Gracie had another EGD done today to dilate her esophageal stricture. The stricture looked a lot better than last time but he ballooned it a bit more and will still need to repeat it in a few weeks to get it where it needs to be. Her gastritis and esophogitis were worse this time but he took some biopsies and we will continue with the higH doses of prevacid etc for her reflux.
Gracieis doing great and tolerating her feeds well which are now at 50 ml an hour. We will keep increasing it a little at a time so she doesn't have to be on it 24 hours a day.
Gracie had a huge meltdown today about her bald head. It broke my heart. I tried telling her how beautiful she is but she just got more mad. She said people thought she was more beautiful with hair and that she wants her hair to grow and it takes too long and her wig is too scratchy. Etc. All the while sobbing. It is the first time she has acted this way about it. I felt so bad. She is probably just sick of it all, and she is right, it does take a long time. It is hard for such a girlie girl to not have her long curly beautiful golden honey colored hair. It is her face and spirit that are beautiful though! She truly is gorgeous in and out. I hope she will feel better about it. I'm going to stop showing people her "before picture", I think that probably played a big part. :( I feel awful.
I did my first blood draw today and did well. Pretty easy. Also they have the parents do the meds the last couple days just to make sure you know how to measure it correctly!! I thought that was so funny, like who doesn't know how to measure medicine!? They said you'd be surprised. LOL. They said people are pretty incompetent for the most part. Haha.
The best news of all is that we get to get out of here tomorrow!!!!!!!!! YEAH!!! We still have to stay a week in town at the Ronald McDonald house but we are so happy to be done! The child life lad came by to have Gracie help plan her breaking out party! Gracie decided on an ice cream party with chocolate syrup and rainbow sprinkles. I doubt she will eat any of it but it will be fun! She is so ready to go home. The last few days she has cried for home and her daddy. She has been gone from home for 5 weeks, and one more will be 6. I'm just grateful it isn't longer.
The house is getting new paint and carpet next week and it will be scrubbed and clean for her return. :)