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.

life changing event

early his morning our new grandchild came into the world. malachai Israel, he was born 4 weeks early because of keturahs high blood pressure, but he is doing fine and keturah and demetrias are happy parents. pictures will follow

proud owner

well we finally made it to texas to sign papers on Ezekiel, we flew into dallas in rain and sleet. The meeting with his birth mom was canceled do to weather, finally found a motel, they were all full do to planes being grounded , Tanya the social worker met us at the motel and we signed papers in the lobby, so now we are the proud owners of a child we have never met. The plan is for him to be airlifted to childrens hospital on tues. Of course everything crazy has happend since we decided to take Ezekiel, our washer broke, the bus broke and our van broke and one of our nurses quit..The timing is the worse, we have keturahs baby shower, willies 60th birthday with my sister comming in, but thats the way it always is when we take in another child.

the cats out of the bag

well willie let the cat out of the bag, our church came to interview us on camera and willie let it out that were getting another child. So i made him tell all the kids Everyone was so excited in the house, all our helpers were dancing around, a real shocker for me. our adult children took it fairly well, i think they have given up on us and realize were in this for the rest of our lives. His name will be Ezekiel Miguel , he is a little person and is on a ventilator. I am a little nervous about the work load another child on a vent will be but i know we will look back and see why he came into our lives