attempting to update while on the plane!

So as the title states I am on the plane back home. K is so far past over stimulated I believe it will be next year before she calms down.
So Tuesday we had clinic with Dr chelimsky both the husband n wife. It always so nice to see them. They are so understanding. While we are there they always make us feel like she is the normal one and we are all jacked up. Lol. So she said the nay sayers can call her. Trust me she is an irate British woman. I believe it would not be pretty. She think k gi tract is slowly going downhill. Which sucks. Everyone has to be able to absorb nutrients and poop. I know we all like to blush n pretend we don't that unless you are a man then you laugh n think you don't stink. So she wants to do a rectal monometry (sp?) Test, egd, rectal biopsy, and an ekg on the stomach to see if she is a candidate for a gastro pacemaker. Also she suggested we apply to the nih to see if we can get accepted for her rare disease stuff. So we are going to try our best. Please pray we do get accepted. This would be great for k n the Autonomic team.
So today clinic was okay. He thinks her system is in a funk right now due to not receiving her Ivig while in patient. I want to smack the terds at the hospital. So he said he wants to hold off on bloodwork until she feels better. I of course was fine with that. I hate to see her in pain. She has been in enough pain.
Overall the team agrees her disease has slowly progressed and you know that just blows monkey balls. It's hard. Especially when your spouse is thousands of miles away n he calls hey hun how was clinic today. That includes a deep breath and reciting the whole appointment in which is like another slap in the face. Ah.
So we will be venturing back to Cleveland in 6 wk and will be there for a while. Probably a week or two.
Now I have to manage my school schedule n my family. As far as school goes it is definitely a challenge. My good friend who carries me through is having her own issues. She is my sanity at school. I feel lost on what I am going to do. I already had my cry. Now I go tomorrow n keep on keeping on. I have to do what is best for my family n that is get my lpn then move to my rn. I know I can do it. Deep breaths after all we do get to add a member to our family after I finish school. So I gotta keep my eyes on the prize.

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