She kept standing like this and saying cheese so I guess she wanted me to get a shot of this pose
The Master Decorator
The Master Decorator
The Beginning of the Cookies
I should *so* be going to bed but I have not been to my therapist in weeks due to scheduling conflicts so this is my next best therapy. After the night in the ER with Anna she pretty much got well quickly. It sucked that she was sick but I didn't really mind that the fever made her tired. I know, that is not a good mommy thing to say. The best news of all- she is tolerating her feedings. (That is a lie, the best news would be that she is sleeping all night so maybe it is the second best news) We have been going up nightly and she is now getting 100ml over an hour every 4 hours throughout the night. I somehow feel that by typing that I am sure to be puked on by morning but oh well. I did forget to turn the pump off the other morning though when I unhooked her and returned to my bedroom later to find a nice 60 ml river of tube feeds in the bed. We did laundry and the next night Anna pulled the feeding set out of her button during the night and so we repeated the river and the laundry. Our sheets are now likely cleaner than they have ever been. Her formula is 1.5 cal/ml so that is an extra 450 calories a day which is HUGE. That puts us at about 700-800 calories a day now. I talked to the dietitian who said she needs 1300 cal/day so we are getting there. We will continue going up on the feeds until she doesn't tolerate it. The dietitian said it is weird that she tolerates the boluses and not the continuous and that it is usually the other way around. I told her that Anna does everything backwards. The dietitian said that if she vomits again we could try Nestle Compleat (yes, that is how you spell it) formula. It is chicken and peas and cranberry juice ground up into tube feeding. How nasty is that I ask you? I know she doesn't have to taste it but still, there is just something wrong about that. I looked into it but it has a milk component too so it will not work for Anna. I think it is less about the formula and more about the reflux anyway. I am over being irritated at the GI clinic. I have discovered their main malfunction and have been assured that it will be fixed in February when ALL of Cook Children's records are electronic. Carly is out of school all week for Thanksgiving. I am trying to do some special things with her this week. Tonight she helped me cook dinner and then we made cookies and had movie night. She chose 101 Dalmatians but then was scared throughout most of it. She got special time with me though and that is really what mattered. I can't believe that about 2 months ago she wouldn't eat beef and now she is helping me cook it. She was so proud of her cookies and couldn't wait to call her daddy at work and tell him the cookies would be waiting for him when he comes home from the station in the morning. She just keeps saying to me in the sweetest voice, "Mommy, I love you." I wonder sometimes what I have done to deserve such love from her, she is so sweet. I had an experience today at lunch that I am sure will just be the first of many but it was so sad anyway. I took the kids to eat lunch at Arby's and let them play on the playground. There was this snooty mother there with her 4 children. I heard her tell her kids not to play with Anna after seeing Anna's Gbutton through her onesie. She then added that Anna might bite them. I was disgusted that an adult would do this and sad for her children that this is what their mother is teaching them. It hurt my feelings but then I got a chuckle because I know as Anna gets older and hears these things she is the kind of kid who will just go over and knock the crap out of them. She is tough. It isn't that I condone her knocking the crap out of someone but if I have to chose between people's ignorance or my daughter showing them who is boss, well, then, my money is on my daughter. On a totally separate note I heard an earth shaking sermon Sunday on forgiveness and am determined to work on it. I am usually a very forgiving person but there is one person who I just have an emotional choke hold on and I can't seem to let go. It has everything to do with Anna. I have to learn to forgive him. It isn't because he deserves it, it is because it is what I am commanded to do. I did not deserve the forgiveness I got from God but he sacrificed his Son anyway. This sermon came at a divine time. I say that not so much because I have never needed to forgive before because Lord knows I have needed to but because events this past week have really made me look deeper into this subject than I might have otherwise. On Friday I received word that we will be signing a contract with Mueller and Hillin Law Firm out of Austin to likely represent us in a malpractice suit. Then I heard the sermon Sunday and began really questioning if pursuing the case is in line with forgiveness. I have thought and prayed and read and where I am right now is here...I try to think of the love my heavenly father has for me like the love I have for my children. When they are wrong, I forgive them but even after that forgiveness they must pay the consequences for whatever they have done. So today I do not think that forgiveness excludes consequnces. I am having a really hard time putting all of this into words so I hope it makes sense. If you understand what I am saying what do you think?