Jacob meets Coach Mike Martin and Coach Jimbo Fisher!!

If there were an upside to having a genetic disorder that causes tumor growth in just about every important place from the neck up (and some below the neck, too), it would be that (and I hope this is true for anyone out there experiencing even mild cases of whatever afflictions they may have) you get to witness first-hand the open arms and helpful, caring natures of so many people. Not just from your family members and friends, but from complete strangers that dedicate even a small amount of their time to come and show their support for you. Not for any benefit to them. Just for you. You get to see kindness beyond a superficial smile. You get to see what people are really capable of.

Our family has had so many wonderful opportunities over the past few years that have been made possible by truly great people that we could never repay with enough thanks and praise to show them how much each act of kindness meant to us. On Thursday of last week, we were fortunate to be a part of another of these adventures. To share great moments with great people in our community who took time and effort to come and show support for Jacob at a time when I think he really needed it from more than Tammy, Brie, Gavin and I. And so it began…


I cannot comment on the particulars of the events leading up to the game because, once again, Tammy orchestrated the entire ordeal. I know there was involvement from our Pastor, Bob Tindale, stemming from his daughter, Michelle (who works at Shands and was “ground zero” for all of this to unfold!), and from Carol Martin, who was absolutely wonderful to us! Tammy told me at lunch that she received a call from Bob Tindale regarding the Clemson-FSU baseball game that night. I went back to work hoping that we’d get to go to the game, but with the hectic schedule we faced (dance rehearsal, recital, an 8th grade dance, family coming from St. Pete, etc) I didn’t really have expectations to go. We made it to several games last year thanks to a co-worker and his son, but we didn’t manage to make it this year, and since this was the last series of the season, prospects were looking dim.


Tammy called me at 1:45 and informed me that in the last 40 minutes, she had spoken with Bob, and with Carol Martin (wife of the legendary Mike Martin), and that they had arranged for an evening at Dick Howser for all of us! WOOOOOOOOOO! Jacob, Tammy and I LOVE baseball! Football is great, and basketball too (for Jacob), but baseball is king. Nothing better. Well, maybe a few things, but baseball is up there. Really high. Anyways, with the blessing of my awesome boss (who I cannot thank enough for being one of the great people mentioned above), I left work to jail-break the kids from school and get home. Plans were to be at Gate 4 at 4:00pm and meet Chip Baker for BP! Of course, since even the smallest tasks are rarely easy for us, Jacob wasn’t at school (he was at Leon learning his way around for next year with Cobb’s vision teacher). After phone calls and texts, I succeeded in loading up the kiddos. Objective complete.


Right on schedule, we parked at the FSU Circus (because we never told Jacob what the real plans were, though if he couldn’t figure out that we were headed to FSU given that we were all wearing garnet and gold- including himself- , well…). We strolled across Chieftan Way, took a picture in front of the fountain, and made it to Gate 4, Mike Martin Field at Dick Howser Stadium! As promised, Chip Baker, Director of Baseball Administration, came and let us in and immediately took us to the field, Jacob at the head of the pack, to start our afternoon! I’ve been on the field before (though not exactly “allowed” to be… and at night…), but this was different. As we walked on, everyone did their thing. Taking batting practice, infield and outfield, warming up. Chip led us to the BP cage surrounding the plate where Mike Martin stood, posted up against the rail, watching Sherman Johnson take some hacks. He introduced us to Coach Martin (who, if you’ve lived in a hole your entire life, is FSU’s baseball coach, one of the all-time winningest coaches in NCAA history, leading FSU to 30-something consecutive post season appearances... Here, check it out yourself: http://en.wikipedia.org/wiki/Mike_Martin_(baseball_coach) ) and then to a series of players before heading off to do… a little bit of everything from what I hear! Coach Martin had also recruited another coach to come and hang out with Jacob on the field. Coach Jimbo Fisher. At this point, it was evident that no matter how the day turned out, it was going down as one of the greatest days of the year! We all introduced ourselves, took some pictures and then got a chance to just hang out with them for next half hour or so during BP. Parker Brunelle, Stuart Tapley and Sherman Johnson were some of the first players that Jacob met, who, at this point, was beaming! Mike Martin Jr. came out and kicked it too. We got to talk baseball and football with two of most knowledgeable men in their respective sports. Amazing! Both coaches were outstanding to us. Not just to Jacob, but to all of us. While Jacob and I were shootin’ it with the coaches, Tammy, Brie and Gavin were hanging out with James Ramsey, who was awesome. What a great kid. Gavin got a ball from Parker (maybe?) and while he and I watched some of Tapley’s swings with Coach Martin Jr., Tammy got to talk with Coach Sr. Jacob got a signed FSU TPX hat from Coach Martin and a signed football from Coach Fisher. Bandit!

After BP, Chip came back to take us on a tour of the facilities. We got to see the newly-remodeled trophy room (which, if you visited the link I posted, houses all the trophies and accolades mentioned!) where Coach Martin came and played catch with Gavin, and then Jacob and I got a mini-tour of the clubhouse. The players were all relaxing, eating, etc before the game, so we didn’t stay long. Jacob thought it was cool to see Buster Posey’s old locker that they keep open for him to come back whenever he wants! Very cool. After a 20 minute potty break for G (literally, thought he fell in), Chip showed us out and we went to our seats. Section 6A.


Imagine that you could pick any seats out for a baseball game. Any seats. Right behind home plate? First row, maybe offset a little so you can watch every pitch into the catcher’s glove? Yeah, they were THOSE seats, courtesy of Mrs. Carol Martin! Incredible! We could taste leather and clay! Jacob could actually see the players, the pitches and the swings! And there was room for Gavin to play! It was such a wonderful evening! The game was great, with FSU having bases loaded twice in the first 3 innings, and then busting it open in the fourth. We saw a couple homeruns, a nasty rocket right back at Gilmartin (FSU’s starting pitcher) and were involved in more than a couple of the “N-O-L-E-S” chants! Happy campers! We met Mrs. Martin later in the game and thanked her for her generosity. She gave Jacob one last gift, a ball signed by the entire team!


I took Gavin out of the park after the seventh inning stretch (it was a long game since the Noles put a ton of guys on base) and Tammy and Jacob and Brie stayed to watch FSU close it out with an 8-6 victory in what turned out to be the last regular-season W for the garnet and gold! Thank you, gentlemen, for a wonderful performance!


We headed home, late for a school-night, but with smiles from ear to ear. In a matter of hours, we met a legend, a legend-in-the-making, the man behind the scenes that makes FSU baseball possible, players that are now more than numbers to our family and a woman who graciously arranged a dream-come-true evening for a family she’d never met. This was another reminder that great people are everywhere. I feel fortunate, as does my family, to have met so many in our endeavors.

TD did a fantastic job describing our trip to Mike Martin Field last week.  It was a truly amazing experience for all of us.  Watching Jacob smile ear to ear and being in the presence of so many sincere people (who are such important authority figures in our community and nationwide) was heart-warming.  I just wanted to end the blog by saying thank you to Michelle for taking the time at each infusion to see how not only Jacob is doing, but how we all are doing.  Your job must be so hard at times.  We appreciate you so very much!  Thank you, Michelle, and Pastor Bob, for making the calls and setting up this FSU Baseball experience for Jacob and our family.  It was a very special evening.  How many moms can say their toddler played catch with baseball legend Mike Martin and their teenage children were able to just causally hang out with the next FSU Football legend?!  Saying thank you to Coach Martin, Mrs. Carol Martin and Coach Fisher doesn't seem like enough.  It was so rewarding to meet them all.  Being raised in Tallahassee and having a great love for FSU baseball and football all of my life, it was incredibly awesome for me to watch my children interact with them.  Mr. Chip Baker and the many FSU baseball players we met were fantastic too!  All of them were so great to Jacob.  Jacob spends so much time fighting NF2 it is a blessing to have moments watching him float on air and feeling like he has no worries in the world.  It is people like those mentioned in this post that can make a such a huge positive difference in the lives of children living with serious illnesses.  I'm so happy Jacob was able to be one of those kids touched by their kindness.  It will be a memory we will all always cherish. 

Tammy

SAIT #4

May 4, 2011                                                                       (written by Thomas)

Alright, folks. Time for some more exciting, chemotherapeutic adventures in the Poucher-Grimes household!

Tammy and I had discussed me going to Shands since the first infusion, but, as you are all aware, Tammy is accustomed to doing things on her own and is a very capable and determined woman. There was no need for me to go to the previous infusions because we had help on most, and because Tammy is fully capable of handling Jacob, Brie, Gavin, nurses, doctors, vehicles, the sun and probably the universe on her own (And I mean that in a very admirable way; She can take on the world and come out in one piece. She’s amazing!). With a full schedule in May, June, July and August, though, we thought it was best to get my feet wet so that if the need arises, I’ll be prepared for a solo infusion trip with Big Money. And off we went.

Everyone is getting used to the I-10 trip at this point, so the drive was uneventful in terms of the kids. Jacob and Gavin slept. It was, however, one of the first times in a long time that Tammy and I sat down and talked about nothing important for hours. It seems that there’s a lot on the plate lately, so it was a welcomed conversation. Time flew. Tammy informed me of step #2 (step #1 was getting out of bed on time…) which was getting Jacob to put the lidocaine on somewhere close to I-75 (30-45 minutes before getting to Shands). Jacob was half-sleeping and was being a complete moron, but it was comical and he got the job done!

We arrived at Shands around 8:00am and proceeded to the 4th floor Peds lab. I had heard about all of the pretty girls that Jacob interacts with during his infusions, and I must say, I was questioning his vision when we walked in the lab! Jacob signed in and was taken for vitals almost immediately. I followed him to a little lab room where they measured and weighed him (sans the dirty boots that he refuses to clean because they give the impression that he’s a die-hard hunter!). He weighed 117 lbs, I think, and he attributed it to the whole medium pizza he ate the night before when his GG and Papa Grimes took him out to eat at The Red Elephant. Tammy was able to chill with Gavin while he woke up and watched some Mickey Mouse Clubhouse, and then we were taken to the infusion lab (step #3). I was informed that Jacob had a favorite chair already, which he claimed, and we got situated for port access and the day’s festivities. The nurse did bloodwork, accessing his port, and we waited for the results so the chemo could begin.

Not to minimize the horrible nature of the visit for Jacob or for any of the parents and children that have to come to this lab, but the facilities were really nice and the staff was incredibly helpful and cheerful. By now I’m sure it’s been captured in this blog, but Jacob had his own flat screen and PS3 to play and a list of DVDs and games to choose from. Though the facilities weren’t very accommodating for a group of four (Tammy and Gavin hijacked an empty seat for a good portion of the morning while Jacob and I watched some Sportscenter and played games… another story entirely), we were able to make do and it was encouraging to see Jacob looking at least semi-confident in his surroundings. I observed mostly, and it seems like he has the procedure down. That’ll be helpful if and when he and I make the trip without Tammy. Oh, and it was at this point I stopped questioning Jacob’s vision with regards to the nurses!

Step #4 passed (signing paperwork and verifying… everything!), and I watched and pretty much just enjoyed the time with Jacob. Dr. Smith’s nurse came to talk to Jacob several times and an EXTREMELY happy girl came to make sure we were doing ok. I know it’s her job to be cheerful, but damn! I told Tammy later on that her home life had to be demonic! It would take every ounce of my being to be that happy for 8 hours a day. There would be nothing left in the happy tank. It was refreshing to know that there are good people who try every day to make the world easier for these kids. The long wait came next, which took up most of the appointment! The infusion lab has to wait on the results of the bloodwork before administering the chemo. It’s during this time that we played PS3, colored and did stickers with Gavin, and did most of the people-watching. The lab was filling up quickly. Jacob and I played Little Big Planet 2 and NBA Street for a long time, which, at some points, was like pulling teeth! It is my nature to want to beat things. To play to win. Always. Jacob isn’t that way, and that may be a good thing. But watching an hour of a basketball video game in practice mode drove me CRAZY! I guess that’s one of my quirks as much as I think it’s one of his. Tammy was able to have a conversation with another mom that she’s seen in previous appointments… at least in small increments, between chasing Gavin around the floor! As sad of a situation as it is, it wasn’t as somber as I had imagined. Everyone, including the other parents and children, were tackling their situations with smiles and positive attitudes. It was inspiring at times.Finally, at around 11:15, the “Cadillac” came in. I guess each infusion that Jacob receives costs a small fortune, so each time he goes, he’s putting the price of a Cadillac into his port. Wish we could pull it out of the other end! Jacob has tolerated the chemo very well with only mild side effects, so the nurse set him up to receive the Avastin over 30 minutes. The drips, well, dripped, and before I knew it, the nurse was hanging saline. Once a small amount of the saline passed, the nurse came to remove the access and dismiss Jacob. In a stunning display of self-advocation (which, for those of you that know Jacob’s tendencies at his appointments, NEVER HAPPENS!), he told the nurse that she needed to hold his port down while removing the access so as not to hurt him. Tammy was shocked and proud that Jacob finally stood up for SOMETHING! A proud mother is a great thing! Jacob was dismissed and we were ready to pack this show up. Step #5 complete!

Food is one of Jacob’s pleasures (and I guess mine too J ), so we had already discussed lunch prior to coming. Mom and Dad gave us Living Social (Groupon-like) gifts to Schlotzky’s Deli. We were going, and luckily it was located north of Shands, so it was on the way back home. We were able to see a little bit of Gainesville that I had never seen. I never realized that the city is as big as it is. We went from SW 34th to NW 40-something, so it was a little drive. Jacob ordered a turkey-bacon club, I got the turkey smoke cheesy, Tammy decided to try the turkey original and Gavin got a pizza. The food was delicious (for Jacob and I, Tammy and Gavin weren’t as impressed) and the only disappointing thing for Jacob was that we were a long way from his Dairy Queen Blizzard. Next time, Big Money. Next time. We made it home in time to get Brie from school and take her to art, so everything worked out as we had hoped.

It was an eye-opening experience that I was glad to be a part of. It will be a part of Jacob’s life for the next 10 months or so, so I figured it might as well be something that we’re all at least comfortable with, procedure-wise. Jacob and I will be going through my PS3 games and donating some of the games we don’t play to Shands so that other kids can enjoy them (they were passing around a list for children to write down things they would like to have there). As much as I dislike anything blue and orange, Shands is doing great work. Scheduling is a nightmare, wait times are atrocious, but ultimately, things get done. The answers may not be what we hope, but there are answers. And sometimes, that’s all that is needed. So we’ll watch a few Rays games, work on finishing up school and put smiles on for the next appointment, because, quoting Buster Olney, “today will be better than yesterday.”



I LOVE my boys!!!, tam



Video EEG



Before EEG hook up


Grandma Poucher called me this afternoon to ask me how Jacob was doing and if we had the results from his Video EEG yet. I realized I needed to finish my blog post that I started last week about our recent overnight stay at Shands. Thank you for calling and checking on Jacob, Grandma!



When I started to write this post last Thursday I was so happy to be able to write that Jacob doesn't have to go back to Shands for two weeks!! Now, it’s a week away, but I am still thankful Jacob is getting a little break from the hospital and doctors.


Two weeks ago I spoke with both Dr. Asthagiri (NIH neurosurgeon) and Dr. Andrade (Shands peds neurologist) about Jacob having more moments of mumbling and not finishing his sentences and looking spaced out. Both doctors suggested Jacob have a three to five day in-patient Video EEG at Shands Hospital. The scheduling nurse called me on Wednesday, two weeks ago today and informed me that there were not any openings until July. So we scheduled Jacob for July 5th and his name was put on a waiting list; if a cancellation came up they would call us. Thursday evening, April 28th, I got a call that a bed was open for Jacob for Friday morning. Really short notice, I know, but I was relieved that Jacob was going to have the VEEG done and we were going to get it over with. I was happy also that two of the days would be over the weekend and TD would be off work and able to care for Gavin. So we packed up and headed to Gainesville Friday at 6:30 am. The thirty minutes I over-slept made a huge difference on I-10. The sun blasted Gavin before we could get onto I-75 and he was not a happy passenger. Not to mention he was still feeling like crap from the MMR vaccination the week before. Jacob and I, with Gavin and our overnight bags in tow, checked in at admissions, caught 15 minutes of the royal wedding rewinds and were sent up to a room on the fourth floor in Shands Hospital Pediatrics by 9:00 am. We were greeted by housekeeping, Jacob's RN for the day and Child Life. The hospital room was intimidating. Since patients are taken off their seizure medications while being studied, the bed rails are heavily padded and there are step by step instructions on how to best handle a patient having a seizure posted behind the bed. There was a globe on the ceiling to the left side of the room where a camera and mic were installed to record and watch Jacob at all times. I was informed I was not to leave Jacob without asking someone to sit with him in my place. Jacob, Gavin and I spent the next five hours hanging out in this very small room. Child Life brought several items to Jacob's room to entertain Jacob and Gavin, including a Nerf basketball set, Bionicals, Connect four, toy dinosaurs and mega blocks. Jacob brought his Xbox game system from home to play with and was given an unopened K'nex octopus to put together. I thought it was a bit ridiculous that we waited five hours for Jacob to be hooked up to the VEEG, especially since Dr. Andrade and the resident had come in around 10:00 am and put all the orders in. The next few hours (well, really the entire weekend) went by very slow. We played, talked and watched TV. Finally at noon the EEG tech team came in to hook Jacob up. It took two long hours. I was very proud of Jacob for sitting so still and patient while they marked, scrubbed and glued probes to his head. They did a test read and after re-doing several of Jacob's leads they wrapped his head with gauze, taped it down and covered the long wires with a gauze-like sock connected to a small machine in a pouch with a long strap for him to put over his shoulder and carry around. Even though it all seemed portable, Jacob was still connected to a long power cord attached to the wall electrical plug. Before the tech left he showed me the "panic" button for me to push if Jacob had any unusual behavior or if he had a seizure.


I was happy and sad to see TD and Brie come in that evening around 10:00 pm. I was happy they had made it to Gainesville safely, but TD had come to scoop up Gavin for the next few days and I was upset about being away from him for so long. Until that weekend I had only spent one night away from Gavin in his two years and it was because I was in the hospital and unable to be at home with him. I was crushed about not being able to be everywhere I wanted to be for all three of my children. TD had offered to spend the weekend at the hospital with Jacob, but I decided I would worry much more about Jacob at the hospital than Gavin with TD and Brie and family in St. Pete. Jacob did invite his dad on Thursday night to come and spend the weekend with him after I checked him in and answered all of the medical questions. Jacob was crushed that even though it was his dad's weekend to spend with him, he declined coming to the hospital. Jacob and I were also very sad because we had to miss Brie's Art show, but I am so proud of her. She took third place for both of the beautiful pieces she chose to enter in the show. TD took a lot of nice pictures so I was still able to share in the experience, only from a distance. TD and Brie shared with us the details of the show and who showed up to support her (thank you Nana, Papa and GG Grimes) and what they had for dinner. Then they left. Gavin was so sick of being in the hospital room and I had been telling him all day that daddy and sissy were coming to rescue him. He was ready to jet as soon as he saw them. At this point I was exhausted, but since Jacob had done very little all day and slept all the way to Gainesville, he wasn't tired so we stayed up and watched movies. I can't remember which night we watched which movies but Jacob got to see White Men Can't Jump for the first time and Con Air (twice) all the way through for the first time. We watched some hilarious (but crude) Comedy Central stand up. Dennis Leary, I love you, but you are so foul! We also watched Major League and no cartoons for once in a long time. I slept like crap Friday night. The peds floor is very loud. Constant machines beeping and there was a lot of commotion around one of Jacob's neighbors room through out the night. I think the young boy was having active clinical seizures. The nurses came in often to check vitals and ask us how Jacob was doing and we had to have a light on all night to make it easier to video record. He slept most of the night facing away from the camera though. The nutrition staff brought in breakfast at 7:00 am both mornings. No matter what time Jacob and I go to bed, we are not early morning people so we went back to sleep in hopes to get a few consecutive hours of sleep. No such luck. At 9:00 am Saturday morning I was awakened by the voice from above asking me to check on Jacob. I was wondering if something was wrong or if they were just having a staff change. Jacob seemed fine to me and woke right up. The tech came back over the speaker and told Jacob he could go back to sleep. Yeah right. All done sleeping. After breakfast, coffee and a little over an hour of working on Boy Scout assignments, Jacob and I spent the day playing games and piddling. I worked for many, many hours building Jacob's K'nex motorized octopus (and I do mean MANY HOURS!). I was determined to finish it for Jacob, and I did, much later in the day! I couldn't wait to get batteries in it and see if I had put it together right. I bet it was very humorous for the EEG techs to watch me trying to figure out the directions, put pieces together and then take them apart, trying to get the thing together straight. I was very proud when I was done. I thought the feeling of accomplishment I felt must be similar to how TD felt the week before, finishing Gavin's play set (only mine was on a much smaller scale!). After all, the octopus started off as 550 pieces and the play set was in a gazillion pieces. Oh, and Jacob really liked his techs! A big black guy sat with him and compared Zig Tech shoes and the woman tech had a sister that lives in Tallahassee. They were all super nice (maybe because they’re being filmed… I don’t know). One of them even remembered us from September 2009 when Jacob has his craniotomy! Anyways… Dr. Andrade didn't come in until 2:00 Saturday afternoon. I informed him that Jacob had not had any of his spells since we had been in the hospital. He talked to us about the readings from the last 24 hours. He said the EEG read a lot of misfiring and brain activity that leads up to seizures, but no clinical seizures, except for the one instance that morning. The voice in the sky had asked me to wake Jacob up because the EEG showed he was having a seizure. It only lasted for 20 seconds though. Dr. Andrade said Jacob's misfiring and abnormal brain activity is worse at night when he is sleeping. I found that very scary and starting wondering how we’ll be able to watch over him while he is sleeping and we are sleeping? Is there a machine I can hook him up to or a companion dog that detects seizures? Dr. Andrade said he would return Sunday afternoon and that Jacob may be able to go home then given that they were successful in recording the seizure activity.

So Saturday afternoon and evening went about the same as Friday had gone. Jacob and I did play bingo… and won! That was fun. They brought around cards with markers and everyone opened their doors and listened to the loud speaker as other kids and staff called out the numbers and letters. It was fun to yell bingo at the top of our lungs. They brought in the prize cart and Jacob asked the nurse to please give his prize to one of the other children, that he didn't need anything and he knows he’s older and that prizes are fun for the younger kids. We sat with our door open for a while that evening. Not being able to leave the room was hard. Everytime Jacob got up to use the restroom he would go to the window and look out for a bit. It seemed like we had been there for weeks, not days. Listening to and watching the kids coming by the door in the wagons or in the push cars was sweet and sad all in the same emotion. These kids were laughing and singing, but still so sick. The child that broke my heart the most was a little girl who couldn't have been more than seven years old and her entire left side of her face had been taken over by a tumor. As she peered in our room when she walked by with her mom slowly. I had to smile through the tears that were about to burst out of my eyes. I was glad Jacob didn't see her, his heart would’ve hurt too. The night was full of more TV and video games and Jacob took a bird bath, brushed his teeth and changed his clothes. He brought several button down shirts. Once again, Saturday night I was exhausted. Not from any activity, but just from lack of sleep. Unless you count being a slave activity... just kidding. Sort of. I fell asleep while watching TV with Jacob. The chair that they give guests to sleep in sucks, but at that point I could’ve slept standing up. Jacob stayed up late again, until around 3:00 am, and I know he watched Con Air for a second time and the movie Deep Blue. I woke up several times to ask him if he needed to go to the restroom or needed a drink or whatever and he was very entranced by the movies. Around 4:00 am the PCA came in to check on Jacob and he was finally sleeping well. Soon after that it seemed it was time to get up. I was anxious to hear how Jacob's EEG had looked while he was sleeping Saturday night and wondered if we were going home. I can admit that I was very grumpy Sunday morning and completely put out because the coffee shop was closed on Sunday, though I was extremely happy to see my mom and dad who made the trip to Gainesville to see Jacob and me for the day. Thank you for making our day so much better!! Jacob hadn't had any spells of loss of speech or anything like what Brie and I witnessed at home recently while we were at the hospital. I couldn't help but think it was because he wasn't doing anything. He was sleeping when he wanted, eating meals like clock work and snacks like ice cream and animal crackers all day. He wasn't dehydrated. The nurses brought him new Gatorades every hour. His physical activity was limited. I thought they would sleep-deprive him or induce hyperventilation or something, but they didn't.


I guess by noon on Sunday they had all the info they needed because Jacob was told he would be released. Dr. Andrade spent a long time talking with us. He tried to explain to me why Jacob's misfiring is more active at night and he did his best to explain to me how seizure medications work. He changed Jacob's seizure medications from Trileptal to Tegratol. Jacob has been on the Trileptal for at least eight years and he could have built up a resistance to it. Dr. Andrade said that a lot of the abnormal misfiring in Jacob's brain is coming from the right frontal lobe area, but Jacob also has abnormal activity originating from the center left. He said the misfiring can cause the speech delays and mumbling and other odd behaviors. He said Jacob could have a hard time retaining and remembering things and it could make learning considerably difficult. Dr. Andrade gave me Jacob's new prescription and a lab sheet to have his liver function checked in a few weeks and said we could go home. Two hours later, the EEG techs came in and unhooked Jacob. He took a shower and we were free. Daddy and Mama stayed with us the entire time and made sure we got on our way safely (TD and Sally were having differences of opinions on Friday night!). After a stop at Starbucks, Jacob and I rode home with the windows down, mostly in silence (other than the “woohoos” after getting on I-75). We were pretty much out of woods! I love to spend time with Jacob and I am glad I was there with him, but I need to be outside daily and I missed Brie, Gavin and TD. I was very happy to be headed home. So we said goodbye to Shands for a few days. Jacob was scheduled to return on Wednesday for his infusion.


TD, Brie and Gavin had a great time in St. Pete and Gavin survived just fine with out me. They celebrated Presley's 2nd birthday, went to the beach and spent time with family.


I am curious to hear what Dr. Asthagiri (NIH) thinks about the VEEG findings. We were also told the brain activity they recorded over the weekend was commonly seen in NF2 patients. So the bottom line is - Jacob is having a lot of brain activity that leads to seizures, but not the seizure. Jacob is at risk of having clinical seizures. Jacob's medicine has been changed and since we have been home I have not witnessed any odd spells. Jacob will continue his Avastin treatments every other week. He has an MRI in June, an Eye appt in June, an Audiogram and ABR testing in June and will return to see Dr. Andrade the first week in July. Jacob will return to NIH for MRIs and doctors appointments in August. I am looking into having him tested for low blood sugar. It seems sometimes that his tremors could be related to lack of food. Jacob and I had his IEP meeting this week for high school, so we are getting ready for that transition. And on a side note, I think it’s terrible that the government has gone so far with cuts that Jacob will not be able to see a vision teacher in Leon County but once a month. Thank you, Rick! Back to summer plans… There are summer camps the kids are looking forward to and lots of fun activities (swimming lessons, lifeguard classes and some fishing, I’m sure!). We are all happy to have a break from school for a few months! I love the summers with my kids!


I hope that when TD edits this blog post he will write about Jacob's fourth Avastin treatment he took us to last week. Having him with us was so nice. It was fun to have him there and to watch him and Jacob nit pick about how to play video games and both get excited about what's for lunch is too cute? We all think we have jokes, but having all three boys together is always entertaining and an adventure.


 


After EEG hook up
The jokes really started after
Jacob sent this photo to TD.
TD told Jacob he looked like a "Sheik"
and Brie agreed that Jacob was wearing
a turban.  I told him it looked like
a pony tail.  The techs told him he did a great
job keeping all of his leads on. 
They came in on Saturday and moved the
leads to different places to prevent
skin break down.  Ouch!




The K'nex octopus worked when we got it
home and TD put batteries in it!!!