Sunday, March 1, 2009

From 80 to 30

What a difference a day makes. Yesterday at this time we were getting ready to head out of Florida. I was dreading putting long jeans on again because it was quite warm and humid. Now we are expecting 4 to 8 inches of snow tonight... Oh well it's good to be home. I will post more pictures later but here are a couple from our trip.



He did make it to the beach one day..



And a few dips in the pool...



Here is something that the staff from the hotel made. They were wonderful and made us feel so very special. The shells were made of chocolate and the sand was made from graham cracker crumbs.

Now for some bad news. Cody will have to stay another night. His oxygen level is 94% when he is awake. It is 84% when he is sleeping. The beast is advancing in his lungs. He will get a CT scan today if they can schedule it. Cody's liver has swollen to the point of leaving very little room for food in his stomach but they still want to put the tube back in his nose. His bilirubin numbers have almost doubled. It appears that the liver will possibly do him in before the beast will. He needs to be sedated for the tube but they are not sure if his liver can handle the propathol that is used to sedate him. I don't really think I want to put him through the install of the tube without sedation. God please help him! I don't want my boy to go through this anymore. Please help him...

Help needed:

This blog has been a blessing in so many ways. It has given us a way to relay information to our loved ones that live far away. It has been therapy for me giving me a way to relieve stress and express myself. It has made many of you aware of a disease that you have never heard of. But it has seemed to cause a problem that I didn't foresee. As many of you know we have chosen not to tell Justin and Daniela about the dire straits that Cody is in right now. We didn't want to say anything until we absolutely had to. Well, unfortunately I think the time is near. A good friend of our family called me while I was traveling into the hospital today. She teaches at the school that our children attend. She called to warn me that the word of Cody's very serious condition has been spreading amongst the kids at school. The information that this blog conveys to people is written on more of an adult level and isn't written for children per say. OK, to the point. I'm asking all the parents and friends of children that go to Bennett Elementary School to please speak with your children. Please explain to them that Cody is very very sick but we still hold out hope that a miracle can happen. Our fear now is that Justin and Daniela go to school and hear some child say "I heard that Cody is dying." Or there may be that child that does not get along with Justin and Daniela and out of spite say something very hurtful. In the days, weeks, months and years to come we will have a tremendous amount of hurt to address. Please explain this situation as best as you can with your children. I know you all understand that we are trying to protect our children the best we can.

39 comments:

elizabethnyc said...

Mickey, those pix are wonderful - the one of Cody on the beach is so special - when you click for the full size photo, you can see sand between the toes and the wind at his hair, just the way the beach should make you feel. precious...

Prayers continue for comfort and peace for Cody and all of you.

Hugs to all,
ElizabethNYC

Super B's Mom said...

Praying that God will lead you with this next procedure. I pray for peace and comfort for Cody. The pictures are lovely. Cody is a beautiful child.

God bless.

Donnetta said...

How sweet of the hotel staff to make that for him!!

You all continue to be in my prayers

Tammy said...

I stumbled upon your blog and have been following your precious Cody's journey. The beach pics are wonderful.
Many prayers of peace for Cody and your whole family.

TammyK
Virginia

Anonymous said...

I feel the pain and anguish in your prayer for comfort for Cody. Know that many prayers are continuing for all of you.

With love and compassion,
Max's Nana

Mel said...

I will be praying for all of you, for comfort, for pain relief, for precious memories, and for peace. Thank you for posting the pictures.

BIG MO said...

My GRANDSON is a handsome young
fellow.How can that BEAST be so
cruel... His hair has grown back
so beautiful again. CODY, I LOVE
YOU so much. That was great what the hotel made for him. I'm so
glad so many people have cared and
love you all even tho they have never met you. I still keep hanging
on to the HOPE that something
great will happen. I know it's
hard but you & Diane take care of
each other too. As always I check
this blog many,many times a day.
Thanks so much for the pic's. Much
LOVE and many KISSES to you all.
MOM

Emily's Blog said...

Just a question, but one that might help: I have a feeding tube. It's a j-tube, so it bypasses my stomach and is inserted directly into my small intestine. The surgery took about 1 hr, and the recovery time was about 1 day. I was on very little pain meds afterwards.
Is putting a j-tube or g-tube (directly into the stomach) not an option?

I loved the pics and the "bowl of goodies" was so creative. I'm glad he got to enjoy the beach and the pool.
I'm still praying for a miracle.

Becky said...

The pictures are beautiful - thanks for sharing. We will pray very hard that Cody is not in pain and that any procedures can be minimized. God be with all of you.

Anonymous said...

Mickey & family, our prayers are continuing for all of you. May God give you the comfort and peace you need. Cody is a wondful little boy. God bless you all.Dave & Linda

Lindsay D'agrosa ? said...

i pray every day for comfort of cody, a pain free and enjoyable day with his beautiful family. we all love you cody, keep your chin up through these incredibly hard times.

~lindsay

Anonymous said...

I just love the photo of Cody looking into the water...you can tell that he is taking something from what he sees out there in the waves. Hoping that the procedure to get the tube in goes smoothly and that you all ride out the storm. I bet Justin and Daniella are excited--I know my boys are counting on being home from school tomorrow.

Kate(feetdon'tfailmenow)

Gettin Older said...

Great pictures, thanks for sharing. Continued prayed for wisdom, strength and comfort.

Anonymous said...

I just loved the pictures. It gave me warmth on this cold bleak winter day. John called it is even warmer in Germany. Prayers are with you all. Call if you need anything. Keeping faith in WV.

Love,
Cheryl

Dottie O said...

We still pray for a miracle healing for Cody. I also pray that the parents in the schools will use discernment when they talk about him to Justin and Daniela's classmates.

I hope the feeding tube isn't an ordeal and he gets some relief from pain.

Dottie

runrgrl2007 said...

I am praying for your miracle as well as Cody's pain.

megan said...

The pictures of Cody on the beach are great, by chance where did you stay? I pray that your children are able to attend school without fear of other children spreading word of how sick Cody is I pray that GOD will lead you to the right words at the right time. Blessings to your family

noahandlylasmommi said...

I am praying for your sweet little boy. Also for you and your family. I cannot imaine all of the things you must be feeling.

Phyllis said...

Praying for your entire family.
Phyllis in Oklahoma

Faithfully Yours said...

Praying for you guys! God is the ultimate healer!

Anonymous said...

Mickey, Thanks for sharing the pictures. I feel for the stress that you are under right now, just know that you do not walk this walk alone. Rely on the Lords strength to help you through.
Continued Prayers of healing, strength, and peace!
God Bless,
Bruce

Babs said...

My heart is full with your story, my prayers are with you and your sweet family in this difficult time. Cody is lucky to have you as his dad as much as you feel lucky to have him as your son. Prayers...

Marlo said...

We didn't tell our other children that their sister was dying until the last day. I wish now that I had done it a bit sooner. They didn't really get a chance to say goodbye. The trouble is, you never know when it is going to happen and I didn't want them to have to live with that knowledge for too long. Hopefully you will know when the time is right. The words will come even though right now it seems impossible.

Anonymous said...

My prayers continue for Cody. There's much to be thought about from that picture of Cody looking out to sea. He's such a special child.

DollarBill

Sam said...

The pictures that you've posted are the most amazing pictures I've ever seen. Even in the face of such sorrow, you are taking your family and creating wonderful memories. You will treasure those pictures for the rest of your life, no matter what happens. My heart breaks for you and your family. Please know that by sharing your story you have touched so many people in a way that cannot be explained. You guys are in my prayers.

MammaG said...

You and your family are in our prayers! My friend Jeri posted a blog about your family and that is how we have come to know you. The Lord can do anything. I admire your family and yourself. PLease remember that their are so many people lifting up your pleas to the Lord! God BLess You!

The Burk Family said...

Heavenly Father,
We pray that you would breathe life until this little boy. Holy Spirit breathe life into little Cody's Body..In the name of Jesus!"

"But if the Spirit of Him that raised up Jesus from the dead dwell in you, He that raised Christ up from the dead shall also quicken (bring life to) your mortal bodies by His spirit that dwells in you." Romans 8:11

"It is the spirit that quickens: the flesh profits nothing, the words that I speak unto you, they are spirit and they are life."

God's Word is Life...Speak His Word over Cody!

We continue to pray for your family.

Love in Christ,
Dana Burk

Anonymous said...

From across the pond... Seeing the pictures was great. Hope that Cody and the family enjoyed the trip aside from a few bumps you had menyioned earlier. Not to much I can do from here, but know thoughts are with you all.

John (in Germany)

Jennifer said...

Mickey/Diane - Dave and I have you both in our hearts and prayers, we too are praying for a miracle. please, do not hesitate to call if you need someone to watch the kids if you and Diane need to run out with Cody. DJ so misses Cody, and is already up this morning asking if Cody can come to play in his new sled. I too, have shielded him and cannot bring myself to talking to him, He prays that Cody feels well soon. - Jennifer

Jennifer said...

Praying for all of you!

Anonymous said...

Cody, I hope you are able to look out the window and see the beautiful snow - isn't it white?

Hugs to Cody - Pat (ACCA-NCC)

Anonymous said...

So sorry to hear that you have to worry about someone telling your other children what is going on with their brother. It is a sham that you have to add that to your worries. I hope that it dosn't keep you from posting. Their are so many of us that only know you thru this post that are praying for comfort,peace, and strength for your family with what ever your future holds. I will pray for you all each and every day. May god bless you!

Aggie said...

I have been praying for your family daily since I came across your blog through another blog that I frequent...and I will continue to keep you all in my prayers.

I have never experienced having a child who is seriously ill and I can only imagine all that you must be going through each day. Though I cannot fully comprehend what you must be feeling, my heart aches for you.

One thing that I noticed in the comments on your last post is that many people commented that the "darkest times are ahead of you." I am sure that the pain that you are feeling for your son as you see him in pain is agonizing. As mommys and daddys we want to be able to kiss the boo-boos away and often we can kiss the little bumps and bruises away. In a situation like this, it must hurt so much to not be able to ease his pain.

I have been praying for the right words to share with you and the fact is that since I have not walked in your shoes it is so difficult to not come across as a know it all who really knows nothing at all. But the truth is, there is One who knows you rpain, there is One who feels all that you are feeling right now, and though it is so hard for us to comprehend there is One that love Cody more than anything else (since we love our children so very much we can never imagine that there could be anyone who could ever love them more). It is His comfort that I pray for you know. It is His comfort that I pray for Cody each moment. It is His peace that I pray He pours over you. Because you see, none of us know exactly what you are experiencing but He certainly does.

I pray that you will cling to Him and that you will be filled with His perfect peace and the hope that comes from Him alone.

I will continue to pray for you and your family and I pray that God will snuff out your "darkness" for He is the Light of the World.

"For you light my lamp; The Lord my God illumines my darkness" Psalm 18:28

Praying for a miracle!

Aggie Lawler

Anonymous said...

Mickey I love the picture of Cody on the beach looking out at the ocean. I hope Cody gets released today and home in time to play in the snow.
Praying for peace, comfort and some family time together at home.

Dan

Anonymous said...

The pictures were great. I will have a couple of new pictures to add to my wall here at work. I hope Justin and Daniela are enjoying the snow. I wish Cody could get out there and have some fun in it. Prayers for you all.

Mickey and Diane, you have both been great at knowing how to much to pass on to Justin and Daniela. You will know when the time is right.

Susan and Jonathan

Anonymous said...

What lovely pictures, Mickey. I'm so glad Cody got to the beach on your trip and that he liked the pool. Praying every day, for all five of you.
Tamara (Runlonger)

Anonymous said...

Beautiful pictures Mickey and Diane. As always, continued prayers for Cody and the whole family.

Greg
(mysol)

Anonymous said...

Mickey and Diane, I may have said this before, but the Colorado Papas wish very badly we were closer to you. We are terrible at keeping in touch, but please know that you guys are in our hearts and prayers every day. Katherine (and sometimes Gabby) have even been praying the Rosary for Cody over the last several months. You have lots of friends here in Colorado praying for you all and thinking good thoughts for Cody. You are amazingly courageous parents and an amazing family. We love you, Julie and Mike

Linda said...

Hi Mickey!!!

Sorry I had to leave today-I forgot I didn't drive and my husband was here to pick me up! Let me know if you need anything! I'll see you guys in the morning. Praying for peace and no pain for Cody! <33 you all!