Tatum Update: I will say this quietly, good day. Tatum had a pretty quiet decent day. Last night was terrible, more for me than her. I usually don't have the sat machine on at night, because usually she gets to sleep and breathes clear and she is calm. Last night she just didn't ever seem to get in that rhythm, so I decided to sleep with the machine on. Bad mistake. It went off like every 10 minutes!!! I am telling you that my new least favorite number (if you have such a thing) is 89. Whenever her oxygen sat drops below 90 it beeps, really loud. So literally from midnight to 6 am ,when I finally gave up trying to sleep, it went off every 10 minutes. On the bright side, she had a fairly good day. We had to suction a bit. She was coughing a lot through the night and a little this afternoon, and now she is breathing like you and I. Go figure. I am hoping that she hacked up some of the pneumonia and now she will sleep easy tonight.
We know that Tatum is only going to get to celebrate one birthday. So we decided that we will celebrate a few different times so that we have some memories of this time with her. We had some of our extended family come down tonight. Right before they arrived Halea was helping take some pictures of her. She was flipping through pictures on my camera and came across a picture of Tatum from several months ago, I think that it was right when she got sick. She showed it to me and I lost it a little bit. I know what this disease has done to her, but I really see it when I look at pictures of her from right when she got sick. Her eyes were still big and bright, she had way more control of her facial expressions, she was less puffy. It is just heart breaking. Poor Halea, felt horrible. It was just one of those moments when my guard came down, and I just wished that things were different.
I quickly tried to pull it together before everyone arrived. No one likes a party pooper. I was a little nervous because some of the family hasn't seen Tatum since she got sick, so I am sure it was a shock. One of our nephews (you know who you are Travis!) and his wife just had a little baby girl. It was crazy to see her and see how strong she is and how much she can control her movements. It breaks my heart for poor little Tatum. What a miserable reality to not be able to move anything voluntarily.
Overall a great day. Love this little lady. Countdown to Primary Childrens continues, 2.5 days!