History

Sunday, October 8, 2006 9:04 PM CDT

Hello Everyone!

Sorry for such a long update and leaving you all hanging on how things are going since the hosptial trip. We are home and things are going really well we think. He seems to be clearing up from the RSV and other infections he had. Things have been really busy with him going to the doctor and school. He is going to preschool at Divine Street in Dunn. It is for 3 hours 2 days a week. He loves it so far. He enjoys watching the other kids run around. They do so many cute things with them. He just got his powerchair last thursday and all I can say is it is nothing but GOD's answered prayers to see him drive it around. He is so amazing. God has truly blessed him so much. Even though it hasn't been easy it is amazing to see how God has and is working in his life. Hopefully he will be able to stay in school. If he starts having alot of infections we will have to pull him out. He is really talking alot more and saying everything. I don't think I talked about our last trip to Disney. He had a ball. I really think he enjoyed it more this time because he knew what to expect. He love riding Dumbo. We didn't put him on it during the Make a wish trip but did this time. We went to Mickey Halloween Party which was Awesome. He had the best time there ever. They put on a huge party. The fireworks were great. He dance and sang his heart out until 12 am. YES 12 am. We stayed til the park closed. He didn't won't to leave then. Someone took my camcorder. I still haven't gotten over losing the memories. I could careless about the camera but the cd is something I can't replace. Emily is going up so fast too. She is busy and bossing us all around. She is so funny. She loves to kiss Ethan and be alittle nurse. She want to wipe his nose and try to listen to his heart with the toys doctor kit. He really lets he do whatever she wants. Andrew is busy with all the school work, scouts and just being my big boy. He is growing up to fast. I can't believe he is already in the 4th grade. He will be having surgery on Nov 20 to have his tonsil removed. I hope and pray we can make it til then. He is having alot of problems with it. We will try to do it on thanksgiving break. Emily needs hers out but they feel she is still to little to try to remove them. They told us children under 2 don't do well with it. Well keep up the prayers and we love you all!

Monday, August 28, 2006 3:51 PM CDT

Hello Everyone!

Sorry for such a long time since the update. Our computer is like a woman with a mind of its own. Anyway first of all let me start by saying Thanks, Thanks we give you Thanks GOD for all you have done!!! The lower left lung is up!! Praise the LORD! It is so amazing to watch the Lord work in Ethan's life. We had lots of appointments this week at UNC. We saw the Rehab Doctors and his powerchair is on order hopefully we will get it in the next 4 weeks. He is so cute in it and moving all around the house, yard and really anywhere he wants to go. It gives him so much freedom to come and go around the house as he wants. He will be going to Preschool starting on Tuesday for 3 hours a day 2 days a week. We are excited but alittle nervous also. Hopefully things will go well so he can stay involved in the program. We took him on friday to meet the teachers but of course he wouldn't do anything for us. He really has a 3 year old mind. I love watching him and all the new things he does everyday. His newest thing is wanting to tickle you. He is so sweet when he does this. He says tickle tickle tickle. We are leaving Friday Sept 8 to go to Disney World again. We are all so excited. Ronnie's parents and sister are going with us this time. He did so well the trip with Make a wish that we decided to take him back since they where having such a special on this trip. Andrew thinks it is really cool being able to go again and be out of school since he willonly be in for 10 days. I would like for each of you to add to your prayer request a family at my church. There names are Chris and Gator Blevins. They had to deliver their baby a few weeks early because Chris has been diagnosed with Cancer. She will be starting Chemo this week and they are waiting on test results to see how far it has spread. They have several other children but my heart breaks for them. Thanks for the prayers. I will try to keep you posted when I update. I will try to update soon and let you all know how school is going and how the trip went. Love you all!!

Tuesday, June 27, 2006 1:34 PM CDT

Hello Everyone!

Hope this finds everyone well and having a great summer. Trying to stay cool and lately dry. Things have been alittle busy around our house since the last update. School is out for Andrew. Our family vacation to the mountains had to be changed alittle. My uncle passed away and I wasn't able to go. So Ronnie and I decided the older two kids really needed the sometime with their Dad. They went up to NC mountains to visit the Biltmore House and Cheroke. Things really haven't change alot with Ethan. The lower left lung is still down. We aren't suppose to go to UNC until July 19. I called today to see if we could move it up. He is started to have some bad looking secreations come out of his trach. Took look at him he doesn't look like anything is wrong.His new custom trach came and has been in for a week. We are praying this is going to help the lung inflate. It is so amazing to look at him and how far he has come. God has truly given Ronnie and I the biggest blessing by allowing us to take care of Ethan. He really has taught us alot. The most important things of life some many times get left behind until it is to late. We had to realize early on we may only have Ethan for a short time and we have to enjoy everyday with him. I truly encourage each of you don't get caught up in the everyday things and let your time with your kids pass away. I have come in contact with so many parents of kids with special needs and I have two very close friends with children that God has given us to take care of. I can't say it is easy and that we don't get mad, angry or even question God of why but I truly know God has a reason for everyting. I just pray God continues to give me the grace, peace and comfort to get through everything. Thanks for all you love and support. Continue to pray for Ethan and our family.

Love always,
Christy

Thursday, May 25, 2006 9:07 PM CDT

Hello Everyone!

Well where do I begin. We had clinic today at UNC. We went knowing the lung was down still. He is still growing pseumodis but he always does. He is also growing kleibsla. That is something we have never had or have I every heard of. Poor Ethan I believe he makes them up. HAHA. Anyway this makes 3 months today exactly that the lower left went down and hasn't come up. We have been asking for quite sometime how long do we wait. We can't keep him on IV's or antiobotics all the time because of the fear that they all stop working. Our last admisson the doctor were going back and forth that we should take the lower lung out. Our main Pulmonary Doctor said NO. That would be a major major surgery for Ethan and she wasn't sure if he was strong enough. Well today that is what our options were. Ronnie, I and Dr. Chiodo aren't ready for that yet. First, my prayer is our Heavenly Father will heal that lung once again. If not then I don't feel they have down all the things to give me peace about it. We have to call Major Children's hosptial to get options. We don't have alot to go on because there aren't many kids that have gone from Birth to where Ethan is. God has truly blessed him. The two kids I know that are 7 and 8 aren't as active I would say as Ethan. We have been emailing their parents and talking to them. Hopefully we will talk to their doctors in the next week to get their option. Is so hard to be put in this spot. I have said before and once again I don't like feeling like we are playing God with Ethan's life. If we do the surgery will he be as healthy as he is now or will he be worse? Will he lose more of his muscle tone? Will they have to take over all his breathing? Will he know us anymore? I am very overwhelmed. I stop and think of Mary so many times when I am faced with such hard things and think how did she do it. God Truly knew she was the one to be the Lord Jesus Mother. She had to be the strongest woman on Earth because she watched him go through and still made it. I truly don't know what the next months hold for us at this point. Ronnie and I will have alot of things to decided. I just ask you all to pray, pray and pray that God's will be done. Ethan is truly a blessing to our family. I can't begin to imagine my life without that beautiful little face. He is so funny his new saying for some reason is Are you okay. Tonight we went to Andrew's ballgame and took him. The ball came over the fence and almost hit Ronnie's head. He looked over with those beautiful eyes and said "Dad are you okay." He is so sweet and I know without a doubt he is GOD's Gift to our Family. So many people's life has been touched by him. I will try to keep you posted on things more. Thanks for all the ones who email. I would love for everyone who checks the site to email. If nothing but your name. It truly encourage Ronnie and I. Also please pray for Andrew and Ashelyn so many times people don't think of how much it effects the other children but it does more than they get credit for. Thanks for all you prayers and support. We love you all!

Love in Christ!
Christy

Wednesday, May 17, 2006 5:02 PM CDT

Hello Everyone!!

Sorry it has taken me so long to update. Our family is still on a cloud. Things were so wonderful in Florida. Ethan's wish truly came true. To the North Carolina Eastern Make a Wish thanks isn't enough. To the Florida Give kids the World the same is true. You guys really went out of your way for our family. We will never forget each of you and the memories that we were able to make. Ethan truly had the time of his life. We left home on Sunday Morning to go to RDU. Our flight left at 10:40AM. Quess what believe it or not our whole was truly on time 2 hr ahead of schedule. That alone is scary. We left and landed in GA for a layover. We landed in Orlando at 2:30pm. At the end of the gate way a sign saying Welcome Ethan Myers to Give Kids the World. The lady help us get our luggage a took us the our rental van and the nurses to their car. We arrive at the village around 4:30. Once we walked in all the staff and volenteers greeted us and gave Ethan his first Mickey Mouse. Everyone else got Shamu. They took us to our villa. I can't begin to explain how this place is. I told Dr. Chiodo and Dr. Henry it is alittle Heaven on Earth for our kids. They have truly gone out for the kids. It villa is a duplex they has two bedrooms, two baths with handicap and whirlpool for the child, a kitchen, den and laundry room. They had a welcome basket on the table for you with snacks and presents for the kids. The refig had items in for us already. Before we every settled in we ordered pizza which they make and deliver in the park. It was wonderful. After we got Ethan equipment settled in. We went out and looked around. They village is like a little Disney World in itself. They have so much for the kids to do. Everything is handicap equiped. They have a train that comes around you villa to ride on with a wheelchair ramp. The merry go round has a wheelchair snail and turtle. Ethan truly loved riding the merry go round. The lunch room is known as the gingerbread house. Every table in there is child size the tables were make with peppermints inside. There 28,000 in the whole place on top of the tables. They have a ice cream polar opened from 7:30am to 9:30pm. Everything in GKTW is free. You eat as much as you want, when you want. They have a movie theather and a game room, putt putt golf course. There are 96 homes(duplex) right now. They are constructing 3 more. The goal is to have 100 villas for families to visit. It was built in 1986 by a man named Henry Lindwirth. Since that time 75,000 families from all over the world have visited the village. You are able to come and stay once in a life time but Ethan may go back and visit anytime we are down in Florida. We went to Magic Kingdom on Monday. His favorite thing was It's a small world. He loved it. He kept saying Mommy, Daddy look. It was so wonderful to see his little eyes lite up with joy. His new saying is let's go, let's go. Epcot he got to talk to crush from finding Nemo. He loved that. Crush talk him how to say Dude. MGM he only went to see Fantasmic which is the night show. He loved watching Mickey fight off the wicked witch and loved the fire works. Animal he loved the safari ride. Everytime she would hit hole in the rode he would say uh oh and laugh. He got to see Barney, BJ and Baby Bop live. That was cool. We spent our last day at seaworld. He did okay there. There isn't alot for him to do but he loved looking around at everthing. We were able to meant alot of wonderful people who truly know what it is like to have a child with special needs or the fear of losing one. I just thank God for a place to go and had 1 week out of a lifetime without any worries. Thanks to each and everyone who made it possible. I will try to post some pictures soon!!!!

Friday, May 5, 2006 8:34 AM CDT

Hello Everyone!

Thanks for all the prayers over the last couple of days. Things have been so busy for us with Ethan in the hospital and trying to get things line up for the trip. The Drs thought last friday with the lung down Ethan really shouldn't fly. We decided we would drive. It would be a long trip for us but we would take a couple of extra days. We went in to UNC on tuesday for the bronch surgery. The doctors where hoping to find just some mucus plugs in one area of the lung keeping it deflated. That again wasn't the case. a just lots and lots of mucus plugs down there not allowing the lung to come up. They went up on his trach again. We are having to keep him cuff almost all the time. It is very hard because he is able to talk. He doesn't like it at all and neither do we. When we cuff him he cries because he knows his voice is gone. That just breaks my heart. He really isn't very active when cuffed either. Hopefully this will only be a short time period. It is to see if there is to much leak around the trach and they may be keeping the lung down. They also went up on his vent support this trip. Hopefully when we get home and go back to UNC for our followup his lung looks better. It was still down when we came home this trip. We are still going to disney. The doctors all talked and feel he should be able to go. We are going to fly also. We are so excited. We leave out early Sunday. For everyone who knows the Myers Family this will be a challenge in itself to be there at 7:30 am. We can't hardly get to church at 9:55am. I told someone I think I just will stay up all night. I have everything ready but the last minute stuff. Once we get to Orlando, greeters from Give kids the world will meet us to take us to our Rental Van and to the village. Just pray for us that we have a safe trip and that Ethan is able to enjoy it without fever, breathing problems, or anything to put us in the hospital. Thanks again for all your prayers. We love each of you. Oh Yeah! Tara this page is for you. HAHA. Please sign the guestbook page. When you write us it really is an encouragement for Ronnie and I. If you don't know what to write then just say Hi and your name. It means alot knowing you check in. Take care!

Love in Christ,
Christy

Friday, April 21, 2006 10:14 PM CDT

Hey Guys!

Sorry it has been so long since an update. Things have been very busy around our house. Little Man is back up to his hosptial trips. He has been well for so long that he is trying to make up seeing his Picu nurses. Since the last update we have celebrated another victory. God has blessed us with him one more year. He is a big 3 year old little man. It is so hard to believe he is 3. Sometimes it seems like we have been on this roller coasters for a lifetime, but then to believe he is 3 makes it seem impossible. I celebrate he is 3 but my heart breaks that he is getting so big. He is really growing up to fast. He is able to wear Andrew's clothes which all who know Andrew know he isn't really big for a 10 year old in a few weeks. He got sick on his birthday running a fever of 105.9. We spent the next week at Wake PICU because UNC didn't have any beds available. He came home a contiuned IV treatment for 14 more days. We went back and forth to the peds office for visits, xrays, and more cultures. The left lung was down and as of yet still isn't up. We had an appt and UNC with Dr. Henry. The xray showed the lung still down so admitted him and did a bronchoscopy. He was so funny. I quess where he has been put to sleep so much he is really coming resistant to the sleeping meds. They worked about 1 hour trying to put him to sleep. He would say "Daddy, Wow, Wow or Mommy, uh oh". He was really cute. The doctors couldn't believe how much meds it took to put him out. They did the bronch and everything was as usual. His bottom left lung was totally down and full of brown thick secretions. They sent samples off for cultures. They only grew pseumonis as far as we know. They had to start a different antibiotic this time that he has never been on. All the other meds that he normal is able to use the infection was resistant to. It is alittle scary because he is now on a drug they don't like to use. This could mean we are coming resistant to meds which has been a big concern for awhile. We are on IVs for 21 more days. We go back to UNC next friday for a checkup. Pray things look better because we are scheduled to go Walt Disney World through make a wish on May 7. I just pray he will be well and able to go and have a wonderful time. It will so much easier to go without IVs. The doctor said we still can go but things will be tough. To have him in parks on IVs. God has blessed us so much over the last year that it is overwhelming to think about it. While we were at UNC this time we met a family with a 3 month old baby who had RSV (the resp infection in the lung) rodo virus (intestines virus), Cdif (infection in the bowels) and on life support. The lungs went down and they had to put in chest tubes to try to bring them back up. Ronnie and I were able to talk to the parents and they were both Christians. They had to remove their little one from life support. Even though we didn't know them personally being a parent of a sick child you experience somewhat of the pain. It is so hard because it seems everytime we go to the hosptial we have to deal with someone losing a child. My heart breaks for them. The only good thing out of it is they have Christ in their heart. They have hope. If you don't know Jesus Christ I truly don't know how you get through this. People ask me and Ronnie all the time how do you do it. All I can tell is God truly does give you GRACE. No it isn't easy but he does give you Grace everyday to deal with it. We had a new family more to our church from Florida. I feel God has a plan for them in our life. They had a 2 and 1/2 year old son they lost to CF on DEC 29. On Dec 30 they found out their 6 month old daughter had CF. They are so remarkable to watch. They are living proof of God's Grace. Pray for them as they deal with their loss and deal with the problems that come from CF. The baby's name is Olivia. She is so sweet and cute. They have 2 other children also. Thanks again to all of you for all your love and support. We love you all!!

Monday, March 20, 2006 10:23 PM CST

Hello Everyone,

Hope this fines everyone well. Things have been going GREAT!!!! It is so amazing to see how far our little man has come. God has truly blessed us more than we every deserve lately. Can you believe on FRIDAY OUR LITTLE MAN WILL CELEBRATE HIS 3RD BIRTHDAY!!! We have had alot of ups and downs but God has brought us through each one. Sometimes it seems we have been on the roller coaster ride forever and then it seems impossible he could already be 3 years old. He had to have a educational accessment done last week. I had to tell his story and what all he had been through. The lady asked me were was my nurses license. She said I don't know how you do it all and keep up with everything. All I can tell you is by GOD's GRACE. He has truly given the energy, mind, heart and peace to deal with each trail. We had to tell her our goals and dreams for Ethan. She asked if I every thought he would walk or come of the trach and or vent. I told her all things are possible with GOD but if he never did then it was fine. I feel like me and you all that keep up with him are able to see a miracle everyday. On Sept 24, 03 we were told to take him home, love him because he wouldn't live to be 1 year old. Well God had a different plan for Ethan's life. He has allowed Ronnie and I to have the honor to raise such an angel. He is wonderful. He brings so much joy to our home. His is really starting to be a mess. Ronnie and I have tried for 6 months or longer to get him to say I love you Mommy/Daddy. Well he will not. He will tell Andrew and Emily Grace he loves them but not us. When I tell him to say it he just laughs at us. He knows we want him to say it. He is really talking so much and saying everything he hears. He loves to watch Price is Right. He says Come on down! It is so funny. He is able to say ABC's, count to 10. He got his back brace in and is doing really well with it. We are now in the process of getting everything ready for the powerchair. He has a loner and is doing really well with it. He is so afraid he is going to hit something. On Saturday they built his ramp. It is going to be wonderful. I know Ronnie's back is glad. Now with the Van/ramp and house ramp we can go without Daddy having to always be home. The nurses can take him out daily if the weather is pretty. He loves to walk outside. He tells the nurses lets go, lets go. At church a couple weeks ago he was calling me and finally told Ronnie lets just go. He gave up on me and was ready to leave me behind. I love to hear him talk. He loves to call all the names of the people working with him. He thinks if he calls there names he won't have to work. I truly want to thank each of you for all the love and support over the last 3 years. You all have been wonderful. We are having his party Saturday at 5:00 pm at our house. We would love for any of you to come. Just email me or call. We also got our approval to go to Walt Disney World for Make A Wish. We are so excited. We should find out the date in the next few days. I will let you all know when. Just pray he continues to stay well. This is the longest he has every been home and out of the hospital without any admisson. We go April 10 to UNC for check up. Thanks again. We love you all!

Thursday, February 2, 2006 9:57 PM CST

Hello Everyone!

Sorry I haven't updated you all lately. Things have really been crazy around our house. Ethan is doing GREAT!!! It is amazing how he has stayed well with all the sickness going around. He is really starting to be a 2 & 1/2 year old. He is talking so well and repeating everything he hears. His newest saying is OLD MAN! ALRIGHT! I'M SORRY! Today he had his PT and OT together. They put him in his AFO(LEG BRACES) and he stood with them holding him. He put pressure on both legs and lock them both. It is amazing to see how GOD has truly blessed this little man and contiunes to. I was looking through his baby book tonight. Andrew came up and it was Ethan's first Christmas. His eyes teared up and he said, "Mommy I really miss him being that little." It is hard to believe he will soon be 3 years old. Oh Yeah!!! Ethan has been granted his Make a Wish!!!! We are hoping to go to Walt Disney World during Easter break. That was Ethan's wish to go see Mickey and Nemo. We should know for sure the next week or so. We are excited. That is about all the good news we have recieved lately. Our doctor at UNC have been concern for sometime about Ethan not having 24 hour coverage. After he coded on Dec 9 they requested him getting 24 hour coverage. Believe it or not we have some wonderful Insurance. BCBS. They approved it. We had a secondary insurance known as the Katie Beckett Program (Cpap C) a form of Medicaid based on Ethan needs and not our income. Because BCBS is so good and approved the nursing they have or will be pulling out. They helped pay for Ethan formula which is very costly. It is over $1000.00 per month. It helped with therapy after our BCBS calender period ended and 4 hours of nursing a day. Because he is truly a hosptial at home our wonderful insurance has stepped up to pay for 24 hours a day. So therefore our wonderful screwed up state has decided he doesn't need it the cpap program. None of Ethan's needs have change any. The only thing is BCBS will be paying for all our nursing but because they will be doing that they feel we don't need the service. Ronnie and I truly need your prayers. It is so hard having a child with a disablitiy. The cost is so unbelievable. If you don't have a special needs child you will never know. Just paper towels, soap, germx, the everyday supplies that he has to have that isn't covered is unbelievable. We have found his milk wholesale which will still be 600.00 a month. To make things worse after talking to cpap and trying to get them to see things from a families view. The manager told me if we couldn't handle him to put him in an instution. I was so mad. I couldn't believe someone could be so cold and cruel. It only proved to me more how much the system is messed up. If we did put him in a home they would be paying for everything but they won't help keep a family together. I started thinking about all the kids with problems whose parents don't care or don't know how to fight to get help. They truly have no hope without GOD!! I know we are in a valley and GOD is still on the THRONE!!! and whatever his will is going to be done but as I told our pastor last night when your the one in the valley you don't always feel there is light at the end. Just pray Ronnie and I will keep our faith and strength to keep fighting. Ethan deserve the BEST and he will get it!!! GOD hasn't let us down yet and I know he will come through right on time. Ethan has to little friends I would love you all to add to your prayer list. Lindsey Efrid (caringbridge.org/lindseysmpsjourney) and Blaine Philyaw (caringbridge.org/blainephilyaw. They will touch you heart. Lindsey is a family we met at UNC and Blaine is a family we met back at DUKE ICU in 03. If you read their pages you will see how GOD is still in the miracle making business. They are both miracles but exceptly Blaine. He coded for 49 minutes and they got him back. He has alot of problems but GOD has used that little man. He is now going through some major therapy and his Mom really needs your prayers. Thanks in advance for it. They will really appreciate it. Just alittle advice. Don't take life forgranted!!! Enjoy the present because that is all you have. You can't change the past and the future may not come so enjoy everyday you have with your love ones. You only have this life once. Make it count!!!!! Thanks for all you love, support and prayers. We love you all!

Sunday, January 1, 2006 9:53 PM CST

Happy New Year Everyone!!!

I just you all have made your New Year's Resolutions!!! Diets, get out of debt, go on a huge vacation. HAHA. First of all let me say 2005 was a wonderful year with lots of ups and downs but God truly blessed our family beyond measure. We have so much to thank him for. Ethan over all spend alot of time at his condo in UNC but with God's grace and mercy with had him for 1 more year. The christmas holiday was wonderful. He didn't really understand what was going on over all. He didn't like Santa. He stopped by the house to visit him on Thursday night and he gave him the bad eyes and told him BYE BYE and to move, go on. He was so funny. Emily Grace truly didn't let him touch her. They all had a wonderful time. Ethan enjoyed being the center of everyones attention. Emily Grace enjoyed eating the paper. Andrew and Ashelyn enjoyed the gifts. Ronnie and I was so excited to be able to have Ethan home for our first Christmas as a family. It was nice not spending it at UNC. If you have never spent the holidays in the hosptial or away from your family you need to thank God. It is truly a very hard thing. I can't imagaine the soliders family having to go through that so much. Our soliders and their families sacifice so much for us all to have freedom. We all need to pray and lift them up daily. We have several families in our church and I have a cousin that is now in Iraq right now fighting for us. Please pray for them, their safety and their families they leave behind. Emily Grace came home from the hosptial yesterday morning. All they found to be wrong was strep. In probably got in the blood stream and made her get sick fast. She is so rotten. She doesn't want Ronnie or I to get out her eye sight. We held her so much in the hosptial that she is now our little lap baby. Ethan hasn't gotten sick so far. We have been very careful to keep him away from her. Andrew is doing better to. He isn't so excited about school starting back tomorrow. Thank you all for all you love, support and prayers over the last year. We couldn't have gotten through it without all you prayers. Please contiune to lift our family up. I hope and pray each of you have a wonderful 2006. Take care and we love you all! Happy New Year!!!!

Sunday, January 1, 2006 9:53 PM CST

Thursday, December 29, 2005 10:53 AM CST

Hello Everyone!

Sorry for such a late update. Things have been crazy around our house. We prayed for Ethan to be well and be home for Christmas with the whole family. He was and had a wonderful time. He is really doing great right now. He hasn't been sick since our Dec 9 scare. He loved everyone being over for christmas and looking at all the gifts. He really didn't care about anything other than his orange lego blocks. Andrew got him a new set for Christmas. He opened the box and put all the colors to the side but the orange. I told Ronnie that Santa could have wrapped up the old legos and he would have been as happy. God truly has blessed us the year beyond what we ever deserve. Andrew got sick with his asthma on Christmas Eve but did well over all. Emily is now in the hosptial at Besty Johnson. We are not sure what is wrong. They thought she had strep throat but the test this morning was negative. She doesn't have RSV or Pnem. She has been to the doctor since tuesday getting shots. Last night her fever went to 105.7. We took here to the ER and they admitted her. We hope it is nothing bad. If all the test come back nothing then I'm afraid they will have to do a spinal tab. I'm really not looking forward to that. Just keep us in your prayers and pray Ethan doesn't get sick do to all this. Thanks for all you love and support. I trust each of you had a wonderful Christmas at home with you family and truly enjoyed the REAL reason for the Season.

Sunday, December 11, 2005 10:36 PM CST

Hey Guys!

Just wanted to update you all on a few things. The sing on Friday night went really well. Ethan had a great time. He really enjoys hearing singing. He clapped, said Yeah, told people thank you for coming, gave out hugs and kisses. He truly was the star of the night. Not knowing 3 and 1/2 hours after coming home our world would once again be turned upside down. The nurse's shift ended at 12 midnight. They are suppose to speak to us and let us know they are leaving if we have gone to bed. Ronnie and I were in the den watching the news and fallen asleep. Our monitors are in our bedroom which stay on 24/7. She left and we didn't know it. I woke up to the machine alarming and realized she wasn't here. I jumped up went through the kitchen to his room. On the way through I looked at the clock. It was 12:35 am. Once I walked in his room my heart stop for a moment. The alarms were going off, but Ethan had moved and the vent tubing had came off. He had no heart beat, no pulse, no oxygen level to read on the machine. He was blue and very cold. I yelled for Ronnie to come I needed him now. I tried to wake Ethan, but had no response. Ronnie tried still nothing. We suctioned his trach, but nothing. We started bagging and Ronnie started chest compressions. I truly went in a state of shock and panic. I just knew God had decided Ethan work on this earth was down and now he had taken our Angel home. I ran and called 911. We got his heart beat and pulse back and O2 were coming up slowly. Once his vitals were up he still wouldn't responsed at all. He laid there lifeless and his eyes rolled back in his head. It seemed like forever before Ems team came. They transported us to Besty Johnson Hosptial. Dr. Chiodo met us there. They already had UNC life line notified. The air crew was on stand by waiting for the call to come. Dr. Chiodo was amazing. She had everything in place and ready to start working on him. They did all the test and determined there was no Brain damage done. All blood work looked good. The doctors at UNC and her decided that he needed to go to UNC and stay for aleast 48 hours to be observed. I can't truly tell you how it feels because we are metally, physically, and spiritually exhaulted. My heart still breaks for Andrew he was up and knew everything going on and kept saying Ethan please don't leave me, please don't die. He started begging me to pray. Mommy please pray. At that time my heart and mind could do anything, but cry. He went to his room and began praying and pouring his heart out to the Lord. After Ethan left on the EMS truck I was getting ready to go to the hospital. It is amazing how God uses children in our lives and gives them knowledge of what to do. He did let me know had I listened to him and prayed that God would have answered us faster. I thought I was ready and could handled whatever God choses for his life. WELL Quess What? I have lied to you. I'm not. I was emotionally gone. I wept and beg God not to take him. I have thought so much the last two days about Mary. Since it is Christmas time it has been on my mind more. My heart aches for her. She had to be so broken hearted. I can't imagaine having to watch and see Ethan go through a 1/4 of what Jesus Christ went through. She truly had to be the strongest woman I know. He came home this morning and was able to go to church. Andrew's Christmas program was tonight. Ethan went and loved it. I just want to say thanks first our HEAVENLY FATHER for once again bringing us through another miracle and to everyone who prays daily for us thatnks. We love you all!

Tuesday, December 6, 2005 9:41 PM CST

Hello Everyone!

Well what can I say GOD is GOOD!!!! Things are going great so far. We came home on NOV 29 and this time without IVs. We don't know how to act. We have repeated the blood cultures 3 times and so far they are clear. He had clinic today at UNC with his pulmonary and rehab doctors. The lung was up and she was pleased with how well he was doing. He is having some yellow mucus in his trach but hopefully nothing will occur. His rehab doctor is trying us in a power chair. He is so cute because he really enjoys moving the joy stick. I have to get me some hard toe shoe. HAHA. He ran over my feet about 3 times already. Our goal is to have him be ready to use and get in his own by the time he is 3. It is truly amazing to look back and see how far he has come. He has been trached and vented now for 2 years now. Somedays it seems like a life time and others like a few weeks. It was truly the hardest decision I believe Ronnie and I were every faced with but it truly has been the best thing for Ethan. He is getting to be so big. The rehab doctor want him to slow down growing so he has to go on a diet the first of the year. HAHA. I told him he could start with me. He just laughed like he knew exactly what I was talking about. He is really starting to say alot more things. He is now saying Merry Christmas and HOHOHO. The benefit sing for him is Friday night Dec 9 at Central Baptist Church at 7pm if any of you are able to come. We would love to have you. Pray Ethan stays well and is able to attend. Take care and We love you all!

Tuesday, November 22, 2005 8:29 PM CST

Hello Everyone!

Just wanted to update you and let you know the good and the bad. First, Saturday turned out great! We were truly blessed with a wonderful turnout. Thanks to everyone who helped out in anyway. The golfers seem to have a wonderful time and Ethan enjoyed being out. He was so cute. Everytime someone would win their prize he would clap and say yeah. I could have eaten him up. The bad news is well guess where we are? Yes our home away from home. On thursday he had appt at UNC and things looked good. They took cultures and they came back that he has the fungus and yeast in the portacath again. The left lung is down and he has pneumonia. He didn't seem sick at all. It looks like unless something changes the port will have to be remove tomorrow morning. The doctors are afraid if the yeast and fungus get in the blood stream things will be bad. I really hate to loss the port but we have to do whatever is best for Ethan. They will put a temp line until he gets a clear culture. The worst part I believe is having to put him back to sleep and being cut on again. He little body has so many scars and has to go through more than he should every have to. I told him last night he really didn't plan on being home for thanksgiving. He has been in the unit every year he has been born. I told my mother-in-law tonight that so many people take their kids for granted. We get so caught up in our day to day things that we all stop to truly enjoy the gift God has blessed us with. It is so hard knowing we won't get to be together with our family. Andrew and Emily can't go in the unit now because of the RSV and FLU season. Anyone under 12 can't go in the unit. It is so hard to explain to Andrew that he can't go in and him understand. I pray that they will be able to fix things fast and us be home for the rest of the holidays. He has a gospel sing planned for Dec 9 and Central Baptist Church which. The Anchormen will be there. Please if you can attend come. We would love to have everyone and hopefully Ethan will be able to be there. I have to go get some rest. Take care and We love you all

Sunday, November 13, 2005 10:14 PM CST

Hello Everyone!

Sorry for the late update! We are home as of friday evening! God truly answers prayers. We didn't have to have the portacath removed which was a HUGE PRAYER answered. They were able to treat the yeast in the line by antiobotics or antifungil ivs. We have 4 more days. On thursday we go back to UNC for test to make sure the infection is clearing up. We were very worried about the port having to be removed. When the 2 cultures came back clear it was a huge relief. Not having the port would be a huge risk for Ethan. He seems to be acting more like his little self. He is so funny. I could eat him. I was so excited about getting back to the hosptial on Wednesday. I bought him the Elmo goes to the doctor stuffed animal. I just knew he would love it since ELMO is his favorite cartoon. Well, I was wrong. He doesn't like it at all. He loves the books, puzzles, shoes, shirts but not animals. I think it scares him. Everytime I would give it to him to take its temp or wipe his nose he would NONO! They are planning to bring out a power wheelchair this week for him to start working with. That is a scary thought of him driving a chair. He will probably have everything broke up in our house. It will be neat though to see him be able to control himself. He is such a miracle. Everyday as I look at him I can't believe how God keeps blessing us over and over. He is so fun to watch him trying to repeat things we say to him. Please contiune to pray for us. Also don't forget the gold tourament this Saturday Nov 19, at Sandy Ridge Country Club at 9:00 am. Everyone is invited. Thanks for all your prayers. Please sign on if nothing but to sign your name.

Tuesday, November 8, 2005 7:51 AM CST

Hello Everyone!

Just wanted to update everyone and let you know we are back at our home away from home. We had to admit Ethan last night around 10:30 pm. He finished his IV antiobotics 7 days ago and 2 days later the fevers came again. We have been running fevers and have lots more secretions over the last week and praying for no admisson but he we are. We did cultures at Besty Johnson and they cultured out a Yeast Infection in the Portacath(the central line to his heart used for his IVs). So far his is doing well which surpised our Peds Dr and UNC team. Normally you became very sick. If the yeast contiunes to spread it could be very fatally. They are really being very careful with him because it also affects the kidneys. We have been having terrible kidney levels lately. The medicine is put the IVs but is a antifungil medicine instead of antiobotics. It has some really tough side affects they are watching for. The main ones are the kidney problems but it also causing the body to have really bad shakes. They will have to give him Benadryl and Demerol to control it. I really don't like the idea of him getting Demerol. The treatment has to last 14 days. They repeated the cultures at UNC to make sure we were treating the right thing and make sure the cultures were right from BJ. We are praying that we don't have to lose the port. If they have to remove it do to the infections it will be aleast 8 weeks before they can put another one in. That will not be good for Ethan since he doesn't have any veins. It is so funny because everyone who truly knows me well knows I really don't like people to see me cry. That isn't the case lately. I have really had a hard time lately dealing with everything because I feel he has come so far and now for 5 months we have truly not been off antiobotics through IV thearpy. I told a friend this morning who truly has to walk in shoes like ours that evertime we go back in the hosptial it gets harder. Ronnie and I had a talk with Ashelyn and Andrew a couple of Sundays ago about Ethan. We truly wanted to see have they felt and what they thought. Ashelyn is much older and very wise for her age. She is thinks more like an adult than a child. Andrew knows he is very sick but truly thinks like a child. He was so cute. Ronnie told them that Ethan had truly been blessed and God had given us our own family ANGEL!! and he had come along way but God may choose not to heal Ethan. Our biggest prayer is to give God the Glory and never become angry or bitter. So many people do and we truly count it as a joy that God in trusted us to take care of such a special little man. During the talk Andrew told us he thought Ethan would walk, go to school, play ball all the things we all take forgranted. Ronnie told him we truly believed he would do all those things to but if that didn't happen how would he feel. He told us that we never done enough but if Jesus told him had to go then WELL HE HAS TO! YOU HAVE TO DO WHAT JESUS SAY YA'LL!!! are we finished. It is so hard to watch them hurt. People truly don't think of the toll it has on children but it does. They have to share they parents, stay here and there, miss having family outing all together, things we all take forgranted. My biggest pray is that everyone who follows Ethan story truly learns to slow down in our crazy fast paced world and enjoy our time together. The golf tournament is coming right along and schedule for next Saturday, November 19, at Sandy Ridge Country Club at 9:00 am tee time if you are interested. Also there is a gospel sing scheduled for DEC 9 at Central Baptist Church for him. The monies received will help pay on the van and lift we had to buy and also hosptial bills, and everyday supplies. Thanks again for all the prayers and support we truly love each and everyone of you!!!!!!!!

Tuesday, October 11, 2005 2:58 PM CDT

Hello Everyone!

Hope everyone is doing well and enjoying the cooler weather. Things have been up and down alot with us lately. We have been in and out of the Picu unit at UNC and WAKE MED since July. We are now on the 9 admisson. Hopefully we will be heading home later today. The left lung is really started to stay down more than up it seems. We have been on IV antiobotics since July. The real scare is at some point his body is going to say enough drugs and become resented to them. We will be on a total of 5 weeks this trip. It is getting harder everytime coming back because Ronnie and I get so tired of hearing we don't know why. Ethan truly is a miracle child and we realize that but it is so hard being a big hospital and really not having any answers. They had to change vent settings and put in a different trach again. The last admisson we changed to larger trach hoping it would help the lung stay up. Since it didn't and we are having so many infections they decided to put in a cuffed trach. We now aren't able to hear him talk. Hopefully after a few weeks of giving the lung a break we will be able to keep it deflated. It has been really hard on everyone including Ethan. His little voice is truly our support. Being able to hear him call you name, say funny little things, tell us he wants to see Elmo or just go outside really is hard for us not hearing him. I really have had a tough time because their is so many times as a parent we won't our kids to just be quiet for 5 minutes to have some peace. Now I just would give anything to hear him tell me outside, love ya, elmo. Ethan really knows there is something different because he has really stopped trying to talk. He now just points to whatever he wants. Andrew laid in bed with me last night and cried himself to sleep because he missed him so bad and I had to explain we wouldn't hear him talk. To him it is so unfair but how do you explain to a little boy this is the way it has to be for now. Emily Grace is really growing up to fast. She now has 2 teeth popping through, crawling everywhere and trying to take over Ethan's Boss position. He really loves to play with hear. It is so fun to walk them together. For all of you who hasn't heard several of our friends is doing a golf tourament for Ethan on NOV 19, at Sandy Ridge Golf Course. The money is to help us pay on the van and wheelchair ramp we had to purchase. Unfortunaly insurance doesn't help out with it at all. I know they need help so if anyone would like to help contact Kim Howell at 910-525-4185. There is also a sing scheduled for Dec 9 at Central Baptist Church. The Anchormen will be there. I believe it is a love offering and all monies go to help pay for Ethan's expenses. Thank so much to each of you for all you love, support but most of all prayers. God has truly blessed our family more than we ever deserve. I will try to keep you posted on updates. We love you all!

Christy

Sunday, July 17, 2005 5:51 PM CDT

Hello Everyone!

First of all let me start by saying how sorry I am for not updating in forever. Things have really been busy around our house lately. Ethan Scott is now a BIG BROTHER! Miss Emily Grace arrived on Feb 17. She weighed 5lbs 2oz. It is so different having alittle girl around the house now. However Ethan is still in charge. He has really enjoyed being the big brother. He loves to kiss and hug her. It is hard to believe he is now 2 years old. The LORD has truly blessed us beyond what we deserve. It is amazing to look back and see how far he has brought him. He is now starting to do so many things. He is talking really well and able to do some sign language. He loves to look at books, put puzzles together, play with legos, and most of all watch tv. He is able to sit without support. He is now starting to put some weight on his legs. It is truly a miracle to watch him. Everyday I see him do something new that the doctors thought wasn't possible. It truly show there is nothing to hard for the LORD to do if we only pray. I want you all to know that we couldn't have gotten through this without all you love and support. Thanks for all the prays. I will try to update soon!
WE LOVE YOU ALL!

Thursday, February 10, 2005 6:44 PM CST

Hello Everyone!

Sorry it has been so long since I have updated you guys on Ethan. Things have been really crazy around our house since Thanksgiving. He was in the hosptial in Dec for a short stay. Thank God we were able to come home on the 24 around 6:30 pm. Just in time to spend with our family. Ethan really had a wonderful Christmas. It was so exciting to be able to watch him sit up and open his on presents. He really liked the paper more than anything. As most of you know we built on to our home to make more room for him. It is finally complete. He truly loves his new room. We are back in a UNC again. We came back in on Feb 7 due to infection in the trach again. We are hoping and praying he is able to go home by Monday. The new little family member is suppose to be here on Thursday at 7:30 am. We are all so excited about the arrival but also very nervous too! I can't wait to see how Ethan reacts to her. He doesn't like me holding other baby boys so it should be a true adventure. We are fixing to approach our 2 year old birthday soon. It is so amazing to look back over the last two years to see what God has done. For alittle one who shouldn't be alive he has truly come along way. Everyday as I look in those beautiful baby blue eyes and he tells me nonono I can't help but cry to look and see the miracle God gave to us. He has truly been a angel sent from HEAVEN! He learns so much new stuff all the time. His new thing he loves to do is fix his fingers like a church. Everytime he does something he truly expects everyone to clap for him. We were at the rehab drs a couple of weeks ago. He put Ethan on alittle diet. He was afraid he was getting to big. He weighs 30 lbs and is 34 in long. It is so funny because Andrew only weighs 42 lbs and is 48 inches tall. I told Andrew by next year he would be wearing Ethan's old clothes. He thinks that is so funny. I have to close and get back in the unit before shift change. I promise to try and be better about updating you guys. Take care and We love you all!

Wednesday, December 22, 2004 9:06 PM CST

Hello Everyone!

Sorry I have taken so long to update you guys. Things have really been crazy around our house. For those who don't know we have totally been under extreme home makeover. Ethan really needed a longer room and a handicap bathroom. So the week before Thanksgiving we remodel our bathroom and bedroom and gave it to him. Ronnie and I have been sleeping here and there. Hopefully in a few weeks our room will be ready. His room and bathroom are wonderful. He has so much room now to do floor time and PT, OT and speech work with him. He has been doing really well until last thursday. We had a doctor appt and found out he had RSV. He really did well with it over all. Last night he started to fuss and cry alot well for 3 hours and we could get him to stop. He started running a high fever so of to the ER we went. They did lots of labs, tests, and xray. The fever came down and we got home aroung 4 am. We had to take him back to the doctor this am and the portacath (central line to heart for IV's has came back with an infections). So guess where we are? Yes our wonderful home away from home. UNC!!!!! We were admitted tonight around 8pm. We really have to be careful with the line because it could be deadly. We are hoping and praying that maybe GOD will work another miracle and we go home for CHRISTMAS!!! GOD will have to do it though. It will be tommorrow before the cultures come back with the drugs to treat the infections. Then usuallly we have to stay aleast 72 hours to make sure they are working. It was really hard on me today. Lately things have been hard on Andrew. He really understands and knows to much about Ethan's sickness. I know that can be good and bad. He was so upset tonight with Ronnie and I because he thought it was unfair for us to leave with Ethan and santa comes in a few days. How do you explain to alittle 8 year old that things could be very bad if we don't get Ethan better. It is alot harder this year because the unit is closed to anyone under 13 due to the flu shot shortage. It will be really hard on us this trip because we feel torn between the boys. Andrew wants us home and Ethan needs us here. Just pray that things will work out for the best. Anyhow, enough about that. I don't believe I told in the the last journal entry but we are planning for our new little bundle of joy to arrive Feb 21. My csection is scheduled for that date unless something should happen before. It is suppose to be a little girl. Andrew and Ashelyn are so excited. Ethan really doesn't understand yet. I let him feel my belly and her kick him all the time but all he really does is so no no. He is so funny with all the little tricks he does. He just started this week if you ask him to give you the bad eyes he will roll his at you and turn his head. I could eat him up. Well I need to close and get back in the unit to check on him. Take care and we love you all!

Wednesday, October 27, 2004 4:52 PM CDT

Hello Everyone!

Sorry that I'm late on updating you guys on little man. We came home on Monday afternoon. They didn't find any reason for running the high fevers. Over all he is doing well. I really feel it is due to teething but they don't think his fever would run that high with that. He is cutting 4 teeth at one time. Ethan has never believed in cutting one at the time. He has always had 2 or 3 coming in together. He has learned how learned how to blow his nose. He thinks that is so funny. However, he doesn't use a tissue. If you tell him no he only does it more. He has learned how to say thank you in sign language now. He is so cute doing it. He loves to use more and give me. I told the speech therapist to work on love you. As most of you know we are now having to stay home due to all the colds, flus and etcs. It is really going to be hard on us. Ethan loves going out and seeing people. It is so hard to explain it to Andrew to because he can't really understand that someone could have something and he get it. He truly deals with Ethan's diease over all like a trooper. Hopefully after a month or so of being well and off antiobotics Dr. Henry will let us go out some. The worry is that he gets something from someone and due to being on so many antiobotics that he not have a drug that will help clear it. Continue to pray for our family. We love you all

Sunday, October 24, 2004 3:15 PM CDT

Hello Everyone!

Just wanted to update you guys on little man. We are back in at UNC. Since we came home on tuesday he has ran a fever. Only friday the fever went up and the lung sounded alittle more congested. They ran several cultures but so far nothing is showing up which is a really good sign that he doesn't have anything else. It is also very frustating because we don't know what the fever is from. The hadn't gone done and todays xray looked really good. We have to be concern do to the portacath. It is a central line that goes to his heart which we use for his IV's. When you have that you always have to worry about the risk of infections because it could be very deadly. The attending asked Ethan did he think after so many visit his trip would be free. Ronnie and I wished that was the case. He still isn't acting sick at all. He is playing and showing off. I haven't talked about it yet but on NOV 18 they are doing the NC CHILDREN'S PROMISE teleathon live. We were asked by the hosptial if we would tell Ethan story live over the radio. We are planning to do it. I would encourage everyone to call in and give a donation. It is for the children and families at UNC only. It will broadcast for 24 hours I think. Please pray about it and if you feel lead to give please do so. Thanks for keeping up with us and lifting Ethan up daily in your prayers. We love you all!

Wednesday, October 20, 2004 8:22 AM CDT

Hello Everyone!

Just wanted to update everyone and let you know we are home again. We got home around 12:45 pm. He seems to be doing well over all. The lung look wonderful when we left the unit. Over the last 2 weeks it has gone up and down. They had to go up on his vent support. It was hard to see them have to increase it because he has done so well and not needed any changes since he was vented. They still are amazed how well he handle his own over all this time. He never had to be put on oxygen. That over all was not like him. When the lung has gone down all other times his has had to be put on oxygen and really had a hard time breathing. The only reason they could give us was he had been on IV therapy for 21 days so the infection didn't have time to get him in true resp ditress. He really liked being in the hospital because he got lots of attention. There were so many sick kids this trip. The nurse loved coming to his room to see someone be able to play and talk. He really put on a show for them all. He enjoyed showing them all his little tricks. I think I posted in my last journal we were planning to go to Cananda for Ethan's Nemaline Myopathy Convention. We were supposed to leave on Wednesday but that has all changed. Ronnie and I are still trying to work things out to be able to go. If we can line up the nursing we are going to fly out Friday and come back late Sunday night. We were sad because we have looked forward to taking him and everyone be able to see him and us see their kids. Our Dr. decided for us that it is best for Ethan to stay home and be home bound until we see her on Nov 2. I feel this is the starting of our long winter months. This is when it becomes a hard time for me. It is one thing to have a handicap child but to have a handicap/fragile one is totally different. You are always having to worry about everything going around. It is so hard because with Andrew in school and us at the pharmacy we bring home every kind of germ. The staff in unit told Ethan when he left they would see him next year. That they loved him but we needed to purchase a new condo instead of the UNC one. As I know all of you will please contiune to pray for us and lift him up daily that God will contiune to bless and protect him. He has truly come along way in a year and we know it is by pray and the GRACE OF GOD!!!! Thank you each and everyone for all the love you have shown to our family over the last 19 months. Without TRUE FRIENDS like you it would be harder to bare. We love you!

Tuesday, October 12, 2004 9:42 PM CDT

Hello Everyone!

Just wanted to update you all on how things are going with us. Ethan is back in UNC picu again. We came in on Thursday. We had clinic with Dr. Henry on Tuesday. After checking him and thinking everything looked really well she decided since we had been on antibotics for 20 days and still the trach cultures came back with infections maybe we should do an xray. It came with the lower left lung down again and no air moving through. She decided to let us go home until her cultures came in. Over all looking at him you wouldn't think a thing was wrong. He is laughing, playing and keeping the staff on their toes. It is so weird how every other time it has been down he has been really low. The lung isn't improving at all. We had a bronchoscopy done today. Dr. Henry said there was lots stuff in there so they sent that off. It will be aleast 72 hours before we here from those test. They increased the vent pressure on friday to see if the lung would go back up and it didn't. That has got me alittle discouraged but I know God is still in control and he isn't done with Ethan yet. Last year this same time is when the left lower lung started to give us problems and we spend 3 months here. I just hope and pray this isn't the samething. Dr. Henry doesn't want us to go home until the lung is up and working for several days. We are suppose to leave on Wednesday to go to Cananda to Ethan's disease first every convention. We are so excited but now not for sure if we will get to go. If it looks like he will be in the hosptial Ronnie and I may try to fly out on Friday and come back on Sunday. That way we still get to go and find out all we can about the disease. Just pray that Ethan's lung will go up and he start to improve. I have had lots of time to scrapbook this weekend. It is so funny looking back a year ago and to see how far GOD has brought him. He truly is a miracle sent from God above. The nurses have really enjoyed Ethan this time because the unit is so full of sick little ones. Lots of the parents walk by and look back in to see what is wrong with Ethan because he is able to sit up and talk. When their little one don't move because they are on the vent. It is amazing how God is able to use Ethan, Ron and I here. We are able to tell parents that things do get better and God will bring them through alot stronger than they were before they came in here. Ethan is able to let parents see their child can have a life being a vent/trach patient. Thanks again for all you love, prayers and support. I know we haven't told you guys often enough but without our friends and church family support I don't know how we would have gotten through this. Kim, Preston and Trent. Thanks for keeping Andrew for us this weekend. It took a huge load off me knowing he was somewhere having fun. Well I need to close and go back in because I know he is crying. He doesn't want us to walk out of the room at all. We love each of you!!

Wednesday, September 22, 2004 8:04 AM CDT

Hello Everyone!

First of all let me start by saying how sorry I'm for taking so long to update you guys. Both of our computers have been down for months. Things are going really well with Ethan. He is now 18 months old, weighs 25 lbs, 34 inches long. He is doing great. Saying all that we have we have just had another stay at the hosptial. We are in and out about every 6 to 8 weeks with pseudomonis. Over the last several months Eman has really starting to develop his own little personality. He is talking really well over his trach. He is able to say Momma, DaDa, Bye Bye, Hi, No No, Nite Nite, and Nana. He is now sitting up once you help him get up. He is able to roll side to side. He still loves to watch TV. He got this from his Papa Mann. He is able to play with toys now and loves to see how they are put together. This is truly a male thing. With Nemaline Myopathy most kids don't live past 1 year old if trached and vented before age 1. Ethan was 8 months old when he made the decision for us. Looking back now this was and is the best thing for him. It was truly the hardest decision we had to make. Since the trach he has started to grow and be able to truly have a life. Lots of people are nervous or afraid of him but truly he is just like any other child he just comes with lots of tubes, machines, and equipment. Instead of crying his machines alarm. HA,HA. Oh Yeah! He loves to give you five, blow kisses, and points his fingers up like a gun, laughs out loud, and dances. I will try to get a new picture on of him in the next few days. For all of you who don't know we are expecting a new family member in late Febuary. We are all so excited. Ethan is going to be a big brother. Andrew and Ashelyn are looking forward to a new arrival. Of course Ashelyn is praying for a girl and Andrew says it doesn't really matter to him as long as it is healthly. We go tomorrow to find out what we are having hopefully. On friday we go to UNC to get Ethan wheelchair. Well his car. We could have got him a vechile for what it costed. Hopefully in a couple of weeks his stander will be in. It is a device we lay down, place and strap him in, then lift him up. It will have a tray on it to be able to play but it is designed to give him support for his legs. To help build up muscles and hopefully if it is God's will one day walk. Everyday with him is another day of God's blessings. He has brought so much joy to our family. I want to take this time to thank our church family. I really don't know how Ronnie and I would have gotten this far without all your prayers, love and support. You will never know what it means to us to have a church family that truly lifts Ethan up everyday. God has truly answered our PRAYERS! Even though Ethan is doing well now most kids that were diagnosed as a baby haven't lived past 6 or 7 that we are aware of. Be in pray for us as we go to Canada the last of October to Ethan's Nemaline Myopathy Convention. It will be the first one ever. It will also let us have the chance to meet parents and kids with this same diease. We are so excited. Just pray his stays well for us and we have a safe trip. Take care and we love you all!

Thursday, May 13, 2004 12:54 AM CDT

Hello Everyone!

First of all let me start by saying how sorry I am that I haven't been keeping you guys up-to-date on our little man.
Things have been going very well for him over the last couple of months. He now has his first ear infections. Yesterday he starting running a fever and fussing so the peds doctor came out. He is also probably got a trach infections now but it will be aleast saturday before the cultures come back to let us know what kind. He is getting so big. He weighs alittle over 21 lbs 30 inches long. He is holding his head wonderful. He is able to sit up in his high chair now and play with his toys for several hours at a time. He is saying momma, dada, byebye, hi and still telling us no for everything. His is such a bundle of joy. I can't begin to tell you guys how much joy he has brought to our lives. Everyday is truly a blessing God has given us to spend with him. I love going in his room and watching those little angel eyes lite up. He loves to hear music and for people to sing to him. He just kicks his arms and legs the whole time. We have been able to take him to church the last for months. That has really meant alot to Ronnie and I. We both where so involved in church and didn't won't to stop going or leave him behind. We have know gotten a wonderful nursing staff. They show up. HAHA. We changed companies a month ago and things are alot better. Our day nurse went with us and we have been blessed with a wonderful christian night nurse. She is doing most of our saturdays so we can spend time with Ashelyn and Andrew. They are both counting the days until school is out. I have had to go back to work now to be able to keep my nursing which has been very hard on me. I don't like have to leave him at home with the fear something is going to happen and I not be there to help. He still has alot of plugs in the trach and turns blues. We have to do the emeregency things. Yes our nurses are trained to do all this but we are all human and could freeze up. If we don't responsed within a certain amount of minutes he would be brain died or have brian damage. On May 20 we are going in to UNC to have the broviac removed and at portacath put in. This is a central line to the heart for IV use. Ethan doesn't have any veins so we don't want to be home and need emeregency line and not be able to get it and lots of times I have to give in IV antibotics through it. They will also do a bronchoscope that day. To look for any infection in the lung and scare tissue beginning form in the airways to the lungs. We are alittle nervous about it but God has been in control the whole time and he will be there with us now. Just pray for us that day. We will stay overnight and hopefully come home the next day. They will a that time fit him for a special infant wheelchair/stroller. It will help make sure he has the support he needs. I need to close and do my job. Our computer at home has been down for several weeks. Thanks for all the love and prayers. We love you all!

Wednesday, March 24, 2004 10:40 PM CST

First of all let me start by saying Thank You GOD for TRULY BLESSING OUR FAMILY WITH THE MOST PRECIOUS LITTLE MAN IN THE WORLD!! Even though this has been the hardest year of our life it has been the best. We have been able to see that prayers truly work as long as you have faith and believe. I have the pleasure of raising one of GOD'S Little Miracles. Everyday I stand amazed at how far Ethan has come in a year. One year ago today we received a very special suprise. Our little Emily Brooke was a beautiful healthy bouncing 5lb 11oz little baby boy. He came in the world surpising us and still does today. On April the 8 our whole world change. Our little man develop RSV and for 10 days we thought we were going to lose him to the virius. Not knowing our journey has just begun. I sit back now and laugh because I remember the nurses at CFVMC telling me Mrs. Myers he could be in the hosptial for 30 days or more to caught up. I looked at her and said if we are in a hosptial for 30 days I will be in Dorothy Dix. Well I haven't gone there yet but I'm sure Ronnie would love to send me there at times. Over the next several months all of you know how we stayed in the hosptial more than home. On Sept 24 our whole world changed. We thought we were just ready for answers. Why does our baby stay sick and in resp. ditress all the time. Well the answer came and we weren't prepared. I remember praying that this was just a dream. God this can't be happening to us. I can't handle a special needs child. Well God's plan wasn't our plan. He had a different plan and purpose for Ethan's life. I still don't understand or know but I can truly say God has been with us all the way. There are so many day Satan tries to get me discourage and tell me to give up. It isn't worth it but it is God has given me a very special role of being a mother to a Wonderful Little Angel. He knew Ronnie and I needed Ethan to strengthen our faith and love for Christ. The day we got the news I remember my Mom saying to me Christy you can't give up on Ethan. As long as he feels the love, you will to fight for him then he will be a fighter. Well Thank you GOD he is. He still amazes the doctors at UNC. In Clinic on Monday they were very pleased with how well he has been doing and how much he has grown. He is so big!!!! The only concern was on Sunday night we had a scare with him. My sister Tammy was here and I had just put Ethan in her arms. I was suctioning and during the suctioning he moved a mucus plug which totally blotted the trach off. He heart rate drop and his oxygen went to 50. He had turned blue. I changed out his trach and Ronnie was bagging him. During his whole ordeal I was thinking to myself. Ethan you can't let me down. You have to prove to the doctors that you can and will live past a year. I can truly say if Ronnie and I have alot of times like that you will be seeing at Wake Heart Center. After things where down Ronnie and I were justing getting our heart back in rythum Ethan staring smiling and kicking his legs as though he hadn't done anything. I would like to say thank to all of you for standing by us for this. Without friends and family this would be a very hard thing to bare. Thanks for everything. Please if you well and can come his party is Saturday, march 27 at Central Baptist Church! If you need directions just call me. 892-7293. We love you all!

Wednesday, March 17, 2004 5:05 PM CST

Hello Everyone!

Happy St. Patrick's Day! Sorry it has taken me so long to update you guys on little man. We came back home last tuesday night. Things have been really busy around here. He had to come home with 4 new meds. Our doctor wanted us to complete 2 weeks of IV antibotics so I have to give them every 8 hours, then he has 2 more antibotics that I have to give every 8 in between those. So as you can see we don't get alot of rest. We still don't have a night time nurse. Amanda is our day shift nurse who works 8am til 4pm. So I have him until Ronnie gets home from work. Most of the time it goes well but Andrew gets alittle jealous because Ethan has to get so much attention. Andrew loves Ethan so much. is so cute with him. First thing in the morning and afternoon he goes straight to his room and give him a hug and kiss. Almost every afternoon he takes his guitar in Ethan's room and plays while the two of them sing. It is so sweet. I thank God for a wonderful husband. Lots of men (sorry for you men that read my email and get upset) but come home from work, eat and sit on the couch until bedtime. I can truly say if Ronnie didn't help me out with Ethan I truly would be crazy. He is willing to do anything to help out. He tries to keep him several hours for me to get out and have some time away doing things for myself. We were able to go out to eat without kids friday night. It felt so funny to sit a table and truly eat a meal before it was cold. On Saturday a friend and nurse from our church came out and stayed with Ethan so we could go to church for our Easter production practice. Thanks so much Amy!! You will never know how much that meant to us. Well for all of you who haven't seen Little Man in awhile. He is Big Man! We go back to UNC on monday for clinic. I'm really excited to see how much he weighs and how long he is. I think some where over 20lbs and aleast 29 to 30 inches long. He is so big. He will be 1 year old on Wednesday, March 24. It is so wonderful to see how God has answered our prayers. So far even though this has been an up and down year he has truly come along way. He is getting stronger everday. He is really doing well holding his head and able to sit up with help for a short time. I'm very pleased with how far he has come since Nov. OT, PT and speech are still coming out 2 times weekly to work with him. It will take alot longer but with his will power and God's help he will get there. I want to thank all of you for being there for us. We could never tell you all how much it has meant knowing we have friends out there praying for our family daily. On Saturday, March 27 at 4:00 pm we are planning to have a birthday celebration for Ethan. It will be at Central Baptist Church on 421. We would love for all of you to come. If you need directions please feel free to call me. Take care and We love you!

Saturday, March 6, 2004 9:24 PM CST

Hello Guys!

Well we are back at UNC!! We came in Sunday night for some complications from an antibotic. They put him on Tobi for psuedomois and it made him start coughing up blood. It was really scaring. We stayed in PICU until Tuesday. He did really well until late friday afternoon. He starting running a fever and became very fussy. So our Peds Dr came out to see him. We did a trach and nasal cultures. It came back positive for RSV. The doctors became really nerves since that it what he had at 15 days old when we like to lost him at Cape Fear. UNC is very cautious with Ethan. They would like for us to stay home but because his history with resp. ditress they decided it would be better for us to come in for aleast 48 hours to make sure he didn't need in extra support. We had already had to increase his oxygen which was a sign he was getting sick. It is so hard being here because he is exposed to so many more germs. They believe that is how he got the RSV. Everyone is really careful but still there is that chance. If the cultures don't show he has anything other than RSV and we are able to get him back to the oxygen we had him on at home he should be able to go home by Monday. The doctors and nurses in the unit were so amazed by how much more active he is now. We have only been home 6 weeks. When we left he really wasn't doing alot. Today he said DaDa. Ronnie was so excited. He has about waved his little arms off waving at everyone. If you walk in an speak to him he starts waving. Our nurse today had to get another nasal culture and he looked at her and said nonono. We started laughing because it was just like he knew what she was fixing to do. He coos all the time. I thank God that he is such a good baby. He is so happy and full of life. He touches everyone heart that he meets. On March 24th he will be 1 year old. We are planning a party for him so all of you will be invited. It will be good for all of you to see him and realize miracles do happen everyday. That now matter what life gives you keep your head up, keep your faith, and trust the Lord to get you through it. Ronnie and I were able to go see the movie "Passion". I would recommend you take the time to go see it. It was wonderful. I can truly say I will never look at the cross or Jesus the same again. It was such a hard thing to see him suffer and know that he would have gone to the cross if it was just for me. My heart broke for Mary. I can't begin to imagine the pain in her heart as she watch her son suffer and die. It is so hard on me as a Mom to watch all Ethan has to go through and it is nothing compared to what Jesus Christ went through for us. One thing Mary said that will always stand out in my mind was I'M HERE! It is just like that with God. He has been here for Ronnie and me. Even when I get upset and think he has left us or put more on us than we can handle he is right there. I have to remind myself daily that God gave me Ethan for His Purpose not mine. I can truly say even though it is alot of work Ethan has truly been HEAVEN SENT! Thank you all for being there over the last year with us. Lifting our family up daily in your prayers. It is wonderful friends like you who have helped make this trial alittle easier to bear. We love you all!!

Wednesday, February 25, 2004 8:17 PM CST

Hello Everyone!

First of all let me start by saying I'm truly sorry for being so bad about updating you guys! Things are going really well for Ethan. He is growing so much. We went to UNC on thursday and our appts went great. The doctors are really pleased with how well he is doing. We finally got in to see a neurologist. He couldn't beleive how much Ethan had grown and how well he is moving. It is so amazing to watch Ethan everyday at home and see how the LORD is working a miracle right before my eyes. Ethan is doing things that most NM kids can't. He is waving bye-bye, saying Momma, and always telling us nonono. Everything you ask him is NO! I will be so glad when he learns what yes means. If I ask him does he love me, if his diaper dirty, is he hungry everything is nonono. I will be so glad when he can say yes or shake his little head yes. He is trying to hold his little head up more and more everyday. He stills look like a little wibble wobble but is doing alot better with it. OT, PT and speech are still coming out to work with him 2 times weekly. They all seem to be really pleased with how well he is making progress. It will take him alot longer but I truly feel Ethan will be able to sit and maybe walk one day. He is to much of alittle fighter to not. It is so hard to believe he will be 1 year old next month. This has truly been the hardest year of my life. We have really had alot to deal with but I can say from experience GOD doesn't give you more than you can handle. Our choir sings a song called His an On Time GOD! Well yes he is. He has always gave us the strength to face whatever we had to go through that day. I know alot of you ask me all the time how do we do it. Well God has given us Ethan for a reason. We don't know and may never know why but Ethan has brought so much love and peace to our hearts and so many of you. Everytime Satan trys to get me down or make me try to feel sorry for myself I walk in Ethan's room and look in his little blue eyes and watch that beautiful smile come on his face and see it is truly worth it all. The nursing situation still has alot to be desired. We only have a 8am to 4pm nurse now. It makes long days and nights for Ronnie and I. Ethan sleeps all night but he has several things to do so you don't get but about 3 hours of rest. It is hard on Ron if he has to work the next day to. I don't know it you guys remember me asking you to pray for a baby name Lexie we met at DUKE. She passed away about 2 weeks ago. During her heart surgery she has a heart attack and they had to put her on the heart and lung machine(jet). She didn't get any better so her parents had to let her go. I have to tell you they are two of the stronger people I have every met. I was able to go to Whiteville to the funeral and they were a testomony of how GOD is always there. They had such peace in their hearts. As hard as it was on them to let Lexie go her mom told me I prayed for God to heal Lexie. We dedicated her to the Lord and told him we give her back to you God whatever your will be in her life not ours. She said God healed Lexie!! It wasn't what we wanted but it was GOD's will. She said she isn't hurting anymore and she is up in Heaven whole. It was such a blessing for me. God knew Ronnie and I needed to meet this family. I told her I admire her so much because I have never heard her once question God as to why. I truly hope if we are every faced with this we can truly be that strong! Please continue to lift her parents up daily! I have to close and give Ethan a bath and his meds. Take care and We love you all!

Tuesday, February 3, 2004 7:02 PM CST

Hello Guys!

Hope everyone is doing well. Things are going great. Ethan had a clinic visit today and things went very well. He has a trach infections but he has really be able to maintain his own. I was really afraid they were going to keep him but since he has been able to keep his O2s up and not need extra oxygen she felt we could stay home. Our Peds doctor has been coming out to see him so we down have to take him in the office to put him at risk of getting anything else. I really can't tell you how much that means to Ronnie and me. It is such a tough job loading everything up and not forget anything. We are really hoping we will be able to get him out some by spring. It really take 3 people to get everything loaded up. It is so amazing how much he is growing. Dr. Henry is really pleased at how much he has grown since the trach surgery. Ot, Pt and speech are coming out to work with him 2 times weekly. Everyday he really seems to be getting stronger. He has started shaking his head no and making noises at me if I ask him does he love me. It is so cute. Everytime I go in his room he will start shaking his little head at me. I could eat him up when he does that. He has truly brought so much joy to our family. He is really a good baby. The nursing situation has started getting better. We have got our full-time day nurse. She is really doing a great job with Ethan. The night time nurse has only been 2 nights and is still alittle nervous. The weekend is still crazy. They haven't hired anyone for that yet. Well I have to go and give Ethan his meds and do his breathing treatments. Pray for Ronnie. He has the virius going around. Thanks for everything. We love you all!

Sunday, January 25, 2004 8:25 PM CST

Hello Everyone!

First of all I have to say I'm very sorry about not keeping you guys up-to-date on Ethan. We have been home for 10 days now and things are going really well. The hospital trip was the first short one we have every had. He only had to stay 3 nights and 4 days. They had to do some vent adjustments and increase his pressure support. We will go back to clinic on the 3rd of Feb. I told our doctor I wasn't taken him back because she always keeps him. We are really enjoying him being home with us. He is so sweet and such a good baby. He has the air leak around his trach which makes him be able to make sounds around it. He will coo and sing over the trach almost the whole time he is awake. The nursing help had gotten alot better but of course the snow and ice isn't helping out alot. We haven't had any help since friday at 4pm. That really makes for long days and nights. The day nurse they hired for Ethan is really working out well. She will work Monday thur Friday 8am to 4pm. They hired a night nurse on friday. She will work Sunday thur Thurs 12mn to 8am. On weekends we will have a floating nurse. The nursing director has been staying with us a night. She is wonderful. I really wished she could stay with us everynight. When she is here I feel like I have aleast been to bed. Lots of people ask me do I sleep. I do but I really never feel rested. We went to my parents yesterday for a family cookout. My sister is home now so we had her a welcome home party. We took little man. It seemed funny getting out of the house with him. It was a whole days work getting everything loaded and unloaded but it was worth it all. We still haven't gotten it together on the best way to put the cords and machines on the stroller but maybe by the next trip we will be better. I think he really enjoyed being out of his room. He pretty much stays in there all the time because it is alot of work moving all the machines and the nurses are suppose to be here all the time except 4pm to 12mn. I really enjoy that time with him. That is my time. I sit in his little room and we sing and play. He is also getting 5 teeth in. The bottom center two have broken through, the top two are coming in and he is also getting his back molar. He will put everything he gets his little hands on in his mouth. He loves to suck on a wash cloth, blanket or anything rough. He just fusses at it and smiles like it feels so good to his little gums. PT, OT, and speech are working with him 2 times a week now. He is getting stronger everyday. There is alot of work making sure we do everything just right and make sure we don't forget meds, feedings, doctor appts, ordering supplies but I can truly say it is worth it all. I really didn't know how I was going to handle all things that went along with taken care of him. I can truly say now God doesn't leave you. He has given Ronnie and me both the strength, peace, patience and grace to get through each day. I have always heard since I was alittle girl GOD doesn't put more on us than we can handle. I have to say during this there have been times I didn't believe that was true but he always has come through for us everytime we needed him. I really don't know what God's purpose is for Ethan or our family but I hope and pray we can stay strong in our faith as we go through this test. Everytime I walk in his room and he starts kicking his arms, legs and starts smiling at me I just get a new brust of energy. Thank you all for the food you have been bringing to us. We have really enjoyed it. Ashley, Crista, Michelle, and Gina. I miss you guys so much. It seems so funny not seeing you everyday or to. Your boy is really growing. I will try to get some new pictures on the site for you to see this week. He is still beautiful. I think he is around 18lbs now. Please email and let me know if any of you work on the 3rd. Our appt is 11am. If you are there we will go up to see you. He doesn't like his nurses here like he did you guys. Can you believe he is 10 months old! We will soon be having that big birthday party!! If J Fowler is still there tell his mom I said Hello and I was asking about her. Take care and we love you guys!! Please contiune to sign in. I still check the site even though I don't update! Love you all!

Thursday, January 15, 2004 9:06 AM CST

Hello Everyone!

Sorry I didn't update you guys before now but we had to put Ethan back in PICU tuesday after his appt. The lower left lung was down again. Dr. Henry was nervous about sending us home with it down because she knew a new infection would set in. They had to do some vent changes. The lung is looking alot better so far. He also has been having alot of plugs in the trach. I had to do 3 emergency trach changes since sunday. She cultured those but so far nothing seems to be growing from them. Thank GOD. That would only mean more antibotics and his little bottom really needs a break. He is really starting to be a singer. He lays around a hums all the time. The doctors and nurses said in the unit yesterday that he must love to hear himself talk. It was so funny when we went to the unit everyone was clapping and kisses all over him. He is in the same room. They told him they had been holding it for him. We really decided to go ahead and be admitted because they are really have a bed problem. So many kids are sick and they don't have room for them. Dr Henry said that we may come back and have to be moved somewhere else that had a bed so we decided to stay. It everything goes well we should be able to come home today or tomorrow. Andrew had the virius all night tuesday and wednesday so it was a blessing Ethan was in the hospital so he didn't get anymore germs. He is feeling better and went back to school today. Well I have to close and get to UNC. I will try to update you tomorrow! Take care and we love you guys!

Sunday, January 11, 2004 10:16 PM CST

Hello Guys!

Hope you all survived the snow storm. Things were pretty busy around here. The nursing didn't show up do to the snow so Ronnie and I had to take care of Ethan for 24 hours. I still haven't totally caught up on my sleeping. Andrew had a ball in the snow. He got a snow board for Christmas so him and all the neighborhood kids have spend alot of time outside. I took Ethan to the front door to look out at the snow, but he really didn't care about it. He has had a really good weekend. It seems so funny to be home with him. Things are really busy with him but he is such a joy. Last night he was sitting in his little swing and just talking and cooing over the trach. Ronnie said he said Momma but I had ran to walmart to get his diapers so I missed it. He has really tried to make alot of noise over the trach. I think he likes hearing himself. We were able to go to church today which is truly wonderful. I thank GOD for a wonderful church and people who TRULY love you. To our church family thanks for all the love, prayers and support. We truly couldn't have gotten this far without you guys to help keep our spirits up. It is so wonderful going to a church that loves GOD and loves his people. We have a doctors appt on Tuesday at UNC for our follow up. I am excited but nerves about the trip. I think everything is okay but you never know. He will also have to get his 6 months shot which I'm not looking forward to. He is behind on his shots so we are playing catch up. I will try to update you guys every two days with new information since we are home nothing is happening really new. If we have an emergency I will be sure to inform you guys. Please feel free to come see you. Take care and we love you all!

Thursday, January 8, 2004 7:55 AM CST

WELCOME HOME LITTLE ETHAN SCOTT MYERS!!!!

Yes finally we are HOME with my little man!!!! I haven't had time to update you guys because I have been so busy trying to get him home and everything settled. It is wonderful being home but there is alot of work to do with Ethan. I knew it would be a big job but it is alittle more than I thought. The home health agency isn't all it is cracked up to be!! They were to be here for 24hr the first 2 days then 16hr days until doctors decided different! Well I feel like Dorothy in the wizard of oz, WE ARE NOT IN UNC ANYMORE!! The nurse showed up 2 hours like the second day and yesterday we didn't have a nurse until night shift. I have really had a hard time with this because they had enough time to find home health nursing! That is why we were not home for Christmas. I told the director yesterday that YES, I can do everything you guys do for Ethan and really do it better but that isn't what you and the doctors agreed on. I had to train the nurse the first day because she didn't know what to do. That didn't make me feel real comfortable. I have been so busy with running back and forth to the hospital that I didn't realize how hard a time I was having with Ethan's sickness. I have really had 2 hard days trying to stay up beat. Ethan is really do well and adjusting to being home but I feel like I haven't been able to be his mom. My job is to take care of him, bath him, feed him, and give him his meds but it isn't that way. We take for granted having a healthy baby. Let me tell you to be glad to hold them, love them and do all the little things they need. Be glad for the ear aches, sore throats, runny noses, and cough. Be glad for the 1am, 5am feeds. So when I feel like being sad, depressed, upset or angry I just go in Ethan's room and thank GOD for his blessings. Ethan has truly made me more thankful for life and helping me to see don't take family and life for granted. I really don't know why GOD decided for Ethan to be disabled but he truly has a purpose! He has a plan for his life. Ethan has truly blessed alot of lives. His beautiful eyes and sweet little smile will capture your heart. Thanks for all the love, prayers, phone calls, emails and visits during his sickness. We can never tell you what that has meant to us. You are all truly great. Contiune to remember us as the whole family adjusted to being under one roof again. It felt funny being home 2 nights in a row with everyone home. Please pray each day Ethan continues to get stronger if that is GOD's will. Please come see us if you are well and haven't been around anyone sick. We would love to see you. The yard looks full all the time but usually it is just our cars, the nurse and maybe my mom. She is trying to come cook for us so my family will eat more than a ham sandwich. Which Ronnie really likes because I don't have time to cook. We have something to do with Ethan every hour. Take care and we love you!!

Friday, January 2, 2004 10:56 PM CST

HAPPY NEW YEAR EVERYONE!

We hope you all had a wonderful New Year! We were able to go out of town with Andrew and Ashelyn to Myrtle Beach to see the Carolina Opry. We really enjoyed the time away. The kids had a ball swimming and playing in the lazy river. Ethan is doing pretty well. He knows we are scheduled to go home on Monday so he is trying to act up. He has developed a fever and we are waiting on cultures to see if there is any infections. We all started laughing because everytime we talk about coming home he starts up. So now we call it going fishing. The plan is still on for the fishing trip monday. We have to go home on an ambulance. They are to be here at 1:00 pm to pick him up. The RT and nursing will meet us at the house. I have really started having a tough time with the whole thing of bringing him home. All of you who know me know I really don't show my emotions in front of people. Ronnie asked me tonight was I depressed or scared because he could tell something was wrong. I'm truly ready to bring him home to be with us but it is so scary. Ethan will be a 24 hr job and you have to stay on your toes with him because he depends on you to make sure he is able to breath. You can't freeze up. I'm really excited about meeting the nursing staff. They brought out the home health stuff today. Ethan's little room looks like a hosptial. There a boxes and machines everywhere. I would love for each of you to pray that God has picked the nurses for him and that he contiunes to give Ronnie and I the strength and patience as we adjust to him being home. Also pray for our kids. It will be hard on them trying to be quiet again for Ethan to sleep. I love each of you and thanks for all the wonderful emails. A couple we met from Duke little girl will undergo Heart surgery again on Tuesday. Please lift her up because this will be a hard day on that family. Her name is Little Lexie. That were truly wonderful Christian people who help Ronnie and I keep our spirits up. Take care and we love you guys! I hope you all will see the yellow bows and welcome home banner monday.

Friday, January 2, 2004 10:56 PM CST

Monday, December 29, 2003 6:38 PM CST

Hello Everyone!

Just wanted to let you all know we will not be going home this week. I am having a really rough day. I had my heart set on taking Ethan home Wednesday and PSA doesn't have the nursing lined up. I have tried to stay so up beat through all of this and keep a smile on my face even when I didn't want to. I have said from the very beginning didn't want to be bitter like alot of people are when GOD gives them a special needs baby. God gave us Ethan for a reason and he is truly a blessing to our family. Ethan is so happy. He just looks up and smiles at you all the time. It is like looking in the face of an angel. It has been a rough 9 months for our family because Ronnie and I have been torn between our kids. Andrew is to little to understand Ethan doesn't plan on being sick. Ethan doesn't know if we are here or not. It is just we want to spend as much time with him as possible. The nurses are truly wonderful and take such good care of him. I just get so upset because changing his diaper, bathing him, feeding him should be my job. He is my baby. Things like that get me down and the devil tries to discourage me more. I tell myself several times throughout the day that GOD is still in control. He hasn't let me down yet. He has been there for us since the very beginning and everytime we needed him he has been ON TIME!!!! Just pray for me that I can contiune to keep my faith and strength. Ethan is really doing great. He looks so good. I can't believe how big he is. I told someone at church yesterday he looks like a totally different baby. His little cheeks are so chubby. I love to squeeze them. He looks at me when I do like I wish you would get your hands off me. He just looks around a smiles all the time. They have gotten him to stay off his vent for 8 hours now. They tried today for 10 hours but he got tired. I am so proud of him. He is so strong and brave. He still has alot of secretions and lots more when he is on the trach collar. We really have to suction alot then. We are hoping to be able to go home on MONDAY. If we don't I think we are going to kidnap a few nurses here. I'm so ready to take him home. Thanks for all of you that contiune to follow Ethan's website. It really means alot to Ronnie and I to log and see what you have written to us. If you haven't yet please log on to the guestbook and sign in. Alot of you have asked about coming to see Ethan when he gets home. It will be okay as long as you are WELL. We may make everyone wear masks and gowns for his protection but would love for you to come visit. It is going to be hard on us to stay in since for 9 months we have run up and down hwy 40 daily so we will need some company. Take care and I will try to get some new pictures on soon. We love you guys!

Friday, December 26, 2003 1:14 PM CST

MERRY CHRISTMAS AND HAPPY NEW YEAR FROM THE MYERS FAMILY!

We hope you all had a very Merry Christmas! We had a wonderful one. Ethan is doing so good. Things were alittle different and more rushed for us this year but we really enjoyed being with our family. It was a very special one for our family because we truly have been blessed this year with Ethan. God had given us one of the most sweetest gifts of all. He is so full of love. Everyone who looks into those baby blues eyes heart is touched. If GOD only sent Ethan here on earth to accomplish one misson to share his love then he has truly done it. The doctors were telling Ronnie and I late Christmas Eve that Ethan has captured so many hearts at UNC. He said everyone who see him falls in love with him. One smile and look in his little eyes and he has you hooked. Santa was really busy because he had to come twice to see our family. He came on the 23rd to see Ashelyn, Crystal, and Grant. He left Andrew and Ethan a few things but told Andrew he would visit him again at the hosptial. Ashelyn had to be back home so early on Christmas Eve. Crystal and Grant went to see their Mom and we needed to be with Ethan on Christmas Eve so Santa just came early. We stayed in Ethan's room on Christmas Eve night. It was so neat. We had that ICU unit looking like Santa's workshop. Ronnie, Andrew and I slept on air mattress. It was a big thing to Andrew because he thought we were having a big pajama party. We got so tickled at Ethan because he wouldn't go to sleep. He was looking around like he knew something was going to happen. It was about 3:30am for he every went out for Santa to come. The hosptial truly made it nice for all the children and familys in the unit. They had some many toys. Lots of people give to the hosptial to purchase gifts for all the kids. Andrew got so much stuff. Ethan was really amazed by his Winnie the pooh. It dances and sings. He would look at it and smile then turn to look at us. He was so cute. He loves TV. He will lay there and watch movie after movie. Santa brought him a TV for his room since he will spend alot of time in there with the nurses. It will be so nice to be home with him. On Monday there will meet again with PSA to see if everything is lined up with the nurses. If so hopefully we will be home by WEDNESDAY OR THURSDAY! He is ready and we have finally completed all of our classes but CPR to be able to come home. They are working on his stroller today. They are having to build a shelf to put under the basket area to hold the machines. He will go home on the Vent/CPAP machine. They are trying really hard to have him on the VENT only at night. He will be on a trach collar during the day to give moisture if that works. He has done good so far. They have started bowless feds now. That is were he eats every three hours through a tube then at night I will put him back on his feeding pump. He has really handled the change great. Maybe in a few months he will be strong enough to try a swallow study again to see if he can drink anything by mouth. He is starting to try to hold his head alittle. He looks alot like a bobble doll. I'm so proud of how much he is able to do. He is up to 16 1/2 lbs and 28 inches long. It is amazing the difference in him now. He is so much stronger and more active. I can't wait for you all to see him. We would love for you all to come by to visit only if you are FLU AND COLD FREE!!!! We will not take him out alot because it will be a big job but also to all the colds have slowed down. It will be hard on Ronnie and I because we are both such GO Bestys to stay home so please come visit. It will be really different staying home since we really haven't stayed there much in 9 months. I will close for now because I know you are tried of reading but I truly hope you all had a wonderful Christmas and know how much we love each of you. Thanks for all the wonderful cards and words of encouragement they mean alot. I will do better this week about updating you guys. I was home sick and our computer there has a major problem. I tried to on Christmas Eve and yesterday and lost both of them. Hopefully you got this one!

Friday, December 19, 2003 10:28 PM CST

Hello Guys!

I'm truly sorry I haven't updated you guys in several days. Ethan is doing alot better. The fever has broken and all the cultures have came back negative. They were able to save the central line(broviac) thank GOD because if we lost it we couldn't get another one for awhile. Once they remove it they have to make sure the veins aren't infected. It is very important for Ethan to have the central line because he doesn't have any access veins available. He is almost impossible to get a IV in him. We were so glad they were able to treat the infection through the line. We finally got the news today that we WILL NOT be home for Christmas. It will be hard on us being away from our parents and family but we have so much to be thankful for. The doctors told me today they new how bad we wanted to be home for Christmas so we could lite his tree Christmas Eve. Ethan is ready and I think Ronnie and I are but the home health company doesn't have but one nurse for Ethan. We have to have three before we can go home so please start praying that GOD will send the right person for the job. The doctors don't like to send you home without 24 hour care for the first 2-3 days then 16 hour care 7 days a week. We met a family a couple months ago who had been here over 2 months waiting on there county to get nurses. It will be hard having to stay here for that reason. I truly hope we can be home the week after Christmas so we can have time home with the kids while school is out. Andrew is truly enjoying school being out. We have Ashelyn this weekend. She is so excited because Ronnie and I took her to get her ears pierced tonight. She has been wanting to do it for sometime now. I finally finished my HGTV at home. My neighbor Nicole and I have really worked hard moving the kids rooms around. We told Ronnie we were going to name our show "While you had the FLU." It was alot bigger job than I thought. It seems good to have Andrew back down stairs so I don't have to run up and down hundred times a day. It turned out very well though. Ashelyn loved her room. I hope you all have finished your shopping because time is running out on you. It is going to be crazy trying to get our stuff up here with Andrew. It will be very interesting to say the least. Ronnie, Andrew and I will stay in the room with Ethan Christmas eve night and Santa will come see the boys here. Crystal will be going to Viringia to see her Mom and Dad. Grant is with his dad and Ashelyn will be with her Mom. Things will truly be different for us. I think I have truly come to realize through all this how important Family and Friends are. We take so much for granted. I was talking to someone the other day that couldn't believe how up beat I was with everything going on. I told her I had two choices 1.) I could be angry, mad at the world, cry all the time or 2.) I could try to take the situation God had placed us in a try to make the best of it. I truly try to do that. Ethan is such a special baby. All babies are truly wonderful little miracles but Ethan has touched so many lives over the last 8 and 1/2 months. Everyone who meets him leaves with a smile on there face. He has truly taught me life is a precious gift from GOD. Last night the nurse who was taking care of him said she was giving him his bath and he was looking up at her smiling and she said Ethan, I LOVE YOU. She told Ronnie I think I getting attached. It is so hard not to when he looks up at you with those baby blue eyes and gives you that smile. I truly want to say thanks to all of you for your prayers most of all, phone calls, visits, and your friendship. We love you all. If you haven't finished shopping you better hurry up. You only have 6 days left.

Tuesday, December 16, 2003 6:45 PM CST

Hello Everyone!

Well Ethan is on the roller coaster ride again. I think he over heard the doctors telling us we could go home on thursday so he decided it was time to act up again. The last two days have been alittle crazy around here. Ethan has delevoped a really high fever 105 and they are having to pack him in ice to try to break it. They finally got the cultures back and he has a staph infections in his trach and a bacteria infection in his broviac and blood stream called enterococcis spelling maybe off. They have started him on new antiobotic today. He is sleeping alot which is good because aleast he is able to rest. When awake he looks really weak eyed. He isn't smiling at all. The doctors said depending on the cultures tomorrow will determine how long they will treat him 7, 10 or 12 days. I really don't think we will be home for Christmas now. We were all so excited about being home with him. It will be hard on us but we will manage. We have so much to be thankful for so we will celebrate here. I finally finished changing the boy's rooms around. I still have to finish Ashelyn's room. It will be so much easier having Andrew downstairs again especially when Ethan comes home. I have enough to do without running up and down stairs. Thanks Joey and Nicole for helping me. I love you guys. I really don't know what we would have done without you guys. Ronnie is feeling better. Hopefully he stayed away long enough that nobody else in our family will get it. Andrew is getting so excited that he only has 2 days left before school is out. We all will be glad for a break. I will love not having to pull him here and there for 2 weeks. I hope we will get Ethan home before he goes back to school so we can have some family time. I had my training today on the vent for home. You all need to pray that I learn how to work it. It was so funny because I was having a really bad day with Ethan's fever not breaking and the lady who was teaching me was about 20 steps ahead of me. I really don't remember but about 2 things she said. The recreational theraphy lady was in and got tickled at me because she could tell I was lost. I feel comfortable with everything but the vent. I told our head pulm dr today that changing the trach wasn't as bad as I thought it would be. We are having to buy a new stroller for Ethan because he will have 5 machines to take with him. His stroller we have is a single and I have to buy a double. The OT and PT thought I was curious because they said they were going to screw a piece of plywood to the bottom of the stroller. I about died. I told them I didn't want to walk around looking like a bag lady. They both started laughing at me. They assured me Ethan would look good so pray they don't fix his stroller tacky. I really didn't want a wheelchair yet for 2 reason. 1.) I didn't want to call attention to Ethan that he is handicap and people stare at him anymore than they will or 2.) They cost alot of money for him to grow out of in a few months. I just think right now this will be better for Ethan. We also got the DNA report back today. His Nemaline Myopathy was a spordiac case. He had a mutation in his gene. It didn't come from neither Ronnie or Me. That was really a blessing because for all of you who don't know much about his NM disease Ronnie and I could be a carrier or we could have it and not be affected yet. It comes in 3 stages. Infant form which is the most fatal, childhood and adulthood which you would usally go to some type of machine to breath or maybe a wheelchair. We were happy because Andrew or Ronnie's girls shouldn't every be affected. Thank you GOD for that. It is hard enough to have Ethan with NM but we talk to alot of NM parents who have more than one child with this disease. One lady had 2 children die with NM so we still have alot to be thankful for. Thanks again for all your love and prayers. We love you guys alot.

Sunday, December 14, 2003 2:31 PM CST

Hello Guys!

Hope you all are staying dry from the rain. It is cold and ugly outside here. Andrew and I said last night because the weather was so bad. We are going home in just alittle while. Ethan has had a good day besides his face is alittle swollen and the broviac looks red. They did some cultures to make sure he doesn't have any infection in the line. We are hoping not because they will have to pull that one out. He will have to be put back to sleep to insert one in again. We should know more tomorrow hopefully on what is causing the problem. I saw our pulm dr upstairs earlier and she said that his chest xray was the best one they have seen in awhile. They are still planning for us to go home next week unless something grows from the cultures or depending on if our family is well. Ronnie is still sick and is staying at the lake. It is hard on him because he wants to be here to see Ethan but we don't won't anyone to get the flu either. I was able to hold Ethan today. It feels so good to be able to pick him up again. I changed his trach today too. It has to be changed every week and the ties have to be changed everyday. It went very well. He is really easy to work with because he is so laid back. Crystal is coming to stay with Ethan so they can teach her how to help with the trach. They have told us it is very important for everyone that will be involved with Ethan know what to do. Crystal will be a big help at home if she is able to feel comfortable doing the things he needs. Thanks Bobbie and Jason for coming up to see us today. Andrew enjoyed the basket of goodies too. He asked the nurses for MILK as soon as we came back in the unit. Take care everyone and WE LOVE YOU!!!

Sunday, December 14, 2003 2:31 PM CST

Saturday, December 13, 2003 10:52 PM CST

Hello Everyone!

Sorry I'm so late on your update. I have been home getting lots of things ready for Ethan's big day! I can't wait to get home. I have spent the last few days changing the children's bedrooms around at home. I haven't finished yet. Andrew's room has been upstairs for the last 3 years because Grant lived with us. His Dad has move back and he is staying with him now so Andrew is scared to sleep upstairs. Things will have been so crazy for us that I wanted to try and get him back in his bed. He has had to sleep with us so much that this will be a big adjustment for him. Thanks Nicole for helping me. I still have alot to get done but hopeful Ronnie will be able to help soon. Oh Yeah! He has the FLU. He is staying away from us. He went to the lake to stay. We don't wont anyone else to get sick or the germs in the house. He got sick yesterday. Back to my Little Man. He had a really good day. The lung is still improving and things seem to be on for maybe coming home on Thursday. I can't wait. It will be the best Birthday and Christmas I have every had. I was able to hold him tonight. He was so sweet. Those beautiful baby blues just look up at you like he thinks you are wonderful. I haven't been holding him because I feel I make his secretion move more and he has a harder time breathing. Tonight we didn't have to suction him the whole time I held him. It felt so wonderful having him in my arms. He is getting so big. I was looking at some old pictures today at home and it is so amazing how much different he looks. I tried to send everyone I know that emails us a Christmas card with Ethan's picture in it. If you didn't get one by next Wed or Thurs and you would like one please email me. If I don't know you personally email your address to me please. I would love for each one of you to have a picture of him. It is a small way to say thanks for you taking the time to check on him daily and encourage us. If you haven't we would love for you to sign the guestbook. We are keeping it for Ethan to hopefully one day be able to read and see all the people that loved and cared for him. Please contiune to remember us as the days draw closer to going home. Thanks for everything. We love you all.

Friday, December 12, 2003 1:23 PM CST

Hello Guys!

Just wanted to update everyone to let you know things are going alot better here. The doctors were really pleased with the chest xray today. They had started using the cough assist machine yesterday I think. I haven't been able to come since tuesday because I wasn't feeling well and we didn't won't Ethan to caught anything else. There is so much going around here. Colds, flus, rsv, and adenovirus. I will be so glad to get him away from here. It is funny people say when you get him home keep him away from everybody. We will have to be really careful but we will be coming to the clinic once a week and be putting him a alot greater risk of getting sick. Almost every room here has contact precautions on them. (you have to wear a gown, mask, gloves). It is hard to keep everyone well with the nurses having to care for so many patients and they go in and out of the rooms. Ethan is acting more like himself again today. He was smiling and playing with his toy. They have finally gotten his machine worked out and here. They changed him over at lunch and things went really well. He did a great job. It is so scaring knowing we are getting closer to going home. Will we be able to know how to do everything is what I keep asking myself. The nurses and doctors are wonderful about reassuring us things will be fine. I know we have to stay on our toes because Ethan depends on us to breath. I have been so strong up until this point I think but as the time draws closer I'm really starting to worry. What if we freeze up? What if we can't get the trach back in? There are so many things going through my mind. I know this is probably how every parent that leaves here feels. I was talking to some parents today about how thankful we are about our little ones because you see so much sickness here. Everywhere you look it looks like someone else has it alot harder than you do. As I was driving up today I thought about how hard it is for me to watch Ethan have to suffer. How I wish I could take his place and then I thought of Mary, JESUS MOTHER. She had to watch her son suffer alot more than I have yet she still went on. Things like that is what makes me try to stay up beat and postive about Ethan situation. Christmas time is my favorite time of the year. This year I look at Christmas in a totally different way. I have so much to be thankful for. We may be able to go home next week WED or THURS if things contiune to improve. If we don't then we will still have Christmas right here in his room. Thanks for all your prayers. We love you guys!

Wednesday, December 10, 2003 6:13 PM CST

Hello Everyone!

Just wanted to update you guys on Ethan. Things are going fairly well around here. He had a good day yesterday and we changed the first trach. It went really well I think for it to be our first time. Ronnie pulled the old trach out and I put the new one in. Ethan did very well. He just laid there looking so sweet up at us. The nurse and RT were in to help us if we weren't able to do it. It wasn't as bad as I thought. The site looks pretty bad but it would to anyone if you saw a hole in your little ones throat. He still has the air leak around the trach so we are able to hear him coo and cry. It is so cute to hear him make sounds. The doctors said they will try to keep the leak around it so we can contiune to hear him as long as it doesn't get bigger. The lower left lung has been down for a couple of days so today they started him back on the cough assist machine. We have finally gotten everything worked out with the home vent machine and the nursing. They will be coming to our house tomorrow to test run the vent to make sure it will work at our house. She will then take the machine to the hosptial so we can hook it up to him to set the machine to Ethan's needs. I don't know if we will be home for Chirstmas or not. I really don't think we will because he is still so full of secretion. Ronnie was to talk to the doctor today to get her feeling on things. If we aren't home by next friday then it will probably be the first of the year before we come home. Ronnie and I are scared to try to come home during the holidays. I wasn't able to go today because I have a terrible sore throat. We decided it would be better for me to stay home. Hopefully things will be better tomorrow so I can go. It is so hard for me to stay at home and not see him. I know the nurses are taking wonderful care of him but I feel so quilty when I'm not there. Andrew has enjoyed having me home. He is counting the days until school is out so he can be home with us. It will seem good not having to pull him around here and there to. Well I have to go and help Andrew with his homework. Take care and WE LOVE YOU ALL. Good night Ronnie, we love you! Give EMAN a big kiss for me and Drewdrop. See you tomorrow. To all my UNC Nurses come to Ethan's room to get your picture of him.

Monday, December 8, 2003 5:17 PM CST

Hello Everyone!

Hope everyone is doing well. Things are going pretty good here. Ethan has come in contact with the adenovirus. It is an upper resp. infection. I think he probably got it from a nurse that was sick here the other day. I was alittle upset but things happen. He really looks great. They have decided until he is totally cleared from the virus not to try the trach collar on him. He has so many secretions that we are always suctioning his nose and mouth. It is very thick and hard to get out. Hopefully it will start to improve over the next few days. We are still hopeful to be home for CHRISTMAS! If things go well the rest of the week maybe by next thursday we can go home. If not by then it will be after christmas. Ronnie and I decided if we haven't gone home by then to stay until after christmas. We are afraid things will not be in place or the nurses decided not to show up. The trach has a leak around it so we are able to hear Ethan make some sounds around it. It is so cute. He will just laugh at Andrew. Ronnie heard him cry today. They were going to go up a size on the trach but the doctors decided to leave it alone because the leak will not hurt him. I like the idea that we can hear him. Andrew was so excited to hear him laugh. I was tapeing him and he said Mommy he just made his first words. We were able to go to church yesterday. It was so good to see everyone. We really needed it. We have really missed being able to go to church. We are hoping the nurse will be able to stay with Ethan on Sunday so that we can go together once he comes home. Well I have to close Andrew is ready to go out and play. Take care and WE LOVE YOU GUYS!

Friday, December 5, 2003 2:52 PM CST

Hey guys!

We are having a fairly good day. Ethan decided I had been bragging to much so he wanted to act up alittle. They think he may have the flu. He is alittle fussy and having alot of loose stools. He wasn't able to stay on the trach collar today but about 45 minutes because he drop his O2s and heart rate drop. The chest xray looked like the left lung was alittle down in the lower part. They went up on the pressure on the cpap machine. We are just going to let him rest the of the day. Hopefully tomorrow he will strong enough again. Yesterday we heard him coo over the trach. Andrew was here and started playing pick-a-boo. He thought that was so funny. It was so good to see him smile so much. Today he has smiled alittle but not like yesterday. The machine hasn't gotten here yet that will go home with us. Maybe later today the RT guys said. I'm going to try to go home alittle later today and come back tonight. I need to get a few things ready for him when he gets home. Take care and I will update you guys tomorrow.

Thursday, December 4, 2003 4:58 PM CST

Hello Everyone!

Hope you all are keeping warm. It is freezing cold here. This morning we had alittle ice on the vechile but nothing bad. Ethan has had a wonderful day. He has been on the trach collar for 2 hours 2 different times today and has done great. They tested him for RSV because his secretions have become very thick and sticky. Thank God is was negative. They have several babies in the unit with RSV so I was alittle nerves. They think the secretion are just thick do to the trach being so new. It is so amazing the improvement in him since the surgery. He finally acts like he really feels good and is happy. He just smiles all the time. I told one of his doctors today that he finally looks healthly. He has gained some more weight. He was alittle over 15lbs. One of the Moms I met came to see us today after taking her baby to clinic. She really couldn't believe how different Ethan looks. He has grown so much and filling out alot too. Tomorrow we will get his machine that we will go home with. They will start using it to help us learn everything about this type of machine. It should be here after lunch. They have finally got all our home health things set up for discharge. BCBS and the hosptial have went back and forth all day but finally BCBS agreed to most of the things the doctors wanted. They said that maybe by next week Ronnie and I will be comfortably and we be able to go home. Ethan will be ready but we have alot to learn. We will have to do alot of training next week. I told them today that I had to feel really comfortable before I even thought about going home. I'm really ready to be able to be home for awhile but I want Ronnie and myself truly prepared for all of Ethan's needs. It will be a 24 hour job. The home health nurses will be with us for 24 hours the first 3 days. Then 16 hours a day. It will be good to have the help but also it will be hard because we will have no privacy anymore. Someone will always be at our house. But that is okay with us as long as they are good to our little man. We have alot of things to get ready for him at home so things will be busy the next week. I think it will be more like DEC 15-17 week. My birthday is the 15 so that would be the best birthday present every. Thanks for all the prayers as always. We love you guys! I will update you tomorrow.

Thursday, December 4, 2003 4:58 PM CST

Wednesday, December 3, 2003 11:19 AM CST

Hello Guys!

First of all I am truly sorry I haven't emailed you guys in a couple of days on Little Man. We hope you all had a wonderful Thanksgiving. Things have been going great for Ethan since Sunday night. They have totally woke him up. He is still being tapered off the meds for pain and sedation. They have to do that so he doesn't go in any withdraw. So far we haven't seen any signs of that. He looks WONDERFUL! It is so amazing how much of a trooper God has given to us. Everyday he looks so much better. The swelling has almost gone completely down. If he lays on one side for a very long time it gets alittle puffy. The nurses are really good about keeping him turned. They have been able to totally take him of the vent. Thank you GOD for answered prayers. It is so amazing to watch a miracle take place before my eyes everyday. He is only on Cpap machine now. They started yesterday doing trails of off Cpap with a Trach collar (this is just oxygen and mist) going through the Trach for 1 hour on 3 times a day. He did great. Today, they started 2 hours on the collar with 3 hours on cpap to let him rest. So far he has done great. The doctors seem to be real please with how well he is doing. The ENT will come by later today and change the first trach and trach ties. I was able to suction his trach yesterday. It wasn't as bad to me as doing it like I have been a home already. We have been having to suction his mouth and nose already. The only thing I'm really nerves about is changing the trach. The nurses keep telling me that we will do great because we already have to do so much with him anyhow. I don't think we will change one until next week. We will be able to do the trach ties. They have to be changed everyday. Trach ties are what holds the trach in place. The trach is under his neck and is what he totally breaths by. Some of you have asked what it looks like. When he is off everything it looks like the thing moms put on a babies shoe to keep the shoe strings tied. To look at him now and see how much easier he is able to breath and how much happier he is makes this so much easier for us to bear. Ethan was able to smile before but it took alot of work. Now he just looks up at us and smiles all the time. It is so sweet the way he looks at Andrew and smile at him while he is talking to him and acting crazy. I told Andrew last night Ethan is probably saying (OH NO! This is what I have to go home and watch all the time). Andrew started laughing. He is so full of energy. They are going to do another Bronchoscope today too. This one he doesn't have to be put to sleep because he already has a breathing tube in. They will be able to do it in the PICU unit. They are going to check to see if the pnem. has cleared up and how well the lung is working. It hasn't been down since Saturday. That is truly an answered prayer. Ethan is starting to change so much he really looks different now. Lots of you won't believe how big he has gotten. He was 15lbs. His hair is really starting to come in more and is dark. It is funny because he looks alot like my nephew Austin. We pick on Austin and call him SKY 5 because he loves to talk. I told Austin on Sunday I didn't know if we could handle it if Ethan loved to talk as much as him. I will take some pictures of him today and get them on the web for you soon! Michelle! Did you get you Christmas tree? Erika, Misti, Angela and Kristi, I can't wait to see you guys next week and spend time with you all. I love you guys so much. For all of you who don't know them they are my friends since I was a child. We have stayed in touch with each other and get together once a month to go out to eat. Friendship is something we take for granted but when things happen in life and you need someone you can always count on it is good to have TRUE FRIENDS!! I thank GOD for all of you everyday. It means more than Ronnie or I could every say to you that log on Ethan's website and see all that have emailed us. We love to read what you have written to us. Your words of encouragement, phone calls, cards, visits and prayers is what helps us keep going. Joey and Nicole, we really enjoyed eating and spending time with you guys! Thanks for taking Crystal home. I hope the ride wasn't to bad.HAHA. Thanks for everything. We love you all!! Happy Holidays.

Sunday, November 30, 2003 4:58 PM CST

Hello Everyone

We have had a wonderful day. They were able to take him back off the vent again today and put him back on cpap. He is doing really well with it. They decreased the meds more and he has been awake alot. He looks great. The swelling is starting to go down more everyday. He was looking around today and was smiling so much. He would just smile like he wanted to laugh at us while we were talking to him. The trach is scheduled to be changed on Tuesday. I am so excited about that so I will be able to hold him. He will get his synagis shot tonight. We were able to go home for awhile and spend sometime with my family. Today is my parents birthday. We ate supper with my brother Lee and his wife Connie. We really enjoyed being able to see everyone. Well take care and I will update you tomorrow. We love you!

Saturday, November 29, 2003 9:33 PM CST

Hello Guys!

Just wanted to update you all and let you know we have had a wonderful day. They were able to take him back off the vent today and put him on cpap. They were only going to keep him on it for about 4 hours to see how he would do. He has done so well that they decided to keep him on it unless he starts to tire out. They have also cut back on the sedation and pain meds today to try and wake him up. So far he has only been awake a few minutes then goes back to sleep. He did stay awake a little while to watch Barney's Christmas. The swelling has gone down some. He is still puffy but not as bad as yesterday. They still have his little arms tied down to make sure he doesn't pull the trach out. We think Monday or Tuesday will be the first trach change and after that he shouldn't have to be sedated or tied down anymore. I will be so glad when that is over so I can hold him again. It has been hard on me this time because I haven't been able to hold him. I usually can after surgery but this time we couldn't. It has been alot harder this time because I just want to pick him up and kiss his little face. It is hard to get to him because he has so many tubes and wires connected to him. I can't hardly get close enough to kiss him. We have decorated his little room for Christmas. It looks so cute. We have a tree up with his first oraments on it, snowmen, santa, candy canes, it is precious. One of the nurses told us we couldn't turn on the lights. It was okay because all I wanted was the tree. Yesterday when we came in another nurse had the tree on and said she didn't have a problem with it unless the head of the department said something. We have alittle manager scence up and little snowmen, santas, candy canes all over the walls. It isn't like being home but aleast I was able to do somethings. We put up a tree at the Ronald Mcdonald house for Andrew. It is his tree from home. Santa will have to come see him there this year more than likely. He is so funny because he wants to make sure we leave a note to let Santa know we are at the Ronald Mcdonald house and Ethan is at UNC. I told him several times not to worry about it because Santa would be sure he finds us. He was so cute the other day. I got a huge Santa to put on Ethan's wall and taped a Santa's list to his hand. It has Ethan's and all our family's names, doctors, nurses and all the kids at UNC on it. Andrew was excited and said I told you Mommy my name was on Santa's list, I started laughing and said "That's the naugthy list", his little eyes got really big and he said no its not because Ethan isn't naughty. He really loves his little brother. I'm so proud of how well he is dealing with all this. It is alot for him to go through and not really understand. Thanks Teresa and Cassie for coming up today. We really enjoyed the time with you guys and the food was great. Andrew is eating the rest of the casserole right now. He loved it. Tonight he said Mommy please ask Mrs Teresa how to cook that for me when we ever get to go home. Thanks for all you love, prayers and support. We love you!
Ashley, thanks for the little christmas outfit. I can't wait to next week to dress him again. Michelle, thanks for the little prayer blanket. He will love that we he wakes up and can play with it. You guys will never know what your friendship means to us. It means alot as a parent to know you care about our baby not just coming in and doing your job. We have built a friendship that will last a lifetime. We love each of you so much. Thanks for all you do for Ethan. One day he will be able to tell you all Thanks for all you done to help him get well.

Thursday, November 27, 2003 8:24 PM CST

HAPPY THANKSGIVING!!!

We hope you all have had a wonderful THANSGIVING. We have so many things to be thankful for. This morning while getting ready at Ronald Mcdonald to come over Andrew and I were talking about things he was thankful for. The first thing he said was Jesus, he help Eman be able to go through surgery. I was so proud of him. God has really been good to our family this year. Lots of people wouldn't consider this trial to be a good thing to go through. I can truly say now after going through this I have learned alot. I have realized that I have taken life for granted. I didn't Thank God as often as I should for the wonderful things he has blessed me with. I have a wonderful family, friends, and most of all I have my health. I told someone the other day I really was so ashamed of how much I have taken for granted. Ethan has truly been a blessing to our family. I thought when I was expecting him how could I ever love another child as much as Andrew. It is amazing to see how God makes your heart so big for each one of your children. Everyday that we have with him is truly a blessing from God! Ethan's beautiful smile has touched so many people. Our family, our church, the doctors, the nurses, and more people than I will every know about. He has the sweetest little spirit about him. This thanksgiving was alot different for me. This was the first year I have every been away from my family. We had lunch provided by the RED HOT BLUE group. It wasn't my mom's collards and turkey but I was thankful for something other than Wendy's. Ethan has had a fairly good day. His left lower lung went down about mid morning and the upper part closed up after lunch. They had taken him off the vent and put him on the cpap support. The lung didn't come up after doing a few things so they had to put him back on the vent. The doctors think it could be from the pneum in the left lung causing the problem because he has only been on the antibotics 48 hours that treat the kind of infection he has. After they put him back on the vent the lung reinflated. I really feel we will have to go home with some type of pressure support. VENT, CPAP, or BIPAP. He has slept all day. They are trying to keep him under because they don't want him to move and pull the trach out. This afternoon he woke up and started moving to much and they gave him his meds so he decided he wouldn't breath for a few seconds but nothing bad happen. They bagged him and got his resp rate back quick. The doctor in the PICU unit said Ethan really likes to keep us on our toes and makes us work for our money. He is still really swollen. His little eyes are so puffy. He still looks like a little chinese baby. They were able to take the cathether out this afternoon because the kidneys have worked fine all day. His art line started leaking tonight so they pulled it out and didn't put another one in. They said they really didn't have to have that right now. Thanks Charity and Johanna for coming up today and bringing us real Sampson County Food. We really enjoyed it. Grant loved the ribs. Thanks Connie and Mom for giving Crystal the leftovers to bring up to us. We will enjoy them. Well I have to close for now. Take care and We love you!

Wednesday, November 26, 2003 2:44 PM CST

Hello Everyone!

First of all to say thank you to everyone for all the prayers that went up for Ethan and our family today. Things went very well. The surgery wasn't as long as the doctors thought it would and said he did very well. They all have commented on what a little fighter we have on our hands. Things for the next week are critical for him. The airway has to be really protected and make sure he doesn't get any infections.They will also try to keep him calm and still as possible. The doctors can't believe how awake he is. They have him on alot of high powered drugs and he still wants to stay awake to keep up with whats going on. They finally added a 3rd drug to put him to sleep so he could rest. He looks good for what all he has been through the last couple of days but is really swollen. His whole body is full of fluid but his little face is so full that he looks like a little chinese baby. His kidneys aren't giving enough out put so they put in a catheter. If it doesn't get better in a couple of days they will do a CT scan on the kidneys. The ENT doctor said also that she really thought after Ethan healed that the trach will be the best thing for him. She thought with him beginning well would help him become stronger. Just as we know you will contiune to lift him up. Take care and we love you! Happy Thanksgiving

Tuesday, November 25, 2003 8:57 PM CST

Hello Everyone!

Where do I begin. It has been probably the toughest day we have been through yet. We left the hospital last night well this morning around 4 am and went to the Roland McDonald House to spend the night. We both slept pretty well and around 9 we called to check on him. The nurse said he was having a really good morning and RT was in doing chest pt and his breathing treatment. We got up and started getting ready. Around 10:15 am the doctor from PICU called and said we needed to come to the hospital that Ethan had just coded. I can't begin to explain all the fear I started to experience. It was like we had come so far and finally going to get the trach and maybe now he wasn't even going to make it. I was in the middle of my shower so Ronnie left and came to the hosptial. By the time he got here they had him stable and the vent put in. They were trying to get 2 new central lines in. They wanted 1 for a true heart rate and one in case of emergency. They are having to use them all now. He has 7 IV's going to him with different meds. 2 meds to put him to sleep which isn't working. He has been awake since around 2 today. The nurses have increased the meds several times to try to help him fall asleep but he hasn't yet. The others are antibotics and fluids. He had to get blood this afternoon because his hemoglobin was to low. He has really done well with the trach and really doesn't seem to mind it at all. They had to tie his hands down because he was wanting to suck his thumb but we were afraid he would pull the trach out. They did a EEG and EKG but we haven't heard back from them yet. The doctors think what happened was during chest pt they moved some secretions that blocked the airway so it made it hard for him to breath and his heart stopped. It didn't take them long to responsed so the doctor felt very good about everything. The pulm. doctor came in to see us tonight and we were talking about conversations we had a few months back about Ethan would tell us when it was time for the trach. Well today he did. I feel so much better about it now. If we had a trach today maybe he wouldn't have coded. That doesn't mean tomorrow I won't be a basket case. I'm still scared, worried and really nerves about everything but aleast I know Ethan really needs it. It is amazing to see him now. He seems stronger because he isn't having to work hard to breath and both lungs are up and working well. I have said I feel we are at the best hospital around and after today I know for sure. Everyone was wonderful to us and very caring. Thanks to all the wonderful nurses from all the floors and RT to being there for us. You are truly our family now. We love you all! Michelle, I'm glad you weren't working today because you would haven't made it through the rest of you shift. No you would but probably with alot of tears. Gina and Susan thanks for being there for me when I came up. You guys are what I needed. Ma Dellie, you are the best RT yet! Your little puppy loves you. To everyone who came up today, thanks for all the support. We really needed you guys today. Tomorrow is the BIG DAY for Little Man! We are scheduled to go out at 9:45 am to have the trach. It will be about 2 & 1/2 hours before we are able to see him. Please pray hard as I know you all will that he stays strong and doesn't have alot of pain with it. He is truly a little fighter and I know God hears all prays but as his parents we want what is best for Ethan. Our pray will be that whatever his will is that he gives us the grace, strength and faith to face it. Please remember all our kids tomorrow because this surgery doesn't just affect us it affects our whole family. Take care and I will post you tomorrow as soon as I know more. We love you all.

Monday, November 24, 2003 10:46 AM CST

Hi Guys!

Sorry I haven't updated you in awhile but things have been alittle busy around here trying to get everything ready for Ethan's surgery on Wednesday. It is scheduled for the afternoon but if the doctors can get him in tomorrow they would like to move it up. I don't really like it because all you who know me know how I like to have everything planned out and ready. I would love to have one hold day to hold him without nurses or doctors coming in every 5 to 10 minutes messing with us. I know it is their job but as the time draws closer I want it to be time for family and love ones to be with him. I will only get to hold him today, tomorrow and alittle while on Wednesday before they take him out to the OR. Then it will be aleast a week before I can hold him because he will be back on a vent. It is going to be so hard on all of us seeing him back in the medicated coma and on the vent. It is so hard to walk down the halls in the hosptial and understand while little children have to suffer. With the holidays coming up I'm having a harder time dealing with it. I know all you asked Ronnie how I'm really doing and he says fine I think. I'm not one for really showing my emotions. I have my times everyday where I cry and get upset that we are in this trial but usually I'm by myself. It is hard for Ronnie because he shows his emotions well and he really would love for me to show mine too. He told my aunt from AZ I didn't cry in front of him but if I where mind I didn't have a problem letting him see that side. Just as you have been please contiune to pray for our family over the next for weeks as we adjust to all the new things. Several of the people we met here where talking about how it affects the whole family and it does. It isn't just the parents and sick child but also the brothers and sisters at home. They are having to share their mommy and daddy more than they really want to. We tried to talk to Andrew and Ashelyn saturday night about the surgery. Andrew is having a really hard time because I told them we wouldn't hear Ethan cry anymore or make cute little baby sounds like most babies do. I told them Ethan would talk to us with his beautiful baby blue eyes and Andrew got really upset and mad. It is so hard to explain to 11 and 7 year old about things when you really don't understand them yourself. We have tried to be as honest with them about Ethan's sickness as we can without really making them be upset all the time. We told both of them yesterday to enjoy him as much time with hime because if God decided to take him home they would have some wonderful memories. We were eating supper friday night and Andrew started talking about if Jesus takes Ethan to heaven can I write him a poem. He started telling us a the table what he was going to say in it and Ronnie and I lost it. It seems so unfair for a little child to have to think about things like that. I told someone yesterday I don't know that a 12 years old I talked about heaven as much as Andrew does. The questions he ask us are so hard to explain and talk about. I just pray that God will contiune to give us the grace, stength, patience, and peace to get through this too. He has thus far. Take care and I will update you tomorrow!
We love you all!

Thursday, November 20, 2003 9:34 PM CST

Hello Guys!

Sorry I didn't update you yesterday but as most of you know my Grandmother passed away and her funeral was yesterday. I have tried to be strong through all of this and did very well at the funeral home but yesterday was really hard on me. She was my HERO!! Today has been an okay day. I have had my times. For all of you who know me know how hard it is for me to show my feelings. I keep them to my self unless I'm mad then Ronnie says I will let the world know. My aunt from AZ came back up with us last night and Ronnie was telling her that he probably could count on one hand the times he has saw me cry. It was funny because today our Dr. came in and we were dicussing Ethan's condition and I got upset. After she left he said I told a story you do let go and cry sometimes. Yesterday Ethan didn't really have a good day. His CO2 were back up again. Today they are back down to were they can handle. They still aren't the best but aleast they are 75 not 90. Dr. Henry said today the trach was going to happen this trip. So talking to her about it I got alittle upset. It is getting so hard on us because Andrew is really starting to have a hard time with us having to be gone so much. We try to take turns spending the night at home but when Ethan isn't doing as well we hate to leave each other up here alone. With the holidays coming up it makes it hard because we want be able to spend it with our family like we usually do. The surgery probably will not take place next tuesday like we had hoped. It will probably be the following tuesday. It will really be tough for us to be home for Christmas which will be rough for Andrew and Ashelyn to understand. I just hope and pray he is strong enough to go through the surgery. I love him so much and we as parents truly take our healthy kids for granted. Today they had the NC CHILDREN'S PROMISE RADIOTHON. It has been a sucess so far. They had children from hosptial go down and tell their story on the radio. If you have been listening to the radio today and you heard it you had to be touched. As hard as it is for us there are so many people here who have it alot worse than we do. To hear the children 2 and up get on the radio and tell their story would break your heart. They are so STRONG AND BRAVE!! Ronnie and I were on tonight and told Ethan's story. It was hard to talk on the radio knowing 1000 of people were hearing you but if the money comes in an helps the kids then it was worth it all. Thank you Pat, Kim, Joey and Nicole for coming yesterday to support me. It really meant alot. We love you all! You are the greatest friends ever! Joey and Nicole thanks alot for all you do for our family. You didn't know when you moved in our neighborhood you would have to take care of us that much! I know we don't tell you all enough how much we truly appericate all your emails, prayers, visit and phone calls but we truly do. Your who truly helps us get through this knowing we have friends out there who truly care. I would love for all of you to please take time to sign the guestbook it means alot just knowing you looked at the site if you don't know what to write. Take care and we love you!!

Wednesday, November 19, 2003 0:08 AM CST

Hello Guys!

Sorry I didn't update you guys yesterday but I have been back and forth home and to the hosptial to see Ethan. We decided not to the trach yesterday because of the death of my Grandmother. Our head doctor also wanted to try the cough assist machine 1 more week to see if the lung contiune to improve. Well that didn't last long. They repeated to chest xray today and the lung didn't look as well and his CO2 were back up again. We didn't get a chance to see our doctor before leaving for my Grandmother's service tonight. A resident from ENT (trach doctors) came in and said they wanted to reschedule the trach for next Tuesday but didn't think it could happen because of Thanksgiving. So I will have to see tomorrow what they decided. Our doctor said we mayn't have it now but we would have to do it at some point. She didn't think the cough assist would contiune to maintain him without doing the trach. Grandmother's service went well. She was beautiful. I told Ronnie on the way home how much she looked like an angel lying there. It is so hard to believe she lived here on this earth for 95 years. I have so many wonderful memories of her. I stayed with her as a child while my mother worked and we were really close. I thank GOD for allowing us to have her all those years to spend together. It is so amazing how much grace God gives us. I thought I wouldn't be able to handle this at this point in my life but God has contiuned to give me the strentgh, grace and faith to go on. Thank you all for the phone calls and prayers during this time. We love you and I will update you tomorrow on Ethan. Take Care!!! Ronnie call me and let me know if you got back safe. Good Night and I LOVE YOU LOTS!!! HUGS AND KISSES!!!!!!!!!!!!

Sunday, November 16, 2003 11:32 PM CST

Hi Everyone!

Sorry it is so late on Ethan's update today. We had company which was wonderful. My Uncle and Aunt from AZ came up and brought my Mom. My childhood friend Erika and her husband came too. It made the day go by alittle faster. Ethan had a really good day. The doctors didn't order a chest xray this morning so I don't really know if the lung has change or not. It will be tomorrow morning before they do one and a new blood gas. He has had so many test that we have to decided how important and xray is. Since he started coming to UNC back in June they have done 44 xrays. Not including all the other test they have done. I can't wait to see our doctor tomorrow to find out what she thinks about Ethan's improvement. I thank God everyday for him and the miracles I see happen right before my eyes. My uncle and aunt were talking about how good Ethan looks. To look at him you would never know he was sick. I guess that shows you can't truly tell how someone is doing by their outside. I rode home with my Mom and family tongiht. When we got to my house we got the call my Grandmother had passed away. I can thank God she had a wonderful life and taught me alot of things I will never forget. BUT the MOST IMPORTANT THING IS I KNOW WHERE SHE WILL SPEND ENTERNITY!! It will be hard for me over the next several days as we face the plans with her and trying to go back and forth to the hospital with Ethan. Then if they decided to go through with the surgery having to face that along with my Grandmothers death will be hard on me. Please contiune to remember our family through this tough time and We love you all! I will update you tomorrow and let you know the decision about Ethan.

Saturday, November 15, 2003 3:27 PM CST

Hello Everyone!

Thank you God answered prayers! The lung is moving air through it again and looks alot better. We were able to look at the new xray today. It looks like a different babies lung. The others have been totally white on the left side but todays looked black which is the air moving through. The $6000.00 machine is helping but I know alot of it is praying people like you out there lifting Ethan up daily and God answering our prayers. I gave him a bath today. It is funny the little things we do everyday as a parent mean so much more if they are in the hosptial. The nurses usually give them to him while in the unit. I beat them to it today. He has so many lines all over him that it makes it hard for us to do it. I really enjoyed it. He just looked up and smiled at me the whole time I was bathing him. I listen to him today with the stethoscope and he sounded alot better. I could hear the air moving again. It hasn't be having any sound for over a week. Andrew is doing alot better too! Thanks for all you that called to check on him. He is so excited tomorrow. He will get to go up on the helopad with the life line team to look around and get in the helicoptor. He thinks that is so cool. It is raining here today and very cold. We asked the resident today what she thought about them still wanting to do the trach and she wasn't sure. She said our pulm team would have to decided that. So I will keep you updated on that over the next couple of days. Just please be praying for him and put him on your church prayer list Sunday. I truly believe pray is what has gotten us this far. We can never begin to thank all of you for the love shown to us over the last 7 months. You will never know what it means to us to have you call, come or read the wonderful emails. I encourage all of you to just sign your name if nothing else to let us know you have looked at the site. It would alot to know who signs on during the day. Well I have to close for now the RT wants me to try to you the inexhaulter on Ethan. Take care and We love you all!

Friday, November 14, 2003 2:31 PM CST

Hello Guys!

Just wanted to update you guys and let you know this are pretty much the same. Yesterday they thought they heard a heart murmur so they did a echo. The echo look to have a mass around the heart so they did a color contrast ct this am. It was fine. The mass turned out to be where the lung is collapsed so it is putting a shadow on the heart. The ENT doctor came in today to talk to us about the trach. The surgery is scheduled for Tuesday. The doctor we wanted to do the trach will be able to do the surgery so that makes it alittle easier. I have tried so hard through all of this to stay up beat but as the days come closer to the surgery I'm starting to feel hopeless. It is so hard to look at him knowing he may not make it through the surgery. I just hope and pray God will contiune to give us the peace and strength he has this far. On a up beat side. The doctors came in this morning and said Ethan had been chosen to be put in the UNC calender. They go around and vote for children to be on the calender each year. So little Eman will be in it. It was so funny because as a mom I think he is so beautiful but everyone that meets him there talks about how beautiful he is. So he had his picture made today. I can't wait to see them. My Grandmother is still holding on. I don't think it can be much longer because she isn't eating, drinking, or having any output. It has been 5 days since any of that. I will update you guys tomorrow. Take care and We love you!

PS. I know you have all probably heard on the news about the upcoming fundraiser at UNC. It is for the UNC Children's Department. It is a live telethone on NOVEMBER 20 for 20 hours they want people to contribute 20 dollars to help research, families and for the children. I really encourage each of you to donate 20 dollars. That is only .66 cent per day and we all spend that probably daily on a drink. So please give. I will tell UNC I did a free ad for them on Ethan's webpage. HAHA. Talk to you soon!!!!

Wednesday, November 12, 2003 9:44 PM CST

Hello Guys!

Just wanted to give you alittle update on Ethan. Not alot is new today except they took him off the CPAP machine this morning. I think he is really glad. He looks better even if the lung doesn't. I was able to give him a bath this morning and put his own clothes on him. That makes him look like he feels better just by having real clothes on. I don't like it when he can't wear any. They decided today that the xray still look the same so they would contiune to use the inexhaulter machine until Monday unless something were to happen (emergency) then our head attending will be back to UNC. She has been in Europe teaching the bronchoscope to their doctors. A doctor here at UNC came up with the surgery and they go everywhere a teach other doctors how to do the procedure. She will be in service next week so we will be glad. That means she will be the one on the floor making rounds and deciding what goes on. All the doctors are wonderful but we just rely on her alot. She is truly a wonderful lady. Her husband is Ethan's heart doctor. I told her a few weeks back I thought we were giving her house alittle to much money. She thought that was funny. I think she will be ready to do the trach surgery next week if she doesn't see any improvement in the lung. I got Ethan proofs back tonight. They are so cute. Thanks for all of you calling me to check on my Grandmother. I was able to go see her tonight. She is still hanging on. It was so sad to see her lying there not knowing she is even in the world. I never thought I would get to this point in my whole life to say I am truly ready to let her go. She has lived a wonderful 95 years and been the most GODLY LADY I have ever met. I just hope I can become the woman she has always been. She truly is my HERO!
Well I have to close and get Andrew in bed for school tomorrow. I will update you later! We love you all!

Tuesday, November 11, 2003 5:04 PM CST

Hello Everyone!

Just wanted to update you guys and let you know we have been alittle in the flesh today. The inexhaulter finally got here. They delievered it and just left it in his room and didn't show anyone how to use it. The hosptial hasn't every used it on anyone other than adults so they needed someone to show them and us how to use it. It has taken all day to get them to agree to come back to teach us about it. They should be here by 7:00pm. Just pray that they are able to now how much pressure to use because they could damage the good lung. It is alittle scaring because know one really is comfortable with the machine besides one RT guy who only has worked with it on an adult in Canada. They did a chest xray again today and there is still no movement in the lung. The resident and nurse thought they heard something moving in the lung but it didn't show up to be better on the xray. The little baby John got to go home today so pray for his mom and dad as they adjust to the whole new beginning at home with know nurses or doctors around. I know how scaring that is to know your little baby is depending on you . It makes life very stressful as a parent . Please contiune to pray for Ethan and our family . Also, pray for Andrew he is getting sick and my Grandmother is dying. The doctors told my mom today that it is only a matter of time. It is hard for me because I want to be there and my heart wants to be here with Ethan. I know my Grandmother has lived a wonderful life and is ready to go home and she will be in a better place. Thanks for all the prayers and We love you!

Monday, November 10, 2003 9:28 PM CST

Hello Everyone!

Well it is another day in PICU and the lung still is down. The new chest xray showed the left lung is totally closed. The doctors were hopeful that it would improved some by today with the medicine but it hasn't. There is no air flowing through the lung at all. The inexhaulter didn't come in today. It should be in tomorrow at Cary and they will bring it to the hospital after lunch. We will try it for 2 to 3 days to see if there is any change. If not then we have truly tried all the ways the doctors know without putting in the trach. I think if it doesn't work they will schedule the trach surgery for the first of next week. I think I told you guys about the little baby I met with a trach. His mom is wonderful. He has let me go in to watch he work with him. He is such a sweet and handsome little boy. He just sits around a smiles all the time. It is so funny how these little babies go through so much and still are happy. His mom told me one of the hardest thing about it is you can't hear them cry or make sounds anymore. They will work with him as he grows to teach him how to use sign language until he is able to learn to talk. A nurse here is also a big help. She is the trach nurse that teaches parents and also has a little cousin with one. She has talk to us about it alot. Ronnie and I have come to agree if this is what Ethan has to have then we will do it. We really wanted to get through Christmas without it but I don't think it will happen. It will be so wonderful if he has it and seems to get better. Hopefully it will help prevent him from getting pneum so much. I just pray if he goes through it that it will truly help him. Please contiune to pray for Ethan and that Gods will be done. Take care and We love you!

Sunday, November 9, 2003 4:39 PM CST

HELLO EVERYONE!

Sorry it has been a couple of days since I gave you an update. I have been out of town with our ladies from church on a ladies retreat. I truly needed a break and time to have fun and laugh. We had a wonderful time but I was ready to come home and see my boys. I haven't shown Ronnie how to log in to the parents site where you update his page yet so he couldn't keep you informed. Alot has gone on with Ethan since thursday. He is in the PICU again. The left lung is totally down again and the pneum is back. They decided friday afternoon to move him to the unit to try the CPAP machine. It isn't working. He has started having bradycardia, I think thats how you spell it. Anyhow, it is where the hearts rate drops. Normal for him is 125 to 180. It is dropping below 95. When this happens we have to move him to get it back up. He hasn't had this problem since we had the nissen and gtube put in July. The doctors said this morning it maybe the machine. They are going to try the machine until tomorrow morning then repeat the chest xray. Hopefully tomorrow the inexhaulter machine will be in. That is the 6000.00 machine they order for him to try. The crazy part is the hospital don't have one and its something they don't use anymore so we have to buy it. If after a few days trying it and the lung doesn't seem to be coming up we will have to do the trach. I'm so scared about the whole thing. The not knowing is the hardest part for me. Will he have to be on a vent forever? Will he even make it through the surgery? There are so many more and the doctors can't answer them for us because they don't know anymore about NM than we do. I was hoping that we could get through the holidays and not have it but, it doesn't look like that will happen. I know God will give us the grace, faith, patients and most of all the strength to get through it because he has so far. Thanks for all the prayers and we love you all!

Thursday, November 6, 2003 1:57 PM CST

Hello Guys!

Just wanted to update you guys and let you know things are doing pretty good today. Ethan had really good night to have gone through both of the surgeries. Ronnie and I slept fairly well. I wished you all could have seen us. The rooms all have a pull out couch. All but two or three rooms have what I call 1/2 of a twin bed and the others 1/2 of a double. We got the 1/2 of a twin. You can only imagine what that looked like with both Ronnie and I sleeping on it. It wasn't a really cute picture. We tried to sleep side by side but around 4am I moved to the foot of the couch. I told my doctor this morning had I known we would be here awhile I would have told them we have be exposed to chicken pox. The isolations room have double beds. She just started laughing. Back to my little man. We are still waiting on the cultures to see if they grow anything but it will be at least tomorrow before we know if we have a bacteria infection or not. The only thing so far it has shown is there are white bloods cells growing. I told you yesterday about the two options the doctors wanted to try. The first is a machine I finally know the name it is called an inexhalater Its a machine that will force a column of air in and out the entire lung area. The only thing about this is it cost $6000.00 and we don't know if BCBS will cover it or not. The other machine is the cpap. We will have to go to the picu dept. to have it put on. I truly don't feel Ethan will do well with it because the prongs fit in the nostrils and he will not like it at all. We probably will spend alot of time trying to keep his hands from pulling it out. If these two things don't work then they will have to go back to the drawing board. Our doctor is out of the country in Europe teaching the bronchoscopy. She doesn't return til the 17th. I feel like we want make any major decision until see gets back about the trach unless we have an emergency and it depends of his life. We met a mom and little baby yesterday with a trach. He was so beautiful. He was born cleft palate. He case isn't anything like Ethan's but aleast I finally saw a baby with one. Usally I see kids 2 and older. The baby we met hopefully will be reversed after all his surgery. His mom is really sweet. She came down and talk to us and said we were welcome to come watch her when she had to change or take care of it. It means alot to have someone to talk to that truly walks in your shoes. The doctors can only tell you clinically but a parent can tell you real life what it is really like. I know God has given us Ethan for a purpose and right know it is hard to see what that is but one thing I know is Ethan has touch more lives in 7 months that most people will in a life time. Thanks so much for all the wonderful emails and for the encouraging words you guys send us. You will never know what it means to us to know we have people lifting him up everyday. I told someone the other day God was thinking how many people know this little man. Thanks again for being wonderful prayer warriors and keeping up with us. Thanks Joey and Nicole for taking care of Andrew. I will send your child support check later this week.HAHA. Take care and we love you.

Wednesday, November 5, 2003 3:49 PM CST

Hello Everyone!

Just wanted to update you guys on how today went. We are back in the hospital for any of you who didn't see yesterdays update. They did the bronchoscope at lunch and things went fairly well. Ethan is very fussy and running a fever. His heart rate is up so we told the doctor that had to be a sign he is in pain. They were able to go ahead with the central line. Hopefully it will last 6 to 8 weeks. Now thank goodness he doesn't have to get stuck for awhile. That will seem good not to see IV's in his little head. They also will be able to get labs from it too. I know Ethan will be glad about it. The lung is still collapsed so they have to more steps they will try before we have the trach. It is a mask they place over the nose and mouth to push air in and cause positive pressure to the lung to inflate it. The other is put him on a CPAP machine for several days to see if that will make a difference. He will be in longer than we had hoped. They are going to start him on a new antibotic today so I feel we will be here aleast 7 to 10 days. Well I have to close now the doctors are coming in. Take care and we love you! Andrew I love you and will see you tomorrow night! Be a good boy for me! Study your spelling words tonight.

Tuesday, November 4, 2003 8:45 PM CST

Hey Guys!

First of all sorry I have just left you all hanging. We have been so busy the last couple of days trying to get lots of things done before our doctors appt today.

We have Ethan's dedication on Sunday night at our church. It was beautiful. First of all Pastor Tom thanks for being the Godly Man that you are and for being a part our Ethans special day. Thanks Brother Joel for changing the words around and playing it for us. You are truly the best choir director and panioist in the world. Brother Wayne thanks for singing. You did a wonderful job even though I know it was hard to keep youself together. To all my family and friends thanks for coming out and supporting us. I can't begin to say thanks enough for all the prays that went up that night for him.

On Monday we went to have our family pictures made. That was days job by itself. I ironed clothes for all of us. On the way there Ronnie said watch us get there and one of us has left something. I knew that was the case because I packed it all belts, shoes, shirts, pants, and etc. So I knew everything was right. We got there and change into our clothes and I had ironed Ronnie a pair of Grants pants. The photography had to give him a pair of his. So everything worked out alright. Ethan did pretty good but tired out quickly. I wanted to have a family picture before he went back in the hospital.

Today we went to UNC to see the lung doctor. She was very pleased at how well Ethan has been doing since we came home. She could hear air moving through the lung but still wanted the xray. Once she got the results back she felt the lung was down and they needed to do the brocho scope tomorrow. We have to be there at 9:15 am in the morning.
They will do the surgury and hopefully we will go a regular room. We have to stay tomorrow night and depending on how well he is doing we may come home on thursday. They will try to grow cultures and once they come back we may how to go back in for antibotics. The cultures grow for up to 72 hours before they make their finally decisions on what to do. She is still trying do anything she can to help him before we have to put the trach in. That is her last result to but she said we have to be prepared that it probably will come to that. Ethan will tell us when. She said he will get tired and really not care to fight anymore. If this happens then we will have to do it then. Just please contiune to pray God's will be done.

It is still so hard for us to know what to do. They don't know if he is truly strong enough to handle the surgury. If we do it and he isn't we have mixed the time with him we could have had. If we do the trach he may have to be on life support all the time. I feel like our backs are against the wall. I know the God we serve is an ON TIME GOD and he will BE ONE TIME when decision time comes. He has everytime so far. Please pray for us tomorrow that the doctors get the answers they need and that Ethan will go through this and stay strong. We love you all!

P.S.

Wendy and Chris,

Thanks for bringing Blaine Sunday night. It was great seeing you guys. Blaine has really grown since our DUKE trip. I pray God will contiune to strengthen him everyday so we can take him back to PICU and say look what GOD can do if you only trust and believe. I also we pray for God to contiune to give you both the strength and peace you need during all of this. God sent us to DUKE so we could me great christian friends like you. WE LOVE YOU GUYS!
KISS BRETT, BLAKE AND BLAINE for us. Thanks Heather for coming to. Hope Dustin did good at his golf tourament.

Saturday, November 1, 2003 10:45 PM CST

Hey Guys!

Just wanted to let you guys know Ethan is doing very well. We have really had a good day. The air is still moving through the lung or aleast I think thats what I hear. It is so funny the nurses and doctors go to school for a long time to learn all they want us to know in a few weeks. We are having to to breathing treatments, chest pt, and bagging every 4 hours. It isn't that hard but it is so funny because they gave me the stethoscope and told me to listen. That sound was air moving through the lung. It sounded like the heart beat to me. This morning we decided to to go to the Cotton Festival. Our church choir was singing and it was a way for us to get out of the house. The weather was beautiful so Ethan could go out. We are able to go out some but we have to be very careful who he is around. As winter comes we will have to stay in alot because there will be so much colds and flus out for him to be exposed to. It is so hard because we want everyone to hold and touch him but we have to limit it because of the fear he may catch something. I think Ethan is trying to cut teeth. He keeps his little hands in his mouth all the time. He also loves to suck his thumb. It is so cute. The doctors say that is a really good thing because it keeps his sense to suck up. He looked so cute last night. We dressed him up long enough to take pictures of Andrew and him. He was the Little Pumpkin like the pictures on the web and Andrew was an army man. Well I am going to close I will update you tomorrow. Love ya

Friday, October 31, 2003 1:14 PM CST

Hey Guys!

Sorry I didn't get the email to work yesterday. I sent it but somehow it didn't show on Ethan's site. We are HOME.
Thank God!!! We had a really good day yesterday besides he had shots before we left and is alittle fussy. He has ran a low grade fever with it too. We took him to ABC peds yesterday to get his synagis shot. On tuesday we go back for a follow up and repeat the chest xray. If it show looks like the lung isn't working right or cloudy we will have to stay. On wednesday they will repeat the broncho scope and then we have to decided whether we are going to do the the trach or not. If so I think all that will have to take place next week. I will keep you updated on that. Sunday at our church we are going to have him dedicated. It will be during our night service. It starts at 5:55 pm if any of you would like to come. We would love to have you there. Thanks for all the prayers, phone calls, visits, and all the wonderful emails. This has truly been a wonderful thing for us to do. It helps us be able to let our feelings out and let you guys know how to pray for Ethan and us. You guys will never know what it means to us to log and see that you have been checking the site to see how his day has been. I would love for everyone to feel they can email us back. Well I need to go and I will update you later. We love you all!

Wednesday, October 29, 2003 5:08 PM CST

Hey Guys!

Just wanted to let you know we are having a really good day. Hopeful tomorrow we are going HOME! We are waiting on getting his shots here so we don't have to take him to ABC PEDS when we get home to expose him to all the flus and colds out there. We also have to get his synagis shot before we leave. It is a shot he gets once a month to hopefully prevent him from getting RSV again. He still could get it but it should be a mild case. We will go home and have to come back on Tuesday to see the Lung Dr. She will repeat the chest xray and at that time if the lung doesn't look clear we will be admitted again. On Wednesday they will repeat the broncho scope at that time if they feel the lung is starting to collapse or the air isn't flowing through the lung then we will have to decided on the trach. I just hope and pray the lung will contiune to improve over the next few days and he not have to go through it. The doctors are alittle worried about if he is truly strong enough to undergo the surgery or not. The actual surgery is about 2&1/2 to 3 hours but the recovery is the hard part. They have to keep all patients in a coma like state for 3 to 7 days for the site to heal so they don't pull the trach out. The medicine to put people under isn't good on a patient with muscle problems. So either way it is a very high risk surgery for Ethan. Just please contiune to pray for him, us and the doctors that we all make the right decision for Ethan. I have to close and head home to see Andrew and get Ethan machines ready to bring tomorrow. I will update you then to let you know if we come home or not. Take care and We love you!

Tuesday, October 28, 2003 11:28 PM CST

Hey Guys!

Sorry I didn't update you before now, but there isn't really alot new to tell. He had a really good day today. Thanks Nicole and Crystal for staying with him. Ronnie and I were able to be at home today to get somethings ready for Ethan when he comes home. He has so much home health equipment. I had to get it cleaned and charging again. We have been having major water heater problems for the last 3 weeks at home. Ronnie worked on that today. Thanks Jeremy and Jason for helping Ronnie out. I know our kids will be glad not to take cold showers. Back to Eman maybe by friday he will be home. Tomorrow morning Ronnie and I will have to be trained on bagging him and be able to feel comfortable with it. I don't think I will every be comfortable but I will do it if thats what it takes to get him home. They won't put in the portacath til our next admisson. He was so funny when we got here tonight. He was asleep and he heard me talking and those little blues popped wide open. He stayed awake for about an hour looking around and smiling. He was so cute I was holding and talking to him while Ronnie was checking his website. I said to Eman, I cant believe you are only 7 months old and have a website. He just smile like he really knew what I was saying. I told him all you guys log on everyday and see how he is and write back. I started reading him what was on there and he acted like he knew exactly what I was talking about. Well I'm going to close. I will update you tomorrow. Oh Yeah if you didn't notice the poem on the top of his web page go back and read it. It is so beautiful and true. A nurse he gave it to me. Her little boy has CF. She is so wonderful. I have been able to open up to her because she knows what we are going through with a sick child. Take care and thanks for caring. We love you all!

Tuesday, October 28, 2003 11:28 PM CST

Monday, October 27, 2003 4:55 PM CST

Hello Guys!

Just wanted to update you guys and let you know we are having a really good day. The doctor said the xray looks alot better. The air is still moving through the lung. The only real concern right now is he isn't having very much out put. They are monitoring it right now but I feel everything will be okay about that. If he contiunes to do well today and tomorrow maybe by the end of the week we can go home. If he doesn't then we will have to have another brocho scope and at that time they will put in the portacath. If we go home without it this time they will just do it on the next admisson. Ronnie and I are going home later on. Nicole came back to stay with Ethan. It means so much to be able to leave and know someone is with him. The nurses are wonderful but they aren't able to come in a sit down to hold or rock him. That is one reason we don't leave him because they just don't have the time to come in and spend with him. My heart aches as I walk down the hall and there are just room after room of babies with nobody in there to hold them. I thank GOD everyday for Ronnie and I being able to be with Ethan. I don't believe I could get through this if I knew I couldn't be with him or someone that loves him be here. Well I will update you guys later. Take care and We love you!

Sunday, October 26, 2003 10:37 PM CST

Hey Guys!

Just wanted to give you the lastest on our little man. Well today is the first time Ethan has truly showed us his little temper. He decided about 3 o'clock today he was tired of having the IV in his little head so he pulled it out. NOT A REAL GOOOD IDEA! Ethan didn't realize we only had to try to put one back in again. For any of you who have ever had a baby sick and need IVs you know what I'm talking about. He doesn't have any veins to hold the IV in. By the time they get it in it blows or just doesn't work. Ronnie and I hadn't gotten back to the hospital yet. I told you Crystal went to stay with him so we could go to church together. Which we truly enjoyed. The nurses can't get the IVs in the veins so they have to call the Lifeline team in. They stuck 10 times and still no Iv. We were on our way back up so I told the nurse it was time to stop. Not to touch him until we got here. Crystal and Nanny told the nurses that if his parents were here they wouldn't let them contiune to stick him. We were both so upset they had put him through all that but only we can refuse treatment. The resident came in the to talk to us once we got here. Now they know whether we are here or someone is sitting with Ethan he is never to be stuck over 3 times. Anyhow, they still don't have the IV in but they feel he has been on the Iv antibotic long enough to treat the infection so he doesn't have it now. They did a chest xray about 11pm but it will be tomorrow before we know anything. The nurse and the doctor said the lung has more air moving through it which is wonderful news. Hopefully we will be home soon. They really aren't doing anything we can't do at home now. I have to have the RT lady teach me about bagging him with the face mask so I truly feel comfortable with it. We have ask about putting in a central line or a porta line (it is a line under the skin so he doesn't have to be stuck anymore). Maybe we will know more tomorrow. It isn't something I truly want but it will be easier on him in the long run. Well I need to close and get Andrew to bed. I will update you guys tomorrow. Thanks for all the prays!
WE LOVE YOU GUYS! Good Night Ronnie I LOVE YOU SO MUCH, I know you will read this before you go to bed. Andrew said good night diddy and give Eman a big kiss for us. See you tomorrow. PS> Please go to 5th floor and see if Krista is working a get that poem she has for us. Tell all them I said HEY

Saturday, October 25, 2003 8:55 PM CDT

Hello Guys!

Hope this finds all you guys well. We had a really good day. The doctors told us this morning the lung has air moving through it now so that is a real good sign to us. Maybe that means he is turning around. We have been on this antibotic for 8 days today. They want aleast a 14 day course before we even get to think about us going home. I am so ready to go home because it feels like we have been here forever this trip. I don't know why because so far this may be the shortest trip we have had here.

We were able to go out today and spend time with Andrew and Ashelyn. We took them to eat and to the movie to see GOOD BOY. It was a really cute movie if any of you would like to take you kids. They had a really good time. Both of them needed sometime with us. Lots of time I forget about how much they are going through. It is as hard on them as it has been on Ronnie and myself. Andrew is having a really hard time because he doesn't understand that Ethan can't help when he gets sick. He has started being very clingy since we have had to be away so much. We have tried hard to keep him with us as much as possible. Most of the whole 7 months he has been with us besides a few times when we didn't have a choice. Crystal is staying with Ethan tonight so Ronnie and I both can go to church tomorrow. That will seem good. It makes for really long week when your not able to go to church. Well I am going to close so we can head to Dunn. Take care and we love you guys!

Friday, October 24, 2003 11:27 PM CDT

Hello Guys!

HAPPY BIRTHDAY ETHAN 7 MONTHS TODAY

First of all Thank You so much Ms. Micole (Nicole), thats what Andrew calls her for giving us a break last night and today. Ronnie and I truly enjoyed our time together. We really missed Ethan, but we needed time alone. Crystal thanks also for staying, but you didn't have a choice.HAHA. No really thanks. I know it is friday night and you rather be hanging out with you friends.

Ethan had a really good night and day. The doctor couldn't tell Nicole very much other than he sounded better. We were able to read the Drs. notes when we got here and it sounds like he had a really good day. The lung did have air movement today which it hasn't been since we were admitted 16 days ago. That makes me feel alittle better. Maybe the medcine is starting to work. I will be able to know more tomorrow when I'm able to talk to the Dr. in the morning.

He was so cute. When we got here tonight he was sound asleep and I told Ashelyn and Andrew to shhh and those LITTLE BLUE ANGEL EYES popped wide open. My computer time is off it is 12:41 and his little eyes haven't closed yet. He has looked around and smiled alot tonight. This boy loves to watch tv. I get so tickled at him. The doctors will try to talk to him and he will be trying to look around them to see the screen.

I think I told you guys about them starting him on a new medicine called Carnitor. I think I can't remember. It is used sometimes in people with musclar problems. Ronnie and I read about it on the internet. We read about a 4 month old baby that started getting it and she begin to improve with her muscle strength. She was able to learn to sit up and finally learn to walk. I don't know how much it will help but he does seem to be moving more. It could be he is just getting able to or maybe it is the medicine. It really doesn't matter as long as he is. He weighs 12lbs & 3oz on wednesday. His little faces is starting to look alittle chubby.

Well I will close for now and update you guys tomorrow. Thanks Johanna for putting his pictures on for me. Check them out under photos for all you who haven't seen him. He is truly a precious and beautiful baby. Before Crystal left tonight the nurses where fussing over who was going to take care of him tonight. She was so funny telling us about it. She said I thought they were going to fight. Several of the nurses who haven't had him came in and said we want to see the baby everyone wants to take care of. Thank you all for taking the time to check in on us and for the notes, you will never know what they mean to us. We look forward to logging on and reading them everyday. Michelle we finally got you email on Ethans page. When you finish typing you have to preview, then press add to guestbook maybe that is what happened. Now I'm gone so I can rock my little man to sleep. We love you guys.

Thursday, October 23, 2003 6:17 PM CDT

Hello Everyone,

Just wanted to update you guys on Ethan. The Dr. came in and talked about the cultures than have gone 10,000 colonies of pseudomonius and 300,000 cultures of oral organisms. So now you asking what does all this mean. I don't know.HAHA. No really I don't understand all the med libo and terms they use, however I'm learning alot more than I want to. They are going to contiune to treat him with the the two antibotics they have on board for probably 7 to 10 more days. At that time if things aren't improving then we will have to make a decision on what to do next. They had said early in the week they didn't think Ethan would be able to have the trach because the lung has to be strong enough to stay inflated and his hasn't shown that. This is the 4 time the left lung has collapsed. Now they have come back and said they may be a option again. There may also be a chance to have a machine called an Iron Lung which from what I understand is a machine you put him so many times a day and it trys to inflate the lung. It is so hard because I feel like we are having to play God and I don't like that at all. UNC don't really use the Iron Lung anymore it is just something our support family told us about and they said that could be an option. It is so hard for me lately because I have always gone on what my heart told me to do with him and now I feel my heart doesn't work. I hope and pray when the time comes to make the decision on what to do I have some peace about it. Right now I don't have any. I feel we are having to make the decision whether Ethan lives or dies and I can't handle that. I told the Dr. today I know there is only so much they can tell us because only God knows what Ethan's future holds. The whole team of lung dr are wonderful. They truly care for their patients and families. I got upset talking with him today about I didn't want to make the wrong decision about what to do and his eyes started to water up. He told me his heart went out to us because he knows it is one of the hardest things we will ever do. Just please contiune to pray God will give us grace and faith to get through this as he has thus far. I don't know how we would have gotten this far without our church family and friends. You have all been wonderful. Thanks Mr. James and Mrs. Becky for coming to see us today it felt good having company. Mary, Thanks so much for coming to see us yesterday and today. It truly meant alot. Mary is a mom we met at Duke when Ethan was there. Her little boy Bo was in the PICU with Ethan. Please add him to your pray list as he contiunes to recovery at home and also some other friends from Duke that we keep in touch with kids their names are Blaine and Lexie. They are all special families and I know God put us all together for a reason. I know our church family will be praying for Madison, Allison, and Collin but for everyone else add them to you list also. I will go because I know you probably tired of reading by now. I will update you tomorrow. Take care and WE LOVE YOU!

Thursday, October 23, 2003 11:53 AM CDT

Hello Everyone!

There isn't anything new to tell you guys. The lung still is collapsed and the air isn't moving through it. We are having to use a bag (like if he had stopped breathing to pump air into the lung to try to inflate it). He doesn't like it at all. Ronnie and I haven't really been able to handle doing it to him. Usally we have the RT do it. I hate to do things to him that I know he hates because I want him to feel Ronnie and I are someone to protect and love him. I know if it is something that has to be long term I will do it but right now I will have them to. We are both going to get a break and come home tonight. This will be the I think the second time we both have left him for a night. Stephanie our Pastor and wife daughter (his other mommy)and my Mom have spent the night with him for us to go off together and get a break. Thanks Stacie and Derek for staying with him saturday night. Both of us were able to go to Crystal's paganet. It meant alot to her for both of us to be ablet to be there. Nicole our neighbor is coming to stay tonight. I always refer to her as the youth ministers wife so today she is my neighbor. I have to close I will update you later if the doctors come in with any new info. I don't think I have put his room number in our journal but you are welcomed to call 919-966-0080.

Wednesday, October 22, 2003 9:42 AM CDT

Hello everyone,

Sorry I didn't update you guys yesterday, but it was a very long day and I didn't have a chance to go to the computer lab. Ethan had the broncho scope and it seemed to be helpful. They were able to see the vocal cords work this time which was wonderful news for us. They haven't every work to protect his airway. We have been able to hear him cry, which he doesn't do alot. Really the only time he does is he has a dirty diaper or if they are doing something to hurt him. The left lung is was inflate and working when they left the OR, but by the time he got to the recovery room it had deflated again. The Dr. told us the lung didn't have alot of pnem in it like they thought. They did a washout and sent it to the lab. It will be aleast 72 hours for the final reports to come back. We will know today if it has gone anything yet. It will be able to tell them if they are treating him with the right antibotics. The lung doctor said yesterday that the left lungs opening was very narrow which was causing the problem. The hole is closing up and not letting the air pass through. So with all that said she told us the lung isn't working correct. They will sit down today as a team and discuss what to do next. It has been so hard this time because they really don't know what to except with Ethan because this is the first case and they don't know the short and long term problems only what information Ronnie and I can give them from our support groups. We have told our Dr. if this is a sign that this is the end then we want to take him home. They have promised us they will let us know so that we can come home to spend it with him as a family. I have to close now. I will update this afternoon when I know more. Thanks for all you logging on and emailing us back. You will never know what that means to us.

Monday, October 20, 2003 7:49 AM CDT

Hello Everyone,

Sorry I didn't update you guys yesterday. There really isn't much new to tell yet until this afternoon. I think I told you all on Saturday that they had to change the medicine again because nothing seems to be clearing up the pnuem. This morning they are going to repeat the chest xray in and if doesn't look better tomorrow they will have to do the broncho scope. The doctor also said yesterday that both lungs had some new word I can't remember but it is where the air isn't flowing through both lungs. I just hope and pray this new medicine will work because ever time they come in we are scared they are going to ask us about the trach surgury. We are having a really hard time with this because if it would help him I would have it done today but there a no with it. There are lots of pros and cons just like with anything else. UNC hasn't had a case of Nemaline Myopathy with a baby. They have treated an adult with NM.
Adulthood onset isn't bad. They sometimes have to use a wheelchair but a able to still have fairly good life. The infant form is the most severe because it affected the resp. and lungs. Most babies have not lived past 12 months because they go in severe resp ditress. Almost all the parents I have talk to in the family support group children have a gtube (feeding tube). Lots have a trach. I have asked them to help me with what to do because truly they know what Ronnie and I are going through because they walk in our shoes everyday. I want to thank all of you for your prayers and words of encouragement. It is so wonderful to go to update the journal and see someone has emailed us. It is a wonderful way to keep in touch with our family and friends. We don't get much company because we are so far away so it makes for lots of long days. Just please continue to pray for us and that God's will be done. I have been having a really hard time with this because I know when I pray I should pray for the Lords will to be done but my human heart wants to say GOD this is my child and please heal him. If you have never been faced with this as a parent count yourself truly blessed. This is the hardest thing I have every had to do. I know if you pray God hears all you prayers but what we pray mayn't be what he wants. I know miracles truly do happen. Andrew is truly Gods little miracle. I had to delivery him at 24 WEEKS old. They had to take him by csection because my blood pressure was up so high and making my kidneys shut down. He was in Cape Fear for 89 days. He truly is a miracle most babies didn't survive before 28 weeks 7 years ago much less not have any problmes. Most babies born early have CP, blind, deaf or just not able to survive. Andrew doesn't have one thing wrong with him. So we truly know God does work miracles. I have to close so I can head by to UNC. Take care I will update you all later today. We Love You!

Saturday, October 18, 2003 10:20 PM CDT

Hello Everyone!

Just wanted to update everyone on Ethan and let you know we are still at the hosptial. They had to change the medicine today because the other didn't seem to be getting him better. The lung hasn't really started to clear up and we have been in for 8 days now. I'm starting to get alittle scared because usually he has come around by now. The doctor said today if it hasn't cleared up better by Monday she would have to do a broncho scope on Tuesday. I hate to put him through that. He has to be put to sleep and like with everyone there are risk with being put under. They have a harder time with Ethan because of his sickness it makes them have to be real careful what they use. I just pray the new medicine will show alot of improvement by tomorrow. Ronnie is with him right now. I had to come home to help Crystal get ready to give her crown up. Ronnie was able to come home but has left to go back. Stacie one of our employees and her husband went to stay with Ethan. They don't know how much that meant to us. We don't ever leave him for more than to run pick something up to eat and come right back. I will go back tomorrow after church to stay this week. Please continue to pray for our family and that God will contiune to give us grace and peace while we go through this trial. I will update you all soon.

Thursday, October 16, 2003 4:16 PM CDT

Hello!

Just wanted to update you guys. Ethan seems to be doing pretty well today. We had to repeat the chest xray and I haven't heard back from that yet. I hope the new medicine they put him on yesterday is starting to work. The type of pnuem he has isn't covered by the shot we got. They also did a EKG today I really don't know why. The heart doctor didn't come today but a lady came in and did the test. Ronnie was able to go to work today so Ethan and I have laid around waiting TV which he loves to do. He loves Charolette Web. I believe I have watch that movie aleast 50 times in the last few weeks. I have to go check to see if the doctors are up making rounds yet or not. I will let you know something as soon as we found out. Take care.

Wednesday, October 15, 2003 9:47 AM CDT

Hello everyone!

Sorry I didn't update you guys yesterday, but I was having a really hard day. It is so hard on me. I try to be so strong about everything and have a good outlook on it all but somedays I just can't fight back the tears. We had alot of doctors come in yesterday to see Ethan. He seems to be doing pretty well. His bottom left lung has colapsed and he has pneum in the upper part of the lung so it makes it hard for him to breath. He is having to use O2 all the time right now but hopefully they will be able to wing him off more today. He only requires O2 at home when he is asleep so hopefully they will be able to get him back to that because the longer he is on O2 the harder it is for him to do without it. On the chest xray on Sunday the heart looked to be inlarged so they called in the cardiologist to see Ethan yesterday. He told us right now he wasn't worried about anything with the heart but he would have to follow him because with the type of diease he has lots of time it starts to affect the heart. We had to be moved to a isolation room late yesterday afternoon because when we were in clinic on Tuesday a week ago he came in contact with a child who has chicken pox so they have to isolate Ethan until they know he doesn't have them. They don't want it to go airborne because of all the cancer patients here. It would be hard for them to fight off the chicken pox. I was so upset because I felt we try to do all the right things with him, take him to doctor, wash hands before we touch, stay out of his face, all the things to keep him well and he might caught something from the hospital. We are sure alot of people think we should keep him a glass bubble and not go or do anything with him but all the doctors on our team have told us to go, enjoy, and do all we want with him because he could caught something that Ronnie brings home from work or the kids bring home from school. Our ped dr is coming to do as many home visits as she can to keep him out of the doctors offfice for the risks of catching this going there. We have all had to have a flu and pneum vaccine to help protect Ethan from catching it anymore than he has to. The pulm dr told to us yesterday about thinking about a trach for Ethan. It isn't something he probably will get this trip but if he continues to be sick then they is something they would need to do. That is a very hard decision for us to have to make. There are lots of pros and cons in it. We have joined a family support group for nemaline myopathy patients and their familys which has been very helpful, because you have someone to email that has been or is going through what we are. They have told us not to give up. Most of all the kids parnets I have talk to gets already have a trach and gtube. Several of the kids had to be trached before they ever came home from the hosptial the first time so they gives us some hope they so far Ethan hasn't had to be put back on the vent. They gave us the list of doctors they go to so hopefully our doctors will contact them to see what kind of treatments to do for Ethan. He is growing slowly but we will get there. He weighs 11lbs and 8oz and was 26in. He is so cute. The doctors laugh at him because he loves to watch TV and they will try to talk to him and he moves his head to try to be able to see the tv around them. Well I have to close and get back to the room to check on him. He was asleep when I left holding on to his Tigger. Take care and I will update you all soon. LOVE YA.

Monday, October 13, 2003 5:38 PM CDT

Hello Everyone!

Just wanted to start out by saying thanks to all our you for all the pray and support you have given to our family over the last 6 months. You will never know what that means to us. We are now back in for our 9 trip to the hopital for resp. distress. They have finally given us Ethan diagnosis if you haven't heard. He has a very, very, very rare form of Musclar Dystrophy called NEMALINE MYOPATHY. The doctors haven't given us much hope. They told us 3 weeks ago about the name and told us to take him home, enjoy every minute as though is was his last and to do all we wanted because they didn't think he would survive past 12 months. I can't explain how that felt. We have known for 5 months something wasn't right but as a parnet you also hope and pray for the best. It has been a very hard thing to except but one take one day at the time and pray for GODS will to be done and if it is his will then a miracle takes place. The doctors don't really know anymore about this type of dystrophy than we do. Ronnie and I are on the internet all the time trying to find out all we can about this type of myopathy. We have asked them to call every hosptial in the USA to see if they are doing any type of treatment. They will take another DNA sample tomorrow to see if they can determine the type of mutation he has. If Ronnie or I are a carrier or if one of us actually have it and not had any problems yet. It comes on at different times infact, childhood, and adulthood. Infact is the most severe form because they can't fight of resp. distress like you and I could. Please contiune to remember our family because this is very hard on the kids as much as Ronnie and I. It is hard for Andrew to understand that Ethan doesn't plan to get sick. We have tried to keep him with us through all this as much as possible put with school started back it is very hard. I have to close for now. I will updated you all later. If any parnet of Nemaline Myopathy reads this site and you have any help please email me.

Monday, October 13, 2003 5:03 PM CDT

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