Had a little scare yesterday when we woke up there was blood all around Baybeblues G-tube hole. I cleaned it and wasnt too freaking out until she threw up. I was more worried at this point but still was just watching her closely. She was also making alot of noise trying to talk which she usually only makes noise when she is in pain or upset about something. Then she threw up again which is totally out of the ordinary and dangerous considering that she asperates anything that is in her mouth. I called the docs and they wanted to see her so up to ohsu we went. They checked her out and said she looked fine and to watch for blood in the vomit or trouble breathing or fever and bring her back if it starts bleeding again around the tube hole. Shes doing fine today and there is no more blood. I actually think that the more vocalization might be connected to me lowering her dose of klonopin(clonazapam). She is now taking only a quarter of a pill in the morning and a quarter at night. She is super active which might be why the tube hole got irritated and bleed. She is trying to talk and making all kinds of crazy noises its so cute. Hopefully next video will be of her doing this and trying to talk. In the next few days I will pick up another new med change. I finally got the valporic acid to be switched to a sprinkle form that doesnt include any sugar so she will finally be completely sugar free and can be fully ketonic. Over last few days her seizures have been really small. The days before yesterday she didnt have one all day and we were all talking about how great it would be if that was the first day she didnt have one and then she had just a tiny one while she was passing out but it was so weak you could barely tell. Today she has had one and it was medium and other than that she doing good.
The other two kids on the other hand are giving me pains where I dont even know you could get pains. They are fighting constantly and have no interest in trying to improve. I hve now run out of things to take away from them trying to get them to be good and still nothing. Yesterday when I had to take Baybe to the hospital they were at eachothers throats the whole time and when I finally told them they were grounded for the rest of the day they both started balling out of control just in time for the doctors to walk in and witness. Its so hard because I want them to have an amazing summer but they keep getting in trouble and I have to ground them. Taylor decided to jump up and run across the hood of my van and dented it. I am trying to teach him about respect and hes just in his own world. Lala is just caught between being a kid and trying to grow up so she bounces back n fourth between acting like a little kid to acting like a mom i 2.2 when she should be acting like a young lady. Im just gona focus on pullin gthis family together as tight as I can and hopefully they get out all there crazyness before the new school year.
Hope everyone is having a great summer, Peace & Love.
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