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.
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.