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.

Our Little Hottie

Joey had a good night last night after the night nurse changed him into a T-shirt. He was just getting too hot in his little outfit last night. She thinks that's why he was fussy yesterday evening (Joey prefers to be on the cool side like his daddy). His temperature was less than one degree too high, but it was enough to make him mad. The doctor has increased Joey's feedings to 33mL/hour. Nothing else new to report. Please keep praying for Joey and for his parents too. Thanks.

Heavy Boy

I got to hold Joey again yesterday for about an hour and a half. It's great when I get to hold him, but because of the vent tubing, I can't shift him around at all so he gets pretty heavy. Joey is up to 11 pounds 14 ounces now, so holding that amount of weight in one position gets kind of rough. He started out awake and looking around, but he ended up falling asleep on my lap...he went through the heavy eyelids and everything. Also, Joey loves his mobile so much that he's run the batteries down in a week and a half, so we'll have to get those replaced. The night nurse just told me that Joey slept soundly throughout the night, so I don't feel to bad sleeping through the night now. Not much else to report. Thanks for the prayers and please keep them coming.

Immunizations

Joey got his second round of immunizations yesterday and he got some more blood. The night nurse said that he had another quiet night which is good since immunizations could make him fussy. We'll see how he does today, the fussiness could still be coming. Mike and I got our blood drawn yesterday for the clotting test and Joey's got re-sent. Now we're waiting for those results and for the ear, nose, and throat doctor to look at Joey and see if he's a trach candidate. That's all the new news for now. Thanks for the prayers and please keep them coming.

Quiet Night

According to his night nurse, Joey had a quiet night. No episodes, no fussing (except briefly during a diaper change), and not much to report. Joey had a blood draw to re-send one of his clotting factor (not exactly, but too hard to explain and close enough) tests to see if his elevated levels are elevating more or getting back to normal or staying elevated. Mike and I are going to be checked as well to see if there is a hereditary link to this particular elevation. Not much else exciting except I'm going back to work tomorrow, so if there's no post tomorrow it's not that something is wrong, it's more likely that I ran out of time. Please keep praying for Joey and for us too. Thanks.

Happy New Year

Joey's first new year...happy 2007! Joey had a good last day of 2006. He slept through most of it. He did get to wear his first big boy outfit that is two pieces (footed pants and a snap front top with little front pockets...too cute). He's just too stinkin' adorable. All of Joey's lab tests have come back normal except one blood test that has to do with his blood clotting normally. He's going to be retested and Mike and I are going to be tested since it can have a genetic link. Other than that, no new news to report...we're just waiting on the retest and the ear, nose, and throat doctor to check on the possibility of Joey getting a trach. We're just hanging out soaking up our time with Joey. Please keep up the prayers because that's what's getting us through this new and unexpected realm of parenthood.