Happy 4th July to All!! We are doing very well thank the lord. Julian is feeling much better and we can see it every day. He is full of smiles and is starting to try different things by mouth. Hopefully soon he will be able to eat with a spoon. As many people may not know, when a child has kidney disease is very difficult for them to get hungry, to feel the urge to eat because many times their stomach doesnt empty as fast as a healthy person. He gets most of his nutrition through a G-tube and even at his 20 months he still takes formula to help him to gain weight. His formula has to be decanted to remove most of the potassium and phosphorus because of the kidneys not functioning it causes for those levels to be high in his body which can cause issues with his heart. A healthy kidney usually filtrates these minerals out of our body through urine and poop. Julians kidneys dont do this. After I mix his formula, I have to put this medication called kaxelate and let it sit from 30 mins to an hour to get rid of most of the potassium in the formula. You have to pour the formula in another container and through away the sludge in the bottom of the container that is left after the 30 mins. Then I have to but a medication called Renvela and let it sit for another 30 mins to a hour and do the same as the Kaxelate before I can let him have it. The Renvela gets rid of some of the phosphorus from his formula. The dialysis does help but it doesnt always get the levels to where they are supposed to be. We have to go through this everyday in order for him to be able to have his formula. Yesterday I went to have lunch with my kiddos and even though I know how Karlie can get when theres a lot of people around, it definitely hit me yesterday. While we were waiting to be called I had to take her outside to run back and forth in order to feel comfortable about people where she was. While we waited for our food I had to take her outside one more time and let her sweat away the anxiety she had of being in a room filled with people. People would look at us and think that it was funny because my Karlie had a smile in her face and was enjoying doing this. But they didnt know what was behind the whole running up and down. I have learned that she doesnt always feel comfortable being around a lot of many and that sometimes can make her very uncomfortable. This is something that can happen with a child who is Autistic. They can be sensitive to loud sounds, rooms filled with people, and many many things. They are sensitive to many things. They hear, see, smell and touch differently than we do. They can see and perceive things that we cant. As sometimes it can be inconvenient when Karlie has a meltdown, I want to try my best to comfort her and I just wish that sometimes people wouldnt look at my daughter as a misbehaving child and I as a bad mother. I dont want to feel that I need to explain myself as of why my daughter is behaving a certain way. As I advocate for people to educate themselves about #organdonation, educate yourself about #autism. Autistic children are all unique in their own ways. Dont judge its book by its cover. Enjoy yourselves today as you celebrate the Birthday of United States, but do it safely. #DonateLife, Become an #organdonor, I am #Autismawareness #KidneyDiseaseAwareness #Amiracleforjulian
Posted on: Fri, 04 Jul 2014 11:15:00 +0000