Monday, June 29, 2009

Summertime Fun in 2009

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

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

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:

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

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.

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"

more pictures for your enjoyment


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.

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.