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Thursday, April 14, 2011

Wednesday

Day three of the job got a new trainer. She is very good. This job is slightly overwhelming. There is so much to learn. Called the house emily and jace got into trouble tonight. The didnt come home when they were supposed to. Humph just wish they would use there watch and get home on time. And just do there chores and help out more. Jace got to pull a green card. He helped out alot yesturday with house work and doing his chores. Emily had her state assesments. She says she is doing well at school. Ben told me that he had recess and that he is being a good boy. Ari is ari not much changes with ari. She has been taking,naps lately which I think is a good thing. Eli my little man heather called me on video chat so I could see him,he is my handsome little man. Heather told me he trying to pull hinself up on everything. He is trying to be such a big boy. Everytime I talk to the family I miss them even more. I cant imagine how it must be for them. I love video chat it is alittle rough on video and sound however it is so nice to see everyone. It is so cute what eli does with the phone he puts his hands and head on it like im there with him. He even made some noises as if he was talking to me. Some nights are harder than others not sure why but they are.

I miss being home. Hanging out with heather playing wii in the afternoon just relaxing. Staying up at night watching out shows together. That nice warm feeling when you curl up next to the person you love so very much. The security you feel and the warmth you feel when you look into there eyes and know what they are feeling. I know it sounds kinda sappy but im not a normal guy I am intouch with how I feel. I tell the truth on how I feel. Heather helps me to be me. Peace out sleep well. I may have forgot things but life has been pretty crazy cant wait untill this rollercoaster ride slows down just a bit.

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The past three days

Sunday heather and I went shopping for some basics for my trip. She thought of all the things that I wouldnt of. Scissors, nail clippers, cd player with clock radio. She helped me pack my things. We packed up some of the meals that we made together. It was of the hardest days of my life. Seeing the tears, feeling the raw emotions, getting teary eyed myself. Knowing how much I would miss them and how much they would miss me. I know it will be only seven weeks but this is the longest time that I have been away from them. I love them so much. I know in the long run it will be the best but it's not easy knowing the hardships that lie ahead

Monday my first day at work. It was different but a nice change in the type of work that om used to. I work 8 to 5 monday thru friday so far no weekends. This will be very nice once the family is back together. I went to see a house and it was ok not exactly what we are looking for. Talked to the kids tonight. They seemed to be doing ok. They all miss me . That is to be expected . I hope it settles down at the house. Sounds like things are alittle crazy there.

Tuesday day two of the job. Still going well. Learning lots of stuff. Hopefully these 2 weeks of training go by fast. Talked to the family tonight. Looks like ben got into trouble and the rest of the kids are out of control. I told them that they need to listen to their mom and help out in the house it would be better for all if they get their chores done. And do as there told so they dont get a red or yellow cards. I thought I got thru to them. Emily got a duet in her up coming school play. I am so happy to hear that she got what.she wanted. It just stinks that I won't be able to be there. Jace says school is going well he didnt like his substitute teacher. Otherwise it seems to doing ok. Ben told me he went to recess. And thats what he did all day. Ari is ari. She still is talking loud as she can. Eli had been very tired ever since the atllant trip. He is still gaging I so hope that the ph probe next week tells us something.

Heather Is doing as good as she can. I know things arent easy especially being one adult with five kids. I miss her very much we talk as much as we can however I just want to give her a big hug and hold her. Just to see her smile. She is currently working on a really cool project. I cant wait to see it conplete.Sounds like she has made some more meals. They sounds super yummy. Cant wait to eat them. It always reminds me of home.I cant wait to be home.

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Saturday, April 9, 2011

Today

Well we made it home about 1246 am. We had a big issue with our delay. We had a delay from atlanta to denver due to wind. Then from denver to wichita. Which with the delay we were running low oxygen. After we talked I went to the front and explained the situation. It seemed like they didn't really care. After talking to them they got a piece of our luggage and got the charger out. They then suggested we could use there oxygen and the pilot said no.We were then told that we would have to get off of we didn't feel that we could make it. We told them lets just go.It.was a big mess.they weren't very polite about anything. The one lady said why didn't we carry our stuff on. We told her because there airline messed up and we had to carry about 200lbs of equipment by ourselves. Which was ridiculous because wr were told we would.

Anyways we made it home safe and sound eli is very sleepy. Heck so are we. We spent the day just relaxing. Getting me ready to leave.

The next few months are gonna be rough be away from the family I can already feel it.

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Friday, April 8, 2011

Leaving on an airplane.....

TtToday we leave the big city of atlanta. We accomplished alot while we were here. Eli got his surgery done.35ml of blood, skin scrappings, urine samples, muscle biopsy, spinal tap. Now we wait. Dr shoffner will be doing 26 different test. We will know the results by the end of june.

We appreciate the southern hospitality. The ronald mcdonald house was really nice. We also got together with one of heathers friends that live in the atlanta area. It was really nice to meet them. We had dinner with them and went to the zoo. They were very nice it was nice to talk with someone living there and have a good time and just relax.

We willbe home late tonight. We will hang out with the kids on saturday before I leave on sunday. I have accepted a job in kansas city. This is a good move for us. It will allow eli to get the care and allow the family to be together more. It is a great opportunity for us. It will be rough being away from the family. Hoping to get back as often as I can and we will talk daily.

Sometimes you have to make sacrifices in order to ultimately get what you want in life. It's a small one to ultimately be together. It's also a short time.

Have a peaceful night.

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Wednesday, April 6, 2011

Wednesday Surgery

Today is eli's surgery day.He will be having a muscle biopsy, spinal tap, blood, urine and skin scrappings. It is just one more step to finding out what's wrong with my tiny man.We arrived at 1235pm. He went back at about 255pm. Things seemed to go well. They did a spinal block and some local anestia. He is soar and really fidgety however overall he is doing as well as we can expect. We were there for about 6 hrs. We are totally spent. We will be headed back to the ronald mcdonald house after med pick up.

I would like to say thank you to all who made this trip possible and to all who have shown us that there are so many generous people in the world that have us in there thoughts and prayers. We can only say thank you. We are so humbled and blessed to have met and connected with and reconnected with on this journey of ours. Many thanks and positive thoughts and prayers go out to all of you. May tonight be uneventful for all.

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Tuesday, April 5, 2011

Tuesday updates

The day started at 8 am and we got food we then traveled to lp RMR. It is a test that determines metabolic rate at rest. It also checks on how much oxygen he breaths and how much carbon dioxide he breaths in. To help determin how many calories he is burning during resting.

we then saw dr shoffner. He is awesome. For those of you who don't know him he is a neurologist, a is board certified in Neurology, Biochemical Genetics, and in Molecular Genetics and directs the Molecular Laboratory at Medical Neurogenetics. He is very good he llooked over all the medical records.he knew all about eli and about our journey. He wants to do a muscle bibiopsy, spinal tap, some blood work, and skin scrapping. He wants to rule out all he can.

We also went to pre admission to get the remaining paperwork done fora tomorrow.Went back to rmh relaxed abit.now getting dinner.more updates when we have them.

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Monday, April 4, 2011

Todays travels

Man it was a rough night. Mr eli decided it was a good idea to wake up at midnight. He was very upset. It took over an hour to get him to calm down. Changed two diapers and rocked him. He finally went to sleep.

We woke up about 230 and took showers. Got to the airport around 445 went in. I forgot how heavy the bags were luckly we had a friend with us to help us on our way. It was a mess. The airline didnt open on time,they didnt have an assitant for us. We waited almost 40 minutes and we finally got someone to help us. The second guy at the counter was rude. I had to let it go lack of sleep and being impatient due to there messup really got under my skin.

So we finallu make our way to the security check and of coarse they were busy as could be. Our assistant said that our friend could get a gate ticket to help us with all our stuff. No one said we could do that. It took forever to get thru security. They did a check thru all our med bags because we didnt want things to go thru the machine. That didnt make them happy. However we tried to call the day before and could not get a hold of anyone.

we got to the terminal and got to load up early.we also got to move to better seats. Eli did well on the first leg. He slept for most it. Now almost a three hour layover. We made it to atlanta about 430. The flight was delayed by about an hour and a.half due to weather in atlanta. It was such a mess once we landed. There was no one there to help us with our bags as we were told. Heather had to stand outside in a smoking area while I got the rental. The airline wasn't very helpful we will be filling a complaint.

We got to our ronald mcdonald house and ate dinner and met some really nice people. The let us know that we could stay at the other one that is much closer to the hospital. So we took it and now we are headed to bed. Goodnight all. Will post some after.appointments.


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Sunday, April 3, 2011

Updates

HyOn thursday we visited with our new dme and the respitory specialist told us she would l
ook into it. We called them initially and they told us we could not get it. They said that it would take two weeks and cost an umbelievable amount. The specialist called many people and got it for us at the last minute.

I had to run to the doctors and get all papers since we thought we were driving.major busy. Heather spent 2hrs on the phone calling everyone to get things ready while I was getting docs to sign paper.

We head to atlanta tomorrow. We need to be there at 4 am for check in. We will be able to take all his medical equipment on the airplane. We have alot of things to take. We have spent the last two days packing and getting things taken care of. We are exhaust beyond exhausted. I will post again tomorrow. Sweet dreams all.

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