Archive for April, 2014

As it turns out, Ashley stuck to her guns. The doctors finally installed Tyler’s artificial jaw. After a 13-hour drive, they are now home and dealing with recovery process. He will see the pediatrican for an MRI and other test. He has a lump in his breast that needs to be examined. Pray that it’s not cancerous!

Tyler also needs to go to Atlanta once a month for pain management. The center told Ashley to call Medicaid to find out if there is help to pay for transporting him there.

Tyler is down to 65 pounds at age 13. That is really scary. Darlene said she watched Papa help Tyler to the bathroom and back and it brought her to tears because he looks so so little.

Tyler may have to have a feeding tube soon, but has to see the nutritionist first. They will arrange for a surgeon to put in a feeding tube if he needs it. Darlene says he looks “just so wore out and tired.”

Darlene sends her love and thanks God and everyone for caring and loving Tyler and his family.

There have been a few gaps in Tyler’s history over the last few months. January really threw the family a curve ball. Tyler was to have surgery January 24, but the family was in a bad car accident on January 23. The surgery was delayed until April 18th. This is Tyler’s 60th surgery. What follows is a summary of updates regarding Tyler’s surgery so those of you following his progress here know what’s going on.

March 21, Darlene gave us an update on her condition. After her weight loss surgery, she suffered an infection that caused complications.

March 23, Tyler’s Cruise-In fund raiser went well. It was blessed by fair weather and the family raised about half the money needed to travel for Tyler’s surgery. They are unable to fly and because of the January car accident, don’t have a proper vehicle to drive.

April 15,  The family departed for Tyler’s surgery. Unfortunately, they must go through this without their greatest advocate, Dr. Rodriguez. He no longer works at Johns Hopkins. But, Darlene being able to go along is a blessing, especially with the medical complications she has been having.

April 18, Tyler’s mom had to make some painful decisions. In the past, doctors have tried using bone from Tyler’s leg (on more than one occasion) to repair the damaged jaw. These operations have failed, leaving Tyler still without a functioning jaw and now with screws to hold the bones in his legs together. The bones are so soft from all the cancer treatments that the screws often become loose, giving him pain when he walks. No wonder Ashley refused when the doctor said he wanted to take some of Tyler’s rib bone to try again.

April 19,  Tyler’s surgery took place. He is okay but in terrible pain. He was discharged to Ronald McDonald house because of a lack of insurance. This kid belongs in the ICU. It’s painful to watch from so far away!

April 22, I emailed Darlene for details on the surgery, whether they used rib bone, etc. I will update the blog as soon as I have the details.

Please keep praying for our dear little Tyler!

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