Hello Friends and Family. Just wanted to touch base with everyone to let you know how Cameron is doing. She has completed first grade and is onto a busy summer. The first week out of school Cameron attended a Constraint Induced Movement Therapy Camp (CIMT) in Chapel Hill. Sounds really strange but it is pretty amazing. They actually casted Cameron's good arm (her right side) and they force these kids to use there effected side (her left side) through activities, art, and creative play. It was a wonderful experience for her and for me. I got to spend a week with other parents whose children present the same way physically. I got a lot of great ideas and support from these new friends and we look forward to next year.
We had a week off so to speak and now Cameron is at another Camp (overnight) BTW. I had a really hard time leaving her but I know that these independent experiences really help her grow in confidence and emotionally. I keep thinking about her and just saying quick prayers for her safety. I mainly worry about her tripping and falling so say a little prayer with me.
Once Cameron gets back we are heading to Baltimore for doctors appointments and the Hemispherectomy reunion. This is going to be such a wonderful experience for all of us. My mom, Casey, Cameron, Caroline and I will all be there with many other families that I have talked to alot but never met them or their children. It will be a major information gather session and it should be lots of fun.
Medically Cameron is great. She had an EEG about two weeks ago and everything looked good. Not perfect but good. Dr. Hartman is allowing us to get her off of Keppra completely so this is her last week on it. Then we just have two medications to deal with Trileptal and Depakote. Both of these medications have done well for her with minimal side effects. I feel really good about this and hopefully all will go well.
Everything else in life is moving along. It has been a hard 2009 but there have also been many blessings. In January we lost my precious niece Shelby Nicholson to a tragic car accident. This was a major shock and blow to our family especially her mom ( my sis) and my parents. While I have lost family members before, never has it been so shocking and someone so young. The reality of it has still not completely sunk in and on days when it does it is just very hard. My family has done many things to honor Shelby's memory one of which is a scholarship fund at Woodbridge HS. They gave away the first scholarship this year to a young man who was very deserving. Hopefully, and with God's help each act they preform in Shelby's honor will grant them a little more peace.
A major blessing is that my parents found a perfect home in Jamestown NC and snatched it up. It is very close to our home and I look forward to my dad's retirement and a less hectic lifestyle for both of my parents. That is it for now. Oh yeah, Cameron may end up on Oprah. Cross your fingers. They are wanting to do a story on a kid that has had a hemi so she is in the running but so are many other hospitals and children so we shall see. Also, you can become a follower of Cam's site and get updates when there is one (I'll try to do better). Love to all. Shelly
Monday, June 29, 2009
Wednesday, January 07, 2009
2009!!! It was real but goodbye 2008.....
another post with more detail soon but Christmas and the holidays were very blessed in the Motts in Jamestown house. Cameron & Caroline both "got what they always wanted". I have a great video that hopefully I can get posted here. Pictures are easy--here are a few recent ones. Cameron is still doing great with no seizures since the surgery--praise God!! Our little (big) miracle :-) Many thanks for all your prayers!! Horsie pics from her 8th bday present from dad.
Tuesday, September 09, 2008
Back to school a success
Cameron is now in her third week of school at Florence Elementary. All is going well and she is excited each day to go to school. Cameron has a wonderful teacher and a wonderful aide both of which will help Cameron to become as independent as possible to eliminate the need for an aide next year. Cameron has also started ballet lessons at the YMCA with her little sis and does an outstanding job. We have always been inspired by another young lady Jodi who like Cameron had a hemi at the age of three. She always took dance lessons which she attributes to her physical recovery. By the way Jodi is now in her 1st year at a University to become a teacher. I will update the blog with some dance video later this week.
There will be a show airing this week called The Doctors. On the 11th the episode will be featuring Jessie Hall. This is another young lady that had a hemi at Hopkins in June of this year. They are a wonderful family and I hope that you all enjoy the episode. That's all for now. Shelly
There will be a show airing this week called The Doctors. On the 11th the episode will be featuring Jessie Hall. This is another young lady that had a hemi at Hopkins in June of this year. They are a wonderful family and I hope that you all enjoy the episode. That's all for now. Shelly
Wednesday, August 06, 2008
Our Busy & Wonderful Summer of 2008
Video of Saebo Flex--go Cams
Vacation Bible School with cousin Clare
Beach Time! We love Florida and the Gulf Coast!!
Watching fireworks on the 4th of July with cousins at the beach. Happy 4th!!
At Gigi's house before heading to Baltimore for Cam's follow up
Girls acting silly at the aquariam in Baltimore....
Heading to Victory Junction Gang Camp!!!!
Cameron's room at camp--purple stock car bed and gas pump!! Go Pirates!!!
Vegas baby!! Outside of Cameron's camp house....
Another picture of Cameron's casa at camp..awesome place for sure!!
We picked Cameron up from camp today! We had not seen or talked to her since Sunday. She fished, rode horses, went bowling, did crafts, "rode" in a hot air baloon, went swimming, made friends, and had an super awesome fun time. On the way home she said "I wanna go back to camp!!" She is in bed early tonight so it was a full week of fun & games for her for sure. Thank you to the staff at Victory Junction for taking care of our sweet angel!!!
Here is their website if you are interested in learning more about the camp or if you would like to donate to this wonderful place for special needs children to have a week of just fun:
http://www.victoryjunction.org/aa_home/index.html
Tuesday, August 05, 2008
Victory Junction Gang Camp
Hey everyone. All is going very well at the Mott household. Cameron is at Victory Junction Camp in Randleman NC. Yes this is an overnight camp. Wow, how far we have come. This is an amazing camp that was created by Kyle Petty (Race car driver) to honor his son Adam Petty. This is such a great opportunity for Cameron at it is truly a dream camp with everything you could imagine. We are not able to talk with her but I know that she is having a great time and hopefully she is bonding with some other wonderful children. My hope for Cam's this week is increased independence and FUN, FUN, FUN.
We also returned from a trip from Baltimore week before last and it was amazing to believe that it had been one year since Cameron's hemi. We saw all of her doctors and they were very excited with Cameron's progress. They were also very excited about the progress she is making on her left arm. We still have a long way to go but she is using a SAEBO flex (device made for stroke patients) that allows her to do exercises to strengthen her arm. She also did Neuro Psych testing and analysis. This was really exciting b/c Cameron has a Normal IQ. IQ's are done on a bell curve and hers is within the normal range. What does this mean for Cam's? That she will never have an educator believe that she is not capable. We still have our challenges cut out for us. Mainly with attending or focusing for longer periods of time. The Neuro Psych bascially explained it like this. Cameron has less brain that she is utilizing for the same things that everyone else is doing and this can make her tired. Works for me. It is helpful to understand why Cameron is the way she is. ---------Amazing.
School starts at the end of the month and I will miss all of my time with the girls. They have been quite entertaining this summer and we have had so much fun. Caroline our four year old saw a large cross yesterday and said " Hey, that is what Jesus got pinned to". Another funny moment happened when Caroline came running into my room to tell me "Mommy, Mommy, Cameron is going to be a tattletale". "About what" I asked her. "I hit her". Casey promises that he will put up a little video of Cameron using the Saebo and some pic's tomorrow so take another look soon. I am also going to list some blogs of other families who have undergone Hemi's. One family the Hall's have created a hemispherectomy Foundation that benefits children that are going to college or other higher educational training. Please take a look and read the essays of the three scholarship winners. Love y'all. Shelly
We also returned from a trip from Baltimore week before last and it was amazing to believe that it had been one year since Cameron's hemi. We saw all of her doctors and they were very excited with Cameron's progress. They were also very excited about the progress she is making on her left arm. We still have a long way to go but she is using a SAEBO flex (device made for stroke patients) that allows her to do exercises to strengthen her arm. She also did Neuro Psych testing and analysis. This was really exciting b/c Cameron has a Normal IQ. IQ's are done on a bell curve and hers is within the normal range. What does this mean for Cam's? That she will never have an educator believe that she is not capable. We still have our challenges cut out for us. Mainly with attending or focusing for longer periods of time. The Neuro Psych bascially explained it like this. Cameron has less brain that she is utilizing for the same things that everyone else is doing and this can make her tired. Works for me. It is helpful to understand why Cameron is the way she is. ---------Amazing.
School starts at the end of the month and I will miss all of my time with the girls. They have been quite entertaining this summer and we have had so much fun. Caroline our four year old saw a large cross yesterday and said " Hey, that is what Jesus got pinned to". Another funny moment happened when Caroline came running into my room to tell me "Mommy, Mommy, Cameron is going to be a tattletale". "About what" I asked her. "I hit her". Casey promises that he will put up a little video of Cameron using the Saebo and some pic's tomorrow so take another look soon. I am also going to list some blogs of other families who have undergone Hemi's. One family the Hall's have created a hemispherectomy Foundation that benefits children that are going to college or other higher educational training. Please take a look and read the essays of the three scholarship winners. Love y'all. Shelly
Wednesday, May 21, 2008
wow an update from the Motts
Hello to all. Just wanted to update you on Cameron. She is doing really well and it is truly hard to believe that we are almost a year out. Cameron in thriving in school and has had a great year in her Kindergarten classroom. She is gaining more independence each day and I plan to give this special attention over the summer. She is reading on grade level, adding and subtracting, writing and is very verbal and descriptive when talking. Again, we have been very fortunate to have such a great group of teachers, specialist and caregivers at school. Thanks to you all and thanks to Mrs. Kay for advocating so much on Cam's behalf.
Cameron still has an intensive therapy schedule, but we just got the word today that she will be cutting back one hour in PT. That one hour is precious and we will take it. She is making lots of progress in all areas but still has some work to do on that left arm. Cameron's OT's and PT's have been working to get her a SAEBO FLEX. It is a really cool splint that looks like a mechanical hand and should build her strength and increase her use of this arm. This is so important for many reasons. Mainly to increase the hand and arms function as a helper hand and to give her more awareness. Cameron falls alot and when she does it is never good for that left wrist. She has had one break and several other close calls.
We will have a busy summer with trips, camp, and doctors appointments. Cameron will be attending Victory Junction Camp in August. This is a camp for children with special needs and each week is designated for specific disorders. She will love this experience away from home and we hope this will be a time to foster independence as well. We are also planning a trip to Pensacola Florida with Casey's extended family and my mom and niece. This should be a great trip as well. In July we will head up to Hopkins for a doctors appointment and re-evaluations at KKI which is where Cameron did her rehab. At this time they will do cognitive testing as well. I know she has made great gains and I hope it translates during testing.
On another front there are several families going through the stresses on Rasmussen's Syndrome. One of which is in NC and recently had the surgery at Duke. His name is Noah, so keep his family in your prayers. Another little girl named Jessie Hall is going to have the surgery at Hopkins on June 11th. Jessie's story has been on CNN Headline news and hopefully they are going to do a story on Good Morning America or possibly People magazine. So many people have already seen this and it brings more attention to this disorder plus what these kids are really capable of after such a drastic surgery. So be on the lookout and lift up this family as well.
I think that is it for now, we are counting down the days till summer 13 to go. Love you all. The Motts.
Cameron still has an intensive therapy schedule, but we just got the word today that she will be cutting back one hour in PT. That one hour is precious and we will take it. She is making lots of progress in all areas but still has some work to do on that left arm. Cameron's OT's and PT's have been working to get her a SAEBO FLEX. It is a really cool splint that looks like a mechanical hand and should build her strength and increase her use of this arm. This is so important for many reasons. Mainly to increase the hand and arms function as a helper hand and to give her more awareness. Cameron falls alot and when she does it is never good for that left wrist. She has had one break and several other close calls.
We will have a busy summer with trips, camp, and doctors appointments. Cameron will be attending Victory Junction Camp in August. This is a camp for children with special needs and each week is designated for specific disorders. She will love this experience away from home and we hope this will be a time to foster independence as well. We are also planning a trip to Pensacola Florida with Casey's extended family and my mom and niece. This should be a great trip as well. In July we will head up to Hopkins for a doctors appointment and re-evaluations at KKI which is where Cameron did her rehab. At this time they will do cognitive testing as well. I know she has made great gains and I hope it translates during testing.
On another front there are several families going through the stresses on Rasmussen's Syndrome. One of which is in NC and recently had the surgery at Duke. His name is Noah, so keep his family in your prayers. Another little girl named Jessie Hall is going to have the surgery at Hopkins on June 11th. Jessie's story has been on CNN Headline news and hopefully they are going to do a story on Good Morning America or possibly People magazine. So many people have already seen this and it brings more attention to this disorder plus what these kids are really capable of after such a drastic surgery. So be on the lookout and lift up this family as well.
I think that is it for now, we are counting down the days till summer 13 to go. Love you all. The Motts.
Friday, January 04, 2008
even more pictures
little growler
santa's elfling
you go bday girl--7!!!!!!
scary, but I hear "wait until they are teenagers"
Thursday, January 03, 2008
recent picture--cousins with new dog
Cameron & Caroline with their cousin Patrick--Cameron has her right hand on the new puppy Jose at my sister's house.....more pictures to follow. Happy New Year!!!
Sunday, December 23, 2007
Merry Christmas
Hello to all of our friends. It has been such a busy time and we apologize for not updating you all sooner. Cameron is truly thriving and we know that this is a true blessing. Her school year has progressed very nicely and her teachers, therapist and nurse Sandra have worked hard to accommodate all of her needs. Cameron is now writing, reading, memorizing site words, learning sounds and socializing very well with her classmates. I have started volunteering in her class on Mondays and I am having so much fun. I usually do an art activity with the kids or I work with children on their reading. Cameron loves to see me there and I love getting to know the kids. In January with should be holding an IEP meeting with the school which will officially list Cameron on the Kindergarten roster for Mrs. Ketners class. We are so happy that this school year has been such a good experience.
Cameron continues therapy at the Millis center which we love. Her hours have been reduced from 10 to 8 per week which is a nice break. She is beginning to make some good strides in speech and she really enjoys being successful. She is so determined and typically hard working. Physically Cameron is so independent and is gaining confidence daily. She does this little hop skip thing, runs, gets up and down stairs, and really maneuvers well in her environment. She falls occasionally when she moves really fast and then gets tripped up but so far we have been lucky with nothing other then bruises. We are still working on independence at school but I know that will come.
We celebrated Cameron's birthday the first weekend on December with some of her little friends and it was a wonderful day. We had a princess party and it was great to see her with these other little girls. They are so kind and sweet to her. We also went to Casey's Kiwanis Christmas party with the girls and they got to see Santa. That was quite a treat and this is the first year that Cameron has really been excited and understood what was going on. Caroline is also very excited and knows which present under the tree is for her and they both can't wait for Santa to come.
We celebrated with Casey's family last night and it was so much fun. It is so amazing to see all of your nieces and nephews growing up. We will spend Christmas Day at Casey's parents house for a low key brunch. It will be nice to be there one last time and enjoy all of memories of Sophie and Papa in a celebratory way. Both of Casey's parents past away this year which makes the holiday season hard but we are also so grateful for the miracle of Cameron's health. May God help you to remember all of your blessings this season. And please pray for Matthew Griener our friends son who was recently diagnosed with Muscular Dystrophy. This is a name we have all heard but know so little about. There is no cure and very few treatment options. Please pray that they find the right people to help them through the challenges that they will face. Much love to everyone. The Mott Family.
Cameron continues therapy at the Millis center which we love. Her hours have been reduced from 10 to 8 per week which is a nice break. She is beginning to make some good strides in speech and she really enjoys being successful. She is so determined and typically hard working. Physically Cameron is so independent and is gaining confidence daily. She does this little hop skip thing, runs, gets up and down stairs, and really maneuvers well in her environment. She falls occasionally when she moves really fast and then gets tripped up but so far we have been lucky with nothing other then bruises. We are still working on independence at school but I know that will come.
We celebrated Cameron's birthday the first weekend on December with some of her little friends and it was a wonderful day. We had a princess party and it was great to see her with these other little girls. They are so kind and sweet to her. We also went to Casey's Kiwanis Christmas party with the girls and they got to see Santa. That was quite a treat and this is the first year that Cameron has really been excited and understood what was going on. Caroline is also very excited and knows which present under the tree is for her and they both can't wait for Santa to come.
We celebrated with Casey's family last night and it was so much fun. It is so amazing to see all of your nieces and nephews growing up. We will spend Christmas Day at Casey's parents house for a low key brunch. It will be nice to be there one last time and enjoy all of memories of Sophie and Papa in a celebratory way. Both of Casey's parents past away this year which makes the holiday season hard but we are also so grateful for the miracle of Cameron's health. May God help you to remember all of your blessings this season. And please pray for Matthew Griener our friends son who was recently diagnosed with Muscular Dystrophy. This is a name we have all heard but know so little about. There is no cure and very few treatment options. Please pray that they find the right people to help them through the challenges that they will face. Much love to everyone. The Mott Family.
Friday, November 02, 2007
Looking Good
Everything went well at Hopkins with the spinal tap and they knew right away that all was well with the pressure in her brain being normal. This really leaves the medication as the probable cause so we will keep doing blood test to see where her levels are so we can work Cam's down on her medications. This is great news as the doctors did not want to touch her meds for sometime but we really don't have a choice. Otherwise Cameron is great. She got really excited this afternoon when we were outside and ran down a slight incline while holding my hand. I think she was pretty impressed with herself and she was able to duplicate it a second time. That's all for now. Take care. The Motts.
Sunday, October 21, 2007
Sunday night (it's hard to title these things)
Anyway, just wanted to give you an update before the week takes over. Cameron and I are flying to DC on Wednesday to meet my mom and then we are driving up to Baltimore to stay the night. On Thursday Cameron will have a Spinal Tap to rule out any issues with pressure in her ventricles. We will then fly back on Saturday. Hopefully this will help us understand why she is having these other issues.
I suspect that it is completely related to her medication Depakote which is a wonderful med I just think she is taking too much. Casey took her Saturday am to get her levels drawn and she was at 149. A therapeutic level is 50-100 and she is normally at the high end between 90-100. So this 149 came first think in the morning and she had no medicine since 6:30 the night before. So each morning if she is this high we are then giving her another dose of 375mg and I think it just hits her hard around 9:30 or 10 and causes these problems. We are going to reduce her dose tomorrow and we will see what happens over the next few days. Take care. Shelly
I suspect that it is completely related to her medication Depakote which is a wonderful med I just think she is taking too much. Casey took her Saturday am to get her levels drawn and she was at 149. A therapeutic level is 50-100 and she is normally at the high end between 90-100. So this 149 came first think in the morning and she had no medicine since 6:30 the night before. So each morning if she is this high we are then giving her another dose of 375mg and I think it just hits her hard around 9:30 or 10 and causes these problems. We are going to reduce her dose tomorrow and we will see what happens over the next few days. Take care. Shelly
Wednesday, October 17, 2007
News from trip to Baltimore.
Hey, Just wanted to let everyone know that all went pretty well on our latest trip back to Baltimore. Cameron has had a strange few days with lots of nystagmus (eye movements) and dizzy spells. We do not believe that these are seizures although they do put her in a state where she does not function very well. Typically, they come on and she can sleep them off with a short nap but on Tuesday the day of our appointments, she was like this from 8:15 - 12:15. She did some work on the split treadmill and the folks in the lab were very patient with us as Cameron took two short naps during this time. It was a little frustrating b/c she was not at her best and I was so hoping for them to see how well she is truly doing. Then we were off to see Dr. Jallo the neurosurgeon and she had the same symptoms which was perfect b/c we wanted them to see in person what we were talking about. When it was time to see Dr. Hartman the neurologist she was back to being perky, happy and no nystgmus, of course. Luckily, we had recorded it earlier in the day so that they could see what we had been talking about. We also had an opportunity to see Cameron's MRI which looked great. They really removed almost everything from the right side except for a small area in the frontal lobe and an area of the occipital lobe.
The main discussion was why are these eye movements and dizzy spells occurring. They believe it can be one of three things. First, it could be something just post op caused by the trauma of surgery and it could go away. It could be medication related so we will be doing some blood work and adjustments if necessary. Or it could be that there is some pressure building up in her brain. They want to rule this last option out. SO we are heading back to Hopkins on Wednesday for a Thursday appointment where they will do a Lumbar puncture or a Spinal tap. This will give them a number or pressure level that may answer some questions. We will keep you posted upon our return.
Overall Cameron is doing so well and school is also progressing but not without challenges. It is hard for her educators and therapist at school as this is new to them and Cameron is changing all the time. The group is very dedicated to helping her to be successful and to get the most out of each day which is so important. Thanks to Cameron's Florence team. Take care. Shelly
The main discussion was why are these eye movements and dizzy spells occurring. They believe it can be one of three things. First, it could be something just post op caused by the trauma of surgery and it could go away. It could be medication related so we will be doing some blood work and adjustments if necessary. Or it could be that there is some pressure building up in her brain. They want to rule this last option out. SO we are heading back to Hopkins on Wednesday for a Thursday appointment where they will do a Lumbar puncture or a Spinal tap. This will give them a number or pressure level that may answer some questions. We will keep you posted upon our return.
Overall Cameron is doing so well and school is also progressing but not without challenges. It is hard for her educators and therapist at school as this is new to them and Cameron is changing all the time. The group is very dedicated to helping her to be successful and to get the most out of each day which is so important. Thanks to Cameron's Florence team. Take care. Shelly
Friday, October 12, 2007
Heading to Hopkins
Just wanted to share a success with everyone. Cameron had PT yesterday and it was amazing. Thursday's are usually her swim day's and I went in about mid-way through her session to observe. The therapist had placed four electrodes that send a small electrical stimulation to Cam's muscles, on her quad and lower leg. They had her brace off and no shoes and the girl was walking beautifully. There was barely a limp and almost no hyper extension of her left leg. It is amazing the things they come up with to help her and they are so committed to her success. Thanks, Katherine, Jenny, Carol and Pat. All of these folks that help Cameron each week are amazing.
For Cameron the first year is very important b/c the left side of her brain must learn to make all of these connections that the right side used to make. Hopefully things like this will enable her to have a very mobile life. We are heading to NOVA tomorrow and then to Baltimore on Monday. Cameron will walk on a special treadmill that also reduces her limp on Tuesday morning and then meet with the neurologist and neurosurgeon. We will update everyone on their thoughts as well. Take care. The Motts.
For Cameron the first year is very important b/c the left side of her brain must learn to make all of these connections that the right side used to make. Hopefully things like this will enable her to have a very mobile life. We are heading to NOVA tomorrow and then to Baltimore on Monday. Cameron will walk on a special treadmill that also reduces her limp on Tuesday morning and then meet with the neurologist and neurosurgeon. We will update everyone on their thoughts as well. Take care. The Motts.
Sunday, October 07, 2007
Almost 4 months post op
Hello everyone. There have been so many things going on over the past couple of months that have kept us very busy. Cameron started school as you know and is doing very well. She is surrounded by a great team that is still trying to figure out how to deal with her very specific needs. Cameron spends all day in the regular classroom setting except for a small nap each morning. The teachers and therapist are beginning to come together on ways to modify her work as the pace in kindergarten picks up quickly.
Therapy in High Point also continues with about 10 hours per week and Cameron continues to make progress. She recently learned how to get up from the ground with no assistance at all, I was so impressed. Accomplishments like these really build up her self esteem and are so important.
As Casey mentioned in his last post the golf tournament that our friends had for us and that so many of you played in was a huge success. We had around 130 players and the day was truly perfect in so many ways. We had lots of family and close friends there and it was something that we will never forget. Thank you all. Earlier the same week of the golf tournament Casey's dad, Joe Mott passed away. He was ill but his death was still very hard on Casey and his brothers and sisters as they had just lost "Sophie" there mother in February. It truly was a blessing that PaPa was able to see Cameron's success before his passing.
Cameron had her first post op MRI on Monday October the 1st and I got concerned with the radiologist initial reading but we have been reassured by our Dr's at Hopkins. She has her follow up appointments next week on Tuesday and I am so excited for them to see this happy, funny and hardworking little girl that has come so far.
We also have a link to the documentary that was done on Cam's if anyone is interested in seeing it please e-mail me and I will forward it to you. This was hard to watch but truly shows the miracle that God has performed in her life. That is simply what it is.
Shelly, themotts27@triad.rr.com
Therapy in High Point also continues with about 10 hours per week and Cameron continues to make progress. She recently learned how to get up from the ground with no assistance at all, I was so impressed. Accomplishments like these really build up her self esteem and are so important.
As Casey mentioned in his last post the golf tournament that our friends had for us and that so many of you played in was a huge success. We had around 130 players and the day was truly perfect in so many ways. We had lots of family and close friends there and it was something that we will never forget. Thank you all. Earlier the same week of the golf tournament Casey's dad, Joe Mott passed away. He was ill but his death was still very hard on Casey and his brothers and sisters as they had just lost "Sophie" there mother in February. It truly was a blessing that PaPa was able to see Cameron's success before his passing.
Cameron had her first post op MRI on Monday October the 1st and I got concerned with the radiologist initial reading but we have been reassured by our Dr's at Hopkins. She has her follow up appointments next week on Tuesday and I am so excited for them to see this happy, funny and hardworking little girl that has come so far.
We also have a link to the documentary that was done on Cam's if anyone is interested in seeing it please e-mail me and I will forward it to you. This was hard to watch but truly shows the miracle that God has performed in her life. That is simply what it is.
Shelly, themotts27@triad.rr.com
Sunday, September 16, 2007
Caring for Cameron Golf Tournament
Hello dear friends!!!
It has been a while since our last post which I guess is good news. Not much to report but continued improvements with Cameron and still no seizures since the early ones after the surgery. She is a true sweetheart and has a very bright future ahead.
The golf tournament Friday for Cameron was a huge success both in the turnout and the delay in the substantial rain that we needed badly. We owe a tremendous thanks to all of our friends who put this together for us as well as all the other volunteers and those who decided to participate. It humbles us to see how many people care for us and Cameron's progress. God's grace has definitely touched many hearts. My hope is that this has better prepared us to take initiative to help as others will also struggle with tough times, grief and sorrow. You all have been an awesome example for us. Thank you!!
Below are some pictures from the PBR bull riding event in Greensboro last night--that's right bull riding--ride 'em cowboys!! Cameron was selected by the Believe in Tomorrow Children's Foundation for a backstage visit with the cowboys and bulls. It was a really neat experience and we all had a great time. Go see it next time they come to your town--great patriotic family night with non-stop action and entertainment. The girls had a ball.........
love, the motts
It has been a while since our last post which I guess is good news. Not much to report but continued improvements with Cameron and still no seizures since the early ones after the surgery. She is a true sweetheart and has a very bright future ahead.
The golf tournament Friday for Cameron was a huge success both in the turnout and the delay in the substantial rain that we needed badly. We owe a tremendous thanks to all of our friends who put this together for us as well as all the other volunteers and those who decided to participate. It humbles us to see how many people care for us and Cameron's progress. God's grace has definitely touched many hearts. My hope is that this has better prepared us to take initiative to help as others will also struggle with tough times, grief and sorrow. You all have been an awesome example for us. Thank you!!
Below are some pictures from the PBR bull riding event in Greensboro last night--that's right bull riding--ride 'em cowboys!! Cameron was selected by the Believe in Tomorrow Children's Foundation for a backstage visit with the cowboys and bulls. It was a really neat experience and we all had a great time. Go see it next time they come to your town--great patriotic family night with non-stop action and entertainment. The girls had a ball.........
love, the motts
Thursday, August 30, 2007
Amazing Cameron
Cameron has had two great days at school and woke up this moring and the first words out of her mouth "I don't want to bring my lunch". She wants to buy school lunch but I have been packing a lunch for her. She was singing the days of the week song this morning and really looks forward to school. Cameron is participating in most activities even regular PE which shocked me and she is coping well. We are very lucky for Cameron to be with her same teacher from last year to provide comfort and support and a good understanding of Cameron. Additionally, Cameron has a regular ed teacher whom Casey says reminds him of my mom. I guess that is why I felt so drawn to her and I truly believe that this is a wonderful fit. I was going to say perfect fit but I am learning that nothing is ever really perfect but it sure can get pretty close. I love the school Florence El. and it just felt so "comfortable" to me and Cameron.
After Cameron's first day of school ending at 2:30 she had therapy from 3-6. I thought she would tire and not be able to complete her sessions but she did amazingly well. She was hamming it up for Toby and Daniel the folks from the UK that are finishing up the filming for a documentary on the plasticity of the brain. The film should be done within the next month and we will get a copy to share with friends and family as it will most likely just air in the UK.
Thanks again for all of your support and love. It is our pleasure to share Cameron's journey with everyone as she truly is an amazing little girl. Take care. Shelly
After Cameron's first day of school ending at 2:30 she had therapy from 3-6. I thought she would tire and not be able to complete her sessions but she did amazingly well. She was hamming it up for Toby and Daniel the folks from the UK that are finishing up the filming for a documentary on the plasticity of the brain. The film should be done within the next month and we will get a copy to share with friends and family as it will most likely just air in the UK.
Thanks again for all of your support and love. It is our pleasure to share Cameron's journey with everyone as she truly is an amazing little girl. Take care. Shelly
Tuesday, August 28, 2007
Back to school!!!!!!!!!!!!!
Very hectic morning and day (especially for Shelly) but Cameron started back to school today. Praise God for all the progress and blessing we have received to this point since Cameron's surgery!!! Here is a picture from before school this morning--notice the camera next to her on the right--our film crew came back for the 1st day festivities. Shelly will follow up with more details later.
Tuesday, August 14, 2007
Two more weeks of summer
Hello everyone. Just wanted everyone to know that Cameron is doing very well. I can't explain what it is like to be with her each day and discover with her something wonderful that she can now do. She gets this look of surprise and satisfaction on her face and it is a beautiful thing to watch. Her social skills continue to improve as well. It is very evident with in the way she communicates with Caroline-they are adorable together.
Cameron continues to make gains in her therapies as well. She is swimming each week with Jenny one of her PT's and for the first time in a long time she went under water and did not swallow. This sounds so simple but it is truly amazing. Before Cameron got sick she was a great little swimmer (similar to how Caroline is now for those that have seen her swim). Once the developmental delays started she couldn't seem to grasp the concept of holding her breath even though it was something she really knew how to do. Cameron was also sized for a more permenant AFO (foot brace) that will still give her support but is more flexible, we should have it in a few weeks. Once school starts our days will be very busy but Cameron should be up to it as long as she can cat nap throughout the day. During PT today Katherine her therapist was stretching Cameron while she was laying down and she fell asleep. Cameron also got a special bike this past week based on a recommendation from her therapist. It is wonderful to have this bike and Cameron loves it if we can keep Caroline off of it.
Cameron's golf tournament is now a month away and invitations will go out this week via mail and email. We will also keep you posted here on her blog. Many thanks for checking in and we will continue to update you on our many blessings. Love ya, Shelly.
Cameron continues to make gains in her therapies as well. She is swimming each week with Jenny one of her PT's and for the first time in a long time she went under water and did not swallow. This sounds so simple but it is truly amazing. Before Cameron got sick she was a great little swimmer (similar to how Caroline is now for those that have seen her swim). Once the developmental delays started she couldn't seem to grasp the concept of holding her breath even though it was something she really knew how to do. Cameron was also sized for a more permenant AFO (foot brace) that will still give her support but is more flexible, we should have it in a few weeks. Once school starts our days will be very busy but Cameron should be up to it as long as she can cat nap throughout the day. During PT today Katherine her therapist was stretching Cameron while she was laying down and she fell asleep. Cameron also got a special bike this past week based on a recommendation from her therapist. It is wonderful to have this bike and Cameron loves it if we can keep Caroline off of it.
Cameron's golf tournament is now a month away and invitations will go out this week via mail and email. We will also keep you posted here on her blog. Many thanks for checking in and we will continue to update you on our many blessings. Love ya, Shelly.
Saturday, August 04, 2007
Hello again
Cameron is still doing great and is progressing daily beyond our anticipation before the surgery. She is walking mostly unassisted but does need to wear a molded plastic brace on her lower left leg to keep it stable. Her personality is completely back and she is having fun again at those pretending things kids like to do. Her attention span is also significantly better given that she can watch a whole movie or kid's show without distraction. So far no seizures since right after surgery so that would put us at nearly 6 weeks without one. This has to be the main difference in her abilities now as no sedatives have been in her system since the days after surgery. 
Thanks again to our Homebuilders Sunday School Class from JUMC for all the dinners since we have been home. We will definitely return the favor when others are in need. This awesome community and faith in God have made this experience one to share. Miracles truly still do occur. Praise the Lord!
take care, themotts
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