Well I just wanted to give another update on what is going on with embree. We went and saw the doctor on Monday at Primary Children's Hospital. We saw a pediatric neurologist named Francis Filloux and can I say that he was amazing and we couldn't have found a better and kinder doctor. Embree absolutely loved him and wanted to stay with him. (I don't know if it was because it was really the only male person she had seen in two and a half weeks or not, but she really liked him) Well we made the mistake of thinking that we could get all the testing that she needed that day so we made her fast not thinking that oh the hospital is going to be busy and scheduled out for weeks.
Well we made her fast and half way through the appointment she was coming unglued because she was so hungry and thirsty. Well we talked to the doctor and he said that the tests that we were able to do didn't require her to be fasting so she was fed and given liquids but apparently not soon enough and I feel so bad about that part. She had to have blood work done and get a urinalysis and we have had to have her give a urinalysis before but never were successful because they have to stick a bag on her and then loosely and carefully put the diaper back on, but she is so wild and moves so much that they have always fallen off and not worked, and I wanted to spare her the pain of that because every time she had to wear the bag it riped skin off with it. So I thought lets just give her a catheter and that will spare her, the only problem was that she hadn't drank anything really in 12 hours and what she had just drank was not enough to cause her to have any liquid come out. Well instead of spearing her I just caused more pain because she had to have a catheter and then when that didn't work she had to have a bag put on. Well we then had to force as much liquids in her as she would allow us and run around the hospital to try to have her fill the bag.
Well when we finally got to the Lad to get the blood work done the lab tech who was really nice as well but not so smart in the head. checked on the bag and yeah it was full!! well instead of taking it off slowly so that it wouldn't spill or rip skin he just ripped it off and tour skin of course and spilled it all over, luckily he was able to save enough to do the testing but still it is sensitive down there and he got to hear her high pitched scream and she didn't calm down till we got out of the lab, the nice thing was that he felt so bad that he gave her a big red teddy bear that she hasn't let go of since. Well we now have to go back down on the 23rd of may to get an MRI of her head and brain to see if everything is going good up there. They are sure that something is affecting her but they are not sure exactly what so we also have to go and see a geneticist and another kind of doctor that are specialists in what the doctor thinks might be causing these delays in growth and everything else. So that is what we get to look forward to this summer lots of travel and doctors how fun!! (not really especially with the price of gas!)
Well on another note we were able to go to Hoggle Zoo while we were down there and Embree absolutely loved it! Her favorite part was the elephants and all the cats. She made all the animal sounds that she saw and it was so funny to watch peoples reactions to her. A two year old knows all the animal sounds? can't be, well it is true I have an animal on my hands ;) she can make every animal sound and can identify them as well, mom elephant, mom tiger rarrrrrr! I think that it is cute. she is such a little smarty. She soaks everything in and is so smart and it amazes us everyday the things that she knows and says. She is so advanced in her language skills and can talk so well that it amazes us. Sometimes it is embarrassing to though. She is ready to be potty trained and tells us she needs to tinkle and to poop but she at this point tells us after she already does it in her diaper. Well she is now telling other people that mommy and daddy have to go potty to and if you ask her a question and she doesn't know the answer her reply is basically always now "daddy is poopy, needs a change he poopy" or it is about mommy. So that keeps us entertained when people look at us and say do you need to go use the bathroom? and we have to explain our selves and that we are fine and that is just what she is saying. funny well we hope all is well with everyone and we love you all.
Thursday, May 8, 2008
sorry that it has been such a long time i have been kind of busy since i got out of school. For the last two weeks I have been down in Centerville Utah helping my Grandma, she had shoulder surgery and her other arm doesn't work either so we have a armless woman on the loose for a while oh no!!! well she is now starting to do better and get used to the fact that she can't use her arms but is still stubborn enough to think that she needs to be independent more then she was before the surgery sorry grandma I still love you tonz but it is the truth. she thinks that it is okay to do certain things even though the doctor said that it was not so trying to get her to listen is another story and we are finding out that she is not following instructions and that she is makeing adjustments to things to help her and not have to follow the doctors instructions. So that is one thing that I have had to deal with the other is that we are trying to get embree into Primary Childrens Hospital to get looked at because she hasn't gained any weight since she was 1 years old and she doesn't eat anything but crackers and frosted miniwheats and cheerios. She drinks juice, milk and water like crazy but eats nothing else and even somedays doesn't eat at all. We have tried everything. She has had an occupational therapist since she was 1 and still we have had so success. We are at a loss and the doctors that we have gone to till our most recent doctor in St. Anthony thought we were making all of these problems up for embree and that she was just fine but how can you say that she is fine when she hasn't been on the growth charts for both weight and height since she was 1 she is not even in the less than one percentile for both she is that far bellow. And also seeing that she has not gained any weight in a whole year i don't think that we are crazy to think that something is going on and that we need some more help with her. she looks completely healthy on the outside but i don't know what is causing this and i am starting to really get worried about her not that I wasn't before but i always thought the doctors were helping me to find answers and taking care of her, and now come to find out that they were not doing anything at all. Our new dr. is an angel sent to help, is amazing and is just as worried about embree as we are. He recently recieved all her charts from primary childrens and the other doctors and is not impressed with the information that was there. Come to find out that the other doctors didn't even chart alot of the information that they claimed that they did they didn't do and that they did certain test that we have never done and it worries me about what is really going on with embree is there things that we would have found out sooner if they had done the right thing first and listened to jace and i in the first place. Well we finally got an appointment with primary childrens for monday the 12th and hopefully we can get answers and help to help this little sweet heart of ours. We love her so much and hate to just sit and watch as she is having troubles and everything. Well that is my little venting and pitty party I hope that everyone is doing okay and hope you all know how much we love you. Well Embree and I will be down in Utah till the 12th unless the doctors need us longer but that is the date and then maybe after that we can come home and get settled back in to our little lives again and oh yeah welcome uncle cody home from his mission from the Baltic states, embree asks every day when cody is coming home and now we can say in less then a week he will be here and she gets so excited and dances and sings "cody home oh cody is coming home" I thought that that was so cute and had to share it. ( Cody is Jace's brother just so that you know)