In the last 2 weeks many things have happened. Here is an overview:
Eli's new nutritionist wants to change him over to a new formula called peptamen with fiber. Don't know a whole lot about it but some of the ingredients are concerning. They also want to increase his fluids an additional 80ml. To some that may not seem like alot however he is currently getting 270 of free water and this would bring him up to 350ml in a 24hr day. They also think he is inpacted and is ordering a KUB Xray of the kidneys ureters and the bladder to confirm there suspicions or change there plan of attack. Personally i don't think he does but I am not a doctor. So we shall see. They also want us to increase his amount of cornstarch. So far we have increased it little by little and have put it in to his whole day he is doing very well with it so far. Today is eli's tuberversary. 2yrs ago today my little man had a surgery that allows him to live. It is very real thinking that he is here because of his tubie. We will be celebrating this occasion tonight with our family and his nurse. He will have his leapfrog cake and we will be making a cake so we can all celebrate together. It is a little hard for me to look back at the journey that we have been on this last two years. All the things that could of happened and has happened. I only can hope that this year will not bring too much but only time will tell. You know eli he only does things big. On a positive note eli has learned help and he is vocalizing by squawking and letting us know he isn't happy or he needs something. We are pushing more signs with him and starting to use a program to help him tell us what he wants. This will be a slow process but i think he will do well he is a very smart little man.
Ari she is getting ready for her 5th birthday. She has invited her entire class. She is super excited to turn 5. She has so many ideals on what she wants. Mainly princess things and anything purple pink.
Ben wow what can I say he has been just out of control. School is having issues with him stealing kids stuff and hiding it in his desk. Behavior at school and home has just been crazy. Stimming not sitting down screaming and just being an antagonist. We have no ideal whats going on no changes that would effect him at the house. We are looking getting a helper for after school. The helper would help him get home work done and help get rid of some of his extra energy. We meet today to see what we think.
Jace he is doing pretty good he has more good days lately then bad. He is enjoying school and he is getting really good at math.
Emily she is getting ready for a district choir. I am super excited to hear her sing. She is also contemplating being in the school talent show. She is torn between a couple of songs. She got classes to help her read. I think they look sharp on her and hopefully they will help her with some of the blurriness that she is having.
Myself I am doing pretty good health wise. Still no real weight gain. I am trying not to OCD over it but it is not easy. I went from weighing every couple of days to just once a week. I have started a new knitting project it is a turtle and a frog that are reversible. Work on it is slow but i am getting it done.
We as a family have started church two weeks ago. It is called universal unitarian church shawnee mission. It is an amazing church. I am very pleased to be in an organization that has the same views and beliefs that i have.
Well have to go for now. Smile if you haven't today.