01/27/2010
Got the records from Caleb's Dr. for Hopkins!! Will be fedexing his package tomorrow with lots of prayer!! Lets get this show on the road!!

01/24/2010
If you'd like more information on the Ketogenic Diet please visit Charliefoundation.org There is a link on the home page!!

01/07/2010
Caleb is Johns Hopkins Bound!!!! We finally heard from Johns Hopkins and Caleb is scheduled for inpatient admission 3/1/2010 - 3/4/2010. We will begin the Ketogenic diet for seizures there. We will spend time between now and then doing lots of paperwork and getting Caleb's medical records and history to Johns Hopkins. We'll also have lab work to do. We are nervous and excited! The chance to get Caleb in front of Dr.'s at Johns Hopkins is something we've wanted for 4 1/2 years. Caleb continues to struggle daily with stamina and has multiple seizures a day, so this is a blessing! As always, we thank you for your prayers, love, and support. I will keep you posted on our progress and trip! Tracie Thomas (Caleb's Mom)

11/25/09
I wanted to provide an update because we had Caleb’s neurology appt. Monday, 11/23/09 and received the results of the 24 hr EEG he had on 11/11/09. We did not get good news. To sum it up the Dr. said Caleb’s brain was NEVER normal during the 24 hr period. He had slowing and spikes on both sides, clinical seizures were present on both sides, he had a couple that started in the right frontal lobe and spread to the entire right hemisphere, he had a LONG seizure from the left side that had no clinical changes, I asked what that meant and he explained Caleb’s brain was seizing but we would never know it (no outward signs). We had suspected he was having SOME of the non clinical seizures but did not expect to hear that he had NO normal period in 24 hours. We are devastated by this news! The Dr. told us to hang in there and said we were doing a good job!! Some days I wonder, but we certainly are doing the best we can. We are keeping the Faith and we covet your prayers and support. I'm ready for him to get his miracle! Happy Thanksgiving and don't forget to count your blessings!

11/9/09
Caleb continues to have 1-3 tonic clonic seizures per day. Today we FINALLY received the new medication from the United Kingdom. It's called Clobazam (Clo-ba-zam). We will start it Friday evening so we can monitor him for a couple of days before he has to go to school. Initially, he will take it in the evening only because it can make him tired. We will increase as needed and tolerated. We go this Wednesday, 11/11/2009 for his 24 hour EEG. We have to be at the hospital at 7a.m. and they will hook him up and give him a backpack to wear that will record his brain activity for the entire day. We'll be able to come home and are supposed to take him through a typical day as much as possible. We go back Thursday at 7a.m. for removal. We will see a behavioral psychologist next Monday, 11/16/09 to hopefully provide us some guidance on some of his behaviors. Caleb's big brother, Austin, continues to be GREAT!! He will be trying out for basketball next week & is very excited. We continue to keep the faith and we covet your prayers during this journey! Tracie Thomas (Caleb's mom)

8/24/09
Caleb had a neurology appt. this a.m. The Dr. is great, he never rushes us..we spent 45 minutes w/him. We were able to get 3 videos of Caleb having seizures this past weekend. Dr. said they were helpful but I’m not sure how. Just mainly confirms that we have a lot of work to do. The type of seizure he is having are called complex partial seizures. For those of you that don’t know, Caleb is having these 1 – 3 times per day. We started our appt. with the Dr. mentioning Felbatal AGAIN, which is the drug w/the possible fatal side effect AND requires lab work every other day for at least the 1st month!!!! For those 2 reasons we have said NO to the drug to date. He reiterated that we are running out of drug options. There are some new drugs in the works but nothing in the near future. I asked if we could attempt the Depakote, Phenobarb, Trileptal mix again, since we had our best control (seizures every 7 – 10 days) on that combo! He agreed we could, but said we still didn’t have control so we’ll have to step it up a notch. Stepping it up a notch means possibly trying the diet (modified atkins/ketogenic) diet in combination w/the meds. Caleb would only be allowed 15g of carbs per day initially and then only 10!!! It’s high fat…low carb. That will be a challenge!! That kid loves carbs (like his mama). Another option for stepping it up could be adding the drug Clobazam. Clobazam is not approved in the U.S but is used in the UK , Canada , etc. It is similar to valium w/less side effects. Caleb would take up to 10mg daily. We would have to get a prescription and order it online f/Canada. Caleb was really good during the appointment. Being his sweet self and drawing pictures for everyone. The current plan of action: 1. Increase his Trileptal from 1 ½ pills (300mg tablets) twice a day to 1 1/2 in the a.m. and 2 in the p.m. We will do this for 10 days and if no improvement…on to #2. If this works then we’ll sit tight!! 2. Add Depakote if increase in Trileptal doesn’t work. We will wean him off the Vimpat at the same time we’re adding the Depakote. 3. We will get depakote, phenobarb, and trileptal blood levels before the next appt. 4. We will do our homework on the Clobazam and the diet so we can discuss more next month. We are still researching getting Caleb a special needs stroller. We want something easy to fold but obviously will have to be able to hold his weight. We are also looking into getting Caleb a non suffocating pillow (sold in the U.K) and a seizure/movement monitor, since he’s having seizures in his sleep. The list keeps growing!!! As always - thanks for all your support and prayers! We couldn't do this w/out all the love! ((HUGS)) to all. Tracie

6/5/09
Today is the 4 year anniversary of Caleb’s illness. Today we reflect on the last 4 years and while it has been more than we ever imagined, we count our blessings. We are thankful that we still have him, for the progress he has made, for the lives he has touched, for his child like faith that helps to keep us grounded, for all his hugs, kisses, and smiles, for the closeness of our family, for the unselfishness and patience of his big brother –Austin, for all the love and support we get from our friends and family. PEACE! Tracie

6/4/09
We're pretty sure Caleb has a virus! He had a bad seizure Tuesday night at 7:00p.m. (we actually had the paramedics here because of his labored breathing). At 9:00p.m. he had a fever of 102.3. He had a fever all day yesterday and another bad seizure yesterday afternoon. He’s had diarrhea since last night. His neurologist has us giving him 4mg of valium every 4 hours while he has a fever to try to minimize the seizures. He started another new medication (Vimpat) Tuesday night but we won’t know if it’s working until he gets over this illness. We are all exhausted! Tracie

5/21/09
All, I wanted to let you know that Caleb has had a tough 6 days! He’s had some really good moments but he’s having even more increased seizures. He had 3 seizures Friday, 1 Saturday, 1 Sunday, 1 Monday, 2 Tuesday, 1 Wednesday, and 1 so far today. Tracie

4/10/09
It's Good Friday and I'm reminded of what this weekend means to us. It is the reason for our hope!! Without Easter and Christs resurrection there would be no hope but because of it we have hope eternal! We continue to believe and ask for Caleb's total healing. This weekend reminds us that if Jesus can overcome the grave and death then he can certainly provide healing to Caleb! We take comfort and draw strength from that. We are looking forward to this Easter weekend - Church, egg hunts, brunch w/the family, etc. Happy Easter to all of you!! Tracie (and the gang)

3/31/2009
I met with Caleb’s Dr. this a.m. Unfortunately, there isn’t a lot of good news to share. He said that Caleb is having Frontal Lobe seizures (which he had told us before). The EEG showed a lot of abnormal activity bilaterally (both sides). He said Frontal Lobe Epilepsy is the worst kind and the hardest to control! He is changing his meds again. He told me point blank that he wished this was all an exact science but a lot of it is art (guessing and trial). The new medication (Banzel) that we were so hopeful for is not working so he’s pulling him off of it, slowly. He had just attended a meeting on Banzel and the feedback was low tolerance and that sometimes it would work initially and then lose it’s effectiveness. He wants to try Zonegran. There is another new one called Vimpat waiting to be approved by the FDA. Outside of the medications he said there is VNS (Vagus Nerve Stimulation), but he said they haven’t been extremely successful and isn’t typically helpful for partial seizures (which Caleb has) but it’s an option down the road for some possible improvement. There is also a possibility of DBS (Deep Brain Stimulation) but it hasn’t been tested on adults w/epilepsy yet so it’ll be awhile before it could even be an option for Caleb. The Ketogenic diet or a modified Atkins diet are things we can try but again he’s not real optimistic it will help!! He also believes a lot of Caleb’s behaviors (which he witnessed a couple of meltdowns & lack of responsiveness, and the roller coaster of emotions he sometimes has) are likely him having partial seizures. He believes he could be having many partial and silent seizures a day. Silent seizures are very common with Frontal Lobe Epilepsy. We are only tracking/reporting the bad ones (the ones that spread and become generalized… causing the dropping, loss of consciousness, convulsing/twitching, etc). We have to keep the Faith!!

3/29/2009
We attended the 3rd annual National Walk for Epilepsy in Washington, D.C. yesterday (3/28/09). Team SRCH4Caleb has made it every year! Each year our Team and our fundraising has grown! This year Team SRCH4Caleb raised $3,070!! That is $993 more than we raised in 2008. Thanks to everyone that helped make that possible. We are that much closer to finding a cure for Epilepsy. The weather was rainy but our spirits were good and we were on a mission to raise awareness! Our team consisted of Myself, Dave, Austin, Caleb, Memaw, Pap, Memommy, Grandaddy, and our friend Bill. It was muddy but it was inspiring to see all the people that turned out (despite the weather)! The survivors received purple t-shirts so you would know who they were. As always we are reminded of our blessings. There were many children much worse than Caleb. We also found hope in the survivors that live a fairly normal life and have seizure control. We are so grateful to everyone for their continued prayers, love, and financial support of Caleb and this cause so dear to us. We are reminded each year when we fundraise for this walk just how many people care about Caleb and our family. It is humbling to say the least! My new favorite quote is "Instead of complaining that the rosebush has thorns, be happy the thornbush has roses". Tracie

Update 2/25/2009
I wanted to let you know that Caleb had a bad seizure tonight approx. 5:45p.m. There was no normal warning, like him complaining of a headache, stomach ache, or anything. He and Austin were playing upstairs and Austin said all of a sudden he stared off. He asked Caleb if he was o.k. and initially Caleb shook his head yes and then after a period he stopped answering and Austin came to get us (we were fixing dinner downstairs). When Dave and I got upstairs he was already turning color and his head and eyes were locked to the right. His hand was curled and rigid and he had wet himself! He hasn’t lost control of his bladder or bowel since his very first seizure!!! We gave him the emergency meds. We’re not sure how long it was but at least 3 hard minutes!!! I will be calling the Dr. in the a.m. but I’m guessing we’ll have to increase the new med earlier than planned. We have high hopes for this new med so we’re hoping this is part of the transition period and he’ll level out!! He had a seizure Monday evening and then tonight, so it’s been a tough week!! He did wake up and eat dinner and was in good spirits before bed. Austin read him 2 books before he went to sleep. They are both amazing!

Update 1/15/2009
Caleb was admitted to the hospital 1/13/09 because he had 9 seizures in less than 24 hours. He had an EEG and had 2 seizures during it. His seizures are coming from both sides of the brain so he will not be a candidate for brain surgery. We are thankful we were able to determine that without going through the surgical evaluation. Basically, the Dr.’s will continue to look for a medication combination that works.

Update 12/30/2008
With 2008 coming to an end I wanted to give you an update on Caleb and the family.

We saw Caleb’s neurologist today and it was a very informative visit. For those that don’t know, Caleb’s been having more frequent, more intense, and longer seizures since October. We have been working closely with the neurologist and making medication changes almost weekly. The EEG he had in early December was abnormal with extra electricity/activity, after having 2 previous “normal” EEG’s. During December we were able to record 3 of Caleb’s seizures and provide them to the Dr. They have proven to be very helpful. Below is the breakdown of what we learned today.

1. Caleb is having partial seizures (a feeling, movement, etc.. usually consciousness is maintained) that sometimes spreads causing generalized seizures (unconsciousness, convulsions, foaming at the mouth, etc.)
2. Caleb’s complaint of light & sound bothering him, feeling sick, headaches, rigid hands, etc. can all be partial seizures. They can be mistaken for behavioral problems and can be very hard to identify and track. They typically last a short period.
3. The Dr. believes Caleb’s seizures are coming from the frontal lobe. He wants to do a 3T MRI to get a better look at his brain and try to indentify the problem area. We hope to get this scheduled in the next several weeks.
4. We are making more changes in Caleb’s medications over the next 3 weeks. Adding a new medication called Primidone, which is a form of phenobarbial. We will eliminate the Lamictal because it did not work and also the Phenobarbital because it will be replaces with the Primidone.
5. If the seizures are from the frontal lobe then the Dr. said surgery is usually more complicated and not real successful.
6. The ketogenic diet will not work for his type of seizures.

We continue to count our blessings daily! We are thankful for the Dr. He has been great. He is very patient with all my questions and never rushes us. I think he spent about 45 minutes with us today. While he continues with his plan we will continue to pray and believe for Caleb’s total healing! We know God has a plan and we continue to take one day at a time with our eyes focused above. We are not perfect but we strive to be better each day.

Austin is doing well in school, making the honor roll. He is doing the televised school news each day and has really enjoyed that. He even has a little girlfriend! He took up surfing this summer and got a surfboard for his birthday in October so the upcoming months should be filled with excitement. He continues to be a GREAT big brother! We are very blessed that Caleb has such a caring and unselfish brother!!!

Dave’s job is busy. He has a great boss and group of folks who have picked up the slack when Caleb’s needs call! I am thankful for that because we are a team and I often need him. Working in the medical field has provided him with some additional insight on how Dr.’s work and he’s even talked to several Dr.’s about Caleb. We knew the job was a God send but he occasionally provides us “reminders”.

My job continues to be busy but they continue to allow me flexibility to deal with Caleb’s needs. I also have a great team that always asks about Caleb and offers to help me in any way they can. Another blessing!

We still have the property in WV that we have tried desperately to sell for longer than we care to discuss. With the falling housing prices and lots of prayer we decided to pull it off the market and just put a For Sale By Owner sign on it for now. We just couldn’t get what we needed out of it and it had been listed for approx. 500 days. That was the 2nd time around! It was not the most popular choice, but it was one we prayed about seriously for months before doing. It’s in the moments you step out in faith, not necessarily doing what everyone expects you to do, that God shows you his greatness and grace!! We know he’s working this out too!!!!! His perfect timing is the key!

Thank you all for your continued prayers and support of us!! We wouldn’t want to do this alone!! We want to say a special thanks to Memaw who takes care of Caleb 4 days per week for half a day each day!! She has a tough job and we could never repay her for all she does! Caleb is fortunate to have so many people that care about him!!

Feel free to pass this on to anyone that I may have missed or that may be interested! It has been my goal to share Caleb’s story and our journey with anyone I can!! You never know who it may touch!

In closing, we hope that all of you will take time to count your blessings, no matter how big or small!! We wish you a wonderful, prosperous, healthy, & happy 2009!!!

Update 11/3/2008
I wanted to update you on Caleb’s status. We have been working with his neurologist to get a medication combination that would control his seizures and try to get him off of Phenobarbital. We got to the lowest dose of Phenobarbital we’ve ever been able to make it to and he suffered 2 serious seizures within the last 10 days, both approx. 4 minutes. Last Thursday p.m. he stopped breathing during the seizure and I had to give him his emergency seizure medication. His doctor increased the Phenobarbital again. We had an appointment today and we now have another plan of action. Caleb is currently taking 4 different seizure meds (Depakote, Phenobarbital, Trileptal, and Lamictal), and clonidine to help him rest. Friday evening we will begin reducing the depakote and at the same time increasing the Lamictal to it’s maximum dose. Within 2 weeks this should be complete. If all goes well we will get blood work and another EEG in the next 4- 6 weeks. We are scheduled to see the Dr. again 12/29/08 to make further medication adjustments. Brain surgery is still an option but for now the doctor wants to continue to work the medications to see if we can find something that works! We are fine with that!!! J

Caleb has had some old symptoms resurface, like hard blinking and complaining of having something in his eye when there is nothing. The Dr. said this could be a type of seizure (partial or myoclonic) and we are supposed to try to get video of him doing this. He’s been extremely sensitive to sounds and light, more than normal. He’s had more “ticking” (involuntary hand movements). In addition, he’s been clumsier.

He is doing well in school so far this year! He has great teachers and a lot of support! We pray for continued progress with school.

The 2 seizures have set him back but he is a tough kid!! We continue to have Faith that God is working in the midst of this journey! Caleb always asks for someone to pray for him when he doesn’t feel well. He knows where his healing/help comes from!! We know his progress has been a blessing and we are thankful for that. We won’t give up praying and believing for complete and total healing!

Austin is doing great! He turned 11 years old on 10/25. I can’t believe it! He is doing well in school and has made more new friends this year. He even has a girlfriend J

We want to thank all of you, our family, co-workers, and friends, who continue to support us, pick up the slack for us, and pray for us! The encouragement and just knowing so many people are pulling for us is comfort!!!

P.S. - We plan to take our Team SRCH4CALEB to Washington , D.C. , Saturday March 29, 2009, for the National Walk for Epilepsy. Stay tuned for more information. Mark your calendars - we’d love to have you join us!!

"Be kinder than necessary, for everyone you meet is fighting some kind of battle."

Update 8/20/2008
We took Caleb for his neurology appointment this afternoon. We were prepared to hear about surgical evaluation because the last medication trial was unsuccessful. The Dr. decided there is one more drug (Lamictal) he wants to try before moving forward with the surgery route. We will begin the new med this Sunday. The entire process of adding the new one and taking away 2 of the 3 old ones will take 9 weeks. If this is successful then PTL… YEA….. Mission Accomplished!!!! J We are praying for healing more than ever!! J If it’s not successful then we will get a referral for surgical evaluation. The process moves much faster than we thought. Surgery could happen within a couple of months of getting the referral. We could be looking at early next year! I’m so blonde…. I thought they would do the surgery here in Norfolk at the Children’s Hospital! He said “no way” you want a place that does this everyday!! Makes sense and now we know why I’m not the Dr! LOL! In his opinion Yale is the BEST place, so we will travel to CT, if necessary!! Below is a link to the Yale website with surgical information. It’s a lot to take in!! I started to stress and worry about things right away and had to quickly get myself in check!! We will LET GO AND LET GOD and will take it all one day at a time!!! As I’ve told many of you recently Caleb has such a great spirit!! He is the one that endures the hardest part of all this, yet he wakes up smiling and happy every day!!!

http://epilepsy.yale.edu/patient/surgicalprocedures.html#evaluation

We certainly would appreciate extra prayers from all of you as we continue this journey!!!!

Thanks for all your support! We are grateful for all of you!!

P.S. – A special thanks to Memaw for going with us today and entertaining Caleb so we could take everything in!!! J

"Be kinder than necessary, for everyone you meet is fighting some kind of battle."

Update 6/26/2008
I wanted to give an update to our family and close friends. Caleb had a neurology appt. yesterday. Our appt. was only supposed to be for 15 minutes but the Dr. ended up spending an hour with us. He is AWESOME… a true blessing! I had my normal list of questions and he had asked us to keep a log of Caleb’s headaches and seizures, which I also had w/me. My first question was “Do you believe this really was Viral Encephalitis since you’ve had time to review his hospital lab work/records and have observed him?” He answered “YES, it’s the only thing that really makes sense, with the way Caleb got sick so fast and so acute”. It’s the most definite answer we’ve gotten. He reviewed the headache/seizure log. It’s been his opinion that Caleb’s migraine type headaches are really seizures. Since our last appt. (4/24/08) Caleb has continued to have headaches/seizures at least every 10 – 15 days (sometimes more frequent). He said that is too much! He said that this has been going on for 3 years and that’s too long. He has said since our first visit with him that he wanted to get Caleb off the Phenobarbital and Depakote (valporic acid). He believes the Phenobarbital is causing Caleb’s learning disabilities, behavior challenges, etc. He believes Depakote is the wrong medication for Caleb’s type of seizures. We will begin tomorrow with a new medication, Keppra, that he hopes will replace the Phenobarbital. We will add the Keppra and reduce the Phenobarbital consecutively, with the Phenobarbital being completely gone within 30 days!! That is SUPER aggressive!! In the past any time we have reduced the Phenobarbital Caleb has had increased and more intense seizures. We are a little nervous. If we get through the next 30 days and he’s doing o.k. then we will start to reduce the Depakote getting rid of one pill per week until that’s gone. He said this is the final medication change he wants to make and if Caleb still doesn’t have seizure control in August (when we have our next appt.) then he wants to begin the surgical evaluation. He believes Caleb will be a candidate but the testing will take months or even a year to determine for sure. If he does qualify then they will remove the area of the brain that is causing the seizures. The thought of Caleb being seizure free and not having all these issues is wonderful but the surgery scares us! Please continue to pray for us and especially Caleb! We’ll keep you posted as we learn more or if Caleb experiences any challenges from the medication changes! Thanks for all your support and prayers!

Update 6/5/2008

I always like to take this day to give an update on Caleb. Today is the 3rd anniversary of Caleb’s illness. It’s a day filled with many emotions for our family. We mourn what we lost that day and the days to follow in June 2005. We are happy that we still have Caleb with us. We are thankful for the progress he has made. We are reminded of all the love and support we have had from all of you and it fills us with joy! I’ve attached a picture of Caleb from this morning before he got on the school bus!! He’s come a long way!!! J

Caleb continues to make progress in all areas. He is still experiencing a seizure approx. every 7 – 10 days. The number of migraines has reduced to approx. 1 per week. Since our move to VA Beach in December we have been working with a wonderful Neurologist. He has made some medication changes and is very interested in stopping the seizures. We are blessed to have found a Dr. with a passion to help! Caleb continues to struggle with some sensory processing, but overall he’s doing well. He will have to repeat kindergarten next year, but he did make good progress this year and we believe next year will be even better! He continues to get speech and OT at school twice a week and also has a wonderful special ed teacher that works with him daily for about an hour.

He is full of energy and loves life!! He continues to be an inspiration to our family! We will celebrate Caleb’s 6th birthday next Saturday, 6/14 (same day as his daddy!). I still can’t believe my baby is 6!!!

Austin continues to be a great big brother! He has more patience than any 10 year old I know!! Austin was diagnosed with a serious case of Asthma 3 weeks ago, so we are working on getting that under control for him! It certainly hasn’t slowed him down any!! J

I want to THANK all of you for everything you’ve done for us over the last 3 years!! The prayers, support, encouragement, etc. is what has kept up going a lot of days! We know God is in charge and we believe he gave us all of you to help us through this journey!!

"Be kinder than necessary, for everyone you meet is fighting some kind of battle."

Update 3/26/2008
Many of you have supported us in the upcoming Walk for Epilepsy so I thought this would be a good time to give an update on Caleb.

Most of you know that we relocated to VA Beach in December so that we could have access to better schools, medical care, etc. Since we arrived God has continuously made a way for us.

Dave started a wonderful job on 2/15/08 working for a large medical group in the Norfolk/VA Beach area.

We went through the review process in the school system here and were able to put an IEP (Individual Education Plan) in place for Caleb. This allows him to receive 50% special education help in the regular Kindergarten classroom. He is also still receiving speech and occupational therapy weekly at the school.

Caleb has had increased seizures and headaches since we arrived. We have noticed some behavior changes, lack of focus, occasional slurred speech, etc. in the last several months. Caleb’s new Pediatrician was able to get us in to see a Neurologist at the Children’s Hospital in Norfolk (Children’s Hospital of the Kings Daughters – CHKD) on Monday. He worked us in while he was on call. I took Caleb’s MRI films from 2005 and a stack of medical records I thought would be helpful. He spent an hour with me reviewing Caleb’s history and examining Caleb. He immediately sent us for blood work, concerned that Caleb’s medication levels were not right. He then had them schedule us for an EEG the next a.m. (Tuesday) at 7:00a.m. After the EEG he met with us again to review the blood work from the previous day and put a plan of action in place. I was so pleased with his sense of urgency for Caleb. It’s something we haven’t gotten from any other Dr. He also took the time to show us on the MRI where the brain swelling was and it was amazing that Caleb’s right hippocampus in 2005 was 3 – 4 X’s the size of the left! No one had ever shown us that.

Below I’m going to summarize what we’ve learned this week and the plan of action.

1. The Dr. believes the “migraines” Caleb’s been having are really seizure related.
2. He believes Caleb is not taking the correct medication for his type of seizures.
3. He believes some of Caleb’s issues (writing, lack of focus, behavior, etc) are due to the medications.
4. He wants to get a current MRI of Caleb’s brain. He hasn’t had one since he was in the hospital in 2005.
5. He changed the dosage of Caleb’s medications yesterday. The overall plan is to eventually get him off the depakote and Phenobarbital.
6. Caleb’s EEG did not show spikes/seizures. That doesn’t mean he doesn’t have seizures. It means that his seizures could be too deep in the brain for the EEG to pick up or that he didn’t have any during the 30 minute testing period. It did show some slowing on the right side of the brain, which he has had since his illness. In 06/05 at the hospital he actually had slowing on both sides.
7. He advised us that Caleb WOULD BE a candidate for Brain Surgery if we could not find medications to control the seizures. We had been told in 2005 that he was not a candidate, but at the time his brain was a mess and he’s since had a lot of healing, this could now be an option. It would not happen for a year or two at the earliest. Basically, they would remove the problem area of the brain (for Caleb that’s the right hippocampus). Usually the area that is causing the problems is only doing that!! He said it’s one of the most successful Epilepsy brain surgeries done and typically people have no problems or seizures afterward. Of course, if they decide to do this, Caleb will have to go through a course of evaluations and testing. The thought is very scary, but if it would give Caleb a chance at a “normal” life we’d do it in a second.

Austin’s Update J
Austin loves living at the beach! He really likes the school. He has struggled with the curriculum because he came in the middle. He starts math tutoring next week so hopefully that will get him on track. We plan to keep him busy with camps and swimming this summer. He continues to be super protective of Caleb and keeps a good eye on him at school and on the bus.

We know God is in charge and we continue to pray and believe for complete healing, His perfect timing!! Of course my biggest challenge is being patient. I’d like everything fixed right now. I have learned that going through the tough times is what makes us the people we are J A Pastor once compared the tough times/people to an oyster getting a grain of sand in his shell and the sand was irritating but over time it became a beautiful Pearl !!

We can’t thank all of you enough for your support, prayers, and encouragement during this journey! You have been a blessing to us!!

I hope to have pictures of the Epilepsy walk to share next week!

Please feel free to forward this to anyone I may have missed.

If you’d like to visit Caleb’s Epilepsy Walk page please go to this link http://www.walkforepilepsy.org/site/TR/Walk/General?px=1181243&pg=personal&fr_id=1040

Tracie Thomas and family

"Be kinder than necessary, for everyone you meet is fighting some kind of battle."

Update 11/11/2007
We've been busy with Caleb this year. He has had several different tests to assess his IQ, Speech and Language, Motor skills, Behavior, etc. We are thankful for the progress he has made. As you can see below we have a lot of work ahead of us. Caleb turned 5 in June and is attending Kindergarten. He enjoys school and socially has made great progress this year! We have continued to struggle with his seizures this year. He is now taking 3 different seizure medications. We added the 3rd one at the end of August after he had a 9 minute seizure and then 2 more the same day. The new medication has made him more hyper (if that was possible), but he hasn't had any seizures for almost 2 months.

Occupational Therapy Testing (04/07)
1. Caleb showed Sensory Processing problems. Sensory processing involves the brains ability to organize and make sense of different kinds of sensation entering the brain at the same time (auditory, visual, vestibular, touch, multisensory, and oral sensory).
2. Visual Motor Integration = Poor/very low performance.
3. Visual Perception = very low performance.
4. Low muscle tone in upper extremity.
5. Fine Motor = Very Poor.
6. Gross Motor = 1st percentile for his age.

Speech and Language Testing (04/07)
1. Language/Auditory Comprehension = Age equivalent is 3.9 years.
2. Expressive Communication = Age equivalent is 4 years.
3. Expressive one word picture vocab. test = Age equivalent is 3.10 years.
4. Speech sound production disorder (Dysarthria).

Neuropsychological Testing (11/07)
Caleb was given an IQ Test and overall Academically he scored "slightly delayed" at a 4 year 4 month age level.
1. Verbal = slightly below average
2. Performance (picture) = Average
3. Visual Motor Integration = 3 year old level
4. Memory (verbal and picture) = below average
5. Letter and Number recoginiton = below average
6. A structured Behavioral Management Program was highly recommended

We have started exploring some natural remedies that can help Caleb feel better so he can "do" better.

We are moving to VA Beach 11/30/07 and are very excited! They have great schools for both the boys! We'll also be much closer to medical care and family.

Austin turned 10 last month and is in the 4th grade this year. Hard to believe he is growing up so fast. He continues to be the BEST big brother! He keeps a close eye on Caleb at school and on the bus!!

We can't thank all of you enough for your support and concern for Caleb and our family over the last 2 1/2 years (yes, it's been that long since he got sick). Considering the Dr.'s didn't know how bad his brain damage was or if he'd walk, talk, etc we definitley count our blessings everyday and continue to believe for Caleb's total healing!! He is a trooper and we know God has a plan for him.

Update 4/16/2007
I decided to send only a family update about Caleb’s appointments Wednesday. We will be getting reports from the testing he had within the next 30 days and I will provide more information. We were overwhelmed with information and I’m sure I missed things. Let me start by saying we are thankful for the progress Caleb has made over the past 22 months. He has come so far from when we brought him home from the hospital and he couldn’t walk, talk, etc. We were reminded that Caleb still has many challenges and a long road ahead of him (and us). We are unsure how or if he will be able to attend kindergarten in the fall based on their findings. We know he can’t get all the services he needs locally so selling our house has become even more important.

Austin was EXCELLENT during Caleb’s appointments. He played his games and was super patient! We are thankful for him!!

Knowledge is power and we gained knowledge about Caleb and our situation!

What we know:

1. He has a learning disability. In many areas he’s on a 3 year old level.
2. He has delays in speech and language.
3. He has fine and gross motor delays.
4. He has Sensory Processing Disorder (SPD) – This explains so much for us! Basically his brain does not process information correctly or the same way as a “normal” person. Some examples are him not feeling pain, being sensitive to light, not using appropriate touch or touching people too much, always being on the move, etc… there is a big long list! There is a great website I found last night that I plan to visit and order some materials from www.spdnetwork.org.

What we have to do:

1. They recommended Direct (one on one) Occupational Therapy with Sensory Integration for at least 1 hr per week.
2. Speech and language Therapy for at least 1 hr per week.
3. He needs a lot of one on one interaction.
4. He needs a lot of positive reinforcement (he refused to do things he thought were too hard until he had lots of encouragement and praise).
5. He needs a lot of praise for trying (regardless of the outcome).
6. He needs structure. They recommended a visual schedule (they use this at his school).

The OT Therapist gave us a stack of home programs to use to help him with his motor skills and we still have his tunnel and mats, etc. that we used to get him walking! We will be pulling those out again.

We continue to believe for Caleb’s complete healing! In God’s time, not ours!! 

Update 2/27/2007
I have lots to tell so bare with me..... I'll try to sum it up as much as possible.

How is Caleb?
He continues to make progress in all areas. He did experience a brief seizure on Friday evening (2/24), it was the first one in approx. 9 weeks. No matter how many he has they are never easy to watch. We think he had too much excitement and that triggered it. He is doing well now.

Caleb had an appointment today with his neurologist at Kennedy Krieger Institute (KKI) in Baltimore, MD. It was a much anticipated visit for us because he had an overnight/video EEG in January and we were anxious to get those results. The Dr. ended up spending 1 1/2 hours with us.

What We Learned
1. His EEG was NORMAL!!! PTL!!!! It is the first EEG in 20 months that has been "normal". Basically this means that they did not pick up seizure activity. It does not mean he doesn't have Epilepsy or he won't have seizures, but the previous ones have shown a lot of "extra acitivity/electricity. So this is HUGE progress for Caleb. The Dr. said it is hard to say if the seizure medications have something to do with it... he's been on seizure meds the entire time so for us it's positive progress that we are VERY thankful for! I actually cried when the Dr. read us the results... after I questioned to make sure I heard correctly!! She also said this is a good sign that his brain is HEALING!! We have prayed so hard (with many of you) for Caleb's healing and I specifically prayed all the way to the test and during the test that this EEG would not show anything. Prayer answered!!! PTL!

2. Caleb's pre-school teacher expressed some concern for his learning ability a couple of weeks ago and we agreed with her. Most of the other 4 year olds in his class can at least write their name. Caleb can not, he can't write any of his letters or numbers. We have worked with him at home and he can't seem to grasp the tracing of letters/numbers. He makes lines and circles very well. His Dr. agreed he probably has a learning disability so we are scheduled to have Neuropsychological testing done in November (the earliest they could get him in). This is a battery of tests that lasts 4-6 hours and could go longer if the child needs breaks. This will determine where his delays are and what atmosphere he'll learn best in, etc..... We look forward to any guidance in helping him.

3. His Dr. also questioned if he was still receiving Occupational Therapy (OT) and Speech Therapy. We advised her that Caleb never received speech therapy. He was denied speech therapy through our local school system even though he lost all of his speech. We never agreed with this and are happy we will get another opinion. His speech is GREAT considering he had to learn all over again and did so with the love and help of family, but he still needs work. We advised the Dr. he is getting 15 minutes of OT per week and she said that is not enough. We agree, but it was a battle to get the 15 minutes this year. He will get a new OT evaluation and recommendation. Both of these evaluations are scheduled for April 11, 2007.

4. We will decrease his phenobarbital again starting tomorrow. We are reducing it by 1/2 a tablet in the a.m. This process continues to be slow, but we believe the improvement in his behavior is due to the weaning of this drug. The first 2 weeks after reduction is the scariest because he's more susceptable to seizures and behavior changes while weaning. The last reduction was in November.

5. We reviewed some of Caleb's records from Children's Hospital with the Dr. We had questioned at our appt. in October the possibility of Caleb having a metobolic deficiency. The bloodwork and spinal records from Children's showed that Caleb had significant abnormailities in some areas (Lactic Acid & Plasma). She feels it's enough to refer us to a Metabolic/Genetic Specialist for evaluation. She said Dr.'s who do this are VERY hard to find and usually overbooked. She referred us to a Dr. at John Hopkins (next door) and we are supposed to hear from them in the next 7-10 days to see when we can get an appointment. This is a completly different direction for us, but since Caleb's diagnosis of "viral encephalitis" was not 100%, actually his hospital discharge paperwork says "most likely viral encephalitis", we have to explore this possibility. It's one of those things you just need to know. I have not done much research on metabolic disorders but I found this explanation online "Less commonly, seizures are the result of a metabolic disease, an inherited disorder that results in an inability to properly utilize a particular nutrient in the body, such as a vitamin or an amino acid. " There are many different metabolic disorders and 20-80 of them can cause seizures. A lot of these disorders can be controlled with diet and supplements. Caleb was given a high dose of Vitamin B6 and Iron at Children's (according to the records). We will keep you posted on this.

Of course, we want this all fixed right now, but we are learning patience. The EEG is some tangible proof that progress is being made and God is working! We are reminded in God's time, not ours (that has been a hard lesson for me). We continue to covet your prayers and words of encouragement. They mean so much to us! I keep all the emails you guys send for Caleb's scrapbook... one day he'll be able to see how many people love him and his family. It's been amazing! Thank You! With that said it has been a challenge being in WV without our family close (1hr 45 minutes to the closest) and medical treatment being so far away. Our Church has been the biggest blessing of living here! I don't know what we would've done without our Church family and a great Pastor who has taught us so much!! We currently have our house for sale and are looking to move back to Northern VA or the VA Beach area, where we have family for support and are closer to medical care. Don't get me wrong WV is a beautiful state and smalltown life is nice, but we need family/support right now more than anything! Dave is actively seeking employment in both NOVA and VA Beach. With all the appts. in Maryland coming up I thought maybe we should consider that area too . Please continue to keep us in your prayers AND thank you so much for just caring about us!!! We are blessed to have you in our lives!!

God Bless!!!

Update 1/22/2007
Caleb had an overnight video EEG last Thursday/Friday at Kennedy Krieger. The attached picture is very fuzzy but you can see his mummy like head wrap. He was very nervous at first about all the wires. We told him he was going to be like a space man with all the wires and the bandage was his helmet. He did very well!! He was only awake for approx. 30 minutes of the test and then he was asleep. We were able to catch some of the "jerking" on the test. The tech that conducted the test said he was great and very "precious". We will his Dr. next week (1/30/07) to discuss the findings and future plans. I will update everyone after that.

We count our blessings daily and all of you are part of them!! Thank you for all your support and concern.

Nahum 1:7 God is good, a stronghold in the day of trouble.

Update 11/9/2006
With Thanksgiving among us I wanted to give a "special" Caleb Update. We have much to be Thankful for!!

Caleb is doing GREAT!!! With the adjustment of his meds last month we have seen a complete change in him. He is able to sit and focus long enough to work a puzzle. He is less agressive. His behavior is just so much better overall.

He has been 4 weeks with NO seizures or headaches!!!!! PTL!!!!! This is the longest time we've been since 02/06.

We count our blessings everyday. We remind ourselves that our God is Bigger than any of this!! Each day we walk by Faith, one step at a time, knowing that God has used this for Good and he is in charge!

We challenge all of you to stop and count your blessings, not just at Thanksgiving, but everyday. Don't sweat the small stuff....... If God is for us, who can be against us?

We covet your prayers!!

P.S. - Austin has been struggling in school this year. We know he's endured a lot in the last 18 months too and we appreciate prayers for him as well.

Update 10/11/2006
We had another appointment at Kennedy Krieger yesterday with Caleb's new Neurologist (Dr. Anne Comi). We feel positive about the Dr. visit and course of action. She spent another 1 1/2 hrs. with us. She answered all our questions/concerns and never made us feel rushed. She seems interested in trying to help us get some answers and improve Caleb's circumstances.

The trip itself was "emotional overload"!! 12 hours. About 9 of those in the car!!

Plan of Action:

1. We are cutting the phenobarbital back slightly. The levels of phenobarbital in his system were a little high and could be playing a factor in the additional hyperactivity we have been seeing. Ultimatley he should be taken completely off the phenobarb, but we will be taking that VERY slow, given the last try.

2. She wants to do a prolonged overnight video EEG. This will give her more information on the "myoclonic jerks", and some of the daydreaming like spells he has had, as well as his seizure activity. He hasn't had an EEG since Jan. so we'll be able to see if he's had any changes in the seizure activity. This is currently scheduled for Jan 18, 2007 at 5:00p.m. This will require Dave or myself to spend the night with him during the test.

3. She also ordered a MRI with spectroscopy (SPECT). This is a MRI that not only looks at the image(structure) of the brain but also the chemistry. It will monitor the blood flow in his brain, etc. He will have to be put under anesthesia for this. This will be done at John Hopkins (next door). We have to work with the insurance on this so we have not tentively scheduled it, but as soon as we can get the details worked out she wants us to have it done.

4. The Dr. said she wants us to come in more frequently to address concerns. We were told to start charting his headaches, seizures, daydreaming spells, jerks, etc and circumstances around them. We are to continue giving him extra fluids to drink and motrin (instead of tylenol) for his headaches.

We will keep you posted as we get these tests done and have our visit in December. We appreciate the continued support and prayers from all of you. We know many of you have Caleb on your prayer lists at church and we appreciate that and ask that you continue to keep him on there. We can't have too much! We also ask that you continue to pray for us, for strength. We want to say a special thanks to Memaw for coming to WV to watch Austin so we didn't have to pull him out of school and drag him along this time!! I know he appreciated it too.

Update 7/19/2006
I am sooo happy to report we have found a Neurologist that is interested in helping us with Caleb!!!! We had our visit at The Kennedy Krieger Institute yesterday and it was worth the long trip and such a blessing!!!! We met Dr. Anne Comi, a child neurologist. She was great with Caleb and offered a wealth of information... more than we've had since Caleb became ill over a year ago. One of the first things she did was reassure David and I that there was nothing we could've done to prevent what happened to Caleb. She said Encephalitis is rare and when it strikes it is like a lightning bolt. AMEN! She spent almost 2 hours with us (that's the most time we've had with any Dr. in over a year) going over Caleb's medical records, MRI's, examining him, listening to our concerns, answering our questions, and formulating a plan of action!

The last 2 months!!

Caleb has continued to have mild seizures, approx. 1 every 2-3 weeks.

He has been having headaches more frequently.

What we learned!!!!

1. She showed us on the MRI where the damage to his brain was, no one had done that before. She also said his brain is still healing and developing.

2. She explained why she thought the other Dr.'s chose the medications he's currently on. Phenobarbital because it's a fast acting anticonvulsant. It doesn't take weeks to get in his system to work. The Depikote is typically used for multifocal seizures (seizures coming from both sides/more than one area) and migraines. No one ever explained this to us either.

3. Phenobarbital is known to cause behavioral problems in children, especially between the ages of 2-5.

4. She did notice some very mild weakness on his left side. It wouldn't be obvious to most people. We notice it mostly when he gets tired.

4. Headaches are common with the brain activity he has. He's been having more headaches in the last month.

Plan of Action!!

1. Increase his depakote and reduce the phenobarbital. She will be getting us a schedule for this in the next week (after she gets his blood work back). It will be a very slow process. There are other meds we can try in conjunction with the depakote if he starts to have more frequent or longer seizures.

2. She gave us a prescription for Diastat, which is to be used rectally if he has a seizure of 5 or more minutes. This is supposed to stop it!! We were never offered this before and gives us some peace of mind considering we are about 15 minutes from rescue.

3. For the headaches we are supposed to make sure he has plenty of fluid intake (more than the average person). He's not overweight so she didn't care if it was juice or what. Whatever he likes. She also said to limit his chocolate and his time in direct sunlight, which can contribute to migraines.

4. For his behavior we are going to hang tight. She doesn't want to put him on any medications to confuse the issue while trying to get his seizures under control. She also said she wants to see what happens when he's off the phenobarbital.

While we were there for our appt. we were reminded of just how blessed we really are!! There were many children there in wheelchairs that couldn't communicate or anything. We are sure those parents would've given anything to have our issues. At least Caleb can communicate and he gives some of the BEST hugs!!!! We continue to have Faith that Caleb will fully recover. Somedays it's hard not to be impatient, but we continually remind ourselves in God's time, not ours!!!

Austin continues to be the BEST big brother! He went along when Caleb had his blood work done and he told the nurses that his brother was brave and he was not!!! He informed them there was no way they'd get blood from him! LOL!! He was very patient for the appointments and the trip.

We continue to appreciate your support, encouragement, friendship, and most of all the prayers!!! Our next appt. is October 10th.

Update 5/19/2006
We had Caleb's appt. at the Kennedy Krieger Institute yesterday and what a day it was!! An 11 hour trip, 7 of those in the car!!! Caleb was seen at the Dept. of Behavioral Psychology. Kennedy Krieger is right next door to John Hopkins! We met with an Intern (she said she's been in the field for 7 years) who spent 2 hours asking Dave and I questions about Caleb's birth, development, illness, injury, current behavior, skills, etc..... After that she gave us some suggestions to try at home for discipline. We have a chart to log his outburts and how we handle them (his consequences). This will definitley hold us accountable for "following through" on discipline. After the 2 hour paperwork and question and answer she said "we usually see patients weekly". YIKES! Of course we said we would do whatever it took to get the help he/we need, but knowing how far we had come she said she could do a lot of the consultations via phone, fax, and email. She is supposed to call us next week to see how things are going. She will also be contacting Caleb's teacher and special education team to collect some additional information on him. We have not scheduled another appt., but are going to take it one week at a time (one day at a time). We will go again when they feel they need to see him/us. We are still scheduled for July 18th to see the Neurologist.

Thanks Again for all your support and prayers!

Tracie and family

www.kennedykrieger.org

"If God is for us, who can be against us?"

Update 5/11/2006
It's been about 6 weeks since I last updated so I wanted to take a minute. We have had some ups and downs. Caleb has had more seizures since the last update and experienced set backs in several areas (coordination, potty training, increased behavioral issues, etc). We have seen improvement in all of those set backs in the last 10 days. His medication has been back to it's initial dose for about 5 weeks. He hasn't had any seizures for 11 days (and counting)!

I got word yesterday that Caleb has been accepted to the neurology program at the Kennedy Krieger Institute! PTL! We are very excited and know that God is in charge!! His appointment for the behavioral/psychological evaluation is next Thursday, May 18. We have asked if Caleb could see the neurologist the same day, they are supposed to get back to me today or tomorrow. Tentively, our appointment for that is July 18 (the first opening). www.kennedykrieger.org

Caleb is getting the 30 minutes of Occupational Therapy at school and is doing well. We have an appointment on May 26 to discuss his educational plan for next year. His teachers have been great during this period. He really enjoys the program.

We feel so blessed to have all of you on our side. We can't thank you enough for your prayers and support. Just asking "how's Caleb?" lets us know you care! Thank You!!

Austin continues to be a great big brother and a huge help to us!! He has really grown up in the last year. He has decided he likes to put Caleb to bed at night and it's so sweet :)

Have a blessed day!!

Tracie Thomas and family


It was JUST a virus!!

Nehemiah 8:10 - And be not grieved and depressed, for the joy of the Lord is your strength and stronghold.

Mark 11:23 - Truly I tell you, whoever says to this mountain, Be lifted up and thrown into the sea, and does not doubt at all in his heart but believes that what he says will take place, it will be done for him.

Update 3/29/06
We've had a busy 3 weeks so I wanted to take the time and give an update on Caleb. We attempted to take Caleb off the phenobarbital per Dr.'s orders, in hopes it would help with some of his behavioral issues and the fact he hadn't had seizures for 8 months. On March 3rd I sent you all an update because Caleb had a seizure. He has had 3 others since that update (the longest being 9 minutes). We finally got the Dr. to put him back on the phenobarbital Monday night. We didn't see enough of a change in the behavior and it just wasn't worth it with the return of the seizures.

Monday afternoon I emailed a neurologist we had seen at Children's Hospital in Washington, D.C. and asked if she remembered Caleb and explained the challenges we have been facing (seizures, behavior, etc). She called us Monday evening and she did remember Caleb and she suggested we contact the Kennedy Krieger Institute in Baltimore, MD www.kennedykrieger.org . They work with behavior disorders, epilepsy, brain injury and many other things and have affiliations with John Hopkins and NIH.
Yesterday I contacted them and did an over the phone interview about Caleb. They agreed to do a psychological/behavioral evaluation of him. His appointment is May 18 at 10:30a.m. I also requested to see the neurologist team there. He has to "qualify" for them to take him. His information has been forwarded to them and we are waiting on approval/denial. This is the first bit of guidance we've had in months. On another good note, we had a meeting with the Special Education team at Caleb's school this a.m. and they had done an occupational therapy evaluation on Caleb. He will start getting 30 minutes of occupational therapy during his time at school each week. They sited deficits in fine motor strengthening, visual perception (ability to copy lines and shapes), and social inappropriateness (behavioral). We are excited he will get this help close to home!! This program really has been a blessing for us and Caleb!

Austin continues to be a great big brother!! He is very protective and very patient with Caleb.

Again, thank you for your support and prayers for us.

Tracie Thomas and family

It was JUST a virus!!

Nehemiah 8:10 - And be not grieved and depressed, for the joy of the Lord is your strength and stronghold.

Update 3/3/2006
I wanted to let you all know that Caleb had a seizure Friday evening. His breathing became shallow so we called 911. The seizure lasted for 8 minutes. It took the ambulance 15 minutes to get to us (they are consistant). By the time they arrived Caleb had come out of the seizure. The first man through the door was the one that scooped Caleb up and carried him out of the house in June and he remembered us. He said "you don't forget something like that." We agree! They checked his vitals and they were good. His heart was racing and he was very tired, but both of those are normal after a seizure. We made the decision not to go to the hospital. We did give him an extra dose of phenobarbital, which we have been weaning him off of per Dr.'s orders for the last 4 weeks. The last seizure we experienced like this was July 9, 2005. This was like "flashback" for us, but also a reminder of where we have been in the last 8 months and just how blessed we are!! His balance has been a little off since the seizure and the "myoclonic jerks" he has when he sleeps have been intensified, but otherwise, he is fine.

POSSIBLE CAUSE:
Austin was diagnosed with a bad case of influenza Friday (he had been sick since Wed. afternoon) and we were all given prescriptions for Tamiflu, which is supposed to lessen the symptoms of the flu. Caleb had one dose at approx. 1:00/1:30p.m. I called the pharmacist Saturday morning to see if there could've been drug interaction with the medications he takes for his seizures. The pharmacist said "there is not", BUT that in the clinical studies of Tamiflu there were reported cases of aggrevated symptoms in people with Diabetes, Heart Disease, and SEIZURES! We believe this may have been what triggered Caleb's seizure or maybe a combination of this and the lower dose of phenobarb. I will be in touch with his neurologist tomorrow to determine what to do moving forward about he phenobarb.

Austin is feeling much better and should be able to return to school Tuesday.

We can't express enough what you all mean to us! We appreciate the friends and family that support us daily. Most of all we appreciate your continued prayers for our family.

Tracie Thomas (and family)

Do not waste today's grace by worrying about tomorrow. It is absolutely amazing what we can accomplish in Christ if we live ONE DAY AT A TIME. Matthew 6:34 (NSB) "Therefore do not be anxious for tomorrow; for tomorrow will care for itself. Each day has enough trouble of it's own."

Update 2/2/2006
Many of you have already asked me about Caleb's appointment yesterday so I wanted to give an update. We had his neurology appointment yesterday, the first one in 4 months. Most of you know Caleb had another EEG 2 weeks ago and we got those results as well as some of our questions answered. Here is a summary of what we know.

1. There is permanent brain damage to the right temporal lobe, specifically the right hippocampus.

2. There was no change in his EEG. It was the same as the one done 7/28/05. It still shows a lot of extra "electricity" on both sides of the brain. It shows seizure activity on both sides of the brain (epilepsy). They were able to see the myoclonic jerks he has been having, but the Dr. indicated those are a direct result of the Encephalitis and not Epilepsy.

3. The involuntary movement in his left hand and his hard blinking are "motor ticks", caused by the Encephalitis.

4. The outbursts of anger, not being able to control his emotions, lack of concentration and attention, and sleeplessness are "impulses" caused by the extra electricity ultimatley leading back to the Encephalitis. This is not something he can control.

I had initially thought Caleb may be having some partial seizures, but the Dr. does not believe this is the case, but simply these "impulses" and "motor ticks".

Plan of Action:

1. The Dr. said there is really nothing that can be done about the "impulses" or "motor ticks", they just have to try to treat the symptoms the best they can. He gave us a schedule to stop Caleb's Phenobarbital over the next 5 weeks. That will bring him down to only one seizure medication. Phenobarbital is known to cause hyperactivity and can make kids "crazy". He (and we) are hoping to see some improvement in his behavior with the elimination of that medication.

2. He has more lab work in 2 months and we see the neurologist again in 3 months.

3. Dave and I are actively trying to get Caleb's medical records from all locations and plan to make an appointment with John Hopkins Brain Injury Program (I have confirmed that they do accept children in their program) for a second opinion.

We continue to remind ourselves that we are so lucky to have him and the fact that he is walking and talking has been amazing progress. We want to thank all of you for the continued support and prayer! You have all been amazing to us! Only God knows the future of Caleb's brain and we will continue to pray for "complete" healing!! One day at a time!!

Update 1/17/2006
I am writing to request a little extra prayer for Caleb (and us) tomorrow. He is scheduled for some blood work and another EEG. It is a 2 - 2 1/2 hour trip each way and the blood work is always a challenge because he was cursed with his mothers veins. We are hoping these tests will provide some additional information to the Dr. that will ultimatley help us understand what is going on with Caleb's brain. Some of you know we have experienced some setbacks with Caleb since early November. We believe he is experiencing what is called "partial simple seizures". We are also having some behavior challenges with him (this is not uncommon with brain injuries or epilepsey). We won't get the results of tomorrow's tests until 2/1 and I will let you know what we find out then. He did finally remaster the potty training!! YEA!!!! :)

Thank you all for your continued support and encouragement!