Friends,
I know Kris tried to send you an updte tecently about Cassie's and my trip to Seattle for eeg monitoring. I have been sleeping with her in the hospital room, and there has been no way to send out e-mails like we could last time, becuase we were only in the hotel room the first night before she was admitted.
We will be heading back to Alaska today. As Kris has already epressed, please pray that she will not have a seizure during the flight.
Following 4 full days of obserbing her seizures, the doctors are all sure that these seizures are a continuation of what she was having before. For kris and I, they seem less severe, but that's probably because she doesn't scream like she had in the past.
As for why 4 months seizure free and then having them start backup, the only eplanation for that is that 4 months tends to be the point when the brain begins functioning normally following the trama of surgery (or theof that of a stroke victum, for that matter.)
The good news is that Cassie never lost any motor skills in the last surgery, and all testing at that time revealed that most of her brain activity seemed to be coming from the right side anyway.
On monday, we travelled fro Harborview to Seattle Children's hospital for an FMRI (or a FUNCTIONAL MRI). They cannot perform this procedure at Harborview (yet).This is where they test right/left side while Cassie is actively doing things with her hands and feet during the scan. The idea is that the brain detail sort of "lights up" on the MRI showing where that activity originates. If you recall, this same sort of thing was done ust prior to her surgery, oly uisng Chemicals and muscle stimulation. (A WADA test).
The FMRI results will really nail down where things are happening in terms of control, and where they aren't.
But it will be a couple weeks before we know the results of that, along with the results of her stay this week. But they can tell us that she is indeed still having seaizures (no kindding, right?) and that they seem to be localized to the left side of the brain.
While we wait on all of these results, Cassie may be prut on an additional medication or two (There are still 2 or three she hasn't tried.) I hate the idea of having to go thru that again, but it seems silly not to if there is any possibility that medication can still bring everything under control. In short, the tests will also determine if an aditional surgery is an option.
How do we feel about all this? Well, I'm a bit worn out being with cassie all week. For the surgery back in August, Kris and I were both here so we were able to sort of break down at different times . . . . . I can;t figure any other way to put it. Now I see why kris was so haggerred after returning from Cassie;s first observation back last May, that led up to the surgery in August. Cassie is still my hero and seeing what she puts up with just shames me when I start feeling miserable.
Our friends here in Seattle are still here, and Pastor Ray has once again been a real brother in some difficyult times. I need to especaially thank his church members later in a leter . . . but for now, just know that the Body of Christ is still active and your prayers for our well being are being answered.
God bless each of you.
Gary & Cassie
Saturday, February 25, 2006
Monday, February 13, 2006
We Need Your Prayers 2-13-06
Dear Loved Ones,
We need you. You have carried us through some tough times with your love and prayers and I’m afraid we need your prayers again. We brought Cassie home from Harborview hospital Seattle, WA last August with high hopes that her living with seizures was finally over.
But about a month and a half ago she started having seizures again. We made an appointment with her neurologist in Anchorage right a way. He felt that she was experiencing seizures because she had gained so much weight so quickly and her seizure meds had not been increased to match the additional weight. He also wanted to change her from one med to another that had less side effects. To make a long story short, it has been grueling and her seizures have increased in frequency as well as intensity with each passing day.
Today was the worse day so far. Our morning had been rather quiet and uneventful but starting about 1:30 this afternoon Cassie has had a total of 7 complex partial seizures today. Each one lasting at the least 4 minutes, some lasting as long as 7 minutes. It is difficult to explain or express how awful today has been. On our way home this afternoon all I could think about was reaching out to you and asking you to once again carry us along with your love and prayers. We are so anxious to be on the giving end rather than so needy. But, we love you and appreciate your deep love and faithful prayers for our family. Cassie and I have many deep, heart to heart conversations; one, we were having just a few days ago concerned the depth of love we feel from so many people all around the world. The thought occurred to me that GOD has seen fit to place us so firmly in the hearts of so many people-could we ever thank Him and praise Him enough?!
As a Mom I would like to impose on you with one other matter. It is so much my heart to be home more and out in the work force less. I love the work that God has provided for me and thank Him for allowing me to work in such a loving and comfortable environment. Cassie accompanies me to work just about everyday. She is quite comfortable hanging out with me at work and has pleasant places to rest when she needs to, but there would be a lot less stress dealing with her seizures from home rather than trying to deal with them while phones are ringing and people are coming and going.
And now, at night while we sleep, every noise seems to be magnified as we spring up out of bed wondering if she is having a seizure. And Gary was downstairs tonight. As he heard thumps or bumps upstairs, he responds with a "Everything OK?" "seizure awareness and sensitivity" has once again have taken over our lives, and we are tired and worn out.
Gary’s work is flexible enough that he often times is able to stay home with her. He has been looking for work that would provide sufficient income to allow me to cut back to part-time work. Please pray with us that God will lead him to a good position that would provide adequately for our family. Thank you.
“They that wait upon the Lord shall renew their strength, they shall mount up on wings like eagles, they shall run and not grow weary, they shall walk and not faint.” We welcome your company and prayers as we wait upon the Lord-“even soldiers need a quiet place to rest.”
Those are words from the song “The Warrior Is a Child.” Cassie plans to sing that song in church on March 26. It brings me to tear every time she practices. Truly she is a Warrior who brings much glory and honor to her Savior. Her Daddy and I consider her a Hero!
We are also very proud and blessed to see Chelsie doing so well with her full-time job in Greenfield, IN and taking 2 college classes. She is looking forward to returning to AK in May and has offered to take classes locally at Kenai Peninsula College next Fall so she can spend more time with Cassie. An offer like that from Chels carries a lot of value because she is so committed to getting her degree. We are hoping Cassie will be doing much better by May but would welcome the chance to have Chels living close by again-we miss her!!
Ty has been assigned a temporary position on a platform as a prep-cook. We are praying the company he has been contracted out to will decide they want him full-time and hire him on. His work at ASRC has been hit and miss since the first of the year so he has been learning a lot about stretching his dollars. We get to see him about once every couple of weeks, he comes over for some home cooking. His favorite, of course, is sausage gravy and biscuits thanks to “Dig” at Dig’s Diner in Warsaw, Indiana. Not that I could even come close to making it as good as Dig, but I sure enjoy trying and seeing that wonderful smile from my Son when he gives me a big hug and says “Thanks Mom!
Through it all, GOD IS GOOD!
With all our Love,
The Harris’
We need you. You have carried us through some tough times with your love and prayers and I’m afraid we need your prayers again. We brought Cassie home from Harborview hospital Seattle, WA last August with high hopes that her living with seizures was finally over.
But about a month and a half ago she started having seizures again. We made an appointment with her neurologist in Anchorage right a way. He felt that she was experiencing seizures because she had gained so much weight so quickly and her seizure meds had not been increased to match the additional weight. He also wanted to change her from one med to another that had less side effects. To make a long story short, it has been grueling and her seizures have increased in frequency as well as intensity with each passing day.
Today was the worse day so far. Our morning had been rather quiet and uneventful but starting about 1:30 this afternoon Cassie has had a total of 7 complex partial seizures today. Each one lasting at the least 4 minutes, some lasting as long as 7 minutes. It is difficult to explain or express how awful today has been. On our way home this afternoon all I could think about was reaching out to you and asking you to once again carry us along with your love and prayers. We are so anxious to be on the giving end rather than so needy. But, we love you and appreciate your deep love and faithful prayers for our family. Cassie and I have many deep, heart to heart conversations; one, we were having just a few days ago concerned the depth of love we feel from so many people all around the world. The thought occurred to me that GOD has seen fit to place us so firmly in the hearts of so many people-could we ever thank Him and praise Him enough?!
As a Mom I would like to impose on you with one other matter. It is so much my heart to be home more and out in the work force less. I love the work that God has provided for me and thank Him for allowing me to work in such a loving and comfortable environment. Cassie accompanies me to work just about everyday. She is quite comfortable hanging out with me at work and has pleasant places to rest when she needs to, but there would be a lot less stress dealing with her seizures from home rather than trying to deal with them while phones are ringing and people are coming and going.
And now, at night while we sleep, every noise seems to be magnified as we spring up out of bed wondering if she is having a seizure. And Gary was downstairs tonight. As he heard thumps or bumps upstairs, he responds with a "Everything OK?" "seizure awareness and sensitivity" has once again have taken over our lives, and we are tired and worn out.
Gary’s work is flexible enough that he often times is able to stay home with her. He has been looking for work that would provide sufficient income to allow me to cut back to part-time work. Please pray with us that God will lead him to a good position that would provide adequately for our family. Thank you.
“They that wait upon the Lord shall renew their strength, they shall mount up on wings like eagles, they shall run and not grow weary, they shall walk and not faint.” We welcome your company and prayers as we wait upon the Lord-“even soldiers need a quiet place to rest.”
Those are words from the song “The Warrior Is a Child.” Cassie plans to sing that song in church on March 26. It brings me to tear every time she practices. Truly she is a Warrior who brings much glory and honor to her Savior. Her Daddy and I consider her a Hero!
We are also very proud and blessed to see Chelsie doing so well with her full-time job in Greenfield, IN and taking 2 college classes. She is looking forward to returning to AK in May and has offered to take classes locally at Kenai Peninsula College next Fall so she can spend more time with Cassie. An offer like that from Chels carries a lot of value because she is so committed to getting her degree. We are hoping Cassie will be doing much better by May but would welcome the chance to have Chels living close by again-we miss her!!
Ty has been assigned a temporary position on a platform as a prep-cook. We are praying the company he has been contracted out to will decide they want him full-time and hire him on. His work at ASRC has been hit and miss since the first of the year so he has been learning a lot about stretching his dollars. We get to see him about once every couple of weeks, he comes over for some home cooking. His favorite, of course, is sausage gravy and biscuits thanks to “Dig” at Dig’s Diner in Warsaw, Indiana. Not that I could even come close to making it as good as Dig, but I sure enjoy trying and seeing that wonderful smile from my Son when he gives me a big hug and says “Thanks Mom!
Through it all, GOD IS GOOD!
With all our Love,
The Harris’
