Sunday, May 31, 2009

Sunday, May 31

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

9 comments:

  1. If you're looking for shade check online for "sun sails." I looked at them last year for my deck. They are made of strong material (I think like sails on a sailboat?)and you can get them for almost any size or shape. They could easily shade a play area for him... just came to mind reading this post! Good Luck, praying for you this week!

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  2. Everything will work out. A year or so is a long time, but a year or so out of a lifetime really isn't so much. Rusty still wants Clay on his team and I'm sure that you will have a whole bunch of folks hanging out in the shade over the next year or so. Besides the sun just gives you wrinkles anyway. The gym out there will be cleaned and available if you need it within a few weeks. It is big enough to ride bicycles in. Also think of how many folks that you know who have really big barns and arenas. Little boys love barns. You will be surprised how many places you find that are shady once you start looking for them. I bet carport and awning sales really go up around Young county. Chance and Dee Dee as big of a task as you have ahead of you, you know that you will make things better than not so bad, you will succeed in making the next year or so fun. If they have to send Clay home with a trach, he will be okay. If I had to send one of my own kids home from the hospital with anyone under those circumstances, I would feel comfortable sending my own child home with you two. God will be with you all the way. After you get settled in your routine, you will get busy doing daily things, and before you realize it, it will all be done. Everything that has happened up to this point has prepared you for everything that is yet to come. God Bless

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  3. I will be praying for all of these new transitions. They are scary but good! He will come to love his pressure garments, Annie doesn't have to wear hers anymore but sometimes asks to wear them. They became like her second skin. Continually praying!! Missy

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  4. Rusty has to sleep in a brace every night to try to flatten out his sternum. At first it was miserable because we couldn't get it situated exactly right and he hated it, but we kind of got used to it and he got used to the feel of it. Now it is just something that we do daily that is a part of Rusty. I'm not sure but I think that Rusty will have to wear his brace as he continues to grow. The upside of that is that he doesn't seem to pay too much attention to things like that. I think that when kids learn to deal with stuff like that when they are really young they learn not to sweat the small stuff. I'm praying that you find everything about the new changes easier once you all get used to them.

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  5. Missy has already posted but I was thinking back of it not being that long ago that Annie was being fitted with her pressure garments. Yet it has already been a year! Time will fly by for you as well. So many improvements. Thanks for your diligence in keeping us all updated. I visited with great Grand dad- Darrell this morning at church. God is good and your family's blessings have strengthen other's faith in the Lord. Thanks again for your sharing of faith.

    Have a peace filled week.

    The Snyder's

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  6. Wow! The possibility of going home seemed so far away 100 days ago and now it's nearing. What a wonderful privilege for his family to take him home - even if it is to the Ronald McDonald House for a while - it means more time with family and friends. God is good and His power is so wonderful to see in His dealings everyday. We look forward to news and continued follow-ups. Love to you all, Dawn & Pam

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  7. Clay--
    We are so excited about your progress. We'll be saying special prayers for you at our Bible school this week in Happy!

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  8. This is all of a sudden snowballing, isn't it? 30 days ago there was a bit of a routine with not that much variance...except the vomiting, and now it is changing by the hour! Yes, Chance and DeeDee, your faith has built a lot of confidence in God for many people. That is one thing about faith...it is contagious. And one person's need to call upon faith builds not only their own faith but that of others they come in contact with. And like Missy and Pomuffin have found out, there will be people many years down the road who will benefit from all you have gone through. Think how Jamie (I think that is his name...the young man who got burned and comes to visit?) has helped you all to see the light at the end of the tunnel....you will be doing the same for someone else. I cannot begin to tell you how proud I am of you two and I pray that God blesses you in so many special ways for your diligence in trusting Him and standing on His word and His promises. I know He has smiles on His face for that as well.
    Love to all the Fite Five, Carolyn

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  9. Sound like he had a great day and so did everyone else. What a joy to hear he's laughing and entertaining his brothers! The year becomes like every other day in the burn center, just another day to enjoy the miracle that is Clay. Pressure garments and sunblock just become so ingrained in your everyday life it will fold into your routine without much thought. There are some great clothing lines that have sun protection built into them. They are designed to protect and keep you cool at the same time. Here are two websites: www.coolibar.com and www.solumbra.com Both have kids sizes. Bass Pro and Cabela's also have some usually Columbia brand, but not sure if they carry kids sizes. If there is anything we can do, please let us know. www.facethefire.org

    Mel and Brian

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