Aidan Penner Prayer Update From Keith and Cheryl Penner Oct 6, 2010
Hello friends,
Thank-you for caring and praying for us. We are so blessed to be able to reach out to friends for prayer and support.
In order to protect Aidan from some of the more frightening aspects and possible outcomes of the surgery, we are asking that you not discuss the details of this update with Aidan or any of his peers. We are carefully managing his emotional state as he is often feeling the sadness of his situation. We provide this information so that you may pray with greater clarity.
Praise the Lord that Aidan is back in school and thanks to increased medication, a teacher’s assistant in the class, and naps every day at 10:30, he is managing to get through the school day. He has a fabulous teacher, Lindsey Trugdian, understanding and compassionate classmates, and a supportive and caring teacher’s assistant. He has been regressing emotionally and physically in many ways. Academically he is doing ok although many of the tasks that came easily are now very challenging. It is difficult to sort out the effects of the medication and the constant seizures. He has seizures daily and the length, severity, and type of seizure vary. He may drop to the ground and shake, have many sudden jerks, or stare and be unresponsive for minutes at a time.
He is usually in quite good spirits considering his exhaustion and the frustration of having random seizures and missing out on many things. He does also struggle as he recognizes the many things that he cannot do as well as he once could and in which his peers excel. In spite of the deep sadness he feels, he is extremely affectionate and gets excited about the good things he enjoys.
The long severe clusters of seizures that he was experiencing for much of last year have receded due to the extreme doses of medication. The medicine leaves him exhausted and in many ways sedated. He has “twinges” throughout the day; these are mini seizures and he sometimes feels panicked and anxious that larger seizures are coming. He is at the maximum dose of medicine and continues to have seizures and they have tried at least 4 different medications.
We met with the neurosurgeon on Thursday. We waited 2 months to get the results of the functional MRI from Vancouver. The neurosurgeon explained that they did not get any useful data from the test and there was little chance of getting better results a second time. The FMRI is an experimental procedure and we are thankful that they attempted to use it for Aidan’s benefit. They will proceed with surgery without the FMRI data.
We have an appointment for a preoperative MRI on November 12th. The purpose of this procedure is to produce a map of Aidan’s brain to calibrate with their surgical instruments. He will likely be at least partially sedated for this procedure. The first surgery is scheduled for Nov 15th. This is the surgery to place a plate across the left hemisphere of his brain, which has 65 sensors on it. These sensors will be used to detect the location of the seizures and the areas of the brain that are still functioning.
Aidan will stay in the hospital during the days that follow. He is kept in a room with a cot for a parent to sleep and the sensor will be connected to computers to collect the information. They will record any seizure activity that the sensors detect and after they have enough naturally occurring data, they will begin to initiate sensation to attempt to map the relevant area of the brain. Once they have as much information as they can obtain, they will discuss the results with Cheryl and I and we must make a decision about proceeding with surgery.
We asked the neurologist many questions about possible outcomes of the surgery, of postponing surgery, of doing partial surgery, etc. There is much that is unknown and his answers were mainly “we don’t know.” “We won’t know until he wakes up.” I would characterize the possibilities as varying degrees of “Not good.”
The neurologist believes that a weak right side is likely. This could mean his right hand is a “helper hand”, used only to hold a piece of paper to the table or clasp a jacket to his chest. Or he could be paralyzed on the right side.
We don’t know where language is located in Aidan’s brain. Typically language is on the left side of the brain, which is where Aidan’s brain is damaged. Aidan’s language function is very strong, which could indicate that his language has rewired to the right side of his brain. The test may show that there is no language in the area that must be removed and that would be very hopeful.
For the first time the neurologist said that his right side vision in both eyes would be gone after the operation and that he will never drive. He was surprised that Aidan didn’t already have that condition and then commented that maybe he does and we don’t know. This was shocking news for us.
We will know more about the “chances” of the varying degrees of bad once the sensor plate has gotten some useful information. The sensor plate, however, does not always work. If the plate is put in and if it does not get useful data then we must still make a decision at the time of the plate’s removal on Nov 24th.
We feel like a crushing weight is laid across our chest. The outcome of surgery is irreversible and life changing for Aidan. His life has changed dramatically over the last year and he is in many ways a very different child than he was last summer. The neurosurgeon said that he will not be seizure free, but their goal is that seizures can be controlled by medicine postoperatively. He said that is it better to have surgery now than to wait because there is a better chance of controlling the seizures and normalizing Aidan’s life. The longer he has to live with the frustration and lack of control and emotional turmoil of constant seizures, the more those effects will shape who he is and how he sees life. But what about life with paralysis?
We would appreciate your prayers for Aidan’s healing.
Jesus tells the parable of the judge who refused the request of a lady. The lady pestered the judge until, out of sheer frustration, he granted her request so that he could get some peace. This was Jesus’ template for prayer. He ended the story by posing the question: “But when the son of man returns, will he find faith on the earth?”
It is our sincerest, heartfelt cry, that you would join us in pestering God. Even a cantankerous judge can be convinced to act when pestered. Surely a loving God can intervene, and all the pestering people will praise Him all the more as a result.
Thank-you all for joining us in asking God for another miracle for our son, Aidan.
Keith and Cheryl (Popjes) Penner
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