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Saturday, March 23, 2013 3:03 PM CDT

Everything is going great for Job. He is in Tenn. this weekend participating in Hunting for a Cure (www.huntingforacure.net) which raises money for St. Jude's Childrens Hospital. He is looking forward to his next birthday which is May 2nd. He will be 15 years old.

This week has been spring break and Job has enjoyed sleeping in every morning for a change. Nicole graduates from High school this year and is going to attend the University of Central Arkansas this fall.

Although I do not post many updates here anymore, we continue to read the guestbook all the time. You can also look us all up on Facebook.

In the photo above, Job had the priviledge of participating in a Red Stagg hunt this winter in Mississippi. Sorry Karen McIntyre for taking so long to post this photo.

God Bless,
Tina

Tuesday, July 17, 2012 7:23 PM CDT

Written Jul 11, 2012 11:21am

Job is being admitted to Arkansas Children's Hospital today. They think he has chicken pox.

It has been about 2 weeks since Church Camp, and they said the incubation period for chicken pox is 2 weeks. So that could be where he picked it up. Who knows, well God knows. lol

Anyway please send up prayers that it will be a mild case.

Dr.s were just getting ready to get some of his Immunization back up to date. They were all wiped out when he had his bone marrow transplant.

God Bless all of you, Grandma Glenda

----------------------------------------------------
Written Tuesday, July 17, 2012 7:23 PM CDT

Job did have chicken pox and is still in the hospital. He's getting IV Acyclovir and Vanc (for secondary infections). Thankfully he has not had any complications. Yesterday they tried to switch him from Vanc to an oral antibiotic and he had a serious reaction to that medicine. They gave him 50mg of benadryl via IV and within 30-45 minutes later he was back to himself again. It caused him to have shortness of breath and chest pain which we believe caused him to have a panic attack. It was all very serious for a little bit there.

All is going good now and he should be out of the hospital by Friday, July 20th.

Tina

Monday, March 26, 2012 8:38 AM CDT

Job is doing fine now.

In fact he just came back from hunting in Tennesse. Where he got his first turkey ever. It had three beards, Spurs were an inch and a quarter and an inch and five sixteenths. He recieved points for the beards and the spurs and recieved enough that he won the tournament. He won a full body mount for his turkey. Now his mother is wondering where she is going to put a full sized dead bird. lol

May Jesus be with you all,

Grandma Glenda

Friday, February 24, 2012 7:14 PM CST

We got Job's test results today and the tumor was unfortunately malignant. The cancer is called "mammary analogue secretory carcinoma of salivary gland." That's the bad news. The good news is that they got all the margins of the tumor during the surgery and the lymph nodes that they took out came back negative, so we're focusing on the good news. He may have to have radiation and some more surgeries, but we won't know anything until next Friday (March 2nd). The doctors are meeting on Monday and are coordinating with their counterparts in San Antonio and in the other parts of Children's Hospital in the meantime, so just because we won't know anything for a week doesn't mean that the doctors are working hard to come up with the best treatment plan for Job.

Job is a tough young man. His response to this was, "ahh its fine you just gotta do what you gotta do to get through life." He's my inspiration to keep my chin up when dumb things get me down, so that I can be there for my family when difficult things happen.

We continue to need your prayers, as always and will keep this updated as we hear anything.

Love to all,
Aunt Tammy

Tuesday, February 7, 2012 9:59 AM CST

UPDATE:

February 7, 2012

Well the Doctor told Job McCully he could go home today if he felt comfortable going home with the drainage. Job said that he had an over active dog an thought it might be better to stay one more night. So the Doctor agreed.
He is doing well. This is a hospital, so any one that has ever been admitted, you know they come in all through the night and poke and prod. But he is sleeping now.
He ate breakfast 3/4 of a breakfast sandwich an grape juice.
Our Pastor Rocky Sheldon of BAG came by this morning. Job was asleep, well I was to (lol) but we had a good visit. Talking about the awesomeness of our God.
Love to all, and thanks again for all of the love and prayers.

February 6, 2012

PRAISE THE LORD!!!
Job is out of surgery, everything went well. It will be anywhere up to 10 days before we hear about the tumor.
He is feeling fine except for some understandable pain. Which they are treating with morphine, but it makes him itchy. He ask Mom if they could switch to oxycodone.They gave him benadryl for the itching.
Could go home as early as tomorrow. Just have to wait and see.
First of all: Thank you Almighty God for all that you do for us lowly humans. There are so many things that we take for granted.
Second: All of you are wonderful. Thank you so much for your prayers and your love.

Glenda Osborne (Job's Grandma)

Monday, February 6, 2012 7:04 PM CST

PRAISE THE LORD!!!

Job is out of surgery, everything went well. It will be anywhere up to 10 days before we hear about the tumor.
He is feeling fine except for some understandable pain. Which they are treating with morphine, but it makes him itchy. He ask Mom if they could switch to oxycodone.They gave him benadryl for the itching.
Could go home as early as tomorrow. Just have to wait and see.
First of all: Thank you Almighty God for all that you do for us lowly humans.There are so many things that we take for granted.
Second: All of you are wonderful. Thank you so much for your prayers and your love.

Glenda Osborne (Job's Grandma)

Tuesday, January 17, 2012 9:50 PM CST

Surgery February 6,2012

Job has a mass in his Parotid Gland. They have scheduled surgery for Monday February 6, 2012. They say the surgery will take several hours. It will be a very meticulous surgery since it is among the nerves that control the face. When you clamp your teeth together and feel that muscle it is right in there.

Please pray that the Parotidectomy goes well, that it doesn't damage the nerves or anything to his face and glands, and that it isn't Cancerous.

I believe in the power of prayer. All my request are known to you, oh Lord, my God. You still hold Job in the palm of your hand. My trust and my hope is in you, and you alone. May your will be done.

Grandma Glenda

Monday, December 12, 2011 9:26 AM CST

Yesterday December 11, 2011 was Job's 4 year anniversary for his double lung transplant. Soon he will have his 4 year evaluation in St. Louis. He has been doing great, longest time out of the hospital since he started this journey, the middle of 2002. He continues to go once a month for I.V.I.G.'s and every 3 months for bone density treatments. But, no overnight stays. Praise the Lord for that.

He and his sister Nicole were in a Christmas play Sunday that his Mom worked really hard on. I will try and post some pictures on here later of the play etc. All of the children did a wonderful job, and I hope had a lot of fun.

A great big hug and thank you to all the ones that have posted on Job's websites. The love you all share with us is amazing.

Tina started the caringbridge sites. Other people have sites on Facebook: Prayer's for Job, Job McCully is my hero, and I love Job McCully. I love popping over there and reading all that people share.

Love to all, Merry Christmas and Happy New Year.

Whatever your Holiday is that you celebrate at this time of year, May you have a blessed one. May God Bless each and everyone of you.

Grandma Glenda

Friday, August 19, 2011 1:27 PM CDT

School started this week. It is hard to believe that Job is in the eighth grade. Nicole (his sister) is in the eleventh. She only has this year and one more of high school, then it is on to college. Her mom is already getting antsy. lol

Job has been doing wonderfully. He went for his three and a half year evaluation in St. Louis in June. Everything went great. Again he didn’t have to have the bronc. That is where they sedate him and go in and take a piece of his lung to check it out, so it is always a good thing to get to skip that.

We can’t respond to each person individually on here. But, each individual is greatly appreciated. We love to read the responses. To know that yes Job went through a lot, but people are being touched by his story. People are seeing God through Job’s story. To me that is amazing. Myself I look at him and see him laughing, running, sleeping and just doing NORMAL stuff and it still brings tears to my eyes to know what a miracle child he is. To be able to see just how loving God is.

--Gma Glenda

Monday, May 23, 2011 10:49 PM CDT

Thank you for all your encouraging words and prayers. I am so happy to tell you that Job continues to do well and gets stronger and stronger every day. He celebrated his 13th birthday this month (May 2nd) and had a wonderful time having some friends sleep over. He is looking forward to school letting out for the summer so he can sleep in every day.

Tomorrow Job and his dad are headed to Petit Jean Meats in Morrilton bor Ambassador's Day. They are being treated to lunch and other activities including a tour of the plant. Job loves their hot dogs and is excited to get to watch them being made. Nothing like a Petit Jean (or Cedar Falls) hot dog.

Thank you for all your prayers. We continue to pray for Job's health and physical growth. Please join us in this prayer.

God Bless,
Tina

Monday, February 7, 2011 9:20 AM CST

Hello everyone!

Job is doing wonderful. He had his three year evaluation for his lung transplant this past December. He had a great check up and continues to get better and better every day. I really appreciate all the posts on the guestbook. We still read them all the time, even if we are not posting very many updates lately. Thankfully our just pretty routine lately, and I praise the Lord for that.

Job is doing well in the 7th grade. He recently competed in the school wide spelling bee and came in 3rd place, then went on to compete in the regional spelling bee and came in 2nd place. He won a $75 savings bond, $15 cash, and a huge trophy. Nicole turned 16 in January and is driving by herself now. Wow, how time flies.

God Bless,
Tina

Wednesday, August 25, 2010 10:29 PM CDT

Everything is going great. School started last Thursday and its going to be a great year. Job is in the 7th grade and Nicole is in the 10th. Job is manager of the 7th grade football team, which he is very excited about.

I start a new job tomorrow which is a great new chapter for our family. We've all came a long way over the past few years.

Tina

Monday, June 21, 2010 11:26 AM CDT

July is National Hot Dog Month and Petit Jean Meats (www.petitjeanmeats.com ) out of Morrilton, AR is kicking off their National Hot Dog Month promotional at the Arkansas Travelers (www.travs.com) game Friday, June 25th. Petit Jean Meats has invited Job to participate in this event and has arranged for him to THROW THE FIRST PITCH in the game. Game time is 7: p.m. Come on out if you can.

Then on Saturday, the 26th we're off to float the Buffalo River. YAHOO!!

Tina

Saturday, June 19, 2010 9:29 PM CDT

Job's evaluation in St. Louis went great. Job's test were good. He didn't have to have the bronc scheduled on that Tuesday.

Tina, Job and Drew (a friend in St. Louis) spent Tuesday at Six Flags. It started to rain and they waited in one of the shops until it stopped. When they came out to play again most of the people had gone home. They pretty much had the park to themselves. Job said him and Drew would ride the rides time after time without having to stand in line, and sometimes not even getting off of the ride before riding again.

Job is at a concert right now with the youth Pastor Joe and some of the other children in his church group. Nicole didn't get to go, she is at her baseball tournament. They have won three games so far and working on the fourth. Tina and Rob (i.e. Mom & Dad) are there with her. Mom said it was lightning there and with every lightning strike they have to wait thirty minutes before playing again so they could be there for awhile.

Job has text me and said that he is having fun and enjoying the concert.

Tha​nks to all of you that have been praying for this family. Without your prayers this would have been a whole different journal entry.

Love to all and Gods blessings go with you.

Grandma Glenda

Sunday, May 30, 2010 7:08 PM CDT

Hello Everyone,
I see that it has been a month since this website has been updated.

I have been following a few of the other Children's websites. There are way too many kids that are fighting for their lives. These are three of the ones I watch. Please keep them and their family's in your prayers.
http://www.caringbridge.org/visit/ryanpatrick
http://www.caringbridge.org/visit/brodyjohnson
http://www.caringbridge.org/visit/zacharymettle
Other children have lost their battle. Please remember their family's

As for Job he is doing well. Finally getting the bone density treatments.
His bones are very fragile.
He will be in the seventh grade next year. I think that is awesome.

Him and his sister have already set up the pool and have been having a lot of fun.

May Jesus be Lord of your lives, so that you may have the
peace, love, joy, and faith that only He can supply.

Love to all, thank you so much for the prayers and the feedback. We look forward to the messages you send. The testimonies that you share with us. You are all such a blessing to us. It lets us know that Job didn't go through all of that for nothing. Not only was our faith strengthened by Job's journey but so many of you have told us that it has strengthened your faith as well.
Again thank you all so very much,
Grandma

Sunday, May 2, 2010 12:55 AM CDT

HAPPY BIRTHDAY JOB!

Job's birthday is today. He is 12 years old, and doing Fantastic.
He had a few friends over to spend the night Friday night. Ice cream and cake and each of them made their own personal pan pizza. They played video games on the projection screen and had fun with silly string. He finally got a cell phone. He has wanted one for awhile now. lol He also got a Nikon 12mp Cool Pix Digital Camera and money etc.

He starts his bone density treatments Monday. He will get a treatment Mon, Tue, & Wed. Then every 3 months. I think.

We love hearing from all of you, you are a blessing to all of us.
Love and may God richly bless each and every one of you.
May God keep you safe, Happy and Healthy. Spiritually as well as Physically.
Grandma

Monday, April 26, 2010 8:27 PM CDT

Thanks for all the warm wishes from everyone. I didn't even realize that our show was on last night until a kid at school told me today. I am glad to say that Job is doing wonderful. He was in a Variety Show at Anne Watson Elementary this past Friday (3/23/10) and sang "Another Brick in the Wall". It was a hoot. You can watch the video below:

Wednesday, March 17, 2010 11:36 AM CDT

Job went for his monthly I.V.I.G.’s Monday and they x-rayed his foot to make sure it had healed so they can start him on the infusions to help his bone density. His bones are so tissue thin, we have to be very careful not to roughhouse with him because we could break a bone very easily. He was just walking down the hall when his knee gave out and he broke his foot in 3 places. He had to be in a cast for 7 weeks.

He is doing fine in other ways. Going to school and enjoying playing with friends.
He is almost 12, his birthday is May 2nd. I’m trying to come up with ideas that don’t involve video games. lol Every time he has the money a video game is what he buys though so he probably has all of them. lol

It’s hard to believe that his journey started 8 long years ago. He had just turned 4, June/July of 2002. A lot has happened it those eight years. God holding our hands (and literally carrying us) through all of it. I guess we could have gotten mad at God and asked him why he was allowing this to happen. But WHY! What would we have done then? How could we have coped? Who could we have trusted in to calm our troubled spirit. We KNEW God was the only one that could bring Job through this. Life or Death, God knew best. God’s purpose was greater than what we could see. But God didn’t let us go through it alone, Like he was in the fiery furnace with Hananiah, Mishael and Azariah (No their real names were not Sharach, Meshach, & Abednego) He was with Job and us.

When Job’s heart stopped for ten minutes (we thought 8min but the Hospital papers said 10min) We asked Job if he remembered anything and he said,” all I remember was being on this cloud, the top was bright white and the bottom was orangesh red like the power of God” his mother Tina asked him if he was scared and he said, “no I was just Amazed” . We have had people sign Job’s guestbook from around the world, People calling the home phone, telling testimonies of how God has touched them through Job’s story. God is real and He loves you and He wants to be a part of your life.

-Grandma

Saturday, February 20, 2010 8:06 PM CST

Well so much for me finishing the update when I got home.

Job has been feeling better with each day that passes, but he hasn't went back to school yet. He still had a bad cough and diarrhea. Believe me the two don’t go well together. Not at school or out and about. lol I think that has resolved so maybe Monday he can go back to school, wait a minute he has a Dr. Appointment Monday at 1:30 so maybe a half a day.

He got his new glasses in today, Reading glasses and far far away glasses. He was happy that they came in because he can see better now. He likes his far away glasses because they transition in the sunlight. He went out into the sunlight and then hurried back in and looked in the mirror to see the color change. lol His old reading glasses had both ear pieces broke and his sister taped them up.

He needs a haircut. His hair is bushy. Nicole (Job’s Sister) got the hair gel and went to work on him a new doo. lol He looked like he had stuck his finger into a light socket.

Today is his Mother’s birthday. The kids each picked her out a card and wrote sweet things on it. Then Nicole helped fix her a special dinner. They (and Dad Rob ) got her a new lens for her camera and stuff, I bought her a new office chair.

Well not much to tell and then on the other hand so much to tell. Yeah there isn’t a lot going on but PRAISE the Lord everything is NORMAL. Job spent ONE night in the hospital, shortest stay ever. Everyone that knows one of these kids that have been through so much, knows that things can change in a heartbeat. You just have to be prayed up & stay in tune with God or you can be knocked off of your feet in an instant. God is God in the good times, and He is God in the bad times. God will never let you down, He will never forsake you or make you stand all alone. Praise be to my God the God that hung the world on nothing, The God that told the Sea you can go thus far and no farther. The God that sent his Son to die in my (your) place. Eternity is as close as your next heartbeat, are you ready. Do you KNOW my Jesus? He is coming soon. Ready or not He is coming!

Tuesday, February 16, 2010 10:32 AM CST

Well Job has been sick for about a week. He was admitted to A.C.H. 2/15 because of shortness of breath,fever,pneumonia. He has already completed a round of antibiotics. Finished up on Sat 2/13. This morning he is feeling better. He is off of the oxygen for now (a test run). Nasal swab was negative, blood work good. So it looks like a short stay this time, hopefully.
I want to thank everyone for keeping Job in your prayers. Wheather you knew of this or not.
Well as I was typing this the Dr. came in and said we are going home, so I will finish this when we get home.
Thank you Jesus, We Praise Your Holy Name

Friday, January 29, 2010 8:22 AM CST

Well it has been a month and a half since our last update. Everything has been going well. Job has been going to school and doing great. This morning however I had to tell him that the school was CLOSED because of all the ICE. lol

He gave me a FIST PUMP and laid back down. lol
Then he said I think I will get up anyway.

His field trip was today, they were going to see the Egyptian stuff. Maybe they can do it another time and not miss out completely.​

I want to tell everyone that we love all of the guestbook entries. People from all over the world. It is so wonderful to know God has touched so many people with Job's story. God was so powerfully active and so personal to us through that time that I am still in AWE.
It has also helped me to be able to see Him around me in all things big and small. To know that God cares about EVERYTHING in your life. He cares about what makes you happy, sad, blue etc. He cares, He really cares. His love, His peace everything about Him is so amazing.

Thank you everyone for letting us know Job's story has touched you.
May God bless each and everyone of you.
Grandma​

Monday, December 14, 2009 9:50 PM CST

Job's test and evaluation went so well today that they cancelled the lung biopsy (bronch) that was scheduled for tomorrow. Just a couple more clinic appointments and we are finished!!!

Praise the Lord!
Tina

Sunday, December 13, 2009 10:26 PM CST

We are in St. Louis for Job's 2 year evaluation. We will be at the hospital all day Monday and Tuesday for testing. Job is very excited for everyone to see how well he is doing expecially how well he is walking.

Praying that all test results are excellent.

Tina

Sunday, December 13, 2009 10:24 PM CST

December 9th

All is going well for us. We are headed to St. Louis soon for Job's two year evaluation. We are going to Chicago afterward to visit Aunt Tammy.

Job is doing great in school. He will begin bone density treatments soon to help strengthen his bones. We just have some dental work to finish up first. We were told not to have any dental work during the treatments.

I have updated the photo album to include so photos of Job and Nicole riding a horse at my dad's

God bless, Tina

Wednesday, October 28, 2009 8:15 AM CDT

Well October is almost gone. Funny how time can fly by sometimes and go so slow at other times. 2007 was like 3 or 4 years long and then this year is flying by.
But Praise God, Job has only been hospitalized for one week this year (H1N1). Since his sister had gotten sick first they caught it early.
We go back to St. Louis December 14th for Job's evaluation and that always brings his journey back into focus. A time we never want to forget. A time when God done so many miraculous things for Job and our family. A time of intenseness with God. A time of intenseness with God, that I want to be on-going. Just without the sickness & pain. Each morning I have to remind myself, don't start that until you have spent time with God, Reading your Bible & praying.
I know Job's journey started in 2002 and it was very intense then as well, but we would have a break ever once in awhile. 2007 not so much. But I can see now where God started preparing us for such a journey. Dreams of tornados, this one was so huge, God said hold my hand, trust in me and I'll see you through. Messages from God, "as I was with Moses so shall I be with you" & "your faith and trust is not in Dr. or machinery your faith and trust is in me, I hold Job in the palm of my hand, I was with him before, I am with him now & I go before him, I am with him always". God is a very personal God. He cares about us. He loves us. He is an awesome God! He is coming soon! Are you ready?
Even so come Lord Jesus, Grandma Glenda

Wednesday, September 30, 2009 10:41 AM CDT

***New Photos***
Job (and the rest of us) attended a Wild Boar hunting trip with Hope Outdoors this past weekend. It was hosted by Cuz and Cuz Wild Boar Ranch in Searcy, Ark. We all had a great time and Job killed his first wild boar.

Job is doing great. He recovered beautifully from the swin flu and is walking around everywhere after getting his cast off a couple of weeks ago. It only took him a day or two to leave the walker behind after the cast came off. He was really proud to finally make it a whole day at school without a wheelchair or walker.

I think we have finally caught up on all the school work. Missing two and a half weeks of school is tough.

It is so cool to hear from all the people around the world who have been touched by Job's story. Thank you all for sharing with us.

Please remember to pray for Jessica Easley (www.caringbridge.org/visit/jessicaeasley). She was suppose to be at the Boar Hunt with us. We all missed her very much. We met her in the spring at the Hope Outdoors Turkey Hunt. She bounced around and was full of life at the camp that time. If she had pants on, you would never have known that she had already lost a leg to cancer now she is fighting for her life. Please pray.

Tina

Tuesday, September 22, 2009 4:17 PM CDT

Please pray for our friend Jessica Easley (www.caringbridge.org/visit/jessicaeasley)

She is fighting for her life right now! Please pray for a miraculous healing first and formost. If it is God's plan to take her on to heaven, please pray for a painless passing.

Tina

Monday, August 31, 2009 10:11 AM CDT

We're home! Job didn't even act like he was sick while in the Hospital.

One of the Nurses said when she heard that he had the H1N1 virus, she expected to come in and find him flat of his back feeling really bad. Instead she came in and he was laughing and playing video games.

Thank you Lord Jesus for a heads up so we caught it early.

Although Nicole was the most sick it really saved Job a lot of misery.

Nicole and Tina went back to school today, both feeling fine.

Job and I slept in for a bit, Job a little longer than I did. lol

Thank you everyone for your love and prayers. You have been through a lot with us. You have the kind of love that keeps on giving.

Love to all, and may God bless you all,

Grandma Glenda

Thursday, August 27, 2009 10:06 PM CDT

Nicole is feeling much better and Job is doing fine. He has a cough and sounds crackly, but overall he is really doing fine. He feels good and is eating great. He can't get enough blueberry muffins from the hospital room service. I kept having to remind him that he has to eat something beside blueberry muffins.

He spent the whole day playing video games and we watched one movie.

Tina

Wednesday, August 26, 2009 10:39 PM CDT

The St. Louis Trip has been postponed.

It is strange seeing Nicole sick. She NEVER, well hardly ever gets sick. So when she started complaining about not feeling well, I knew something was up.

It is just like God to give us a heads up though. If Nicole hadn't already been tested and was positive, we wouldn't have been watching Job so closely.

When Job woke up and said that he had a scratchy throat, Rob grabbed him up and took him to the ER.
He also tested positive. His lungs look good and he is getting IV Tamiflu.

I dropped Tina off at the hospital this evening so she could spend the night, and He was full of vinegar playing on the computer and then wanting the PlayStation hooked up. Lol

But like with Nicole, it comes and goes. She was playing with the dogs one minute and the next was flat of her back.

We are all on Tamiflu. Job of course has the IV kind.

We serve an awesome God. He gave us a heads-up and seen that we were all taken care of. I don't know why we have to go through certain things. But, I know God loves us and is in full control.

Thank you for all of your prayers.
Grandma, Glenda Osborne

Tuesday, August 25, 2009 5:02 PM CDT

Job's tested postitive for the flu today. He was admitted to Ark Children's Hosp room 4C05. Doc says 99% sure its H1N1. They are giving him Tamaflu via IV. Lungs sound good and x-ray looked good. They are also starting respiratory treatments (albuteral, flutter, etc.).

Monday, August 17, 2009 9:43 AM CDT

Job got a cast on his foot last Wednesday. Thankfully, it is a walking cast so he is able to keep his strength up. He does have to use his walker for safty reasons, but he is up walking around pretty good. The first day or two after the cast was placed his foot was still really sore and he said it hurt too much to walk, but after that he has been fine with it. It still hurts on occasion and itches, but overall is fine.

He has to keep the cast for 5 weeks, which means it will come off on Sept. 16th. To him, that sounds like forever, but I know that it will pass quickly. Its already been almost a week.

We head back to St. Louis in two weeks for another evaluation. I hope all goes well, I'm sure it will.

Tina

Friday, August 7, 2009 11:14 PM CDT

I took Job back to the doctor today because he still could not even move his foot without an extreme amount of pain. Rather than do another X-Ray in the office, Dr. Martin sent us to the Conway Regional Imaging Center. A few hours later I received a call from the nurse stating that they found three fractures. We have an appointment with an ortho doc on Wed. and Job was instructed to not even try to use his foot.

The nurse also told us we really need to discuss Job's osteopenia with his pediatrician and oncologist. He has very thin bones because of the steroids and medical issues. Actually Dr. Faro had recommended last December that we discuss a treatment plan with our endocrine doc regarding Job's bone density, but out endocrine doctor felt that physical therapy was enough. So no treatment was started, except Job's physical therapy.

So much for walking in to school on the first day. Man o man, he was so much looking forward to that.

Tina

Friday, July 31, 2009 5:36 PM CDT

Yesterday, Job was walking in the hall yesterday and said his knee gave way and caused him to fall. He hurt his foot pretty good, but according to the x-rays there were no broken bones. The doc said for him to stay off of it for a few days and come back for more x-rays if he is not walking on it in 10 days. So we dusted off the ole wheel chair and Job has been laying around like a fat cat letting us cater to his every need. Grandma fixed him up on a little ironing board so he could keep his foot elevated. Pretty smart i have to say.

Then today, Nicole and I were back at the doctor's office for what we thought was a spider bite on her leg. Turns out the doc is convinced that it is staph. He took a culture of it and got her fixed up with antibiotics. We are to go back on the first part of next week if we are still concerned about the spot.

Whew, what an active 24 hours we've had. Now, off to ball games. Nicole has a basketball tournament this weekend.

Tina

Thursday, July 16, 2009 2:28 PM CDT

Job, Nicole and Grandma Glenda were in a car accident on Sunday, July 12th. Praise God that no one had any serious injuries. Gma's knee is banged up and her chest is sore, but the kids don't even have any bruises. The folks in the other car are fine also, but may have more minor injuries.

I have included some new photos in the album from the 4th of July. Job continues improving and is walking around everywhere now.

God Bless,
Tina

Tuesday, June 30, 2009 9:24 AM CDT

Job is continuing to grow stronger and stronger. He rarely uses his wheelchair and now he hardly even uses his walker at home. Its an amazing difference between this summer and last summer.

We watch the movie "Fireproof" last night and it is a wonderful movie. I recommend it to everyone!!

Let us unite together to pray for our nation. Pray using the scripture below as your foundation.

2 Chron. 7:14
"If my people who are called by my
name will humble themselves and pray
and seek my face and turn from their
wicked ways, then I will hear from
heaven and will forgive their sin and
heal their land."

God Bless,
Tina

Monday, June 22, 2009 4:36 PM CDT

Philippians 4:8
Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.

Knowing the word of God, but not doing it, that is what made the foolish man foolish in the parable of the two builders (Matt. 7:24-27). The man who built his house upon the sand is an illustration of someone who hears the Word of God, but doesn’t do what it says. Someone who doesn’t put the Bible into practice in their own life is foolish and will not stand when the trials of life come. Anyone who listens to the Word, but does not do what it says deceives himself (James 1:22).

After discussing the above in our D-Group (Sunday School Class) on Father’s Day, the kids and I jumped in the car and headed to Bald Knob Baptist Church to attend worship service with my Dad. In the car we talked about the topics of our Sunday School classes. Job studied about the Baptism of the Holy Spirit. Nicole studied about pride. I asked the kids the same thing I asked our class, “What made the wise man wise and the foolish man foolish?” They came up some of the similar answers most people say about faith in Christ, etc. Then as soon as I started telling them about being a doer of the Word, Job spouts up and finishes my statement as if he’d known it all along; he loved explaining it to Nicole too. Nicole rolled her eyes at him. It all came back to them both after I started my explanation because we have had the same discussion before.

We arrived at the church at about 11:00. Thankfully they were having a meet-n-greet song when we came in so our late arrival wasn’t too much of a disturbance. Once everyone was seated again we sang another song out of the Heavenly Highway Hymn’s. Then it was time for a special. As the lady began her song, I looked at Nicole and she looked at me. It was a song about the parable of the two builders. “Are you building on rock or on sand?” the song kept asking. During lunch, I talked to the kids about the importance of taking things like that serious. That God was speaking to us through that parable.

This morning I found myself at home alone. After getting Grandma and the kids off to the hospital for Job’s monthly IVIG treatment, I decided to relax for a few minutes while I drank my coffee. I surfed around on our DVR looking for something to watch and found “Left Behind” with Kirk Cameron that had been recorded last week sometime. I decided to watch it before I started my house cleaning. There is nothing like watching a movie about the end times and the rapture to get you excited about working for God. Regardless of our different views on how everything will play out exactly in the end, the fact is it will all happen some day.

Once the movie was over, I really need to get busy cleaning up the house. I decided to put the TV on a Christian station as just something to listen to while I cleaned. As I was surfing around, I caught a curious show with Kirk Cameron. It caught my attention especially since I had just watch Left Behind. I know he is a good Christian and thought I would check it out. He was challenging Christians to the scripture Philippians 4:8.

Philippians 4:8
Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.

He was encouraging us to apply this scripture to our Movie and TV choices and encouraging us to pray for Hollywood.

I was convicted. I know that I haven’t been applying this scripture to my choice of Movies and TV programs like I should. That makes me the fool. That means I am deceiving myself. I repented before the Lord and made a fresh commitment to filter everything I watch through Philippians 4:8.

How are you doing on the application of Phil. 4:8? What about another scripture? Has God brought something else to your attention this week that you need to think about? What keeps weighing heavily upon your heart for you to change, but you keep making excuses for yourself? Today is the day to repent. Today is the day to stop being the fool and stop deceiving yourself.

Are you building on sand or rock?

Be a doer of the Word and not a hearer only!!!


God Bless,
Tina

Wednesday, June 17, 2009 10:17 AM CDT

All is continuing to go well for us. Job hardly ever uses his wheelchair anymore. The only time he uses it is when we go somewhere that has a lot of walking especially with hills.

We have gone to Wild River Country a few times so far this summer. The kids both love it. Job loves the Cylcone and the wave pool.

Job can walk about 20 feet with out his walker, but he is still unstable and scare to walk alone. By the end of the summer, I bet he will be zipping all around on his own.

His CMV continues to be negative and his vision and other health issues continue to get better. We return to St. Louis the first week of August for another evaluation.

God Bless,
Tina

Saturday, May 23, 2009 9:28 PM CDT

Rob took the kids fishing in our pond today. I didn't realize that we had so many fish in that old pond. We all had a great time. Rob had to keep running to the store and getting more bait. HA

Thursday, May 21, 2009 2:29 PM CDT

I just mailed the Job's lung donor family a letter. We were required to wait at least 12 months before the writing a letter, but it's been 17 months now. Can you believe it has been a year and a half since his transplant. WOW.

I included some pictures of Job's progress, but I don't know if they will make it through the screening process. Everything has to be anonymous at this point.

We were planning to go camping this weekend, but it is suppose to rain every day. I am trying to come up with another idea for activities. I know Job wants to see a couple of movies that just came out. I may have to sneak over and see Sylar (Zachary Quinto) from Heroes play Spock on Star Trek.

We are all very excited that Kris Allen won American Idol. He only lives about 20 miles from us. Kris Allen is KICK AWESOME!!

Tina

Sunday, May 10, 2009 3:18 PM CDT

HAPPY MOTHER'S DAY to everyone.

I am blessed to be Job's mom. He is doing wonderful and we want to keep it that way. There are now 5 cases of Swine Flu in Ark and 4 of those are within 50 miles of us. So we have decided to take Job out of school.

HAVE A GREAT DAY!!

Tina

Please say a prayer for Ryan Patrick (www.caringbridge.org/visit/ryanpatrick). He sure needs a miracle.

Tuesday, May 5, 2009 12:54 AM CDT

Job is doing wonderful. He is ready for school to be out. He had a great bithday party. We hauled 14 kids to the RAVE to watch the new X-Men movie. Everything went wonderful and he had a great time.

Well, I have signed up to sell Tupperware. Hopefully it will be a way that I can help provide for my family and still be there for Job (and Nicole). Please consider hosting a party for me. You can earn free stuff for youself too. You can be a host even if you do not live in central Arkansas by having an online or catalog party. Please shoot me an email if you would consider hosting a party (tinamc658@yahoo.com). Also, you can also use my website to place orders or request more informtions. Check it out at www.my2.tupperware.com/tinamccully


Tina

Saturday, May 2, 2009 4:38 PM CDT

HAPPY BIRTHDAY JOB

Monday, April 27, 2009 11:36 PM CDT

Job's CMV test is NEGATIVE!!!

Praise GOD!!! Dr. Saylors believe that Job's own immune system is ahead of the CMV and plans to only give him one more dose of Cytogam. After that he will be switched to regular IVIGs.

This is another miracle to add to Job's growing list.

Tina

Thursday, April 23, 2009 10:31 AM CDT

Hey all,

It is so cool to see all the posts from people all over the world. I didn't know that the Extreme Makeover: Home Editon aired in some many countries.

Job is doing great and is continuing to grow stronger and stronger. He took his Benchmark tests last week for the first time in three years. I am anxious to see where he is compared with the rest of his class and age group.

He had fun playing baseball, but I am a little disappointed that it doesn't involve more exercise. Aren't I terrible HA. I was hoping it would be a good way for him to get some exercise while having fun, but it is all about fun only. He is too slow with his walker so they kept pitching him in his wheelchair and wheeling him around the bases. He wasn't even wheeling himself. I was first really pushing for him to use his walker at least some, but finally gave in and just let him have fun. He had a great time. I figure there are plenty of other opportunities for him to walk so I just let it go. He really enjoyed batting. There is just something about smacking a ball with a bat that is very satisfying.

My Aunt (Tootsie Rush, Gma's sister) passed away a couple of days ago. Her funeral is today at 2:00. Please say a prayer for her family, especially her husband Bobby Rush. She suffered for a long time and battled cancer for seven years before she lost the fight.

God Bless,
Tina

Thursday, April 9, 2009 8:17 AM CDT

Job is over his illness. It really only lasted a few hours. He said he tossed and turned until about 2 a.m. but then fell asleep until morning. Yesterday he was fine and felt better and better as the day progressed.

He is back at school today and has his annual PT evaluation this morning. I am interested in seeing how much he has progressed since last year.

I am also excited to tell you all that his CMV level (after going three weeks between treatments) is now at the lowest detectable level!! So now he only has to go in for Cytogam every FOUR weeks. We are also cutting his Lasix in half and hopefully working towards getting him off completely. His blood sugars are doing better and better too.

PRAISE GOD!!
Tina

Tuesday, April 7, 2009 11:19 PM CDT

Job is very sick tonight. He was fine and feeling great until about 7:30 then he feel apart at both ends. He spent the rest of the evening sitting on the tollet holding a bucket. He is finally asleep and I pray that he continues to rest. All has been calm for about 45 minutes so maybe he is over his spell. Needless to say he will not be going to school tomorrow.

Tina

Monday, April 6, 2009 2:09 PM CDT

Job didn't get a turkey this weekend, but he did have a great time. We met a lot of wonderful people and we all look forward to participating more with Hope Outdoors.

Below is a schedule of Job's baseball games. His first game will be this Saturday since he missed last week due to the turkey hunt.

Miracle League Baseball
Junior Deputy Fields
2500 Cantrell Road
Little Rock, AR 72202
501-372-7640

Week 2 Sat. April 11th 11:45 a.m. Rockies vs. Astros
Week 3 Sat. April 18th 8:00 a.m. Rockies vs. Indians
Week 4 Sat. April 25th 11:45 a.m. Rockies vs. Angels
Week 5 Sat. May 2nd 2:15 p.m. Rockies vs. White Sox
Week 6 Sat. May 9th 10:30 a.m. Dodgers vs. Rockies
Week 7 Sat. May 16th 4:45 p.m. Braves vs. Rockies

Friday, April 3, 2009 10:25 AM CDT

Job loves the rain.

We are headed to Searcy today for a turkey hunt with Hope Outdoors (www.hopeoutdoors.org). Job is looking forward to getting his first turkey. Hopefully he gets one.

Thanks for all your wonderful prayers.

Tina

Wednesday, April 1, 2009 9:02 AM CDT

OH, this is now called a CLASSIC Caringbridge website. I was afraid for a minute that I had lost access to this website. I have been updating both for a few months now, but this one gives more freedom to posting html coding if I feel the need.

Job, Nicole, and I are settled in at home once again. Grandma decided to stay with Aunt Tammy for a few weeks since she is off work. I have been sick myself for the past few days which is why I have not been on the computer. It has taken all I had just to keep up with Job's medicine routine with all the IV antibiotics, but I am feeling much, much better today.

Job went back to school yesterday and although he did not want to get up, he had a very good day. He is definitely not a morning person.

Tina

Wednesday, March 25, 2009 6:15 PM CDT

We are officially discharged from the hospital. We are waiting on our home meds to be delivered and then we will be on our way to Michigan.

His biopsy showed no signs of rejection. He is going to get IV antibiotics for two weeks to deal with the infection, but they are going to let us do that at home. We are happy about that.

The meds should be here any minute. Thanks for all your prayers. Job is doing great.

Tina

Monday, March 23, 2009 9:26 PM CDT

Job was admitted to SLCH today because of this infection. He had a little fever again this morn of 100.6. I gave him tylenol at 8:30. It brought the fever down and has stayed down for the rest of the day. His ear hurt more today than yesterday so we are still wondering about an ear infection, but his cough is terrible sounding. Dr. Faro wanted to give him a few doses of Vanc. and hopefully send him home on home antibiotics Wednesday.

We are not sure if we are going to be able to make it to Michigan. We are hoping they discharge us on Wed. so we can still make the trip. The window of opportunity is tight, so we do not have much wiggle room. If it were just school, then the kids could miss a couple days of school, but Job has a treatment scheduled in LR on Monday for his CMV.

He has his bronch in the morning first thing. Hopefully after that we will have more of a plan.

Thanks for your prayers.
Tina

Sunday, March 22, 2009 1:48 PM CDT

We are in St. Louis, but things are going as we planned exactly. Job started running a low grade fever on the way trip last night. I was hoping that it was just a fluke, but this morning his temp was 101.9 so I called St. Louis Children's hospital and of course the pulmonary fellow on call wanted us to go to the ER for some tests. We spent a few hours in the ER this morning. His x-ray looked fine and they tested him for the flu and RSV. They ended up letting us go since we have a whole battery of tests coming up the next few days.

Please pray the fever is from something something simple to treat and that we do not get admitted to the hospital.

Thanks,
Tina

Tuesday, March 17, 2009 12:41 AM CDT

President Job signed his Student Council Agreement last night at the induction ceremony. It was a very nice program. Job stood and gave his presidential speech on leadership quoting Harry Truman and Dwight D. Eisenhower.

I was very proud of him. I have added a couple of photos from last night.

He still has a cough, but it is getting better.

Tina

Thursday, March 12, 2009 9:40 PM CDT

Job has been sick the past few days, but we went to the doctor today and he actually had a good check-up. His x-ray looked better than it did two weeks ago and he was negative for the flu and RSV.

He is getting so strong. I just know that it will not be long before he is walking around freely. He crawls all over the house now and is able to pull up to a standing position from the floor. He also like to use one of the office chairs to wheel around it. I let him use it because it is really good exercise for his legs. Unlike his wheelchair, the office chair forces him to work his legs and stomach muscles to get around. Our new rule is no wheelchair use in the house. It works for the most part except when he first wakes up in the morning. I am a softy then.

His 15 month evaluation is March 23 and 24. After we finish in St. Louis then we are going on up to Michigan to visit Aunt Tammy. We were going to try that back in December but her boys ended up getting some bug so we thought we'd better wait for another time.

Job joined a baseball team in Little Rock called the Miracle League. I can't wait for him to start playing ball. I really think he will love getting back on the field. We are working on his batting. He does a pretty good job in PT with the plastic equipment. I dug his stuff out of storage the other day so we need to get out in the yard and practice. We'll probably wait until after the cold snap is over. It was sleeting today!!

Tina

Saturday, March 7, 2009 2:31 PM CST

Okay, I know that this is not a photo of Job, but I have to brag on Nicole for a moment. Nicole placed 3rd in the regional algebra competition at UCA this morning. She is the first person from Bigelow to place in any category. Nicole is only in 8th grade and was competing against 8th and 9th graders from much larger schools such as Conway and Greenbrier. She will compete in the state competition at the end of April.

WAY TO GO NICOLE!!!!

Also, in the photo album are some more photos of Nicole from the Glamour Magic shots that we just received. Hope you enjoy.

Job is doing great. We went to the eye doc last week and his vision is better than it has been in YEARS!! While wearing his new glasses, he tested 20/40 in his right eye and 20/25 in his left eye. These are distance glasses so they do not help for reading. However, we are going today to pick up his reading glasses.

We will be heading back to St. Louis during spring break for our 15 month evaluation. We are looking forward to seeing all our St. Louis friends again.

God Bless,
Tina

Wednesday, February 25, 2009 9:09 AM CST

Job's elementary school decided to put together a Student Council. The kids that were interested in participating were to write a letter to the Principle. Job was very excited. Nicole helped him write his letter, type it up, and print it on nice stationary. A few days later he was told that he was one of twenty kids that were selected to serve on Student Council. They were then told that they could run for the offices of president, vice-president, treasurer, secretary, and sergeant of arms. Job was all about running for president. The kids had about a week to campaign and were to give a 2-3 minute speech on Tuesday, the 24th (or that's what I was told). We helped Job print posters and business cards encouraging kids to vote for him. Job, Nicole, and I talked and discussed his "platform" and what he should talk about in his speech.

Job had his regular clinic visit on Monday so he did not attend school that day. We found out from some friends that the kids had done the speeches that day. Job was very disappointed when he found out he had missed the speeches and wondered if his chances to become Student Council President were squashed because of it. I encouraged him not to worry about it, because even if he didn't get elected president then he was still a member of Student Council.

They held the elections on Tuesday and JOB WON! His term as president does not begin until next year when he is in 6th grade. What does all this mean? Well, I am not exactly sure, but he is happy about it.

Tina

Tuesday, February 17, 2009 10:42 AM CST

Please see the message below and please stop and say a prayer for this girl who is fighting for her life in St. Louis.

written by Veronica Hollis
"Hey all, if you haven't already heard, my cousin Jemmalee Rector was in a near fatal car accident Saturday, the 14th while on her way to Senior night ballgames. She is a senior and a cheerleader; she is involved in FBLA, Sr. Beta, Student council, Pep Club, and much more. Jemmalee is in St. Louis University Hospital in the head trauma with her life basically hanging by a thread. She has suffered broken ankles, broken arms, broken pelvis, broken neck, spleen removed, liver badly bleeding and bruised, lungs and kidney bruised, all four lobes of her brain are bleeding and the doctors lost her once in Poplar Bluff and then once while in St. Louis, but were able to bring her back both times. She is already fighting very strongly, or she wouln't have survived this long. She pulled out in front of someone at the junction of M and 60; the truck hit her on the east bound lane (t-boned her car) and she wasn't wearing a seat belt. All of our family has been praying since it happened and I am just asking my friends to further that prayer chain if you would please. We don't really know any kind of prognosis for Jemmalee, but the family has been told that even if she does live and survive the wreck, she will not be the same Jemmalee. But, like I said, she has already proven to be a fighter and I would really appreciate if you could all add her to your prayers and get her on any church prayer lists if you can. thanks and love you guys!"

Tuesday, February 10, 2009 2:35 PM CST

I have added two videos to the www.jobs-miracle.com website. They are both from the Christmas play. One is Job's solo and the other of Nicole.

Job's Solo

Your Very Best Friend

Wednesday, February 4, 2009 5:24 PM CST

All is going well for us. Job is continuing to get stronger and stronger. We are headed to Ark Children's Hosp. tonight for a sleep study. Tomorrow morning he has an eye exam and evaluation at the Jones Eye Institute at UAMS. Hopefully they can help him with his vision. I am still praying that God will heal Job's eyes.

He said he stood for 40 seconds in PT today without holding on to anything, just freestanding. He is very encouraged by the progress that he is making.

Hope all is well with you and your family.

God Bless,
Tina

Wednesday, January 28, 2009 8:20 AM CST

Job and Nicole enjoyed their day out of school yesterday. They were frustrated today that Perryville and Conway were closed but Bigelow schools were open. The roads are clear though. We didn't get the ice here that they thought we would.

Job went to clinic on Monday and was able to stand on the scales for his weight and against the wall for his height. That is the first time in two years that he has be able to do that.

I can't help but praise God as I look around at this beautiful house. I still have to wonder if it is really our house from time to time.

God Bless you all. I hope you have a wonderful day.

Tina

Friday, January 23, 2009 11:23 AM CST

Hey all. Everything is going great for the McCully family. Job's CMV level has stayed down to around 1200 for several weeks now and so Dr. Saylors decided to stop the Foscarnet that he was receiving every Monday and only continue to give him the Cytogam (an IVIG specifically for CMV) every other week. This was GREAT NEWS to hear. Not only to we only have to go to clinic every other week, but Cytogam is not hard on his kidneys like Foscarnet. Hopefully all his electrolytes will balance back out and he can come off some of the supplements.

His blood sugars have been wonderful also. I have been weaning down his insulin because he is doing so great.

He walked 275 feet (with his Pt pulling his walker for him) while only resting about 5 times. THAT IS ALMOST THE LENGTH OF A FOOTBALL FIELD!! He was also excited to discover that he can stand alone while leaning up against a wall. He is really getting motivated by seeing progress. Finally he has been out of the hospital long enough to stay consistent with his exercise routine and see some great improvements.

School is going well too, we all staying caught up with his classes. The school has obtained a video camera and monitor for his use at school. He can point the video camera at whatever he wants to look at, whether it be a book or the blackboard, and zoom in to whatever size he needs and it will appear on the monitor. It is really working great. For the first time in years he is able to read a book on his own.

I updated the photos if you want to check them out.

Tina

Wednesday, January 7, 2009 9:06 PM CST

Job walked 50 feet today with his walker ALL BY HIMSELF!!! Up until today, when he would use his walker, one person would have to pull his walker along while another person followed along with a chair for him to sit in when he needed to rest. Last night he told me that during PT that day, he noticed that he was able to stand for just a second without his hands on his walker. I was so excited and told him that is all he needed to be able to do to push his walker himself. Just to be able to take his weight off his hands long enough to push it forward a bit. We decided to make a short term goal. I would reward him with a trip to the movies when he was able to walk 10 feet using his walker by himself.

So today during therapy, he asked Cindy to let him try to push the walker himself. He not only met our goal of 10 feet, but flew past it to 50 feet with only 5 resting periods. He was so excited when I picked him up from school today. We rush home and looked up all the theaters in our area to see if there was an early showing of "Tale of Despereaux". I found that Chenal 9 had a show at 4:10 p.m. I looked at the clock and it was 3:38. I yelled, "JUMP IN THE CAR!! WE CAN MAKE IT!!" We all ran to the car and zoomed to the theater. We pulled in the parking lot at 4:12. I bolted from my seat and grabbed the wheelchair, Gma snatched Job out of the backseat and threw him in the chair. Nicole scrambled for her birthday money to buy the tickets and popcorn (yes, I will pay her back LOL). We rushed the doors, grabbed our snacks, and made our way to screen 3. Strangely, when we walked in to the room, it was quiet and empty except for some elevator music playing softly.

The movie, that is suppose to be on a timer, had failed to begin at the proper time. It was probably about 4:30 by now. An employee, who got the movie going for us, was confused as to what happened to their timer. We all just smiled and thought to ourselves that God just blessed us by holding the movie until we were nestled snuggly in our comfy seats with popcorn and coke in hand. Praise God for the little things in life. And praise God for this great milestone in Job's rehab.

God Bless,
Tina

We have set our next goal of 100 feet without resting.

Monday, January 5, 2009 9:57 AM CST

In case you didn't know, more photos are located on Job's other website (www.caringbridge.org/visit/job

All is going fine with Job and the rest of the McCully family. We have just been busy with the holidays and visiting family over the past two weeks. Job is the healthiest he has been in a long, long time. Nicole is the puny one lately. She had her birthday yesterday and turned 14, but has been sick with tonsillitis and can barely swallow.

Nicole's basketball team did win a tournament that was held over the Christmas break in Perryville. It was called the Farmers and Merchants Bank Classic. Below is a photo. Also, Job's hunting photo made the front page of our local newspaper. You can check that out here. Once you get to the website, select "Perry County" from the list on the left hand side of the page.

Saturday, December 20, 2008 9:14 PM CST

Job went on a deer hunt today and shot his first deer. It was a doe only hunt so although they seen several buck, they had to wait for a mature doe to come around. We traveled to Ozark, AR last night and got a hotel near the location of the hunt. It is about a two hour drive from our house and we were going to meet our hunting party at 5:00 a.m. We thought it would be much better to drive up the night before. Job was so excited about the whole adventure that he could hardly go to sleep. We finally all got to sleep around midnight. I was worried about how Job would handle so little sleep, but he was up and adam at 4:30 with the rest of us.

We ate a feast of a breakfast at the lodge and the Rob and Job joined up with guide Jeremey and headed out to search for a proper doe. Nicole and I took the opportunity to sneak back to the hotel for a few more hours of sleep. All the hunters came back in for lunch. Several had already got a deer and were snapping pictures and getting the meat prepared for transport home.

Job was still buzzing and anxious at the opportunity to kill his firt deer. He kept wishing that he could have shot one of those three buck that he and his party had saw first thing this morning. They were beautiful. Two eight point and another younger buck were standing right beyond their stand. But this was a doe only hunt, so they had to wait. One doe ran right up to their blind, but soon ran off and did not give them a chance.

After spending a couple of hours touring the property, it was time for the afternoon hunt. Rob, Jeremey, and Job headed back out to their blind to try again. Nicole and I grabbed the monopoly game out of the car to help us pass the time. Every once and a while you could get a whiff of the smell of raw flesh from the deer they had cleaned this morning which made me a little sick at my stomach. I am not a hunter. I had never seen a deer cleaned before today. The smell wasn't strong though and for the most part you didn't notice it unless you walked to that area of the shop. A young boy who was playing monopoly with Nicole and I assured us that the smell was nothing compared to when a deer was not cleaned properly and areas were cut that should not be. He said that if that happened, it would run us out of the building.

The game warden alerted everyone that someone had just killed a deer. We anxiously awaited them to arrive hoping that it was Job, but it was not. It was a little boy with Cerebral Palsy. He was so happy and excited that he couldn't hardly sit still. I was thrilled for him, but so hoping that it had been Job. Another call came in and another deer arrived, but again it wasn't Job. We kept rolling the dice and buying property. A third truck pulled in and I saw a wheelchair in the back that was the color of Job's, but as the truck back in closer then I could see that it was someone else. There were only two kids left that had not killed a deer now.

I was winning the monopoly game by this time. I was trying to take it easy on the little boy who was playing with us, but Nicole was broke and scrambling for money. She was looking for something to mortgage when the Lt. Bonner told us that Job just shot a deer. Nicole and I abandoned our game and jumped in the truck to ride out to Rob and Job. We were able to get some pretty good photos. Job also got to keep the bullet that he killed it with.

I have added some to the photo album to share with you all. Job is so thrilled you cannot even imagine. This was probably the best Christmas gift he could have received.

I hope you all the best this Christmas Season.

Tina

Saturday, December 13, 2008 11:46 AM CST

Well, we made it through our first year. I couldn't help but re-live Dec. 11, 2007 all day long. It was both a wonderful and tormenting day. I am so glad that Job's evaluation went well. We are able to decrease his Prednisone from 10 mg to 7.5 mg and any decrease in Prednisone is gloriously celebrated. We are increasing his Tacro (Prograf) a tiny bit from .15 to .18 to help protect his lungs from his own immune system a little more.

The Dr.Faro wants Job to see an endocrinologist because his bone density scan showed that he is faily osteopenic, meaning he has thinning of his bones. They want to consider putting him on a new drug called Pamidronate.

Please everyone say a prayer for Job's friend Tim Metcalf. He is going in for surgery on Monday. He is facing a serious illness and we need to join together to fight and pray that it turns out to be simple.

God Bless,
Tina

Tuesday, December 9, 2008 6:28 PM CST

NO REJECTION

Yipee! Praise God for no signs of rejection. Dr. Faro asked us this morning after the bronch if we could stay in St. Louis until we received the CMV and fungus cultures which would not be completed until late Wednesday. We of course agreed. HOWEVER, when our coordinator (Laura) called this evening to tell us about the NO REJECTION, then she also told us that Dr. Faro felt comfortable enough with what the test results were showing so far to let us go home.

His tests do show an infection and Dr. Faro will communicate with Dr. Saylors on how to proceed with treatment, but we can do that in Little Rock.

Thank you all for all your prayers. We will be heading back to Bigelow in the morning.

Tina

Tuesday, December 9, 2008 10:04 AM CST

Bronch went great. So far so good on the evaluation. I will post results as soon as I get them.

Tammy's boys are sick so our plans to visit them in Michigan are canceled. We will be heading home as soon as they release us from St. Louis which will probably be late Wednesday.

Tina

Sunday, December 7, 2008 9:20 AM CST

We are in St. Louis. We drove in yesterday and had a smooth trip. We are staying at the RMH but I am wishing that I'd just got a hotel this time. There were no rooms available at the Park Ave. RMH so we are on West Pine. It is a great facility and serves a wonderful purpose, but the rooms are tiny and the bathrooms are community style. Job thinks we are sleeping in a closet HA. With one full size bed crossways reaching from one wall to the other at the end of the room, we were able to fit the roll-away lenthwise leave just enough room to walk to the door. HA. Oh well, its just part of the adventure.

We are headed to West County Assembly of God this morning for a visit with our friends there. They are having their children's Christmas program this morning and Job really wanted to see that.

Monday and Tuesday are evaluation days and I pray that all goes well. I am nervous as a cat about it all, and will be glad when it is over and we are headed out of here. After that is done, we are going to Michigan for a couple of days to visit Tammy. Then back home to Bigelow. I wish Nicole and Rob could have made the trip with us, but they have school and work.

God Bless,
Tina

Tuesday, December 2, 2008 10:01 PM CST

JOB IS HOME!!

Job was discharged from the hospital today. He is home safe and sound. THANKS FOR ALL YOUR PRAYERS!

God Bless,
Tina

Monday, December 1, 2008 10:23 AM CST

Okay, it has been a little of a roller-coaster ride for the past 24 hours. Yesterday afternoon it looked as if Job would be getting out of the hospital today or tomorrow, but after they took and x-ray and looked at it things seem to have changed. He needed 1 liter of oxygen last night while he slept. That is not much and really doesn't even indicate a worsening of his situation because he probably needed that all along.

His x-ray looked the same... which is better than it being worse, but disappointing when you consider that he has been on IV antibiotics for a week yet there is no improvement.

The only thing growing in his cultures is strep. That is one of the most common reasons for pneumonia says the docs.

Job has his one-year evaluation in St. Louis next Monday and Tuesday. I'm starting to get concerned about getting his discharged in time to make it.

Tina

Saturday, November 29, 2008 0:06 AM CST

All is going well. Job is doing great and I'm sure that he will be getting out of the hospital soon. It will probably be Monday or Tuesday before he can get out since we are in a holiday weekend.

Even though Job was in the hospital on Thanksgiving, we didn't have anything to be sad about considering where we were last year. Job was at death's door last year and we were 450 miles from home. This year is totally different. We have lots and lots to be thankful for.

Tina

Tuesday, November 25, 2008 10:10 PM CST

The bronch went great. No problems at all and they were able to obtain some good samples. He was off oxygen about an hour after the procedure and has been up in his chair playing on his computer every since. He is hardly coughing at all right now. Right after his procedure he was coughing getting that fluid out of his chest, but for the past several hours I have only heard him cough a time or two.

The bronch was delayed until after 3:00. That is why I didn't post an update until now. The O.R. must have been busy today.

I hope you all are getting ready for a big Thanksgiving with your families. I pray you all have a wonderful feast.

God bless,
Tina

Monday, November 24, 2008 9:37 PM CST

The bronch is scheduled for around 10 tomorrow. Keep in mind that we may not know anything more until Wednesday because the cultures will take at least 24 hours to grow.

Thanks for all your continued prayers. He is at Ark. Children's Hospital, room 8E (Orange).

Tina

Monday, November 24, 2008 11:06 AM CST

Job has pneumonia and is being admitted to the hospital today. They are going to do a bronch as soon as possible to identify what is happening inside of those new lungs. His x-ray was very cloudy even more so than they expected compared to his symptoms.

I don't know his room number or anything like that yet, but will pass that information on as I find out more. His Grandmother is with him. She had taken him to the hospital for his regular Monday clinic visit.

Please say a prayer for him.

Tina

Wednesday, November 19, 2008 9:54 AM CST

I guess you cannot watch the EMHE episode on the internet any longer. I thought they would let you choose the episode that you wanted to watch from this season, but it looks like they only leave the last two or three in the list.

Job is at school today. His second day since missing a week and a half due to his eye infection. He is so frustrated about being in that wheelchair and missing so much stuff at school. He wants to be active like he used to be. He gets depressed about not being able to play and participate like before. He told me the other day that he cannot even remember walking. Please pray that we can help him stay consistant with his exercise program (some tough love needed) so that he can get out of that chair.

I think we are all a little frustrated that he is coming up on his one year evaluation and still confined to a wheelchair. I feel especially responsible. I sure could have done a better job at staying on him about his exercises.

On another note, God is opening some doors for our speaking engagments. We will be at Bald Knob Baptist Church this Sunday night (service starts at 5:30) sharing what God has done. I have a few other leads going too, one as far as West Virginia. Who knows what God has planned for us.

Thanks for all the cards and gifts that you have sent to our family. We have all enjoyed getting the surprises. I have a scrapbook with all the cards and letters. Sorry I have not responded to everyone personally, I wish I was better at that. Its on my to-do list HA.

God Bless,
Tina

Thursday, November 13, 2008 12:21 AM CST

Job is getting out of the hospital today!!! His eye is so much better. It was indeed a staph infection, but it was NOT the ever feared MRSA staph.

I have been bainstorming about what kind of work I can do and still be flexable with Job and his needs. We need more income to meet our family budget demands. I am considering substitute teaching and would really like to get some speaking engagements lined up at churches or other organizations for a love offering or something. That is really where my heart is. I have talked with my pastor about how to pursue this idea more actively too. We have had a few invitations already and it has gone great, but I really think God will open up even more doors in this area.

So maybe some of you who read this blog might want Job and I coming to speak and testify at your church or other organization. Let us know. I would love to do that as my job especially since I am unable to go back to corporate america at the moment. Shoot me an email if you are want to talk about it (tinamc658@yahoo.com).

Thank you for praying for my family.

God Bless,
Tina

Wednesday, November 12, 2008 2:06 PM CST

Job's eye is doing so much better. They plan to discharge him tomorrow. They talked about discharge today, but then wanted to give him one more day of IV antibiotics.

Thanks for all your prayers.

Tina

Tuesday, November 11, 2008 1:09 PM CST

Job was admitted to the hospital yesterday due to an eye infection. I expect it to be a short hospital stay... a week or less.

We had a wonderful time this weekend at the Artisan Theater (www.artisanct.com) in Hurst, Texas. It was a great play on The Book of Job. The mayor of the city met us there and gave Job a key to the city. It was very nice.

Check out the updated photos.

Tina

Thursday, November 6, 2008 10:51 AM CST

Job's kidney function is normal and his CMV level is down to 3,000!!! The doctor said that a CMV level of 3k is considered normal, and many people walk around with that level all the time.

Praise the Lord for such wonderful progress.

Tina

Tuesday, November 4, 2008 8:44 AM CST

Good morning everyone. Job's clinic visit went well yesterday. His kidneys were healthy enough for him to receive his weekly dose of Foscarnet. He will only be going to the clinic once a week for a while to take some pressure off his kidneys. I just ask the Lord to heal Job of CMV, in Jesus name I plead.

I have a scripture that just keeps coming to my mind. In June when we were in St. Louis for our 6 month evaluation and only suppose to be there a few days, I received a call from Dr. Faro saying that Job had CMV and was being admitted to the hospital for treatment. You have to keep in mind that Job didn't have any symptoms. He was doing great, looking great, and feeling great. We were all a basket case of emotions knowing the seriousness of the diagnosis. While driving to the hospital, the following scripture jump to my mind and burned on my heart and I have held onto it ever since...

Phil 1:18-19 (NIV)
"...Yes, and I will continue to rejoice for I know that through your prayers and the help given by the Spirit of Jesus Christ, what has happened to me will turn out for my deliverance."

In light of this scripture, I am excited to see how God has used the EMHE show to inspire more people to pray for Job. It will be through the prayers of the people that Job will get his deliverance.

I ask the Lord to strengthen and encourage you today.
Tina

Monday, November 3, 2008 11:30 AM CST

Brandon Polito passed away Saturday. Please pray for his family. http://www.caringbridge.org/visit/brandonpolito

Friday, October 31, 2008 4:55 PM CDT

Job's ultrasound of his kidneys came back NORMAL. Praise the Lord! His labs are still out of whack, but improving. We are going to wait on his lab results Monday morning before giving him a dose of Foscarnet. If his kidneys haven't improved enough for Dr. Saylors then we will skip the Foscarnet for the day.

Job had a good day at school today even though he says he hates Fridays because he has PT and OT back to back. His legs are getting stronger and stronger. He is riding his tricycle more and more.

We finally got that stinking form for the handicap tag for our car today. I wasn't too worried about it before, but soon he will be walking with his walker or riding his tricycle everywhere and he will not be able to go long distances until he gets stronger.

We got a package from the Artisan Center Theater (www.artisanct.com) in Hurst, Texas about a production that is going on right now called "The Book of Job". I thought that was cool. Hope we can go see the play.

Tina

Thursday, October 30, 2008 5:03 PM CDT

WHEW, that was a close one. We were almost admitted to the hospital today due to Job's kidney function. The Foscarnet has put quite a strain on them and they are struggling. We made some changes to his meds and are dropping the Foscarnet down to only one dose per week. I am also going to send labs to the hospital everyday for a while so that we can keep a close eye on things.

He had an ultrasound of his kidneys today too. I haven't heard the results of that yet, but if they find something concerning then we may be back in the hospital tomorrow anyway.

The CMV is staying under control. It is still hanging around by not causing any problems and is being kept at a saft level right now.

Tina

Wednesday, October 29, 2008 8:35 AM CDT

We are all loving all the wonderful emails and postings (on both websites). Thank you all for your prayers and love for my family.

I would like to clear up a few misunderstandings that have evolved.

- On the day of reveal, we were told that the University of Central Arkansas had given the kids full scholarships. We do not have anything in writing regarding this gift and they cut it out of the show for some reason. I hope that we can get a letter of promise or something soon before this is lost forever.

- We did not receive any type of automobile. I know that sometimes people do receive big gifts like that, but we didn't.

- Our mortgage was not paid. We did not receive any type of monetary gift. I understand that some families receive money to pay taxes as such and have their mortgage paid off, but that did not happen in our case. The builder (Woodhaven Homes) did open an account at some local banks to try and raise money for us. There is a link on their website for donations if you are interested. I am not trying to beg for money, but I have had several people ask about this.

I hope this clears up a few misunderstanding.

Tina

Monday, October 27, 2008 10:03 PM CDT

In case you missed the show, you can watch it online at the EMHE website http://abc.go.com/primetime/xtremehome/index

Thanks for all the wonderful posts. Maybe God will open doors for us to share our testimony in person with more and more churches. We have been able to go to a few locally and it has been wonderful. I love to praise God for all that He has done for us.

God Bless,
Tina

Sunday, October 26, 2008 11:57 PM CDT

WOW, We sure had a wonderful time watching the show together with our community tonight. We are so blessed by all of your wonderful comments and words of encouragement. All I can say is praise God for all of this and all of you.

Tina

Friday, October 24, 2008 12:01 AM CDT

UPDATE: for anyone who has seen the Chubby Cuppy Cake video on YouTube or anywhere else on the net, it is not Job. I can see how folks are making the mistake, especially since they both have the same "prednisone" features. Sorry, its not Job however. I don't know who he is.

HEY EVERYONE, check out these five EMHE video clips http://www.movieweb.com/videos/ If they are not on the first page, search for videos added on 10/24/08.

Also check out this article that mentions Job http://www.gamezone.com/news/10_24_08_08_25AM.htm

HERE'S ANOTHER ARTICLE: www.tvguide.com/Celebrity-Blogs/Extreme-Makeover-Home-34709.aspx

TV Promo Correction: For those who have caught the promo for the show, I just want to let you know that Job has not been away from home for SIX YEARS. He wouldn't even know what home was if he hadn't been home since he was four. He was unable to come home for a year and a half. Hopefully the show will not make the same mistake as the preview.

Job made it to school today for the first time in a week. He didn't want to get up this morning but who does HA. He had a good day yesterday during his treatment. He made it all day without getting sick. His CMV level is down to 4,400.

Just a few more days until the show airs. We have a behind-the-scenes video put together by Woodhaven Homes that we are going to show during the watch party. Here are the details again:

WATCH PARTY
Bigelow Assembly of God
Oct. 26th 5:30 pm
refreshments and fireworks (bring lawn chairs for the fireworks)

For those who cannot come to the party, be sure and watch the show on ABC at 8/7 central.

Tina

Wednesday, October 22, 2008 8:24 AM CDT

Job and I are headed to the hospital today for an MRI and an appointment with the ophthalmologist (sp?). This is all to try and figure why his vision is so poor and why glasses do not help. I pray that God heals his vision.

Deut. 34:7
"Moses was a hundred and twenty years old when he died, yet his eyes were not weak nor his strength gone."

Col 1:18 "Christ has supremacy in all things"

Dear Lord,
The only way possible for Moses' eyes to not be weak and for him to retain his strength is through your uncomparable, great power. The same power that raised Christ from the dead. The same power that saved Job from the grips of death. You have supremacy over all things even our eyes, blood sugar, and muscles. I ask you and stand on these scriptures that You restore Job's vision, his blood sugar balance, and his strength. In Jesus name I pray. AMEN

Tina

Monday, October 20, 2008 11:52 AM CDT

EMHE WATCH PARTY
Bigelow Assembly of God
5:30 pm
Refreshments will be served
Fireworks after the show (so bring your lawn chairs)

***** EVERYONE IS INVITED *****

Job's CMV level was down to 4,500 (from 9,000 last week). PRAISE GOD. It will be negative SOON!!!

God Bless,
Tina

Saturday, October 18, 2008 10:30 PM CDT

Yes, Aunt Tammy, Job's last CMV level was 9,000 which is the lowest it has been since July. We are praising God for the progress but we are not satisfied. We are still praying that it will be NEGATIVE!!!

We are all getting excited to watch the show and see how they edited it.

OH YEAH, JOB WALKED 102 feet on Thursday!!! He was using his walker and still needed is unable to scoot the walker himself, but we are very excited about the progress. He is so READY to get out of that wheelchair.

Job is still trying to attend school, but it is tough with all his doctor's appointments. He will only get to go on Tuesday and Friday for the next two weeks. Which also means he only gets two days of physical therapy also.

God Bless,
Tina

Friday, October 17, 2008 9:25 AM CDT

Tina sent me a text yesterday saying that Job's CMV is 9,000!! That's the lowest it's been in a LONG time! I've just given Mom and call to confirm, because it just seems really really low, and she said that 9,000 was right so yay!! They're at clinic now just for routine stuff.

Anyway, gotta get back to work but wanted to let you all know the good news.

Aunt Tammy

Monday, October 13, 2008 11:00 PM CDT

Hey all!! Everything is going fine here. Job is still going to the hospital twice per week to fight this CMV, but he is stable. He is working hard in school and trying to keep up, but it is tough when he has to miss so much.

I will post more later on, but wanted to just send you all a quick note.

Don't forget to watch Extremem Makeover: Home Edition on Oct. 26th!!

God Bless,
Tina

Tuesday, October 7, 2008 10:20 AM CDT

Well, I saw that there hadn't been an update in a bit so thought I'd just jump in myself.

I talked to Mom last night while she was waiting with Job at the hospital to get his scheduled dose of Foscarnet. She said that he was doing just fine other than a bit of vomiting and disorientation that was caused by one of his other medications. It makes for a long day for them but it seems to have gone okay.

Job's getting stronger every day and is continuing to make strides towards getting out of his wheelchair. Not only was he not using his legs for a year, but the steroids added so much weight during that time that he's having to work twice as hard to get his legs strong enough to carry him.

I can't wait until the show airs. Even though I was there through it all (and even slept in Job's room the last two nights which was very cool), there were so many things that I didn't get to see. I can only hope and pray that if I show up on tv, that I don't look as horrible as I am almost positive I will (it was hot and I always felt like I was melting!).

Well hopefully someone will fix their internet soon so that you all can get better updates than this, ha.

Aunt Tammy

Tuesday, September 23, 2008 8:42 PM CDT

NO REJECTION!!!! We are going home!!

So the biopsy showed no signs of rejection so Job was discharged and we are free to head home. They did find evidence of an infection, but not really surprising because of the CMV that he continues to fight. They are running further studies but expect it to be CMV.

We are tickled to get to head home tomorrow. Praise God.

Thanks for all your prayers.

***Remember the show airs on Oct. 26th.***

Tina

Monday, September 22, 2008 9:47 PM CDT

We arrived in St. Louis last night and so far all is going fine. Job hit 89 percent on his PFTs (FEV1). That is the best he has EVER done since he has been doing PFTs.

Job was admitted to the hospital for one night only so he could receive his Monday dose of Foscarnet and Citogam. In the morning he will have his bronch and biopsy. Once the biopsy results come back great then we are good to go home. Job wants to go to the zoo before we go home. It is all he can talk about. He has his heart set on some fountain/waterfall thing that he plans to go under and get wet. He was pretty sick the last time we went to the zoo and I guess he wishes that he had been able to enjoy that more than he was able to.

He walked 70 feet for Carol today. She was thrilled. He was able to stand by himself from a sitting position up to his walker and then walk while I pulled his walker in front of him. He took two or three breaks in his 70 foot trek. It was fantastic to see. PRAISE GOD!

God Bless,
Tina

Wednesday, September 17, 2008 10:38 AM CDT

Job walked 28 feet using his walker on Friday. He was very excited about it. I hate that I missed it.

We continue to fight CMV. His levels for the past several Mondays have been:

August 25th - 54,000
Sept. 2nd - 21,600
Sept. 8th - 27,600
Sept. 15th - 28,600

Since his levels seem to be inching up a little, Dr. Saylors wants to do Foscarnet twice a week for a little while. We are going in tomorrow for another dose. Then next week we will be in St. Louis for our 9 month evaluation. He will get a dose on Tuesday after his bronch and then again at ACH on Friday after we get back home. I guess then another dose on Monday (the 29th) and maybe we can drop back to once per week (I hope).

God Bless,
Tina

Friday, September 12, 2008 9:45 AM CDT

Job had a good day at school yesterday. As he got in the car, he proceeded to tell me all about physical therapy and how he is doing. He practiced walking in place and bridges and chair sit-ups. Today the plan is to walk ten feet with his walker. He said, "Mom, I am making progress!"

I have a story to share with you about how the Lord used a broken down washing machine to bring about a miracle. Now remember, this is just one angle of a story that has many angles. God came from all directions, but here are the details of one direction…

About two years ago our washing machine went out. It was Oct. or Nov. of 2006. The unit was only about four or five years old so it was frustrating that it had stopped working so soon. With a family of five, you can only go so long without a washing machine. We visited the laundry mat a time or two before we realized it would be cheaper to just buy another washing machine than to keep that habit. While I was at work, Rob went alone to shop for a washing machine. Okay, how many women out there want their husbands to shop alone for their washing machine? Yes, that was exactly my thought as well. Fearing that I would soon be cranking the water out of my clothes to save electricity, I told Rob to PLEASE pick out a good machine that had at least a few features.

Taking my request in consideration and his own desire to have a dependable washer that would last us years to come, he purchased a top-of-the-line, newly released top-load washing machine for $600. That was about twice the price for most top loading washers at the time. It was beautiful. It had every control and feature a clothes-washing mama could ask for. We were both happy with our selection. He even paid the $50 extra to have it delivered and professionally installed to ensure all of that would be taken care of.

The washer lasted only a few weeks before it broke down the first time. I called to have it repaired (tried to have it replaced but that didn't go anywhere). Joe Cole, a local boy who had gone to school with Rob, came out to make the repair. Since the machine was so new on the market, Joe had not had training on this washer and was not aware of any common problems that this particular brand and model was known for. It had no reputation because it was too new. He identified a problem and ordered a part. We waited for the part and then he repaired the washer. A few weeks later it broke down again… This was December of 2006.

Joe would get the washer running for a few weeks or a month and it would break down again. I spent hours on the phone with the manufacturer trying to get them to declare it a lemon and send me a new but I had no success. In February of 2007 Job went into respiratory failure and was placed on a ventilator and we left our home immediately to stay at the RMH and hospital to be close to him. It was August of 2007 before Rob and Nicole returned home because Nicole needed to go to school. The washer broke down again and Joe came out and patched it. In Oct. Job went into cardiac arrest and needed CPR for ten minutes, Rob and Nicole left the house to be with us in St. Louis for a few months. Job had his transplant in December and things were finally turning around for us with Job's health. Nicole and I came home in January to find that the stinking washing machine still didn't work. I was very frustrated! If you have been adding this up, which is the reason I included all this back and forth business, you will see that although we have owned the washing machine for almost a year and a half now, we have hardly even been home to use it. Actually it only had a few months of use.

Now Joe is a great guy and a very good technician. Our laundry room was located in the very back portion of our home. He had to walk through our entire house to get to the washing machine. Joe was so frustrated that he was unable to fix our machine. He was stumped at why it was giving us all so much grief. Feeling like he was letting us down and worried about us thinking that he didn't have a clue, he continued to think and think and try to solve the problem. He was able to see our home intimately and many times in a way that others, even our closest friends could not. The condition of our home weighed on his heart.

In December of 2007, while we are still in St. Louis, God woke Joe up at 3:00 in the morning. He punched his wife and told her, "We have to help the McCully's get a home!" She asked him how and he said he didn't know. He just knew that it was what he needed to do. He got up and thought and thought, watched some TV and wondered how he could help. A day or two later he told his daughter to get on the internet and download the instructions and application for Extreme Makeover: Home Edition…

Praise God for a brand-new, washing machine that would not run. What the enemy means for evil, the Lord turns to good. Be careful about complaining against your uncomfortable circumstances, they may just be working out for a miracle.

God Bless,
Tina

Thursday, September 11, 2008 8:09 AM CDT

Job is home!!! He was discharged from the hospital yesterday and is back at school today. He is feeling great and is sure glad to be out of that hospital cage.

God Bless,
Tina

Tuesday, September 9, 2008 9:05 AM CDT

Well, I am sorry to say that we are still in the hospital. His eye is recovering well, but is still not completely healed. This afternoon we are going to the eye clinic for Dr. Philips to take a good look at things and see what he thinks.

Job is feeling great however and is ready to get out of this joint. He is doing fine on the once-per-week dose of Foscarnet and biweekly dose of Citogam. On August 25, the CMV was 54,000 before his treatment (called a CMV trough). On Sept. 22nd the CMV trough was 23,000. We sent a CMV trough yesterday but haven't got the results yet.

I am sitting here beside Job at the hospital this morning. He is still sleeping.

Dear Lord please restore Job's health completely. Deliver him from diabedies, CMV, and the wheelchair. Heal his vision and kidneys and any other organs that are struggling. In Jesus name I ask. AMEN

Tina

Saturday, September 6, 2008 10:23 PM CDT

Job was admitted to the hospital yesterday. He's in room 41 on Gold. All is going well so far. The plan is for him to be discharged on Monday evening.

Tina

Friday, September 5, 2008 10:07 AM CDT

***New Photos Added***

Hey all!!! I wanted to share a poem with you that Sara Bradley wrote. Jack Wilson of Woodhaven Homes wanted it read during the press conference but for whatever reason it didn't happen.

This is the House that Job Built

This is the house that Job built
Though his body could hardly stand
so many he's touched around him....
He inspired to lend a hand

Job's Faith poured the foundation
And his Hope just to survive.....
Nailed each nail, painted each wall
Keeping all he knows alive

This is the house that Job built
With all the love he's shown
Stacked the stones one by one
Like no other child we've known

This is the house that Job built
One we'll never forget
Holding blessings and prayers for god's healing hand...
The strongest house built yet.

School is going good. Job is enjoying everything except getting up early every morning, HA! He has some infection in his eye though. We went to the ER over Labor day weekend and got on some antibiotics, but I think maybe he needs some Vanc. We are going to take him in to see Dr. Saylors this afternoon. He may admit him to the hospital for the weekend.

We are getting settled in to our new home. Still have tons of unpacking to do. Every morning while I am drinking my coffee, I just sit in awe about how beautiful the house is. God truely blessed us in a wonderful way.

I am glad I can finally talk about things (to a certain extent anyway). Sorry, I can't post descriptions or anything until after the show airs on Oct. 26th. However, for months while we were getting calls and interviews and the buzz was going on that we might get selected, I was sworn to silence. It was driving me crazy that I couldn't tell you all what was happening. Especially after so many of you have prayed for us and sent letters into the show on our behalf. We did get to keep one bag of letters by the way. I will forever treasure them. They said they received thousands and thousands of letters and post cards. There were so many letters and post cards that they stopped up the ABC mailroom.

May God bless you all who took the time to write a letter or postcard on our behalf, say a prayer, volunteer, or donate time and/or supplies. I know that God will reward you for your acts of kindness.

Tina

Saturday, August 30, 2008 11:15 PM CDT

Hi all! Everything is going really well here. Job started to school this past Tuesday. His first time to school since Feb. of 2007 (a year and a half). It is going good. His tricycle and walker both came in also so we are looking forward to getting those things started. He is getting PT and OT during school which makes things much simplier.

We love the new house. We have been working and working trying to get our rental house provided to us by the Johnson Brothers cleared out and cleaned up so they can use it for someone else. We finished up tonight so maybe we can relax for a minute.

We are really blessed to have this new home and all the things that come with it. God really provided for us over and above. He gave us a house we didn't build and crops we didn't sow (the cabinets were full of groceries).

Job continues to fight CMV. We have quit using Cidofovir because it was not showing any results. His CMV level reached 870,000 on Friday the 8th, that was the day admitted him to the hospital for five days of Foscarnet. On Wednesday the 13th, the day of discharge, his CMV was down to 11,000. This past Monday, after a week and a half of no treatments, his CMV was up to 54,000. The plan is to give him a large dose of Foscarnet once a week on Mondays and see if we can manage it like that.

We will be headed up to St. Louis again in a couple of weeks for Job's 9 month evaluation.

I know, I know that I need to update the photos. I promise I will do that ASAP.

Don't forget that you can see photos of our house at www.thehousejackbuilt.com/extreme/. You'll have to watch the show on Oct. 26th to see the inside of the house and hear about our wonderful vacation.

Tina

Friday, August 29, 2008 11:57 PM CDT

Well...I know that they had the internet folks out at the house but there's some confusion with the router so they are still out of touch. There's not a lot of updating to tell at this point but I wanted to let everyone know that everything is going okay. Now, I will say that I haven't talked to Mom or Tina today because there were some interesting activities going on up here but I talked to them last night and everything was just fine then. They are loving their new home and are anxious to get all the final pieces in place (internet and cable are huge components of feeling at home to those of us with electronic addictions, ha).

I've watched a few old episodes of EMHE and I have to say that I am just thrilled with the house that Woodhaven Homes built and the beautiful work that the EMHE designers did in the house. I still can't share any details, but I have yet to see something on an old episode that I like better than what they've done in Tina's new home. I know that this new home doesn't solve all of their financial problems. They still have medical bills and other expenses but this new home helps them so much that it goes beyond material goods. It provides a sense of relief that they're in a safe place. I've gotten a HUGE sense of relief myself because I've been worrying about their home for so long that I keep having to remind myself that they are safe now.

I just want to thank everyone again for all their hard work. Justin and I are living in daily fear that we will actually show up on the episode in October. At the time we were filming, it seemed like a really fun idea to be on camera but then we got home, reality settled in and we remembered how hot and sweaty we were and now we're scared, LOL.

Well, maybe they can get connected soon and you can have some real news instead of my rambling, ha.

Aunt Tammy

Sunday, August 24, 2008 3:49 PM CDT

Well Justin and I are on our way home now. We had a great weekend visiting and helping everyone hunt for the hidden prizes around the house and exploring all the other excitement in and around the house. Still can't share any details until the show airs which is, by the way, sometime around the end of October and is scheduled to be the fifth episode aired this season. I can tell you that I slept the two nights in Job's room. Job started off in there with me and then wanted to go sleep with Grandma because he LUUUUVVVVVVSSSSSS Grandma :). He did tell me something nice though. He said, "Aunt Tammy, it seems weird that you're my aunt. You seem so much closer to me than that." That was really sweet. Nicole had a great time playing games with Justin and, unfortunately for him, beat him often.

It was just so great to finally get my family back and get some quiet time with them amidst all the hubbub. Job seemed to be feeling okay relatively speaking. I think the excitement was pretty overwhelming and affected his (and everyone's) mood in really weird ways. We hung out all day Friday at the Bigelow City Hall waiting for everyone to finish their interviews. After getting all of those amazing things in the house, I went out and got him a 50 cent dart gun and a Frisbee for Nicole and we had a lot of fun with the dart gun shooting everyone in the room. I'm fairly experienced in taking blood sugars and giving Job his shots in his stomach now. He had to educate me but I'm a quick study.

Oh!!! and to the people at Arbonne (I can talk about this part because it wasn't part of the ABC production piece...) THANK YOU! Mom shared some of her "booty" with me and I'm just tickled pink. It was soooooo exciting going through all the stuff and the thought that went into it was very sweet. There was a lot of thought that went into every thing in the house and it was overwhelming.

I believe that Tina will be all connected back to the internet sometime tomorrow and will take over the update postings from now on.

Thanks again!!

Aunt Tammy OUT :)

Friday, August 22, 2008 5:49 PM CDT

THANKS EVERYONE FOR BUILDING US AN EXTREME HOME!!!! FROM JOB (He dictated this word for word, right down to the From Job and this was completely without prompting. He just popped up and told me that I needed to write this in the post I was working on)

Well, I'm sitting here with Job waiting for everyone else to get finished with their interviews so we can go to the house and get to relax for the first time. I was so excited when we got to see them last night and Job hugged me for so long that I thought he had dozed off. Then I grabbed Nicole and gave her some big hugs. Job wanted me to spend the night with them there at the hotel and I would have but they really needed their rest to get through this long day of interviews so we went back to the rental house where the a/c doesn't work.

We're glad we get to sleep in the new house tonight. Justin and I are going to get some of those sleeping bags from Camp McCully and camp out in the air conditioned (and PLEASE! mosquito-free) house. I can't wait to see it in its final stages because it wasn't complete when I saw it early Thursday morning. It'll also be good for them to be able to wander through the house with a bit more time to look at everything and explore.

We're getting a little bit punchy in here waiting to get to go to the house. After we took Job's blood sugar and gave him his insulin, Job even took my blood sugar (which was low because I ate a peanut sugar patty thing and my hypoglycemia overreacted to the flood of sugar). I had to come over early this morning so Tina could take Job's blood and I could shuttle it over to Children's Hospital so I've been with them all day.

Nicole just came back and it looks like Mom is here now too but I think they've kidnapped Tina. They've had her for about four hours. Job's been feeling really good (all things considered) and has been in a good mood but he just yelled, "I've been concealed away from my own room!"

We're off to hunt for Tina and get Job in his room!

Aunt Tammy

Thursday, August 21, 2008 8:01 PM CDT

I don't know where to start!! I was there last night until 3 or so this morning. Went home, fell into bed by around 4, got up this morning and went out for the reveal. I'm exhausted, sleep deprived, skeeter bit, sunburned, and my legs and feet are in serious pain from all the standing but I'm thrilled. Just to see their faces when they saw the house was the most amazing experience! When Mom broke away from her assigned post and hugged me, it was like the whole world just fell away. I didn't even notice until I pulled back a little that there was a camera practically in my ear :).

Justin and I have gotten permission to see them at their secret location, so we're on our way there now and I'm just giddy with excitement. I've had just a wonderful experience and the fantastic people I met made sure that I got to see everything. I can't count how many strangers would say, "They're family! Please let them get through." It was just so unexpected since in a lot of cases, I had no idea how they knew who we were. Also, I want to thank Robin for the beautiful gift. The note touched me very much and was just so thoughtful.

I don't know if I can tell anything about the inside of the house but I think I can't yet since I wouldn't even have known what was in the house if I hadn't been working in it last night. Just to be safe, I'll let ABC share the details of everything in their own time but I can say that when they saw the outside, they were so excited that I thought Rob was going to fall over backwards. Tina and Mom were crying, Nicole was grinning from ear to ear and Job's mouth was just hanging open. Once Ty took them in the house, we didn't get to see them again because the inside shoot was about 3 hours long. I've said it before and I'll say it again...this Hollywood extra gig is tougher than I ever thought and not something I would do again lightly.

They're almost here and I get to get my hugs and squeezes in so I'm going to close this down and will let everyone know as many details as I'm allowed as soon as I can. I can at least post an update on Job's health sometime tomorrow.

Aunt Tammy
p.s. If I NEVER use another port-a-potty, it will be too soon! I'm sooooooooo over them!!!

Wednesday, August 20, 2008 12:20 AM CDT

What a rainy night!! The Army was kind enough to drop of several duffle bags of rain ponchos which helped tremendously. They didn't have the drying treatment so they weren't perfect, but they were extremely appreciated. They wound up sending everyone home early last night because they were mostly just doing work inside the house and there were only about 10% of the people buzzing around in there vs. the million in there last night. Christi (my cousin) and her friend Debbie and I were the last to leave because we were having such a good time talking to my friends in security and watching a behind the scenes show in the VIP tent of a build in Myrtle Beach. From my understanding, they are locking the house down today and only a few people can go in from now on because the designers are taking over from the builders and they want everything to be a surprise. We got to walk through it last night and have some features pointed out to us but I won't share any of those details since that would take away from the surprise. I can say that it is beautiful inside and they've done an amazing job. I have to admit that I wondered about the quality of these homes that are built in 106 hours and while I don't know about the rest of the builders around the country, Jack is extremely consciencious about high quality and his standards are so high that I have no worries whatsoever now.

I'm getting ready to go back out there. Not sure what I can do but if nothing else, I can at least be a part of this in the background.

I want to thank everyone again for all the time you're putting into this for my family. I've seen people there who seem to never leave. I've met a volunteer named Gale who has spent almost every hour out there since the beginning. While I'm sitting around waiting for something to do, I watch all the people buzzing around the house and realize that each and every one of these people is a volunteer who may very well have either come straight from work or will get a quick shower and go to work immediately after leaving the site and it's just overwhelming.

It's really hard to be here and not get to see them but it's going to be worth it when they see this home that is bursting with the love that has gone into it. If you think about it, a lot of build sites have quite a bit of negativity around them. Contractors arguing and pointing the fingers at the other contractors. Future homeowners complaining about something that wasn't done just like they like it. Weather slowdowns causing huge delays and stress for everyone. This site just feels so positive. Everyone is working together. The most excitement you can get out of a volunteer is to tell them that you need something done whether it's hauling wood scraps or cleaning up the catering tent (they are feeding us WAY too good). The rain slowed nothing down (they even had freshly poured concrete, but they just covered it with plastic sheeting) and everyone is just filled with love and the knowledge that they are changing a family's life. God's hand is very visible when this many people can come together in such a selfless way to do something for someone else.

I had said at first that it was strange for me because not a lot of people knew who I was and I felt a bit like a fish out of water. Well, when I walked up last night to the site, I heard, "There's our girl!!!" It was Lt. Jim from Extreme's security team and he, John and Wayne have just been fantastic to me as well as Todd and Nathan from the production team and all the volunteers. I don't feel out of place anymore and I'm always caught offguard when someone hears that I'm Tina's sister and they get so excited and want to know about Job.

I also want to thank Sarah Hargrove for being such a good friend to my Mom. Sometimes Mom gets a bit overlooked with all the hubbub but she has been tireless in taking care of Job. She's been with him since he was born and is still with him all the time, 24/7, giving him his bath, helping him go to the restroom all through the night, staying up 24 hours at a time to just comfort him when he's hurt or scared, cleaning him up when he's sick and laughing with him when he's well. Sarah said that Mom is an unsung hero here and, while I know Mom would say that she was just doing it all because she loves Job, I just want to tell everyone how proud I am of her and how happy I am that she has such a good friend in Sarah Hargrove.

Back to the site for me!

Aunt Tammy

Tuesday, August 19, 2008 3:34 PM CDT

I hope you are all able to make it to the photo shoot. I wasn't aware of it until about 30 minutes ago and my son had just taken the car to see his Dad, so I won't be there but you guys smile big enough to represent me too!!

I had such a great time last night working on the house! My cousin Loretta (she's only a couple of years younger than Mom because her Mom is the oldest of the girls and mine and Tina's Mom is the youngest so she's more like my Aunt) and I had a mini family reunion in the middle of doing whatever chores and cleanup work (including minor medic duties) they needed. By the end of the shift, we were completely exhausted but only part of the exhaustion was from hauling cardboard and lumber scraps down to the dumpster. The other part was from the sheer joy of the night and our hysterical laughter (like when Retta told me that when she was 2 or so and Mom was 5 or so, she bit Mom so Mom talked her into putting her head in the window and then rolled it up just enough to trap her there so she couldn't bite her anymore!) and other old stories about Tina getting in trouble for riding the hogs with the neighbor boy and our Grandma (Mom's Mom) believing that sometimes electricity gets clogged up in the end of the plug and you have to unplug things periodically to clear it out!! Grandma was really smart so this little quirk was a bit out of the ordinary and made it that much funnier.

The house is beautiful but I'm sure you can see that from the pictures. I won't talk about anything in detail since you can see it on the other website and I don't want to risk saying anything I shouldn't, but it's just thrilling to be a part of building of (ok...cleaning up after the builders) my family's new home. I've been all through the house and all around it working but the producers of the show have NOTHING to worry about with me. I understand that they typically would prefer that the "VIPs" just "spectate" (Retta knows what I'm talking about!) rather than actually work, but the last thing in the world I would EVER do is to try to find a way to tell them what's going on with their house. I don't want them to know a SINGLE thing until that bus moves!

I'm headed back out there tonight to work the midnight shift again with Retta's daughter Christi and expect to work and laugh just as hard. In the meantime, I'm going to keep doing whatever I can here at the rental (not really sure what to do other than laundry and general cleaning but at least I'm babying the dogs while I'm here).

I can't wait to see them on Thursday!! I usually talk to them so much that I'm having withdrawal pains!!!

Aunt Tammy

Sunday, August 17, 2008 7:47 AM CDT - {See below for the UPDATE from 5:30pm}

Wow what a day! We had to sign a confidentiality agreement (just standard stuff) so if you want to know any details of the construction itself, you should check the website thehousejackbuilt.com. I will just let you know that the community turned out in huge numbers. I can't speak for everyone else, but Justin (my son) and I have decided that Hollywood is not really for us, LOL. There's a LOT more waiting (and oddly...physical exertion) that goes into making a show like this than we ever knew about.

We had been up all day and driven 14 hours through the night, then spent another 5 1/2 hours at the site before sleeping so were exhausted but it was worth it. I know that a lot of the community members don't even know who I am so it's a bit strange for me to be here without Mom and Tina but they are a wonderful group and I'm sure they know how much I appreciate everything they are doing for my family. While it was hard to watch the demo of the house, it was also a HUGE relief. That house was very scary (mold, fungus, etc.) and I'm just thrilled that none of my loved ones will ever have to sleep in it again.

Gizmo and Gracie were really happy to see us and I know that Mom and Nicole are relieved that their babies are getting some lovin' from Aunt Tammy while they're gone on their beach front vacation.

The weather is really holding up for us and there's been a nice cool breeze. It did get hot yesterday and they had to keep us hydrated. We did have one medical scare there but ultimately the gentleman seemed to be coming around fine due to the wonderful medical volunteers who were right there to help.

Job did have to receive platelets the night before they were able to go to Santa Barbara but they did in fact get to go on vacation. They sure needed one!!

Aunt Tammy

UPDATE: Job's Rhino Trike came in and I have it all assembled and ready for him when he gets back. I know that Tina has expressed her extreme gratitude for the donation but I wanted to add mine to the mix as well. Job is going to love it and we are very hopeful that the strength he gains from it will get him out of the wheelchair sooner. The other thing I wanted to tell everyone is that the McCully's (including Mom/Grandma) are on communication lockdown so are not able to read any of the postings right now. However, I know for a fact that each and every one will be read when they return and if it counts for anything, I am reading them daily (whenever my internet connection holds up for me) and I am getting a lot of encouragement from them myself. Justin and I are on midnight shifts starting tomorrow but we are going to go out tonight to just observe this fantastic event and see the progress they've made from the demo yesterday.

I'm sure I'll see some of you out there (even if most of you won't recognize me, ha).

Thursday, August 14, 2008 2:08 PM CDT

EXTREME MAKEOVER - HOME EDITION IS BUILDING JOB A NEW HOUSE!!!!!!!!

Hi everyone, this is Aunt Tammy. The McCully's (including Grandma) are in communication lockdown but it is now official that Ty Pennington and his crew of designers have shown up at their house and have whisked the family off to parts unknown. See the website www.thehousejackbuilt.com for the official notification. I don't know much more than this now. I am heading to Arkansas tomorrow to participate in the building of the home (probably just hauling trash, LOL but that's okay too).

I'm sooooooooooooooooooooooo excited!!!!!!

Tammy

Monday, August 11, 2008 10:59 PM CDT

They took Job off Vanc today and put him on a more kidney friendly oral antibiotic. The type of staph they identified supported this decision. Job received a blood transfusion today. Yup, you know how these meds do, they suppress his bone marrow. His plateletts have been low also. On Saturday morning they were at 45k (normal is at least 150k).

Job has been feeling fine and playing his video games as best he can without cheat codes LOL. He had his grandma stop by Wal-Mart and pick up a Game Shark this afternoon and would you believe that the thing will not work. She is going to exchange it tomorrow for another one. Hopefully it will function properly. His dad said he had a good PT session this morning too.

Check out this scripture that was read during our Sunday School class yesterday...

Psalm 46:1-3
God is our refuge and strength
A very present help in trouble
therefore we will not fear,
though the earth should change
and though the mountains slip in the heart of the sea
though its waters roar and foam
though the mountains quake at it swelling pride.

Below is what I wrote in my notebook below the scripture during our lession...

I will not fear CMV
I will not fear Staph
I will not fear timing
I will not fear death
I will not fear suffering
I will not fear because God is my refuge and strength
I will not fear because God is a VERY PRESENT help in trouble.

I am determined to hang on to God no matter what is happening to us in the physical realm. All that we see is only temporary. God is eternal.

Tina

Friday, August 8, 2008 5:03 PM CDT

Job was admitted to the Arkansas Children's Hospital today for a 5 day dose of Foscarnet because of the CMV continues to rise. He will be discharged on August 13th. They are also going to give him some antibiotics and Cytogam to boost his system up also.

We were disappointed to be admitted but encouraged that it is only for a limited five day treatment. Dr. Saylors said that they have given Foscarnet as an out-patient treatment plan in the past as long as the patient can manage the electrolites at home. He said it was given as a twice per week infusion in the clinic. Anyway, it is an idea for us going forward. We are confident that this five day treatment will be effective in bringing his CMV level down quickly and then we can come up with a long-term plan. Remember last time his CMV was at 800,000 and within a week it was down to 8,000. It is at 474,000 right now.

Dear Lord please heal Job's little body.

Tina

Friday, August 8, 2008 5:03 PM CDT

Job was admitted to the Arkansas Children's Hospital today for a 5 day dose of Foscarnet because of the CMV continues to rise. He will be discharged on August 13th. They are also going to give him some antibiotics and Cytogam to boost his system up also.

We were disappointed to be admitted but encouraged that it is only for a limited five day treatment. Dr. Saylors said that they have given Foscarnet as an out-patient treatment plan in the past as long as the patient can manage the electrolites at home. He said it was given as a twice per week infusion in the clinic. Anyway, it is an idea for us going forward. We are confident that this five day treatment will be effective in bringing his CMV level down quickly and then we can come up with a long-term plan. Remember last time his CMV was at 800,000 and within a week it was down to 8,000. It is at 474,000 right now.

Dear Lord please heal Job's little body.

Tina

Thursday, August 7, 2008 7:24 AM CDT

We went to ACH for IVIGs yesterday. It took about four hours. Job slept the whole time. He needs IVIGs every three weeks.

On Monday the eye doc gave us some ointment for his eyes and they are looking better already. His mouth looks beautiful. I need to get some new photos on here so you all can see.

I talked to the school counselor the other day and we are getting a plan together for Job to start school. We have a meeting next Tuesday to discuss everything with her as well as the nurse, principle, etc.

You know that Job was in the hospital during the 4th of July. We are going to have our own 4th of July celebration this weekend. We have fireworks and hot dogs and the works. Someone mentioned having a bon fire and roasting the dogs... hum... it is 102 degrees outside. We can probably just sit the dogs on the dash of the car and that would do the trick. HA. Well, if they do build a bon fire you can be sure that I won't be anywhere near it.

We still haven't got his trike nor his glasses. We are all very anxious to receive both.

Still praying that God will heal Job of CMV (and diabetes)!!! God knows how to rescue us!!!

Here's a scripture for you to think about today. Think about how you can apply this to your life.

1 John 3:16-18 (NIV)
"This is how we know what love is: Jesus Christ laid down his life for us. And we ought to lay down our lives for our brothers. If anyone has material possessions and sees his brother in need but has no pity on him, how can the love of God be in him? Dear Children, let us not love with words or tongue but with actions and in truth."

Tina

Tuesday, August 5, 2008 9:26 AM CDT

I found a great scripture this morning. A wonderful one to stand on while we are praying for Job to be healed of this CMV infection.

2 Peter 2:9 "...the Lord knows how to rescue godly men from trials..."

Isn't it wonderful to realize that God KNOWS how to rescue Job. We don't. We don't have to know. We just have to believe and have faith that GOD KNOWS how to rescue Job and the rest us all from our trials. God knows how to rescue YOU too. No matter what your problem is, God is your HOPE.

God Bless,
Tina

Monday, August 4, 2008 2:43 PM CDT

We are at ACH today getting our 4th dose of Cidofovir. We are almost finished and then will head to the eye clinic for a follow-up. All is going well.

Thursday, July 31, 2008 10:31 AM CDT

Sorry, we still have not got the results of the CMV test that was ran on Monday. Job had his first physical therapy session on Tuesday at Pediatric Plus. It went well. I was concerned about how much he had regressed, but I don't think we lost much ground. The biggest loss was time of not gaining ground. In my opinion, he's about where he was when we left for St. Louis. The therapist said that he has the strength, but lacks the range for walking. His hips, knees, and ankles are the areas he need the most work. She showed us some positions to place him in thoughout the day to help with stretching these areas.

I also want to praise God for West County Assembly of God of St. Louis for their great gift of a Rhino Trike. They donated the money for him a trike to help him strengthen his legs. I ordered it last Thursday so it should arrive within a week.

Job is really feeling great. We went to the see Dr. Philips yesterday for a follow-up with his eyes. We were at the eye clinic for about 5 hours or so. He was singing with his ipod, visiting with people in the waiting room, and just very happy. It really shows how much better he is and his mouth is. Dr. Philips said his eyes looked really good and believed that Monday's drama was just due to allergies or something maybe from the clorine in the pool that he was swimming in on Saturday. They gave us a prescription for glasses so after we left there we made a bee-line to the eye center to get his glasses ordered. We should have them in a week or less. YIPEE!!!

Thanks for all your prayers.

Tina

Tuesday, July 29, 2008 9:10 AM CDT

Submission is a controversial word. Just mentioning submission stirs emotions. I had a lesson on submission yesterday…submitting to medical authorities.

As you know we went to ACH for his third dose of Cidofovir. Everything associated with that went fine. The problem was with Jobs eyes. They were swollen more than usual. His bottom eyelids were especially swollen and red. He complained of pain and burning so much that he didn’t want to open his eyes. We all started wondering if he had CMV in his eyes. Dr. Saylors and Catherine made arrangements for us to get in to see Dr. Philips after we finished our Cidofovir infusion.

Dr. Philips and his staff examined Job’s eyes and were especially concerned about the pain that he was complaining about. Job would scream in pain at the least little touch under his eye. Job is hypersensitive to pain and generally over-reacts. However, you can never really tell. The doctors took the pain very serious and wanted to do an MRI right away. We had arrived at the hospital at 8:00 that morning and it was about 5:00 at this time. They told us that depending on the MRI results that either he would receive oral antibiotics or be admitted to the hospital for IV antibiotics. Job immediately started crying. He said why do I always get admitted. I calmed him down, telling him that we still didn’t know if that was going to happen. All when this was happening, the doctor was on the phone with one of our oncologist, she was saying that Job should be admitted regardless of the MRI results. They then called our pulmonary doctor and he agreed that he should be admitted.

While they were loading Job on the MRI bed, the doctor was telling me that the oncologist and pulmonary docs both agreed that he should be admitted regardless of the MRI results. I told her that I needed to call someone in St. Louis and talk to them about all of this. I didn’t have my phone numbers with me. The MRI tech was standing out in the hall waiting on me to start the test. Through tears I told the doc to just wait a minute and let me go sit with Job for the test and then make some phone calls.

I sit in there during that MRI test crying and praying. Wondering what I should do. I thought about what would happen if I called Dr. Faro. He is not here to see Job. He would have to agree with the doctors who are here making the diagnosis. That is the safe decision. I thought about just saying NO. As a mom don’t I have that right? Well, maybe if God had directed me to make such a decision, but He had not. I just wanted to go home because I didn’t want Job to be back in the hospital. It then occurred to me that it is not about what I want or what Job wants. We have constantly prayed that God give our doctors wisdom and direction to care for Job and that we must submit to that authority. Submit to God and the medical authorities that He has placed over us. I cried.

About 30 to 45 minutes into the test, the machine was stopped so the tech could place the contrast into Job’s bloodstream. I stepped out for a minute during this time and told the doctor that there was no reason for me to call St. Louis. I know that they would agree with your recommendations. I told her that I just wanted someone to tell me that we didn’t have to stay. Tears filled my eyes as I walked back to the MRI room understanding that we would be admitted after the test. I knew Job would be crushed. The test took another 30 minutes or so before the tech opened the door and said it was complete. I was wondering how to tell Job the bad news gently when the tech burst out with “YOU KNOW THAT YOU ARE BEING ADMITTED RIGHT.” Job immediately started crying. I picked him up in my arms off the table and sit him in his chair just outside the door. I knelt down on the floor in front of him and just held him and we cried together.

After a few minutes, the tech said wait just a minute, maybe you won’t be admitted after all. He said the docs are discussing it. The doctor then came over and confirmed what the tech had just said. She said the MRI looked better than anticipated and that maybe admission would not be necessary. She was still calling the rest of the team to get their thoughts before making a decision. Job and I were sitting in our little room at this time and I said a little prayer out loud with him. I asked him if he had prayed and he shook his head “no”. I told him that he needed to pray and ask God to have mercy on him and to let him go home. When he started to open his mouth to pray, then he just began to cry. I told him that he didn’t have to say the words out loud, he could just pray from his heart and God could hear him. So that’s what he did.

The doctor came in after a few minutes and said we didn’t need any antibiotics (oral or IV) and we were free to go. The MRI must have not shown any infection at all. We are to go back to the ophthalmologist on Wednesday for a follow-up.

Did you see how God walked me through submission to the medical authorities and then set us free HIS way, not mine. If I had left on my own, what a heavy weight that would have been to carry. It would be different if I had some divine revelation from God to leave, but I didn’t. It was just my own will. Once I submitted, then God took care of things.

I think Job also learned a lesson about over-reacting to pain. Before we left, the doc touched Job’s eyes and they barely hurt at all. He will not admit that he was over-reacting. He definitely realized how serious the doctors take pain.

God bless you all and I pray that you have success submitting to the authorities placed over you.

Tina

Monday, July 28, 2008 11:06 AM CDT

We are at ACH for our first appointment in Little Rock. We are getting our 3rd dose of Cidofovir today. They are running another CMV PCR also, but results will not be in until tomorrow. Job's eyes are really bothering him this morning. I pray that he is not getting CMV in his eyes. They are really swollen and sore. They are going to get an ophthamologist to take a look.

UPDATE: Catherine just came and said that we are to go see Dr. Philips (our Ophthamologist) at 2:30 this afternoon.

UPDATE AGAIN: I found an interesting article on Cidofovir on the net. Check out this quote: "Cidofovir should also be considered as second-line therapy in patients with CMV disease failing to respond to ganciclovir or foscarnet (54, 129). According to a case report (28), cidofovir effected a complete resolution of CMV retinitis, CMV encephalitis, and CMV esophagitis after only 2 months of intravenous therapy and after initial attempts to stop the disease with ganciclovir and foscarnet had been unsuccessful." (http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=207110)

That is very encouraging, complete resolution after 2 months of IV therapy.

Tina

Thursday, July 24, 2008 7:15 PM CDT

MAN-O-MAN it is so good to be home!! The trip home was so great and easy. We arrived at nine o'clock last night. Job was on the phone making arrangements for his friend Bradley to come over and play video games on Saturday before we had even made it all the way home. Florence and Andy Rappold brought their kids over today to visit for a while. It is so great to be around our family and friends again.

I've got to get him back in physical therapy with Ms. Tabatha and hooked up with Mrs. Starks to get his tutoring started so he can be more prepared for the 5th grade.

We have to go back to SLCH in September for his 9 month evaluation and then again in December for the one year eval. Hopefully those trips will not last as long as this one.

We still have a war going on with the CMV, please don't forget that. We are going to ACH each Monday for a dose of Cidofovir until we get ahead of this enemy. On the drive home yesterday, Grandma and I were discussing all the devestating illnesses and issues that God has brought Job through. All seeming to be teetering on the edge of death, but God delivered him from each and every one. He will do the same with this CMV. God is our deliverer. God is our healer. We have nothing to fear!!

Praise God for the wonderful medical team at SLCH. We love them all very much.

Tina

Tuesday, July 22, 2008 5:20 PM CDT

GOOD NEWS!!! We get to go home tomorrow. Thanks for all your prayers, they sure help turn things around. Turns out the doctors were not surprised that it will take multiply doses of Cidofovir to do the job. I thought that since the first dose did not bring the CMV down, that it had failed. They is will just take multiple doses before we see a response.

Everything else looks good and so we are headed home tomorrow. He will be getting subsequent infusions of Cidofovir in Little Rock at Ark. Children's Hospital.

Thanks again for all your prayers. Please keep them coming until we defeat CMV once and for all.

Tina

Monday, July 21, 2008 5:18 PM CDT

Sorry I have not posted anything in days. We have all been praying and holding our breath for the CMV PCR test results. I waited and waited and finally called just now to get the results...

He is CMV positive at 52,000, up from 11,000 last Monday. The Cidofovir did not do what we had hoped. The plan was to give him another dose tomorrow, but now I have no idea. They mentioned taking him off Prograf (the immunosuppression medicine) so that his own body will be able to fight. This is so serious. If the CMV is not stopped it will take Job's life within a month or two. I do not believe that is God's plan, but we must fight spiritually. God is the only one who can rescue Job from CMV.

Please pray.

Tina

Thursday, July 17, 2008 4:36 PM CDT

Please, if you are willing, please fast a meal for God to deliver Job from CMV. We need God to rescue Job from this virus AND the medicines. Please pray his test will be negative and remain negative.

Tina

Wednesday, July 16, 2008 7:11 PM CDT

The Cidofovir dose went well yesterday without any adverse affects. His kidneys are hanging in there.

Job got discharged today. We still have to stay in St. Louis for another week, but we should be heading home on Wednesday or Thursday. Here is the plan:

(1) July 16th - Discharged
(2) July 20th - Go to ER for CMV PCR blood draw
(3) July 21st - labs, PFTs, clinic, and GET RESULTS OF CMV PCR. The results of the CMV PCR will tell us what to do next. If it has gone down significantly or is negative, then we do not have to have another dose of Cidofovir on Tuesday. If it has done down some then we will get another dose. If the CMV level has gone up, then we have a serious problem.
(4) July 22nd - potentially get another dose of Cidofovir which will take all day in the infusion clinic.
(5) July 23rd - labs to verify kidneys are okay. If all is well then we will be released to go home.

Please pray that this CMV test will come back NEGATIVE. Please pray.

Tina

Monday, July 14, 2008 9:29 PM CDT

The CMV came back "positive at 11,000". The lowest detectable level is 2,000...

I guess that is why the Lord has been telling me not to fear over the past few days.

Today, before I got the test results back, Job and I were up in the PAWS unit getting his whirl pool treatment. He had already got out of the tub and was laying on the bed. He had his eyes closed and was relaxing in the warm blanket that the nurse had given to him. The nurse had stepped out of the room for a moment. I leaned over and stroked his eyebrow and smoothed his hair around his face and talked to him softly. I told him that we had nothing to fear. I ran my finger across his little, round cheek and told him that God was in control of everything. That God had power over everything and that he would be getting better and better everyday and he would get out of the hospital soon. My phone rang and Grandma proceeded to tell me the CMV test results as the nurses came back into the room. I could hardly believe what I was hearing. My mind raced. I could barely focus on what the nurses were saying. My heart hurt. WHY IS THIS HAPPENING I shouted inside of my own mind all while trying to keep my composure. Then I remembered... DO NOT FEAR... Jesus has SET ME FREE from the FEAR OF DEATH AND DISEASE.

I WILL NOT FEAR CMV!!! God is the only one to fear. He has all the power.

I was thankful to hear that they were not considering putting him back on Foscarnet. I would never have allowed it anyway. They are going to give him a dose of Cidofovir in the morning. It is usually given to treat adenovirus, but also treats CMV. It is a once-a-week treatment verses the 3x/day Foscarnet. The plan is to give him one treatment in the morning, check his CMV PCR next Monday, give him a second dose and then send us home on Wednesday approximately.

Tina

Monday, July 14, 2008 11:28 AM CDT

Job is doing well drinking the Ensure. His white count is up (on its own) to 9.9. Hemoglobin is 8.8, crit is 26.5 and platelets are 154k. We are very please with these results especially the white count and the platelets. We are stopping the Vanc because none of the cultures are growing anything.

His wounds are healing and looking better. His bottom is still sore but better and his lips are better also. His tongue is what he complains about the most, but it is better than yesterday.

We are waiting on some important test results today. The CMV PCR will be back around 3:00. Remember we are praying for a negative or a positive at the lowest detectable level. Either of those results will get us home this week. We are looking at going HOME not to ACH too. I believe it is going to happen by the end of the week.

We are also waiting for the biopsy results. They are suspecting something about his skin problems being GVH, which is ridiculous. He is 6 years out from his BMT and hasn't had problems with GVH in 5 years. He even went years without any immunosuppressant (except prednisone) without one symptom. Basically that tells me that they absolutely have NO CLUE as to why his mouth and bottom started breaking down.

The good new is that I AM FREE!! Yes, according to Hebrews 2:14-15, I no longer have to live in slavery because of the fear of death. Jesus set me FREE!!! Jesus set me free through his sinless life and death on the cross. He took the power of death away from the devil. I no longer have to fear anything but GOD ALMIGHTY. He has supremacy over everything. PRAISE GOD! I AM FREE.

Tina

Saturday, July 12, 2008 5:49 PM CDT

Job's procedure went good this morning. His throat looks good and has no sores or lesions in his esophagus or stomach. His colon also looked good too. So, basically what we are dealing with is what we can see. We were all happy to hear that news. They took several biopsies including one of his lip and ear. This all left him very sore. His throat is especially sore since they had to place a breathing tube in his throat for the procedure.

All and all he is doing well and has been drinking his Carnation Instant Breakfasts (CIB) like a champ. I bought him some Ensure today and hope that he likes those. If he does, then he won't have to drink as much because they are 355 calories each verses 250 for the CIB.

By noon today he was up playing Bejeweled on the computer.

Thanks for all your prayers. I can sure see God's hand at work.

Tina

Saturday, July 12, 2008 8:04 AM CDT

Praise God for all your prayers. Yesterday was definitely a better day. He looked and felt so much better. He has his normal color back in his face. He painted for several hours yesterday. He has really been enjoying arts and crafts.

They rescheduled the scope for this morning. He is actually in the OR as we speak. They are doing a colonoscopy and an endoscopy plus taking biopsies of his lips and ears. The thing that makes me the most nervous is the breathing tube that they are placing for the procedure.

Job was more talkative yesterday and was talking about what movies he wants to see. Maybe he will feel like a pass today or tomorrow. He hasn't even felt like going out of pass the last few days.

He doesn't have his feeding tube in at the moment. It got clogged up yesterday evening and he begged them to leave it out. All he has to do is consume enough calories and we can leave it out. Please pray that he is able to do that and doesn't have to have that tube put back in.

Please continue to pray Job HEALTHY and us HOME.

Tina

Thursday, July 10, 2008 9:00 PM CDT

I am so sad. Job is so miserable and in so much pain. He hurts all over. You can barely touch him without hurting him in some way. They started him on Vanc tonight and are running blood cultures. They are also going to send him to the OR tomorrow to look at his throat and bottom with a scope and maybe even takes some biopsies to find out what is going on with him.

He is suffering so much. I can hardly look at him without crying. It is very difficult to see your child in so much misery and not know how to help. Please God, have mercy on Job.

Tina

Tuesday, July 8, 2008 12:09 AM CDT

This is the plan... We pray that he heals and recovers from the treatment over the next week. Next Monday they test for CMV again. If the test comes back "positive at the lowest detectable level" (which is what it has been for weeks now) or negative (by God's power only) then they discharge him and send us home.

Tina

Monday, July 7, 2008 10:34 PM CDT

The CMV test came back positive at the lowest detectable level again. The consensus is that it may never be negative. They have stopped the Foscarnet. Please pray that his own immune system will be able to keep the CMV at bay.

The feeding tube is in and they will feed him from 8 pm 'til 8 am. Hopefully this will help him heal from all his wounds.

Praise God that He has supremacy over CMV!!!

Tina

Sunday, July 6, 2008 9:27 PM CDT

Job and I continued to run fever today so no trip to church. Also, we are reconsidering the feeding tube. Yeah, yeah, I know what I said, but his doc says that one of the reasons that he is not healing faster is because he is not getting enough calories. So we basically agreed to do it today, then the staff wanted to wait until tomorrow. Job started crying and was very upset about it. I told him that all he had to do was eat. He said that he would do better today. If he gives it a good effort, then we will hold off on the feeding tube a bit longer.

Florence made it safely to St. Louis today. She is going to spend the next two days with Job. Nicole is there too helping out. She is such a life saver. PRAISE GOD FOR FLO!

I kept praying to God about all that is happening today and what came upon my heart was praise. To praise God regardless of the physical circumstances. To praise God for His perfect timing. To praise God that He has Job's health (and mine too) in the palm of his hand. To praise God for His supremacy. Please join me in this praise. Help me praise God for all that He has done and is doing for Job. Please let the heavens rock with the sound of our praise together. Everytime you start to complain about something, turn it in to a praise. If you hate your job, then praise God that you have one. If you hate your bed, then praise God that you are not sleeping in a chair. If you are frustrated at your spouse, then praise God that you are not alone. Turn all your complaints into praise, especially when you think about Job and my family.

Tina

Sunday, July 6, 2008 6:55 AM CDT

Job and I both spiked a temp yesterday. I haven't had a fever in years. This morning my temp was 101.7. Florence Rappold is on her way to save the day since I have banned myself from Job's room. It is difficult for Grandma to stay two nights in a row much less more than that. I haven't heard if Job's fever came back after the first round of tylenol. The docs were going to arrange it for Job to go to church today too, but now I don't know. I suppose as long as he hasn't had another temp, then Florcence and Grandma could take him.

Thanks for all your continued prayers. We sure needs God healing had and deliverance right now.

Tina

Thursday, July 3, 2008 12:34 AM CDT

The doctors really want Job to eat. They have loosened the rules on his diet to include more of his favorite foods. We just should still watch those fat grams. They are giving him a 3-4 day trial and are talking about placing a feeding tube if he doesn't eat enough. Let me tell you that is not going to happen. They will not put a feeding tube in unless it is over my screaming body.

The docs also said that Job's CMV test may not ever come back negative and that we have to come up with an alternative treatment plan verses him spending the rest of his life in a hospital. Well, I can absolutely tell you right now that he is not going to spend the rest of his life in a hospital. I am ready to tell them to stop the Foscarnet right now and work on getting us discharged. I talked to Rob about this and we are both going to pray about it until Monday's test results come back. IT IS NOT God's plan to have Job spend his life in a hospital. I WILL NOT FEAR CMV or any other crap the enemy wants to throw our way. God is bigger than all of this. Our Savior did not suffer and die on that ugly cross just so we could live in fear. We should only fear God and nothing else, not test result or triglicerides or CMV or anything else.

We should only have hope in God as well. The doctors and medicines are only God's tools. He is ultimately responsible for everything. He has supremacy over everything, everyday even death and disease. This illness and disease CANNOT take Job's life. Only God can decide that Job's purpose on earth has been fulfilled and call him home to heaven. ONLY GOD can make that decision.

We seem to continually be faced with issues where the doctors have done all they know to do and we are forced to depend on God alone. Which is what we should be doing all along.

IN CHRIST ALONE MY HOPE IS FOUND.

Tina

Wednesday, July 2, 2008 9:13 AM CDT

I just got an email from my sister who stumbled on a site that had an article and photos of Job's homecoming in March. Here is the link: www.ridingsouthmagazine.com/jobride.html

I added new photos (click here). The first one shows Job's poor little lips and mouth. The other two are some shots of us at the Gateway Arch on Sunday.

The doctor came in this morning and said they were working on transferring us back to Arkansas next week. I would rather be discharged, but if that isn't going to happen then I would be glad to be closer to home.

We are still hanging on here. Just wishing we were out of the hospital. At least he is geting a 4 hour pass on most afternoons.

Here's a thought for you from the Downpour book I am reading (page 135) "If I fear God, I'm very careful to do exactly as He asks, as quickly as I can." Remember Prov. 9:10 says "The fear of the Lord is the beginning of wisdom"

God Bless,
Tina

Tuesday, July 1, 2008 7:52 AM CDT

The CMV PCR test came back positive at the lowest detectable level again yesterday. That is the 3rd Monday in a row that we have heard the same news.I don't know what the plan is now. We were all hoping and praying that it would be negative this time.

His white count is back in the normal range and his hemoglobin is holding steady at 8.4.

Tina

Friday, June 27, 2008 9:42 AM CDT

Job's white count was up to 3.8 yesterday!!! We are very happy about this. He had fun at the science center although we didn't get to stay as long as we would have liked.

I am reading a book called "Downpour, He will come to us like the rain (God's best when you need him most)" by James MacDonald. It all about revival... personal revival. It is a wonderful book. One quote I want to share is from page 114, "You don't get to a better place with God until you recognize that where you are is not as good."

Through studying this book yesterday, I stumbled on the following scripture which really made me think. Whether God has plans to punish us for our unrepented sins, or He has promised us great, wonderful things, neither is unconditional. If we repent of our sins, He may not bring the punishment upon us. In the same way, if God has plans to bless us but we forget Him and allow ourselves to fall into sin, then he may change his mind about the blessings he has planned.

Think about this for a moment:

Jeremiah 18:7-10
"At one moment I might speak concerning a nation or concernning a kingdom to uproot, to pull down, or to destroy it; if that nation against which I have spoken turns from its evil, I will relent concerning the calamity I planned to bring on it. Or at another moment I might speak concerning a nation or concerning a kingdom to build up or to plant it; if it does evil in my sight by not obeying my voice then I will think better of the good iwth which I had promised to bless it."

Wednesday, June 25, 2008 11:15 PM CDT

Job continues to have a lot of pain in his mouth and bottom. We are trying everything. They are trying creams from the burn unit on his bottom and mouth swishes from the hem/onc unit for his mouth. No one knows why these sores are happening nor why they seem to be spreading. They have consulted dematology, but they haven't made it by yet.

They gave him platelets yesterday and decided to give him a daily dose of Nupagen. I thought they had already "started" him on Nupagen, but come to find out that was just a one time dose before. It did help his white count, but after four days it was back down to where we started.

They are still talking of transferring to Ark. Children's, but want to get him patched up better first. Of course, we are all hoping that we will be out of the hospital in a couple of weeks, and if that is the case then there would be no reason to transfer. We are just keeping that in our back pocket. They do not want to transfer him with all this skin breakdown and no sense of improvement.

We didn't get a pass today, but we are getting one tomorrow. They are going to continue to give him afternoon passes as much as possible to help him deal with a long hospital stay. We are planning to go to the Science Center tomorrow. They have a monster exhibit that we want to see.

They will retest him for CMV on Monday as well as triglycerides. I will let you know what we find out. Until then it is just more of the same around here.

Tina

Tuesday, June 24, 2008 0:27 AM CDT

I created a page that shows some of the previous front page photos. Click here if you would like to see it. I hope the link works for you.

Job felt really good this evening. He was laughing and playing his video game and acting more like himself. He got another pass today and we all went to the RMH and watched a move on one of the big screen TVs.

Oh, his CMV test came back "positive at the lowest detectable level" again today. I was really expecting it to be negative this time. I have no idea when they will check it again.

Tina

Saturday, June 21, 2008 2:26 PM CDT

New photos posted.
Click here to see the previous photos.

Job had fun on his pass today. We went to the RMH and the kids played video games on one of the big TVs. He cried and cried when it was time to go back to the hospital. He said that he just wants to go home where we can all be together again.

Rob is going to come up next weekend. We haven't seen him since May 31st. We all are looking forward to his visit.

Job is still in a lot of pain. Please pray that the areas on his bottom and his mouth will heal and that the pain stop.

Tina

Saturday, June 21, 2008 10:59 AM CDT

Job gets another pass today. They want us to stay clear of large crouds this time... well, they probably did last time to, but we didn't ask. Someone said to me, well he must be doing okay if they let him go to the zoo. LOL umm, they didn't actually give us permission to go to the zoo... they gave him a four hour pass and we used it to go to the zoo. They didn't tell us that we coudn't, but we didn't exactly ask either.

We are just going to bring him back to the RMH today for a quiet afternoon out of the hospital. I think he feels a little better today, but his bottom and mouth are still extremely sore. Please pray that God heals these wounds.

Tina

Friday, June 20, 2008 6:49 PM CDT

Job's blood counts continue to decline:
Hemoglobin = 5.9 (normal is 8 - 11)
white cells 0.9k (normal is 5k - 10k),
red cells 1.84 (normal is 4.2 - 5.9),
Hematocrit 18.6 (normal is 37 - 52),
platelets 36k (normal is 150k - 400k)).

After much discussion today, they decided to give Job a blood transfusion. He is getting it as we speak. They are not going to give him platelets unless he drops below 20k . They will begin him on Nupagen tomorrow which will help build his white blood cells . Hopefully this will help him feel better and especially help his body heal his wounds. He has areas on his body (his lips and bottom) that are raw and sore and continue to get worse rather than better.

Pastor Todd stopped by this morning and prayed for Job. He prayed that Job's pain would stop! We are believing that this will happen right away.

On another note, his triglycerides are down to 736!!!. Remember, they were 2,520 last Thursday. No one expected them to be that low today. I was told to just hope they were continuing to decline, but not to expect much of a difference. We were all very excited at that news. The short term goal was to get it under 500 ASAP and then continue to work on getting it back into normal range of under 200. THIS IS A GREAT VICTORY ALREADY. PRAISE GOD!!! and thank you all for your wonderful prayers.

Tina

Thursday, June 19, 2008 1:52 PM CDT

Job got a four hour pass today and gets to go to the zoo!!! He is very happy to be able to get out of this room. He was only allowed out of his room a few days before they stopped that again, so today is the first time out of the room in about a week.

He was able to ride the tricycle around the halls of the hospital today too and he enjoyed that very much also. I am going to try and buy him a tricycle for him to use instead of his wheelchair. I think it would be great for him to have one of his own.

Tina

Wednesday, June 18, 2008 5:45 PM CDT

The plan is to continue Foscarnet until we have two CMV PCR tests that are negative (one week apart). We are not putting him back on Cellcept, which was one of his immunosuppression meds and we are keeping his Prograf level low. That is his other immunosupression med. That way his own immune system can help him fight the CMV and keep it at bay. They will monitor him with weekly blood tests and be able to catch it early if it starts to rear up again.

So we are looking at another week and a half of Foscarnet. Then, as soon as his blood recovers, then he could be discharged. I am talking about the severe anemia and neutropenia that has developed due to the medicines. We are hoping that stopping the Ganciclovir will help in that area, beginning yesterday. His white count is down to 0.7 and his hemoglobin is 6.x.

We are happy with this plan and very glad to see a glimmer of light at the end of the tunnel.

Thanks for all your prayers.

Tina

Wednesday, June 18, 2008 8:38 AM CDT

Job was able to eat some cereal with skim milk this morning. He didn't like the skim milk, but loved the cereal. They have loosened the reigns a bit on his diet. He is able to have 10 percent of his daily intake as fat. That is still not very much, but at least it allowed him to eat cereal. He had a chicken breast with ketchup last night for dinner. He enjoyed that too. He's not just jumping for joy about these foods, but he is happy to have something besides green beans and carrots.

Still waiting on the infectious disease team to have their meeting. I don't know what time it will happen. Job has committed to drink more water so that maybe he can be unhooked from his pole a little bit and maybe work towards a pass.

Thank you all for your prayers. It gives me the strenght to get up and fight another day.

God Bless,
Tina

Tuesday, June 17, 2008 9:25 PM CDT

I don't even know what to say. The prognosis looks grim due to Job's resistance to Ganciclovir. Foscarnet can only be given via IV and Job must have protection against CMV... so what to do.

The docs are meeting tomorrow to discuss Job's case and come up with a plan of action. Right now it looks as if our hospital stay may be longer than we ever expected. Job was crying this afternoon while Dr. Faro was telling us all of this and he asked to be transfered to Ark. Children's Hospital if he wasn't able to be discharged. Much to my surprise, Dr. Faro said that could probably be arranged. They must first come up with a treatment plan so they can communicate that to ACH upon our transfer.

I was very surprised by that response, mostly because it was letting me know that he felt we were in for a long hospital stay. Why would they transfer us if he were getting discharged anytime soon? After they talked with Job about being transferred, then I stepped out in the hall with the doc. He explained the gravity of the situation and how Foscarnet cannot be administered at home because of all the terrible side effects.

I will know more tomorrow after their meeting. I have been a bag of tears tonight. Job and I both have been crying together all evening. We just layed in bed and cried together.

Tina

Tuesday, June 17, 2008 10:27 AM CDT

Job IS resistant to Gancyclovir!

With this information, I am not sure what the plan is for preventing the CMV from coming back. We must depend on Foscarnet, which is working, but it is so hard on his little body. His white count is down to 0.8 today. That is the lowest it has been since his bone marrow transplant almost six years ago.

Today is day 14 on Foscarnet, but with the results above, I am not sure they will stop it even if his CMV PCR comes back at an undetectable level. They may continue until he shows up negative for CMV. However, remember that CMV never goes away (not without devine intervention anyway). It lies dormant in your body until an opportune time to flare up again.

I do want to share a scripture with you that has been on my heart. Actually, it came to my mind immediately when they first called us and told us that he had CMV and was being admitted to the hospital. It is Phil 1:18-19 "...Yes, and I will continue to rejoice for I know that through your prayers and the help given by the Spirit of Jesus Christ, what has happened to me will turn out for my deliverance." I believe that this situation, no matter how terrible it has been, actually was used to delivery us from something far worse.

One last thing I would like say. A prayer is on my heart. A prayer that I personalized from 2 Thes 1:11:I pray that God will count me worthy of my calling and fulfill every desire for goodness and the work of faith with power, so that the name of our Lord Jesus will be glorified in me, and I in Him, according to the grace of my God and Lord Jesus Christ. I hope this is your prayer also.

I also praise God NOTHING can happen to Job except that the Lord allows it. I thank Him that I am dependant on Him and not on fallible mankind and especially not myself. I praise God that Job's life and health are totally in his hands.

Tina

Monday, June 16, 2008 3:14 PM CDT

Job's triglycerides are down from 2,520 to 1,600, but that is still extremely high. He is still unable to eat anything but fruit and veggies. They really want this number under 500. Also his last CMV test was down to 8,000. They are retesting his CMV level again tomorrow and we are still waiting on the edge of our seat for the result of resistance study.

Tina

Saturday, June 14, 2008 10:03 PM CDT

We are staying at the RMH and different groups volunteer to serve dinner each night. I met some nice folks tonight during dinner and we began to chat over our meal. After a quick summary of Job's health history, a man asked how long we waited for lungs once we were listed. I replied, "well, he didn't get officially listed until May and he received his transplant in December." The man replied, "oh, only 6 months, that's not bad at all." ... I was kind of speechless for a moment. I thought, you have no idea. I kind of laughed and said, "yeah, only six months." He meant well and just has no understanding of what we have gone through.

It is strange to really think about it only being six months from the time he was listed until he actually received his transplant. It seems more like about ten years. The three months leading up to the listing date seem to not count in most people's eyes. Which, they really don't count when you are asking how long we waited. It seems we waited a lifetime and continue to wait for Job's health to be completely restored.

For those of you who have prayed and kept up with my family for the past year and a half, you know the weight of that comment... " Oh, only six months, that's not bad at all"...

Friday, June 13, 2008 11:59 PM CDT

I hope you all got to see the photos of Job's blood that I posted earlier. If you didn't then look in the Jounal History, not the Photo Album, for them. It is wild looking.

I just wanted to let you all know that his CMV test results came bact today at 8,000. That is down from 900,000 last week and 77,000 on Monday. We are all thrilled about this progress and really hope that in a few days the CMV will be GONE. Then we get this blood thing straightened out and hopefully we will be on our way home before you know it.

Nicole made it here safely. Job was so happy to see her. She came bearing all kinds of gadgets and games from home. He was very happy.

Good night all.
Tina

Friday, June 13, 2008 1:05 PM CDT

Below are some images of his blood. It is very wild looking and scary to think that is what is pumping through his veins. Job is not happy with his all veggie diet either. The one with the red cap has saline mixed with it so it is thinner than the others. The black top appears empty, but it is full of blood also.



This photo is of a small amount off blood that grandma put on ice.

Thursday, June 12, 2008 7:17 PM CDT

The problem with Job's blood is high triglycerides (a type of lipid).They are so high that they are visible to the naked eye. We could see them floating in his blood and after a few minutes, they seporated from the blood and formed a layer of about 2ml in a 10 ml syringe. I found the following info at http://www.webmd.com/cholesterol-management/tc/high-triglycerides-symptoms:

"High Triglycerides - Symptoms
High triglycerides by themselves do not cause symptoms. If your high triglycerides are caused by a genetic condition, you may have visible fatty deposits under the skin called xanthomas.

In rare cases, people who have very high triglyceride levels may develop inflammation of the pancreas (pancreatitis), which can cause sudden, severe abdominal pain, loss of appetite, nausea and vomiting, and fever.

Triglycerides are categorized as follows:

Triglyceride levels
Normal-------Less than 150 milligrams per deciliter (mg/dL)
Borderline---high 150 to 199 mg/dL
High---------200 to 499 mg/dL
Very high----500 mg/dL or higher

If you have high triglycerides, you may also have high cholesterol. In many cases, people don't know that they have high triglycerides until they have a blood test called a lipoprotein analysis to check their cholesterol levels.

If your triglyceride levels are high, your doctor will also check for and treat other associated conditions that may be linked to high triglycerides. These conditions include diabetes, hypothyroidism, kidney disease, and metabolic syndrome."

Job's triglycerides were 2,520!!! Like I said, I could see it myself. So he is on a VERY strict diet until all this clears up. Only green veggies and Carnation instant breakfasts. His diet did not cause this, but it will help resolve it. They are also giving him meds (fish oil or something) and putting his legs in some type of gear to help prevent blood clots. This is very serious and must be resolved ASAP.

Please pray.
Tina

Thursday, June 12, 2008 11:01 AM CDT

We have some drama this morning. Job has a temp of 102.4. He woke up almost every hour during the night to go potty ALL NIGHT LONG. Something is strange about his blood too. It had some particles in it when they drew it for labs. Some chrsyalization or something. They also suspect his lipids are high. They have checked his electrolites and they are normal. They are running some other tests to see what is up. I guess Job was bored today and wanted some drama.

Tina

Wednesday, June 11, 2008 11:14 AM CDT

Job finally got to get out of his room for a little bit today. He was allowed to go to the gym this morning for physical therapy. That is the first time he has been out of his room since he was admitted last Wednesday. They decided to allow him out and about a little bit as long as he wears his mask to protect him from the para-flu that is going around.

They have ran various tests and blood cultures over the past week and all have been negative except the CMV ones. So that is fantastic that he doesn't have something else going on too. He is tolerating the Foscarnet better this time and they are staying on top of his electrolites better too.

Nicole will be here Friday night. He can't wait until his sister gets here.

Please pray for Dalton Harding(www.caringbridge.org/visit/daltonharding/) and Ryan Patrick(www.caringbridge.org/visit/ryanpatrick/) who both are having a tough time right now.

Tina

Monday, June 9, 2008 11:04 PM CDT

I have great news!!! Job's CMV infection is down from 900,000 to 77,000!!! in less than one week of treatment. It is still considered a serious infection because it is over 50,000, but so much better. It is better than we all expected. Praise God for such wonderful results.

On another note, there was some sort of lab error on the resistance study that we expected to get back tomorrow, so they will have to re-run the test. That will take another week. We will not have those results until next Tuesday now.

Job had a great day. He was up in his wheelchair and out of bed all day.

Tina

Monday, June 9, 2008 10:29 AM CDT

All is clicking right along here. Job still has stomach problems, but otherwise is doing well. We should have some results today about how we are doing against the CMV infection. We were suppose to find out by tomorrow the results of the resistance study, but now they are saying we will not know until next week. I don't know why that is the case. I plan to talk to someone about it later today.

Thanks for all your continued prayers.

BTW, if you were wondering... Job is in Room 7W04B of St. Louis Children's Hospital. Sorry, I had forgot to update the data at the bottom of the page.

Tina

Friday, June 6, 2008 11:08 PM CDT

Thank You Pediatric Plus for the gift basket. Job loved it. It really brightened his afternoon.

He felt better last night and this morning. The Zofran really helped. However, they decided to give him the Foscarnet over one hour instead of two this afternoon and it really made him sick. He was throwing up and having diarrhea all at the same time. I talk to them and the nurse agreed with me that he needs to get the medicine over a two hour period, not one hour.

The medicine is throwing his electrolites off just like it did last time. His magnesiem and calcuim were low today. They are giving him fluids during the night that will be loaded with these supplements that he needs.

A few hours after the foscarnet ended he was feeling better and was joking around a bit and even ate a little supper.

He really wants to get out of his room and was begging them earlier today (before the Foscarnet) to let him go do something. He did get up out of bed to do some PT and play some video games. By the time Childlife came around to play games with him then he was already getting the Foscarnet and was feeling sick.

He was depressed about spending a potential two weeks in the hospital and I told him "that is a walk-in-the-park for us. Shoot, we could do that with our eyes closed. Other families panic about a two week hospital stay, but thats nothing for us." That got a laugh out of him. He really wishes Nicole were here. She will be here next weekend as soon as her basketball camp is overwith.

Good night all.
Tina

Thursday, June 5, 2008 4:24 PM CDT

The Foscarnet has really made Job sick. He hardly slept any last night. They are giving him Zofran now to help with the nausea.

The lung biopsy came back negative for rejection, but positive for CMV. They are also investigating whether or not the CMV is affecting his vision. I don't think so, but I am glad that it is being checked out.

Tina

Wednesday, June 4, 2008 4:48 PM CDT

The re-test for CMV came back positive as well. There are three scenarios that may have caused this relapse of CMV. (1) Job has became resistant to the gancyclovir, (2) Job's body is not absorbing the oral gancyclovir properly, or (3) Job is too immunosuppressed to keep the virus at bay.

We are looking at a few weeks of hospitalization. They are starting him on IV Gancyclovir and IV Foscarnet. They have sent blood to Chicago to test for resistance to Gancyclovir. We expect those results by Monday or Tuesday. If he is not resistant, then they will stop the Foscarnet. That is the medicine that was so hard on his little body back in February. They have also stopped one of his immunosuppression drugs called Cellcept and have cut his prograf dose in half.

He is doing fine expect for being a little depressed about being in the hospital again. We were suppose to be spending the day at the zoo not in the stinking hospital.

Tina

Tuesday, June 3, 2008 7:09 PM CDT

Hi everyone,

I just talked to Mom and she said that Job's CMV has come back with a vengence (his highest numbers back in Jan.-Feb. were in the 130,000's and his numbers today were in the 500,000's). His liver enzymes are really high too. They are admitting him again tomorrow morning for IV treatment for the CMV. When he found out that he was getting admitted again, he started crying which made Mom cry and then I cried, but I think we've all sucked it up again and are ready to press on. They expect him to be in the hospital for "at least a few days" so their stay in St. Louis will be a bit longer than expected.

I'm sure that everything will be fine but it's just a hard road to even peek down after the past 18 months of trauma, so our reactions are no doubt magnified.

If I've gotten any of this wrong, I'll fix it later, but in the meantime, please pray not only for Job's quick recovery from the CMV, but for his mental well being during his hospital stay (as well as Mom's and Tina's, etc.).

Aunt Tammy

UPDATE: They almost done a liver biopsy today, but could not work out the details. They had originally planned to piggy back on the bronch and use a needle-type procedure. However, some concerns arose using this method and the decision was made that the safer method for Job would be a small incision in the OR. That requires more planning than a few hours so the docs decided to just monitor the liver enzymes from afar and to then decide in a few weeks if a biopsy was necessary. This all happened this morning before the CMV test results came back.

Tina

Tuesday, May 27, 2008 11:54 AM CDT

We are gearing up to head back to St. Louis this weekend. Job has his 6 month evaluation. Can you believe that it has already been 6 months since he received his lung transplant. This six months sure passed faster than the previous six months.

We had a little excitement last week with his blood sugar running high and he was also a little anemic. Ark. Children's hospital wanted to give him a blood transfusion, but Dr. Faro of St. Louis said no.

He is doing great now and his blood sugar has been a lot better the past few days. He is having an MRI of his head tomorrow, which was ordered by Dr. Philips, his ophthalmologist. He wants to know why he is not seeing better.

Well, we are headed to physical therapy right now.

Tina

Wednesday, May 14, 2008 9:35 AM CDT

Job got a "stander" yesterday. Its a loaner from our PT since he will only need it for a few months. The goal is to stand in it twice a day for an hour each time. Last night he made it 25 mins at about an 80 degree angle. It won't take us long to build back up. He hasn't stood like that since we left St. Louis and even then he was only doing 30 minute sessions. There is a NEW PHOTO added of him standing in it.

The PT also got the prescription for his walker approved and will be ordering that soon.

You know, it sure is easy to let the cares of this world consume your day and before you know it there is nothing left for God. I have really been struggling with spending time with God each day. I get so busy doing this and that then I fall into bed at night and haven't even cracked my Bible. God has granted me and my family peace on every side and I need to be just as deteremined to spend time with Him every day as I was while Job was lying in that hospital bed. It is strange how it is almost harder to stay focused on God during seasons of peace. That is sad.

God Bless,
Tina

UPDATE: Job and Rob went fishing today and Job caught this huge fish. They just got home with it.

Monday, May 12, 2008 11:44 PM CDT

HEY ALL. The diarrhea is GONE!!! I was so happy today that I wanted to take a photo of the beautiful bowel produce, but of course didn't LOL. GMA and I were laughing about posting the photo on the internet LOL. I am just so happy that it cleared up, I was getting so frustrated. Thanks for all your prayers.

Job, Nicole, and I went to the movies Sat. and saw Speed Racer. It was a fun movie. Its not a cartoon, but it is cartoonized. We all enjoyed it.

Have a great day.
Tina

Saturday, May 10, 2008 12:02 AM CDT

All test results are negative. I am betting that Beth & Joe Rork are correct in the tought that this is medically induced. The problem is then, how do we resolve the matter. He is better now and having fewer accidents. Since the docs do not want us to give him medicine for the diarrhea then we are trying to combat it the natural way by changing his diet. Lots of grilled cheese sandwiches HA.

His PFT results were great the other day. He is breathing good and that is comforting. We are getting ready to go back to St. Louis for our six month evaluation the first week of June. Can you believe that it has already been six months since his transplant...well as of June 11th. Time flies when you are having fun.

Job road a tricycle around at the gym on Thursday. I wish you all could have seen him. He looked great. He even road outside on the sidwalk a bit. He made the loop all by himself. I didn't have my camera or camcorder with me so I didn't get any shots of it. Next time maybe.

ALSO, we finally got Job to the ophthamologist last Monday. He has his laser YAG scheduled for the 16 to remove that secondary cataract from his left eye. We also got a prescription for glasses for him and should have them ordered in a few days. His vision has continued to improve. He tested 20/100 in his left eye and 20/150 in his right eye. That is better than 20/180 in both eyes. We should be starting occupational therapy soon and one session each week with be working to increase his vision.

Our PT is also working on getting him a walker so hopefully he will be getting that soon.

Hope you all have a great day.

Tina

Wednesday, May 7, 2008 8:48 AM CDT

This diarrhea is never ending. I will think it is getting better, but then here we go again. He has a bad cough this morning also which is new. We still have not got the test results in from last week. We are going to ACH today for PFTs. Hopefully we will find something out. He can hardly do anything because every time he coughs or sneezes he has an accident plus the frequent bathroom visits.

Here is a thought for the day…

"Do nothing out of selfish ambition or vain conceit, but in humanity consider others better than yourselves." Philippians 2:3

Tina

Friday, May 2, 2008 11:38 AM CDT

HAPPY 10th BIRTHDAY JOB!!!

Job's tummy problems seem to be settling down. Yesterday he felt great, but he did wake up with an ear ache today. He is napping now. I am hoping after his nap that he will be feeling better. If his ear is still hurting after his nap then we will have to go to the doctor on his birthday which would be sad.

Nicole won an award at her concert last night. She received an award for "Most Improved Brass" (she plays the trombone). I was very proud of her. Job thought the concert was pretty boring until they played Creepy Crawleies. He liked that song.

Tina

Thursday, May 1, 2008 10:37 AM CDT

I forgot to say...

HAPPY 40th BIRTHDAY ROB!!!!!!!

Thursday, May 1, 2008 6:37 AM CDT

We took Job to the doctor yesterday due to the continued diarrhea. We thought he was over it on Monday, but it started back up Monday night. I had been praying and praying just to get through Tuesday. So, when we got up yesterday and he started the diarrhea again then I called Ellie. We made it to his new pulmonary doctor in Little Rock at ACH and got him checked out. His x-ray was fine and he sounded clear so they didn't admit him. They are running blood work and other tests that we hope to get the results of today. They are testing for C-Diff among other things.

Tina

Tuesday, April 29, 2008 7:39 PM CDT

Today was a great day. The community really came out strong. We love you all so much and thank you all for taking the time out of your day today for the McCully Family.

Job is still struggling with his stomach problems. Please continue to pray for him.

Tina

Sunday, April 27, 2008 11:32 PM CDT

Job has been sick for the past two days. He doesn't have a fever, but he can't keep food down and he has diarrhea terribly bad. I guess I will call Ellie tomorrow. She is our transplant coordinator and ask her what to do. I just pray that we can get through the day on Tuesday okay. It is a big day for our family and I would hate for him to have to be admitted to the hospital for antibiotics and miss this huge day.

He is going for IVIGs tomorrow at ACH. I know that will help boost his immune system to fight off this bug. We are a week late for IVIGs too. That might be what is causing his upset.

Please pray that he will be able to combate this illness and will be feeling well enough to enjoy the day on Tuesday.

Thanks for your prayers.
Tina

Saturday, April 26, 2008 3:02 PM CDT

Job is doing great. He is really enjoying the water therapy and continuing to get stronger. Yesterday we went to his school and visited his class. The principle had the entire elementary school assembled together and they all yelled and cheered when Job came through the door. They had all made signs and were waving them high in the air.

He was all smiles and loved every minute of it. Everyone was asking when he would be returning to class. They all miss him. The school is making arrangements for a tutor during the summer so he will be ready for the 5th grade this fall. They are also working on some visual aids to help him see.

Thanks for all your continued prayers. I wish you all could see him laugh and play. He is a VERY HAPPY boy.

God Bless,
Tina

Thursday, April 24, 2008 8:11 PM CDT

Well... we have to get the word out about the activities without letting anyone know LOL. If the media shows up then they will not be able to do what they want to do.

If you have questions then you can email me at tinamc658@yahoo.com

Tuesday, April 22, 2008 8:18 PM CDT

***New Photos added

Job had a wonderful day at physical therapy today. He stood all by himself in three foot of water. Then he held on to a noodle to help him with his balance and he walked back and forth in the three foot water. Tabatha (his pt) was right there in case he lost his balance. He was SOOO happy. He was smiling from ear to ear the whole time.

Everything else is going fine. Getting a few more phone calls if you know what I mean. That's all so far.

God bless,
Tina

Thursday, April 17, 2008 10:34 PM CDT

HELLO EVERYONE. Sorry its been a while between posts. I have fallen out of my posting routine but I will get back into the swing of things. The internet is finally working good.

...INFORMATION DELETED...if you read this information prior to the deletion, please do not comment on it in the guestbook. Thanks.

On another note, Job finally got approval to begin physical therapy!!! I know I hadn't even told you all that there was a hold up, but you know how paper work goes. They had completed his evaulation, but were waiting on the doctor to approve their treatment plan before they began therapy. He hasn't had PT since we left St. Louis (except for home exercises). That all got taken care of today and he will begin tomorrow at 11:00.

Goodnight. It's sure been a good day.

Tina

Friday, April 11, 2008 8:38 AM CDT

Hi Everyone,

This is Tammy. I finally got to talk to Mom last night and thought I'd post an update. They have a hard time getting a cell signal at the house but I only just found out that Tina transferred their old home number to the new house so if you knew their old number, you know their number at the other house.

Job is doing great. There have been several reasons they haven't posted an update: slow internet, extreme busy-ness with normal life, but the most telling one is, "Job's doing so well that there's really not much to report on." I told Mom that THAT was something to report on, ha. They still can't get an appointment with the eye doctor to check his vision but are working on that. They have physical therapy once a week at the hospital but are doing it every day with their home exercises. He has to go to the clinic once a month for IVIG's. Job is bored, bored, bored, ha. I know he's just itching to be able to get out of that chair and run around. He's LOVING children's church, although getting him upstairs in the church is an ordeal since they have to carry him and his wheelchair separately (in my opinion, children's church should be moved DOWNSTAIRS). He takes about 15 pills in the morning and three liquid medications, has his finger stuck before each meal to see if he needs an insulin shot (one of the medications is causing the diabetes) but has to have a shot twice a day regardless of the finger stick results.

Tina's keeping very busy and has gotten knee deep and neck high in the accounting and bookkeeping for the church but I just know that she's loving the thought of having a task that is challenging and is not life or death.

I'm going to fly down to see them at the end of this month and spend a couple of days so I'm excited about that. I couldn't come to the homecoming, but from the looks of the video, I would have been lost in the shuffle. I can now get my special Aunt Tammy time with Job and Nicole without all the excitement.

That's all I have for now,

Tammy

Monday, March 31, 2008 11:12 PM CDT

We had our first visit to Ark Children's Hosp (ACH) today. It was great to see everyone again. It was strange going back there because the last time we were there was a very dark time in our lives...very dark. I'll never forget that last night in that hospital. I was just begging God to get us through the night and get Job safely to Houston.

"Wednesday, March 28, 2007 11:26 PM CDT

It has been a very difficult day for us all. Job has had a tough time after the incident this afternoon. He just doesn't have the reserve to recovery very quickly from things like that. He has been pretty scared that it would happen again. I believe he is also anxious about the trip tomorrow. We all are. We are just begging God to help us have a peaceful and uneventful night and make it to Houston safely in the morning.

Dear Lord, Please help Job breathe easy. He is working so hard for every breath. He is soaken wet from sweat from the labor of breathing. Please keep his blood pressure down to a safe level. Please help him rest; help us all rest tonight. Please Lord, I beg you, have mercy on us tonight and give us an uneventful night and safe travel. Please have mercy on us...on Job. In Jesus name I plead with you that you help us get through this night. I rebuke satan and all evil in Jesus name and command it to leave him alone. I don't know what else to do Lord, except to plead and beg you to help Job ease up on his labor to breathe. Please help him push the air through his lung. You created his lungs, I know that You can do anything you choose. Please open up his lungs and help him breathe. Please Lord, Please...

In Jesus name I beg...Amen

Tina"

Praise God for His mercy and grace.

All went wonderful today. They were able to draw blood beautifully from his port and then gave him IVIGs (which took four hours). It was a smooth day.

We stopped by PICU to say "hi" to some of our friends over there, but none were working this afternoon. They never got to officially meet Job. He was just too sick back at the time.

We have our physical therapy evaluation tomorrow. Job is ready to get back to his exercises. He is ready to start walking. I pray that his knees and legs grow stronger and stronger.

God Bless you all,
Tina

Saturday, March 29, 2008 9:33 AM CDT

we've got a little buzz around here about ABC's Extreme Makeover - Home Edition. The Conway local paper has posted this ad. They are asking for people to recommend a family by sending an email to castarkansas@gmail.com. Here, I will just post the whole article in case the link doesn't work correctly.

"ABC's Extreme Makeover: Home Edition searches for heroic families in Arkansas

Do you know a hometown hero whose home deserves an Extreme Makeover? If so, the producers of ABC's Extreme Makeover: Home Edition want to hear from you.

Ty Pennington and his crew have been all across the map and now they want to drive that famous bus to the Arkansas Area.

"We are looking for inspirational families that America can really root for," says Casting Director, Quintin Strack.

What does it take to be picked for an Extreme Makeover? Strack says, "we are in search of real heroespeople that have amazing strength and who have put their own needs aside to help someone else." In addition, to heroics, the producers are looking for families whose homes are in dire need of help. "We don't want to tear down a nice looking house. We want to see houses that look like they might fall down on their own!"

To be eligible, a family must own their own single family home and be able to show producers how a makeover will make a huge difference in their lives.

Interested families should e-mail a short description of their family story to at: castarkansas@gmail.com
Nominations must include the names and ages of each member of the household along with a description of the major challenges within the home. Also be sure to explain why this family is deserving, heroic, or a positive role model in their community. If possible, include a recent photo of the family. Don't forget to include a contact phone number.

The deadline for nominations is April 4th. Don't Delay!

For more information on how to apply please visit our website at: http://abc.go.com/primetime/xtremehome/index?pn=apply

Thursday, March 27, 2008 10:55 PM CDT

Wow, I have been about to go crazy without internet service. Our phone still hasn't been transferred so the only way I could get on the internet was at our old house. Anyway, I went to my friends at Alltel and got fixed up with a wireless internet card for my computer.

I hope you enjoy the new photos, also you can go to www.headlightnews.com (Perry County version) and see the local newspaper article about Job's welcome home party. On the internet, the story is on pages 1 and 5.

All is going great. We are getting settled in our temporary home and are really enjoying being together. It worked out great that Nicole was on spring break this week.

CHECK OUT THE HOMECOMING VIDEO. Its only about four minutes long.

Tina

Sunday, March 23, 2008 9:35 PM CDT

Hey everyone. Just a quick note to say we are doing fine and the welcome home parade and party were wonderful. Job was so very happy. He got to ride in a convertable Corvette behind about 60 motocycles, two fire trucks, and police cars. As the lights flashed and the sirens blared, we made our way from Toad Suck to Bigelow. The highway was lined with wonderful friends and family waving and shouting and holding welcome signs.

At the party, Job had a table setup for each major holiday he missed including Christmas, Thanksgiving, 4th of July, Valentine's Day, Easter, and especially his birthday. He went straight for the birthday cake and Christmas presents first. HA. He made both the NBC and ABC local news, but I can't find the clips on their websites to provide a link.

Thanks everyone for all your hard work and effort you put forth for the welcome home event, but especially thank you all for your love for my family.

BOY, this dial-up internet service is SLOW! Guess that is one thing I will miss about the city, HIGH SPEED INTERNET LOL.

Tina

Wednesday, March 19, 2008 10:43 PM CDT

WOW, have we been busy. There is so much to do before we head home. We have been running from one appointment to another, phone calls flying, plus trying to pack in between, to try and get everything done so we can head home Friday.

All of Job's tests have came back wonderful. His surgery went well on Monday, he is just really sore. He will be able to be immersed in water in 4-6 weeks... just in time for summer swimming. He is looking forward to being able to lay down in the bathtub. We also think that water therapy will be easier on his knees. His knees are so fragile. That is the biggest obstacle right know related to him walking.

We had an appointment with neurology today and they agreed that it was time to wean him off Keppra. That is the anti-seizure med that he was placed on back in Sept. Tomorrow we have an eye appointment to test his optic nerve, PFTs, Pulmonary Clinic, and PT+Party. They are having a little going away party for him during PT. After that, I have to pick up the U-Haul trailer and get it loaded so we can head out Friday morning.

I can't believe we are really getting to go home.

Tina

Tuesday, March 18, 2008 5:18 PM CDT

Below is an email from Florence:
Please join us to welcome Job home. We are planning *”Job’s Miracle Miles”* at 10 am Saturday, the 22nd of March. We plan to line both sides of the highway for as far as we can with people who love Job, who want to witness his great healing miracle, and who want to help the family financially by supporting *Job’s Miracle Concert and Family Fun day*!!! To be a part of Job’s Miracle Miles just show up! Bring a welcome home sign and/or balloons and stand on the side of the road cheering and praising as he makes his way past to the Bigelow Assembly of God church for his homecoming celebration/fundraiser!!!

Our hope is that we can at least cover both sides of the road from Junction 113 to the church and from the Perry Co side of Toad Suck bridge for as far as we can. We hope to have fire trucks, motorcycles, horses, etc etc to form a “parade” of sorts too! If you have a Job’s Miracle t –shirt please wear it or a red shirt….if you want to purchase a t-shirt, please call 889-4987 or 759-2642!!! *There is no reason why we can’t show Job how much we love him and have missed him in great numbers! There isn’t anywhere else I would rather be on this day---come out and be a part of this for Job! If you have a large group *church group/cheerleader group/civic club etc etc than plan to come, reply back to this email so we can make sure we get you all together!! THANKS

Please pass the word about this event and Job’s homecoming! I’ve attached a poster to give you all of the details about the day!! There is a lot going on! Bring your whole family! Invite your neighbors….tell everyone at work, at church, in your group about this miracle and this event---help us make this a huge financial success for the McCully’s and a day of great rejoicing for Job!!! Let’s blow this out of the water—SEE YOU THERE!!!!!!!!!!!!!

Florence Rappold
florence.rappold@crossmark.com

Saturday, March 15, 2008 9:37 AM CDT

I just posted some new photos in the photo album. We went to a Mark Schultz concert last night and got to meet him and get his autograph. He is the one who sings "He's My Son". That's the song used on Job's video. Nicole got here Thursday and got to go with us also. We had a good time.

I also added a photo of Job's Broviac so we could all say goodbye! It was wonderful to have, but we are glad to get rid of it. I thought you all might be interested in what it looked like if you didn't already know.

We sure love having Nicole here. I can't believe that we are really getting to go home after so long away. All of Job's test results from his 3 month evaluation have came back great so looks like it is really happening. We had our first "last day" at school on Friday. St. Louis has spring break this next week, but back home spring break is the last week of March. So Job will get two weeks off LOL. We have our last clinic and PT on Thursday the 20th. We plan to transition all his IVIG stuff back to the Oncology clinic at Arkansas Children's Hospital. He will need IVIGs every 3 to 4 weeks. It will be good to be back at our old stomping ground again.

They have planned the Family Fun Day and concert in conjunction with our return on the 22nd. Since they were unable to obtain use of the Perryville fairgrounds for the 22nd, the events are going to be held in the gym of the Bigelow Assembly of God church. I believe the welcome party is scheduled for 10:00 with the concert following at noon. We will be arriving at the Toad Suck bridge at 10 a.m. to meet our escort and drive on in to the church in Bigelow. I can't wait to see you all there. We are going to drive most of the way on the 21st so that Job is not too tired for the party on the 22nd. That will also allow us to time our arrival just right. ONLY 6 DAYS LEFT! OOPS! I BETTER START PACKING!

Tina

Wednesday, March 12, 2008 8:57 AM CDT

I am glad that you all enjoyed the clip of him walking using a walker. His left knee gives him the most trouble. It is very sensitive and the least activity hurts it. This crazy knee is a big stumbling block in our progression on walking.

We had ALL sorts of good news yesterday... his three month anniversary date of transplant. Check this out:

(1) Rob got a job and starts Monday! He thought he had this job a few weeks ago, but there were some problems with paperwork. They got it all worked out and he finially gets to go to work. His first full time job in over a year!

(2) CMV is negative! The results are in from the biopsy of Job's lungs they took during his bronch. The negative we had before was only of his blood work, this one is from his lung tissue. This is a great milestone. We now get to decrease the Ganciclover from twice a day to once per day.

(3) Right eye problem resolved! He had the cataract removed from his right eye last Thurs. However, during the exam on Friday we found a complication that would cause him to require a second surgery. We prayed that God would handle it Himself. At his eye apt. yesterday, the doc said, "WOW, we didn't expect that to happen. The problem in his eye resolved itself!" She said it a few times about like that. PRIASE GOD. His vision is still very poor, but we are thinking that is just the stitches disolving.

(4) BROVIAC REMOVAL AND PORT PLACEMENT on Monday the 17th They called and told us that we had an OR appointment for Monday the 17th to have his broviac removed and a port placed and possibly stoma closure. YIPEE! This is another issue that could have caused us to remain in St. Louis for a little longer than the 21st. We are also happy that we are getting rid of that Broviac (central line). It is a pain in the neck. It also is a good sign of how well he is doing. If they were concerned then they would leave it in longer.

So with all of that said, we should be all set to head home on the weekend of the 22nd. Hopefully we will be released on the 20th, check out of RMH on the 21st, and make it to Bigelow by noon on the 22nd. I plan to drive most of the way on the 21st and save the last hour or so for the 22nd. That way Job is not to tired to party once we get back to Perry County.

Praise God for all the wonderful news. I was excited to share it with you all.

Tina

Wednesday, March 12, 2008 8:57 AM CDT

I am glad that you all enjoyed the clip of him walking using a walker. His left knee gives him the most trouble. It is very sensitive and the least activity hurts it. This crazy knee is a big stumbling block in our progression on walking.

We had ALL sorts of good news yesterday... his three month anniversary date of transplant.
(1) Rob got a job and starts Monday! He thought he had this job a few weeks ago, but there were some problems with paperwork. They got it all worked out and he finially gets to go to work. His first full time job in over a year!

(2) CMV is negative! The results are in from the biopsy of Job's lungs they took during his bronch. The negative we had before was only of his blood work, this one is from his lung tissue. This is a great milestone. We now get to decrease the Ganciclover from twice a day to once per day.

...gotta go... will finish later

Monday, March 10, 2008 11:26 PM CDT

Hey all, sorry for no update in several days. We have been running and running. The fundraisers at St. Louis were great. I cannot give enough thanks to the loving people at West County Assembly of God for all they done for my family this weekend. May God richly bless them for all they done.

The event in Ark at the Perryvile fairgrounds was postponed due to all the snow and bad weather. I will let you know when it is rescheduled.

Below you will find a very short video of Job walking with a walker. I hope you enjoy it. It is very hard work for him and it is hard on his knees. I will try to capture a better clip when I can.

God Bless,
Tina

Thursday, March 6, 2008 12:38 AM CST

Dr. Coste just popped in and said that all went well with the bronch. They were very happy with how his lungs looked. One was a little red but nothing that concerned them. His lungs were also pretty clear and didn't bleed as much as with his previous bronchs. He restated that they were very pleased with what they saw.

Job is still in the OR with the ophthalmologist getting his eye surgery.

UPDATE: Ophthalmolmgist (Dr. Culican) just came in and said the surgery was a great success. She removed the cataract and placed a new lens. She also removed the membrane behind the eye that tends to develop scare tissue after cataract removal. This should greatly increase the odds that he will not have to have a laser YAG later on in his right eye. The reason the left eye is still seeing poorly is because the scare tissue that they intended to remove with the laser YAG last month is still there. It did not fall off like they hoped after the YAG. Later we will have to the laser proceedure on the left eye again. This made me feel better. Not that the previous laser proceedure was unsuccessful, but that it was the scare tissue still causing him problems and not something ELSE. Simple solution... another laser YAG on down the road once he is better.

Tina

Wednesday, March 5, 2008 9:10 PM CST

The bronch/cataract surgery is tomorrow at 8:00. We have completed all of our other tests for the three month evaluation. I haven't heard any results yet and probably won't hear anything until Monday when we go to clinic.

Amy (one of Job's PICU nurses) came over and played with him for a couple of hours today. He loved it. He really had a good time.

Please pray that all the test come out beautifully so that we can go home on by Easter. That is our prayer. I have to admit that I am a little nervous and I'm holding my breath.

Tina

Saturday, March 1, 2008 10:24 PM CST

The news clip has been added to Fox's website. Here's the link Job's Fox Update Hope it works for you. The Video link is in the section called "side bar".

Update: 3/2/08 11:23 pm
I wish you all could have seen Job's face while he watched himself on the news. He was so filled with joy. He is so happy all the time, laughing and joking. He was saying tonight how happy he is that so many people love him.

He was taking a bath tonight and I told him to wash his hinny-bo and he said, "I can't reach it because my arms are too fat" and we both busted out laughing. I told him that those angels were feeding him pretty good while he was sleeping and we laughed again.

All his three month evaluation tests are scheduled for this week. The bronch/cataract surgery is on Thursday which means that he will be wearing an eye patch at the trivia and concert they are having at West County Assembly of God this weekend. But you know, that eye patch will be another sign of victory...or the coming victory as Job is not ready to declare all out victory just yet. He knows God has a lot more of healing and restoration still in store for his little body.

Its now 12:01 and March 3rd which is Rob and my 15th wedding anniversary! HAPPY ANNIVERSARY ROB! I LOVE YOU AND MISS YOU VERY MUCH!!

Tina

Saturday, March 1, 2008 6:41 PM CST

Job will be on Fox news in St. Louis TONIGHT at 9:00!!! Hopefully the story will be posted on their website soon after (www.myfoxstl.com).

Friday, February 29, 2008 11:22 PM CST

The CMV test came back negative YIPEE!!! Doc wants to continue with IV meds until biopsy from 3 month bronch (scheduled for Thurs) comes back negative as well.

Looking to go home the weekend of the 22nd! Please pray that we are able to.

Tina

Wednesday, February 27, 2008 9:48 AM CST

Job is doing great. Papa Bob (Rob's Dad) just left. He had been here for the past two weeks helping out. So its just me and Gma and Job once again.

Job is still not able to stand, but Carol was impressed with the improvements that he is making in his legs. Our goal is for him to be able to walk (at least a few steps) by the time we head home. He will probably need a walker at first.

We are still praying for his CMV text to be negative. We should have the results from Monday's test today or tomorrow. Once this comes back negative, then we can stop the Ganciclovir. This is an IV med that Gma and I are having to administer here at the apt. They are trying to schedule his three month bronch coupled with his cataract surgery the first week of March, which is next week. Once this is scheduled then we should have an idea of when we will get to GO HOME.

God Bless,
Tina

Monday, February 25, 2008 7:36 AM CST

The weekend went GREAT! Our family got to attend church together for the first time in over a year. We are having a great time here with Nicole and Rob, I am sad that they must leave today. Today is also our first time to go to the transplant clinic and to the hospital as outpatients. We have a busy day scheduled with clinic, x-ray, PT, and school but at least we get to come home at night.

He will have PT and school on Monday through Friday and clinic on Mondays and Thursdays only. I don't know how often we will have x-rays. I know everyone's big question now is when can we go HOME. That's my big question also and do not have an answer right now. The last I heard was that it would be the end of March.

God bless everyone for their continued prayers.

Tina

Friday, February 22, 2008 7:13 AM CST

JOB WAS DISCHARGED FEB. 21st, 2008 on his one year anniversary date of admission to the hospital. We are headed out in a few minutes to fetch Nicole and Rob from the airport, but wanted to give everyone the good news.

Tina

Wednesday, February 20, 2008 12:53 AM CST

Job is not getting discharged today, but it should be tomorrow. His meds have been shipped from Dallas today and should arrive tomorrow. The only thing that would keep us here is respiratory problems which he is NOT going to have. He is doing wonderfully respiratory wise.

As a consolation prize, he gets a five hour pass today from 1:00 til 6:00. He is very excited about the pass and said that he will believe he is getting discharged when it happens. LOL

Thanks for all the birthday wishes. This long pass will be a wonderful gift and continue to hope for discharge tomorrow. Thanks also for all the participation in the post card project for Extreme Makeover: Home Edition. Who knows, the Lord may just pull this thing off.

I am having a wonderful 21st birthday (LOL, yal didn't know that I was still just a pup). I just wish Rob and Nicole were here, but they will be here Friday morning bright and early. Nicole loves those early morning flights HA.

OH YEAH, the MRI of Job's knee showed no fracture only inflamation and an area of the bone that doesn't get good blood flow. PRAISE GOD for no fracture. That would have thrown the standing exercises to a screeching halt.

God Bless,
Tina

Tuesday, February 19, 2008 5:21 PM CST

Things are not looking very good for discharge tomorrow. The doc's failed to order Job's meds before today even though we have been planning this discharge for a week now. If we do not have his meds delivered tomorrow, then we will not be able to leave the hospital.

Please pray that is works out somehow and we get to get out of this joint tomorrow.

Thanks,
Tina

Monday, February 18, 2008 8:28 AM CST

I haven't seen an update in a few days so I thought I'd just go ahead and post one. I talked to Mom last night and she said that Job was sitting on the couch playing video games in the apartment. He had a pretty long pass because he had already been there for a bit and she said he didn't have to be back again for about four hours or so. They are "supposed to" get out of the hospital on Wednesday!! Tina's birthday is Wednesday and I'm sure there isn't another present in the world that would make her more happy.

That's all I've got :)
Tammy

UPDATE: I'm sure glad that Tammy is helping me keep yal all updated. The internet at the apt has been on the blink. I have added a photo of Job at the movies to the photo album for you all. The plunge was a huge success. Thanks to everyone who participated. ---Tina

Friday, February 15, 2008 5:27 PM CST

Job had a great day today. He got a pass to go to the movies and see Spiderwick Chronicles. He had a great time and was very excited about getting to go.

Tuesday, February 12, 2008 9:59 PM CST

We got the new CMV levels in today. Although Job still tests positive for CMV, his levels are so low that it is listed as undetectable. This was the level that was 130,000 two weeks ago. THIS IS GREAT NEWS! A MIRACLE! So, we are continuing to go forward and hopefully get some passes soon and perhaps a discharge in the next week or so.

Thanks so much for your prayers. They have made all this possible for this little boy.

Tina

Monday, February 11, 2008 11:38 PM CST

Today was the two month anniversary of Job's lung transplant. He had a wonderful day except for being tired from not getting much sleep the previous night. Nothing was wrong, he was just not sleepy. We are still weaning these sedation meds down, so he is still adjusting to the changes. We reduced the morphine today and it is scheduled to stop on the 25th and the Ativan will stop on the 21st. Just a little while longer on those.

Job has been improving so wonderfully. He has not slept without oxygen for almost a year now and although since his transplant he has had several days in which he has not needed it during the day, he was still needing a little at night. This evening he has been asleep since 9:00 (it almost midnight) and he is sating 99 percent ON ROOM AIR. I believe this will be our first night without oxygen.

Job is doing so well, I am starting to wonder with they will discharge him. We are ready to start having so FUN. I hope we are out by February 21st since that is our one year anniversary in the hospital. I really do not want to hit that year mark.

I am so thankful for all the fundraisers that are happening for our family. There are a lot of people working really hard for our family and I really appreciate it and thank God for you all.


I almost forgot why I started this post. The folks back home have updated the "He's My Son" video for some fundraiser projects that they are working on. It was so fantastic that I wanted to share it with you all. Follow the www.jobs-miracle.com link below and check it out.

UPDATE: YEAH, WE MADE IT ALL NIGHT WITHOUT OXYGEN!!!!!!!!!!!!!!!!!!!!

God bless,
Tina

Monday, February 11, 2008 9:58 AM CST

CHEST TUBES ARE OUT!!!! Praise God!!! Job had a school project that we completed yesterday in which he had to prepare an envelope and write three wishes and seal them inside. Since we don't do wishes, I just told him to write three prayers or "wishes" to God. Here is what he wrote: "Dear Lord, I want to get out of the hospital. I want to get my chest tubes out soon. I want my eyes fixed." One down, two to go.

He had a wonderful, wonderful day yesterday. We have witnessed yet another miracle happen in Job's physical body over this past week. The enemy is mad as fire but he has already been defeated 2000 years ago.

(2 Cor 4:8)
We are hard pressed on every side, but not crushed;
Perplexed, but not in despair;
Persecuted, but not abandoned;
Struck down, but not destroyed.

(Phil 1:18-19)
...Yes, and I will continue to rejoice, for I know that through your prayers and the help given by the Spirit of Jesus Christ, what has happened to me will turn out for my deliverance.

Tina

Friday, February 8, 2008 7:02 PM CST

NEW PHOTOS

I posted some new photos in the guestbook. Job is doing great. He had a good day and is continuing to recover from all he has been through. He had an eye exam today. He tested at 20/160 in his left eye and only had the recognition of light in his right eye. We are praying that God will heal his vision just as He has done for his lungs.

He has spent most of the day on room air only. He has been feeling great and eating really good also. Another thing we are praying for is that he recover from the medicine enduced diabedies that he has developed. He gets five or more shots per day of insulin and about that many finger pokes also.

Job has just been doing wonderful. PRAISE GOD.

Tina

Thursday, February 7, 2008 4:42 PM CST

PRAISE GOD for answered prayers. God is so good! He sure keeps these doctors scratching their heads LOL. Jobs test came back saying that he DOES NOT have a resistance to Ganciclovir (orig CMV med) and therefor they are stopping the Foscarnet (CMV med started last week). The Foscarnet is what is causing all these other problems.

Job is only on 1/2 a liter of oxygen right now and he is sound asleep. He has even spent some time on room air today. His ice cream stand was a huge success today. I think he made over $40 and he wants to open back up during night shift LOL.

PRAISE THE LORD for the wonderful improvement that we have seem over the past few days. We get to run the halls here in a bit once this one medicine finishes. The nurse said she would unhook Job from the IV pole and we would be free to roam about. We have been confined to the room for about a week now due to all the drama going on.

Thank you for all your wonderful prayers. I want to also ask the Lord to please meet the needs of all those people who were affected by the tornados. Please Lord provide and comfort all those people. In Jesus name I ask. AMEN

Tina

Wednesday, February 6, 2008 10:23 PM CST

The day went well. He is down to 3 liters of oxygen and is doing well. He still needs some blood IMO, but they are still holding off on a transfusion. His hemoglobin was down to 6.9 this morning.

He did get a haircut this afternoon. HE LOOKS GREAT! He is happy to get that shag cut off. I will post a photo tomorrow evening.

Everything seems to be calming down and I believe we will be staying right where we are and will not be transferring to PICU. PRAISE GOD. We love the staff over there, but we would rather just stop by for visits, HA.

Tina

Wednesday, February 6, 2008 8:53 AM CST

Ok, here's the scoop. I am sitting in the OR waiting room right now. The CT scan yesterday showed that Job had plural effusions on both sides of his chest and therefore is have chest tubes placed on both sides this morning. Their is still a discussion regarding whether or not to give him blood. His hemoglobin was down to 7.0 yesterday. I wish they would give him blood, but I know they have valid reasons for wanting to hold off.

Job needed 7 liters of oxygen last night and would still desat every time he got in a deep sleep. Getting this fluid off should help him a bunch. Some good news yesterday was that the CMV level in his blood was down to 14,000. That means there were 14k copies of the CMV bug in his blood, down from 130,000 and 43,000 respectively. So this medicine is working, it is just kicking his butt in the process. Since that is the case, they have cut the old medicine in half to lighten the load of his body and especially his kidneys.

Yes, we are still playing on the edge of being sent back to PICU, but just praying that it doesn't happen. My hope and prayer are that he continue to get better and be discharged at the end of Feb.

God Bless,
Tina

Tuesday, February 5, 2008 8:54 AM CST

Job made it through the night okay. Grandma just stayed awake and whenever his oxygen would drop below 90 percent, then she would just rub his leg and that would help bring it back up. She said that although it would drop occasionally, it didn't ever go into the 70s or anything. The lowest she saw was 83 percent. He is still on 5 liters of oxygen however. Dr. Faro said that Job sounded better this morning than he did yesterday and that he sounded good yesterday.

Job has a good attitude and has been playing his video games and goofing around a bit. He did stand on the tilt table at an 80 degree angle yesterday for 30 mins. He was very proud of that. He is suppose to have an ice cream stand today with Becki.

Thanks so much for your continued prayers.
Tina

Monday, February 4, 2008 8:24 PM CST

Job is at risk of being transferred back to PICU. He is still in need of a lot of oxygen. He is on 5 liters and sating 92 percent. If he has more problems tonight, then they will transfer him to PICU and place him on ByPAP. His hemoglobin is very low at 7.3. When he was being seen at the hem/onc clinic at ACH, they would give him a blood transfusion whenever he fell below 8.0.

Please pray that Job just gets better. Please dear Lord, I know that You will get us through this, just give us the strength to endure.

Tina

Monday, February 4, 2008 8:05 AM CST

Please everyone pray. Job had a tough weekend, and has continued to be more and more dependant on oxygen. He needed 6 liters last night just to keep his sats above 90. The nurse didn't call the doctors about it and so they are all just finding out as they come in this morning.

He had a chest x-ray about 30 minutes ago but we haven't got results yet. He is also really swollen from all the fluids they were giving him during the night. That is the doctors first guess, that the extra fluid is causing the breathing problems.

This is serious business. PLEASE PRAY.

UPDATE: The x-ray show Job's lungs to be really "wet" again pointing to just too much fluid on his body. The doc says that he sounds good.

Thanks,
Tina

Saturday, February 2, 2008 8:18 PM CST

The CMV level in Job's blood was down to 43k today. It had got as high as 130k at one point. The docs are happy, but said to not get too emotional about that decrease until we get a few more days of decrease under our belts and have a true trend downward. It does appear that he is responding well to the treatment. His kidneys are doing fine, but he is having some trouble with his electrolites. I don't understand all that, but they said it was expected and they are treating him accordingly.

Thanks for your continued prayers.

Tina

Friday, February 1, 2008 11:56 PM CST

Oh, just thought I would share something. Job and Grandma were talking the other day about what he could remember during some of those darkest times and Job said that he does remember standing on a cloud.

I thought that was cool.

Tina

Friday, February 1, 2008 11:56 PM CST

Oh, just thought I would share something. Job and Grandma were talking the other day about what he could remember during some of those darkest times and Job said that he does remember standing on a cloud.

I thought that was cool.

Tina

Friday, February 1, 2008 3:21 PM CST

All is going fine so far with this new medicine. They have placed him on three different meds to help his body fight the CMV (Ganciclovir, Foscarnet, & Cytogam). The infectious disease doc just came in and talked with us. He said Job's CMV level was down slightly today and hopefully that is the beginning of a new trend.

Job has been standing on the tilt table at a 70 degree angle for thirty minute segments usually twice a day. As his endurance and strength increase then so will the time and angle. His wheelchair arrived today and is a much better fit for him that the one he was using, however it doesn't have an attachment for an oxygen tank so we can't us it until they bring us the attachment.

Just to let you if you haven't figured out already, Job will not be getting out of the hospital any time soon. It will be more like the end of Feb now. Yes, we are all disappointed too.

Tina

Wednesday, January 30, 2008 7:17 PM CST

(NEW PHOTOS - these were taken with my phone, so please excuse the quality)

ok, so another issue to call to the attention of our prayer warriors. The results of the bronch show CMV in Job's lungs which is not good at all. Let me tell you the whole scoop regarding the CMV...

Either Job or his donor tested positive for CMV at the time of transplant. CMV is a VERY dangerous infection and therefore Job was placed on treatment immediately. The plan was to treat him for three months and this discontinue the treatment. All was going well until recently. Dr. Coste stated that Job's blood showed an increase in CMV before and they adjusted the medicine and his body responded and the CMV decreased, but it has started to increase again and today took a jump. Their thought is that he has developed a resistance to the medicine that he is currently receiving. Tonight they are going to start another medicine. The new medicine is very strong and is very hard on the kidneys and he will continue to receive the old medicine as well. If they are able to confirm that he is resistant to the old medicine then it will be stopped, but it will take almost two weeks to prove that.

We absolutely have to get this CMV infection and on top of that, we have to pray that Job kidneys will handle this treatment with flying colors. It will take 3 to 4 days before we will be able to see the effects of the new medicine. They are tracking his oxygen dependancy right now as this will be the first indication that he is getting better.

This is serious stuff and we are in much need of prayer. Job is disappointed that he is not getting out of the hospital right now, but he understands also. We will continue to have fun in the hospital for now.

Its been a while since I have shared a scripture with you, but I have one that I read last night that I want to post. Now, you may not believe me, but I read this last night before I went to sleep and intended to post it today before I knew anything about problems with CMV. Last night I went to sleep in the apt thinking we were being discharged on Thurs. and that it would be the last time I had to be at the apt all alone. I had no idea or worry that anything so serious would occur today. You will be beside yourself after reading this.

2 Cor. 1:8-11
We do not want you to be uninformed, brothers, about the hardships we suffered in the province of SLCH* We were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us, as you help by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many.

God Bless,
Tina

*changed from Asia to SLCH for personalization

Wednesday, January 30, 2008 3:44 PM CST

We are not being discharged tomorrow. We are going to shoot for Monday, but it depends on several things. Job's CMV level is elevated and therefore the staff just feels more comfortable waiting until Monday watching these levels and treating accordingly especially with the winter storm coming in. Also, they would like his oxygen requirement to come down more. Since the Bronch yesterday, he is using about twice as much oxygen as he was before it. That is understandable, but still would like it come down some.

Job is doing good and is working hard on standing. He stood for 25 minutes on a tilt table. we have been playing a lot of Monoply. He likes the electronic version that Andrea Rappold gave me for Christmas. It was one of her very own Christmas presents that she gave to me because she knew I was wanting one so bad. I thought it was the kindest thing I have ever seen.

Still no results from the bronch yesterday. I will let you know as soon as I find something out.

Tina

Tuesday, January 29, 2008 12:55 AM CST

Job has been doing fine. He did get the laser YAG done in his left eye yesterday. Everything went well and hopefully he will be seeing better soon. He has an appointment next Tuesday to re-evaluate his vision. He will probably still need glasses, but that will be fine of course.

He is getting ready for his bronch by taking a quick nap. If the biopsy and cultures of his bronch come back negative for rejection and infection, then we may be getting discharged on Thursday. If there is something going on, then of course our discharge date would be pushed back until another time.

The thought is that his bad spell Saturday night was due to withdrawals, but it is just hard to be sure. He had ALL the symptoms except diarrhea. So we will probably go back to our other weaning schedule targeting the end of Feb as the end of his sedation meds (ativan and morphine).

God Bless,
Tina

Sunday, January 27, 2008 10:48 AM CST

Job had a great day yesterday AND got a four hour pass. He went to the apt and played video games, looked through some of his toys, and played with his money again. He wanted to bring it to the hospital with him and couldn't wait to go visit PICU and show all his friends his money from his hot dog, lemonade, and brownie sales as well as birthday and Christmas money that people had sent him.

Around 10 o'clock last night though he began a rough spell that lasted until around 4:30 with only about a two hour break in the middle. He was crying saying his chest was burning, he had a low grade fever, he was itching and nervious and anxious. I think it was withdrawals. However, just to be safe, they ran a nasal swab to test for viruses and a chest x-ray. The doc just came in and said that there is something showing on the x-ray and he is not sure if it is something or not. The chest x-ray will be repeated in the morning and maybe moving the bronch up a day. Right now he has his laser treatment for his left eye scheduled for 1:40 on Monday and a bronch on Tuesday. If they move the bronch up a day, then that will postpone the eye laser until it can be rescheduled. Which I hate, but of course his lungs are priority.

He is very, very tired today from not getting very much sleep last night. He slept well from 4:30 until 8:30, but I had to wake him for breakfast and meds.

He still is on a little oxygen and has occasions when he is only on room air. Hopefully whatever this is in his chest will clear and he will be breathing better than ever.

Tina

Wednesday, January 23, 2008 9:22 AM CST

Blockbuster Pictures added

CHILI SUPPER FUNDRAISER AT Bigelow Assembly of God on SATURDAY, JAN. 26th 5:00 to 8:00 p.m.

Job's trip to Blockbuster was a huge success. Mom said he rented the new Spyro the Dragon game and some movies and had a fantastic time. It wore him out but he went the entire time without ANYTHING connected to him. No oxygen, tubes, cords, etc.

Rob just told me that Job gets another pass tomorrow but even better than that, if things go well, Dr. Sweet said he could be getting out of the hospital sometime next week!!! Isn't that amazing?!

Aunt Tammy

Tuesday, January 22, 2008 2:57 PM CST

I can't update that other journal any further or ya'll will get completely confused.

SO!!! Mom called and Job has a one hour pass and was on his way to Blockbuster!! Two of the nurses went with them. He was supposed to just have a dry run but he said he wanted to go to Blockbuster so they caved. Who can resist him now? LOL Mom said that he was just bouncing with excitement. This is the first time that he's been out of the hospital in 336 days!

Tammy

Tuesday, January 22, 2008 7:36 AM CST

Yeah, me again!: I asked Tina if there was anything she wanted to add and her answer follows:
Tina McCully: we are working on a pass for a few hours. may do a dry run today... then go for it on Thurs
...dry run = testing getting him into car
Me: I just thought I'd go ahead and jump in and post something since I knew people were wondering.
Tina McCully: i know... hate that we haven't done a very good job on that the past week.
Me: Yeah, I was getting antsy and I talk to you guys all the time!
Tina McCully: he is back on 1 liter of oxygen. He was on room air for most of sat and sun actually all of sunday...until he went to sleep that night
Me: Ok, so trach's out, 1 liter of oxygen (canula?), no signs of rejection, white count?, talking??, mood?, swelling?,
Tina McCully: right
Me: ok, I'll put that out there.
Tina McCully: he has been watching movies
Tina McCully: idk about white count
Tina McCully: swelling is down
Me: That's great!

Plus, I got to talk to him on the phone!! Of course I started crying but had the sense to wait until I was talking to Mom again. I hadn't heard his voice for almost a year and the fact that it sounded the same was just amazing.

Update: I forgot to tell you the most exciting news! When I talked to Mom Sunday, she said that she and Tina were out buying Job some clothes that he could wear when he gets his two hour pass and can leave the hospital!

Okay, I'm not really the one to be posting an update because I'm not there but I wanted to let everyone know that Mom, Tina and Rob are all just fine but they are "internet-less" at the apartment and they are so busy at the hospital that there is just not enough time to post an update there (I think they may try to get one posted today because I told them that they were WAY overdue!)

Job is doing absolutely fantastic and is going days without being on oxygen at all (I think it's an on again off again setting on the oxygen). He's making jokes and playing with Nicole (well, she had to go back to school yesterday but you get the idea). The nurse told Tina that she could take Job for a walk around the halls and she thought, "BY MYSELF??!!!" No respiratory, nurse, doctor, etc., just Mom and son tooling around in a wheelchair.

They'll have more news later, but I knew that everyone had followed so closely during the horrific times and now that there are some really great times, the news is just as critical because we all need some Job in our lives.

Aunt Tammy

Wednesday, January 16, 2008 8:51 AM CST

PRAISE THE LORD for the wonderful miracle that is happening to Job right before our eyes. He is getting stronger and stronger every day. His morphine is down to 2.5mg every 6 hours and Ativan is 1mg every 4 hours. His hemoglobin is normal at 9.9, WBC is 17k(down from 25k) and CO2 is 49. The last Adenoivirus test came back negative. Dr. Huddleston wants one more negative test before stopping the treatment. That medicine is one that will keep him in the hospital.

Job got his trach out on Monday, the 14th and today had a wonderful night last night. No desatting on 2.5 liters of oxygen through a nasal canula. He also stood (with asst.) for three, two minute rounds for a total of SIX minutes. He was working really hard and is determined to walk again.

THOUGHT FOR THE DAY: Here is a footnote in my NIV Study Bible (page 1441) regarding Jesus' temptation after his baptism, "Although Jesus was the Son of God, he defeated Satan by using a weapon that everyone has at his or her disposal; the sword of the Spirit, which is the word of God (Eph 6:17). He met all three temptations with Scriptural truth from Deuteronomy (Matt 4:4,7,10)"

I really believe with all my heart that standing on scripture is what got us through this storm as well. When nothing else was reliable, the Bible and God were there. I pray to the Lord that I will continue to seek Him just as passionately during the season of peace as I did through the throws of battle. May you all do the same.

I heard a sermon the other night on TV that said most Christians pray less than 5 minutes per day. That is sad, but VERY believable. He was challenging everyone to commit to praying 15 minutes EVERY day in one consistent, time block. Not two minutes here and one minute there...that is good to. We should always have a mind of prayer and pray constantly, but IN ADDITION to our scattered prayers, pray for 15 solid minutes each day. I am determined to do this and I hope you all with take on the challenge as well. I can sure waste 15 minutes in front of the TV without batting an eye and afterall...if you aren't praying for your loved ones...who is?

God Bless,
Tina

Monday, January 14, 2008 8:26 AM CST

UPDATE:
Job's trach has been removed

Job has been doing awesome!!! Just got word that today may be the day that the trach comes out. Another milestone in this adventure full of miracles. Will post confirmation as soon as it happens.

Rob

Saturday, January 12, 2008 11:42 PM CST

Today Job had a Passy Muir Valve put on his trach. It allows him to talk without having to put his finger over the hole in his trach. He is on nose canula oxygen only. They started him out on 1 liter of oxygen, but when he fell asleep he kept desating. So they turned it up to 2 liters of oxygen. He is holding from 94 – 97.
Everybody is very happy to here his voice after not hearing it for almost a year.

I also understand that he stood while in gym with his Dad, Papa Bob and PT. I don’t know how long he stood or with how much help. I tried to find out but couldn’t reach anyone.

He has been running a low grade fever for a few days. His WBC was up to 25. Today it is down to 20 so it is going in the right direction. They have several cultures going. We will probably have to wait until Monday to find out anything.

For Christmas he got some moon sand and Kim an RT bought him some also. He has been playing with that today and tonight. He played with the moon sand for a couple of hours. I had the web-cam set right on him and his Mama, Flo & Sarah couldn't get anything done tonight for watching Job play in the sand. He got some PlayDoh for Christmas and Becki from Child life gave him some also. He loves playing with playdoh and moon sand. It is so wonderful to see him get interested in doing something again.

Because of his not being able to see all that well he hasn’t been playing video games. He is almost blind in his right eye & can’t see very good out of the other one. They are supposed to get the eye Dr. in here to check his eyes. Hopefully they will get the one eye that has the Intraocular Lens in it lasered so he will be able to see some sights when we get out of here. Hopefully they will get the other one fixed also.

We sure appreciate all of your love and prayers. This journey has taught me how wonderful people can be. You all are awesome. God makes good stuff doesn’t He.

For all you people close to Bigelow Assembly of God, Job is going to be on the big screen in the morning and you will be able to hear his voice. I sure hope he will talk for you. He isn’t a big talker, but maybe he won’t clam up.

Love to all and God Blessings be all over and around you.
Grandma

Thursday, January 10, 2008 10:23 AM CST

JOB CAN TALK!!!

UPDATE: Biopsy Shows NO REJECTION

Turns out that the Lord took care of the pneumothorax (hole in his lung) and it is not an issue. Docs said after his morning x-ray that they were mistaken and he doesn't have a pneumo afterall. So they downsized Job's trach from a 6.0 to a 4.5 and now HE CAN TALK. Rob had him call me on the phone and I just cried and cried. I haven't heard his little voice in so, so long.

Dr. Huddleston said he will probably leave the trach in for another week then take it OUT! YIPEE. That is a great milestone that we are all looking forward to.

Praise God for his continued miracles for Job.

Tina

Wednesday, January 9, 2008 8:51 PM CST

Well today Job had his bronc and they punched a hole in his lung. They say it is pretty common and everything will be fine. It is just hard to hear he will have to have a chest tube for something the Dr. did. Because of that they didn’t downgrade his trach from a 6 to 4.5. Maybe soon though.

Job is doing so well his little personality is showing up more and more. He set up and played with PlayDoh for a long time last night and then got up this morning wanting to play with it again. He is getting more interested in doing things again.

Job’s Pawpaw Bob (Rob’s Dad) came down to see him, which made Job happy.

I know this isn’t very informative, but I’m tired, and can’t really think, but wanted to give you something.

Thank you for continuing to pray for this little boy and his family. May they all be together very soon.

God Bless you greatly. Thank you Lord for all you have done and are doing in our lives.

Glenda Osborne aka Grandma

Monday, January 7, 2008 6:39 PM CST

All is well here. I asked Job if there was anything he wanted to say in this entry and he says to tell about the plug that he had in his trach. A couple of hours ago I was suctioning Job and both of us could tell immediately that something wasn't right. After a mild panic on my part, I was screaming for help, I managed to summon a couple of nurses to help in extracting a huge plug of mucus from Job's trach. Job remained very calm while I was well not so calm. Job thought it funny, me... not so much. Anyway we remained to be covered by the hand of God and Job is progessing well. The hospital newspaper is doing another piece on Job, it seems that Job is very popular here. Becky, the Child Life services gal, says that FoxStLouis will also be featuring Job in another story soon. Tomorrows activities include our first visit to the physical therapy gym, where we hear we get to do more than physical therapy. Job is looking forward to checking it out. Wednesday we are scheduled for our next bronchoscopy, where they will run a scope into Job's lungs and see how things look there. We are expecting to see no signs of rejection and nothing but healthy lung tissue. We are missing Tina and Nicole bunches, and looking forward to being all together again soon. Once again thank you, thank you, thank you for the prayers that cover Job and the love that comes from the body of Christ. We were visited today by some of our family from West County AofG and enjoyed it very much. That's all for now. Posting again soon.

Rob

Saturday, January 5, 2008 7:43 PM CST

Hallelujah!!! We've made it out of PICU! We are now in the Progressive Care Unit room #7. It's been a long time comin'. Job and the rest of us are going to miss all of the staff that have taken such good care of us in the PICU unit. They have been like all of you, so awesome to us. Job is doing so well. We have been able to go on some wheelchair adventures since coming to "the floor". Job has been on visits back to the PICU unit, to the 2nd floor lobby (where there is a bridge to another building) that has two train tracks suspended over the walkway, and where he can really see outside all of the hustle and bustle we all experience daily. He has really enjoyed himself. We've also been to the giftshop where Job was able to pick himself out some Starburst as well as a look out of the garden doors into the 8th floor garden. Docs say it's very important for Job to be up and around. It seems that the more Job is up (in this early stage), his lungs have a better ability to later have greater lung capacity. So its up and adam as much as we can. Everything has been going so smoothly, it seems those months of waiting were now all just a dream. We so look forward to seeing Job running with his friends soon.
Tina and Nicole have left today to return back to Arkansas. Nicole needs to get back to school, she has alot of catching up to do and it will do Tina good to get a break from the hospital for a season. So it's Gma and me holding down things here in ST. Louie while Job continues to improve. Thank you very much for the prayers and support that continue to bless us. More posts coming!
Rob

Thursday, January 3, 2008 8:12 AM CST

Hello all. Job had a wonderful day yesterday. Mrs. Starks and Mrs. Gottsponer along with Trey and Carly were here for a visit. Job really enjoyed their company and so did Nicole and I.

Job is suppose to get his stitches out today and hopefully his other chest tube as well. There is also a lot of talk about transferring us out of PICU and into a regular room... like tomorrow or Monday. Hopefully it will be tomorrow since I am going home with Nicole for two weeks on Sat.

I posted a couple of new photos out in the album if you want to check them out.

Tina

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