I just thought I would share our exciting news. As most of you are aware we had booked a family vacation in the Spring to Maui and three days prior to leaving we had to cancel as Karter's condition changed thus not making him qualify for out of country medical insurance. We have been looking forward to taking the trip ever since he was through his surgery but just did not find the right time. We feel a vacation is well overdue with all that has been going on this past year.
With the possibility of further testing or treatments for Karter's Epilepsy and with his current stable condition, we felt we had this small window of opportunity to take this trip with him. He does qualify for insurance at this point so we thought "why not?".
We will be leaving on Monday September 10th and heading to Seattle to stay the night there. We then fly out on the 11th and return on the 25th. As you can imagine we are very excited. We have bathed this decision in prayer and have asked for guidance when making the plans. The other night I asked God to close doors and put obstacles in our pathway if we were not to go. All I can say is it has been smooth sailing since we decided to go. We booked everything and have felt such favor in all the bookings. We got an amazing price on our flights and our rental car and we are renting a condo there from someone we know, who is giving us an amazing deal too. So we feel blessed and anticipate a wonderful trip as a family. My parents will be joining us on the trip. They have never been to Maui so we will play tour guide to them, should be loads of fun!!!
We ask that you please pray for us that nothing would change in Karter's condition prior to leaving or while on vacation. We have asked the Lord's protection and favor for this trip and we ask that you just keep us in your thoughts and prayers as well.
We will update the blog as much as we can while we are away, but if we don't you know we just got too busy having fun! :-)
If you read our family BLOG as well, you will see this post there as well, we just wanted to share it with everyone, so excuse our redundancy.
Tuesday, August 28, 2007
Tuesday, August 21, 2007
The call from Children's Hospital
I got a call from Children's Hospital yesterday. It was from the Neurology department nurse Kelly. She had to called to both check up on how Karter was doing and also to talk a bit about his EEG a week back. She did not have the actual report yet however the EEG department had called her and so she knew the gist of what had showed on the EEG. There was no hypsarhythmia on the scan, so for that we are most thankful. If you recall that is what shows up on EEG when Karter is having Infantile Spasms. Also in the hour that Karter had the EEG there were no seizures both seen and not seen to the naked eye. So as far as the EEG department was concerned this EEG showed improvement from the last. Of course Kelly had to be the conservative one and let us know that it was only one hour out of the day and just becasue we didn't see anything that doesn't mean it is not happening.
I asked what the next step was then. She said that we wait for the MRI appointment and see what the MRI shows. I asked again why we were doing the MRI. She said that they want to view his brain post surgery and look at the pathways that have been created etc. So it looks like sometime in September we will have an appointment for that.
The "surgery" word was floated again on the phone. Kelly felt that Dr.Conoly was leaning towards the option of more surgery as a possibility. If his seizures continue and his development doesn't have a major pick up, it looks like we could be facing that road again. This time however surgery is more invasive. Karter had a brain resection, which basically means they removed a portion of the brain that appeared to be abnormal, thus causing seizures. This time if they did surgery it looks like they would remove the entire front right lobe, they call it a hemispherectomy. Obviously, God created the brain whole for a purpose, so losing a portion of it will have its ramifications for Karter. The most major, some weakness on the left side seen in the hand and the leg. He would still walk, but could limp and he could still use his hand but it would be weaker and he may not have the same control as on the right side. Also the other implication for him would be some loss of periferal vision in the left eye. This is something that could effect his changes at a drivers license later in life.
Obviously, the idea of more sugery is more than I can even imagine. Also, the idea that we may have more losses in motor development and sight are pretty difficult. But I have to stand on the fact that God has it all figured out and He already knows that outcome for Karter, it is done as far as God is concerned. My job is to take it one day at a time and not waste time and energy worrying about the things that may be, but rather focus on what is.
We still pray and believe for Karter's healing. I know I serve a God that cannot only make the abnormal brain normal but also restore what has been lost thus far. That is my constant prayer, that Karter would be made whole and new. Please pray that we would not hear the negative when we speak with the doctors but rather let it roll off our back and remain able to see the best case scenario, trusting and believing that we are in the best hands of our Father. Also, pray that we see a significant pick up in Karter's development. I am thrilled with the progress this far but we need to see some major milestones met so that we don't have to face the decision of more surgery. Our God is able to do far beyond what we can see or ever imagine!
I asked what the next step was then. She said that we wait for the MRI appointment and see what the MRI shows. I asked again why we were doing the MRI. She said that they want to view his brain post surgery and look at the pathways that have been created etc. So it looks like sometime in September we will have an appointment for that.
The "surgery" word was floated again on the phone. Kelly felt that Dr.Conoly was leaning towards the option of more surgery as a possibility. If his seizures continue and his development doesn't have a major pick up, it looks like we could be facing that road again. This time however surgery is more invasive. Karter had a brain resection, which basically means they removed a portion of the brain that appeared to be abnormal, thus causing seizures. This time if they did surgery it looks like they would remove the entire front right lobe, they call it a hemispherectomy. Obviously, God created the brain whole for a purpose, so losing a portion of it will have its ramifications for Karter. The most major, some weakness on the left side seen in the hand and the leg. He would still walk, but could limp and he could still use his hand but it would be weaker and he may not have the same control as on the right side. Also the other implication for him would be some loss of periferal vision in the left eye. This is something that could effect his changes at a drivers license later in life.
Obviously, the idea of more sugery is more than I can even imagine. Also, the idea that we may have more losses in motor development and sight are pretty difficult. But I have to stand on the fact that God has it all figured out and He already knows that outcome for Karter, it is done as far as God is concerned. My job is to take it one day at a time and not waste time and energy worrying about the things that may be, but rather focus on what is.
We still pray and believe for Karter's healing. I know I serve a God that cannot only make the abnormal brain normal but also restore what has been lost thus far. That is my constant prayer, that Karter would be made whole and new. Please pray that we would not hear the negative when we speak with the doctors but rather let it roll off our back and remain able to see the best case scenario, trusting and believing that we are in the best hands of our Father. Also, pray that we see a significant pick up in Karter's development. I am thrilled with the progress this far but we need to see some major milestones met so that we don't have to face the decision of more surgery. Our God is able to do far beyond what we can see or ever imagine!
Saturday, August 18, 2007
EEG pictures
I thought you may be interested in seeing some pictures of Karter when he had his EEG. This is after all the wires are on. In one of the pictures you can see he was not too happy about the whole thing but all in all he did fine.
We still have not heard anything from Children's Hospital. i will keep you updated when I hear anything.
This week Karter has been moving to his side a lot more. We have come to realize that Karter is fully capable of rolling over but he hates being on his tummy so much that he really has no reason to roll from his back to his tummy. Our prayer for him this week is that he would start to enjoy that time on his tummy more and have the desire to get there by rolling. We are spending as much time with him as we can making him lie on his tummy and playing with him.
We still have not heard anything from Children's Hospital. i will keep you updated when I hear anything.
This week Karter has been moving to his side a lot more. We have come to realize that Karter is fully capable of rolling over but he hates being on his tummy so much that he really has no reason to roll from his back to his tummy. Our prayer for him this week is that he would start to enjoy that time on his tummy more and have the desire to get there by rolling. We are spending as much time with him as we can making him lie on his tummy and playing with him.
Sunday, August 12, 2007
And a light went on...
I wanted to take a moment a share with you some thoughts that came to me as I spent some time with God before finally drifting off to sleep last night. If you are reading this blog, you have walked with us through this tough journey and so I feel like I want to share this with you.
This week I had someone share with me that "strength" is a spirit in which we can call on. Much like the authority we have over darkness we have the authority to call on the spirit of strength when we need it. I have called on that spirit many times this week both for Karter and for myself. I really could not see any possible way to continue on the journey. In my mind I could not entertain the idea that it may not be over. But in saying those words "Lord, I call upon your spirit of strength" I realized that I was one again allowing God to give me what I needed when I needed it, in a supernatural way. What an amazing gift that was to be able to see it in that light, there was a peace and such a release that I felt when I could grasp onto that concept.
As I lay in bed last night I was thinking about how God has been so faithful to us through this time. That is not a new reality for me but I was so thankful for that. I was thinking of all the things that Karter has come through, overcome and where he was TODAY...I felt blessed. I then thought about where I came from in my faith and walk with God. That is what got me thinking about the idea or phrase I am sure many of us have spoken "God allowed me to go through this to teach me______".
I starting pondering and felt like I had a real shift in my thinking. I don't truly believe that God sat on His throne and thought, I am going to allow Karter to have Epilepsy so that Charlene could learn _____ and Kurtis could learn____ etc, etc. No, He doesn't work that way. Rather I look at it like this...Karter's Epilepsy brought us to a place of such vulnerability and desperation for God that it revealed the things that, already there inside of us, were magnified and thus refined as we sought God on Karter's behalf. As we prayed daily for Karter and listened, those things in our own lives were magnified by our ability to be humbled and just wait on Him. Thus we learned and were changed in many areas of our lives; character, faith, beliefs etc. That wasn't because God sat there and said "It is time for them to learn ____". No, Karter's situation was just catalyst for the change that was already brewing inside us. We could have chosen to give up completely when everything started last fall and say "I cannot hear from a God who would allow this to happen to my baby boy" thus turning our hearts and minds completely away from Him, learning nothing and allowing no change. But rather we allowed the beautiful Spirit of God to permeate every part of ourselves and we listened and depended on Him. That brought about such peace and reassurance that we would have the strength to make it through and we would be victorious in the end!
I don't know how long this road will be, my human hope is that it is over yesterday :-) But no matter what, I would not have done it any other way than with God at the control center of this roller coaster. All of us will face things that are difficult or we will watch others walk difficulties and say "I can't do that". But know this, you will do it because with God on your side, guiding, protecting and providing you with strength, you have no other option but to be successful.
Today Pastor Harvey touched on the idea that community is such a necessity in our lives. I echo those words loudly to you. Without our community we would have not been able to stand as strong as we have and face this storm with as much strength as we have. Where two or more are gathered, God will be there...how blessed we feel to have hundred's gather with us on Karter's behalf!
This week I had someone share with me that "strength" is a spirit in which we can call on. Much like the authority we have over darkness we have the authority to call on the spirit of strength when we need it. I have called on that spirit many times this week both for Karter and for myself. I really could not see any possible way to continue on the journey. In my mind I could not entertain the idea that it may not be over. But in saying those words "Lord, I call upon your spirit of strength" I realized that I was one again allowing God to give me what I needed when I needed it, in a supernatural way. What an amazing gift that was to be able to see it in that light, there was a peace and such a release that I felt when I could grasp onto that concept.
As I lay in bed last night I was thinking about how God has been so faithful to us through this time. That is not a new reality for me but I was so thankful for that. I was thinking of all the things that Karter has come through, overcome and where he was TODAY...I felt blessed. I then thought about where I came from in my faith and walk with God. That is what got me thinking about the idea or phrase I am sure many of us have spoken "God allowed me to go through this to teach me______".
I starting pondering and felt like I had a real shift in my thinking. I don't truly believe that God sat on His throne and thought, I am going to allow Karter to have Epilepsy so that Charlene could learn _____ and Kurtis could learn____ etc, etc. No, He doesn't work that way. Rather I look at it like this...Karter's Epilepsy brought us to a place of such vulnerability and desperation for God that it revealed the things that, already there inside of us, were magnified and thus refined as we sought God on Karter's behalf. As we prayed daily for Karter and listened, those things in our own lives were magnified by our ability to be humbled and just wait on Him. Thus we learned and were changed in many areas of our lives; character, faith, beliefs etc. That wasn't because God sat there and said "It is time for them to learn ____". No, Karter's situation was just catalyst for the change that was already brewing inside us. We could have chosen to give up completely when everything started last fall and say "I cannot hear from a God who would allow this to happen to my baby boy" thus turning our hearts and minds completely away from Him, learning nothing and allowing no change. But rather we allowed the beautiful Spirit of God to permeate every part of ourselves and we listened and depended on Him. That brought about such peace and reassurance that we would have the strength to make it through and we would be victorious in the end!
I don't know how long this road will be, my human hope is that it is over yesterday :-) But no matter what, I would not have done it any other way than with God at the control center of this roller coaster. All of us will face things that are difficult or we will watch others walk difficulties and say "I can't do that". But know this, you will do it because with God on your side, guiding, protecting and providing you with strength, you have no other option but to be successful.
Today Pastor Harvey touched on the idea that community is such a necessity in our lives. I echo those words loudly to you. Without our community we would have not been able to stand as strong as we have and face this storm with as much strength as we have. Where two or more are gathered, God will be there...how blessed we feel to have hundred's gather with us on Karter's behalf!
Thursday, August 9, 2007
Today's EEG
We are back from the EEG, the appointment went fast and very well. Karter fell asleep 5 minutes into the test, so it was done within one hour PLT!
As for results...basically, we were allowed to go home without seeing the Neurologist today. That is really good news. Had something changed drastically on his EEG, we would have needed to see the Doctor. So at this point no news was good news.
We will get the actual results over the next few days. We suspect that an appointment will be made for an overnight stay in the hospital so they can do a 24 hour EEG. An appointment request has been put in for another MRI, we should hear about that date soon.
So thus far, we are feeling ok about things. On a side note, Karter had his Occupation Therapy feeding consultation yesterday. The OT was very please and surprises with how well he was doing. She assumed since he was at a 4 month level with his motor skills, his feeding skills would be there as well. Not the case, he is about a 10 or 11 month level with feeding and the only thing that is hindering him with moving further is his inability to pick up food and place it in his own mouth. She gave us a few things to work on, but overall, was a real encouragement. Today the physiotherapist visited and was equally as encouraging. I had shared with her about the appointment last week and where they felt Karter should be and that they felt progress was a bit slow. She reminded me where he was before surgery and felt that their expectations were unrealistic especially since they do not see him in his surroundings. She felt that Karter has made amazing progress since surgery and is doing very well. Those word were such a treasure for us this week.
We will keep you posted when we hear any results.
As for results...basically, we were allowed to go home without seeing the Neurologist today. That is really good news. Had something changed drastically on his EEG, we would have needed to see the Doctor. So at this point no news was good news.
We will get the actual results over the next few days. We suspect that an appointment will be made for an overnight stay in the hospital so they can do a 24 hour EEG. An appointment request has been put in for another MRI, we should hear about that date soon.
So thus far, we are feeling ok about things. On a side note, Karter had his Occupation Therapy feeding consultation yesterday. The OT was very please and surprises with how well he was doing. She assumed since he was at a 4 month level with his motor skills, his feeding skills would be there as well. Not the case, he is about a 10 or 11 month level with feeding and the only thing that is hindering him with moving further is his inability to pick up food and place it in his own mouth. She gave us a few things to work on, but overall, was a real encouragement. Today the physiotherapist visited and was equally as encouraging. I had shared with her about the appointment last week and where they felt Karter should be and that they felt progress was a bit slow. She reminded me where he was before surgery and felt that their expectations were unrealistic especially since they do not see him in his surroundings. She felt that Karter has made amazing progress since surgery and is doing very well. Those word were such a treasure for us this week.
We will keep you posted when we hear any results.
Wednesday, August 8, 2007
Thursday's EEG
I just wanted to let you know that I will be taking Karter into Children's Hospital for an EEG at 1pm on Thursday afternoon. Also, in the past few days Karter has had four seizures. Please pray for us for strength to hear whatever news from the doctors in response to his EEG. Also, pray that the seizures are exactly what they told us to expect at the beginning..."a side effect from surgery". Our hope is that Karter's body is "just repairing itself" and that is why we are seeing these breakthrough seizures. Our prayer and hope is still that Karter has received healing in his body and that we are moving forward from this point. If that is not the case we would really appreciate your continued prayers for strength to deal with whatever comes our way each new day.
I will post something as soon as we get the EEG results, that will probably be sometime on Friday.
I will post something as soon as we get the EEG results, that will probably be sometime on Friday.
Saturday, August 4, 2007
Wednesday's "Dis"-Appointment at Children's
Kurt and I took Karter to his first post surgery appointment on Wednesday afternoon. We were scheduled to meet with Karter's Neurosurgeon and Neurologist for a three month follow up visit. It was more like a two month check up as they are on holidays over the next while. Finally, after waiting over an hour we see Dr. Steinbok and Connoly.
If I am to be honest, I would tell you that we were so excited for this appointment because we felt that for the first time in almost a year we had something to celebrate...Karter's progress! We have never been to Children's Hospital on a positive note, rather every time we go it is bad news or for a negative reason. We are so happy with the progress we had made this far and we wanted them to see that too. Karter has had two incidents that had seizure characteristics since surgery, however as I have mentioned before, they told us that was normal in the first three months.
If I was to sum up the appointment in a nutshell, Dr.Connoly, the neurologist was hoping that Karter would have progressed a bit further already. She had hoped that he would be rolling over completely both ways and that he would be reaching and grabbing for objects by now. Basically, she wants to do another EEG to make sure that there is no seizure activity that we are not seeing. If they do not find anything on that EEG they may take Karter into hospital overnight and do a 24 hour EEG. If nothing shows up there, we move forward. If they do find something on the EEG that is abnormal they will do another MRI and take another look at the area of his brain. If this shows more abnormality that causes seizures, they do more surgery. I am not sure if we told you this, but right before they did surgery, they told us that there were other areas that looked suspiciously abnormal however, they could not conclude with the clinical testing that those areas were causing the seizures, so they left them and were Conservative with their removal in surgery. The thought was that you can always take more but you cannot ever put back what you have taken. The area of concern extends down into his motor cortex and so they didn't want to not touch that area if the didn't need to.
So to sum it up for us...it was a bit of a blow. We really believed that we had closed the door to the worst of Karter's illness. It is still extremely possible that we have however, we were not prepared to have that news the other day.
So where does that leave us? Well, once again we wait. We should hear about the EEG appointment on Tuesday, I think it will be within the next week or so. Then we wait on those results. Depending on the results, we then choose our course of action.
If I am to be honest, I told Kurt the night before the appointment that my worst fear was that he was not going to be as far in development as the had hoped and that they would deem surgery unsuccessful. In our minds no matter what Karter is doing far better today than any day before surgery, so thus far, we are successful. However, even though I spoke those fearful words to Kurt, my heart was not prepared nor did I believe that they would be true, so I am still reeling from that. This I think has been one of the hardest parts of the journey for me. I do not want to sit and accept defeat, but I do feel like mustering up the strength to be strong is not coming as easy as it has in the past.
So once again we ask you to pray for us. This roller coaster ride is taking a huge toll on us and honestly we want off. More than ever before, we need your prayers for strength. Strength for the day to day things like caring for Paige and keeping life "normal" for her. Strength to keep up with Karter's schedule in way of therapy and doctors appointments. Strength and peace to handle all the emotions that surround this. Ultimately, we need prayer for healing. I don't want to do this anymore, it needs to be finished so that we can move on with our lives.
One last note. Would you please pray for us for wisdom. Our plan was for me to go "back to work" so to speak in September. Things are really tight without the extra income I make doing daycare here at home. Kurt and I have been wrestling with what to do in the fall. It is hard with all Karter's appointments to fit "a job" in, however we are praying for something that just works with our schedule. Now this new development makes the decision of "what to do?" more complicated. In March I stopped doing daycare because the the erratic pace of our lives at that point. The not knowing what was happening each week was too much. And to have to worry about finding care for not only Paige, but two others if I was in the hospital with Karter, was too much of a stress on me and everyone else here. So please pray for wisdom and we make the decisions regrading our finance etc. Also, pray that the right "job" would come along. Something that I could do from my computer at home 10-15 hours a week even could work, whatever, please just join with us in prayer as we make these tough choices of what to do.
If I am to be honest, I would tell you that we were so excited for this appointment because we felt that for the first time in almost a year we had something to celebrate...Karter's progress! We have never been to Children's Hospital on a positive note, rather every time we go it is bad news or for a negative reason. We are so happy with the progress we had made this far and we wanted them to see that too. Karter has had two incidents that had seizure characteristics since surgery, however as I have mentioned before, they told us that was normal in the first three months.
If I was to sum up the appointment in a nutshell, Dr.Connoly, the neurologist was hoping that Karter would have progressed a bit further already. She had hoped that he would be rolling over completely both ways and that he would be reaching and grabbing for objects by now. Basically, she wants to do another EEG to make sure that there is no seizure activity that we are not seeing. If they do not find anything on that EEG they may take Karter into hospital overnight and do a 24 hour EEG. If nothing shows up there, we move forward. If they do find something on the EEG that is abnormal they will do another MRI and take another look at the area of his brain. If this shows more abnormality that causes seizures, they do more surgery. I am not sure if we told you this, but right before they did surgery, they told us that there were other areas that looked suspiciously abnormal however, they could not conclude with the clinical testing that those areas were causing the seizures, so they left them and were Conservative with their removal in surgery. The thought was that you can always take more but you cannot ever put back what you have taken. The area of concern extends down into his motor cortex and so they didn't want to not touch that area if the didn't need to.
So to sum it up for us...it was a bit of a blow. We really believed that we had closed the door to the worst of Karter's illness. It is still extremely possible that we have however, we were not prepared to have that news the other day.
So where does that leave us? Well, once again we wait. We should hear about the EEG appointment on Tuesday, I think it will be within the next week or so. Then we wait on those results. Depending on the results, we then choose our course of action.
If I am to be honest, I told Kurt the night before the appointment that my worst fear was that he was not going to be as far in development as the had hoped and that they would deem surgery unsuccessful. In our minds no matter what Karter is doing far better today than any day before surgery, so thus far, we are successful. However, even though I spoke those fearful words to Kurt, my heart was not prepared nor did I believe that they would be true, so I am still reeling from that. This I think has been one of the hardest parts of the journey for me. I do not want to sit and accept defeat, but I do feel like mustering up the strength to be strong is not coming as easy as it has in the past.
So once again we ask you to pray for us. This roller coaster ride is taking a huge toll on us and honestly we want off. More than ever before, we need your prayers for strength. Strength for the day to day things like caring for Paige and keeping life "normal" for her. Strength to keep up with Karter's schedule in way of therapy and doctors appointments. Strength and peace to handle all the emotions that surround this. Ultimately, we need prayer for healing. I don't want to do this anymore, it needs to be finished so that we can move on with our lives.
One last note. Would you please pray for us for wisdom. Our plan was for me to go "back to work" so to speak in September. Things are really tight without the extra income I make doing daycare here at home. Kurt and I have been wrestling with what to do in the fall. It is hard with all Karter's appointments to fit "a job" in, however we are praying for something that just works with our schedule. Now this new development makes the decision of "what to do?" more complicated. In March I stopped doing daycare because the the erratic pace of our lives at that point. The not knowing what was happening each week was too much. And to have to worry about finding care for not only Paige, but two others if I was in the hospital with Karter, was too much of a stress on me and everyone else here. So please pray for wisdom and we make the decisions regrading our finance etc. Also, pray that the right "job" would come along. Something that I could do from my computer at home 10-15 hours a week even could work, whatever, please just join with us in prayer as we make these tough choices of what to do.
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