Hello everyone! I am sssoooo sorry it has been over a year since I last updated the little princesses blog..... I have been a little busy and actually she has been to.
Well some of the things I can update you all on. We tried the Ketogenic Diet but unfort it really hasnt worked on the seizures at all. They have been better but the have also been worse. The last time we went to the Dr. Miss Tammy went with us (thank god) and 4 ears are always better then 2! But Dr. Gupta wants to get off the Diet since she is still having seizures and so me being me, I wanted to stay on it since it is easy and all. But Miss Tammy agreed with Gupta that she is a lot more at risk for kidney stones. And she helped me realize that he is right since she cant tell us what is wrong and I guess the diet makes them prone to them it IS a good idea because she would be miserable and she will make us all miserable! so actually today we started to reduce the formula for the diet and we will see what happens when she is off it. She always did love to eat so that should make the Princess very happy to be able to eat again. She will just be restricted from milk products due to the disease she has.
We have switched nursing companies and have some new wonderful nurses!!!!!! We still have Tammy who Jordyn loves and we all love and i hope she loves Jordyn too!!!! Kindof think she does. LOL
Then we also have a nurse names Kris she does days at Jordies dads and then Theresa she does nights here and at her dads, she took veronicas shifts since Miss Veronica had ankle surgery and Miss Kathy works days my weekends. So it is working out very well.
Also I am in school for LPN full time days and working full time 3rd shift. so been a little busy, ok maybe a lot busy! Thanks to all my nurses for helping me out! I COULDNT DO IT WITH OUT THEM!!!!!!!!!
We have tried a new med a couple mths ago (like 4) and it did NOT work at all. made seizures more often and stronger and just all around not good! So we are off that and know not to try that again. We have another med that is BRAND new and not sure if gonna try that one or not yet. It has one side effect and its not good it will kill your optic nerve. and since we finally have some vision I would really hate to take that from her! So I asked if the vision is reversible if it doesnt work and the answer was no once the vision is gone it is gone sssooooo,,,,, not sure what going to do there.
We have therapists coming to the house now. VERY NICE! They brought the Princess a STANDER a couple weeks ago!!!!! How exciting. And the best part is she hasnt cried in it like she did at school! She is getting to be such a BIG GIRL! I text Tammy while at school and ask how my baby is doing I get in reply...... SHE IS NOT A BABY!! whats that? She is just a really big baby! LOL She is just too cute! But tammy sticks up for her and doesnt let me call her a baby! What would we do without Tammy? They are all wonderful nurses and I hope they know how much they help and mean to me, US!!!!!!
OK I have to get off here and study some I have 2 finals coming up on Monday so I will do my best to start updating this blog more often, i know I have had a few people ask when I plan on doing it. So that is one of my goals along with passing nursing school.
Hope everyone is doing well. and I will have to start adding pictures of the Princess and if I cant then talk to Miss. Donna and get help to do that.
