June 2009

It's been to long since I have last written so here we go....we are about 6 weeks post op and Niklas is doing great. to look back at the last six weeks I gotta say Niklas is quite a miracle. When we brought him home from the hospital he was able to sit up on his own and that was about it. We had to carry him to the bathroom and basically help him eat, get dressed, and do all his basic daily necessities. Within a week he was scooting around on the floor using his right leg and right arm. He was able to travel around the house this way and on a daily basis he was getting more feeling and movement back in his extremities. The second week home he actually got off of the couch and walked across the room. I know the surgeon said within time niklas would get most of the feeling and movement back in legs and arms....but two weeks after surgery walking?? I think he surprised everyone. To date he is walking, running, playing baseball, and swimming. We are going to physical therapy two times a week to rehab his left side ( arm, hand, and leg). It's almost like someone who has had a stroke...the therapists are doing exercises to strengthen his muscles on the left side. he is a trooper and a true hero and inspiration to me. He has been seizure free since May 16th which is a miracle in itself. He is set to start kindergarden in August at John Baldwin Elementary. He clearly has the will and the way to get better. He is a survivor....

surgery 1 & 2.....

wow its been a long week and a half......well let's see the first surgery took place on the 6th of May. It was 6 hours and they placed a tailor made grid on his brain which consisted of 92 electrodes. These electrodes were placed in many areas on the right side to track his seizure activity and to also record the exact location of his seizure activity. Luckily within the first two days after the grid was placed he had probably 12 seizures so they got lots of valuable information. Basically the rest of the week he was able to be somewhat comfortable with Adivan which stopped his seizures for the most part for the rest of the week. Then on Wedneday May 13th Niklas went in for his second surgery and it lasted 7 1/2 hours. They removed as much of the trouble spot as they could as it was close to his motor. The surgeon seemed very happy with how the surgery went. He said that hopefully niklas will be seizure free with medication these next 9 months and then we will try to wean him from his medications slowly to see if he can get off of them. Right now where we stand ( friday) is.....he is having some pain medication throughout the day and he is also on a steroid for 5 days to help with swelling and also to help with inflammation in his right arm and hand. He is only able to move his hand and arm a little bit right now and the doctors hope that within the next three days he gets a lot more movement. If he does then he could be released on tuesday of next week. If his movement does not return by the end of the week he will have to be transported to children's in oakland for the week to have inpatient physical therapy...which he will hate so I hope that is not the case. We are basically taking it day by day for right now. The scar he has is large but luckily with time his hair will grow back and hopefully it won't be very visiable at all.......thank you everyone for your love and support. this has been such a tough and emotional week. I for certain have never done something so hard in my life. This struggle has been going on for over two years. we are tired and at the end of our rope but for sure we will never give up hope. If this surgery for some reason does not prove to be a sucess which I don't believe will be the case then we will pursue other institutions.....I think we have a winner here though.

Thursday - The Day After

Yesterday Nik went down to the fourth floor and they performed the resection of the seizure focus surgery. We left him in the hands of Dr. Auguste and his "A" team at 9:00am and he returned to his bed at 7:30pm in the ICU. The doctor said it could not have gone any better and he actually found a pea sized mass in the exact area of the resection that he believes was the cause of this whole thing. He took it out as well and brought him back to us with great hope.
He is doing well. They took the breathing tube out, the feeding tube out and he just ate Trix for dinner. As long as he keeps drinking fluids regularly they won't need to hook up the IV again. He is receiving a steroid for the swelling in his brain with the hope that it won't be needed much longer. The recovery time for us here is all up to Niklas. Once he is on his feet and able to function "normal" we will be able to be discharged. Probable sometime early next week if all goes well.

We are still taking this one day at a time and are hopeful for Nik's future. All of the thoughts and prayers do not go unnoticed. Talk to you tomorrow.

Day 3

We just woke up on Saturday morning and Niklas had some water (2 cups) and some chocolate pudding. The first thing he has eaten since Tuesday. Last night was pretty good except for about an hour and a half in which he wanted daddy to pick him up and take him home. How do you explain what has happened and he can't get out of bed?
Friday was eventful. The neurologist came in and did a "mapping" of Nik's brain. It took about 3.5 hrs with good results. Nik has 96 sensors within the plate they placed on his brain. The doctor isolated and stimulated certain sensors to try and determine the function of specific parts of his brain. This mapping is done so they can plan out the second surgery when they plan on removing the lesion causing all of this. They know where the lesion is on the brain but were not sure as to the specific function that part of the brain has. After the mapping it was determined that the focal point of his seizures controls his left eye. There was concern that it was controlling his left hand. This is good news because on Wednesday they are going to remove the lesion. If it controlled his left hand and it was removed it would paralyze his hand for good.
We are very encouraged by this outcome.
Thank you all for your prayers and help. More later...

day 2

Day after surgery and we are doing well. Niklas is in and out of consciousness as he is on lots of pain medication and he is still coming off of the medication from the surgery yesturday. He is to be monitored for another 6 days ( the electrodes are on his brain and the chords come out of a little opening in his scalp) they then attach to the machine which monitors seizures. Our doctor has a video monitor at his house of Nik's room at the hospital-kinda crazy. we are hanging in for now.

one surgery down....

today Niklas had his first of two surgeries and it went well. There was a team of 10 in the operating room at least and he was so brave. We saw all of the doctors and assistants in the hallway when we said goodbye to Niklas before surgery and it was kind of surreal. I felt like we were on an episode of ER. He was in surgery for 6 hours. I took pictures of him after his procedure, unfortuately I forgot my plug to download them so I will do it tomorrow. He is doing ok.....his head is wrapped up and he looks like a mummy. His face and eyes are swollen and we are told it will be like that for a couple of days. he is resting now and he has actually had a few seizures in the last few hours because he did not get his usual meds. They have given him some medication to settle him down and make him comfortable. The doctors are going to monitor him for the next five days to make certain of the problem area before they go back in next week to remove the lesion. Brent and I are doing ok its gonna be a long two weeks......but its nothing compared to the two years he has been dealing with this.

Finally the day has arrived

Well its the night before Nik's big day....in a way it feels like the night before Christmas. Not that any of us are excited that he will be in surgery for 6 hours with doctors working on his brain, but I feel that this surgery is going to give Niklas the freedom and childhood he so deserves. for the past two years Niklas has had to deal with seizures that have been terrifying, annoying, and most of all debilitating. We know niklas has so many wonderful gifts to offer anyone he comes into contact with. He has a way with the ladies, he is extrememly bright, and his self-confidence is ridiculous. I can't wait to see what he has up his sleeve in the coming months. please say prayers for Niklas tonight and tomorrow. It's really in gods hands...although sometimes I like to think I'm god. I have no control over this situation whatsoever. I gotta trust him and the doctors that are going to be working on Niklas tomorrow.

sleeping angel......

I took this picture of Niklas because he is getting his hair cut tomorrow as short as he will allow our hair lady to cut it. Obviously the shorter the better for Wednesday. I'm going to miss his longer hair he looks so handsome. I especially love the fact that he let's me do whatever I want with it in the morning and I get to put my products in his hair. Peter would rather have nothing to do with products.....so we are less than three days away. Everything for the most part is in place as far as help and support. How do you really prepare for your child to have brain surgery, twice??? His first surgery on the 6th is 6 hours long. Arrival time is 6am and the surgery is set for 7am. It all has become so REAL about now.

Getting close only a week and a half out....brent and I are trying to stay present and focused but our anxiety is kind of overwhelming. Nik is doing good, our goal the next 10 days is to keep him healthy and comfortable. I can't believe our son is having brain surgery.

Soooo may 1st is our bloodwork/physical before surgery. May 5th is a last 15 minute MRI to do a quick brain scan......we are almost there. I have put many of you on a list for a friend who is creating a dinner list for people wanting to help. Also people may want to help in other ways and we are open to ANYTHING... Thank you ahead of time, there is NO way we would get through this without all of you......WOW what a long strange trip its been. I guess it's all a part of OUR story. It's unfolding as it should and our journey has just begun towards recovery and wellness. The beauty of all of this is that Niklas has no idea what is in store for him. God willing, he is in for a big surprise.

FINALLY..........

We finally got word that Niklas will have his surgery on May 6th at UCSF. He will be in the hospital for two weeks on the pediatric ward. He has to go through two surgeries...the first is on the 6th and the second will be on the 12th. Please say prayers for our family. we are looking forward to getting on with all of our lives and restoring the normalcy we have been without for two years. I think this surgery will enable Niklas to be happy, joyous and free. He has lived the past two years with a seizure disorder that has scared him to death, taken away from his childhood, and kept him from doing certain activities. He has had to endure many doctor visits as well as dozens of tests. He hasn't had a good restful night sleep in two years, either have we. I hope that this surgery brings him peace and freedom. As a family we have been through so much and our every bit of energy and will has been tested to the limit. We are so ready for this change and so is he. We feel he can only blossom from here......while he is in the hospital I will do daily updates. love to everyone for your support.

niklas at the park...

niklas, peter, and sam

niklas

Outstanding..........

WOW what a day. Brent and I went to UCSF today to meet with our surgeon and our neurologist. Today was definetly a good day.....FIRST we ruled out Rasmussens Encephalitus!!!!!!! Seriously I felt like I could breathe again. Google it and you'll see why. Also the doctors detected a lesion ( an abnormal piece of brain matter) with our most recent MRI done on the 19th of February. This was outstanding news because until now the doctors had been speculating where the seizures were coming from. This finding gives the surgeon such a better and more accurate picture of what needs to be done during the operation. Since the onset of his seizures Niklas has had significant weakness in his left leg and his left arm and hand. The surgeon talked today about having to be very careful because the lesion is close to his motor area. If in fact the lesion is to close to the area they will have to get out what they can and leave what is to close to his motor otherwise Nik could suffer paralysis in his left arm and hand. We certainly are not out of the woods by any means but it was a huge win today with the news of the lesion on the MRI. He will be in the hospital for two weeks at UCSF. He will be admitted sometime at the end of March. As soon as I know the date I will post it. It will be a two part surgery. The first part is the grid placement. Then after 6 days they go back in and remove the abnormal matter. I really believe that he will have a better chance at a normal life and so does the doctor. He will have to be on medication after the surgery for awhile and may have to stay on it for some time but the goal of the doctors is to get him seizure free first and then hopefully at some point off of meds. We haven't gone two days without a seizure in two years. I feel like we have been reliving a nightmare over and over again the past two years...its time to move on and move forward. I hope that this surgery will give Niklas freedom to be a kid again.

Tomorrow we go to UCSF for our 3 Tesla Mri......tuesday we meet with the surgeon and hopefully rule out Rassmusen Encephalitus. Then we can move forward with the surgery and scheduling.

Wating for the 19th of February

So we met with the surgeon a week ago Dr. Kurtis Aguste, and talked with him for an hour and a half about the surgery, what it entails, and what the outcome may be. I was really taken with the doctor in particular his bedside manner. Niklas seem to connect with him which was evident by his huge grin. The plan therefore is to wait until the 19th for our MRI at UCSF. The following Tuesday Feb. 24th we meet with the surgeon to discuss the results and hopefully rule out Rassmusens Encephalitus....If we are able to rule it out then we go ahead with surgery and pick a date. It all boils down to the surgeons availability and the operating room availability.

Yesturday Monday January 26th we meet with one of the doctors at children's hospital to discuss Niklas's surgery and what it involves. We came away from the meeting overwhelmed with so much information. Basically we are scheduled february 19th at UCSF for an MRI ( 3 TESLA) and then we meet with the head eptoligist at UCSF the following week. With all of the tests we have done over the past two years the doctors are still unable to totally locate the origin of his seizures. As the doctor said yesturday " his case is a complex case". Certainly not music to my ears......on the bright side they think they are pretty sure of where the seizures are starting ( they have to be certain with surgery) and if the MRI on the 19th doesn't reveal any new information or helpful information then we can decide to go ahead with the grid placement. Although invasive and quite a surgical process, the grid will provide much more information that is needed for the surgeons to properly remove the problem area. We also found out yesturday that the MRI will hopefully help to rule out an illness that doctors mentioned could be a possibility-Rasmussens Encephalitis. We have heard nothing until now of this illness but his case is complex and doctors are trying to rule out anything they can to make the diagnosis more accurate. The doctors did not say that they think he has this illness but they also didn't rule it out until they get the results back from the MRI. The way they would tell is if the right side of his brain was not growing the same as the left. They would compare this scan with one done 10 months ago. With this information yesturday I felt like somebody punched me in the stomach. If it is Rasmussens Encephalitis then surgery is not an option and medication is not effective. I guess they use auto-immune medications to contain the illness. I seriously can't focus on RE yet because we don't have enough information and we don't know if he even has it. We have chosen to focus on the MRI on the 19th and I am praying that RE is not detected. We have gotten through many obstacles in the past two years with Niklas, with numerous tests to rule out awful illnesses and diseases. One in particular we dodged was Tuberis Sclerosis which we had to wait two weeks for the results. Fortunately it was negative-thank god. So I guess patience is in order right now which is not my strength.......I have to believe a solution is waiting for us after the 19th. Our doctors want to be certain to rule out anything that may stand in our way. I commend them on being cautious and very thorough with our case. soo as of TODAY that is where we stand......

Where we stand right now is.......the doctors met last week at UCSF and all agreed on the area of the brain that is having seizures but want Niklas to have one test repeated because they do see some activity on the opposite side of the brain and they want to make sure that nothing is going on in that region.  They are pretty sure the activity starts on the right and then generalizes to the left.  So the right side would be operated on.   We are waiting to hear when his test is scheduled at UCSF. Hopefully very soon and we are meeting with one of the doctors next week to go over what to expect and the procedure itself with the first part of the surgery. We are just taking it one day at a time and we are all trying to stay in TODAY.  I picked up Nik's kindergarden packet yesturday to registar him for September and in the back of my head I question if he will be able and ready.  I realized this is out of my hands and I need to turn it over and not obsess about it.  The sooner we get going with the surgery the better in reference to our time table but I CLEARLY and QUICKLY realized that this is not on my time or Nik's time.  We have NO control over this situation.  

sooo we still haven't heard from our neurologist....we were suppose to hear from her yesturday so needless to say we are very frustrated and beginning to get angry. We did talk to one of the doctors that was present at the presentation/meeting Thursday and she said that he needs to have one more MRI to make certain of the area of the seizures. I so don't want to put him through yet another test but in the end we have come this far and if this is going to help facilitate a much better surgery than I guess we have to do it. We are now waiting to hear when the MRI is scheduled, hopefully ASAP. In the past we have had to wait weeks. Thank you to everyone for your kind words, love and support. Brent and I would not be this far in the process if it wasn't for family and friends. I will keep posting information as I get it.

Still waiting....haven't heard yet what the verdict is. Our neurologist said she would call us tonight or tomorrow by noon. We are trying to stay patient. I'm not sure when the doctors met today or how long the process took. As soon as we know anything I will post it. PLEASE SAY PRAYERS..........

Samantha and Niklas...best buddies.

Niklas wearing his monitor...such a good sport. He had to wear it for 24 hrs. The doctors wanted to track his heart throughout the day/night.

Wondering and Waiting.....

We talked to our neurologist on Thursday night to see if any new information was available. She told us that all of the doctors seem to agree that Niklas is in need of surgery ( good news ). They still need to meet on Thursday to present his case because EVERYONE involved needs to agree on the surgery. We won't know for sure about surgery until after the meeting, probably thursday night/friday morning. Also she said that it will be a two part surgery. The hardest part of epilepsy surgery is finding the origin of the seizures. All of the tests we have had done have helped tremendously to locate the specific area of nik's brain that is not functioning properly. They of course don't want to open him up and have to search around for the origin because that could take way to long and they may never find it. Sooo the first part of the surgery is putting electrodes directly on the part of the brain they think is the problem area. They will open him up put the electrodes on and then close him back up temporarily. He will have a few wires coming out of a tiny hole in his head that will be hooked up to a machine. Sounds graphic I know but it is reality. Hopefully he will be on pain meds so he won't know what is really going on. They will take him off of his epilepsy medication and then of course he will have seizures. Those seizures will show the doctors exactly where the seizures are starting. I believe this will be the hardest part of the surgery for Brent and I.......when I stayed with Niklas at Childrens Hospital in September for a two night stay they put 30 electrodes throughout his scalp and hooked him up to a machine to track seizure activity. They took him off of his meds during this time and the first night he had 20 seizures. It was awful to watch him go through this procedure. I felt as helpless as I have ever felt. I had to believe that we would get valuable information from this test and we did, thank god. If it is the only way to get the EXACT location of seizures then I am going to have to be at peace with the procedure. After they locate the area or areas they will then go back in and remove them the best they can. Our neurologists has told us that as young as he is the brain regenerates and other parts of the brain will help compensate for the areas that are gone. He definelty will need physical rehabilitation to strengthen his arms and legs. I am sure his coordination will also be off so we will work on that as well. We remain optimisstic that Niklas will benefit greatly from this surgery and the quality of his life will be dramatically BETTER.

La jolla visiting his cousins.....

September 2008 Children's Hospital Oakland

Always a good day at the beach......in Capitola.

This is exactly the smile we long for every day. This was a good day!

As many of you know Niklas has been struggling with epilepsy for the past 18 months. He has only responded a little to medication and to date we have tried 9 different kinds. His seizures are contained during the day but at night he is having seizures, every night. The seizures are disrupting his sleep, making him upset, and most of all scaring him to death. We have had so many tests over the past 18 months I can't even count on both hands, and we have come to a point that something drastic must happen to better the quality of his life. The entire process of finding the right anwser has taken a very long time and many different hospital visits ( Stanford, Children's Hospital of Oakland, and UCSF) BUT we think we have some sort of a solution. Niklas's case is being evaluated on January 15th at UCSF by a team of doctors who are going to determine the best coarse of action in treating Nik. Brent and I will have to then make a decision on the information we are given and weigh the pros/cons of the surgery. Please say a prayer for our family as we need all the help we can get. Thank you to all of the family and friends who have helped us through this very tough time.

January 2009

Happy New Year! And hopefully a happy one for our sweet Niklas.