If you read my earlier post this is an update from Russell, Hunter's dad. Please continue to pray for this child as he has a long road of healing ahead of him.
To all who are praying for Hunter,
We would like to start out by saying thank you to everyone for their prayers, e-mails, and kind words of encouragement. We cannot put into words what it means to us to have received so much support from our extended family and friends.
Most of you have received periodic updates on Hunter’s condition through e-mails while we have been in the hospital. Most of those e-mails have originated from Mark Pugh and Jeremy McMath. We would like to especially thank these guys for taking the time to send updates to everyone on our behalf. Thank You!!
Hunter has a very long road ahead of him and we ask everyone for their continued prayers for our little man. The surgery to repair the pressure caused by the Chiari Malformation went well according to the doctors, but it will take a while to determine if the damage caused by the pressure is permanent or temporary.
As of today, Wednesday February 18, 2009, Hunter continues to show signs of reduced muscle tone in his head, neck, and upper torso, and still appears to be in a fair amount of pain. He is being monitored closely to determine if the Hydrocephalus condition that was noticed during surgery is going to be an issue that will need to be addressed surgically.
A test was performed yesterday to determine if he had regained the ability to swallow. He did swallow a trace amount of liquid during the procedure and, with time and therapy, it is possible that he could regain his ability to swallow and feed on his own. In the mean time, in order to maintain the proper nutrition level, Hunter will need to have a feeding tube installed surgically into his stomach. The doctors are currently scheduling him for installation of the G-tube…..a procedure that will more than likely take place toward the end of this week. Hunter is also scheduled for an MRI tomorrow to determine how his body has healed from the surgery and to see if the Hydrocephalus needs to be addressed. From what we know right now, Hunter should remain at Children’s Hospital at least through the end of next week……..however, that is subject to change.
Along with the Chiari Malformation and Hydrocephalus, Hunter also has a Basilar Invagination. The Chiari Malformation puts pressure on the spinal cord from the back side of the head……..the Basilar Invagination causes the same situation from the front side of the head. Basilar Invaginations are caused by different things, but in Hunters case it is caused by the way his bone developed at the top of his spinal column.
We are hopeful that Hunters symptoms and problems were being caused from the Chiari Malformation; however, it is possible that the symptoms are a result of the Basilar Invagination. Only time will tell.
The Good Lord has blessed our family in many ways and we continue to believe that our little boy is on his way to recovery. This is not a fast process, and definitely not a process that we can become impatient with……our son is in the hands of the Lord and we continue to petition Him for His healing mercy.
We thank each and every one of you for your e-mails and apologize for not responding. We have read each and every one of them, and definitely intend to respond to each of you at some point in the future. A good many of you have heard of, or have experience with, a Chiari Malformation. It is a developmental condition that has an average age of onset of 27. It is a condition that is very rare and very serious in an infant. Our doctor has performed 350 to 400 of these surgeries, but has only performed 5 on infants under the age of 6 months……Hunter makes number 6. There is not a great deal of historical data on infants treated for this condition. Therefore, we have to be patient and allow God to work.
Thanks again for your prayers. We ask that you continue to pray for Hunter that he will be healed and that his health will be restored.
There are surely names missing from this e-mail list who need to be included, so please forward this e-mail to any person who has been praying for, or, will continue to pray for, little Hunter.
Sincerely,
Russell, Dee Dee and Hunter
1 comment:
i've been looking for information on kids with basilar invagination all day. a friend of mine just sent me your blog. i can not find much on it, it's so rare. i just took my daughter to the neurologist today and we found out that she has bi. she had heart surgery and a tef repair after she was born. she came home at 3 months with a ng tube and got a g tube put in at 4 months. we were told she had torticollis which is in the muscle. to find out its in the bone is horrible. all of this therepy for the past 4 months wasnt improving her neck. i'm just happy we found out soon enough. if you guys have any info on this i would love if you could email it to me. thanks so much! my email is koonsjami@yahoo.com. you guys and your family are in our prayers!!
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