Archive for January, 2009
Hi everyone, sorry the updates have been slow; we are having a really hard time around here. Tyler is still hurting and we haven’t heard from John Hopkins Hospital. We are hoping they will contact us soon. Until then, I guess we will have to deal with things the way they are.
PLEASE KEEP TYLER IN YOUR PRAYERS
Tyler loves all the cards. It makes him smile. Thank you all for loving Tyler!
Tyler’s Grandpa Cox is dying with cancer and they say he’s only got a day or two left. We have been sitting with him day and night, so please put him in your prayers. He’s a good man and will be missed.
We were told that there’s a piece of metal plate still in Tyler’s jaw and it was attached to bone that is dying and that’s why he’s hurting. They already took two metal plates out.
Medicaid put Tyler on Blue Cross insurance and doesn’t want to pay. It will only pay one hospital here in Greenville and that’s St. Francis. It wont pay MUSC or Maryland. Ashley called and they are taking him back off that insurance and back on Medicaid but he can’t get off and back on medicaid until February. I cannot understand why they would just put him on this insurance, but they did. So this leaves Tyler in a mess trying to get help. Tyler has been doing great for a few weeks then all at once he’s hurting. He could hardly eat at all.
Doctor Rodriguez’s office at John Hopkins called yesterday and said that Tyler needs to stay under care at MUSC until the doctors at Johns Hopkins can evaluate the model of Tyler’s head, which they are waiting to come back. They will study it and let us know if they can help Tyler. We will contact Doctor O’neal tomorrow and see what he says.
MUSC says nothing can be done as far as fixing Tyler’s jaw. I hope that we don’t hear the same from Johns Hopkins.
It’s in Gods hands. At least they can help with the pain and help with his legs. His legs hurt just about every day. They say scar tissue… It hurts me so bad to know that Tyler must go through so much and that there’s nothing I can do but be here for him, loving him and wiping away his tears when he hurts, and praying for him. It was so nice to see him the last few weeks not hurting.
Thank God I have my faith and that there are so many people that love Tyler and his family!
Tyler is having a lot of pain in his jaw and saying that his few teeth are hurting. He was crying last night and again tonight. Ashley gave him prescription medication. He is out of medicine and we will have to get in touch with someone tomorrow to get him more help with his pain.
We called Johns Hopkins today and the doctor is going to call us back. They are making a model of Tyler’s head and studying it to see what the doctors can do to help Tyler. Please keep Tyler in your prayers. Shriners hasn’t sent the x-rays of Tyler’s legs, but will be sending this week. We love you all and hope you had a wonderful new year.
Well I finally got back online at the camper, so I wanted to update Tyler’s page. We have been staying in the camper in Charleston since Wednesday. Tyler has seen three doctors already. Dr. Gross said that he thinks Tyler will walk in time. We asked him to send TyTy to another doctor or scan his leg, but he told Ashley he didn’t think it was necessary. He said that the pain will go away; it will just be longer for Tyler because of all the chemo and radiation.
Tyler is seeing Joanie the therapist at the camper. She said she thinks Tyler needs scans of the leg done and that she would call the doctors. Also Dr. Davis said that she will wait to put the mouth piece she made for Tyler’s mouth till he has the ear operation. She will go in the operation room and place this in Tyler’s mouth to hold his jaw over and to help him with eating. We will see Dr. White on the 11th to find out what he plans to do with the hole in Tyler’s ear drum and when that surgery will be. Tyler then goes for cancer scans on the the 7th. He has to be put to sleep and the scan takes all day.
Please pray for Tyler. He still cannot walk and he cannot hear well. He is having a lot of pain in his leg. Our God is so good. God is able to heal Tyler. We will be here through the 12th and then get to visit home before TyTy’s next surgery. I want to say thank you to all of you once again for your kindness for caring; it means so much!
Your kindness will never be forgotten. May God send his blessings to each one of you. This will be Tyler’s 26th surgery. Please keep storming heaven for our little trooper!
Tyler is at the camper in Charleston If you would like to send get well soon cards, gifts.
ITS NOT MY HUSBAND THAT PASSED ITS TYLERS GREAT GRANDPA ITS MY HUSBAND DADDY AND WE ALL LOVED HIM SO MUCH
Tyler is doing really well; he’s not having too much pain right now. Thank God for that! And that hes such a trooper. He’s been playing and acting like an eight year old lately. Tyler loves his dog, Pearl, that Steven got him and he plays with her a lot.
Tyler and Jayden now have a new brother; his name is Eathan, who was born own the 17th of January (one day after mom Ashley’s birthday). He’s doing really well, weights 6 pounds 2 oz. Both mom and baby are fine.
We haven’t heard a thing from John Hopkins. Its only been a few days from the 20th so we will wait a couple more days before calling. The 20th was when we were told that the doctor planned on looking at everything and planing surgery for Tyler. I pray that they are going to help Tyler and not tell us the same thing the MUSC people have told us; that theres no doctor in SC that can help. We will have to contact MUSC Hospital if we don’t get some answers soon. Tyler must stay under a doctor’s care. He has so many complications from the cancer.
Tyler has stared eating corn flakes and milk and ice cream. That is a little more to add to his diet. We worry about that because there are only a few things he will eat and he’s twenty pounds underweight. I have my faith and know that God is with us. Please keep Tyler and our family in your prayers as we still have a long journey ahead with this wonderful little boy.
As most of you know, Grandpa Cox passed away. We will be getting the homestead and plan on moving some time this year. We were planning on moving and letting Tyler stay here in the mobile home with his mom here, but that isn’t going over so well with him. Tyler said that there is no way that I am leaving him. He told me that he needs me. He needs to be close so that I can rub his legs when they hurt and so that I can hold him when he needs a hug. Then he screams saying he’s going too. At least I know I am loved.
We told Tyler that Grandpa Cox went to heaven and he said, “Why nanny?” He then ask me when he goes to heaven, would grandpa be there to look after him? I assured him that God wasn’t ready for him to go to heaven right now. I gave Tyler a big hug and kiss and he was okay. Baby Nathan is doing wonderful. He’s 22 months now, calls me Mama, and is a blessing every day.
Please keep signing Ty-Ty’s web page as its counted as another prayer for Tyler and he still loves all the snail mail. Thank you all so much for that. There were a lot of people that wanted tyler to answer. When hes older, he will answer. I have saved all the mail, but he’s just learning to write. But he is really smart and learning well. We love you all.