Clay's updates

January 4, 2012 Happy New Year!

2012-01-04T15:38:00.013-06:00

Larisa and Clay

Here is a picture of the PA cleaning the tissue expander

port before inserting saline into expander. As you can see,

the skin is expanding and the doctor can then surgically stretch Clay's

hair further back on top of his head.

Did you begin to think that we were not going to post on Clay's blog again? We haven't forgotten, just haven't taken the time to update for about 3 months!! I began to think that I might need to tie myself to my computer chair so that I could sit down long enough to post an update. Of course, it's always hard to remember all that has happened (during the past 3 months) when I procrastinate like this.

Hmmmm?? Where to begin? Last year (2011) seemed to fly by faster than the year before. It's hard to believe that it has been almost 3 years (Feb 14, 2009) since Clay's accident. Three years ago, we were wondering if we would/could ever survive such a tragedy. Here we are in 2012, and Clay is thriving - thanks to God!

Chance posted our last update on October, 14th. I'll give a few highlights of the past months. This past October, Clay had the privilege of meeting Larisa Hertz at one of our church conventions. Larisa was burned in an accident in the Fall of 2009. She & her family have become very special to us; as, she can empathize with Clay and vise versa.

November:
* Carson turned 13! We now have a teenager in the house and a son who is now taller than me (mom). If he grows into his long feet, he'll soon be taller than dad.

* We were asked and invited by The Transplant Services Center of UTSW Medical Center to attend "A Celebration of Thanksgiving For the Gift of Transplantation Medicine". Clay was recognized as a "skin donor recipient" (during Clay's first few weeks in the Burn ICU, his burns were covered with cadaver skin until the doctors could graft his own skin over the burns). It was very touching as the families of the donors were recognized. We had an interview with channel 4 (Dallas); then, Chance & Clay said a few brief words of thanks onstage. We had a pleasant surprise in that we had the opportunity to meet LTC (Ret) Brian Birdwell who is also a Texas State Senator. He is a burn survivor; as, he was in the Pentagon on Sept.11 during the attacks. His book, Refined by Fire, is a soldier's story of 9-11. He also has "Face the Fire Ministry" in Granbury, Texas. We also had the opportunity to meet his wife and brother(a Tarrant County Judge). Very special!

* We spent the Thanksgiving holidays on the Texas coast at Pappy & G'ma's.

* We were also invited to a Trans-Siberian Orchestra concert. Katie Crosbie, from Channel 3-Wichita Falls, invited us to attend and gave us tickets. Clay was taken on stage at the end of the concert, took a bow with the band, and was given an electric guitar signed by the band. The boys also received T-shirts and CD's. That was an exciting evening for the boys!

December:

* Busy month with the holidays, etc.

* Most of Chance's family lives within an hour from us. We spent Christmas eve/day with his family. We didn't have to travel far. We made a couple trips to Dallas for Clay's tissue expansion. My older sister and her family spent New Year's eve/day with us.

January: Here we go....into a new year.

* Our county stock show will be held in two weeks; and then off to the major shows. Cody has been looking forward to showing again this year.

We had an appointment in Dallas yesterday. Clay's doctor put another dose of saline in his expander (we have been driving to Dallas every two weeks for this). We discussed Clay's next surgery & have another appt. in two weeks. His next surgery may entail: 1. moving expanded hair further back on his head 2. taking rib cartilage to reconstruct his ears 3. more work on left hand. We will discuss a surgery date at his next appointment.

Life is precious and Clay's positive disposition inspires us! Happy New Year to all!

~The Fite Family (Chance, Deidra, Carson, Cody & Clay)

2011-10-14T11:03:00.002-05:00

Good Morning,

Time seems to fly by and we apologize for taking so long to update. Clay underwent surgery on Thursday September 29th. This was the procedure that was canceled earlier in the month. The doctor worked on his hand , mouth, neck, and head. At this point he is back in school and seems to be doing fine. The second graders have a competition for UIL story telling. Clay is trying out for the team. I bet if he could tell about his life experiences he has more than the average second grader to draw from. He is excited about this opportunity. He will go back to Dallas on the 17th of this month for his first injection into the scalp expander. The doctor plans to put 400 to 450 cc of fluid in between now and Christmas. The next surgical procedure will be to move the existing hair around on his head. I hope this short note finds everyone well. We are thankful to all who pray for and encourage Clay and our family. Take Care

2011-09-13T14:11:00.004-05:00

Hello to all. It has been sometime since I posted on the blog but I wanted to update everyone on Clay's non procedure yesterday. As some of you know Clay was scheduled for his first surgery of the new school year on Monday the 12th. The doctor planned to place a tissue expander under his scalp to start the process of covering his head with hair, work on his left hand to open up the webbing and increase the use of his fingers, and work in and around the mouth and chin to release some scar bands that continually pull his lower lip down and prevent him from opening his mouth very wide. To sum it up quickly, it did not happen. We arrived at Children's hospital in Dallas at 7:00 a.m. Clay was quickly checked in and we went to the pre-op room to wait our turn. Clay loves the hospital because it offers some amenities he is not accustomed to at home (Cartoons) Clay watched and waited patiently and contentedly for over three hours until his doctor came in to prep and analyze him for surgery. When the doctor entered the room Clay's demeanor changed instantly and he realized the fun was over. As the doctor left and the nurse prepared to wheel him to the O.R. Clay told Deidra and I that he felt sick. We assured him it was just nerves and he would be fine. We told him it was just like all the other times and he would go to sleep and we would be at his bed when he awoke. The older he gets the more he dreads the procedures. They wheeled him of to the OR and Deidra and I went down stairs for a cup of coffee. We no more ordered our drinks and were seated when I received a call saying the physician needed to see us. We rushed back up and the surgeon met us and said there was nothing to worry about but Clay had become sick at his stomach upon the onset of anesthesia. He was of the opinion it was nerves and wanted to proceed but the anesthesiologist would not proceed with the surgery for fear of aspiration if Clay was ill again. Procedure canceled. We were told they wanted to observe Clay for a few hours to make sure he was OK. When we went in the recovery room he was more than OK. He was sitting up ready to eat Jello, Popsicles, Apple Juice, Etc. and asked when we could go eat and go home. We asked him if he was nervous about surgery and he said yes and he thought if they put the expander in his scalp he might not be able to swim at spring break. Mom told him if we did not have this done now he may miss an entire summer of swimming. We are waiting on a new schedule, apparently O.R. time stays pretty booked. We are going to try a different approach and premedicate in the pre-op room to see if we can ease his mind a little until they get him asleep. All things happen for a reason and apparently yesterday was not the day for Clay to have his surgery. I hope all is well in your part of the world. We will add more details and a date for round two when we learn more. Take Care.

Friday, August 26

2011-08-26T09:41:00.013-05:00

At our friend's ranch in SE Colorado

Cody with his frogs

Clay with his frogs

Colorado

Hello to all! Once again, we haven't posted an update for quite awhile. Now that school has started, we may have more time to post. The boys had an nice summer. Clay's favorite activity was swimming. We are in a severe drought along with temperatures in the triple digits; so, Clay did most of his swimming in the late afternoon/evening hours. We spent some time on the coast in South Texas at Pappy & Grandma's. We enjoyed our church convention in July. The boys also enjoyed the show/musical "Texas" (Palo Duro Canyon State Park) with family and friends. They thought it was really cool that one of their cousins was part of the show this summer. We escaped the heat, for a little while, with a trip to Colorado; and, enjoyed our time with my sister & her family.

Carson is in the 7th grade this year, Cody 4th grade, and Clay 2nd grade. They have enjoyed their first week of school; although, Cody is our little "homebody" and would rather be at home than at school. Clay came home the first day of school and said "I love school"! Clay's next surgery is scheduled for Sept 12. Dr. Trussler will place a tissue expander under the little bit of hair on Clay's scalp. As we begin to fill this expander and it gets larger, we are thinking of different types of hats that he might be able to wear during this time. Dr. Trussler will also perform surgery on Clay's left hand and do some work around his mouth/lips.

Clay's attitude towards life continues to teach us so much. We were at a 4-H event a few weeks ago, and a family sat down across the table from us. The minute their child saw Clay, this child wanted to leave the table. With what ensued after that, I was on the verge of tears. I told Chance that I needed to go sit in the car until I stopped crying. I cried harder when Clay patted my arm and said "It'll be ok, mom". When Carson asked why mom was crying, Clay answered "She's crying because a kid thought that I was scary". Here's Clay who has been through so much and who's appearance is changed forever; yet, he was the one comforting us. We have prayed earnestly that God would "keep" him through all that he will face in future days. This strength that he has, only comes from God. So thankful for God's presence.
Clay was swinging with his cousin this summer, and a girl jumped off the swing beside them and said "I can't swing with burned kids". Clay walked away with his head down; but, a few minutes later he was playing again. Our cousin told us about this incident days later. So thankful for Clay's resilience and kindness. I pray that any unkind words, comments, stares, or unkindness from others would never squelch his spirit. We are thankful for the many who see Clay for the person he is, along with his big heart.

I am posting a picture of Clay with some frogs he shot. There was a silent auction at one of our recent 4-H fundraisers. Clay saw a rifle in the auction he thought he had to have. He was pulling on Chance's arm saying "Please (bid)write my name down, dad". Chance's response was "Son, I'm not going to pay that for the rifle". When Clay heard the announcement that the silent auction was over, he put his head down and cried. Three men from Graham, TX purchased the rifle for Clay. They noticed how much Clay wanted the rifle and made sure they secured the bid. They brought the rifle to our table and sat it in front of Clay. Clay raised his head and quickly dried his tears. All the way home we heard from the boys in the back seats; "Dad, can we shoot the rifle when we get home? Dad, can we look at it again before you put it up? Dad, can we shoot a deer? Dad, can we go rabbit hunting? Dad, will you take us hunting tomorrow? Dad...Dad....Dad....". Chance took Cody & Clay (Carson was busy) to the tank (pond) in the back pasture and the picture shows the frogs they got with dad's help. They were able to sneak upon a rabbit too. No, we did not have frog legs for supper. :)

Children's Medical Center's Plastic Surgery Department has asked if Clay would be one of their co-captains for Children's Red Balloon Run & Relay in October. The name of the team is "Fantastico Plastico". If any in the Dallas area are interested in the run/relay, we'd love for you to be a part of our team. 100% of the proceeds raised by the team will benefit Children's Medical Center's Plastic Surgery Department. redballoonevent.org

I did not intend for this to be so long. Hope all is well with each one of you. Thanks again for your care. ~The Fite Family (Chance, Deidra, Carson, Cody, & Clay)

Tuesday, June 7, 2011

2011-06-06T21:34:00.013-05:00

Cody playing golf in the Tower Extrusions Golf Tournament.

Clay playing golf.

Boys fishing

Clay's baseball glove

Brothers

Hello to all. Once again, it has taken us awhile to update the blog (2+ months). Clay is away at burn camp this week. Chance & I were hesitant to send him, but Clay was very excited about going. It does ease our minds knowing that nurses & therapists from the burn unit will also be at camp. Clay had his most recent surgery 2 wks ago (May 25th). His Plastic Surgeon pulled up his lower eyelids by attaching the skin (tissue) to the bone on outer edges of eye-socket. He also released scars below Clay's nostrils, between eyes, one side of mouth and small area on neck. Needless to say, Clay had stitches all over his face & his eyes were swollen for days.

Clay has been wanting to play baseball all year; so, Chance coached his baseball team this past Spring. Clay was named the best "one-handed batter" on the team. We had a special glove made for him at the Nokona glove factory in Nocona, Texas. It has a special sleeve that he wraps around his forearm to keep the glove on. Carson & Cody played baseball too & enjoyed it. I'll post some pictures of the baseball trio.

It has already turned out to be a really hot summer with temps in the triple digits. Our two chickens and rooster are big now, and the rooster crows all day! Choco (our Jack Russell) & the rooster do not care for one another. The rooster chases Choco & shows him who's boss. Choco keeps his distance. ~Hope you all are having a wonderful week~The Fite Family

Thursday, March 24, 2011

2011-03-24T08:19:00.008-05:00

Carson & Cody with Carson's steer at Houston Stock Show.

Carson is behind his steer and Cody is holding his ribbon.

Good morning! Just thought I would give a quick update. I have posted a picture of Clay's neck. As you recall, this was his most extensive surgery (Dec.). The contracting burn scars had caused his chin to contract to his chest. Looking at the picture, you will be able to see how much his neck released. This skin flap was taken from his right thigh and and surgically attached to blood vessels in his neck. It has healed really well.

The boys had their Spring Break last week & we went South (to the coast) so they could see their grandparents & go to the beach. Chance, Carson, & Cody were at the Houston stock show the week before Spring Break (this was the last stock show for us this year). Carson's steer made the sale. Cody was in tears when he realized that he would not be able to bring his steer back home, but would have to say goodbye to him. Chance brought some calves from the back pasture to the barn; the boys will start working with these calves to get them gentle for next year.
Clay has another appointment next week with his doctor. At this time, we will plan his next surgery & he will be fitted with a mouth splint. It will be necessary for him to wear this splint to prevent the corners of his mouth from contracting again.
In our last blog entry, we mentioned that Clay bought 2 baby chicks. Well, those baby chicks are not so tiny anymore and outgrew their box really fast. Chance may be forced to build a chicken coop soon. :) No more "cute, fuzzy, soft" chicks.....now it is "scratch, peck, & run" when the boys try to pick them up. We hope you all have a wonderful day! Thanks again for your care! Love from the Fite Family (Chance, Deidra, Carson, Cody, & Clay)

Monday, February 21, 2011

2011-02-21T13:40:00.006-06:00

Hello to all! As most of you already know, this past Valentine's day was the two year mark since Clay's accident and he also had his most recent surgery on the 14th. His trach tube is out and he is doing great! Last Monday, the ENT doctors examined Clay's airway under anesthesia and removed his trach tube Tuesday morning. They monitored him Tuesday night and we came home Wed. afternoon. Clay's plastic surgeon (Dr. Trussler) released the scars on the corners of Clay's mouth - made incisions on both sides. The procedure was called a "commisuroplasty". Before the procedure, Clay was not able to open his mouth wide enough for us to see his teeth; and now we can see his teeth. At our follow-up appt. in a few weeks, they will make him a mouth splint to wear at night. I was a little nervous about how Clay would do without his trach tube; but, he has had no problems physically or mentally and the stoma (opening in his neck where the trach tube was) has already closed. We will be making plans for his next surgery when we see his doctor again in a few weeks.

Carson & Cody did not make the sale at the Ft. Worth or San Antonio stock shows with their steers. Looks like they will be taking their steers to the Houston stock show(in March). We also have 2 new additions to our 'animal farm'. Clay bought 2 baby chicks at the feed store a few days ago. The boys named them but I forgot the names-I'll have to ask again when they get home from school. The chicks were the last thing we needed, but they are really cute.
Cody will turn 9 yrs. old this Wednesday (23rd).
Thanks again for all! Love from the Fites (Chance, Deidra, Carson, Cody, & Clay)

January 21, 2011

2011-01-21T12:35:00.005-06:00

Hello to all & thank you again for your care. Clay's neck & donor sites are healing well from his recent surgery (Dec.). He did have some sutures that were supposed to dissolve but did not. His body had a reaction to them instead, and several areas on his leg (donor site) were inflamed. After a trip to see our doctor, this past Monday, our minds are now at ease.

Clay will have a documented sleep study within the next month or so. His next surgery is tentatively scheduled for mid to late February. The ENT doctors want to take Clay to O.R. & scope his airway (under anesthesia). If all looks good in the O.R., they will take Clay's tracheostomy tube out & then keep him in the hospital for a few days to monitor him. Clay's doctor (Dr. Trussler) will release scars at the edges of Clay's mouth during this same time. To prevent Clay from having to go under anesthesia more than is necessary, Clay's doctor & ENT doctor will perform his next surgery/procedure simultaneously.

Our county livestock show is this week. Cody is old enough this year to show animals and is very excited about it. Carson & Cody will show their pigs this afternoon and their steers tomorrow. I will post some pictures of Clay's "new" neck when I get a chance to. Thanks again for all & Take Care!

Surgery Update 12/22/2010

2010-12-22T08:58:00.005-06:00

Hello to all,

Clay underwent an 11 hour surgical procedure on Tuesday December the 14th. The official name for it was a free muscle or myocutaneous flap with microvascular anastomosis, in layman's terms. They took a large portion of full thickness skin and a portion of the muscle from his right thigh and transplanted it to his neck and chin. This piece of skin was attached microscopically to the existing blood supply in his neck. They attached the veins to the new skin flap to feed it and let it grow with him. He also had two tissue expanders in each shoulder. These were removed and the expanded skin was spread out across a portion of his chest and shoulders. The combination of these two procedures seem to have given Clay alot more room in his own skin. When they made the incision under his chin through the existing burn scars, Clay's neck came up 15 centimeters, (nearly 6 inches) this is amazing to see in that he now has a semblance of a chin and neck which we have not seen in a long time. The trach which was situated right below his bottom lip now looks like it is at the top of his chest. We thought this might be removed during this procedure but due to safety concerns and caution the Doctors elected to leave it in a little bit longer. Clay spent two nights in ICU; and, was then moved to a regular hospital room for 5 days. He is now using a walker to maneuver around until the donor site on his leg heals. We arrived home Monday afternoon. Mom (Deidra) stayed at the hospital for the week, while Grandma & I traded places back and forth with Carson and Cody. We are thankful for all of the prayers, meals, visits, and concern of friends and family. Clay has a strong little spirit and we have learned much by being with him. We would like to wish everyone a Merry Christmas and a Happy New year. We hope 2011 holds nothing but the best for all.

With sincere thanks,

The Fite Family

Saturday, November, 27

2010-11-27T18:20:00.014-06:00

Stayed at the Swan Hotel

The boys visiting the cockpit during our flight.

Boys with Debbie (Clay's nurse at Children's clinic)

Chance & boys (Animal Kingdom)

The boys with Mickey & Minnie

The boys and myself with Kidd Kraddick (thanks, Kidd)

Southwest Airline's Kidd's Kids plane

Boys with Beauty & The Beast

Hello to all, we hope you had a happy Thanksgiving-we have so much to be thankful for. We wanted to let you know that Clay's surgery date has been changed to Tuesday, December 14. Our scheduling coordinator had to change the date to accommodate an additional physician. With this being an extensive procedure, two Plastic Surgeons will be in the O.R. Clay is scheduled from 11:30am-7:30pm in the O.R.(8 hr. surgery with many hours of anxiety in the waiting room).

We've recently returned from Walt Disney World in Florida. Clay was chosen for a special trip for terminally & chronically ill children (Kidd's Kids trip). Our nurse, at Children's hospital, told us about the trip and asked us to fill out an application. She told us about the trip this past Spring and begged us to send in the application before the August deadline. She was very persistent, and her persistence paid off. We mailed our application, and found out a few weeks later that Clay had been chosen. I believe there were 52 families chosen. It was an incredible trip for us & we are thankful that we were able to go. Some videos and pictures can be seen at kiddskids.com & I am posting a few of our own on the blog.

Carson turned 12 yrs. old last Saturday (Nov. 20th). It is hard to believe he's already 12. Our boys are growing up fast! We want to cherish these special years!

We are grateful for your care!

Friday, November 5, 2010

2010-11-04T11:32:00.007-05:00

Hello to all! Once again, it has taken me a month to post. Clay has really healed well from his last surgery on Sept. 27th & is a very active little boy. His next surgery is scheduled for Dec. 13th. The scheduling coordinator had to block out a full day (8 hrs) in the O.R. for this next surgery. It will be his most-extensive surgery so far & I am worried about him being under anesthesia that long. Our Plastic Surgeon will release his neck. The tissue expanders, on his shoulders, will be taken out and the expanded skin will be brought across his chest (below his trach). The Dr. will then take a large, full-thickness, skin graft from Clay's right thigh and place it under his neck.
The contracting scars have pulled Clay's chin down to his chest. He did have a neck-release surgery last year, but his scars were still in the maturation stage. As long his scars were maturing (18months-2years), they continued to contract. Clay's scars are almost fully mature (with the exception of a few). Since they are now mature, we will begin to see big differences with his surgeries. Some have wondered why Clay had so many surgeries during the "scar maturation stage" and he had to have those surgeries to keep functional. We will meet with our Plastic Surgeon on Nov. 30th and discuss surgery details further. Many have also asked if Clay's trach will be removed during this surgery. Clay's trach will NOT be removed at this time. It will stay in place until he gains enough extension in his neck for safe intubations during surgeries.
Clay and I (mom) attended the World Burn Congress in Galveston, TX a few weeks ago. He met some new buddies there. We also enjoyed our recent Fall church conventions. Clay also showed his miniature steer at our county "prospect" show last weekend. Cody showed his steer, too. It was good practice for both boys.
A nice thought passed on from our recent church conventions was this: "Our thanks is the only thing God doesn't have, until we give it to Him." I want to give my thanks to God everyday. We feel like we can't give much in return for all that has been done for Clay; but, we can give our thanks. We thank you for all!

Sunday, October 3, 2010

2010-10-03T22:51:00.006-05:00

Hello again to all. We are going to post & give an update on Clay's recent surgery; but first, we wanted you to know that we received tragic news today. Dr. Purdue (co-director of Parkland's Burn Unit for 22 yrs.) died this morning. He was riding his motorcycle and was hit by a 24-yr.old drunk driver. Our hearts are heavy & the tears won't stop. Dr. Purdue (& his team) were the first ones with Clay when he arrived on Care Flight at Parkland last year. He did the majority of Clay's surgeries and his expertise helped save Clay's life. We will forever be grateful for everything he did & I only wish I could tell him again how he touched our lives. We were looking forward to seeing him at Clay's next burn clinic appointment.......he will be missed very much. We pray for his family, too.

Aside from this sad news, Clay's surgery went well. Clay had an early morning surgery & the doctor let us come back home that afternoon. Clay has to keep his left leg in a splint (straight) for 3 weeks; but, he is allowed to walk on it. The doctor also took a large, keloid scar off of his stomach and performed a Z-plasty on a scar on his back and under left arm. The Z-plasty is a plastic surgery technique that is used to release scar contractures and improve function. Clay was not in a condition to go to school last week; but, he is ready to go to school in the morning. His teacher came to our house to do his lessons this past week & his therapists came to see him. We are grateful again for each one involved in his recovery process and care.

We also want you all to know how thankful we are for you. We do not want precious moments to slip by without expressing our thanks.
Amidst the tears I have cried today, a hymn came to my mind and reminded me again of the importance of TODAY because we may not have tomorrow. ~Deidra

"Today is mine, tomorrow may not be.
How brief this life, how long eternity!
Swiftly & surely sands of time will run-
Finished earth's day, eternity begun.

Today is mine to do His righteous will
And self deny, His purpose to fulfill;
Today is mine to find this source of rest;
Doing His will we prove His will is best."
(Hymns Old & New)

Thursday, September 9, 2010

2010-09-09T21:33:00.011-05:00

Hello again to all. School is in full swing and Clay loves school! He just attends for half a day but wants to go full days. He loves to get on the bus with his brothers in the mornings and I pick him up at 11:00am. First grade has lunch at this time, so I arrive each day just before lunch period. Clay has eaten in the cafeteria a couple of times with one of his therapists. This therapist wants to go to the cafeteria with Clay a few more times before he eats there on his own. She (therapist) says it's tricky for him to grasp his lunch tray. She is not comfortable yet with letting Clay go on his own (I'm not either). He would love to go each day to the cafeteria, but doesn't want me (mom) by his side everyday. He wants to have the freedom to go on his own. Clay does get to go to the cafeteria in the mornings and sit with his friends until it's time to go to the classroom. Cody has been a big help with Clay at school. Carson is now in the Jr. High school; so, Cody is Clay's "big" brother when they are at the Elementary school.
Parkland hospital may come and present a "school-reentry" program for Clay again. He seems to be very comfortable in his classroom and with his teacher. His teacher this year is the same one who came to the house last year for his "homebound" studies. Several of Clay's little friends are in his class, so that helps. Clay has also started piano lessons this year. Although he will not be able to play much with his left hand, he is excited about learning. His piano teacher has taught for many years and has been very helpful. Carson took piano lessons from her for 5 years. Her husband is Cody's piano teacher.
Clay's next surgery is still scheduled for the 27th. Although, we have discussed a few changes with his Plastic Surgeon. Initially, the plan was to place a tissue expander under the scalp, excise a scar on his back, excise a scar band on back of knee, take tissue expander out of leg, and wrap the expanded skin around the back of knee. This surgery plan has changed some. One of Clay's therapist has monitored him in the classroom. It was noted that Clay could be more functional if the scar bands under his arms could be released. Also, Clay has been favoring his right side as he walks. He says that it hurts to stand up straight because of a contracting scar on the right side of his stomach. Therefore, his doctor will release scar bands under his arms and on his stomach and work on the knee (as originally planned).
Although life is busy, we don't want to forget that our strength comes from God. We are thankful again for your thoughts and prayers. Sincerely, Chance, Deidra, Carson, Cody, & Clay

Monday, August 16

2010-08-16T22:51:00.006-05:00

Hello to all! Well, once again, a month has already slipped by since we last posted. We enjoyed our annual church convention in July. Carson & Clay went to South Texas again, the week after convention, with my sister and aunt. Cody wanted to stay with us & enjoyed all the special attention without his brothers around. My older sister and her family had to fly back to Argentina on Aug.2. They spent most of their summer in the states visiting family & friends. They get to move back to the U.S. next year & it will be nice to have them back home. We enjoyed our time with them this summer.
We took a family vacation to Colorado on Aug.5. My twin sister and her family live in Denver & there's so much to do around that area. We enjoyed the cool mountains and came back to Texas to face triple-digit temperatures. Clay enjoyed the cooler temperatures the most! A strong storm moved through our area while we were on vacation. We found the boy's swingset in pieces when we arrived back home, and an insurance adjuster is coming in the morning to asess our roof damage.
We met with Dr. Trussler (Clay's Plastic Surgeon) on Aug.3 and his next surgery is tenatively planned for Sept. 27. Dr. Trussler will take the tissue expander out of Clay's leg, remove the scar band on the back of his knee and wrap the expanded skin over that area. He will also excise a scar on Clay's back. This is the scar that itches the most and is very bothersome to Clay. Dr. Trussler will also place a tissue expander under Clay's hair at the front of his scalp. I guess it's time to start expanding his hair. I didn't exactly know how to react when the Dr. mentioned this; but, Clay started bouncing up and down and said "Yeah! Now I can be an alien for Halloween! Oh, and mom, could you tape two antennae to my expander?" If you can picture this......it will look like Clay has a bubble on the front of his head. Our reactions were both so different-Clay was excited and I was worried.
Clay will have his largest surgery (neck) closer to the Christmas holidays. Dr. Trussler wants to keep the tissue expanders in Clay's shoulders until December. We will put the last dose of saline in the shoulder expanders this week. Then Dr. Trussler wants to keep them under the skin for 3 more months. This will enable the stretched skin to become stronger. I hope this makes some sense. Sometimes it is difficult to explain. All these procedures, that were once so foreign to us, are now what we have become accustomed to. As a result, my explanations may be as clear as mud to you.
School starts next week. Carson will be in Jr. High, Cody will be in 3rd grade, and Clay will be in 1st. Clay will only attend school for half a day. He can still be qualified as a "homebound" student if he attends no longer than half a day. We need the "homebound" services for when he has his big surgeries this year. We are praying & trusting that God will show us what to do about our "school" situation.
I need to post some more pictures when I get a new camera. I accidently dropped my camera into a bag that I was delivering to Goodwill. The camera and memory card are gone. The memory card had pictures of Clay's hospital stay, and pictures throughout this past year of his recovery. I called the Goodwill store and went and searched through boxes myself; but, to no avail.
Thank you again for your continued care-we are grateful! Take Care!

Tuesday, July 13th

2010-07-13T13:16:00.003-05:00

Hello to everyone still watching this blog. Clay turned 7 years old yesterday. He gave us a little scare last week and we were not sure he was going to be out of the hospital in time to celebrate. He spent some time in South Texas with his brothers and cousins recently. Upon his arrival home on Wednesday night he felt a little warm and feel asleep during meeting. The next day he slept late and we went to a benefit lunch for him in Graham. As we were going in to eat Deidra noticed he was holding his left hand. When asked about it he told us it hurt and he thought it had a sunburn. We looked it over and noticed it was swollen and there were red streaks starting up his forearm. He was lethargic during lunch and we called his surgeon in Dallas to determine our course of action. He asked that we bring him to Dallas to the E.R. as quickly as possible. When we arrived he had a temperature of 102.2 and was quickly placed in a room and put on an I.V.
We spent Thursday, Friday, and Saturday nights at Children's in Dallas. The doctors are still not certain what type of infection he had acquired but by Saturday he was back to his old self and spent the majority of the day exploring the hospital. We think he captured too many frogs while at Corpus. We asked him about this and he said, " There weren't many frogs there this time but I caught a bunch of toads." Anyway he is home on an oral antibiotic and does not seem to be suffering any ill effects. As soon as they had his fever under control Clay really enjoyed this hospital visit, it was the least painful trip he has ever experienced. Everyone is busy at the Fite house. It seems as if this summer is flying by. Hope everyone is doing well and maybe we will see you somewhere soon.

Friday, June 11 (2010)

2010-06-11T10:09:00.020-05:00

Lt. Zach Hart & Lt. Austin Hendrickson helping Clay "fly" in the simulator.

Cody in flight simulator

ENJJPT Class 10-06

Thank you for serving our country!

Clay & Cody with 2Lt. Austin Hendrickson

ENJJPT(Euro-Nato Joint Jet Pilot Training) Class 10-06; Katie in white; Cody& Clay in front; Chance & myself standing between Major Scott Segal & 2Lt. Austin Hendrickson along with all the other special pilots.

Clay trying on a helmet

Clay in the flight simulator

Sign that we passed when we entered the base.

Hello to all! Yes, once again, it has been awhile since we have posted any news. First of all, I have uploaded some pictures to Clay's blog. One of the pictures is included with the previous posting (in April). It is a picture of the boys (and a cousin) standing behind Clay's miniature steer. The group of pictures, included with this post, were taken yesterday. We were invited to Sheppard Air Force Base yesterday evening. Katie Crosbie with Channel 3 in W.F. has been following Clay's story since his accident. She has now become the boy's adopted aunt :-) and she accompanied us. She is friends with many of the airmen at the base. One of her friend's, 2Lt. Austin Hendrickson, wanted to do something special for Clay & his brothers. Austin, along with his ENJJPT Class 10-06, planned a special evening for the boys. They served pizza for dinner & as Clay was eating his pizza, he said "Mom, it's like we are having a pizza party!" They gave them a framed T-38 picture (signed by the pilots), shirts, and patches. They took us to the Sims (simulators) where Cody & Clay got to "fly" for awhile. Then they let the boys try on the helmets and parachutes. We were able to walk out to the flightline to look at a T-38. Last, but not least, we got to go to the RSU (Runway Supervisory Unit) to watch the night take-offs. What a once-in-a-lifetime experience and what a top-notch group of gentlemen! Thank you for this! You all may be wondering why Carson (our oldest) wasn't mentioned; but, he is enjoying his time at one of our church conventions in Colorado (he'll return home on Sunday). Believe me, Cody & Clay will be ready to tell him about their experience with the pilots.

Clay had his first dose of saline placed in his tissue-expanders on May 24th. The PA and nurse taught us how to insert the saline at home. This is helpful because it saves us from having to drive to Dallas on a weekly basis. Chance helps me do it each time because I don't like to insert it on my own. Cody helps as well & gets the supplies together(it's a family affair). The port to the expander on Clay's left shoulder has slipped under the expander and will have to be surgically repositioned. Clay's next surgery will be next Friday (June 18). Dr. Bidic will perform surgery on both of Clay's hands and reposition the tissue expander port. He will deepen the web space between Clay's fingers on his right hand; and, he will have to do some skin grafting on Clay's left hand as he deepens the web space and releases a scar band. This will not be Clay's last surgery; but, it will be our last with Dr. Bidic. We will meet our new Plastic Surgeon this same day (recommended by Dr. Bidic). As I mentioned, Dr. Bidic is moving to the East coast & a new Plastic Surgeon will take over Clay's care.

All in all, everyone is doing fine. The company that Chance works for (Tower Extrusions) had their annual Jr. Golf Tournament last Saturday. The boys enjoyed it and Clay played too. Last year, at this time, we said that Clay would probably never be able to hold a golf club again. He proved us wrong and amazes us in so many ways. Many lessons have been learned from him. Carson's orthodontist told him that it is time to put braces on his teeth. Carson will have braces put on in a few weeks. He never could wait until he got braces, and now he's not too sure about it.

We want you all to know how thankful we are for your continued encouragement. We always mention that we will try to post more often, but life doesn't slow down much (and we are not sure how many still follow this blog). I'm reminded again of one of the boy's favorite hymns "Time is fleeting, flowers are falling, Life will soon be past; Pause and ponder where thou goest: Time is flying fast".

Heartfelt thanks from the Fite Family!

Friday, April 30

2010-04-30T13:48:00.009-05:00

Hello to all~once again, it has been awhile since we have posted any news. Clay had his surgery yesterday morning and we were able to bring him home last evening. Today was a day of rest and healing for Clay -he was in bed for most of the day and likes it that I (mom) brought him everything he needed. :-) Clay rarely complains about pain but this surgery seems to be the most painful, so far, for him. Doctor Bidic placed three tissue expanders under his skin during the surgery. Clay has expanders in his shoulders and one in his left leg(below the knee). The incisions need time to heal before the skin expansion begins; therefore, it will be about three weeks until we put the first dose of saline in the expanders. His left leg is bandaged and wrapped in a splint. His shoulders have bandages as well. We will go back to the doctor next week to have his dressing/bandages removed. At the hospital, a PT helped Clay learn to walk with a walker. A little walker and wheelchair were delivered today because Clay is not to put any weight on his left leg until the incision is healed. The discharge orders also state that he is not to do strenuous activity for 3 weeks. We may be looking at a loooooong three weeks. :-) After this, Clay will have the expanders for up to 6 months with weekly saline injections! For all of you who will be seeing him this summer, he may look a little "puffy".
We received sad news from our plastic surgeon (Dr. Bidic) this past month. He is moving to the East coast in June (we wish him the best but will miss him greatly). We met with him a few weeks ago in Dallas and discussed our options. We will not make any decisions until we know what is best for Clay. Clay will have another surgery with Dr. Bidic before he moves, and we hope to have it scheduled for the end of May. Dr. Bidic will do another surgery on both of Clay's hands.

Clay was being too rowdy a few weeks ago; so, I told him that eating a piece of broccoli would calm him down. Carson and Cody don't mind eating broccoli but Clay doesn't like it. It took him about 10 minutes to swallow his small piece of broccoli. I told him that if he got too rowdy again he would have to eat another piece. He calmed down quickly!
Clay also got hit with a baseball on April 1st (not a joke). Cody accidentally hit a foul ball and it hit Clay's left eye. He wanted to practice baseball with the boys and ended up with a black, swollen eye.
Cody and Clay got to show a miniature steer a few weeks ago at a steer show in Stephenville. Chance was allowed to help Clay show his steer and then Cody got to show it by himself in front of a different judge. Clay got second place in his class and Cody got third in his class (two different judges). It was good practice for Cody since he will be old enough to show animals, through 4-H, this next school year. Clay received a $3.00 check and was so excited. Uncle Mike, Aunt Susan, Chloe, Uncle Justin, Aunt Heidi, Lily, Cadence, G'Pa Jake and Karen all came to watch the boys show their little steer. I may have to post some pictures of that on here....
I didn't mean for this to get so long. It is almost midnight, so I need to close for now. We will continue our sporadic posts and want to thank you again for your care! Hope you all have a wonderful weekend!

Wednesday, March 31, 2010

2010-03-31T10:49:00.007-05:00

Hello to all! Once again, sorry for not posting in awhile. If we would post more frequently, we would not have to try to remember all the events of the past weeks. Seems to me that our days are passing by so quickly and I want God to show me how to make the most of every moment. I also feel the need to clear my head and thoughts often. Last month, we forgot my mother's birthday and this month we forgot my mother-in-law's birthday!! We called my mom after her birthday and I cooked a meal for my mother-in-law Monday evening (three weeks after her birthday)~Goodness!! So, if we happen to forget your birthday.......it is not intentional. :-)

Clay had a follow-up doctor appt. last Monday (22nd). A small area around Clay's donor site was infected; so, we were glad to see Dr. Bidic and have him take care of it. We are thankful for Dr. Bidic (Clay's Plastic Surgeon) and for his two Physician Assistants (Kaylee & Savanna). Clay's next surgery will be April 29th at Children's in Dallas. Dr. Bidic will place expanders under the skin on his shoulders and an expander in his left leg. Clay still has his trach and it cannot be removed until he has more mobility in his neck. The scars still prevent him from tilting his head back. Having the trach in place enables the doctors to safely intubate him for surgeries. Once the expanders are placed under the skin, saline will be added weekly to expand his good skin. The expanders will be in for several months-until enough skin is expanded to bring around to the front of his neck. The same thing will be done for the scar band behind his left knee. He may look like he has shoulder pads this summer-"saline" shoulder pads. :-)
We have had warm days this week and Clay has started saying "I'm hot" and looking for shade.
It is almost time for his lesson with his "homebound" teacher, so I will let this be all for now.
Thank you for your continued care and kindness~you are special to us!

Monday, March 15th

2010-03-15T14:58:00.003-05:00

Good day to all. Clay has all of his stitches out from his last surgery. He and his brothers have gone to South Texas for a week of spring break. When I spoke with Deidra this morning they had been to the beach yesterday and were capturing tree frogs in Pappy & Grandma's yard this morning. Dana (Deidra's twin sister) and the girls are there from Omaha and I am certain there are no dull moments. Clay is scheduled for another surgery toward the end of the month. They are going to have to do more work on his neck to allow him to lean his head back farther before the trach can be removed. He splashed in some waves while wading with his cousin. Mom was a little anxious about him getting too deep, but he seems to know he is not ready for that yet. I know that this is a brief post, but I wanted to let everyone know that Clay is all little boy and doing well. Thanks to all.

Monday, March 1st

2010-03-01T15:59:00.003-06:00

Hello to everyone. Clay had a surgery on Friday, February 26th. They worked on his nose, mouth, and chin. We were scheduled for the O.R. at 11:15 but the surgery did not start until 1:15. We had several areas of concern that we showed the surgeon before they went in and he decided to spend the extra time while he had Clay under anesthesia and address one of them. Initially they were just going to work on the webbing around the bridge of his nose and release the scars around his mouth . The goal is to have him open his mouth wide enough for intubation on future surgeries. With this in mind they were able to add about 1 cm to the opening on each side of his mouth. The area we were concerned about was below his bottom lip. The surgeon was able to take a full thickness layer of skin from below his waistline and graft it in under lower lip. He sewed a bolster in over this graft to protect and support as the new skin has a chance to adhere. To give you an idea of what Clay looks like it appears he went several rounds with a professional boxer. He has stitches all around his nose and mouth and Saturday he was swollen to the point where he said it hurt to swallow. Some of the swelling has started to go away and he is now able to enjoy a , "soft diet." I stayed home with him yesterday (Sunday morning) and his appetite has returned with a vengeance. He is one tough little boy. He looks pretty rough but he is scheduled back to Dallas Friday to have the stitches removed. I know this is short but I wanted to let everyone know how he is doing. Thank you to all who have expressed their care and concern.

Thursday, February 18, 2010

2010-02-18T09:16:00.006-06:00

Good morning! We did not get a chance to post on Valentine's Day. As we think of this past year, our hearts are filled with thankfulness again. Thank you for all who have journeyed with us, helped, and encouraged. Thanks again, too, to my sisters for starting this blog - what a help it has been!
We have sent out many letters and still have more to send. Thanks, too, for all (from blog) who e-mailed us your addresses-this was very helpful. If anyone you know wants a letter or hasn't received one by next week, please let us know (we posted our e-mail address in a recent post). If anyone received a letter and didn't want one, we apologize. As we go through our lists, it is hard to determine who would like a letter or not. We do not want to skip anyone and will send out as many as we need to.
Chance and Carson are at the San Antonio Livestock Show. Cody is at school, Clay is waiting for his therapist to arrive, and I am washing clothes & addressing envelopes.
Clay and I drove to Dallas last Wednesday for an interview at UT Southwestern Medical Center. They are working closely with the Phoenix Society for Burn Survivors to develop a web-based social skills training program for successful community re-entry among burn survivors. Clay sat outside the studio with the secretary, during the interview, and played with a toy helicopter. They wanted to know if people ask questions when we are out in public and if it makes us feel uncomfortable. They also wanted me to share some of our experiences we have had with people staring and what we do when people stare. I told them some of our experiences and told them that we love it when others talk to Clay instead of just staring. Some have treated him as if he is contagious, and this breaks our hearts. I think I mentioned one time that we tend to surround ourselves with others who are comfortable with Clay. This helps Clay; because, these kids play with Clay and these adults see him as precious Clay & see a vibrant 6 yr. old. In public, when others are kind to Clay, I thank them. When others are not very kind, I pray for them. Sometimes I get anxious when we are in a new situation and I feel like a mother bear protecting her cub (not acting like a mother bear but protecting like a mother bear-bears can get mean but we certainly do NOT want to be mean to anyone). We do want to thank you for your kindness.
We had some of our ministers for supper and night on Monday. They were here for our Wichita Falls Special meeting last night and will be going to the other special meetings across Texas during Feb. & March. Cody's 8th birthday is next week (Feb 23) and so I am making plans for a special b-day. I was not able to be with him last year on his birthday, so we are thankful that we can all celebrate it together this year.
Have a wonderful day!

Monday, February 9th

2010-02-08T10:12:00.002-06:00

Good morning to all. This is Chance. I don't have much to report but thought I would drop a quick line. Clay is a little under the weather. He played outside a good bit on Saturday and probably had too much cold, damp air. He had his cast removed last Wednesday. They made him promise he would not be wild and the doctor told him he would have to take it easy for a couple of more weeks. He was playing with the neighbors and they were running and playing chase. His mother reminded him about his promise to the doctor. Clay responded, " I know, I know but it is so hard to be careful." He has not let much slow him down. Clay's little bug that canceled his last surgery has finally gone through everyone in the family. I was the last and it hit me last week at the Ft. Worth Stock Show. We all survived, but Deidra was having to do a lot of running to keep everyone where they were supposed to be. I believe that we posted February 19th as his next surgery date. This procedure has been moved to the 26th of this month. Continuing school, therapy, and day to day activities keep us all busy. Deidra will be sending the promised letter out this week. We will call it a Valentine/1 year update as it will have been one year since the accident this Sunday. Hope everyone is doing well, take care.

Friday, January 22

2010-01-22T10:42:00.008-06:00

Good morning! We were hoping to be able to give you all an update on how Clay's surgery went this morning; BUT, there was no surgery. Clay was sick to his stomach twice last evening, on our way to Dallas. We called his doctor and he said it would be a wise idea to reschedule his surgery (Mama called the doctor and the doctor said......). Also, the anesthesiologists would not have anesthetized him for surgery because of the vomiting. We turned around and came back home last night. Clay slept soundly throughout the night and says he feels better this morning. I fed him a light breakfast and.....so far so good. :-) We just received a message that Clay's surgery has been rescheduled for Friday, February 19 (at noon).
Chance and Carson are at our county stock show today. Carson will show his pig this afternoon and his steer in the morning. Cody is in school today (next year he will be in 3rd grade and will be old enough to show as well). So, depending on how Clay is feeling, we will head to the show when Cody gets home from school. Clay says that he is feeling better and keeps asking "Can we please go to the stockshow?" (Little turkey-does he really have a stomach bug or did he have a plan up his sleeve to get out of the surgery???) No, seriously, he really did not feel well last night.

Also, I haven't forgotten about the letter we promised. It was mentioned, in a comment, that this letter will now be a Valentine letter. So we will just call it our New Year/Valentine letter. :-)We just never seem to have time to turn on our computer. I have the pictures inserted into a document and saved; but, there has been a problem with saving them in the right form. After 4 trips to Kinko's, I think we have it figured out. Now, we are addressing each envelope when we get a spare moment. We do not want to miss anyone! Although, there have been just a few that have posted on the blog and we can't figure out who you are by just seeing your "blog" name. Please send us your mailing address (cdcccfite@hotmail.com) if you think we are confused about your "blog" name. We are going through our blog list, "thank-you" list, church-meeting list, town list, hospital list, girl list, boy list, etc., etc., and every other list we have to make sure we have covered everyone (making a list and checking it twice).
Thank you so much again for your care (and patience with the letter)! Thinking of all the ones in Haiti and others in "trying" times. Makes us thankful again that ALL this is in our Father's hands and makes us thankful for our privilege of prayer. ("Prayer is a mighty source of power")

Friday, January 15th

2010-01-15T11:20:00.002-06:00

Hello to everyone. Clay broke his left arm. He has a new red cast that he is really proud of. He was playing tug of war with his puppy on the snow and ice after Christmas. He slipped and landed on it and broke two bones. He favored it but it did not slow him down. As he continued to protect it we became worried and took him to our local doctor for an x-ray. Definitely broken. He and Deidra went to Dallas to see an orthopedic at Children's. They put the new cast on and told him to wear it for three weeks. It seems that in the scope of things the arm was mild in comparison to what he has been through. He is back home and doing fine. Still on schedule for the surgery on the 22nd. Good days to all.

Wednesday, January 6th

2010-01-06T10:30:00.005-06:00

Good Morning to everyone. There has been a large gap in time since the last post and all of the Fites have been very busy. We were able to travel over the holidays. We had the opportunity to put faces with some of the people that have grown so dear to us through this experience. We went North to Omaha, NE and were able to visit/meet some dear friends in Wichita, KS (family and friends of Larisa Hertz who has spent many days in an ICU burn unit). The boys enjoyed the biggest snow in the last twenty years. They played outside everyday and would come inside looking like a Popsicle. Clay was right in the middle of the fun. We had to tape his glove on his left hand. After that problem was solved the snowy world was his to enjoy. They did not really want to come back to boring Texas, but upon arrival, they were amazed to see that we could not pull in our garage because of the snowdrifts. After a brief stay at home we made a quick trip South for the new year. Clay made a special friend at convention this year and we went to Austin for a couple of days so Clay could see Tucker and we could visit his family. All are home now and back in school. Clay had an appointment Monday with the plastic surgeon that is doing most of his procedures. He had not seen his finished product on the neck and was pleased with the results. His goal now is to work on the nose and mouth. If he can offer Clay some relief in these areas, and the ENT Doctors approve, the next milestone for Clay will be the removal of his trach tube. Clay has already informed us that when that thing comes out and heals we need to find him a swimming pool. We have a tentative date for his next procedure set for the 22nd of this month. I used to keep a close count on the number of surgeries he has had, but I seem to have lost count. Deidra is still working on the New Year letter. Please don't give up-it is a major undertaking because we do not have much spare time to work on it . We hope the New Year finds everyone well and are thankful that we can start it out with our entire family at home. Thank you for all of the prayers and encouragement during 2009. We will try to post more frequently or when something newsworthy occurs. Take Care, Chance

Monday, December 21

2009-12-20T22:02:00.012-06:00

Hello to all! We just wanted to give a quick update on our doctor visit this past Thursday. The skin grafts that we were worried about looked great and adhered perfectly. We were told that it was normal for the top layer (of skin) to slough off - this was the part that we were so worried about. We are very relieved and are thankful for the great job that Dr. Bidic did. We are also thankful for Kaylee and Savannah (Dr. Bidic's PA's) who have helped so much with Clay. We are still keeping a light dressing over the neck and treating the areas of hypergranulation (overgrowth of granulation tissue) around Clay's trach.
On one of our frequent trips to Dallas, a few weeks ago, we took Clay to Parkland to see the nurses in the Burn ICU. It was great to see them and they were glad to see Clay. We were also able to attend the monthly "burn support group" meeting at Parkland hospital this past Saturday. Two OT therapists that helped Clay, while he was in the burn unit, attended the meeting. We told them "thank you" for being so aggressive with Clay's therapy from the start. We now understand that Clay's therapy is so essential throughout the healing process and beyond. Thank you to all the therapists who have and are working with Clay.
We hope you all have a wonderful week and nice holiday! Thank you again - our hearts are filled with gratitude.

P.S. We will be sending the letters within the next few weeks - thank you for your patience with us! :-)

Wednesday, December 16

2009-12-16T11:47:00.006-06:00

Hello to all! I had a minute so I wanted to post an update and apologize for our sporadic postings. As you recall, Clay had his neck release surgery on Nov. 9. He had a wound vac dressing on his neck and carried the pump with him for about a month. During the month of November, we took him to Dallas for four dressing changes. They had to sedate him each time they changed it; therefore, it was basically like a day surgery (OR, anesthesia, recovery room, etc.). On December 3, they took him back to the OR and placed skin grafts over the Integra (neck) and then placed the wound vac over the grafts. We took him back to Dallas on Dec. 9 to have the wound vac removed. He was so relieved to have it off that he was jumping around saying "I'm free, I'm free." The grafts still needed to have a dressing over them for awhile and we were told how to do this dressing change at home. Clay's PT comes to our house on Thursdays; so, she helped us with the first dressing change. She was able to come back to our house on Friday (Dec. 11) to help; and, we ended up calling and sending pictures to Clay's doctor because there were areas of the grafts that were not adhering. We have continued to change it each day and we are not sure if there is enough skin attached to grow and cover the neck area. We go back to Dallas tomorrow (Dec. 17) and the doctors will tell us more. We are not sure, at this point, if they will have to place another skin graft on Clay's neck. There are also some areas where the tissue is hypergranulating (big word I learned this past year).
This is the last week of school before the holidays. Carson & Cody have early release days tomorrow and Friday. Clay's homebound teacher was able to complete his lessons on Monday and Tuesday. Depending on the weather, we may be going to Omaha, NE next week to see Jace & Dana (my twin sister, her husband, and girls). We also would like to stop in Wichita, KS to see the family of Larisa (a friend that was burned in October). We have been following her blog since her accident http://www.larisahertz.blog.com/. We want to thank each one of you for your encouragement this past year.
We are planning on sending a "New Year" letter out with pictures of Clay's progress & pictures of Carson and Cody. I'm sure that you all would like to see the progress that Clay has made since February. Since we do not feel comfortable in posting his pictures online, we will send these letters via "snail mail". :-) Thanks for everything!

Friday, December 4th

2009-12-04T16:39:00.005-06:00

Quick update before the day slips away. Clay's surgery went well yesterday. So well that he has been at home with Mom all day today. We had planned to spend last night in the hospital, but the Physician's Assistant came out of the O.R. and told Deidra and I that Dr. Bidic thought Clay would be able to go home after the procedure. They took two strips of skin from his upper right thigh and placed them over the Integra on his neck. We anticipated them being very painful and they were. They placed his wound vac back on his neck to keep the grafts in place. When he awoke in the recovery room he immediately started complaining and crying that his leg hurt. Our recovery nurse was very attentive to his pain and put several doses of pain medication into his IV to get it under control. Clay was disappointed that he was not going to stay in the hospital overnight, because he wanted to watch cartoons and eat popsicles in his hospital room. Mom and I were not disappointed at all. We left the hospital around 6:00 p.m and arrived home a little after 9:00. Clay had one bout with nausea on the trip home but it quickly subsided and some food seemed to solve the problem. He slept well at home and rested all day. He asked this morning if his brothers had school today? When I said yes he told me, "I need someone to play with." We would like to offer a special thanks to all of the Doctors and staff at Children's that have helped Clay. We appreciate the care he has received and the extra efforts that have been made on his behalf. Thanks to everyone keeping up with Clay. We will post more specifics when we can.

Wednesday, December 2

2009-12-02T10:21:00.003-06:00

Hello to all! Clay and I went to Dallas on Monday for his dressing change. He is scheduled for surgery tomorrow (Thursday) at 1:00pm at Children's Hospital of Dallas. He has had a wound vac on his neck for about 23 days now. If you recall, it takes 3-4 weeks for the Integra product, on his neck, to generate a dermal-like tissue & accept a skin graft(http://www.integra-ls.com/). They will take skin grafts from his legs (donor sites) and place them on his neck tomorrow. From his 4 month burn unit experience (Feb.14-June 15), these donor sites have proven to be the areas where he has experienced the most pain (superficial wounds). I think about the times when I have accidentally cut my legs, when shaving, and how painful it is. Clay will feel this pain on large areas of his legs, because they will shave the top layers of skin off to place on his neck (thank goodness for pain meds at this time). He underwent many surgeries, in the burn unit at Parkland, for skin grafting. This will be his third surgery since he was released from Parkland in June and his second "skin grafting" surgery outside of the burn unit. We hope he recovers well. Remember all the weeks when he vomited while he was in the burn unit & we couldn't pinpoint what was causing it? Clay has had four dressing changes since Nov.9, and each time they change the dressing an anesthesiologist has had to sedate him. He did okay with the the anesthetics used on the first 3 dressing changes, but he was sick all the way home on Monday because of the anesthetic used. We will ask what drug he was given before surgery on Thursday.
Thank you for remembering Clay and our family this past year-we are grateful for each one of you!

Sunday, November 29th

2009-11-29T20:54:00.002-06:00

Hello to all. I hope that everyone had a wonderful Thanksgiving. We had a nice day and are so thankful to be home and with all of our family. You don't appreciate the small things until they are taken away from you. It is good to have all three boys underfoot. We usually head to South Texas for Thanksgiving but we had it in Olney this time. There was plenty of good food and we enjoyed the visit with everyone who came. Clay and Deidra are headed back to Dallas tomorrow, minus grandma who has been here helping, to have a dressing change done on his neck. We are not sure of his next surgery date but we expect to have it set after tomorrow's visit. The wound pump that Clay carries with him is very temperamental and we have usually exhausted our tricks trying to keep it functioning between the dressing changes. Clay seems to be doing well. On Thanksgiving day after lunch his brothers and cousins were playing in the arena. Clay said he was going out to play. We watched as he scaled two pipe fences with his wound pump tucked in his backpack. When he reached the ground on the other side he took off running to join the fun. Apparently all the therapy is paying off. He eats like a horse and is very active. We realize that there are still many battles to be fought but we know that the Lord has a plan for Clay's life and we as parents have to help any way we can. We miss all of the contact with everyone who graciously comments on the blog, but we are thankful that God and Clay are steering us back toward a semblance of normalcy. Take care, and we are always thankful for the prayers, help, and encouragement we have encountered on this journey.

Thursday, Nov. 12

2009-11-12T18:05:00.003-06:00

Hello to all! Sorry for the delayed post. Clay had surgery Monday of this week at Children's Medical Center in Dallas. He arrived at 11:00 a.m. and went into the operating room at 12:30. He was in the O.R. for about 2 hours and in the recovery room for another hour or so. The procedure was done to release the burn scars on his neck and chin. As we have said in the past all burn scars contract and for the past months Clay has been unable to raise his head. He really had no chin or neck to speak of. His skin had pulled his lips and chin down to the point where there was only a centimeter and a half from his chin to his trach. After the surgery there were 13 centimeters separating the trach and the chin. When they let us come into the recovery he was still asleep from the sedative. Deidra and I were shocked and thrilled to see him sleeping on the recovery bed with his head stretched out and lying flat against the bed. We have become so accustomed to him walking around with his little head down that we had forgotten what his regular head and neck position was supposed to look like. Clay had a little bit of more good luck in the operating room. Clay has had a loose tooth for quite sometime and he would not let anyone help him pull it. During surgery he lost this tooth and one of the doctors told us that the tooth fairy came to the O.R. and left him six dollars and put his tooth in a jar for him. The doctor was very pleased with the procedure and told us that the Integra product was the way to go because he was not limited by lack of skin(you can google this product sometime-it's pretty interesting). Clay is wearing a Wound Vac pump over the bandage and a C collar neck brace. The wound vac attaches through a hole in the neck brace right above where his trach comes out. The Wound Vac provides constant suction to the wound and Clay will carry this machine everywhere he goes for a month. These are quite a few contraptions for a 6 year old. On Tuesday the resident doctor told us that we could plan on going home. We anticipated discharge around noon. To make a long story short we had to wait on a portable Wound Vac pump and were not able to leave the hospital until 11:15 p.m. on Tuesday night. This made for a late night or early morning back to Olney. We are thankful to be able to spend a few days at home. Deidra and Clay are back to Dallas tomorrow (Friday) for wound care. Clay will have to be sedated and it will be like a minor day surgery to do his dressing changes. He is very uncomfortable and hopes the time goes by quickly until the next surgery when they will graft his skin over the Interga on his neck. He will have to wait for four weeks until the next procedure. We are thankful that he is progressing and we truly appreciate all of the help and prayers of family & friends.

Saturday, November 7

2009-11-07T10:31:00.006-06:00

I had a few minutes this morning, so I wanted to post something that touched my heart. Cody, Clay, and I were sitting at the dinner table last night (Chance was in Oklahoma for business and Carson was at a 4-H judging contest). Cody was worrying about Clay's surgery on Monday & was also wondering if he could just miss a few days of school to sit with us at the hospital. I reassured him and told him that there was no need to worry about tomorrow until tomorrow comes. I then said, "And this could be the day that the Lord returns." Then Clay said "Oh, I hope this is the day because then I will have a new body." The things that children say touches the depths of our souls.
We will get Carson & Cody to school Monday morning and then head to Dallas. We are to be at Children's Hospital by 11:00am. Clay will have his pre-op and then head to the O.R. at approximately 12:30pm. We are not sure how long the surgery will take, but he will stay in the hospital overnight. My twin sister has been really sick; so, my mom is in Nebraska helping them with our nieces. My mom has been away from home so much this year-thanks, Dad, for holding down the fort while she has been away. The boys will be staying with some friends here in town. We are grateful that we have many wonderful friends willing to help with Carson & Cody. Thank you so much! We are very thankful for all the help and encouragement near and far.

Tuesday, November 3rd

2009-11-03T13:58:00.002-06:00

Hello to all. We had some good news and a bit of a surprise yesterday, and wanted to keep everyone posted. Clay and Deidra went to Children's in Dallas for a follow up appointment. They were hoping to be put on the schedule for the neck release. We felt that time was of the essence and we were not sure we were going to be able to have it done before December. Deidra called yesterday around 1:00 p.m. and said that they have scheduled the neck procedure for next Monday, November 9th. We are thankful they could accommodate us and give him some relief sooner than we anticipated. The doctor was pleased with the results of his work on the hand. He has written orders for Clay to see a hand specialist for rehab. Deidra is trying to set up those appointments today. Deidra and Clay are staying busy with doctors, rehab, and school. Cody and Carson are just busy being second and fifth graders. Carson is on his way to a livestock judging contest this weekend at Texas A&M. I am trying to get our cows AId and hopefully sow some wheat if it every dries out enough to get back in the fields. Hope everyone is well. Thanks for all your help and comments. Come see us whenever you can.

Wednesday, October 28th

2009-10-28T11:32:00.003-05:00

Hello to all. We realize it has been a while since we have posted. Don't think we have been idle. Last week was quite busy for all the Fite's. Clay completed his 40th trip to the hypebaric oxygen chamber. He now is able to sleep a little later each day. On Wednesday Deidra, Carson, Cody, and Clay packed up and headed to Mt. Peak Convention near Midlothian. On Thursday Clay had double doctor appointments in Dallas. I left Olney about 5:30 a.m. and picked them up at the convention grounds. Carson and Cody stayed at convention under the watchful eye of relatives. Our first appointment was at Children's where Clay had the cast he has been wearing for the last 6 weeks removed. We then were able to see one of the hand specialist who removed the pins from Clay's fingers. Clay handled the procedure well, but Mom took it pretty hard. After the pins were removed they built Clay a new splint for his left hand. He is supposed to wear it whenever he is not exercising or bathing. It is still very sensitive to touch and he is pretty protective of it. He has been working his good finger and we hope he will soon be able to hold something between it and the part of his thumb that remains. We indicated to the physicians assistant that we would like to be put on the schedule as early as possible for the next surgery. They are going to try to block out some operating room time and Clay will go back on November 2nd to find out what the plan is. After our visit at Children's we went to burn clinic at our old home Parkland. We were able to visit with Dr. Purdue and let him know what our plans were. He was very helpful and is willing to act as a consultant on the upcoming procedure. We value his many years of burn experience. After our burn clinic visit we raced back South to convention and were able to catch the last speaker of the afternoon meeting. I was able to stay until after the last meeting and then drove back into Olney for work the next day. DeeDee and the boys had a good day Friday and I drove down early Saturday to rejoin them. We enjoyed the opportunity to see everyone that was so helpful during Clay's hospital stay. Saturday was very memorable in that Carson made his choice that evening. We are very happy and excited for him and are looking forward to meeting tonight for his first testimony. Busy days for all. We appreciate all the thoughts and continued prayers of everyone. There were so many at convention and elsewhere that we have never met that have been praying for Clay. We are humbled by the experience and will be eternally grateful.

Photography Fund Raiser

2009-10-10T10:51:00.002-05:00

Hello everyone this is Jenae....

I got a message from my friend, Shanda Miller, who is doing another photography fundraiser for Clay.

Here is the letter and information that she sent me:

Jenae,

Annie Drake and I have rescheduled our photography fundraiser for the Fite Family for November 7th. Could you please post it on Clay’s blog again like you did last time?

Thank you so much! We just really want to help them!

Just wanted to let everyone know about a photography fundraiser for the Fite Family. Annie Drake and Shanda Smith will be having sessions on Saturday, Nov 7th in Grapevine, TX. Please visit www.ShandasShots.com for more information.

Thanks, Shanda

Thursday, October 8, 2009

2009-10-08T21:27:00.013-05:00

Hello to all! We mentioned a few months ago that we would post more frequently, but that has not happened. We want to thank you for your continued thoughts and prayers. Clay's eyes, hand, and donor site seem to be healing well from the surgery he had on Sept. 18. If you place your hands under your eyes and pull down hard, you will have an idea of what Clay was experiencing before his surgery. The skin grafts placed under his eyes are full-thickness skin grafts (contains all the layers of the skin including blood vessels); therefore, theses grafts are less likely to contract.
Clay has skin grafts on about 65% of his body (chest, back, head, face, hands, and a portion of his left leg). These grafts are split-thickness grafts (top layer/layers of skin only) and these types of grafts really contract because they do not have the elasticity that full-thickness ones would have. Therefore, this makes his skin resistant to stretching and prevents his normal movement. The scar formation has pulled his chin down to his chest & his bottom lip is almost totally inverted. Clay's next surgery will be a neck release. They will cut into those scars to release them and this will give Clay the ability to lift his head. I am not a doctor, but I have explained some of what we have learned with Clay.
We went back to the doctor about 2 wks. ago (Sept.28) and they cut his cast off to look at the pins in two of his fingers. The doctor wanted to keep the pins in for 3-4 more weeks; so, Clay got to pick the color for his new cast. He picked a "fluorescent" yellow-he can't hide with this one. :-) After two weeks of wear, his cast is now a dull looking color (it's hard to keep little boys' casts clean).
Chance gave us quite a scare on Sept. 24. We were getting the boys ready for school and Chance told me he thought he was having the symptoms of a heart attack. We called his cousin who is a doctor in Seymour (30 miles away) & he told me what to do and that he would be waiting for us at the emergency room. Some of our neighbors came down to get Carson & Cody to school and to watch Clay. Of course, by this time, the boys and I were all in tears and I was trying to reassure the boys that everything would be okay. Chance's cousin (Dr. Martin) had all the tests run on him and everything looked fine. Could have been angina, pleurisy, indigestion...... Could it have been caused by the stress of the past months? He will go back for a stress test soon. We are just so thankful he is feeling better. We also celebrated Chance's 40th birthday on Sept. 27th. We had a potluck birthday party at lunch and then a surprise party that evening. He was surprised! Now he's "over the hill" and feeling fine!
Carson showed a steer at the Texas State Fair last Thursday (Cody will be old enough to show animals next year). It was our first trip to Dallas, in a long time, with no doctor appointments or hospital stays. After the steer show, we had an appointment at the Ronald McDonald House of Dallas. They wanted to interview our family for their Fall newsletter. It was special to see the wonderful staff and volunteers again.
We continue to drive to Clay's therapy appointments 2 days a week and have therapists at our house 2 days a week. Clay is enjoying his schoolwork and "homebound" teacher. He is enrolled in a Kindergarten teacher's class at school and this teacher sends all of Clay's lessons with the "homebound" teacher. The homebound teacher takes his work back to his Kindergarten teacher to grade and then returns it to Clay. He really likes to look at his graded papers~it makes him feel like he is part of the class. He looks forward to his brothers coming home from school each day because he's always ready to play.
Thank you, thank you, thank you again! We will never be able to say this enough for all your care, prayers, support, and kindness. ~Chance, Deidra (DD), Carson, Cody, & Clay Fite

Tuesday, September 22nd

2009-09-22T10:24:00.002-05:00

Brief note on Clay's surgeries last Friday. Clay spent about 5 hours in the operating room at Children's medical center last Friday, as many of you know. While sedated an Ear, Nose and Throat doctor scoped above and below his trach to make sure everything was in order with his airway. The plastics team spent about 4 hours working on his left hand and releasing under his eyes. We had planned on an overnight stay in the hospital but after the procedure the Doctor told us it might be best if Clay stayed in the hospital for 5 days until the stitches were removed from his eyes and his donor site. Deidra and I were not very excited at this prospect but we thought we would see how Friday night went. After our stay on Friday night we called the doctor and asked to be released. He agreed and we arrived back in Olney around 5:00 p.m. on Saturday. Clay seems to be doing well and is recovering. He is being treated like a little king. We carry him from room to room at his request and Grandma and Mom are at his beck and call. His eyes are not sutured completely shut and he can see over the tops of bandages sewn beneath his eyes, so it is bearable for him. He has kept a good spirit throughout and will return back to Dallas Wednesday of this week to have some stitches removed and visit a trach nurse at Children's. Thanks for all of the thoughts, prayers and concerns. We will keep you posted as progress is made.

Thursday, September 17th

2009-09-17T10:35:00.002-05:00

Good day to everyone. I wanted to drop a quick update on Clay's week. His occupational therapist came to the house Monday morning and did some hand exercises. As soon as he was finished he and his mother packed up and headed to Galveston for a consultation with the plastic surgeon there on Tuesday morning. They were able to meet up with Grandma, "Joy" somewhere south of Olney and she went with them to help out. Tuesday after their visit with the surgeon they went to the beach for a few minutes. It was cloudy and overcast so Clay could run wild for a moment and not worry about the heat or the sun. They took him to lunch at the Rain Forest Cafe, he enjoyed that, they then started home. They picked up grandma's car and made it back to Olney sometime before midnight. Wednesday Clay had physical therapy and school. His therapist worked him hard then his teacher graded some of his papers. We went to meeting in Seymour last night and Clay and Deidra are on their way to Dallas now for a pre-op appointment at Children's at 1:00. What I am trying to say is Clay may need the surgery, that is scheduled for 7:00 a.m. tomorrow, to rest. He and we are staying busy. We appreciated all of the comments on the last post. Please remember Clay tomorrow. They are planning to work on his left hand and place full thickness skin grafts under both eyes. We anticipate the procedure lasting about 4 hours. He will stay in the hospital for observation Friday night. Carson and Cody are at home under the capable care of Grandma. Thanks to all and take care.

Wednesday, September 9

2009-09-08T21:16:00.008-05:00

Hello to all! Life has kept us busy around here. I wanted to post this before tomorrow. A team from the Parkland Burn Unit will be at Olney Elementary School tomorrow (Thurs., Sept. 10 at 1:00pm). They will present a program to help everyone understand about Clay's burns. This will be the first time he has been around all the students and I'm a little worried about it. Parents and others in town are welcome to attend. I feel like shielding Clay from any unfriendly stares or comments; I pray that it goes well. I am thankful for the support of the school and community. Our hearts hurt so much for Clay and also for Carson & Cody. We cry often and sometimes I feel like crawling into a hole to cry; but, we just pray for more strength and keep going forward because we have so much to be thankful for. We want to say thank you to all of the parents who have taught their own children, by example, how to love Clay. Some children keep their distance from Clay & others play with him as if nothing ever happened. We do understand that it is difficult for young kids to understand. We have noticed that the kids who adjust the best (to Clay) are the ones who have watched their parents interact with Clay. We are thankful for the ones who smile, hug, talk, or pat Clay when they see him. We are experiencing what it feels like to have everyone stare when we go places. We are thankful for our family, friends, and community who make us feel comfortable and loved.
The boys have a new puppy. He is a Jack Russell Terrier and a little ball of energy. He chews on anything he can find; so, I'll be glad when he's past this stage. Some friends here in town invited the boys over for a "puppy picking" party. Clay picked the dog and named him; he named him "Chocolate" because he said that the puppy's face looked like chocolate. Our old dog is not very happy about having this new puppy around, but the boys are enjoying him.
Clay will have his first "outpatient" surgery next Friday (Sept. 18). They will perform surgery on his left hand and release his eyes. Clay and I will travel to Galveston next week to meet with a plastic surgeon at the Shriner's Burn Hospital. Thank you to Phil for helping us get in touch with the doctors at Shriners. The hospital in Galveston sustained damage during a hurricane and now they are opening it again. The soonest that these doctors could do any type of release on Clay would be November. We will inform you about decisions made & will know more after we consult with the plastic surgeon. The doctors (at Parkland)are planning on releasing Clay's neck during the first part of October. I'm sure I have confused you by now, but we are just praying that we make the right decisions.
Thank you to all for your continued prayers and care. Hugs from the Fite family!

Friday, August 21st

2009-08-21T21:10:00.004-05:00

Hello to all. There have been many things going on in our life. Summer is winding down and school starts back Monday. We made a trip to South Texas last weekend so Clay could go to the ocean and see Grandma and Pappy. He had a good time and was able to walk on the beach late in the day and fish off the pier at night. There were several people that came to see Clay while we were there. He has gained much of his strength back and decided that it was time to ride a bike again. He has not been on one since the accident. Grandma was filming the first ride, which turned into a race, and she witnessed a spectacular crash. Clay was racing his brothers when he lost control and fell over. He now has scraps on his knee. He was lucky in his landing and does not seem to be suffering any ill effects. We had another surprise while in Corpus. We had contacted the Shriners burn hospital for a consultation and they called the Friday we were there and said they could see Clay on Monday in Houston. We made plans to spend an extra night and drove up the coast on Monday morning to a 1:00 appointment in downtown Houston. The people at the hospital were very gracious and they explained a lot of different thoughts about Clay. The most interesting portion of our visit was what we were told about his left hand. They took X-rays while we were there and thought they could take the remaining portion of the index finger and stack it on the top of the thumb to give it more length and function. They have a plastics specialist that was on vacation. As soon as he returns they are going to explain the case to him and contact use if this is feasible. Clay is already on the surgery schedule for September 18th at Children's in Dallas. They were going to work on the hand and release the eyes. We hope to have discussions this week with the doctor from Children's. Clay went to burn clinic at Parkland yesterday. They want to schedule a neck release early in October. Mom takes him to Wichita Falls every day for therapy. Deidra will homeschool Clay this year. We have also enrolled him in kindergarten but he will participate as a homebound student. Through this program, a teacher will come to the house 4 hours a week and OT/PT will come as well. The teacher that is sent out has to be certified in Special Education. Deidra has her teaching certification (1st grade-7th grade) but is not certified in Special Ed. One of the education diagnosticians mentioned that if Deidra was certified in Special Ed., she could be contracted and paid to teach Clay. Deidra is trying to figure out how she is going to get all of Clay's lessons taught, take him to his daily appts., and be back home to meet Carson and Cody when they get off the bus (along with washing clothes, cooking meals, helping with homework, grocery shopping, etc.) As a family, we will all come together and help (many hands make light work). Deidra mentioned that she would like to have more time to send e-mails and stay in touch. Instead of turning on the computer at night, we try to get as many hours of sleep as we can. Please know that we are grateful for all your comments and care. Hopefully, one of these days, we will have time to respond to you individually. Many thanks to all who have continued to pray. We pray each day for strength from God. We will try to post more frequently after school begins and we get into a routine. Take Care.

Saturday, August 8

2009-08-08T09:45:00.004-05:00

Hello to all! We have not posted in awhile, as we have been busy travelling to Clay's rehab & doctor appointments. Each weekday morning Clay gets into a hyperbaric chamber for 90 minutes. He has been in it 8 times now and will continue for awhile. After his hyperbaric treatments, we travel to the rehab center in Wichita Falls (Mon, Tues, Wed, & Fri). We have been travelling to Dallas on Thursdays (to the Burn clinic); and the Occupational therapist puts a new cast on Clay's right hand each week. We have become attached to all of Clay's therapists in Dallas and Wichita Falls. To each therapist who worked with Clay in the hospital and all the ones who worked with Clay in the outpatient clinic: we miss you. To all of Clay's therapists in Wichita Falls: you already have a special place in our hearts. To all the nurses and doctors who worked with Clay: you will always have a special place in our hearts.
We met with a plastic surgeon last Monday at Children's hospital in Dallas and he discussed the surgeries he could do for Clay. He can help Clay have 50% function with his left hand by performing surgery on his middle finger & the small portion of thumb, to create a pincher. He also discussed how he could surgically release Clay's neck and eyes. We will post specific surgery dates and details later. We also contacted the Shriner's hospital in Houston. We will know next week when we can schedule a consultation with the doctors there.
Clay is still eating very well and keeping up with Carson and Cody. His brothers have been good therapy for him. As a family, we were usually outside a lot & did many outdoor activities. We are now adjusting to a "new normal" way of life - indoors a majority of the time. I had some time the other day to work in my flower beds and enjoyed the sun. Clay can go out in the late evening to play for awhile. As the weather cools down, he will be able to go outside more often (with sun protection). With the 100+ temperatures, we have to be careful that he does not get overheated when we go to his appointments and run errands. We have to spend a little time outdoors each day or else we would go crazy (& Clay needs his vitamin D). We had our first "big" dinner together last evening & the boys helped prepare it. Before the accident, I would have fussed about any mess in my kitchen. Now, I am just glad that we are all together making messes in the kitchen. :-) The time we spend with our children is priceless.
We want you all to know how thankful we are for your care; & please feel free to call, write, or visit anytime. Have a good day!

Tuesday, July 28th

2009-07-28T09:08:00.004-05:00

Hello to everyone. Thought I might drop a brief line to update. Clay is doing therapy daily at the North Texas Rehab Hospital. We all took a few days off and traveled to Happy Convention this past weekend. Clay was quite the celebrity. The gracious friends around the convention built a cool room for Clay to sit in so we were able to attend every meeting. Thank you. Clay played and had time to ride the swing sets late in the day when it cooled off. We were happy to see many of our friends and made and met some new ones. Monday of this week was back to routine therapy. We have a company in town that manufactures Hyperbaric chambers. The owners offered to let Clay use their equipment for oxygen treatment. We went down Monday afternoon and toured their facility and all three of the boys were allowed to get in one of the treatment units. Clay has his first treatment this morning and was excited about it. Thursday of this week it is back to Dallas. We have burn clinic and all of the burn doctors will determine when and where to schedule the next surgery for releases. Clay has an appointment Monday with the plastic surgeons at Children's Hospital in Dallas. They will be looking at hands, head, ears , neck and head. He seems to be getting stronger each day and continues to eat well. He is willing to try about anything and has a good spirit most of the time. We hope everyone is having a good summer and are thankful for all of the support Clay is still receiving. Take Care. The Fites

Wednesday, July 15th

2009-07-15T09:50:00.001-05:00

Good Morning. Sorry about the long delay between post. There are a lot of activities around here, most of them revolving around Clay. We went to burn clinic last Thursday in Dallas at Parkland. Doctor Arnoldo said that Clay is healing but he expects to schedule the first surgery with in the next 3 to 4 weeks. We will go back for another burn clinic visit on July the 30th. Clay had a surprise last Thursday in therapy. The nice folks in the Physical Therapy unit had baked him some cupcakes and he had a surprise early birthday. It was thoughtful of them and he shared his cupcakes with everyone. The rehab doctor wrote us orders for an evaluation at the North Texas Rehabilitation Hospital in Wichita Falls. We went Monday and they accepted Clay and he has therapy there every day this week. It is wonderful having everyone home. Deidra and the boys take him up for his appointments and there are always errands to run in Wichita. We try to help with additional exercises and stretching at home. Clay turned 6 years old Sunday. He wants to thank everyone for the cards and gifts. I am afraid he is going to be spoiled rotten. We had a little party that grew into a large gathering. We had all of his friends from meeting, plus several of his friends from town, and several family members and cousins. He had a good time and needed no help opening gifts or eating birthday cake. Our schedule is pretty hectic but we welcome visitors anytime. Our annual church convention is next week in Happy, TX and thanks to Clay's progress and the help of the friends we are excited about attending. There have been people that indicated they gave blood for Clay in different parts of the country. We are sure we have not been able to properly thank everyone everywhere but we are grateful to all and want to let you know your gifts, thoughts, and prayers are appreciated. Deidra had an opportunity to visit with Kermit's grandmother yesterday. Apparently he has had a tough time since his release from the burn unit in Dallas. He had to go back into the hospital in Austin for some open wounds and has already had a couple of surgical procedures. He was going back in today for some work on one of his shoulders. We know many of you prayed for Kermit and it appears he needs them now as much as ever. Clay has a remarkable spirit and has been teaching his Mom and Dad how to act in some difficult situations. He is a resilient little boy who is really missing his usual outside activities. He tells people that this summer he has a hospital tan. We will try to update more frequently. Thanks to everyone I hope it's raining and cool wherever you are.

Monday, July 6th

2009-07-06T16:13:00.003-05:00

Hello to all. I hope everyone had an enjoyable 4th. We enjoyed the extra day at home with the boys. Clay had a good holiday. He tried to eat as much as possible and nothing was off limits for him. Hot dogs, hamburgers, chips, nachos, cookies, corn, eggs, pancakes, fruit, the list could go on for days. Clay arrived home Thursday and was able to attend Carson's last baseball game of the season. He was allowed to sit in the dug out and sampled one of everything from the concession stand. He was happy to take part and he and Cody had a good time at the ballpark. We went to a cookout Friday and he fared very well there. He is the center of attention and seems to like all of it. There were some fireworks after dinner and he was allowed to sit in a recliner to better look up and enjoy the show. We had some family drive down from Amarillo Saturday and Clay visited with everyone. Sunday we had meeting and a big potluck which Clay thought was perfect. This morning Deidra, Carson , Cody , and Clay left before 6:00 to arrive at Parkland before 9:00 for his first appointment with Occupational Therapy. I know he will work hard. We are amazed at his can do attitude and are starting to realize there is still a little boy with Clay's spirit that has been kept under wraps for 4 months. He told his mother he thought he might be a fireman when he grew up but he sure didn't want to be burned again. He is scheduled back into burn clinic Thursday. All of the doctors will have a look and we will decide what the next step is. This Sunday Clay will have his 6th birthday. What a difference a year can make. Thanks to all.

Monday, June 29th

2009-06-29T08:34:00.002-05:00

Good Morning to all. Clay had a busy weekend at home in Olney. He arrived Friday afternoon and was happy to be home. He had several things he wanted to show off. He had a new purple cast on his right hand, he has quickly learned that it is a club and he used it in our wrestling matches. We stayed around the house most of the day Saturday trying to avoid the heat. My grandfather had his 86th birthday Saturday night and we went to Seymour for the celebration. They had BBQ and Clay ate about 10 pounds. We did not stay long, but when we returned home and Clay was getting ready for bed he needed a little more sausage before he could say goodnight. He enjoyed his brothers and cannot understand why he cannot go outside whenever the urge strikes him. Sunday we went to meeting and had a pot luck lunch after. There are several younger girls there and they waited on Clay hand and foot. He was the king and they were a group of mother hens. He enjoyed playing with all of his meeting friends and it was good to be back with them after a long absence. He and Mom will head back to Dallas around noon today. Clay has a 3:00 OT appointment. Cody and Lizzie Smith are going to help Clay and Deidra while Carson and I stay in Olney. Carson will head to Electra tonight for his first tournament game. Clay has good moments and bad just like everyone but, he is getting stronger by the day. We will continue with therapies at Parkland for a couple more weeks and then we plan to move to the North Texas Rehab and continue the work closer to home. Hope everyone is having a good summer we appreciate every one's concerns and continued prayers.

Wednesday, June 24th

2009-06-24T08:28:00.002-05:00

Good Morning. I have had several request for an update. Clay and Deidra are back in Dallas all week for outpatient therapy. DeeDee's aunt Lorna Powell is staying with them. It is a big help to have someone to drop them off and help watch Clay because we are not comfortable with him out of our sight. He is doing a combination of physical and occupational therapy. It is all hard work but I hope he realizes it is for his benefit in the long run. They are doing a series of cast on his right hand. The grafts on this hand are contracting and this is pulling the fingers up. The cast are working the skin down so he can eventually make a fist with his right hand. With the right hand in a cast and not much use of his left he is hard pressed to do much without help. One thing he has been doing a lot of lately is eating. Apparently he is trying to make up for four months worth of missed meals. He eats about every thirty minutes and seems like he needs snacks in between. We are happy to see this appetite and try to accommodate all request. We have contacted the North Texas Rehab Hospital in Wichita Falls. We would like to get a portion of his therapy done in Wichita because he could stay at home and make the short trip back and forth easily. We will still go into Parkland for burn clinic and consultations on his therapy. Cody is in South Texas at his grandparents and is scheduled to return at the end of the week. Carson spent the first two days of the week with Clay in Dallas but is back in Olney to prepare for the Little League All Star Tournament. Having Clay at home all weekend spoiled us all. He and Mom were not ready to go back to Dallas and I was not ready for them to leave. Hope everyone is having an enjoyable summer. Take Care.

Friday, June 19th Home

2009-06-19T21:31:00.005-05:00

Clay made a triumphant return home today thanks to the many kind hearts in our hometown. He was met out side of town by three fire trucks and two ambulances. With lights flashing in front and behind he was trying to grin from ear to ear. As he sat in my lap, he was wiggling with excitement when the lead truck started their sirens and blew their horn to signal our approach. There seemed to be half the town lining main street as we pulled in. There were signs, balloons and many smiles. Clay's right hand is in a cast, and seems to be out of commission for a while, but he tried to give everyone a wave with what is left of his left. I was a little concerned in the passenger seat because Deidra was driving and I know her vision was blurred by all of the tears. We are so grateful to our community for all they have done. We have all heard that there is no place like home and the Fites agree. Thank you to the firemen and EM Ts that took the time to see a little boy home. Thank you to everyone that came out to wave encouragement for the future. Thank you to everyone at Hamilton Hospital that helped Clay when he was first brought in. Thank you Channel 3 for keeping everyone updated. The list could go on for days, and I am sure to have left someone out. Thank you to our friends, neighbors, and coworkers who have been so gracious. Thank you to Tower Extrusions for standing with us through this trying time. Thanks to Olney. Thank you to all the friends and workers across the country and around the world. Most of all thanks to God for seeing Clay safely back home where we can love and heal and help him grow into a young man. We will be posting a couple of times each week now and whenever something noteworthy happens. We appreciate everyone who was faithful in prayers and comments on the blog. Good night from Olney, Texas

Thursday, June 18th

2009-06-18T21:31:00.003-05:00

Hello to all. Clay had an early morning PT appointment. He worked with the balance board and stretched. He was then allowed to do some type of therapy with the Wii. He went back for his occupational therapy and they worked him pretty hard. The remainder of the day was spent hanging around the Ronald McDonald House. This afternoon when they were cooking dinner he was in the playroom down the hall from the kitchen. When the smell of the dinner cooking made its way down to the play room, Clay said he was starving and took off out of the play room toward the kitchen. He got to the door and started down the hall and turned to his Mom and said, "Let's go, I am following my nose." Tomorrow marks 126 days since he left Olney on the helicopter. We are anxiously awaiting his return tomorrow afternoon around 5:00. What a wonderful day. I am sure he is excited by the prospect but he cannot be any more happy than the rest of his family. We are so thankful that God brought him back into our home. It was touch and go at times, but as scared as we were we always looked toward his return. He is going to face many trials and we can already see some frustration but his spirit and his family will help him get back in the swing of things. We have toyed with the idea of posting a recent photo of Clay on the site. We have sent a few to his friends to help them prepare. Please let us know what you think of this idea. We ask you to realize that Clay is a work in progress. We are eternally grateful to everyone that has helped during this time. We will post tomorrow after his return and then we plan to reduce the number of post to 2 or 3 times a week depending on noteworthy news. Once again thank you and good night.

Wednesday, June 17

2009-06-17T21:39:00.003-05:00

Hello to all! Clay had a busy day for a five yr. old. He gets tired very quickly. I know it will take some time to gain his strength back. My sister drops us off at the front of his therapy clinic, and he is exhausted just from walking from the car to the waiting room. He kicked a ball, played catch, balanced on an exercise ball, had his leg stretched, and had paraffin put behind his left knee during his physical therapy session at 11:00am. He then was hungry for lunch, ate a few bites, and wanted to rest. His OT (occupational therapy) appointment was at 2:00pm and he was tired before the hour was up. The therapists put a new cast on his right hand and it will be cut off on Friday. On Friday, a new cast will be made and left on until next Monday. The scars on his right hand are causing the fingers to hyperextend. This is why casting it is so important. He was hungry for fettuccine alfredo and so we found an Olive Garden. Uncle Justin met us there, so we had a nice visit. Clay got tired in the middle of his meal and wanted to lie down. He went to sleep early; but, not before he ate some of his left-over fettuccine. We have an early OT appointment, so I am going to head to bed, also. He slept really well last night and I hope he has a restful night tonight. Thanks for keeping up with us and for all your care.

Tuesday, June 16th

2009-06-16T20:25:00.003-05:00

Clay had a busy first day of freedom. He had two separate therapy sessions and a picnic lunch in between. During his first appointment with occupational therapy they did very little except measure the different range of motions he had in his arms, hands, neck, face, etc. He had quite an audience for his first trip back to the hospital. His mother parked in the covered parking and they walked across the sky walk to the hospital. Mom told Clay that this is where we had been parking for 4 months. It was a long walk for Clay and he wore down quickly. He slept pretty good last night but he is still a little restless and it is hard for him to get comfortable. After his first appointment his cousins, brother, aunt, and grandma were all waiting for him and they went back to the Ronald McDonald house and met some of our ministers for a picnic lunch in the shade. Once again Clay enjoyed the Cheetos. The appointment after lunch was supposed to be with physical therapy but they had him set up for wound care instead. This was unnecessary but they scrubbed Clay's head until he started to cry to earn their money. He has very little wound care and it is something that we can easily take care of so they said we did not need anymore appointments with them. He came back to the RMDH and played a bit but then he realized how tired he was and when I visited with Deidra at 7:30 he was sleeping soundly. We are so very thankful that Clay is out and we continue to pray for his healing. We are happy and nervous at the same time but we are looking and hoping for continued good days for Clay. Thanks to all and good night.

Monday, June 15, 2009

2009-06-15T21:03:00.004-05:00

Today was an exciting day at Parkland Memorial Hospital. Clay was discharged!! Something we have all been waiting for for a long, long time....121 days, to be exact :) He had a feeding tube in this morning and while we were feeding him blueberries he complained that he was choking on something. The feeding tube had come out and was wrapped around his tongue. It only took a second to have that thing out! We are glad to say that it is out for good...so far. He had to wait his turn for the bath and that seemed to take forever. He was finally able to go bathe around 12:30 or so. He was SO excited. He scrubbed himself good, dad washed his hair and got his trach cleaned and put back in. After the soap was washed off he was covered in warm towels. He put on a button-down shirt, shorts, socks and shoes. It's the first time he's worn shoes since he's been in the hospital. He was even able to zip his own pants. Quite the determined little boy :) He walked out of that room where they take a bath and headed down the hall to the exit. We had to stop him and tell him he couldn't leave until we had signed papers and got the approval for discharge. He was pretty disappointed at that. It took another 4 hrs until we could finally leave the hospital. Just for the record, quite a few patients were discharged today so it was very busy in the BACU. Before we left, Clay, mom and dad walked over to the BICU and told the nurses and others thanks for the great care and goodbye. While waiting for the final papers to be drawn up, grandma, Aunt Jenae, and the rest of the kiddos hauled the "furniture" from the room (that had been collecting for 4 months) down to the cars. That was a job in itself:) He was finally released around 4:30 p.m. and everyone was cheering as he was wheeled out in the required wheelchair "chariot". When he got to the front of the hospital he said, "Hey, look, there's a bird!" He took a deep breath of the outside air for the first time in a long time and said, "Aaahh". He was loaded in the car and we headed to the Ronald McDonald House. He has been looking forward to coming here because of what his brothers have been telling him. They have been wanting to show him around and were trying to show him all the rooms and exciting things all at once. He got to play air hockey in the game room and after a couple games (he won both) he went to lie down because he was exhausted! He has eaten very well since coming here and we hope it all stays down and he continues to get better. Chance and Carson headed back to Olney tonight. When Chance told Clay goodbye Clay asked where he was going. Chance told him, "I have to go back to work, buddy." Clay said, "Where do you work?" This made dad laugh! He will go in for outpatient therapy everyday this week and will get to go home for the weekend. Thanks and hugs to hugs to everyone in the BICU and BACU! We appreciate you. Thanks to all for standing by us during this time - we are thankful for you all!

Sunday, June 14th

2009-06-14T21:57:00.002-05:00

Hello to all. We hope everyone had a good day. Clay did. He made several trips to the playroom and he ate a portion of every meal. We are so glad to see him start to regain an appetite. I think the highlight of his day was the fact that he felt well enough to eat Cheetos. He does not usually get them at home and he relished the first small bag and then told us he could eat another. He waited until he returned to his room and found another small bag and enjoyed every crumb in that one as well. He was orange from head to toe. He helped a great deal during his bath. After he was cleaned up we went back to the playroom. Kevin and Lizzie Smith were there and when I put Clay down he walked to Kevin and gave him a big hug. He enjoys the X-box in the playroom but guest give him a chance to break out the board games and play a bit. We are scheduled for discharge tomorrow. He is going to be headed to the Ronald McDonald house with the trach and the feeding tube in place. I think both of these items are insurance. If he continues to eat the feed tube can be removed pretty quickly. Jenae is en route tonight from Argentina. She and the kids will arrive here at 6:00 in the morning. She is going to stay and help Clay and DeeDee this week while Grandma gathers up a large group of grandchildren for a return to South Texas. Clay felt much more like himself and we appreciate all of the prayers on his behalf. Thanks to all and we will keep you posted as we make our way out of Parkland and closer to home.

Saturday, June 13th

2009-06-13T18:34:00.002-05:00

Good evening to all. This is Chance in Dallas. Clay is hooked up, feed tube, IV, humidified room air. All of the above does not make for a very restful nights sleep. Hard to go back to all of this stuff when we felt we had left it behind. They are taking blood twice a day to make sure his numbers are coming back up. They are still giving some potassium. He had a pretty good day today. He went to the playroom a couple of times, once on his bike and twice on foot. I had the opportunity to pull the trach today. I was amazed at the size of the hole in his throat. It is tiny. If things continue as they are we are looking at discharge Monday and outpatient therapy the rest of the week. We are excited about the prospect and hope he continues to improve. We had several visitors today and this past week and all were appreciated. Clay seems to have wrapped several of the therapist and nurses around his finger and they all stop in to visit from time to time. Tomorrow marks the 4 month anniversary of the accident and Clay has come along way. We are thankful for the doctors, nurses, friends, and family that have helped Clay make it back to here.

Friday, June 12

2009-06-12T22:33:00.002-05:00

Hello to all. Clay had a long day. His day began with his trip to Children's hospital. We (Childlife Specialist, a nurse, and myself) rolled Clay over to have his GI test done. I was standing at Clay's head and watching the camera screen. The radiologist was great in explaining exactly what we were looking at and looking for. He said that it was acid reflux and that there were no obstructions anywhere (of course this would all be sent to the doctors in the burn unit to have them decide). The barium was pushed through his feed tube, and it was vomited up the second it touched the stomach. Clay was very upset and was saying over & over "Please don't put anymore of that in my tube." It took 5 of us to calm him down so that the radiologist could follow the barium and take pictures. He also placed Clay's feed tube, past his stomach, into his intestine. This team, at Children's hospital, perform this test on a daily basis; so, they were quick, knowledgeable, and efficient.
Clay was taken to get his bath when we returned to his room. His blood labs showed that he was low on potassium. The night nurse worked all night to get his potassium levels where they needed to be. Hopefully this will help with the vomiting too. His tube feeds were started this afternoon and something was given for his acid reflux this evening. We hope this resolves our vomiting issue. He was restless all evening and I hope he can get some much needed sleep tonight. Hope you all get a good night's sleep as well ~ thanks to all!

Thursday, June 11

2009-06-11T20:09:00.002-05:00

Hello to all! What a stormy night and morning we had here in Dallas. Hope all of you in this area made it through the storms okay. Clay finally had a bowel movement this morning, but he's still vomiting. We had asked about Miralax, but he cannot keep anything down so this was not given. Some have asked if it there could be damage to his vagus nerve and the attending doctor said that there is no damage to this nerve. As a matter of fact, there is (and was) NO internal damage caused from the fire. His potassium numbers were low, so they are giving this through his IV. They are also giving him Reglan and Amitriptyline.
A team from Children's Hospital will come get Clay at 9:15 in the morning. They are going to do a G.I. test. I will follow them over and will be able to be in the room with him. I changed Clay's trach tube ties today after his bath. With a doctor by my side, we take his trach tube out for a few minutes each day. He gets so anxious and stressed when he realizes that his trach tube is out. He cries and motions for us to put it back in and then vomits. We have done this for the past three days, so that I get used to changing it when we are at home. Also, the doctor wants to show Clay that he CAN breathe without it. He can breathe through his mouth and nose if he will stay calm. The attending doctor visited with me about this issue yesterday. Clay has become so accustomed to his trach tube (4 months) and he thinks that he cannot breathe without it. I have come to see and understand that his anxiety is not caused by having the trach tube in. He becomes anxious when his trach tube is taken out or when it is plugged with secretions.
Clay walked with his Physical therapist today and spent about 15 min. in the playroom. He had to have two feed tubes put in this afternoon. The nurse pushed the first one through his nostril and then had to pull it out after the x-ray revealed that it was curled in his stomach. A second one was then put in. Clay has gagged and vomited more frequently since. Also, he began to cough more secretions through his trach tube. He has not had many secretions, so we do not know why this has caused more. I feel for him and wish I could take it away.
We will see what the test shows in the morning. Thanks again for all your help and encouragement.

A verse of one of our hymns has been on my mind the past few days: "He leads us and by faith we follow with hearts united to His will; His heart will plan His hand deliver and show to us He's leading still..."

Wednesday, June 10th

2009-06-10T23:27:00.002-05:00

Hello to all. Short and late post tonight, sorry. Clay had another day of vomiting, as has become the norm. We are receiving a lot of advice and all is appreciated. Know one knows the exact cause of the problem but we will continue to try different treatments. Clay had to have his IV replaced because his was plugged and no longer viable. The nurses missed his vein several times and he was in a great deal of pain. This afternoon the childlife specialist brought a doll of some sort in and gave Clay a needle. She told him it was his turn to give an IV. Mom said he took great pleasure in sticking the doll. I asked him if the doll was crying and he said yes. I am sure that he was happy that someone beside him was getting stuck with a needle. Misery loves company. He was nauseated most of the day and never kept any food down. If we decide to stay where we are they will put the feeding tube back in tomorrow and probably do a die test on him to see if there is anything unusual in his stomach. Mom, Grandma, and Cody had a meeting with Clay tonight. They said he tried to participate. He feels so bad it is hard for him to do much of anything. One hymn that was chosen was # 383 Deidra really enjoyed the portion which says' "He knows our trials and temptations, And bids us seek His face alone For grace to overcome and live a life more worthy of his Well done." Hope all have or had a restful night. Thanks for your thoughts , prayers and concerns.

Tuesday, June 9th

2009-06-09T20:48:00.003-05:00

Hello to all. This is Chance posting from Olney. I bet it's hard to know where we are. We are not sure ourselves sometimes. Grandma, Cody, and Mom are in Dallas tonight. Joy spent the night with Clay and said it was not very restful. He continued to vomit through the night. The resident doctor was making his rounds this morning and he told Joy they were not overly concerned about the vomiting. I bet he would be concerned if it was him who had been sick since last Saturday morning. Deidra met with the social worker and told her we were not comfortable with what we had been shown with the trach. They allowed her to go into the tank and two of the doctors came in and showed her how to pull it out. Clay panicked with out it and would not breath through his mouth or nose. They replaced the trach and he promptly vomited. All and all quite a learning experience for everyone involved. Dee Dee thinks that the anxiety he has about his trach is causing the vomiting. I think the cause has yet to be determined. They tried to entice him to eat all day so he would not have to have the feed tube placed back in. They were not successful. He has still not had a bowel movement and several people suggested we try a product called Miralax. Grandma is going to see if this would be available tonight. We are having a tough time these last few days and we are hopeful that something will resolve the problems for Clay. Good night to all.

Monday, June 8, 2009

2009-06-08T21:20:00.004-05:00

It's Jenae again. DeeDee is in Olney with Carson and Chance is at the hospital with Clay. Grandma is driving back to Dallas from Ingleside with Cody. She is going to relieve Chance. Clay was not discharged from the hospital today as we first thought. He has thrown up so much that an IV has been put in him. They put it in last night. Today the vomiting was not as often, but he still threw up until noon. Clay wanted to take a bath today so they took him to do that, but he was in lots of pain and didn't want to do much after that. He had an X-ray taken yesterday and it shows there is some distension in his intestinal/bowel area. They are trying several things to get the vomiting to stop and we will hope to know more by tomorrow. Thanks for riding this emotional rollercoaster with us. We appreciate all the thoughts and prayers.

Sunday, June 7th

2009-06-07T17:34:00.002-05:00

Hello. This is Chance. Clay had a decent night, the vomiting medication made him sleep. He slept until about 5:30 this morning before he awoke and started where he left off last night. He has not eaten anything since dinner on Friday night. We are trying to keep fluids and some of the kid essential protein down him. He had several episodes before lunch. He was exhausted and slept from 9:30 until 11:00. They came in and did an x-ray to see if anything looked unusual. He went to the tank at noon and set in the playroom for a bit afterwards but he is still not feeling very well. We are going to keep pushing fluids through the night tonight, and see if rest will help put him back on his feet. There are still plans for the discharge tomorrow but, we will have to see what the night and morning hold before the decision is made. We have been so encouraged by his recent progress that these days are hard. Deidra and I would like for him to have good days for the rest of his life. It seems he has had more burdens than some will ever face. We appreciate the thoughts and prayers of everyone and please remember him tonight. Thanks to all. I hope one of us post a good report tomorrow. Good Night.

Picture of the boys

2009-06-06T20:22:00.004-05:00

This is Jenae again. This is a picture of the Fite boys taken in Dec. 2008. From left to right: Clay, Cody and Carson

Saturday, June 6, 2009

2009-06-06T19:10:00.003-05:00

This is Aunt Jenae posting from Argentina..Clay did not have a very good day. DeeDee and Chance had a CPR class all day today. Uncle Justin stayed with Clay for the whole day and Aunt Lorna came to help out for several hours. Chance and DeeDee are thankful for their help. Uncle Justin was able to go to the shower room with Clay and help him get cleaned up. Uncle Justin was just as big of a trooper as Clay was because he was running around gathering towels, wash cloths, etc trying to keep up with the vomiting. It was back and forth to the laundry and making the pile of towels bigger each time! I am sure he thought he was going to have a fun day playing games with Clay and spending most of the day in the playroom :) I know he was glad when Aunt Lorna arrived to help him. The vomiting started around 3 a.m this morning and continued all day. If you remember, his trach had been downsized and it's much smaller than the last one. He was having trouble through the night feeling like his trach was plugged. The night nurse called the Respiratory Therapist from ICU to come suction it out. Thirty minutes after that he started vomiting and has not stopped. He doesn't feel like eating, but they are encouraging him to drink lots of fluids. Just for the record, the fluids come up, too, but he needs to keep trying so he doesn't get dehydrated. He was not able to sleep until just about 7:30 pm this evening after he was given a suppository of Phenegren (sp?). He is completely exhausted and worn out from all of this. He is not running a fever so they don't think it's an infection. DeeDee and Chance are staying with Clay tonight in the room and will watch and see how things progress. If it gets to the point where he needs fluids they will put an IV in him. We hope his little body can get some much needed rest and wait until the morning before any decisions are made. Thanks for all the encouraging posts and thoughts and prayers. Good night and may you all sleep well. Love, the Fites

Friday, June 5

2009-06-05T20:06:00.002-05:00

Hello to all. First of all, we want to thank you again for all your prayers and encouraging words. We would have loved to respond to everyone who posted on Clay's blog (over the past months); but, our days were long and our nights were short. To the ones we have never met, we would love to meet you all someday. To the ones we know, we would love to see you sometime. You all have touched our hearts in so many ways and we are grateful. I hope that you all will get the chance to meet our boys someday.
I see more clearly why God needs us to be childlike. Clay's spirit through this experience has been truly amazing. I learn more from him everyday and am thankful for the spirit of a child.
He had a busy day with his therapists, his bath, and his playtime. :-) Chance and I will be taking a CPR class tomorrow. Uncle Justin will stay with him all day. Grandma and Cody made it to Grandma's house safely and Carson is with some friends in Olney. Clay will just hang out at the hospital over the weekend and be discharged sometime on Monday. We will be here each day, next week, for outpatient therapy. I'm headed back to the hospital to be with Chance & Clay. We will continue to post on Clay's progress.

With heartfelt thanks to all ~ Chance, Deidra, Carson, Cody, and Clay

Thursday, June 4th

2009-06-04T20:46:00.004-05:00

Hello to all. This is Chance posting from Olney. Clay had a busy day. He was fitted for his new pressure mask and received a new smaller trach tube. He was given some medication before being fitted for the mask. It hit him as he was riding his tricycle back to his room and he could not make his legs peddle any further. Deidra went to the tank with him for his bath and she was told it was time for her to learn how to give it. She did and I bet Clay enjoyed having Mom as his bath nurse. The doctors placed some numbing medicine on some granulation tissue around his trach. After it took effect, they coated the tissue with silver nitrate to remove the unwanted skin. The child life specialist visited with Clay for a long time today. She let him look in a mirror for the first time. She and Mom had explained the grafts and when Clay had the first look at his face he really started doing the stretching exercises. That is a pretty brave testimony. Clay went up to the 10th floor to see the helicopter landing pad. His Mom told him they would have to sneak him on the elevator so his nurses wouldn't know he had left the sixth floor. He thought this was a grand game and said, "Hurry Mom" and "Close doors close." He was excited by every meal today and embraced whatever was served. Clay's Aunt and cousin are staying with him tonight. Grandma and Cody are headed to South Texas tomorrow and we will spend the weekend anticipating Clay's discharge. We appreciate all of the kindness that has been shown the Fites and hope that Clay can continue to touch hearts everywhere.

Wednesday, June 3

2009-06-03T22:02:00.003-05:00

Hello to all. It is late and I'll post this quickly. Clay had a busy day playing in the playroom. They did not downsize his trach tube today or cut away the granulation tissue growing over his trach tie. The therapists did not have time to make him a new, left, leg splint. This will all be performed tomorrow. I will also be meeting with the care coordinator, childlife specialist, and social worker in the morning. I was supposed to meet with them today, but it didn't work out. Hopefully we'll get a chance to meet in the morning. They are going to address the fact that people may stare and how to face the public when we leave the hospital. I get too emotional when I think about this & I'll post more tomorrow. Praying always & thanks to all!

Tuesday, June 2nd

2009-06-02T21:04:00.003-05:00

Hello folks. DeeDee is having trouble making a wireless connection at the Ronald McDonald House so this is Dad stepping in from Olney. Clay had another good day. He seems to be on a roll and we are thankful for it. We expected a respiratory team today to downsize the trach. No luck they never arrived. The childlife specialist was available today and she let Cody spend some time with Clay in his room and in the play room. I'm sure the brothers enjoyed each others company. This afternoon Cody and Clay played some ball in the hall of the BACU. Physical therapy brought Clay a tricycle today and he road it up and down the hall and through an obstacle course that they had set up. After riding the trike she made him play a soccer type game where they kicked the ball back and forth. When Alicia the therapist left, Mom helped Clay back in bed and he said, "Whew, That was some serious therapy." He stayed in bed for a full 5 minutes and told his Mom he thought he would go ride that bike some more. Off he went. Dinner tonight was some hospital meatloaf. Clay told his mother that her meatloaf was number 1 but this was a close number 2 and he ate it up. He told his mother he was ready to use the toilet and he got up and went. He was pretty excited because he has not used one in over 100 days. He understands progress. Deidra feels like we are just biding our time. They want us to get the CPR class out of the way and then they should start seeing use on an outpatient basis. We do not know how many days each week will be dedicated to therapy. We appreciate all of the post and encouraging words. We are thankful for Clay's progress and every ones support. Good night.

Monday, June 1

2009-06-01T21:54:00.003-05:00

Hello to all! Wow - June is here! I thought about the words of one of our boy's favorite hymns today: "Time is fleeting, flowers are falling, Life will soon be past; pause and ponder where thou goest: Time is flying fast." Cody and I are at the Ronald McDonald House tonight and Grandma is at the hospital with Clay. We will go to the hospital early in the morning and Cody will come back here with Grandma. Carson is in Olney with Chance because he had some activities this week. Clay had another active day and he is ready to leave the hospital. When I arrived early this morning, he continually asked "Where's my breakfast tray?" "Why is it taking so long?" "Did they forget?" "Mom, where is it?" We were both so excited when it arrived. He loves to lift the lid off his plate to see what he's having for each meal.
Clay will be sent home with his trach tube. We had many mixed emotions about this; but, we are just happy that we get to take him home. We will adjust to life with a trach tube and understand that it is not permanent. Chance and I will be taking a pediatric CPR class. Someone who knows (and works with) pediatric trach tubes will be sent to Clay's room to show us how to change it, clean it, and put it back in (if it comes out). I keep telling myself to not worry, worry, worry. We were told that Clay will have surgeries every month or two. His scars will have to have releases. In order to perform these surgeries, Clay will have to be under anesthesia. The scars have caused his neck to pull down and his mouth doesn't open wide; therefore, it would be extremely difficult to intubate him for surgeries. Having the trach tube leaves an open airway that the anesthesiologist can work with during his surgeries. I'm going to go to bed now that I have probably confused all of you. I'm so tired, I can't think much more. Thanks to all and good night.

Sunday, May 31

2009-05-31T21:16:00.003-05:00

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

2009-05-30T19:58:00.002-05:00

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

2009-05-30T12:45:00.005-05:00

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

2009-05-28T22:06:00.004-05:00

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

2009-05-27T23:00:00.005-05:00

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

2009-05-26T16:40:00.004-05:00

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

2009-05-25T19:01:00.003-05:00

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.

Sunday, May 24, 2009

2009-05-24T20:01:00.002-05:00

It's Aunt Jenae again...down in the southern hemisphere! DeeDee is dictating to me while she is driving back to Olney with Carson and Cody. Chance and Grandma are staying in the room with Clay tonight. We hope Chance gets the opportunity to get some sleep. A gastroenterologist came to see Clay today. He visited with DeeDee and asked her many questions concerning Clay's vomiting. He said it was a lot of information to process and he had to go over all the records and papers then let them know what should be done. We hope that will be soon. He vomitted several times during the night and continued to vomit throughout the day today.

He did not realize that baths/showers were going to be a daily occurence and he wasn't too happy about getting one today. Two techs come daily and take him to another room to bathe him and take care of his wounds. He is rolled back into the room in a wagon...sparkling clean! One of these days Chance and DeeDee will get to go in and watch as they bathe him and learn how to do it. They will be the "techs" when he goes back home :)

Carson and Cody were able to see Clay today. The same rules apply as in the BICU - no one who has had a cold or been sick, only 2 visitors at a time and no children in the room. They pulled him in his wagon to the end of the hall to see them. He was so excited to be able to show them some of the toys that he had access to in the playroom. He would have his mom and dad pull him in the playroom, he'd pick a toy, they would take him back to the end of the hall and he would wave the toy to Carson, Cody and Grandma to show them. It was like a magic show :) Go behind the doors and bring out another surprise!! He then did that several more times and by the 4th or 5th time he was completely worn out and ready for a nap.

Several visitors came today so that made for a good day. Clay slept for several hours during the time visitors were here and during the time relatives came. Chance and DeeDee just want to say thanks to everyone for all they have done. They really appreciate the thoughts and prayers of others.

Saturday, May 23rd

2009-05-23T21:54:00.002-05:00

Hello again - another update coming from Omaha, NE (from Uncle Jace & Aunt Dana). Chance & DeeDee could not get online @ the hospital, so they will give more in-depth info tomorrow.

Clay's first full day in his new room in the Acute Care Unit was a good one. He had a restful night but Chance is a little tired after his first night with Clay because he was up at every noise. Chance has called in help tonight with DeeDee so they both get to spend the night with Clay.

After 99 days, Clay enjoyed his first shower and is loving having his parents with him at all times. Chance seems to believe that Clay enjoys having Mom and Dad as constant servants. Today there was no vomiting....YEAH!! The IV became clogged and it was removed early this morning. Some of the medicines were not administered since no IV and Clay did fine.

OT and PT came by and worked with him today. He walked down the hallway and waved at Aunt Lorna and Randi Brooke. Thanks to all who have shown support and continue to pray. Hope everyone has a good night.

Friday May 22nd

2009-05-22T22:21:00.003-05:00

Hello all. Chance is at the hospital tonight without his laptop, while DeeDee is putting the other two boys to bed at the RMH. So this is Jace and Dana posting on their behalf from Omaha NE.

After 98 days Clay was finally moved out of BICU to a new room. He moved over around noon today. The last three months, Chance and DeeDee's lives have revolved around visiting hours and now they have the opportunity to spend their nights in Clay's room. This will take some adjusting but they are excited to have 24/7 access to Clay. It is a big step in the healing process but Chance and DeeDee are already missing the great care Clay received in the BICU.

The change has been hard on everyone. Clay was looking forward to moving because he would have access to the playroom, video games and more time to play. It has been frustrating for them because they are still unable to control the nausea and vomiting. The doctors have him on three medications to try to help, but it appears they have not been very effective which is disappointing. The doctors, at this time, will keep the current regime for several more days in hopes they can control his nausea in the future. The meds cause Clay to be sick at times and make him very sleepy. Unfortunately, Clay has had little desire to go play in his new environment and spent most of the day sick or sleeping.

Chance and the boys arrived this evening. Chance will be spending the night with Clay. DeeDee, Grandma, Carson and Cody are at the RMH tonight. Thanks again for all of your continued support and prayers.

Thursday, May 21st

2009-05-21T21:20:00.004-05:00

Hello to all. Short post tonight from Olney. Clay was pretty good this morning he played with some toys that O.T. brought in and was proud of his accomplishments. Deidra and Joy came in to one visit and there was an ear, nose, and throat specialist from Children's doing an exam on Clay. They are going to schedule him a trip over to their hospital to do some test trying to pinpoint the cause of the vomiting. We thought this was an example of the BICU being cautious after yesterdays incident, apparently not. At 6:00 tonight Deidra was informed that Clay is scheduled to be moved out of the BICU tomorrow. He will be moved with the trach in place. Mom and Grandma started packing up some of his stuff tonight. He gave them his spiky ball that he sleeps with each night. They told him he could keep it until the move tomorrow. He said no and indicated he wanted it packed up. Grandma told him if he could get a good nights sleep he would be ready for the move tomorrow. He quickly shut his eyes. He is ready to go. Joy and Deidra had another surprise today. Kermit went home to Austin with his grandmother. He came by Clay's room to say goodbye and just missed Joy and Deidra. The nurse told Deidra and she ran down the stairs to say goodbye. She shed several tears with Kermit and his Grandmother but they were tears of joy. We wish Kermit a quick recovery and hope he enjoys being home with his loved ones. Deidra and Joy are back at the Ronald McDonald House getting clothes washed and some things together, because Deidra will get to stay the night with Clay once he is moved out of ICU. Tomorrow will be a milestone for Clay. I am sure God knows what is best for him and he will continue to improve in his care. Thanks to everyone for your post and concerns we appreciate all.

Wednesday, May 20, 2009

2009-05-20T20:34:00.007-05:00

This is Jenae writing the blog tonight. Well, we thought today was going to be a good day.....we were wrong!! It has been an emotionally draining day. First, Cody was sick and Chance had to have a friend come and get him to babysit him. He had a bad earache and it was all the way down into the ear canal. They caught it early so that's good! That explains his crying all through the night. As for Clay....there was going to be a huge step taken today and that was to take the trach out. When DeeDee and Grandma (our mom) went in to the 5:00 visit the nurses said they had a surprise. When DeeDee walked into the room Clay said, "Hi, Mom!". Those were some of the sweetest words to hear. The trach had been taken out and DeeDee and Grandma (our mom) got to visit with Clay. He was watching cartoons, was telling them about the cartoons and other things. A few complete sentences were said anyway. All the nurses had been in the room to hear Clay's voice. They all loved to hear it! Halfway through the visit (about 30 minutes into the visit) he started vomiting. He could not get his air, turned blue and still. Grandma (our mom) was holding his head. The nurse ran to get the respiratory therapist & DeeDee was running to get help. Help arrived immediately. They had to do an emergency trach (in the same spot they had taken it out at) and bag him to breath for him. There were 7 or 8 people around the bed. They had to pump the air in him. He is not on a machine, but he has another trach. When they went back for the last visit he was itching all over and was miserable. The nurse was giving him Benadryl and he was shaking his head no. He thought it might make him sick. He had it anyway because the straight cast on his left leg is making him itch. The nurses said they would keep a close watch over him tonight and we know that God will keep him. DeeDee just wants all to know that she is in no condition to write the blog tonight. One of the most difficult things to see is when your child stops breathing. Breath is life and we are thankful that we are still in the BICU at a time like this. Thanks a million to all the nurses, respiratory therapists and doctors that have helped us tonight. There is no way to thank you enough.

Tuesday, May 19

2009-05-19T21:36:00.003-05:00

Hello to all. We hope you all had a wonderful day. When we walked through the doors of the BICU, this morning, our night nurse (Alan) told us that he had some bad news. Before we had time to process these words, he told us the news. He and Clay played a card game during the night. He said "Clay lost the bet and owes me $40.00, so......pay up!" We laughed and said, "What card game did you play?" His reply was, "Old Maid". We are truly going to miss all of the BICU nurses and staff.
Dr. Arnoldo informed us of his plans for Clay. Clay will not have anymore major surgeries in the BICU. The doctors have decided to wait on doing another surgery on his left hand. Two or three months down the road, another surgery will have to be performed. His trach will be removed soon and then he will be moved out of ICU - such great news and progress! Once he is moved out of ICU, his occupational and physical therapy will be a major part of his recovery.
Clay sat in his wagon and chair for a short time today. He counted some airplanes and asked for grapes. We made sure that we had some grapes for our next visit. He ate one grape (piece by piece) and savored each tiny bite. We were informed that his grape came back up after we walked out. We also read a lot of books this afternoon. His "green" cast, that P.T. put on yesterday, was cut off so that his donor sites could be examined. A new green cast was put back on this afternoon. Kermit told P.T. that he wanted to go see Clay. He walked all the way from his new room to the BICU. What a special, sweet friendship.
Clay was sound asleep during our last visit. Hugs and special thanks to all!

Monday, May 18

2009-05-18T21:03:00.002-05:00

Greetings ~ we hope you all had a good day. I talked to Carson and Cody earlier and they had a good day at school. Cody's class took a field trip and he was telling me all about it. Carson told me about all of his end-of-school activities planned. School will be out before long. Clay had a busy day, too, in ICU. His night nurse (Jason) said that he had an "awesome" night. He had 4-5 bouts of emesis (vomiting); other than that, it was a good night. He played with his soft spike (Koosh) ball, laughed, and got a little sleep. His nurse told us that it was good to see Clay's 5-yr. old spirit showing. When we arrived for the next visit (8:00am) Clay's day nurse had him in his wagon. We pulled him to the window and counted airplanes with him. He was coughing up a lot of secretions, at this time, and wanted to return to his room. He likes to be close to his suction tube when he feels sick at his stomach.
He had quite a bit of pain medication today. He has scar tissue behind his left knee which causes him to want to draw his knee up. His P.T. placed a green cast on his left leg. His O.T. placed another cast on his right hand. His nurse taped a suction tube to his cast so that he could suction his saliva when he wanted to. He cried and reached for me when we had to leave at the end of our visits. I cried too and his nurse told me that this is part of the healing process for him. At our last visit of the day, I held a cool washcloth on his forehead until he closed his eyes. Then I slipped out quietly. He did not sleep much today, so I hope he will tonight. Good night and special thanks to all!

Sunday, May 17

2009-05-17T20:59:00.004-05:00

Hello to all! Chance and the boys are headed back home this evening. It was so nice to spend the weekend together. It's hard to believe that this school year is almost over.
Clay had a busy day. The dressing covering the back of his head has come down, and the grafts have adhered nicely. They also took some x-rays of his left hand and the doctors will make a decision this week about the surgery. When we arrived for our 11:00am visit, after our Sunday morning fellowship meeting, Clay was in his wagon. Carson, Cody, and Grandma were outside the ICU doors. His brothers put on their gowns, masks, and caps and were able to visit him outside his room. We pulled his wagon to the end of the hall and his brothers sat beside him for a little while. It was touching to have the boys together again and share this precious time with each other (many feelings in our hearts). Clay was able to say their names when we placed our finger over his trach.
Clay's nurse took him (in his wagon) to the break room and let him pick a drink out of the fridge. She said that his face lit up when he spied some chocolate milk. She let him hold it and sip it while cruising around in his wagon. He was anxious to show us what he was drinking when we arrived. A gentleman from Corinth, TX builds custom-made toy barns. He made one for Clay a few weeks ago and we were not able to put it in his ICU room. We have it at home and Clay's brothers have enjoyed playing with it. Clay will enjoy it too, as soon as he makes it home. A barn was also made for Kermit. We pick it up today and took it to Kermit's nurse. She set it up on a table by Kermit's bed while he was asleep. When he woke up he yelled "Nurse, Nurse look at this!" We thought this was a pretty cute incident to tell about. Kermit's ICU room was empty this evening because he was able to move out of the ICU today. Clay is going to miss his little buddy, but will get to see him again when he is moved from ICU. Hopefully Clay will get to move soon.
Some friends brought Clay a battery-controlled jeep to drive around, when he's feeling good. He was allowed to circle the ICU a few times in it and wanted to park it in his room. This is against regulations, so Chance & I carted this thing all the way back to the parking garage. We were really getting some curious looks from bystanders. We had several visitors today, and it was good to see all. Clay did not sleep much today; so, maybe he will sleep soundly tonight. He is coughing up some thick secretions; but, he only had one episode of emesis (vomiting) today. He's getting better each day. Hope you all have a good night & thanks again.

Saturday, May 16th

2009-05-16T20:50:00.002-05:00

Hello to all. This is Chance. Clay worked hard today and spent the majority of his time awake. Stephanie was his nurse and they had a good day. He was awake at 6:00 this morning and when I walked in he held both of his arms up and gave me a big hug. I can't think of a better way to start a Saturday. When I came back at 8:00 he was already in his wagon and sitting down by the window. I was surprised to see him out of bed so early. Stephanie said that apparently he was not going to stay in bed today because he was trying to get up with or without her.
Physical therapy was in right after 8:00 and they came down to walk Clay. His left leg has some open wounds from the donor sites and there is quite a bit of scar tissue behind his knee and on his hip. It is very painful. He had to have a morphine bolus before therapy could unwrap and place the leg wraps on it. When the time came to walk it was very difficult, he would have hopped on his right leg all the way if it would have supported him. This was hard as a parent to watch, but I am thankful he did not stop. The therapist said he is much tougher than most of her adult patients. We had a good visit at 11:00 he was pretty thirsty. At 2:00 he was back in bed and supposed to be napping. He was not sleepy yet and was awake the entire visit. At 5:00 he was back near the window in a recliner and he was sound asleep. He went down to color a picture and a few minutes into the project he was out like a light. He woke up before the visit was over and Deidra and I helped put him back into bed. He was awake at the last visit and we hope he will get a good nights rest starting shortly after we left. He can enjoy a Sunday of freedom because we have been told on Monday they are going to place a cast on his right hand to bend it into a fist and on his left leg to straighten it out. We hope everyone has a good Sunday. We are comforted each day knowing he is in so many prayers, and that God is his constant companion. Good Night

Friday, May 15

2009-05-15T21:19:00.002-05:00

Hope everyone had a great day. Clay had a busy day. He sat by the window (in his wagon) and watched for airplanes this morning. He was nauseated some today but only vomited once. His stomach was hurting during our 2:00pm visit. He wanted a cool washcloth on his head, stomach, and knee. I placed a cool, folded washcloth on his forehead. He reached up and pulled the washcloth over his eyes, nose, and mouth. I immediately pulled it up off of his mouth and nose, thinking that he would not be able to breath, and he immediately pulled it back down. Then I realized that he breathes through his trach tube and the cool washcloth was not hindering his breathing. His nurse was showing us some pictures from one of her trips during this time. Every once in awhile, Clay would lift the corner of the washcloth and take a peek. :-)
The child life specialist brought over a battery controlled jeep for Clay and Kermit to drive after they walked with the Physical Therapist. Neither of the boys felt like walking so P.T. figured that the jeep would be a good incentive. Kermit drove it first, after he walked. Then he didn't want to get out of it, so he drove it down to Clay's room and scooted over so Clay could drive it. Clay had to walk down to the window and back and then he got in with Kermit. They drove around the BICU and then out the automatic door into the hall. This trip wore them out for the day. Hope you have a good weekend! Thanks and good night!

Thursday, May 14

2009-05-14T21:51:00.002-05:00

Hi to all! I apologize for posting this so late. We say our prayers and get ready for bed before we type on the blog. This is why it is late at times. Clay was awake when we arrived for the first visit this morning. Jason (his night nurse) told us that Clay woke up at 1:00am and played with a flashlight and his soft spike ball. He was sick at his stomach twice last night and again during our first visit. His secretions are thicker today and it is harder to cough them up. I think that Clay gets nauseated from the anesthesia, too. He did not feel like doing much today, and was still recovering from surgery and the effects thereof. During our 11:00am visit, Clay and Kermit were propped in their wagons. They were taking turns playing a game with a joy stick. Clay did not have the energy to play very long. He slept for most of the afternoon. We are thankful for healing. Special thanks to all!

Wednesday, May 13; Surgery XIII

2009-05-13T22:13:00.004-05:00

Hello to all! Clay went to the O.R. at 10:00am. He slept through the night and did not wake up until it was time to go to the O.R. The doctor said that Clay's surgery went well. He was coming off of the anesthesia when they brought him up from the O.R. He was in pain; so, a doctor was giving him pain medication as they were rolling him down the hallways. Upon arriving to his room, his nurse sedated him. He was awake, but groggy, during our 5:00pm visit. He was allowed to have a little drink of apple juice and we had no vomiting today. Yeah!
Clay is a participant in a research study. We were asked to take part in this research study and signed the consent forms this morning. This study is being done to determine if use of the new burn wound dressing heals skin graft donor sites as well as current treatment. Patients have reported that this new dressing is less painful on donor sites. Skin was taken from Clay's calves to graft the back of his head. Two different dressings were placed on the donor sites. The current wound dressing has healed all of Clay's previous donor sites really well. If this new dressing is less painful, with better results, we were willing to give it a try.
Have a good night and thanks to all!

Tuesday, May 12th

2009-05-12T21:02:00.002-05:00

Good evening. This is Chance here for tomorrow's surgery. Clay can chalk up another day in the BICU. He was asleep this morning at 6:00. He was still in bed at 8:00. Debbie was his nurse and she fixed an additional suction tube up so Clay could use it anytime he needed. There were several doctors that came in at the end of this visit. Clay was a little overwhelmed by all of the strange faces, and was upset when Mom and Grandma had to step out. At the 11:00 visit occupational therapy played several games with him. He likes to play but quickly wears down. After lunch Mom was able to pull Clay around in his wagon. He seems to enjoy seeing new sites. He was resting at the 5:00 visit and was still asleep in the wagon when we went in to visit at 7:30. Deidra and I asked the night nurse if we could help her put him in his bed. She seemed to welcome our help and we quickly had him situated and ready for a good nights rest. Clay was still having issues keeping his tube feeds down and he did not feel good all day. We are praying for a restful night for him and a successful surgery tomorrow. He is the second procedure on the schedule and will probably go to the O.R. around 10:00 a.m. Please keep him in your prayers. Good night

Monday, May 11

2009-05-11T20:38:00.003-05:00

Hello to all. We hope you all had a good day! The homografts on the back of Clay's head have adhered well. We were told today that Clay will go back to the O.R. on Wednesday morning. They will take off the homografts and place autografts (his own skin) in their place. He will have a longer period of healing after this surgery. He will have donor sites that will need to heal as well as the back of his head. If these grafts adhere, this will be the last of his surgeries for awhile. We were told that he will need to have more surgeries on his left hand. The doctors will discuss this at a later date.
Clay's Occupational therapist made another new cast for his right hand today. A new cast is made each week. He is not able to make a fist with his fingers; therefore, the casts help to bend his fingers down. When we arrived for the 11:00am visit, Clay and his nurse were hiding behind the nurse's station. He was in his wagon (propped up with many pillows). They came around the corner and scared me - Clay thought this was so fun! Then, Bonnie (his nurse) pushed his wagon while he steered. They circled the ICU about three times. Bonnie asked Clay if he wanted to go fast and he nodded his head. We were allowed to circle the ICU with them and helped him steer. He waved to Kermit as he passed his room. His Occupational therapist set up a new game in his room and he was so excited.
At our 2:00pm visit, Clay walked around the ICU at a fast pace. His Physical therapist told him that she could hardly keep up. He was placed back in his wagon, and his nurse took him to the playroom. He was playing a board game with her and got tired in the middle of the game. He then wanted to go back to his room. All this play time makes a little guy tired! During our 5:00pm visit, Bonnie and Arnie were busy making both Clay and Kermit a guitar. They made the guitars using boxes, elastic, and tape. Bonnie had a busy day with Clay and will sleep well tonight. :-) Clay was asleep during our last visit, and we hope he sleeps well too. We hope you all get a good night's sleep as well. Thanks so much!

Sunday, May 10

2009-05-10T21:15:00.002-05:00

Happy Mother's Day to all you special mothers! I had a special Mother's Day because I was able to be with all three boys today. I got to be with Clay during our visits and with Carson and Cody at the Ronald McDonald House. Carson and Cody were anxious to give me their sweet Mother's Day cards that they made at school. Chance went to see Clay at 6:00am while Carson, Cody, Grandma, and I slept a little longer. Chance had Clay sign a Mother's Day card and told him to hide it under a pillow until the next visit. When we arrived for the 8:00am visit, we stopped to talk to the nurses outside of Clay's room. Clay saw us and began to wave the Mother's Day card in the air. It was so sweet. He had been waiting for an hour to give me the card.
He had a restful Sunday. We went to our Sunday church meeting, and when we arrived at the 11:00 visit, he was sitting in his chair. He sat his chair for a few hours and then was moved back to his comfortable air bed. He took a few sips of apple juice this afternoon. He was rubbing his stomach and indicated that it hurt. Although, he did not vomit today. We are thankful that his little stomach is, at least, getting relief from the vomiting. He was sleeping during our last visit of the day. I hope he has a restful night.
Through this blog, we feel like you have all been with us. Thank you for your prayers, thoughts, and words of encouragement through this unimaginable experience. Carolyn stated in her post how she feels that God has brought us all together through Clay. This has been our thought too. Many tears have been shed: tears of worry, tears of heartaches, tears of thankfulness, tears of joy, tears of weariness, tears of encouragement - we know that God feels it too and are thankful each day for His continued comfort.

Saturday May 9th

2009-05-09T21:26:00.002-05:00

Hey everyone this is Dana, DeeDee's sister, typing from Omaha. The Internet is down @ the Ronald McDonald House, so Chance & DeeDee are not able to get online.
Clay didn't have a very restful day. Chance went to the first visit this morning & Clay had been vomiting through the night & again when Chance got there. They did the dressing change a little earlier than usual to get Clay cleaned up. The nurse sat him in his chair today but he didn't feel good & wanted back in bed. They changed his feeding tube to a more concentrated formula to help control his sodium level.
Clay & Kermit received a nice surprise today from a generous group of people in Graham - they each got their own Nintendo DS!! This was a bit confusing for Mom and Dad to setup so they made a special trip back to the Ronald McDonald House. There, they had to rely on their 10 yr old Mr. Carson Fite to get the sophisticated game setup;) Clay says thanks Carson. Clay and Kermit didn't feel like getting out of bed but were both very happy to play their games - it was good therapy for Clay's hand. He wanted his feet tickled during the last visit & was sad when his parents had to leave.
Chance & DeeDee want to send their thanks to all!! Hopefully Clay has a restful night tonight.

Friday, May 8; Surgery XII

2009-05-08T18:54:00.004-05:00

Good evening to everyone! I (DeeDee) am going to post the blog before our last visit this evening while I can use the RMH computer. For some reason, I was not able to connect to the Internet on my computer last night, and it was too late to use this RMH computer. It was a pretty quiet day in BICU today because Clay & Kermit had surgeries. When I arrived at 6:00am, Clay's nurse told me that they had already called from O.R. to prep Clay for surgery. Clay ended up being the first case to go to O.R. instead of second case. He was taken to O.R. at 7:15am. Chance arrived shortly after and was able to see Clay when he came back from O.R. Clay did not have to be placed on the respirator after surgery, and was awake when we entered his room. We had some friends visit, before lunch, and Clay was able to look at the books they brought & interact some. He has a thick dressing covering the back of his head, so he did not move much today. We know how important rest is when we are recovering. His occupational and physical therapists did not come today because of the surgery. During one visit, my mom and I were hot so we were looking for Clay's little fan. We were busy looking for it all around the room. We sat down beside Clay's bed with no luck in finding the fan. Clay pulled his little hand out from under his covers with the fan in his hand and a smile on his face. :-)
He is still sick at his stomach. He vomited 4 times throughout the night and several times today. The doctors have changed some of his medicines to see if this helps. We are on our way back to the hospital to give him a goodnight kiss. We hope you all know how much you are appreciated!

Thursday, May 7

2009-05-07T22:14:00.003-05:00

Hi, everyone. This is Julie. Dee Dee is having computer problems, and the computer room at the Ronald McDonald house was already locked, so she asked me to post tonight. Clay had a pretty good day. The speech therapist, OT, and PT all worked with him today. He walked ALL the way around the ICU today!!! This is a REALLY big circle, and is the farthest he has walked so far! He tried to go fast to get it over with quickly. Upon returning to his room, the nurse jokingly said, "Ok, Clay, hop back in bed". And guess what? He did! He hiked his knee up and pulled himself up on the bed. The nurse and PT were amazed! The PT helped him reposition in the bed. After all this activity, he slept most of the afternoon. He didn't have any Hydrocodone today, but still vomited twice. He wasn't interested in eating today. He even turned down chocolate ice cream. Dee Dee asked him if it hurts when he swallows, and he nodded yes. He was awake and sitting in his chair at the 2:00 visit, and he and Dee Dee played with silly putty and balls. He was very excited about the silly putty because they don't usually get to play with it at home! Clay is scheduled to have surgery on the back of his head tomorrow. His is supposed to be the second case in the morning. At the last visit tonight, he was awake and sad and didn't want them to leave. Dee Dee asked me to again thank everyone for their support, love, and especially prayers. Good night and God bless!

Wednesday, May 6

2009-05-06T21:36:00.004-05:00

Hello to all. We were told that Clay will have his next surgery Friday morning. Dr. Arnoldo will place homografts on the back of Clay's head. In a week or two, they will take him back to O.R. to remove these grafts and place autografts (his own skin) in their place. We have been worried about the back of his head and are relieved that it will finally be covered and begin to heal.
Clay had a busy morning and a restful afternoon. Clay was sick to his stomach three times today. His nurse noticed a correlation between his vomiting and his pain medicine. Each time he was given hydrocodone, for pain, he vomited within minutes after it was put down his feeding tube. He is still receiving a small amount of morphine through his IV. Extra pain medication is given before wound care, etc. Kristen, our O.T., made Clay another cast for his right hand. Uncle Justin (my brother) came to visit Clay at 11:00am. This was Clay's busiest hour of the day. The speech therapist came to work with Clay. She would place a cap over Clay's trach and ask him to say a word. It will take some time for him to get used to having air pushed over his vocal cords again. He gets really anxious each time the cap is placed over his trach. He then was taken to the big window where he watches for those airplanes taking off at Love Field. He also wanted to show us a new trick. While lying in bed, he can pick up his soft, spike ball with his little toes. We were laughing and he was smiling - it was really cute. He was asleep during our afternoon visits and wide awake during our evening visit. We hope you all have/had a restful night ~ thanks to all of you!

Tuesday, May 5

2009-05-05T21:32:00.005-05:00

Hello to all. I think Chance and Arnie wore Clay out yesterday because he slept a lot today. :-) His little body has been working so hard, so I like to see him resting peacefully. He was awake during our 11:00am visit and got to go to the playroom. The occupational therapist was waiting for us when we arrived, and she had the Wii set up for him. She placed the remote in his hand and showed him the correct buttons to push. He played a boxing game which required him to move his right arm back and forth really fast. All this exertion made him tired and he fell asleep right there in his chair, so we took him back to his room. The physical therapist walked him before our 2:00 visit. She said that Clay did not want to walk, but did it anyway. He walked down the hall faster than usual and wanted back in his bed. He was asleep during our 2:00 and 5:00 visit. Some friends brought dinner to us this evening, and they also brought a big soft bear for Clay. He was awake during our last visit and wanted this new bear on his bed. Before we left, he patted his stomach and motioned for us to place the bear on his stomach. The bear was almost as big as Clay and he was smiling as we left the room. I just want to pick Clay up and give him hugs and kisses. When I have to leave the other boys, I can't get enough hugs and kisses. I'm so thankful for the comfort we have in God. We're thankful for your prayers and for Clay's progress.

Monday, May 4th

2009-05-04T18:35:00.002-05:00

Early post tonight. Clay had a busy and good day. He is starting to sleep all night and likes to sleep late in the mornings. Occupational therapy was ready to go to work at 8:00 and Clay was not fully awake yet. I helped wake him up. He sat on the edge of the bed for a bit and then played with monkeys in a barrel. When this was over he was awake and ready for more. He did several more exercises but my favorite was when he had to move his arms like a chicken. He gave it a good try and I clapped. The O.T. did work with the left hand and I received my first good look. Not pretty but hopefully functional. She had the rehab doctor come and visit with me about the options for this hand. Speech therapy showed up next and Clay really took this opportunity to show off. I always knew that talking was his strong suite. They capped his trach and he said several words and counted to 10 twice. The most exciting part was when he asked to have the cap placed back on and told me, "I want macaroni." Needless to say I went all over the hospital to find him some. After speech left he was ready for another trip to the play room, but we told him he would have to wait until he had walked. He was not very excited by this prospect, but walked to the window and then back past his room and down to Kermit's. As soon as he returned to his room and set down in his chair he forced air over his trach and said playroom. Off we went. After all the activities he was ready for his bed. Arne and I settled him in and he found some good cartoons. At the last visit he had a dinner tray. He was willing to try everything but nothing taste good yet. I am headed back for the 7:30 to say good night and Deidra and Grandma are headed this way to take over here. Carson , Cody and I will try to hold down the fort in Olney until we can return this weekend. Thanks to all and good night.

Sunday, May 3rd

2009-05-03T21:08:00.002-05:00

Hello to everyone. Clay had a good day. He is much more alert and sometimes becomes frustrated when we cannot understand what he needs or wants. He slept late this morning. When Deidra and I returned from meeting he was in his chair and preparing to take a trip to the play room in the Acute Care Burn Unit. Arne had him ready to make the trip so we all went over together. He had a nice time but he was extremely disappointed that they did not have the Wi hooked up on Sunday. We were amazed that he remembered this because it had only been mentioned to him a couple of times. He was very clear in mouthing the word Wi to his mother and I. Upon returning to the BICU he went down and counted a few airplanes. As we prepared to leave one of the nurses went to the freezer and pulled out a box of Popsicles. Clay picked strawberry and we were told he ate the entire thing. Thanks to Arne and Bonnie. His nurse has an I phone with several kids games loaded on it. Clay played with it non stop until Arne finally had to go to work and do his nursing duties. We see improvements each day and we are thankful. Deidra, Grandma, and the boys went to Olney tonight. This will be only be the third time Mom has been home since the accident. Please continue to pray for Clays recovery. Thanks to everyone for all the gracious help.

Saturday, May 2nd

2009-05-02T23:09:00.002-05:00

Hello to all. Sorry for the late post tonight. Clay had a pretty good day. He played several games with his occupational therapist. He has a new set of magnets that he really enjoys. He and I had a couple of serious fights with his toy dinosaurs. His always seemed to win. Mandy his physical therapist rotated out of the burn unit today. She had helped Clay through several steps and will be missed. She walked him to the window and back for the last time. Clay was told if he walked to the window he could come back to his room and sit down. He went straight to the window and skipped his usual rest and turned and raced back to his room as fast as his weak little legs would carry him. He knows the faster he gets it over with the less pain he has to endure. Deidra visited with the O.T. who told us that they had taken more of the fingers than we had thought. This was disappointing, but he will overcome the loss. Today was the 100 year centennial celebration for our home town of Olney. A coworker of mine had a muzzle loading rifle that was made several years ago by the Olney gun works. She donated the gun to a raffle for Clay. I purchased several tickets and put them in Carson, Cody, and Clay's name. I took a phone call as we were going in to see Clay at 5:00. The ladies that worked on the drawing wanted to let me know that Clay was the winner. When we went in and explained it to him he attempted to grin from ear to ear. His mouth is very tight and his smile are precious. Thank you to everyone in Olney and elsewhere that have helped the Fites and Clay. Please know we will be eternally grateful. I would like to wish everyone a pleasant and relaxing Sunday. Good night.

Friday, May 1st

2009-05-01T20:57:00.002-05:00

Hello to everyone this evening. Tonight is a joint effort between Deidra and myself (Chance). The boys and I traveled back to our second home and arrived around 8:00 tonight. I have not become accustomed to Dallas traffic. Clay has a new cast on his left knee to keep it straight. He has a burn scar high on his left leg and the most comfortable position for him is to bend his leg up. DeeDee makes sure that he has his orange soft spike ball near his feet for comfort and self tickles. He sat near the window today and counted airplanes in and out of Love Field. Bonnie was his nurse. They brought his lunch tray while he was at the window. He elected to dine outside his room. Mom and Grandma watched as Bonnie helped him sample everything on his tray. He was not interested in any pureed food item until she got to the ice cream. This brightened him up a bit and he indicated he would like some more of it. Sounds like his brothers.
Several speech therapist came in today and Clay had some anxious moments when they covered his trach. He did not feel like he could breathe easily. It was a panic for a little bit, but they talked him through it. It feels different for him since he has not had to force air over his vocal chords for so long. When they cap the trach, he has to get used to breathing through his mouth and nose again. They did not leave the cap on today. They will come next week and place a cap, with a valve on it, over his trach. This will allow him to breathe air in through his trach tube, but force the air out through his mouth. It will take some time for him to get used to it. He was able to say "dad", "mom", "ahhhhh", and "bye". Some of the other nurses came in to hear him talk and clap for him. During the 5:00 visit, Bonnie was going to take him to the play room. He was sitting in his chair and pointed to the bed. He wanted to get in his bed instead of going to the play room. He had a busy day and wanted to sleep. At the last visit he realized it was dark outside and he did not want Mom and Grandma to leave. DeeDee went back in and gave him a hug. I think there were tears being shed by both Clay and Mom. All and all Clay had a busy day with the speech milestone being one we hope he can build upon in coming days. We pray each evening that the Lord will continue to strengthen Clay and comfort him when we are not in the room. Sweet dreams to all.

Thursday, April 30

2009-04-30T18:55:00.002-05:00

Hello to all! I'm posting the blog early this evening (don't be too surprised). :-) My body is telling me to go to bed early. It has been a quiet day in the BICU. The occupational therapist stretched Clay's fingers and played a few games with him. The physical therapist stood him to his feet during our 2:00 visit. He has open wounds on his lower back, behind his shoulders, on his elbow, and behind his knee; so, he doesn't like to be moved or touched. His donor sites are still really painful, he's coughing up a lot of secretions, and he's worn out. Needless to say, he did not feel like standing to his feet for therapy. He was crying, but was so brave and stood for a few moments. He is almost totally weaned off of his morphine and amnesia medication. He only gets more pain medicine as needed. We had some of our ministers and some friends visit today, and it was nice to see them all. We are going to head back for our last visit of the day (7:30-8:00). We hope he has a restful night. We are thankful for rest ourselves both spiritually and naturally. Hope you all have a restful night too. Thanks and hugs to all!

Wednesday, April 29; Surgery XI

2009-04-29T21:33:00.005-05:00

Hello to all! Chance went back home this afternoon. We have not seen the surgery chart so we do not know the specifics of the surgery. Our understanding is that most of the pinkie finger was removed and small portions of all the others. The dressing around his hand looks like a boxing glove and I told him that it was pretty neat to have a "boxing glove" bandage. This dressing will be taken off in a few days. He was really groggy when we were able to see him after surgery. When he woke up, he motioned that he hurt around his donor sites. Skin was taken from his right side and his shoulder to graft the hand. We were told that his donor sites probably hurt worse than his hand because they are superficial. He is feeling more pain after this surgery compared to the previous ones because they have gradually decreased his morphine. They are thinking about possibly moving him out of ICU next week.? We were worried about moving him since the back of his head still needs to be grafted. The majority of his "open" wounds have been grafted (a few little spots + the back of the head remain "open"). Surgeries are still performed when they are moved to the Acute Burn area. This is great progress! Although, change can be a little scary. Dr. Arnoldo will be back on for the month of May. He and his team will assess and make the final decisions as to when Clay needs to be moved. Clay also had a smaller trach tube and a new feeding tube put in while he was in the O.R. Once his vomiting is resolved, the speech therapist will be able to cap his trach so he can talk to us. He did get to have some apple juice this afternoon, but it made him sick to his stomach again. I hope we can get this resolved soon, because it is so uncomfortable for him.
Thank you for all your encouraging posts, texts, and letters. Above all, thank you for your prayers. We had a bible study with Clay this evening and then we asked him if he wanted us to sing him a song. He held up 3 fingers so we sang hymn #3 in our hymn book - "Tell me again of God's wonderful love...".

Tuesday, April 28th

2009-04-28T20:35:00.002-05:00

Hello to all. This is Chance. Here tonight for tomorrow's surgery. Clay had a pretty busy day. I think he had an opportunity to see every type therapist they have at Parkland. He seems to be stable and appears stronger each day. Dr. Purdue prepared us for the worst tomorrow. He seems to think they will have to remove a large portion of all fingers. We appreciate all of the prayers for Clay's hand. We will pray tonight and know that his hand will be in God's during surgery in the morning. Clay is scheduled for the first case in the O.R. tomorrow. We would like to wish everyone a good night and hope everyone has a good day. Thanks to everyone for the kindness shown our family.