With the fall season officially upon us we are looking forward to all of the fall time fun to come and looking back on Nora’s summer adventures.

Nora came a long way this summer with getting over her fears of the “big water” waves, sticky sand between her toes and getting all the way in big pools. Last year she just wanted to dip her toes in and sit on the steps but now she’s our brave little fish who mustered up the courage to let go of my hands and is practicing treading water.

Look Ma, no hands!

Painting a masterpiece while enjoying the sunshine.

Nora still needs help with the steering but after a lot of practice she has turned into a great pedlar on her big girl bike.

A very exciting step made this summer is Nora getting her own bed in her own room and actually sleeping in it!

Before a couple of months ago Nora had slept in our room every night for the last 4 years. With her awaking so frequently to eat and getting tangled in her IV lines at night it was just what needed to happen for her safety. But now that she’s getting more independent and is only hooked up to TPN three nights a week she’s sleeping in her room most nights that she’s not on TPN, or at least falling asleep in there before sneaking into our room in the wee hours of the morning.

When we took Nora to her GI appointment in Birmingham back in July, some of my family from Kentucky met us there to spend the weekend. The original plan was that Nora was going to have exploratory surgery and they were going to meet us there for sweet family support. But at the last minute Nora’s doctors decided that they wanted her to stay on the medicine that his helping her GI bleeding since she’s improved so much and hold off on procedures for now. So thankfully Nora just got to enjoy a very fun weekend with her grandparents, Aunt and cousin instead!

Nora was a super happy girl to see her family (and of course I was too!)
Nora and her cousin Marin are such sweeties together. Whenever we ventured out they were always holding hands, even just walking back and forth to our rooms and in the elevator.

We took the girls to the McWane Science Center, which if you ever find yourself in Birmingham I highly recommend going there, it’s mostly set up for kids fun but even us adults enjoyed all of the neat things to do and see.

After a day full of fun Nora was very over tired but too excited to settle down for a badly needed rest. Thankfully cousin Marin was there to save the day and got Nora to fall asleep by listening to her big cousin read.

Soooo sweet…..out like a light……

Getting to spend time with my family is always very special but the weekend was extra special since it also happened to be my Dad’s birthday. Nora was too tuckered out to join us for birthday dinner but she was ready for the after party to serve her Grandaddy some ice cream and fresh peaches….mmm…

Although we were very relieved to not have to put Nora through procedures on the trip and she is doing much better, we still want to figure out the source of her bleeding problem and find a permanent solution instead of keeping her on Carafate indefinitely. So since her Birmingham GI appointment we have taken her to Nemours Childrens Clinic for a second opinion. We are still trying to figure out the best path to take for Nora and I will post again soon with more details about it.

Nora always runs on the anemic side but last month the blood loss in her stool caught up with her, she was feeling really puny and her numbers were pretty low so she needed a transfusion. Nora had quite a few transfusions in her younger days and has needed them after surgeries but in this instance the timing wasn’t as critical so we wanted to give her some blood from a known source. So after a family trip to the blood bank we discovered that her daddy’s blood is a perfect match to hers. Now that we know this Montana can direct donate for Nora in the future when needed and that gives us all a great level of comfort.

Besides the issues at hand and after the transfusion perked her up, overall Nora is doing quite well, her weight has finally started picking up again and she is growing taller very quickly. She is still having lots of fun adventures and is her happy, sweet self. She has mentally matured a lot in the past few months and is becoming aware and learning about her medical issues and thankfully has become more able to deal with the unpleasantness that can come along with them. After the procedures Nora had last year she developed some really extreme anxieties revolving around anything medical and BM related.

She was having such a hard time that at the beginning of the year Montana and I felt like we needed help ourselves in order to be able to help her better, so we started seeing a family counselor who specializes in children with chronic medical issues. The counselor is wonderful and has really helped us learn how to guide Nora to work through some of her issues. That’s not to say that we still aren’t working through daily issues but that seems to just come with the territory of Nora’s strong will, the developmental stage she’s in and her medical challenges. We are just happy to see her not being in so much panic mode and are really hoping all that we’ve been working on the last 6 months will help Nora cope better with the upcoming procedures. We just want our sweet little Super Nora to only worry about regular 4 year old stuff as much as possible,
like what books she’ll check out at the library

and how many fish Daddy may catch

and discovering how yummy ice cream is on a hot summer day


being a super silly chef

And just having fun.

And fun will certianly be the focus tomorrow for Nora is really looking forward to some 4th of July fireworks!

Nora turned 4 years old last Wednesday, April the 27th. We had a small family celebration on her birthday then had a party with her friends last Saturday.

Tearing into her gifts on her bday morning.

Bubbles and balloons!

Nora’s big gift from us for her bday was a playhouse, which she has been having a blast playing in.

And when Saturday came for her big celebration with her friends, she had lots of fun being the playhouse hostess.

Time for presents……

and cake! (can you tell the cake is very serious business?)

And the most special gift of all was a visit from Nora’s surgeon and friend, Dr. Crooms.

Happy Birthday our sweet, darling Super Nora!! You are the light of our life, such a special blessing we have been given to be your parents. Love, Mommy & Daddy

http://www.nytimes.com/2011/04/21/science/21gut.html?em&exprod

We had some very special visitors last month, Nora’s Nanny and Grandaddy came down from Kentucky to build us a greatly needed laundry room (Thank You!!). Nora got in lots of good time with her grandparents and the visit was wonderful. Nora even helped out with the construction.

And of course while they were here Nora provided plenty of good entertainment of dressing up, dancing and strutting her silly self for them.

Nanny and Grandaddy even got to catch a Twinkle Toes class while they were here.


I love these big post-show smiles.

Nora took Nanny and Grandaddy out for a night of yummy seafood. Nora thoroughly enjoyed her red snapper and said she loved “eating at fancy restaurants”. Nora’s been eating out at restaurants more often these days, not too often but compared to never it seems like a lot. Even though her restricted diet and food allergies poses a challenge, as long as I bring her snacks and scope out the menu beforehand we’ve had pretty good success and she really enjoys the experience. When we’ve had instances where everyone else is eating something she can’t I think it’s been harder on me than her but I’m trying to learn to let worry go when she’s never known any different anyways.

After the big construction project we snuck in a quick run to the beach for the first time this year while Nora’s buddies Maya and Rachel were there on their spring break. Nora was so excited to head down to the beach she had her bathing suit on before sunrise and patiently waited for her buddies to wake up before busting into their room.

Lets go!

Last summer Nora wanted nothing to do with swimming in a pool or the ocean because she said it was “too big”. She still wasn’t interested in getting in the ocean but she was all about testing out the water in the pool at the beach. Now since she’s realized there’s nothing to be scared of she’s been a little sprinkler and kiddie pool addict and has been playing in it just about every afternoon that she doesn’t have her port needle in.

Watch out summer, here comes Nora!

Nora started “Twinkle Toes” ballet class a few weeks ago. This is super exciting news because firstly she’s always been a little ballerina at heart and secondly this is her very first class of any kind. Since she had never been in a structured class environment before she was a little overwhelmed at first, being distracted by watching the other little girls instead of following the teacher. But now she’s got the hang of it and has been having lots of fun in her class.

With the thoughts in mind of Nora’s germ exposure going to ballet class, we decided to follow the idea of other short bowel parents who have written brief letters to the other parents in the class explaining our situation and asking them to let us know if their child has been sick recently. Nora seems to have a strong, well established  immune system but with flu season upon us we decided it was best to play it safe.

Writing a letter like this is was a bit of an awkward thing for us and apparently when I handed them out to the parents at Nora’s first class my awkwardness overcame my social skills. I didn’t give any explanation while passing out our letter, or really say anything more than “can I give this to you?”. I was feeling a bit like I was handing out a sales flyer from the looks I was getting but I was hoping my weirdness was mostly in my head. Apparently not, after class Montana assured me I came across like a total weirdo and looked like I was soliciting for Amway! Oh well, we had a good laugh about it and at least the deed is done.

Even though this picture is a little blurry I just had to share Nora’s super excited expression when we went to the ballet store to get her slippers and outfit.

Twinkle, twinkle!

It seemed that Christmas came and went faster than usual last year. But to a 3 year old I’m sure every day seemed like an eternity waiting to see what Santa would bring. All month of December Nora would ask every few days if it was Christmas yet. But she had lots of fun while the time passed, adding new, out of the ordinary ornaments to the tree on a daily basis. By the time Christmas was over she had anything you could think of hanging off the tree, toys, baby shoes and even her big girl undies from Santa donned the tree on Christmas day…silly girl.

A happy girl on Christmas morning

Ready for Christmas lunch and still smiling……

Christmas is awesome!

We got an unexpected surprise the day after Christmas – snow flurries in Florida! It wasn’t even enough to stick to the ground or even to see unless you were looking hard but it was snow……. in FL! This was Nora’s first time seeing snow so that made it even more exciting. Since there wasn’t enough to build a real snowman we had to improvise with our lighted snowman and Nora still had a blast “building” him.

Nora got to experience another winter first a few days later when we took her ice skating. Even though it’s been extremely cold down here but not quite enough to actually freeze a lake. They had a synthetic ice skating rink set up downtown which was the real deal to Nora and she had a great time.

(a little side note…… I just wanted to point out something that initially may seem very insignificant – the little red wristband on Nora’s wrist that she was given to wear when we bought her ice skating ticket. When I went to put the wristband on Nora I noticed she began to look a little nervous, then I realized that until that day, the only wristbands that Nora had ever worn is when she’s admitted for a hospital stay or procedure. We immediately assured her that the band was for ice skating and then she was ok and ready to go.  I’ll be keeping that first little happy red wristband in my Nora keepsakes to remind me of this very happy first.)

Nora thought the huge ornaments they had downtown were pretty cool and they put her in a very silly photo shoot mood.

I finally updated Nora’s YouTube site if you want to see the silly girl in action.

http://www.youtube.com/profile?user=norasmamma#p/a

These wishes come a little late, but we hope everyone had a Very Merry Christmas and wishing you all a Very Happy and Healthy New Year!! Love, Nora, Montana and Sarah