One face in 30,000 with CF

One face in 30,000 with CF
One of the many faces of Cystic Fibrosis

Wednesday, March 21, 2012

Oh the wait and the weight.

Several things have happened the last little while, however life is chugging along for us. I have officially quit my job. This last year I was on a leave of absence, however in that year I have stayed away from IV's and MS attacks and Zoey has stayed out of the hospital. No matter how much I loved my job, I love my child more. I want to keep her as healthy as I can.

Zoey is not doing so well on paper but from what I see she is great. This kid never stops moving, she is happy and she is busy. We take Mommy and Me classes twice a week and do other projects the other days. Her third birthday is on Saturday. What is not good? She will not gain weight. She has been between 28 and 29 pounds or months and months. No matter what we do her weight is not going anywhere. The thing is Zoey is still getting tall so in that reality she is probably really losing fat and gaining height. At last check Zoey's BMI is in the 3%. She is tall but scrawny, I can see every rib in her body. The problem is we could not get her the calories she needs because A: she is not interested in eating and B: After so many feeding tube feeds she would just throw it up.

When throwing up became a problem we took her into the hospital and had the G tube removed and a GJ tube put in. That is a feeding tube that goes into her intestine so she cannot throw up. The problem is now it just causes dumping. All of those calories just come out the other end. She has no control over it and because of this we are having a hard time potty training so we stopped pushing it until we get this under control, then I think she will want to do it. She is very interested in it.

The Solution: The best answer is I don't know. We have an appointment on Tuesday and her GI told me to pack a bag just in case. He is probably going to admit her into the hospital to see if we can solve this problem. He wanted to do it this week but her birthday is on Saturday and I want her to have fun on that day.

Zoey was supposed to start preschool next week but since she will be in the hospital we will delay it for a couple of weeks. She is just going for playtime and snack for right now anyway, she does not have the attention span for actual listening to a teacher, the actual preschool curriculum she will start in September when she is a bit older.

So I will keep you updated on the mystery that is Zoey and her weight. In the meantime I am adding pictures of a project we did together on Monday. I drew out her name and she filled it with play dough. We had a great time. When we were done she pointed to the Z and said Zebra, then she pointed to the E and said that's an E. She is either recognizing letters or the sound they make with the animal that she gets from books. She is very bright and she loves learning. I got this project idea from I love that website she has so many great ideas. Anyway enjoy the pictures.