Friday, May 1, 2009

Friday, May 1st

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.

16 comments:

  1. What a wonderful day to hear the words "mom" and "dad"! A momentous occasion, one I know you have longed for for a long time! We pray for many more days like today and sweet dreams of those each night! Keep up the awesome work, Clay! We hope to meet you all someday face to face. But for now it is just heart to heart.
    Love,
    The Vallerys
    (Louisiana)

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  2. I guess that is one great thing about these days, you get to experience many precious "firsts" all over again! I have been praying for those donor spots a lot as I know they are so very sensitive, I do hope he had less pain today! Sounds like our Clay is going to be singing those hymns soon! I know that will be a day everyone will be looking forward to! I do pray that in those times during the night when he is missing you, that is when Jesus becomes more real to him than ever before! Rest well! Love, Missy and family

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  3. I'm glad he is doing good. I hope that when he goes into the stepdown unit from I.C.U. that you all don't have to leave him at night anymore. Maybe they will let you all stay with him all day long too since he is so young. Those hugs are powerful medicine. I imagine that they are doing just as much healing as all the other stuff. God Bless.

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  4. So good to read your update tonight and the news of more great progress - the speech being a big milestone! I have thought about Clay all day today and what a trooper he has been through this whole process. It would be hard to face as an adult - let alone as a child. It must mean the world to him to have you near and being such amazing cheerleaders through his recovery!!! Thinking about each and every one of you - our prayers and hearts are with you each day. with care, Monique

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  5. Great to read of the additional first Clay demonstrated today. Way to go! Clay!!! Hope you all have a wonderful weekend together. Thoughts and prayers as usual are headed your way.

    Sleep Tight!

    The Snyder's

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  6. oh so often my eyes fill with tears as I read your posts........and read about your ups and downs, your own tears and smiles..........and little Clay's. I know the presence of God means more to you than every before. and we are assured of His love and the love of Jesus for little children. It touched me deeply that Clay would ask for hymn 3 to be sung. It speaks loudly of what is in his little heart. You all are loved so much. Linda Block, Susie's Mom in Alaska

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  7. So good to hear of improvements! I know it would be so hard to leave Clay at the end of each day. Our thoughts and prayers are with you.
    The Starks

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  8. How hard to leave a little boy....and even harder when he has tears. :( Glad for the improvements this week...our hearts continue to be with you. We hope the weekend is good for all of you!! With Care....

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  9. Everyone else's comments echo our own feelings. Cheering at another mark of progress, our hearts aching to think of you having to leave him at night and even between visits in the day. Especially when he is making it known he doesn't want you to leave - poor guy. He is certainly earning the puppy he's going to get...he's being such a trooper through all of this! Hymn #3 means more to us than ever now....we keep thinking of you all so much. Love, Morgan, Michelle, Shane, Ivey, and Sadie

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  10. Thinking of hymn 270 "Tomorrow's Path" 4th vs. When o'er our head the sky may clouded be, just hear the Father say, "This too shall pass- it bears the promise of a brighter clearer day."
    love the chorus too.

    with sincere and heartfelt prayers

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  11. What wonderful milestones to have reached! It must have been pure heaven to hear him say "Dad" and "Mom" again! One day soon he'll be sharing with you all the things he's been wanting to say all this time. Won't that be fun?! We are praying for you and know the Father has Clay in the palm of His mighty, healing hand.

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  12. I always appreciate your updates, as I never realized there was so much involved in a burn patient. No Idea whatsoever about all the tubes, machines, hoses, different therapist, Dr.s, etc. Hope all of you have a very nice week end. B&E

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  13. Oh, I can't imagine what it is like for you to have to leave him at that last visit!!! I know that he is in good hands there and he is making so much progress, but my heart grieves for you! Thanks so much for giving us such detailed updates EVERY day. It helps to know how we can specifically pray for this precious little boy that we have fallen in love with that we have never met! Press forward and rely on the Lord.

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  14. What a milestone Clay has reached. How happy you all must be to hear that little voice again. We continue to pray for all of you each and every day. The Passy Muir Valve that the therapists will place on Clay's trach will enable him to talk more easily and I'm sure he can't wait to talk, as those of us who know him, know that he likes to talk. What a joy it is for him to be able to know that he is progressing. We know he is doing well and he is a "FITER". We look forward to the day that he can come home and join the rest of his friends in school. Everyone misses him dearly and we think of you all often. Thanks for all the updates, I'm sure they are a great outlet for you as well as info to all of us. May God be with you all over this next journey.
    Steve, Paige and Emma

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  15. it makes me sad to know that sweet little fella is scared and sad about Mom leaving him....bless his heart. Now that he is becoming more aware of his surroundings will they let him have a teddy bear or something to comfort him and hold onto when Mom and Dad have to leave??
    On another note, it sounds like he is improving and it's great that he is able to make sounds when covering his trach. Once he gets used to that, you know he is going to love talking to all of the family!! We think of you all every day, several times a day.
    Love and hugs from Austin, Texas
    the southerland family...

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  16. It is 11:30 pm and I am concerned. I know I shouldn't rely on your postings every night, but truth is... I do. So, I am praying because I am worried something is wrong. Hope it is nothing and you are just too doggone(no idea how to spell that!) tired!Love you! Missy

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