Day Four
Ruby had a much better day today. She had labs drawn this am but that was it!! Rounds did not give me any more information. Apparently not much is done around the hospital on the weekends unless it's an emergency. I didn't mind the break and I'm certain Ruby didn't either.
She had special visitors again. Grandma and Grandpa Flynn came and gave Ruby her first sucker. (That is my dad's goal with all the kids). She loved it! She had sticky grape sucker saliva all over her face and body, even in her eye! She did not mind though. Grandpa put Ruby to sleep and rocked her for over an hour (very tough job for a grandpa to nap with his grand baby.)
She ate lunch and threw up two times again. It's not much but enough for me to remind the doctors the main reason we are here is to figure out her GI issues. It seems they are so fascinated by her size and what she can do that the focus has been on genetic testing and not GI.
After lunch she had more special visitors, uncle Brian, aunt Jana, and cousins Ethan, Riley, Parker and Lincoln. She did not hesitate to greet our guests as she knew they did not have needles. She played with all of them for quite some time and enjoyed the interaction. After they left she carried around the stuffed dog they brought her from the zoo.
Dinner was better and stayed down. The doctors wanted me to trial dairy products with her so I did. Good old American grilled cheese and french fries, with a side of string cheese and watermelon. It didn't take long for that to go right through her along with uncontrollable crying for 45 minutes. It will probably be a while before I try dairy again. She struggled to get comfortable to fall asleep which is very unusual for her. Sadly the 4 year old boy in the room next door is more uncomfortable and screams for over an hour at a time-several times a day and she continues to be aroused by him. My heart is sad for him and his mother who often ends up in the hallway crying.
She was not bothered much by her IV today and she often just didn't use that hand. They took out the one on her foot so now she can walk again. Bedtime was a different story. I think with her belly hurting she would not stop pulling on the brace on her arm to hold the IV in place. She even began biting it. Hopefully she will get some good rest tonight because I think we have another play/observation day tomorrow. Monday the fun starts again! :(
Sweet dreams Ruby!
She had special visitors again. Grandma and Grandpa Flynn came and gave Ruby her first sucker. (That is my dad's goal with all the kids). She loved it! She had sticky grape sucker saliva all over her face and body, even in her eye! She did not mind though. Grandpa put Ruby to sleep and rocked her for over an hour (very tough job for a grandpa to nap with his grand baby.)
She ate lunch and threw up two times again. It's not much but enough for me to remind the doctors the main reason we are here is to figure out her GI issues. It seems they are so fascinated by her size and what she can do that the focus has been on genetic testing and not GI.
After lunch she had more special visitors, uncle Brian, aunt Jana, and cousins Ethan, Riley, Parker and Lincoln. She did not hesitate to greet our guests as she knew they did not have needles. She played with all of them for quite some time and enjoyed the interaction. After they left she carried around the stuffed dog they brought her from the zoo.
Dinner was better and stayed down. The doctors wanted me to trial dairy products with her so I did. Good old American grilled cheese and french fries, with a side of string cheese and watermelon. It didn't take long for that to go right through her along with uncontrollable crying for 45 minutes. It will probably be a while before I try dairy again. She struggled to get comfortable to fall asleep which is very unusual for her. Sadly the 4 year old boy in the room next door is more uncomfortable and screams for over an hour at a time-several times a day and she continues to be aroused by him. My heart is sad for him and his mother who often ends up in the hallway crying.
She was not bothered much by her IV today and she often just didn't use that hand. They took out the one on her foot so now she can walk again. Bedtime was a different story. I think with her belly hurting she would not stop pulling on the brace on her arm to hold the IV in place. She even began biting it. Hopefully she will get some good rest tonight because I think we have another play/observation day tomorrow. Monday the fun starts again! :(
Sweet dreams Ruby!
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