shhh !!!the h word

zeke has been on the homevent {the acheiva} for about 3 weeks, if he has a good one more week they will talk about the h word.. we do not want to say it or it may jinks him. so say a little prayer its been a long and expensive haul, back and forth to little rock. God has taught me many things through this though, mostly that there is a reason for everything.

school monday

ok so i am soooo excited , school starts monday. i have not blogged most of the summer because we had a family crisis i cannot share about and have been very depressed, when i get down like this i cannot write. I am feeling a little better and learning a lot about myself even though our crisis is not over yet. As far as zeke, things are pretty good he is still in the hospital they are getting the vent i told them about. In fact the unit is pretty excited about it. It claims that babys as little as 6 lbs can use it. The home vent they have tried him on says 12 1bs. He is 16 1bs but his lungs are like a infant. It has had to go through all the hospital committees and they all have to train on it so it most likely be another month. He will be the first baby at our hospital to try it. They also have asked me to be on a advisory board for a group about children using high technology. I had the discharge planner come to me and tell me what special little boy he is and that there is reason he is there at the hospital, it helped me to hear that, i get so down that he cannot come home. Estie is going to school full time this year, ha ha on the docs who said she was not compatable with life.

summer burnout already?

were not even halfway done with summer and some of our workers are already burning out. I have a hard time understanding why, when every morning they sit eating their breakfast , socializing with each other and getting paid, while willie and me are eating on the run getting all the nonwaiver kids ready for the morning.....there is something wrong with that picture. I am tired of talking to them about it I guess they need to get a factory job then they will see what work is. On the bright side they think they found the reason zeke is not making it on the home vent. He needs a longer trach, so one is being ordered. Hopefully this will work, and we will be closer to him comming home. the boys went on their mission trip and had a good time. We all enjoyed the quiet of them gone. We all had fun at our churches {the journeys} 4th of july , they had a petting zoo and diamond and the poney kissed. Levi and his friend had their survival trip for 3 days, went into the woods with nothing but a tarp and some water, ate turtle and bugs i think, yuK, They lasted until it down poured on them i was very glad when he came home. Its hard to have a 18 year old who still has another year of high school left living at home. They want their independence and we still want rules.

summers here ,update

summer is here the kids are out of school, and we are all having a rough time getting use to each other home everyday. Zeke is still in the hospital on the hospital vent, although rumor has it they are going to try him on the home vent next week, the gas price is killing us, for i try to go see him at least 3 times a week, its physically and emotionally draining. 3 of the 4 bubbas, which fo those of you who do not know what a bubba is , in our house its 4 fourteen year old boys. anyways 3 of them leave on a mission trip to the appalachia mountains, we are excited for them and it will be nice to have a break from them, those of you who have lived with teenage boys should delight with us.

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

johnny cash

i really never liked johnny cash but he came to our house last night, or should i say his impersonator, i think. sang with the kids they loved it !

life

today my neighbor and friend lost her adopted special needs little girl, she was 7, some people would say her life had no value, she could not talk, walk or even move, she loved her videos she gave smiles to those she liked. there will be a void for those who knew her.

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