Surgery Stay Day 34- The BEST day yet!!

Today was definitely the BEST day yet. If she didn't have all those things hooked up to her, you wouldn't have known she was a patient today. She was the happiest, smiliest kid around the 3rd floor today. I have been waiting for this day for awhile now. We had a WONDERFUL night sleep last night. She slept clear through the night and I did not hear her fuss once. I got up at 6:30 a.m. when the team came in. The nurse we had through the night came in and told me that she had put her on suction at 6:00 a.m. just to get out anything that was in there before her shift ended, but she only got about 50 ml's. Which is nothing compared to what she usually has coming out. I was a little bummed, because I probably wouldn't have hooked her up to suction because she had done so good. Anyway, she went all night without suction and other than the time the nurse put her on at 6:00 a.m., she went all day today without suction too. I am so excited, finally a step in the right direction. That means one step closer to coming home. The surgical team came in and also could not believe the change, it is like night and day and just that quick. She had a bad day and the next day was perfect. I am so proud of her for keeping busy today, and trying not to worry too much about her tummy. The team is going to up her feeding tube today to 40 ml's. Ari slept through them coming in this morning. She finally woke up about 8:00 a.m., and immediately wanted to face time with her brothers and sister at home. They chatted for a little bit before the kids had to run off to school. Then we got her up and went for her 1st walk of many today. Then she got on her new ipad mini that her Uncle Jeff and Aunt Jeni bought her. They have been wondering what they could do for Ariauna that would make her smile and that would help her in the next several months keep her mind off what is going to be happening and decided that they would buy her an ipad mini to help her keep in touch with everyone in the outside world. She is so excited and we are so grateful to them. She got on Face time and chatted with Mrs.Weston her Special Ed teacher and Ms. Holloway her Speech Therapist at school. We got ready for the day and then she wanted to go to the playroom, she walked all the way down. She spent several hours down there making home made silly putty, snow, and a watermelon key chain.

 

We met some new fun friends in the playroom. Allie and her mom were lots of fun, it helped to pass the time by having a little friend to play with and talk to. Lucky for Allie, she was only here for one night, she got to go home today. When we finished the key chain she walked all the way to the other end of the 3rd floor to the parent resource room to get my lunch and then she walked all the way back to our room. We started working on Jaxon's birthday invitations. He will turn two this Saturday, Ariauna is really hoping to by home by then. I told her she could help make his invitations. We are not sure when we will do his party because we want to make sure we are home before we send out the invites. Luckily, he won't realize if we do not do it on his actual birthday. While working on the invitations, Charlene from the PCMC school services came down to tutor Ariauna. They worked a lot on her multiplications. She enjoys working with the tutors when they come down. At 3:20 we left and walked down to the playroom again for the Puppet show, but when we got down there they said it was actually going to go to each child's room today instead. Ariauna was already up and walking so she decided to go stop by to see another one of her favorite Tech's- Cassie. We have had Cassie a few times and Ariauna absolutely loves her.

Then we came back to our room, and she got on Face Time to chat with Jaxon at Grandma and Grandpa's house. We chatted with him for a bit. He is changing so much, he was laughing with Ari and blowing her kisses. They are so close to each other and it is so hard on both of them not to be able to be home together. Ari and I were both tired so we had a short one hour nap. Then we got up and went downstairs to get me some dinner. Ariauna wanted to go with me and so she walked all the way down and all the way back and she wanted to do it all herself.

Once we got back to our room she decided she would have dinner with me. So here we are enjoying our first meal together after 6 weeks. Ariauna enjoying her Popsicle and me eating my dinner.

She was so excited and happy about getting to have a Popsicle. They gave her one yesterday, but she only took a few licks and did not want the rest. Today she ended up eating the whole thing. Check out her lips!

Before our day nurse got off, she took the wrapper off the end of Ariauna's suction tube and weighed it. Now that she is not being hooked up to suction, it is just on down drain meaning if too much builds up in her tummy it could flow out the tube in her nose into this wrapper. The nurse replaced it with a clean one and then they have to weigh it. It ended up being what they would figure 26 ml's and that is all that came out in a 12 hour day. Yipee! After dinner we went back to the playroom and she made some more homemade silly putty. The playroom closes at 8:30 so then we spent the rest of the night watching the Disney channel, I paid some bills and Ari continued asking for more to eat. She wanted more Popsicle, but the nurse and I both thought it would be a good idea to make sure her tummy handled the first one without her getting sick. I  tucked Ari in bed, updated the blog and now off to bed I go....We had a fabulous day, she did amazing. I hope we can continue to have good days. Today I am grateful for Ariauna. She has taught me so much the last 6 weeks. She is one brave, strong, happy little girl. She is one tough little fighter. She always has a smile on her face even when she has been given some really sad and depressing news, she still finds a way to find the positive in it and continues to smile. I think she has taught me far more than I could ever teach her. I hope I can be just like her and be strong, and fight this next trial as well as she does. She is my little SUNSHINE and for this I am grateful!