Thursday, February 4, 2010
Thursday, December 10, 2009
Jacob's 1st trip to NIH Day 4
Jacob's 1st trip to National Institute of Health
Day 4
Wednesday, December 2, 2009
Morning came very quickly. I woke up not feeling very rested at all. Our room was very nice, very quiet, and the beds, for the most part, comfortable. There’s just no place like home.
Jacob’s 1st appointment of the day was at the Eye Clinic, with Ekaterini Tsilou, MD. We checked in on the 11th floor and then were sent down to the 10th floor for an eye exam and vision screening. It was the same song and dance Jacob has done 100 times before, but the results this time left me pleasantly surprised and extremely happy. During the 1st round of tests the tech turned on a lighted box, which looked a lot like an x-ray viewer, except it had rows of letters and numbers on it. It was bright white with bold black letters. He asked Jacob to read the smallest line possible. Jacob looked at it for a minute and started to read. I wish I could have seen my own reaction. Not only was I shocked that Jacob could read any of it at all, but blown away at how small the line was that he did read. Jacob and I exchanged looks. I asked Jacob, “Seriously? Are you guessing?” He was like “What?” He hadn’t even realized his peripheral vision had improved so much. A month after surgery his vision had only improved from 20/400 to 20/200. Now, WOW! What a difference. I had prayed for Jacob to not loose any more vision and for the surgery to at least help him keep what he had left. My mom on the other hand has told me many times she is praying for Jacob’s sight to return to him completely in his left eye. God was meeting us in the middle. Jacob’s vision is now at 20/63. Answered prayers! Thank you Lord! Thank you, Dr. Pincus and Dr. Lewis. Jacob still has to take a minute to look at whatever he is trying to see and the black on white contrast makes a huge difference, but the improvement is clearly there. The meningioma is still on the optic nerve, but obviously Jacob’s optic nerve is truly more “happy,” as Dr. Pincus worded it, and it is sending much better signals. This news made my day!
After the eye exam, the tech took Jacob to do an automatic fielding test and sent us back upstairs. We met with Dr. Tsilou and went over Jacob’s eye medical history. It is the longest and most detailed of all his medical information. Jacob then had his eye numbed, pressure checked, pupil dilated and photos of his optic nerve taken. Jacob’s pressure was good, but his optic nerve is still showing a little paleness. The rest of his eye looks healthy and the drusen was not seen. The doctor also measured how far Jacob’s left eye ball was sticking out from its socket. She said that meningiomas on the optic nerve have been known to cause the eye to protrude. She said they would watch it and Jacob’s measured pretty normal. We were done with the Eye Clinic and it was time to go to the Ear, Nose and Throat Clinic and see Jeff Kim, MD.
Once again we didn’t wait long. Jacob was put right into a room. Dr. Kim came in and asked us the same questions we had been answering the past few days. He looked at Jacob, his skin, his tongue, Jacob’s nose and his ears and with Jacob’s permission took pictures of Jacob’s visible fibromas and café au lait spots. He informed us that the once thought cyst on Jacob’s tongue is not a cyst, but a fibroma. Dr. Kim went over Jacob’s scan and confirmed that Jacob’s vestibular schwannomas (VS) or as I usually call them, acoustic neuromas (ANs, or simply the ear nerve tumors) are growing. The right side is around 9 mm and the left around 7 mm. Dr. Kim believes that there is another tumor, along with the ones already seen, on the right side inside the inner ear. This was not good news. He went on to explain to me that the balance nerve, the facial nerve and the hearing nerve are all in the same area. They believe the VS start on the balance nerve and then take over the other nerves when they start growing. He discussed why they do surgery and some of the different results. Most patients lose hearing after a VS removal surgery is done on that side. If the hearing nerve can be saved during a VS removal then a cochlear implant (CI) can be placed. A CI is a surgically implanted electronic device that provides a sense of sound to a person who is profoundly deaf or severely hard of hearing. The cochlear implant is often referred to as a bionic ear. We also talked about an Auditory Brainstem Implant (ABI). The ABI, like the CI, replaces part of the hearing mechanism that is not working properly. Whereas the CI is implanted in the cochlea and replaces the function of defective cells, the ABI is implanted in the brainstem, and replaces the function of a defective auditory nerve. It is used most often in patients who become deaf due to NF2, because NF2 causes tumors on the cranial and spinal nerves. Removing those tumors often requires severing the auditory nerve, which destroys the hearing in the affected ear. Bilateral surgeries can destroy the hearing in both ears. Traditional CIs are ineffective in these cases, because they rely on the auditory nerve to transmit signals from the cochlea to the brain. But the ABI bypasses the auditory nerve to inject acoustic information directly into the brain.
Jacob’s case is complicated because of the schwannoma growing at the bottom of Jacob’s brainstem/top of his spinal cord and because of his visual loss. They are not recommending any surgery at this time, but will be watching them closely. The tumor on the right side in Jacob’s inner ear can not be removed or debulked with out taking his hearing. More bad news.
Later, Jacob had vestibular balance testing – which was really cool. We also had a very nice dinner at the Double Tree Hotel this night. I will write about both of these later. I have to run for now, but I didn’t want to wait any longer to post the good news about Jacob’s vision.
Day 4….to be continued!
Day 4
Wednesday, December 2, 2009
Morning came very quickly. I woke up not feeling very rested at all. Our room was very nice, very quiet, and the beds, for the most part, comfortable. There’s just no place like home.
Jacob’s 1st appointment of the day was at the Eye Clinic, with Ekaterini Tsilou, MD. We checked in on the 11th floor and then were sent down to the 10th floor for an eye exam and vision screening. It was the same song and dance Jacob has done 100 times before, but the results this time left me pleasantly surprised and extremely happy. During the 1st round of tests the tech turned on a lighted box, which looked a lot like an x-ray viewer, except it had rows of letters and numbers on it. It was bright white with bold black letters. He asked Jacob to read the smallest line possible. Jacob looked at it for a minute and started to read. I wish I could have seen my own reaction. Not only was I shocked that Jacob could read any of it at all, but blown away at how small the line was that he did read. Jacob and I exchanged looks. I asked Jacob, “Seriously? Are you guessing?” He was like “What?” He hadn’t even realized his peripheral vision had improved so much. A month after surgery his vision had only improved from 20/400 to 20/200. Now, WOW! What a difference. I had prayed for Jacob to not loose any more vision and for the surgery to at least help him keep what he had left. My mom on the other hand has told me many times she is praying for Jacob’s sight to return to him completely in his left eye. God was meeting us in the middle. Jacob’s vision is now at 20/63. Answered prayers! Thank you Lord! Thank you, Dr. Pincus and Dr. Lewis. Jacob still has to take a minute to look at whatever he is trying to see and the black on white contrast makes a huge difference, but the improvement is clearly there. The meningioma is still on the optic nerve, but obviously Jacob’s optic nerve is truly more “happy,” as Dr. Pincus worded it, and it is sending much better signals. This news made my day!
After the eye exam, the tech took Jacob to do an automatic fielding test and sent us back upstairs. We met with Dr. Tsilou and went over Jacob’s eye medical history. It is the longest and most detailed of all his medical information. Jacob then had his eye numbed, pressure checked, pupil dilated and photos of his optic nerve taken. Jacob’s pressure was good, but his optic nerve is still showing a little paleness. The rest of his eye looks healthy and the drusen was not seen. The doctor also measured how far Jacob’s left eye ball was sticking out from its socket. She said that meningiomas on the optic nerve have been known to cause the eye to protrude. She said they would watch it and Jacob’s measured pretty normal. We were done with the Eye Clinic and it was time to go to the Ear, Nose and Throat Clinic and see Jeff Kim, MD.
Once again we didn’t wait long. Jacob was put right into a room. Dr. Kim came in and asked us the same questions we had been answering the past few days. He looked at Jacob, his skin, his tongue, Jacob’s nose and his ears and with Jacob’s permission took pictures of Jacob’s visible fibromas and café au lait spots. He informed us that the once thought cyst on Jacob’s tongue is not a cyst, but a fibroma. Dr. Kim went over Jacob’s scan and confirmed that Jacob’s vestibular schwannomas (VS) or as I usually call them, acoustic neuromas (ANs, or simply the ear nerve tumors) are growing. The right side is around 9 mm and the left around 7 mm. Dr. Kim believes that there is another tumor, along with the ones already seen, on the right side inside the inner ear. This was not good news. He went on to explain to me that the balance nerve, the facial nerve and the hearing nerve are all in the same area. They believe the VS start on the balance nerve and then take over the other nerves when they start growing. He discussed why they do surgery and some of the different results. Most patients lose hearing after a VS removal surgery is done on that side. If the hearing nerve can be saved during a VS removal then a cochlear implant (CI) can be placed. A CI is a surgically implanted electronic device that provides a sense of sound to a person who is profoundly deaf or severely hard of hearing. The cochlear implant is often referred to as a bionic ear. We also talked about an Auditory Brainstem Implant (ABI). The ABI, like the CI, replaces part of the hearing mechanism that is not working properly. Whereas the CI is implanted in the cochlea and replaces the function of defective cells, the ABI is implanted in the brainstem, and replaces the function of a defective auditory nerve. It is used most often in patients who become deaf due to NF2, because NF2 causes tumors on the cranial and spinal nerves. Removing those tumors often requires severing the auditory nerve, which destroys the hearing in the affected ear. Bilateral surgeries can destroy the hearing in both ears. Traditional CIs are ineffective in these cases, because they rely on the auditory nerve to transmit signals from the cochlea to the brain. But the ABI bypasses the auditory nerve to inject acoustic information directly into the brain.
Jacob’s case is complicated because of the schwannoma growing at the bottom of Jacob’s brainstem/top of his spinal cord and because of his visual loss. They are not recommending any surgery at this time, but will be watching them closely. The tumor on the right side in Jacob’s inner ear can not be removed or debulked with out taking his hearing. More bad news.
Later, Jacob had vestibular balance testing – which was really cool. We also had a very nice dinner at the Double Tree Hotel this night. I will write about both of these later. I have to run for now, but I didn’t want to wait any longer to post the good news about Jacob’s vision.
Day 4….to be continued!
Wednesday, December 9, 2009
1st trip to National Institute of Health DAY 3
Jacob's 1st trip to National Institute of Health
Day 3
Tuesday, December 1, 2009
I was so tired from not sleeping the night before and I had a very hard time waking up.
Today Jacob was to have a MRI of the brain, spine, and brachial plexus under anesthesia with and without contrast.
We were supposed to be at the Children’s Day Hospital at 7:00 am to get ready for Jacob’s 3 hour MRI under anesthesia, but we didn’t get there until 7:20 am. I’m not sure why I thought I would be able to get us all up and ready in only 20 minutes. Jacob couldn’t eat or drink so it only took 40 minutes, but regardless we were still late. The nurses didn’t seem phased at all that we were running behind and welcomed us right into our room. Jacob was a nervous wreck about having an IV placed and wondered how many times it would take them to get it right. (Sometimes at Shands it can take 3 or 4 times for them to get it in.) Jacob’s nurse got the IV in on the very 1st stick, on the very 1st try, quickly with very little pain!! They didn’t even use any numbing agents. Jacob and I were so happy that was over and went so well. Jacob changed into some very fabulous paper hospital pants and we walked from the Day Hospital to MRI Imaging. We only sat for a few minutes waiting for them to take him back to the MRI room he would be in for the next few hours. I met with the Anesthesiologists doctor and completed paperwork and a long questionnaire. Since Jacob’s craniotomy, he now has a small amount of titanium hardware in his skull and they have to ask you a thousand more questions than usual. They put Jacob on the table awake and G and I stayed with him until he fell asleep. Jacob was only given an IV anesthesia called Propofol anesthesia and no breathing anesthesia. It only took a minute for Jacob to fall asleep after I kissed him and wished him sweet dreams. It is always hard to watch them put Jacob under anesthesia and walk away. I am left at that point to be alone, without Jacob and think about his NF2 and why he is having a MRI. It breaks my heart to see him lying helpless on the table bed with the huge machine surrounding him and monitors and such attached to him. It’s hard to explain, but is not a sight I wish for any mother or parent to have to see.
The MRI started at 8:10 am. The doctor taking care of Jacob told me to come back at 11:00 am and if anything changed he would call me. Gavin and I went back to the Inn. I ate breakfast. Then I took G outside to play on the outside playground. He loved the baby swing, but because everything else was so wet from the rain the day before he wasn’t able to get down and crawl around. We sat by the huge Holly tree and watched all the birds flying in and out of it. They were singing and making a lot of noise. G and I found it very entertaining. We went back to our room so I could fold laundry from washing the night before and put G down for a nap. I ended up falling asleep too, but for only 25 minutes. I was very upset when I got back to MRI at 11:00 and the doctor told me they would be taking 45 more minutes of scans. G and I could have been sleeping all that time!! The doctor apologized for not calling me. He also informed me Jacob would not be coming back that evening. Jacob was originally scheduled for a second brain MRI that evening without sedation and without contrast. They usually do this for comparison. The head Radiologists decided during Jacob’s scan that they would go ahead and do all the scans at the same time and didn’t need ones later. I was happy it could be done this way. I was thinking about our afternoon and what we would be able to go and do..Maybe the Washington, D.C Smithsonian Zoo!! Gavin and I waited and when Jacob was done having the MRI we followed him up to Anesthesia recovery. He was sleeping so peacefully. I kissed him again and told him I would be waiting for him to wake up. G and I sat in the waiting room for a very long time it seemed and we were finally called back. Jacob was still sleeping. He continued to sleep for over an hour, even with G and me messing with him. He finally woke up and decided he was very hungry and super grumpy. After he ate some crackers and juice he was sent back down to the Pediatric Day Hospital where we had started that morning. A very nice nurse had reordered Jacob’s food request from that morning: Cheese burger, French fries, and a milkshake. It was very late in the afternoon at this point and the original order from 11:00 am had gotten cold. The nurse ordered 2 of everything (3 cheese burgers) so Jacob and I sat and ate together. Jacob said very little and was more irratated than usual after anesthesia. I knew at that point there would be no trip to the Zoo that afternoon and that Jacob had been given a little too much medicine. Jacob insisted to his nurse that he was ready to go, so she made him walk around, use the bathroom and put on his pants alone to prove he was fit to be released. At 3:30 pm we made our way back to the Inn. I had to make Jacob lay down for a bit. He still felt like he was 10 feet tall, but was mouthy and unsteady. We all took a nap.
Tuesday evening turned out to be a nice night. A nearby Cancer center came and made Tacos for the families and once again there was fruit and yummy dessert. We sat and ate with a nice family from Tennessee. Their 3-year-old son’s name is Corbin and Gavin enjoyed watching him. Jacob played video games with David and Corbin’s dad until late and Gavin and I went down stairs to play in the under the stairs soft block room. We also met Viola, the Inn’s beautiful Golden Retriever Tuesday night. We sat and pet her for a long time. She enjoyed licking Gavin’s left over dinner from his face.
I can assure you that I had no trouble falling asleep Tuesday night, Gavin stayed in the bed with me and we didn’t wake up until early morning.
Another day down and one more day closer to getting home to Tallahassee. I was ready for Gavin, Jacob and I to be back with Brie, Thomas and Grissom.
Wednesday we would have an appointment at the Eye Clinic, an appt with the Ear, Nose, and Throat doctor and Balance Vestibular testing.
Day 3
Tuesday, December 1, 2009
I was so tired from not sleeping the night before and I had a very hard time waking up.
Today Jacob was to have a MRI of the brain, spine, and brachial plexus under anesthesia with and without contrast.
We were supposed to be at the Children’s Day Hospital at 7:00 am to get ready for Jacob’s 3 hour MRI under anesthesia, but we didn’t get there until 7:20 am. I’m not sure why I thought I would be able to get us all up and ready in only 20 minutes. Jacob couldn’t eat or drink so it only took 40 minutes, but regardless we were still late. The nurses didn’t seem phased at all that we were running behind and welcomed us right into our room. Jacob was a nervous wreck about having an IV placed and wondered how many times it would take them to get it right. (Sometimes at Shands it can take 3 or 4 times for them to get it in.) Jacob’s nurse got the IV in on the very 1st stick, on the very 1st try, quickly with very little pain!! They didn’t even use any numbing agents. Jacob and I were so happy that was over and went so well. Jacob changed into some very fabulous paper hospital pants and we walked from the Day Hospital to MRI Imaging. We only sat for a few minutes waiting for them to take him back to the MRI room he would be in for the next few hours. I met with the Anesthesiologists doctor and completed paperwork and a long questionnaire. Since Jacob’s craniotomy, he now has a small amount of titanium hardware in his skull and they have to ask you a thousand more questions than usual. They put Jacob on the table awake and G and I stayed with him until he fell asleep. Jacob was only given an IV anesthesia called Propofol anesthesia and no breathing anesthesia. It only took a minute for Jacob to fall asleep after I kissed him and wished him sweet dreams. It is always hard to watch them put Jacob under anesthesia and walk away. I am left at that point to be alone, without Jacob and think about his NF2 and why he is having a MRI. It breaks my heart to see him lying helpless on the table bed with the huge machine surrounding him and monitors and such attached to him. It’s hard to explain, but is not a sight I wish for any mother or parent to have to see.
The MRI started at 8:10 am. The doctor taking care of Jacob told me to come back at 11:00 am and if anything changed he would call me. Gavin and I went back to the Inn. I ate breakfast. Then I took G outside to play on the outside playground. He loved the baby swing, but because everything else was so wet from the rain the day before he wasn’t able to get down and crawl around. We sat by the huge Holly tree and watched all the birds flying in and out of it. They were singing and making a lot of noise. G and I found it very entertaining. We went back to our room so I could fold laundry from washing the night before and put G down for a nap. I ended up falling asleep too, but for only 25 minutes. I was very upset when I got back to MRI at 11:00 and the doctor told me they would be taking 45 more minutes of scans. G and I could have been sleeping all that time!! The doctor apologized for not calling me. He also informed me Jacob would not be coming back that evening. Jacob was originally scheduled for a second brain MRI that evening without sedation and without contrast. They usually do this for comparison. The head Radiologists decided during Jacob’s scan that they would go ahead and do all the scans at the same time and didn’t need ones later. I was happy it could be done this way. I was thinking about our afternoon and what we would be able to go and do..Maybe the Washington, D.C Smithsonian Zoo!! Gavin and I waited and when Jacob was done having the MRI we followed him up to Anesthesia recovery. He was sleeping so peacefully. I kissed him again and told him I would be waiting for him to wake up. G and I sat in the waiting room for a very long time it seemed and we were finally called back. Jacob was still sleeping. He continued to sleep for over an hour, even with G and me messing with him. He finally woke up and decided he was very hungry and super grumpy. After he ate some crackers and juice he was sent back down to the Pediatric Day Hospital where we had started that morning. A very nice nurse had reordered Jacob’s food request from that morning: Cheese burger, French fries, and a milkshake. It was very late in the afternoon at this point and the original order from 11:00 am had gotten cold. The nurse ordered 2 of everything (3 cheese burgers) so Jacob and I sat and ate together. Jacob said very little and was more irratated than usual after anesthesia. I knew at that point there would be no trip to the Zoo that afternoon and that Jacob had been given a little too much medicine. Jacob insisted to his nurse that he was ready to go, so she made him walk around, use the bathroom and put on his pants alone to prove he was fit to be released. At 3:30 pm we made our way back to the Inn. I had to make Jacob lay down for a bit. He still felt like he was 10 feet tall, but was mouthy and unsteady. We all took a nap.
Tuesday evening turned out to be a nice night. A nearby Cancer center came and made Tacos for the families and once again there was fruit and yummy dessert. We sat and ate with a nice family from Tennessee. Their 3-year-old son’s name is Corbin and Gavin enjoyed watching him. Jacob played video games with David and Corbin’s dad until late and Gavin and I went down stairs to play in the under the stairs soft block room. We also met Viola, the Inn’s beautiful Golden Retriever Tuesday night. We sat and pet her for a long time. She enjoyed licking Gavin’s left over dinner from his face.
I can assure you that I had no trouble falling asleep Tuesday night, Gavin stayed in the bed with me and we didn’t wake up until early morning.
Another day down and one more day closer to getting home to Tallahassee. I was ready for Gavin, Jacob and I to be back with Brie, Thomas and Grissom.
Wednesday we would have an appointment at the Eye Clinic, an appt with the Ear, Nose, and Throat doctor and Balance Vestibular testing.
Tuesday, December 8, 2009
1st Trip to NIH (Day 1 and 2)
Jacob's 1st trip to National Institute of Health
Day 1 and 2
Sunday, November 29, 2009
Up at 6:20 am....TD, Jacob, Brie, Gavin and I were off to the Tallahassee Airport, arriving at 8:05 am.
Mom and Dad met us at the airport to wish us well and watch us take off.
The Delta representatives were very nice. They helped me check in our baggage and get our boarding passes. I was very worried about getting on the plane with my precious boys and felt sick to my stomach. (Even though I have flown many times before) I was sad about leaving the other half of my family for a week, but I kept reminding myself it was for a great reason - the beginning of a new journey - a new phase in our war against NF2.
Getting through security was a pain. They checked Gavin's baby food and my water bottle, had to look through my backpack and Gavin's diaper bag and they made us take off our shoes. They don't even bother to let you go through with your shoes on anymore, they have you place them through the X-ray machine. The security officers had to look at all of our electronics and Jacob and I had to take off our jackets. I also had to fold up the stroller for x-ray. After all that we made it to the gate by 9:00 am. We boarded 1st at 9:10 am. Jacob and I were given the very 1st seats on at very small jet and we learned very quickly that our carryon bags were not going to fit under or over our seats. I thought that they could just sit at our feet, but I was wrong and almost lost it when confronted by the stewardess. I was very frustrated because Jacob was holding Gavin while I was trying to figure out where to put our things and Gavin was screaming. After the help of a very patient flight attendant and some rearranging of our stuff, our bags found places on the plane and we were on our way to Atlanta.
Gavin and Jacob were awesome. Jacob was nervous, but as soon as the plane took off and we were in the air Jacob was fine and even told me he thought take off was pretty cool. Gavin sat like a big boy in my lap, chewed on his toys, nursed and fell asleep. I couldn't of asked for better behaved boys. After being in the air for only 30 mins we landed in Atlanta....smooth flight and smooth landing. There was even a nice man (and his wife) who helped me by carrying G's stroller up the stairs into the airport. (Yes, that is how small our 1st plane was...it didn't even have a walk through.)
Atlanta airport was packed. We made our way from the D terminal to the A terminal. Jacob and G both liked riding the underground train. Jacob ate burnt pizza and I had bad coffee, only later to find that there was a Starbucks right by our next gate. Our walked from the train to the gate seemed long because we had so much crap, but we made it and found a nice spot to sit in front of the window. I fed Gavin his cereal and pears and let him get down, stretch his little legs and crawl around. Before I could even relax it was time to get back on a plane and be on our way to Ronald Regan Airport in Washington, DC.
The plane to DC was huge and completely full. We had more room to put our stuff, but were still squeezed in like sardines. The take off was much easier to swallow this time and the flight went by pretty fast. Gavin wasn't happy at 1st being restricted again, but gave in and repeated his same routine from the 1st flight. Jacob and I listened to music TD downloaded for us the night before and G slept. My arm felt like it would fall off from holding G by the time we were getting ready to land in DC and G woke up about 30 mins before we landed and graced us with a dirty stinky diaper. I figured if that was the worse thing I had to complain about regarding our flights I was very lucky.
Another smooth flight and landing was behind us. We had arrived at Ronald Regan National Airport in one piece. I hurried to the bathroom to change the dirty doody and then rushed to the baggage claim. I was determined to make the 3:00 pm shuttle. I was starving and pushing through with a horrible headache. The pressure from flying is rough on my head and ears. I was so relieved that we got everything done and were able to make the early shuttle.
The ride on the shuttle to NIH in Bethesda, MD was very nice after G stopped crying about being in his car seat again. Jacob and I tore into the bag of goodies Nana and Papa had given him. We ate all of the cheese, crackers, and summer sausage...also the brownie, and m & ms, only noticing the no food or drink sign after we were done. Looking out the window at the slate rocks on the edge of the rivers and the bare trees, the view looked just like winter should look. The houses were huge and beautiful. It was getting late in the afternoon and was very gloomy outside. I was ready for dinner, a hot shower and bed.
The Children's Inn was awesome! Our room was very nice with lots of space. It had two double beds, a desk, dressers, a Pack N Play for Gavin, TV and Wifi. There was even a sitting chair with an ottoman in front of a huge window. We had plenty of room for Gavin to play and a place to put the stroller and all of our stuff.
That night a church came and served dinner for all the families at the Inn. We ate hot dogs, hamburgers, salad and fruit. Jacob quickly made a friend, David, from Georgia and spent most of the evening playing games in the Teen Room with him. Gavin and I explored the Inn, stopping to play in the common areas built just for little ones. I did my nightly prep, getting Gavin's bag ready for the next day, lunch, diapers, wipes, toys, etc. I looked up all of Jacob's appointments, laid out our clothes, took baths, etc. I had to round Jacob up and make him come in at 11:00 pm - he was having so much fun, but our Monday was going to be busy.
Monday, November 30, 2009
I woke up at 3:45 am to feed Gavin and couldn't go back to sleep. I laid in bed, thinking, wondering how our first day at the huge National Institutes of Health would go. I woke Jacob up at 6:30 am and got Gavin and myself ready. We bundled up and decided we would walk up the hill to the Clinical Center instead of taking the shuttle. It was supposed to rain, but it was only 7:30 am and hard to tell how the weather would be for the day.
Our morning went very well. We didn't wait long for any of our appointments and everyone was very nice. From 7:30 am to 1:30 pm Jacob did the following: Admissions to NIH, Blood work, Outpatient work up, New Patient work up, Pre anesthesia, Audiogram and ABR testing. I also managed to squeeze in a visit to the Voucher office and we went to the Security Center to get our yearly badges. We did a lot of paper work and answering questions. Jacob was nervous about having blood taken and the many viles of blood they took from him, but the nurse was very good and didn't hurt him at all. As for his hearing appointments, they weren't anything he hasn't done before and Jacob even got to take a nap during the ABR testing. We learned during his hearing testing that he has had a slight drop in hearing on the right side, but at this point it isn't anything to be concerned about. (Jacob’s last normal Audiogram was in July of this year) Gavin was awesome during all of this - riding in his stroller, eating cheerios, walking around the chairs and couches, chewing on his toys and sitting in my lap. The NIH Clinical building is very large -the only thing I can compare it to is Florida State campus. It is very clean and decorated with what I consider to be modern art, but still warm and calming. It appears they put in a lot of thought to the decor. The architecture is also very modern and open. Everyone we came in contact with was polite, educated and appeared to know what they were doing. Our day of appointments went by very fast.
After having lunch in the cafeteria we went back to the Inn to regroup. Jacob and I decided we would take the Metro Subway into Washington, D.C as a trial run for later in the week. It was really cold and started to rain, but we went anyway. It didn't turn out to be a very pleasant trip. Even from the start. I was unable to find an elevator to take us down the 200 ft into the subway system. I had to fold up Gavin's very heavy stroller and hold it and Gavin down the very steep escalator. Trying to figure out how to buy tickets from a machine with a fussy baby was a task too. Once on the Metro I held Gavin until he fell asleep. The closer we got to D.C the more full the train became. We decided we would get off in Chinatown. While approaching the Chinatown stop the conductor came on over the intercom announcing a person had been hit by a train at the Chinatown station and to expect delays. When we exited the train people were running to see the accident, there were firefighters, and police officers all around. We held onto each other and made our way up to ground level. The weather was terrible. It was raining and cold. Jacob and I put our hoodies up and I covered Gavin with his blanket and put his skully on. Jacob had also brought an umbrella that I held over Gavin while pushing the stroller. Gavin decided he was miserable and who could blame him. I ended up carrying him most of the rest of the way so he wouldn’t cry. We tried to walk around, but the weather was too bad. Jacob was very excited to see the busy city, but agreed that it wasn’t good for us to be out in the cold rain. We ended up going into the Smithsonian to warm up and get out of the rain. Too bad it was the Museum of Art and didn't have anything super cool that Jacob wanted to see, other than an amazing covered courtyard. We walked back to the train. The admissions machine ate one of our tickets and I had to jump over the gate with the stroller and hand Gavin to Jacob after he went through.....the station was packed because of rush hour. It was a nightmare. People were pushing and we waited through 3 trains. Finally we made it back to the Inn and Jacob had an interesting story to tell about his 1st time on a subway in the big city.
We ordered take-out and it wasn't very good. I was excited that our groceries Gina had ordered for us would arrive soon (between 7 and 9). We got our groceries and repeated our nightly routine.
I was exhausted but very pleased with Jacob, Gavin and myself. We had survived our 1st day at NIH, the nasty weather and the DC Metro subway!
I was ready for some sleep and whatever Tuesday would bring.
(Will post Day 3 - 6 soon)
Day 1 and 2
Sunday, November 29, 2009
Up at 6:20 am....TD, Jacob, Brie, Gavin and I were off to the Tallahassee Airport, arriving at 8:05 am.
Mom and Dad met us at the airport to wish us well and watch us take off.
The Delta representatives were very nice. They helped me check in our baggage and get our boarding passes. I was very worried about getting on the plane with my precious boys and felt sick to my stomach. (Even though I have flown many times before) I was sad about leaving the other half of my family for a week, but I kept reminding myself it was for a great reason - the beginning of a new journey - a new phase in our war against NF2.
Getting through security was a pain. They checked Gavin's baby food and my water bottle, had to look through my backpack and Gavin's diaper bag and they made us take off our shoes. They don't even bother to let you go through with your shoes on anymore, they have you place them through the X-ray machine. The security officers had to look at all of our electronics and Jacob and I had to take off our jackets. I also had to fold up the stroller for x-ray. After all that we made it to the gate by 9:00 am. We boarded 1st at 9:10 am. Jacob and I were given the very 1st seats on at very small jet and we learned very quickly that our carryon bags were not going to fit under or over our seats. I thought that they could just sit at our feet, but I was wrong and almost lost it when confronted by the stewardess. I was very frustrated because Jacob was holding Gavin while I was trying to figure out where to put our things and Gavin was screaming. After the help of a very patient flight attendant and some rearranging of our stuff, our bags found places on the plane and we were on our way to Atlanta.
Gavin and Jacob were awesome. Jacob was nervous, but as soon as the plane took off and we were in the air Jacob was fine and even told me he thought take off was pretty cool. Gavin sat like a big boy in my lap, chewed on his toys, nursed and fell asleep. I couldn't of asked for better behaved boys. After being in the air for only 30 mins we landed in Atlanta....smooth flight and smooth landing. There was even a nice man (and his wife) who helped me by carrying G's stroller up the stairs into the airport. (Yes, that is how small our 1st plane was...it didn't even have a walk through.)
Atlanta airport was packed. We made our way from the D terminal to the A terminal. Jacob and G both liked riding the underground train. Jacob ate burnt pizza and I had bad coffee, only later to find that there was a Starbucks right by our next gate. Our walked from the train to the gate seemed long because we had so much crap, but we made it and found a nice spot to sit in front of the window. I fed Gavin his cereal and pears and let him get down, stretch his little legs and crawl around. Before I could even relax it was time to get back on a plane and be on our way to Ronald Regan Airport in Washington, DC.
The plane to DC was huge and completely full. We had more room to put our stuff, but were still squeezed in like sardines. The take off was much easier to swallow this time and the flight went by pretty fast. Gavin wasn't happy at 1st being restricted again, but gave in and repeated his same routine from the 1st flight. Jacob and I listened to music TD downloaded for us the night before and G slept. My arm felt like it would fall off from holding G by the time we were getting ready to land in DC and G woke up about 30 mins before we landed and graced us with a dirty stinky diaper. I figured if that was the worse thing I had to complain about regarding our flights I was very lucky.
Another smooth flight and landing was behind us. We had arrived at Ronald Regan National Airport in one piece. I hurried to the bathroom to change the dirty doody and then rushed to the baggage claim. I was determined to make the 3:00 pm shuttle. I was starving and pushing through with a horrible headache. The pressure from flying is rough on my head and ears. I was so relieved that we got everything done and were able to make the early shuttle.
The ride on the shuttle to NIH in Bethesda, MD was very nice after G stopped crying about being in his car seat again. Jacob and I tore into the bag of goodies Nana and Papa had given him. We ate all of the cheese, crackers, and summer sausage...also the brownie, and m & ms, only noticing the no food or drink sign after we were done. Looking out the window at the slate rocks on the edge of the rivers and the bare trees, the view looked just like winter should look. The houses were huge and beautiful. It was getting late in the afternoon and was very gloomy outside. I was ready for dinner, a hot shower and bed.
The Children's Inn was awesome! Our room was very nice with lots of space. It had two double beds, a desk, dressers, a Pack N Play for Gavin, TV and Wifi. There was even a sitting chair with an ottoman in front of a huge window. We had plenty of room for Gavin to play and a place to put the stroller and all of our stuff.
That night a church came and served dinner for all the families at the Inn. We ate hot dogs, hamburgers, salad and fruit. Jacob quickly made a friend, David, from Georgia and spent most of the evening playing games in the Teen Room with him. Gavin and I explored the Inn, stopping to play in the common areas built just for little ones. I did my nightly prep, getting Gavin's bag ready for the next day, lunch, diapers, wipes, toys, etc. I looked up all of Jacob's appointments, laid out our clothes, took baths, etc. I had to round Jacob up and make him come in at 11:00 pm - he was having so much fun, but our Monday was going to be busy.
Monday, November 30, 2009
I woke up at 3:45 am to feed Gavin and couldn't go back to sleep. I laid in bed, thinking, wondering how our first day at the huge National Institutes of Health would go. I woke Jacob up at 6:30 am and got Gavin and myself ready. We bundled up and decided we would walk up the hill to the Clinical Center instead of taking the shuttle. It was supposed to rain, but it was only 7:30 am and hard to tell how the weather would be for the day.
Our morning went very well. We didn't wait long for any of our appointments and everyone was very nice. From 7:30 am to 1:30 pm Jacob did the following: Admissions to NIH, Blood work, Outpatient work up, New Patient work up, Pre anesthesia, Audiogram and ABR testing. I also managed to squeeze in a visit to the Voucher office and we went to the Security Center to get our yearly badges. We did a lot of paper work and answering questions. Jacob was nervous about having blood taken and the many viles of blood they took from him, but the nurse was very good and didn't hurt him at all. As for his hearing appointments, they weren't anything he hasn't done before and Jacob even got to take a nap during the ABR testing. We learned during his hearing testing that he has had a slight drop in hearing on the right side, but at this point it isn't anything to be concerned about. (Jacob’s last normal Audiogram was in July of this year) Gavin was awesome during all of this - riding in his stroller, eating cheerios, walking around the chairs and couches, chewing on his toys and sitting in my lap. The NIH Clinical building is very large -the only thing I can compare it to is Florida State campus. It is very clean and decorated with what I consider to be modern art, but still warm and calming. It appears they put in a lot of thought to the decor. The architecture is also very modern and open. Everyone we came in contact with was polite, educated and appeared to know what they were doing. Our day of appointments went by very fast.
After having lunch in the cafeteria we went back to the Inn to regroup. Jacob and I decided we would take the Metro Subway into Washington, D.C as a trial run for later in the week. It was really cold and started to rain, but we went anyway. It didn't turn out to be a very pleasant trip. Even from the start. I was unable to find an elevator to take us down the 200 ft into the subway system. I had to fold up Gavin's very heavy stroller and hold it and Gavin down the very steep escalator. Trying to figure out how to buy tickets from a machine with a fussy baby was a task too. Once on the Metro I held Gavin until he fell asleep. The closer we got to D.C the more full the train became. We decided we would get off in Chinatown. While approaching the Chinatown stop the conductor came on over the intercom announcing a person had been hit by a train at the Chinatown station and to expect delays. When we exited the train people were running to see the accident, there were firefighters, and police officers all around. We held onto each other and made our way up to ground level. The weather was terrible. It was raining and cold. Jacob and I put our hoodies up and I covered Gavin with his blanket and put his skully on. Jacob had also brought an umbrella that I held over Gavin while pushing the stroller. Gavin decided he was miserable and who could blame him. I ended up carrying him most of the rest of the way so he wouldn’t cry. We tried to walk around, but the weather was too bad. Jacob was very excited to see the busy city, but agreed that it wasn’t good for us to be out in the cold rain. We ended up going into the Smithsonian to warm up and get out of the rain. Too bad it was the Museum of Art and didn't have anything super cool that Jacob wanted to see, other than an amazing covered courtyard. We walked back to the train. The admissions machine ate one of our tickets and I had to jump over the gate with the stroller and hand Gavin to Jacob after he went through.....the station was packed because of rush hour. It was a nightmare. People were pushing and we waited through 3 trains. Finally we made it back to the Inn and Jacob had an interesting story to tell about his 1st time on a subway in the big city.
We ordered take-out and it wasn't very good. I was excited that our groceries Gina had ordered for us would arrive soon (between 7 and 9). We got our groceries and repeated our nightly routine.
I was exhausted but very pleased with Jacob, Gavin and myself. We had survived our 1st day at NIH, the nasty weather and the DC Metro subway!
I was ready for some sleep and whatever Tuesday would bring.
(Will post Day 3 - 6 soon)
Tuesday, November 17, 2009
Boy Scout Trip 11-13-2009 Hall Farm, Midway, Alabama
Boy Scout Camp Out
Hall Farm, Midway, Alabama
November 13-15 2009
I had the pleasure of going on the Troop 23 November Camp Out with Jacob to Mr. Matt Hall’s Farm in Midway, Alabama, about 40 miles northwest of Eufaula, Alabama, this past weekend. I was looking forward to spending some relaxing, quality time with Jacob, and I couldn’t have asked for a better weekend.
PRE-CAMP OUT
Jacob is working very hard on his rank advancements, and one of the requirements for Second Class (and one for First Class) is to plan the meals for an overnight camp out, volunteer to buy the food for a patrol, supervise the setup of the cooking area and cook breakfast, lunch and/or dinner for the patrol. Jacob graciously volunteered during the Monday meeting, and we stuck around afterward to get the grocery list for the trip. On the Thursday night before we left, we went to Sam’s Club and Walmart to purchase the breakfast (eggs, cheese and sausage on English muffins and cereal), lunch (ham and turkey sandwiches, chips, condiments and snacks) and dinner (green beans for 30 people) foods. Jacob learned a lot about budgeting and looking for deals! We packed the cold stuff in a cooler and brought the rest in a large box for the patrol. It was a nice way to get involved and Jacob did a great job staying within the budget.
FRIDAY THE 13th
Our trip started on Friday the 13th. We were asked to be at Killearn United Methodist Church at 4:30pm so that we could pack and leave by 5:00pm. As most things do when dealing with 18 scouts of varying ages, it took a little longer than expected to get gear, fishing poles, food and scouts loaded and ready to go. The Pack 23 Webelos were invited on this overnighter as their first experience with the Troop 23 Boy Scouts. Needless to say, there were a lot of scouts on the bus, and with the Cub adults riding, there wasn’t enough room for all of the adults. I rode with Mr. Hatchett on Friday, and it turned out to be a nice ride. We left KUMC at 6:15pm looking forward to the impending 4 hour trip to the farm. We arrived at the Hall Farm around 9:20pm central time, staring into a pitch black field where we would set up camp for the weekend. It was exciting, not knowing what the landscape looked like, or where the lake was… All I could hope for was that no one fell in! CD and Matt Hall warned us about cow patties and fire ants, not exactly a great combination while trying to set up tents in the dark! We set up camp in the light of the propane lanterns, unpacked our bags and called it a night. Jacob camped with Marcus Hatchett, and I had a tent to myself. I was told that it was going to be cold. Cold was understatement!
SATURDAY
After a night of shivering, I was up at 5:00am on Saturday. Surprisingly, I wasn’t the first one up. The sun was coming up already and you could see the lake and the landscape, and it was beautiful! Tim Hall had already caught two bass by the time I got dressed and rigged our poles. I woke Jacob up and we walked the 30 yards to the lakeside, a lot closer than I had realized the night before! Jacob had his new black and red Boo-Yah spinnerbait, and I opted for the black and orange mini rapala. It was later discovered that neither of these worked worth a damn! Tim caught a total of 8 bass Saturday morning, all on a small rooster tail. Of course, when the other rooster tails went on poles, nothing was biting. Tim obviously had the scoop on the timing and tactics.
CD decided to blow the whistle for the wake-up call around 7:00am. Most everyone was up already, but those that weren’t were quickly dressed and standing under the cooking tents. The boys broke into 3 patrols and began setting up the propane stoves on the “patrol boxes,” the work stations for each patrol. Coolers were unloaded and the boys started cooking. Jacob and Danny, the senior patrol leader for the camp out, went to work cooking sausage and eggs, cutting the muffins apart, getting the cheese ready and making the breakfast sandwiches for the 6 scouts in their patrol. Jacob was involved in all the steps, and it was really nice to see him working hard to earn his rank. I was really proud that Jacob didn’t complain or get frustrated, and he set a great example for the younger Cub Scouts in the patrol. Aside from my new, broken cooler (which no one could recall how it got broken), everything went as smooth as it could’ve. CD cooked for the adults, and in the cold weather, bacon, eggs and toast did the trick! We all ate around the fire and resumed fishing. Because Jacob did the cooking, he did not have to clean up afterwards, as is the rule of Scout camping. I think he finally realized why I love coming home and cooking! While the others cleaned up, we took a walk around the lake and tried our luck at different spots. Some of the scouts caught bass and blue gill, but up until about 11:00am, Jacob and I still had our skirts. I decided to switch to my skinny green worm with a weighted jighead. The bite had stopped for about 30 minutes, but I still fished, and around 11:10am I caught my first bass of the trip. He was a little guy, but he looks huge in my story! Jacob was a little disappointed that he hadn’t caught anything yet, and he moved across the lake to try another spot. I walked over to him and he was reeling in his purple worm, looking distraught. Right as the worm came up to the top of the bank, Jacob got his first bite and caught his first bass! He was stoked, so I left him to keep fishing. Most importantly, no skirts!
CD, Lyle and Mike had been setting up the “Amazing Race” challenges for the boys to compete in after lunch. I was double checking that the necessary equipment was at each station, so I missed Jacob’s “Biggest Bass of the Weekend.” The Cub Scouts were impressed and it was nice to see Jacob so happy. It was a 2.5 pounder, a nice size for the little lake we were at. CD called the boys in to make sandwiches and eat lunch, and explained the competition while we were all gathered. The boys were separated into 2 teams for the competition. There were 13 tasks that had to be completed, each with their own set of rules. Some of the tasks included buddy-walking, building a ladder from wood and rope, and making a stretcher to carry a “wounded” scout back to camp. The boys practiced knot-tying, orienteering, fire starting, flag pole building and most of all, teamwork. Tim and Danny did great jobs keeping their teams together and making sure everyone was involved. It was a great challenge, made even better by the fact that all the scouts had a great time. Good leadership made the activities possible, and CD did a great job planning and executing. It was a blast!
The competition ended as the sun went down. It was time for our dinner! CD fried turkeys and each patrol brought a side dish. We had Turkey, stuffing, corn and green beans for dinner. CD made a dutch oven dump cake for dessert. It was delicious, especially since the temperature was rapidly falling into the 40’s. We sat around a campfire for a long time. There was a meteor shower on Saturday, and a few of us did get to see some shooting stars. All of the stars were out, and it was a nice ending to a great day… even though it was only 7:30 pm! With all of the activity and early rising, bedtime came early for everyone, as soon as the Georgia-Auburn game ended!
“I will not be cold,” I told myself. Jacob decided he was sleeping in pants, socks and jacket. I chose to go with the wool socks, basketball shorts, 2 long sleeved shirts, a skully, and ear covers, with my jacket pulled over my head. We beat the cold Saturday night.
SUNDAY
Much like Saturday, we woke early and went fishing. It was colder than the morning before and since we had to pack up, I watched Jacob fish more than I fished. I began packing us up and taking off rain-flies to dry. It was very wet for being so cold. The scouts had cereal and the adults had another delicious hot breakfast cooked by CD. The coffee might have been the best part. Matt Hall is preacher at Canopy Roads Baptist Church, so we were able to have an amazing church service around the campfire. Mr. Hall’s message was simple: Be remembered. He tried to instill in the scouts the desire to complete tasks, to never quit, and to try to do the best you can, always. Great men are remembered, and scouting lays the foundation for great men.
After our service, fishing resumed. Some scouts caught blue gill, but not much activity otherwise. There was a lot to do to get ready to go, and all the scouts pitched in to get everything dried, taken down and repacked. A few hours and we were ready to hit the road. A few more pictures and it was time to go. We left around 11:15am Alabama time. I rode the bus this time, which was cool. I got to spend a little more time with Jacob and his buddies on the bus. We ate lunch in Eufaula and then poked home. We finally made it to Tallahassee around 5:30pm. It was a long day in the bus.
I was grateful to return to my wonderful wife and son, who were waiting for us out in the yard (with dinner cooked!). Jacob and I missed our family very much. We do a lot together, and it’s not very often that we’re away from each other (at least Tammy and me). It was well worth it though. I am thankful that I got to spend time with Jacob away from all the crap he puts up with everyday. We got to hang out, and it seems like these times are happening less and less as we all grow up. I was reminded how lucky I am to have such a great family. I am proud of Jacob for sticking with scouts and for wanting to advance. He showed leadership and determination this weekend. He was my best friend again, hanging out and joking around. I wish life could be a camp out every day. But as a wise and wonderful woman often tells me, if life was easy every day, we wouldn’t appreciate the good times as much as we do.
(Written by Thomas aka TD)
Wednesday, October 21, 2009
Three Month MRI and 6 wk Post Op Appt.
Our morning started off a bit rocky...Gavin woke up early and was not in the mood to take a 2 hour ride in his car seat to Gainesville, but what choice did we have? Our trip to Shands today was very important, as all of our trips are, but today was extra important. It was a important to me because we were going to learn if the tumor at the bottom of Jacob's brain stem had changed or grown and Jacob was going to meet with Dr. Pincus to have his 6 week post operative check up. These appointments were a big deal to Jacob for different reasons. He was going to find out if he could go hunting with Pop Dana this weekend and resume his normal activities.
On the way to G-ville I managed to make several necessary phone calls and make my mom very nervous about my driving and talking on the phone in the process. I did get needed information from the Division of Blind Services (whole different story) and I did find out that Jacob's MRI wasn't where I thought it was going to be (there are two different places Jacob goes for MRIs). I also found out that the orders they had on file didn't call for contrast. Jacob's MRIs always call for scanning without and with contrast. So after another call to the neuro surgeon's office that was straightened out.
We arrived at MRI early and they took Jacob back within 10 minutes. After changing into his gown, Jacob informed me that he wasn't in the mood for an IV today and he shed a few tears. After the "it's always worse in your head pep talk" Jacob willingly went to have his scan. They took pictures without and with contrast and Jacob said the nurse tech who placed the IV for contrast didn't hurt him at all. My mom, aka Nana sat with Jacob the entire time and she said Jacob sat perfectly still. Brave Young man. Everything went just as it was supposed to go and we were in and out of MRI within just a little over an hour.
Next Jacob had his post op appointment. As usual we met with the nurse, then a resident and then Dr. Pincus, who said Jacob looks fantastic! Also Jacob is now over 5'3 ft tall and officially taller than his mama! Dr. Pincus also reviewed the scans Jacob had just had and said the tumor in question, at the bottom of the brain stem does NOT look like it has grown or changed. Whew!! Fireworks, let's cheer. Great news and answered prayers. We will be toting the prayer blanket crocheted for Jacob from the ladies at Good Shepard with us everywhere. I do have to call on Monday to confirm Dr. Pincus' opinion with the radiology doctor's report, but Dr. Pincus was very confident in his findings.
The other good news we received was that Jacob can go hunting, ride roller coasters and fly on airplanes. TD was thrilled to know Jacob can once again take out the trash. I was also very happy that Dr. Pincus said that once Jacob starts his scans and appointments at NIH we can bring those scans home and Shands can put them in their system. If Shands is happy with the NIH scans then Jacob will only have to have the scans at NIH. There were a few questions I forgot to address, but I will save them for next time. By the time we saw Dr. Pincus Gavin was no longer happy and the little Captain Cranky Pants I put in the car seat that morning had returned. G did finally pass out as I was running around the hospital trying to get the surgery records and recent scan copies for NIH. That was a much needed nap!
For those of you who don't know we finally got our dates for Jacob's first trip to The National Institute of Health in Bethesda, MD to participate in the 5 year NF2 study there. Jacob, Gavin and I will be leaving November 29 and returning on December 5. I will take notes and hopefully blog all about it when we get home.
For now though we are excited about Chason spending the night with us tomorrow, Granma Gina visiting this weekend, Jacob going hunting with Pop Dana and Gavin's 1st Halloween next weekend.
Thank you, Thomas for helping me get Brie to and from school today and taking such good care of her. I'm so lucky I have you. You are precious to me.
On the way to G-ville I managed to make several necessary phone calls and make my mom very nervous about my driving and talking on the phone in the process. I did get needed information from the Division of Blind Services (whole different story) and I did find out that Jacob's MRI wasn't where I thought it was going to be (there are two different places Jacob goes for MRIs). I also found out that the orders they had on file didn't call for contrast. Jacob's MRIs always call for scanning without and with contrast. So after another call to the neuro surgeon's office that was straightened out.
We arrived at MRI early and they took Jacob back within 10 minutes. After changing into his gown, Jacob informed me that he wasn't in the mood for an IV today and he shed a few tears. After the "it's always worse in your head pep talk" Jacob willingly went to have his scan. They took pictures without and with contrast and Jacob said the nurse tech who placed the IV for contrast didn't hurt him at all. My mom, aka Nana sat with Jacob the entire time and she said Jacob sat perfectly still. Brave Young man. Everything went just as it was supposed to go and we were in and out of MRI within just a little over an hour.
Next Jacob had his post op appointment. As usual we met with the nurse, then a resident and then Dr. Pincus, who said Jacob looks fantastic! Also Jacob is now over 5'3 ft tall and officially taller than his mama! Dr. Pincus also reviewed the scans Jacob had just had and said the tumor in question, at the bottom of the brain stem does NOT look like it has grown or changed. Whew!! Fireworks, let's cheer. Great news and answered prayers. We will be toting the prayer blanket crocheted for Jacob from the ladies at Good Shepard with us everywhere. I do have to call on Monday to confirm Dr. Pincus' opinion with the radiology doctor's report, but Dr. Pincus was very confident in his findings.
The other good news we received was that Jacob can go hunting, ride roller coasters and fly on airplanes. TD was thrilled to know Jacob can once again take out the trash. I was also very happy that Dr. Pincus said that once Jacob starts his scans and appointments at NIH we can bring those scans home and Shands can put them in their system. If Shands is happy with the NIH scans then Jacob will only have to have the scans at NIH. There were a few questions I forgot to address, but I will save them for next time. By the time we saw Dr. Pincus Gavin was no longer happy and the little Captain Cranky Pants I put in the car seat that morning had returned. G did finally pass out as I was running around the hospital trying to get the surgery records and recent scan copies for NIH. That was a much needed nap!
For those of you who don't know we finally got our dates for Jacob's first trip to The National Institute of Health in Bethesda, MD to participate in the 5 year NF2 study there. Jacob, Gavin and I will be leaving November 29 and returning on December 5. I will take notes and hopefully blog all about it when we get home.
For now though we are excited about Chason spending the night with us tomorrow, Granma Gina visiting this weekend, Jacob going hunting with Pop Dana and Gavin's 1st Halloween next weekend.
Thank you, Thomas for helping me get Brie to and from school today and taking such good care of her. I'm so lucky I have you. You are precious to me.
Saturday, October 17, 2009
Happy Half a Year Gavin!!
Happy Half a Year Gavin!!
Today we celebrated Gavin turning 6 months old.
(Thanks for the idea Heather!)
After stopping for sodas at the gas mart, Publix for the cupcakes, and Michael's for the "motor" for Jacob's rockets we arrived at Tom Brown Park around noon. Even though there were a lot of people at the park we were still able 
to find a nice pavilion to have our picnic lunch TD made for us. TD hung Gavin's Happy birthday decorations and unpacked our lunch. Gavin and I were on bug patrol, pointing out to TD any bugs that needed to be "removed" before Gavin and I could settle in for the party. We waited for Nana and Papa Ken to arrive. It had not turned out to be the "sunny in the low 70s" day our always right weather person promised us. It was freezing! Even the wasps TD had to squish were frozen, but we were determined to make the best of a very special day.
to find a nice pavilion to have our picnic lunch TD made for us. TD hung Gavin's Happy birthday decorations and unpacked our lunch. Gavin and I were on bug patrol, pointing out to TD any bugs that needed to be "removed" before Gavin and I could settle in for the party. We waited for Nana and Papa Ken to arrive. It had not turned out to be the "sunny in the low 70s" day our always right weather person promised us. It was freezing! Even the wasps TD had to squish were frozen, but we were determined to make the best of a very special day. Nana and Papa arrived with Gavin 1st balloon. He loved it. Nana tied it to Gavin's wrist and he watched it all afternoon. After eating lunch I enjoyed watching my big boys chase each other with cans of silly string. We then packed up our picnic and headed to the van to warm up. While I thawed out TD and Jacob built Jacob's rocket and missile. About 30 minutes later we headed to the top of the hill, in the middle of the Frisbee golf course. Shooting off the rockets was awesome! We did a countdown and everything. It was even fun looking for the parachute parts in the trees after each launch. Later the boys played woofer ball while Gavin took a nap in the grass on our quilt.
It was the best happy half a year ever!!
On Monday Gavin had his 6 month appointment with our primary doctor, Julie Kelch. My baby boy weighs 17 lbs 8 oz and is 27 1/2 inches tall. He is in the 75 percentile for a breastfed baby and is super healthy. Gavin has reached all the milestones of a 6 month old baby and then some. He has been sitting on his own for over a month and is now getting up on his hands and knees rocking. He also knows his name, is curious to what is being said around him and is incredibly social. Gavin is throwing down toys and objects to watch them fall and to see what happens once they do. He is passing objects from hand to hand and using both hands to hold things. He is also getting things out of his reach by scooting and rolling and he is feeding himself bitter biscuits. Busy Busy.I love this age. Everything is new and exciting to Gavin. He brings new life to everything for me. He has so much personality. He is so amazing. I can never say enough how in love I am with him and how happy he makes me. and as I will say over and over again, I am so blessed to have Gavin, Jacob, Brie and TD!!
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