the no nursing woes

i am short 44 hours a week nursing for estie, its been very hard , between trying to visit zeke go to doctor visits and take care of estie,, i am not getting much done had a big melt down today yelled at all my waiver workers that they needed to start cleaning or i would get rid of them. i know it was not very nice but true, if they worked anywhere else they would have to clean up. i am very tired. We saw a nerologist for estie yesterday he did a EMG, very painful, on her. said she does not have a muscle disease but a neropathy of the axion, not sure what type yet he did some blood work and we will see what that comes out.

some of the kids are taking horseback therapy, see pictures, they are really enjoying it. Update on zeke, he is on the hospital vent, the doctors are going to try him on the home vent again in a couple weeks, he is doing better since being on the hospital vent and we are enjoying getting to know him. It has been very hard driving three times a week to be with him and expensive 40 dollars a time in gas. yikes. We had a meeting with the genetic and pulmonary docs. they do feel he has distrophic displasia, they do not know what the future holds for him if his lungs will grow enough to support his body. they say time will tell. I told them that God sends us every child and there is a reason he was sent to us and this hospital. We are going to try to contact Matt Roloff from little people big world {he has the same type of dwarfism} to see if he knows any cases like zekes.

BAD NEWS

Today the hospital social worker called, they were having trouble with zeke he almost coded. they got him back but his breathing is not great. Not sure what his prognosis holds but i do know he will be at the hospital for a very long time. After they worked on him and got him stable he smiled at them.