Even though we’ve been doing the TPN routine for over 2 years now, it’s very easy to get used to the freedoms that come along without it, for both Nora and us. In the 3 and 1/2 weeks Nora was off of TPN, she acquired some habits that have been a struggle to break. Without her line she was free to get baths anytime she wanted, sometimes she requested a bath 3-4 times a day and we’d give it to her just for the fun of it. The first morning she awoke hooked up to her line she kept saying “I’m stuck” and “I want this line off” those statements on top of requesting baths all day long that I had to deny her was heartbreaking. But she’s been back on for a few days and has settled back into the old routine. Thankfully Nora is a very smart girl and seems to truly understand that as restricting as it is, the TPN really does make her feel better. After we told her that’s what made her feel better she became more accepting of being “stuck”.

Nora resumed TPN for 4 night straight this week to give her a boost but starting next week she will only be on TPN 3 days a week, Monday, Wednesday and Friday evenings for 12hrs. So even though the unexpected Nora experiment resulted in TPN again, we are still very proud of our girl for doing as well as she did and proving that she will only need it a few days a week.

Another positive that came out of all of this is Nora’s new home health care company is wonderful. They have taken a true interest in Nora and see her for the little gem that she is. The head pharmacist came up from Gainesville to oversee Nora’s first TPN mixture and delivered it to our house himself. I don’t think we’ll have to worry about any concerns we may have with Nora’s TPN not being taken seriously. To top it off Nora’s new nurse, Joan, is amazing. She has been a pediatric nurse for many, many years and is a mom to a special needs child herself. The understanding she has about the importance of sterile technique from a medical and parents prospective brings us a huge amount of comfort.

Sorry for the lack of posts lately and if it caused anyone to worry about Nora. Some of you have sweetly expressed concern since it’s been a month with no update but Nora poo is a-ok. When Nora updates are far and few between it’s usually because we’re having too much fun to stop to write about it or because things aren’t going so great and we’re consumed in what’s going on. The past few weeks have been a combination of the two extremes, but unfortunately more consumed in worry than fun.

So Nora has been completely off TPN for the last 3 weeks. Which sounds like great news right? It is but the reason behind it is far from great. Nora’s last delivery of TPN was a tinted a light blue color when it has always been clear (before we inject the bright yellow multi-vitamins). Of course this was discovered after hours on the Friday at the start of the long Memorial Day weekend. We had the on-call pharmacist come in over the weekend to make a whole new batch of TPN that also turned out to be blue tinted. We had the head pharmacist then come in and make another batch and this one stayed clear as normal. Since we could not get a straight answer for the cause of the discoloration over the weekend and it was extremely concerning to us, we did not hook Nora up to any of the TPN at all over the 3 day weekend. We kept Nora’s GI docs and Dr. Crooms in the loop as to what was going on over the weekend and they all agreed that Nora should not be hooked up to blue tinted TPN. Even though Nora was handling the break off TPN fine the whole situation was very stressful, worrisome and left us feeling extremely vulnerable.

We thought that when everyone returned to work after the holiday weekend on Tuesday that we would get a straight answer as to what was going on with Nora’s TPN. Unfortunately this was not the case, we got guesses and probabilities but no clear answers nor any incentive shown to really get to the bottom of it, this did not make us happy to say the least. Knowing that people have died from infusing the wrong medication, and especially knowing that children have died from being infused with the the wrong mixture of TPN made their “we think” responses to the situation very frightening for us. We don’t want to guess when it comes to something as serious as Nora’s TPN and so any confidence we had in their pharmacy department went straight out the window. After talking to several other pharmacists and doctors who all agreed the blue TPN did not sound right we decided the only option was to switch home health care companies. Thankfully Nora has done so well since it took some time to get insurance approval for the new home health care company and getting the details sorted out.

Nora just happened to have a routine appointment with Dr. Crooms on that Tuesday after the holiday weekend to have her port placement checked. When he saw Nora on her 4th day without TPN he was very pleased to see how well she was doing. Since the TPN issue still was not resolved and Nora was holding up so well he suggested that we use this as an opportunity for a test run without TPN and see how Nora does. We ran this by Nora’s GI docs in Birmingham, they agreed to this trial experiment as long as Nora stayed stable with good labs and blood sugar, hydration, no significant weight loss and the obvious signs of maintaining her energy level and acting “normal”.

At the beginning of this trial run I had visions of many days at Aunt Linda’s pool and at the beach with our line free girl. But it quickly became apparent that keeping Nora out of the 90 degree weather and keeping her close to home to keep her from getting dehydrated was essential to having a shot at success without TPN. We’ve been pushing extra fluids and Pedialyte to try to make up for the 11oz of fluid a day she isn’t getting from TPN. Some days she drank very well and met her quota and other days not so well.

So now we are beginning week four without TPN and overall Nora has held up amazingly well, up until the past few days. We had to take Nora up to her GI doctors in Birmingham this past week and it seems that the stress of the long trip has really taken it’s toll on her. Whenever Nora is away from home she doesn’t eat and drink….or poop as regularly as she does at home, all of which really wack out her system. Up until yesterday her energy had been pretty consistent, although expectantly not as high as with TPN, but today she’s pretty puny and low energy and had a bad stomach ache for a good portion of the day. She will have labs drawn tomorrow and at this point we forsee her going back on TPN this week.

But as frustrating and stressful that all of this has been, there is always a positive side to every situation. Even if Nora goes back on TPN soon, she handled stopping TPN without weaning down extremely well and has proven that she doesn’t need it 6 days a week so at least something good came of the test and all the stress that came with it. I’ll end this post with some pictures of our Super Nora from the past few weeks.

When we were in the waiting room at UAB for Nora’s GI clinic appointment last week she met a little boy named Will who really caught her attention. It was his hospital bracelet that first caught her eye when he strolled over to check her out. Nora had just protested wearing her bracelet but when she saw him sporting it she decided to put her’s back on. Nora has never really shown a whole lot of interest in another child out in public for more than a few minutes but she never lost interest in Will  and we had to wait quite some time in the waiting room before Nora’s appointment. They were very sweet together, I think it was her first crush.

Nora turned two years old two weeks ago and we are still celebrating. Although, I don’t think we’ll ever stop celebrating Nora, no matter how old she gets.

Nora turning two was a huge milestone. Getting her two years down the road from where she started with a strong and healthy constitution has been our main focus. The first two years of life are so important in so many ways. Now we can set our sights on her future with high hopes. We will still keep her as safe and protected as we can but we now feel that we can loosen the reins a little, broaden Nora’s horizons and share her with more of the world.

Nora planting her first flower seeds, which she thought was a blast.

Nora showing off her green thumb success a week later, she is very proud as you can see.

Nora is growing up so fast, physically and mentally. She is now up to 23lbs 6oz and she is just a hair shy of 33 inches tall. She is still gaining weight but at a slower pace for the past few months. Her growing energy must be focusing on height because she has grown a full inch in the past few months.

As much as we want her to grow up big and strong, I as her mom can’t help but wish I could push pause just for a moment. The developmental stage she is in at the moment is so sweet, amazing and challenging all at once. Her language and communication skills seem to continue to advance at warp speed. She can pretty much say anything and she certainly understands everything that is said around her. Even when we try to talk in code around her she always seems to know what’s up.

Some of the newest things Nora has been saying….

When Montana tells her to “be careful” as we do quite often since she is a little dare devil, she will reply “don’t worry Daddy, it’s ok”.

Just recently Nora has been telling us “I have a tummy ache” sometimes shortly before she has to go poopoo. We’re glad she is starting to express how she is feeling but we can’t help but feel a little sad every time she says it because we know that we will be hearing this often.

She thinks it’s really funny to clap her hands and say “I got that skeeter!” as in swatting a mosquito in southern slang.

Nora has also been honing down her chicken clucking skills…..click here to see Chickie Nora

In the past few weeks Nora has started humming and singing. Her favorite songs to sing are “I see your hiney so bright and shiny, it makes me giggle to see it wiggle” and just as of today she started singing Elizabeth Mitchell’s “Ooby Dooby”.

Click here to see Nora’s Ooby Dooby debut performance

Sunday was a very exciting day. Nora went swimming for the very first time! Well not exactly swimming, more like floating around in her pool car and us holding her in the water but it was lots of fun. She took to the water right away and she didn’t even flinch about the water being a bit chilly. I guess it’s only natural she’s drawn to the water with fish oil running through her veins.

Nora was so relaxed with the rocking of the water she almost feel asleep in her float.

A dip in the pool sounds simple enough but this was one of those moments that’s a common activity for non-IV children but for us it was a monumental moment that we’ve been waiting for for a long time. Nora is now down from 7 days a week on TPN to only 6 days so we used her day off to take out her port needle and have some fun family time in Aunt Linda’s pool on Mother’s Day. It was a comforting feeling of familiarity that I hadn’t felt in a while. Since Nora has been born we’ve only been around both sides of our families just a hand full of times. Sunday was a just a glimpse of more special moments with Nora to come that we can’t wait to experience with her.

Make a Smilebox scrapbook

If you cannot view the scrapbook slide show here are some pictures from Nora’s birthday:

Hip, hip, hooray…..today is Nora’s 2nd birthday!

Even though we are only having a small gathering this afternoon with Nora’s grandparents it certainly doesn’t mean that the celebration of Nora’s special day is small. I’ll post more pictures later today but just wanted to put up a quick post in recognition of our amazing, wonderful Super Nora.

WE LOVE YOU NORA!!! HAPPY BIRTHDAY SWEET GIRL!

We had Nora tested for food allergies a couple of months ago and it has really helped with figuring out what foods may work best for her. With short bowel syndrome her diet is still a bit tricky because just because she’s not allergic to something it doesn’t mean that her tummy will agree with it. Like cow’s milk for example, she’s not allergic to it but it’s too hard for her system to process without getting a bad tummy ache. The fat globules in cow’s milk are much larger and harder to digest than the fat globules in goat’s milk which she tolerates very well. But knowing what she is allergic to gives us more confidence when trying new foods with her and more importantly helps prevent Nora from suffering through an allergic reaction.

An allergic reaction to wheat pasta is what sparked the idea to have her tested.  Her reaction to the wheat pasta was pretty severe, she only ate a very small amount but within minutes after the first bite her upper lip was red and within an hour her entire face swelled and she became very flushed as well as having the typical sinus allergic reaction. Her eyes swelled so quickly that one almost swelled shut before we gave her a dose of Benadryl. Thankfully the reaction did not effect her breathing and her other symptoms were gone after 24 hours. Here is a picture of poor puffy face that I took as a reference to make sure she didn’t get worse that day.

Sure enough her allergy test came back showing a high reaction to wheat gluten. That one was expected but there were a few that were surprising, like cucumber. Who would have ever thought that something that is mostly water would be so allergic to some people?

Here are Nora’s test results which shows all of the foods that she was tested for and how severe her reactions were to them.

click here - allergyjpg.pdf

Instead of the traditional skin scrape allergy test we had Nora tested by an allergy blood test. We were really excited to learn of this kind of allergy test when Nora’s pediatrician suggested it so we wouldn’t have to put her through the unpleasantness of the traditional allergy test. Our insurance didn’t cover the blood test so we did have to pay for it out of pocket but we thought it was well worth it.

Even before knowing Nora was allergic to wheat we always used rice as her main source of carbohydrates for two reasons, 1) people with short bowel syndrome commonly react negatively to gluten and 2) wheat products have a tendency to grow mold easily (even if it doesn’t smell or look moldy). Pretty much any product that can be made from wheat flour can also be made from rice flour. So Nora will be having a rice flour cake for her birthday. Since she has never had any type of cake before I wanted to make sure she would do ok with it before giving it to her for the first time on her birthday. Here is a little clip of Nora’s first experience with eating cake last week. She has been asking for more birthday cake ever since.

http://www.youtube.com/watch?v=tu_2yEVqMF4

It’s hard to believe that our baby Nora will be 2 years old in just 2 days. I guess we can’t really call her baby Nora anymore….well maybe I can, she’ll always be my baby. If this shot taken the other day doesn’t show what a big girl she is I don’t know what does.

Nora says….Happy belated Easter Everyone!

This Easter Nora was old enough to really get the concept of egg hunting but thankfully not old enough to realize that there is usually candy inside them so she just enjoyed the pure fun of running around outside finding eggs.

Easter fell on Montana’s birthday this year so the day was extra special. Nora happily shared her egg findings with her Daddy. There has been a lot of birthday talk lately around our house with Nora’s 2nd birthday coming up at the end of the month. (10 days from today to be exact ) Nora was very attentive to the birthday activities and she is definitely getting excited about her big day.

After hunting eggs at Mammie and Pappy’s, Bunny Nora was off to NeeNee and Papaw’s for a second round of Easter fun casual style.

Mommy sure loves her Bunny Nora!

(and don’t worry, Nora’s not eating a nandina berry, that’s just her “humm, I’m thinking” pose)