Happy Birthday

Yesterday we celebrated both Joey's birthday and his Grammy's, and boy what a day. So many family members in one place, just thanking God for our blessings. I miss my son in a way, and in a way I'm thankful for the way things played out. Joey was suffering in his last days with us, and no child should have to live the way he did. I still remember looking at him and seeing myself. His appearance was so similar, and the way he would curiously study everything he could see just seemed a lot like the way I am. So I suppose in a way I really miss what I hoped for my son. I looked forward to seeing him run around the church like the other kids. I looked forward to teaching him that a scraped knee is nothing to cry to mom about. I wanted to give him everything I had, but I couldn't. When Joey passed away, a little part of me went with him. I just hope God sees fit to give me another chance to be dad.

The past nine months have been different for me and Jessica, but I suppose it is just a new phase in our lives and our marriage. We both still have our good times and bad times, and I try to catch when those bad times come up so she doesn't have to deal with it alone. Overall, I'd say we've moved forward in our lives and we are both much better people now than we were before.

Thanks to everyone for the kind words, the frozen meals, the financial support, the cards that come when we least expect, the hugs for my wife, the time off work when we really needed it, and the compassion that came from all directions in amounts that were simply immeasurable. Thank you so much for everything.

Mike

Jer 29:11

Our Little Angel

Joey went home to God yesterday evening. Mike and I got to hold him until the end and we got to hug him and kiss him and cuddle with him and love him and we told him it was OK to go and that we would see him again in heaven. We know Joey is in a better place now and that he will be a happy healthy little boy in heaven where there is no more crying and no more pain. The Lord gave us Joey for a little while and we loved him as hard as we could while he was here and all of you helped us do that and we are grateful. Our hearts hurt right now, but we know God has a plan for us and that He is good and will take care of all of us through this difficult time. He led us to a wonderful hospital with caring people who cried with us last night. He led us to create this blog where all of you have laughed, smiled, cried, hoped, and prayed with us. He has brought Mike and I closer together through Joey's life and given us family and friends to help us through it all. We are so blessed by everything that Joey's life has given us, the joy and pain of parenthood, the support of wonderful family and friends, and the ability to trust God and lean on Him. We're still very sad, but we have no regrets. We did as much as we could for Joey and we loved him the best we knew how while he was here with us. If we all trust in God and believe that Jesus Christ His son died for us and ask Him into our hearts and to be Lord of our lives, we will all see Joey again when we get to heaven. That is our prayer, that Joey has made a difference in people's lives. We love you all and hope to see you this Saturday evening at 7:00pm for Joey's memorial service. It's at Elwood First United Methodist Church on SR 13 one block north of SR28. Thanks again for all the support and please keep praying for all of Joey's family and friends who will be missing him so much until we see him again with God.

Joseph Luke Tharp (10/28/06 - 1/10/07)

Baptism

Joey is getting baptized this afternoon. Hopefully he won't be too fussy about it. Joey had a pretty typical day for him yesterday. He likes his left side and fusses when he gets put on his right side, but he has to be turned or else he'll get skin breakdown (bed sores). Joey had a few of his aunts and uncles as well as some grandparents visit him yesterday without any episodes. He's just been looking/acting uncomfortable at times the last few weeks and it's breaking my heart that I can't do anything to make it better for him. Please keep praying for Joey's comfort as well as his family's. Thanks.

Family Care Conference

We had a family care conference (big meeting with all the doctors, some nurses, respiratory therapists, clergy, genetic counselors, and ethics committee members) yesterday. We all have a similar understanding now as far as Joey's prognosis and it's pretty grim. The doctors and neurologists feel that the chance of Joey improving any is next to nothing and that his life will be very short. The higher the spinal injury, the shorter the life span and Joey is showing signs of injury that is pretty high (C1 & C2) which is about as bad as it can be and not be dead. As it is, Joey will be on the ventilator the rest of his life. He will never be able to talk or use sign language and the possibility of his cognition being delayed is pretty high as well. Babies learn to communicate and they develop their neurologic pathways by experiencing their world (touching, asking questions, exploring) and Joey's interactions will be severely limited due to his injury so he may be developmentally delayed pretty badly. This is the big difference between Joey and other spinal cord injured patients. Usually, older patients already have neurologic development and some communication skills, where Joey does not. Teaching Joey to communicate using only eye movements will be next to impossible. He is at a huge risk for infection from the mechanical ventilation as well as from lack of movement. Joey can't cough up his secretions, so he could get infections pretty easily. Also, it seems like Joey has been getting more uncomfortable the last few weeks with the tube in his mouth and with not being able to move and look at his world the way he wants to. It's been breaking our hearts that we can't help him and we can't make him any more comfortable. The only thing we can do for him is love him while we have him because we know we're going to lose our son, it's just a matter of when. Sorry to be such a downer, but I felt that it was important for all of you to know where we are and how bad we still need prayer. Thanks so much.

Big Boy

Joey is now up to 12 pounds 2 ounces...wow. Joey had an OK day yesterday and an OK night. He was alternately happy and fussy. I actually had to rock him to sleep yesterday by moving his hips back and forth while he was on his side. It's just so good to see him happy and so frustrating to see him fussy and not be able to do anything about it. Still not much to report since not much has changed. Thanks again for all the prayers and love and support. Please keep praying.

What a Chunker

Joey's feedings have been increased to 35mL/hour. Yikes, he getting to be so big. Joey had a couple of visitors yesterday that hadn't seen him yet, so he was being cute and getting lots of cuteness compliments. The mobile is working much better since the battery change on Friday, so for the most part, he was a happy boy yesterday. He may be getting his days and nights mixed up because the night nurse said he was up partying the night before so he was sleeping most of yesterday morning. Then last night he was awake and asleep in intervals, so we'll see how awake he is this afternoon. Not much has changed, so not much to report. Thanks again for all the prayers and support. We could never get through this difficult time without all of you out there praying and loving us. Thanks again, and please keep it up.

Ten Weeks Old

Joey is 10 weeks old today (double digits...woo-hoo). Mike got to hold him yesterday for a little while with no major episodes. I changed the batteries in Joey's mobile, so his mobile buddies are floating around at a less sluggish pace. He was hot again last night, so the night nurse had to strip him down to his diaper and a t-shirt so he could cool down. That's pretty much it for now. Thanks again for all the prayers for Joey and for his family and please keep praying.