Sunday, May 31

Hello to all! Clay was active and had a lot of visitors today. He was showing us how he could run down the hall. His brothers, family and friends wanted to see him. Only two visitors are allowed in his room; so, we placed him in his wagon and took him down the hall to see his visitors. A nurse and therapist brought Clay a real fish this morning. It is in his room and he named the fish "Nemo". He carried his fishbowl in his wagon so that he could show his brothers his fish. He laughed a lot today, and Chance had Clay really stirred up because he was tickling him. We brought him a chicken fajita this afternoon and he said "Mmmm....this is delicious" after each bite. It is a new month tomorrow and so we will have a new burn team in the unit. The doctors are wanting to go ahead and send Clay home with his trach tube. We are not comfortable with this and will talk to the doctors tomorrow. The ENT doctors at Children's hospital said that Clay needs to be comfortable with a "cap" over his trach before it is removed. If Clay is discharged from the hospital this week, we will probably still be staying at the Ronald McDonald House. Clay will have to go to the hospital for (outpatient) therapy several hours each day. He has been fitted for pressure garments and still needs to be fitted for a face (pressure) mask. I'm not sure if they will make his mask this week, or if this will be something that will be made after he's discharged. He will have to wear his pressure garments and mask for at least the first year. He will also need to stay out of the sun for the first year. We'll just find a lot of shade so that we can spend time outdoors. This will be a busy week with a lot of new changes. Thanks so much and have a good night.

Saturday, May 30th

Good evening, we apologize for the skip. It was not intentional, just exhaustion. The Fite family had a big day on Clay's behalf. Adventure Boot Camp in Carrollton sponsored a 5K run to benefit Clay. A lady that is a friend of the family organized most of the event, (Thanks Callie). There were several sponsors and many participants that ran on Clay's behalf. We appreciate everyone who helped or ran. Carson and Cody were the starters for the race and they enjoyed the opportunity to help out. This is Dad and I spent last night and today with Clay. He had a fairly restful night and a busy day. He has started eating like a horse and tonight he told me, " This spaghetti is delicious." Big words from a boy who hasn't spoken in over 100 days. He walked quite a bit and spent some time in the hall visiting with several family members. I think he enjoyed being the center of attention. We are hoping he continues to progress at the pace he has set for himself. It amazes us that his strength is returning so rapidly. We know it is the thoughts, prayers, and love of all that are assisting him in his recovery. He will have several rehab sessions in his future, but we will help him work his way through them. We wish everyone a restful and blessed Sunday. Good Night.

Friday, May 29

We apologize for not posting on the blog last night. I stayed at the hospital with Chance and Clay and it was late when I arrived at the Ronald McDonald House. Clay had a really good day yesterday. He is eating and drinking much more. He is excited when his tray arrives to see what he wants to eat first. He is keeping all of his food down and is becoming more active each day. His trach tube will come out this next week if he passes the "cap" test. He has a special valve over his trach tube right now and is doing fine with it. He is talking constantly, which is good therapy for his mouth (and good therapy for us to hear his voice). We were told that he could possibly go home next week (if he doesn't have any breathing problems when the trach tube comes out). If Clay is discharged from the hospital next week, he will still go in everyday for outpatient therapy. The Care Coordinator will visit with me about all the specifics. We will post more later. Thanks to all!

Thursday, May 28

Hello to all! This is a late post as I did not leave the hospital until about 9:00pm. Uncle Jace and Aunt Dana wanted to be on night watch with Clay tonight. They arrived this afternoon from Omaha, NE. Clay had a busy and great day. He had an early bath and just had some Tylenol for pain. He says that he doesn't hurt, but they give it just in case. Clay had his feed tube, as well as the bridle in his nose, removed this morning. He gagged when the tube came out and almost jumped out of bed when the bridle was removed. He ate so much today and is drinking his supplement liquid (Kid Essentials) in a cup. He had some chicken on his tray for supper (he no longer has to have the pureed diet) and he said, "This....chicken.....is.....good." He was hungry for strawberries, so we brought him some. What a delicious treat! The ENT Dr. from Children's Hospital arrived about lunchtime to replace Clay's trach (pediatric tracheostomy tube) with a smaller one. Clay is able to force air over his vocal chords with this one and so he has talked to us all afternoon. It is wonderful to hear his voice.
Clay walked further today than he has walked since we have been here. He walked from his room to the Burn (in/out patient) Clinic to get fitted for pressure garments. We helped him pull some shorts & a T-shirt on & off we went. The Physical therapist told us that the distance was approx. 340 ft. We had some family and friends arrive during this time, so we all walked with him to the clinic. We were all so happy for him. We also had another friend come this morning and he brought a State Trooper with him. He brought Clay a special bag filled with neat things and helpful info.
We are thankful for you all and are thankful that we can carry all our worries and fears to God. We are so thankful that He is guiding and giving "daily" strength. Good Night.

Wednesday, May 27

Hello to all! This is DeeDee again. Since we are able to be with Clay 24/7, it's hard to remember all the events in a 24 hour time period. I was allowed to help Clay with his bath yesterday, but not today (depends on the tech). He came back from his bath sitting on a rolling chair with a smile on his face; so, the bath wasn't so bad after all. I had asked the doctors last Friday if they could take Clay off of some of his anti-nausea medications. Since he was vomiting with the medicines, I didn't think it would hurt to vomit without them. I didn't want so much medication in his little body, especially if it didn't seem to be helping the problem. The doctors said that they would discuss it. A day later, a gastro doctor from Children's hospital showed up. He ordered for Clay to be taken off all of the anti-nausea medication for three days. If he is still vomiting, after three days, he will be given a different medication. Clay went for a ride around the BICU today and waved to everyone. One of the ICU nurses noticed that Clay's feed tube was out too far (as he drove past her in the little jeep). The doctors came to his room this afternoon to see if they could push it back down. This was uncomfortable and made Clay gag. An x-ray showed that the tube was not down far enough. The feed tube will be removed for a day. Clay may not have to have the tube put back through his nose, if he is able to keep his liquid down. We are hoping for no vomiting during this time. He will also get a smaller trach tomorrow.
He had a lot of fun with O.T & P.T today. It is amazing how independent he is already becoming. I'm going to get some rest. My mom is at the hospital tonight and I'll arrive early in the morning to take over. Thanks for all your encouragement, it is such a help to us.

Tuesday, May 26th

Hello everyone. Clay had a restless night and I finally let him get out of bed to sleep in my lap for the last hour. He was determined to pull the covers over his head all night. At 5:00 a.m. the night nurse announced that he was on the schedule at Children's for a 10:00 test procedure. This changed some of our plans. I stayed in Dallas with Grandma to make sure I was there when he went over to the other hospital for the test. Deidra left Olney as soon as the boys were on the bus and she made it to Parkland in time to run up six flights of stairs and ride over with all of us before the test. The team from Children's were great. Dr. Johnson did the procedure and was pleased with what he saw of Clay's upper airways. He said Clay is going to have to start exercising his mouth and get it stretched out. It was to tight for them to open and they had to run the scope in through Clay's nose. They finished the test quickly. He was returned to Parkland, and as soon as he started to wake up he went to the tank for a bath. Mom was allowed to go in with him and I left Dallas heading back to Olney. I will check in with DD after Cody's baseball game and add any additional details. More later, Thanks. Cody played his last machine pitch game of the season. DeeDee is having trouble getting her car started. Clay is not worried about either of the aforementioned. He walked unassisted to and from the playroom this afternoon. He was very hungry when dinner was served. There was a tomato sauce with some meatloaf and he ate all of the sauce and part of his meatloaf and indicated that he wanted Grandma to get more sauce. He had some small pieces of peaches and several drinks of apple juice. We love to see an appetite develop and we hope it all stays put. He is improving each day and we are thankful for all of the prayers. Thanks to everyone that keeps up with his progress.

Monday, May 25th

Good evening to all. Hope everyone enjoyed the holiday. Carson and Cody enjoyed it at school while they made up a bad weather day. Clay had a wonderful day. He spent a good night in Grandma's care and was awake at 6:00 this morning. Around 8:00 he indicated that he wanted to get out of bed so he got in his wagon and we went down to the play room for a little recreation. He stayed in there for about 30 minutes and then went back to his bed. At noon he got up and walked down to the tank for his bath and wound care. He was taking tiny steps and his nurse Natalie asked him if he could walk like a dinosaur. He immediately started taking much larger strides. He returned from his bath driving the car in the hall. He was cleaned up and stepped out of the car and walked unassisted to his bed. He was placed in bed for all of 10 minutes. He decided the lure of the car was too great and he indicated that he wanted to get back in. I helped him out of bed and he walked to his car got in and drove back to the playroom. Upon arrival he really got busy. There is a play stove and cook top and he cooked several items for grandma and I to sample. He was cooking me a hot dog in the oven and the wiener fell out when he handed it to me. I showed him what happened and he took it and placed in the sink and indicated that he had washed it off and handed it back. He then took all of the play plates and placed them in the sinks and pretended to wash each one and put them up. The boys and I need him home because we are not very good dishwashers. He then went to the table in the play room and played a matching game with Grandma and I. He was the winner. I carried him back to his bed and he was content to be off his feet for a bit. When I left he had a bowl of apple sauce and his personal spoon and was really giving it a good tasting. We are happy to see him eat anything because it has been so long since he has. He is scheduled for a test at Children's tomorrow. We are not certain we are going to do it because he seems to have made such progress today. I am headed to the hospital for the night to relieve Grandma and let her get some rest. Thank you Joy/Grandma we could not have made it this far without your help. Thanks to all and good night.