Cameron's Blog

Summertime Fun in 2009

2009-06-29T07:30:00.002-04:00

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

2009!!! It was real but goodbye 2008.....

2009-01-07T14:03:00.003-05:00

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.

Back to school a success

2008-09-09T10:59:00.002-04:00

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

Our Busy & Wonderful Summer of 2008

2008-08-06T21:22:00.007-04:00

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

Victory Junction Gang Camp

2008-08-05T21:12:00.003-04:00

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

wow an update from the Motts

2008-05-21T20:19:00.002-04:00

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.

even more pictures

2008-01-04T15:35:00.001-05:00

little growler
santa's elfling
you go bday girl--7!!!!!!
scary, but I hear "wait until they are teenagers"

more pictures for your enjoyment

2008-01-04T15:26:00.001-05:00

ggggrrrrroooooooowwwwwwwllllllllll.....

recent picture--cousins with new dog

2008-01-03T15:23:00.000-05:00

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!!!

Merry Christmas

2007-12-23T10:01:00.000-05:00

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.

Looking Good

2007-11-02T19:50:00.000-04:00

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 night (it's hard to title these things)

2007-10-21T21:40:00.000-04:00

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

News from trip to Baltimore.

2007-10-17T21:19:00.000-04:00

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

Heading to Hopkins

2007-10-12T18:56:00.000-04:00

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.

Almost 4 months post op

2007-10-07T21:28:00.000-04:00

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

Caring for Cameron Golf Tournament

2007-09-16T15:08:00.000-04:00

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

Amazing Cameron

2007-08-30T12:37:00.000-04:00

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

Back to school!!!!!!!!!!!!!

2007-08-28T16:10:00.000-04:00

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.

Two more weeks of summer

2007-08-14T20:32:00.000-04:00

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.

Hello again

2007-08-04T14:26:00.000-04:00

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

Home and loving it.

2007-07-23T22:09:00.000-04:00

Hello everyone. Sorry to keep you waiting so long but last week was crazy. It is great to have my mom here to help with the adjustment of being home and to shuttle Cameron to therapies. Cameron is doing great. We had a rough start last week with moodiness, lethargic, loss of appetite, and at one point she threw-up. At that point I was not taking a chance and I took her to the ER at Baptist. After almost 7 hours, a Neuro consult, blood work and a CT that was reviewed by Hopkins all was well. I was concerned about one medication that Cameron is taking and the side effects or the possibility that pressure was building in her brain due to fluid buildup. On Thursday she had a really strange dizzy spell and ran a fever that night. There is no telling what was going on but all we know is she is much better now.

She had a restful weekend with some fun activities mix in. Our next door neighbor had a birthday party and Cameron wanted to be right in the middle of the activity. Normally she would not care where the other kids were sitting or if the presents were being opened but she did on Saturday. It is truly amazing to see Cameron interact with other children, talk with her sister, work with therapist and even watch TV. TV never used to hold her attention b/c she could not follow the story, now she loves it like every other kid.

She is now walking really well on her own but she prefers to have you hold her hand and walk really close by. She is doing pretty well getting up stairs and still needs help getting down. She got out of her bed unassisted, she is starting to dress herself a little more each day, she is doing water therapy and the list goes on. As each day passes we are truly thankful to God for this miracle. Never in my wildest dreams did I think that Cameron would be doing this well. Thanks again for checking in and we will post some great pictures soon. Love The Motts.

Update on Cameron

2007-07-19T17:32:00.000-04:00

As some of you may have heard, Shelly took Cameron to the emergency room at Baptist yesterday. No real emergency except that Cameron threw up and that is one of the things on the list to look out for in combination with some mood issues she had the day before.

She had blood work done and a CT scan and the preliminary findings were they did not find anything abnormal. The CT scan is being sent to Hopkins for them to look at and Baptist now has the ones Hopkins sent me that were the post-surgical ones they took. So we got the docs both in NC & MD looking at everything so we are in good hands.

Cameron had some dizzyness today but when I got home she seemed fine. Maybe there is just still some adjustment since such a serious surgery only a month ago but we are not taking chances. Hopefully no news is good news but we will keep you all more updated in the days to come on the blog. Our home internet has been down so Shelly has not had any access and my work has been busy. The home net is back up (at least for now) so expect another update tomorrow from Shell.

love, Casey and all the motts

Were Home

2007-07-16T21:32:00.000-04:00

Hello everyone. Sorry for being out of touch but, we have been getting settled and unpacked. We got home on Friday and had a great night with Nicole her CNA. Saturday was spent with Joe Mott and the Frenches over a wonderful meal. Sunday we went to church and a friends b-day party at the Natural Science Center (happy b-day Wesley). Cameron and Caroline had a great time but all of the activity and walking really wore Cameron out.

Today Cameron began her evaluations at her "home" therapy center in High Point. It is so good to be back with this team of folks and I am really excited b/c they have a pool which we were not aware of. Each Monday morning Cam's will get to swim with Jenny which we have heard can really make all of the difference to her recovery. Cameron had OT and PT this morning and then Speech with the school system at 2:30 and then private speech at 6:00. This was a total of about 3 1/2 hours so it is still pretty intense for her. She took two naps today and fell asleep quickly. Her stamina is building each day and I know that all of this will prepare her for the coming year.

It is really exciting to see all of you see Cameron for the first time. There is such relief and amazement in your eyes and your comments as her recovery is truly hard to believe. She is so bright and cheery, especially in the morning, she is walking very well with her brace on and she looks really good. One thing that I have really noticed with Cameron is her memory over the past couple of days. It used to be very hard for her to remember what she ate for breakfast, or who she saw or what she did yesterday. Now she is bringing up funny things that she saw or did yesterday and she can remember meals and events. God is good and none of this would be possible without him. Love you, Shelly.

enjoy some pics

2007-07-11T20:18:00.000-04:00

No significant news to report but some nice pictures from the last couple of days. Hope to see many of you this weekend and all my Bank of North Carolina buddies next week!

take care, Casey & themotts

FOUR MORE DAYS

2007-07-10T12:17:00.000-04:00

All is well and Cameron continues to work very hard. She now has a place to park her chair on the therapy floor so that she can walk to each session versus riding in her chair. She is really excited because she gets to go swimming today with one of her therapist at a nearby pool. Swimming should really help Cam's so we are excited to see what they work on with her.

Dr. Jallo came in this morning and took out the remaining stitches and told us he wanted to see us again in September for a follow up and to review and updated MRI. I am very interested to see her new MRI pictures with the right side gone. As I have said earlier it almost seems like the surgery didn't happen b/c she has recovered so well. He also gave Cameron to OK to swim and get her hair wet within two weeks.

On another note one of our neighbors and a contractor friend of his have been working on a room for Cameron. This will be a place where she can work with me or others on therapy type activities. We are really excited to get home and see the finished product. Thanks Louie.

We also wanted to thank all of those who have helped to take care of our animals, water plants and mow our lawn. We are truly thankful for all you have done to keep things going while we were away.

A lot of you have asked about the "Caring for Cameron" golf tournament and as more details become available we will keep you posted. Invitations will also be sent out for the event. Love you all. Shelly

Fun day out.

2007-07-08T17:51:00.000-04:00

Today we checked Cameron out after her am "project work". We went back to the Children's House and met up with a family whose daughter had a hemi at the age of three two years ago. This family has four daughters so there was plenty of entertainment. The Jagger family joined us as well and there was plenty to talk about. The little girl Abby and Cameron sat next to one another over pizza and really carried on a conversation which was fun to watch. Abby told Cameron that she was brave when she had her surgery and Cameron told her that she was brave too. Lots of good conversational skills like head shaking and verbal cues from Cameron were going on and it was really a great socialization task for Cam's. Having the girls there really encouraged her to get up and move around and to stand for longer periods of time. Therapy dogs were also visiting the house and this really got Cameron excited. She started walking so fast I had to really work to keep up with her.

Yesterday, mom, dad and Caroline came and Case and I took Caroline out to the Inner Harbor to enjoy the sun and have a little one on one time. After the train ride and a merry-go-round ride Caroline fell fast asleep and we were able to enjoy a quite lunch. Cameron had a nice change by having the Grandparents here so everyone had a great day. We have been chanting "one more week, thumbs up" and we can't wait to get home.

We wanted to thank everyone for all of the wonderful gifts, food, cards, prayers, visits and caring words sent over the blog. We love you all and we continue to thank God for the blessing of Cameron and her successful rehab. All our love, The Motts

Happy Friday

2007-07-06T17:52:00.000-04:00

Hello friends. The past two days have been great for Cam's and she continues to make progress. Yesterday her OT was in her room in the morning to help her with dressing/washing skills. As Cameron was brushing her teeth she also started putting her fingers in her mouth which was strange behavior, so I told her to stop. Upon further inspection I realized that she had actually lost a tooth during brushing. Of course it was nowhere to be found so I am sure that she swallowed it. We did however leave the tooth fairy a note so that she would understand the our problem and she visited anyway.

The film crew was here to film their last day of Cameron's "project work" as we call it and they were really amazed. I guess it hits you when people who have not seen her in two weeks are shocked by the progress.

Another family contacted us today that is here, at Johns Hopkins, for another family member but their daughter had a functional hemispherectomy two years ago in Georgia. She is Cameron's age, her name is Abby, and we are going to have lunch with them on Sunday so that our girls can meet. I am really excited to meet them as there daughter has done very well.

Dr. Hartman just came in and talked with us about Cameron's pathology and it was very interesting. She was confirmed Rasmussens but it looks like a mild case. They also saw cells that looked liked cortical dysplasia. This is important because it may be the reason for Cameron's severe seizures and as Dr. Hartman said clinically Cameron is one of the worse cases they have seen. If you have cortical dysplasia on one side you may have those irregular cells on the other. All of this means that they will not be taking Cameron off any medications anytime soon "like years". We are ok with this as currently the medications are not causing her any problems other then hair loss. This is all really complicated and hope it makes sense to everyone. I also asked if this information gave them any concerns and he said "no".

Miss everyone and we will see you soon 7 days to go. Shelly

Cameron's day out and other pictures--happy 4th!!!

2007-07-04T19:20:00.000-04:00

Here are a few pictures including a couple from our time with Cameron at the Children's Home today. Sorry we had bad batteries while we were on our shopping expedition and did not get any pics there. We will get more from the outside when Caroline is here to visit her sissy this weekend. I hope you all had a great 4th of July--we sure did especially the time out with Cameron and the family nap at the Children's Home with daddy snoring.......

the split treadmill--Cams in action

love ya,
the motts

The 4th of July

2007-07-04T16:04:00.000-04:00

It doesn't seem like the 4th of July other then the fact that the area around the hospital and the hospital itself is very quite. Cameron was able to leave on a pass today for six hours and it has been wonderful. We took her to an area called WhiteMill which is similar to Friendly and we just browsed and ate lunch out. She enjoyed it but even this little adventure wore her out. We came back to the Children's House and she has been sleeping since 2:00 and is still out cold. I think her body needed this extra day of rest after the past two day and hopefully this will re-energize her to work hard over the next couple of days.

Cameron is beyond chatty and has really been focused on imaginative play which is really incredible to see as this is something that tended to disappear with frequent seizure activity. Speaking of seizures we have not seen anymore other then the two from last week so we feel very blessed. It is easy to see the miracle in Cameron and we thank God daily for this blessing.

Just a note on little Caroline. She is doing well at GiGi and Papa's but is looking forward to coming here on Saturday. Casey and I plan on spending the day with her while my parents are here. My sister is also coming up for the night tomorrow which we are really looking forward to. All of these little visits make the time pass quickly and it is hard to believe that we only have next week left. Love you all and Happy 4th. The Motts

Tuesday July 3rd!

2007-07-03T07:22:00.001-04:00

Hello dear friends. Cameron had yet another great day and was very tired after she completed her afternoon. They increased her PT sessions to three times a day so she biked, walked on the treadmill, and had a regular session. They now have Cameron wearing a foot brace when she is walking which prevents her from turning and dragging her left foot. The only problem is her shoe no longer fits. Casey and I each made a trip to Wal-Mart to purchase some new shoes and we ended up buying three pairs to get the right combo between the two feet (12 1/2 on the right and 13 1/2 on the left). Thanks to the Alpha Phis and the Copley's for the Wal-mart cards they came in very handy for the shoe purchases.

Cameron is really chatty with everyone and it amazes the doctors. She asked Diana (one of the neuro team) if she lived around here, did she have toys, and could we come over. Then Cameron proceeded to shower her with compliments- she must really want to go to her house. She is also making more progress with her arm and the OT is working on writing with her using a program that the school system back home was using.

We are set up for all of our therapies back home where Cam's will continue OT, PT and Speech. Our friends at the Millis Center are wonderful and I am glad that this is in place. Cameron will also receive about two weeks of speech from the school system three times a week when we arrive home. I hope all of this will allow Cameron to "catch up" some and to be prepared to have a successful year at Florence El. which is the school she will attend next year.

Please continue to lift up the Jagger Family. Their little girl Tessa (same surgery as Cam's) got out but had to be re-admitted due to a temp of 104 and swelling on her brain. They are very strong and are taking things in stride but it was an unforeseen setback. Tessa little body is working hard to fight this infection and I will keep you posted on her progress.

Take care and everyone have a fun and safe 4th. Love The Motts

Happy Monday!!

2007-07-02T10:55:00.000-04:00

Cameron is already hard at work this morning. She is doing great and did a couple of laps around the building on a special bike. You go girl!!!!!!!!

Sunday morning

2007-07-01T10:35:00.000-04:00

Morning. Cameron has had a wonderful weekend and is close to a normal routine without multiple naps during the day. She continues to get stronger and her left arm is making progress as well. She can slide her arm across a table or tray and as she likes to say "she is making a rainbow".

We had her STEER meeting on Friday which is similar to an IEP. All of her therapist, social worker, and docs get together to discuss her progress. Our checkout date will be on July 13th at 11:00 and we will head directly home so that Cameron can get her nursing care to ensure we don't lose her CAP services. I think they would like for us to stay one week longer but I feel like these services are very important and I also feel very comfortable with Cam's at home therapist at the Millis Center. The Neuro and Speech folks really think that Cameron could survive with assistance in a regular Kindergarten class which is wonderful to her. Her response times and overall abilities are much better then when they did the evaluation in February. Cameron will still be in the Life skills class with her wonderful teachers that know and care about her but I am hoping she can start out spending half days with the reg. class.

She is having lost of fun playing in the playroom and is able to be involved for longer periods of time. She is now wearing a foot and arm brace and they are using some special tape to help her with her shoulder. Not quite sure how it works but I'll keep you posted. Casey is here so I will get some pictures up of Cameron soon and send more updates now that I have a computer. She looks like sweet little Cameron only with a crooked smile. The weakness on the left side of her face will come back as well but seems to show up more in pictures. All of the nurses and caregivers have fallen in love with Cam's as she is so easy going. She doesn't pretend to sleep as much when she doesn't want to talk however that is usually a cue that she is getting worn out.

Also, someone in NY sent us a package from Mrs. Fields but we can't tell whom it is from. Please let us know. Many thanks to everyone yet again for the continued prayers. Your cards and well wishes are wonderful and I can now imagine a day when I can share these with Cameron and she can read them all by herself and understand the magnitude of there meaning. Love you all. Shelly

Happy Friday--Cameron is doing great!!!

2007-06-29T16:04:00.000-04:00

It has been an amazing week for Cameron, and she continues to make progress in her therapies. Physical therapy has shown the most noticeable gains, and Cams is walking quite well. She works on the split treadmill each day, and has built up to four minutes by her third series of reps each day. She understands the progress she is making and is becoming increasingly excited with her success. For instance, during PT today she walked really far and got really excited about it.

Occupational therapy is more challenging for Cameron, but she is making progress in this area as well. She was fit with an arm brace today to protect her ligaments from getting stretched too far. They also are going to use a special tape for her shoulder, which is tending to droop and could also stretch the ligaments. And they basically don't want that to happen because once the ligaments get stretched, then she won't be able to regain her muscle strength as easily.

Speech is going well, and her therapist is focusing on comprehension and memory activities. Cameron is also drinking all of her liquids with a thickening gel to help control her coughing when she drinks, which is wonderful because Cameron coughs all of the time with everything that she drinks.

Cameron is really enjoying her therapeutic recreation sessions and has started attending group sessions as well. She has at least three hours of continuous work each day, so she's basically in therapy from 8:30 to 11:30 solid. It's exciting because she's building up to not having to come back to the room to lay down for 30 minutes and get right back up to go to another therapy session. This obviously wears her out, so she's sleeping much better at night.

Medically, Cameron is also doing well. She did experience a second seizure today, but it only involved her eyes moving to the left for a very short period of time, maybe 10 seconds. She was a little shaky after this, but recovered well. Dr. Hartman is going to increase her Depakote dose, which should take care of these little breakthrough seizures that she's having. When Dr. Hartman was visiting this afternoon I asked him how Cameron was doing compared to other hemispherectomy patients, and he said she's above the curve, she's doing better than the average child that comes in to have a hemispherectomy. They are very excited and pleased with Cameron's progress so far, so that was very exciting to hear.

Sometime today we will have a better idea of how much more time we'll be here, but we're anticipating another two weeks.

Love, the Motts.

p.s.--thanks again to Stephanie for dictating this from Shelly--you got skills girl!!!

2 weeks from surgery!!

2007-06-28T10:49:00.001-04:00

This morning Shelly said Cameron is acting more like herself now. I can't wait to see them again on Saturday. It has been nice to be home and at work but kinda lonely without them here. Hopefully our stay in Baltimore is in the last phase as Cameron has made great progress with the therapy. Shelly is meeting with all the therapists tomorrow afternoon to get their complete evaluation of Cameron. We will post another blog once we have that info. Thanks for checking!!!

luv yas, themotts

Cameron Tuesday update from Shelly--thanks Steph!!

2007-06-27T08:23:00.000-04:00

The past couple of days for Cameron has been incredibly hectic. She begins her therapy sessions at about 8:30 each morning, and they last up until dinnertime each afternoon. She's getting physical therapy, occupational therapy, speech and language, therapeutic recreation and neuropsychology each day. It's been amazing to watch her progression each day.

She is already walking with assistance and has quit complaining about it. Initially, she was really complaining about having to walk and being out of her bed, and now she's doing really much better. In fact, she had been playing possum for the first few days whenever a nurse or therapist would walk into the room. I would have to tell them that "She is really faking you out." They would all fall for it every time, thinking that she was asleep. So I have had to reveal her little secrets so that she is forced to work hard.

Today they actually put her on a split treadmill. It's a piece of equipment that really helps children that have had hemispherectomies or stroke victims to not walk with such a noticeable limp. Because what happens, as in Cam's case, is she has strength in her hip and shoulder muscles on the left side, so that's what has initiated all of her movement, but that's also what creates such a noticeable limp. Now they have this equipment that really helps with that and it's really amazing.

Cameron is eating incredibly well and has her old appetite back. The funny thing, though, is that this morning Cameron took her medicine on an empty stomach, and during one of her speech therapy sessions that I was not present for she got sick. I have to admit I was happy that I didn't have to deal with it, but I felt very sorry for the speech therapist. But the rest of her therapies today went incredibly well, and she's sleeping much better due to all the activity during the day. All her hard work has made her sleep so much better than she was.

Around 2:00 today Cameron did have a seizure, but it was very brief, like a 12-second seizure. The neurosurgeon and neurologist were not overly concerned at this point, but it's definitely something we need to watch. They also know that there was some residual tissue left behind on the right side which they could not get because of a large blood vessel, as we mentioned before; but they really don't know at this point, so we will have to watch it and see how it goes.
Cameron also had her staples taken out today, which was wonderful because they were incredibly itchy and uncomfortable for her. She was anxious to get them out. They were driving her absolutely crazy. It was relatively painless. It didn't hurt very much until they got down to the staples that were down around her ear and cheek area, and those were painful but it didn't last very long.

The doctors have all said Cameron is doing very well. We fell like each day we're making a little bit more progress. It's been comforting to be in the hands of all of these wonderful therapists who are so incredibly skilled. We'll give an update probably in a couple of days, or if something exciting happens tomorrow we'll let everybody know. Thank you for continuing to pray for our family. We really appreciate all the cards we continue to receive and the words of comfort and support.

love, Shelly

Brief update

2007-06-26T12:02:00.000-04:00

I spoke to Shelly and Cameron (hey daddy) this am. Cams had a good day yesterday without problems. Naturally she was very tired at the end of the day so Shelly said she had a good night---better sleeping for her. She is on antibiotics now for a confirmed urinary track infection (Shelly has been saying that to them) and her stomach is starting to feel better. They always say you know your kids better than any doctors or nurses do--very true. Happy Tuesday!!!!! I might post a more detailed update later today if Shelly has more time to talk.

love, themotts

Cameron update

2007-06-24T20:55:00.000-04:00

Spoke to Shelly. Cameron was up a good bit of the night again but she is hungry--another great sign to back to normal for her--pbj at 2 am is not but a good appetite is. Little slept for mom but mom-in-law there 2night for Shelly to get good zzzzzzzzzzzzzsssssss with Caroline back at the Children's Home. Cameron in sitting up better but we still have to support her. Her neck muscles are strong and she is moving her head well. Her hip muscles are starting to come in and she is moving the left leg forward.

A real Monday for Cams tomorrow--9-4 of hard work, break for lunch. Pray for her strength please. Have a great week!!

Love ya'll---themotts

Daddy's home (for now)

2007-06-23T18:30:00.000-04:00

I am back in Jamestown!! You never know how much you like your home until you are away for a while. Even though it has not been that long it seems like longer b/c of all the activity of the last 2 weeks. Thanks to everyone who has participated in keeping care of the house (pets mainly--thanks Richard!) and the lawn. Looks like we are in another drought so I am watering this evening. The simple pleasures such as taking care of your homestead have a new feeling now--I guess much weight has been lifted off now that Cameron is in the rehab facility on the road to recovery. Don't take anything in life for granted especially the simple freedoms we have here in the good 'ole USA. The only downer for the day and for the last couple of weeks is that my luggage was lost today on my flight home--first time for me. No big deal--it should show up at the house later. Maybe certain aggravating things such as this will be less irritating going forward for us. Cameron's safety and the possible miracle of her recovery is an amazing example of the power of prayer and of the peace available through faith in God. Daily struggles happen to everyone--the difference is what your attitude is about it...........

Just talked to Shelly. Cameron had another good day and is complaining about the therapy--great to hear actually. Same personality as before :-) She will have another light therapy day tomorrow. Monday the full load starts with therapy on and off all day next week from 9-5. This will be difficult week as Cameron builds her strength back. Please pray for Shelly and her mother Pat as they take care of the girls in my absence. Most of the therapy will be done without them in the room but they will have to deal with the tired Cameron or the feisty Caroline after. I am flying back next Saturday and will stay until it is time for us all to come home. Given Cameron's progress so far it might be during or after the week of July 4th--amazing for sure!!!

Our friends Frank & Elizabeth visited them today--Shelly was thrilled to see our old friends. We have had many caring visitors during our stay including Stephanie, our neighbor Beth, JUMC youth minister and good friend Jay, my cousin Susan, Shelly's sorority sister Julie (Elizabeth (Clifford) is one too--go Pirates!!!)--if I missed anyone sorry, you are stilled loved. Finally we made new friends in our Great Britain based film crew of Kate & Toby. In the short time we spent with them we developed a bond that will last a lifetime--among many other things they actually filmed Cameron's surgery. They are great people and it goes to show that our neighbors across the ocean are not so different than us in many ways. I hope to introduce Toby to Jeremiah one day--I will tell you the story if you ask---funny uncontrolled laughing fit we all had at dinner one night. Anyway at least we have a place to stay in London if we ever make it over.

Anyway enough babbling--Happy Saturday night!!! Don't have too much fun kiddies!!!!!

take care, Casey

new pictures as promised

2007-06-22T20:42:00.000-04:00

sitting up!! #1!!!!!
standing with assistance!!
wheelchair ride!!

movie star!!
another picture dad?!

daddy's angel :-)
start 'em early--outside a bar on our "night out"

We are in Rehab

2007-06-22T19:14:00.000-04:00

Cameron has had another full day. She worked with the PT at Hopkins and she really worked Cameron. She walked her and had her do weight bearing activities as well. Her central line was removed and her feeding tube was also removed. Nutrition is a huge issue and they want Cam's to eat well so that she will have the strength for her busy days. She has some therapy scheduled for Sat and Sun but the real work begins on Monday and they will work her from 9-4 each day so hopefully this will help her sleep better at night.

Cameron is very funny at times and mom and I got her laughing today while we made fools out of ourselves. Cameron is smiling more and continues to be more alert each day. She complains a little when she doesn't want to do something but she still does it anyway.

She just got sick a short time ago but I think and hope that is was because of a medicine that we had given her. Cameron has had a couple of focal seizures but the doctors don't seem overly concerned and we are not too worried either. We know we can't control anything and we don't want to be bogged down with worry and fear. We know that God is caring for Cameron and he will protect her.

We will go over to Dr. Jallo's office on Tuesday to have the staples removed which should be a pretty easy thing to do, so we have been told. The little girl Tessa I told you about is doing really well and I pray that they will be as blessed with a quick recovery. Thanks for all of your love, support, prayers, cards and packages. We love you all. The Motts.

Cameron to move on Friday

2007-06-21T15:41:00.000-04:00

Today has been an exciting day for Cameron. PT and OT came and were able to sit her up, then stand her up(with lots of support), and she was able to take a few steps with help. She took a wheel chair ride to the play room to see the fish and walked to Casey (all with lots of help) and she walked back to her chair b/c she was worn out. You can see her left leg trying to move as well and we continue to be impressed by her determination.

Cameron also got her hair washed, got a bath, and has been eating more and more each day. She was smiling and joking around with me and my dad today and when I offered her coffee she said "that's hysertical", I rolled over laughing. She is in good spirits and the best news of all is that we will be moving to Kennedy Kreiger (KK) tomorrow so that she can begin her intense rehab. This is great news b/c they had told us we would have to wait until Tuesday.

These folks at KK remember Cameron from her testing in February and they are working on a plan for Cam's. They are in thearpies from 9-4 with a lunch break so she will be busy. They have a split treadmill for Cameron to work on which is great as this will really help Cameron have a more normal gate. So all is well and we continue to feel blessed.

Just a side note Casey and I will be married for 11 years tomorrow. We will celebrate tonight as mom has volunteered to sleep with Cam's and Stacy will watch Caroline. Casey will be flying home on Saturday and returning the next Saturday so hopefully he will be able to see everyone. Tessa the little girl I told you about is doing well in surgery and has a couple more hours, I will give you a better update tomorrow. Take care all and we will send some more amazing pics tomorrow as well. Take care. Shelly

Wednesday evening.

2007-06-20T19:10:00.001-04:00

The past couple of days have been very busy for Cameron. The biggest news is that Cameron sat up today for about 2 hours. This was a pretty amazing thing to watch and we were all thrilled. She also tried to walk a little but she became very uncomfortable. Cameron is very altert and she knows what she wants and is very aware if mommy or daddy are not in the room.

Beth my neighbor and Julie my college buddy both came to visit today as well. When I told Cameron that Beth was coming, she later asked me "where is she" and I said who and she said "Beth", she asked are nurse "are you my nurse" and when the nurse asked Cameron where she was Cameron said "where". This was funny b/c Cameron knows we are at the doctor but the question just seemed strange to her for some reason. Dr. Jallo, Dr. Carson, Dr. Vining and Dr. Hartman all came to see Cameron yesterday so we feel well taken care of. We have been taking lots of pics and Casey should be able to post some new photos of Cameron and they will amaze you.

Cameron amazes me each day with her strength and courage and she is a hard worker so I know she will be fine. We know that we will be moving to rehab on Tuesday when a bed becomes available for her. We are ready to get her moving and working hard.

Yesterday we also met a family that is here for the same reason but a there daughter Tessa has a different disorder. I plan to be with them some tomorrow and hopefully we can help them in some way. Our SS class gave us a "BIG" basket full of goodies, which have come in very handy by the way, and one of the items was a journal. This is the 1st time I have journaled but it has been very helpful to me and it may be helpful to this family as well. So please pray for Tessa Jagger who will be having her hemi tomorrow.

Mom, Stacy, Caroline and Shelby have all joined us today and we are all at the CH together having a wonderful meal that was donated by a local real estate group. This makes life very easy as we only have to come across the street to eat and relax a little. Mom is with Cameron so it is nice to be with Casey and Caroline in a comfortable setting to help us re-energize. Caroline loves this place and is really happy which is also very important to us.

Cool mama is chillin' in this pic..............

Happy Tuesday--sleep is good!!!!

2007-06-19T09:18:00.000-04:00

Shelly stayed with Cameron last night so I was able to go get a decent meal--Veal Marsala (magnifeek!)--a couple of beers and a full night sleep. We now can start the rotation and Shelly will do the same tonight. Caroline will be back tomorrow with Gigi and she will love the house we are staying in--it's is not called the Children's House for nothing. Cameron had another good night of rest and continues to make progress with more of her typical comments. She doesnt like the boot she has on her left leg to keep it straight so she must have feeling over there. Any complaining is a good sign for me. The therapy will be intense eventually but Cameron and we are up for the challenge. The strength God has given us is amazing and testiment that if you have faith you can get through anything. I hope this blog find you all well and enjoy your Tuesday--my favorite weekday.

take care, cmott

Monday afternoon

2007-06-18T17:18:00.000-04:00

Ok everyone this is where we can be reached for the next few weeks:
The Childrens House
1915 McElderry Street
Baltimore, MD 21205
410-614-2560 Room 207

As Casey said we got in to the Childrens House and we only have to walk across the street to get to JH. Cameron has had a great day. As Casey said she is beginning to wake and spoke alot today. I was reading Are you my mother, and she said "we have that book". She also said "is it time to go home", "yes ma'am" (what good manners), and answers yes and no questions. She really does seem pretty comfortable and an OT person came to see us to show us some exercises and massage treatments to work on until she is more alert. We are also in a regular room now which is really wonderful. I thought I would be scared to leave ICU but it is a more peaceful and private setting.

The doctors removed Cameron's drain that was coming from her head (a little painful) and they removed her arterial line which only leaves the line in her upper chest area and a regular IV. Slowly we will get there. We also saw movement in Cam's left leg and slight movement in her left arm. Praise God for each day. So far there have been no confirmed seizures or really even anything that looks like a seizure so we will still pray for our miracle. We love you all. Shelly

whoops & hurray

2007-06-18T08:54:00.000-04:00

I got to Camden Yards at 5 yesterday just as the game was ending. Sunday games always start at 1:30 as I was told but I swear I saw on the internet in started at 5pm. I hope to catch an Orioles/Yankees game which is the next home series and hopefully Caroline can come with me then.

No big deal cause the 1st piece of good news is that we got into the Children's Home last night. Very affordable place to stay and right accross the street from Hopkins. A day or 2 earlier than we thought so we are very pleased. Thanks to the Daubenspecks for packing up our hotel room to help with the move. They had dropped me off at the baseball game so I was able to go ahead and get us checked in over here since no game for me yesterday. America's pastime can wait another day.........

And the best piece of news is Cameron is beginning to wake up. Early this morning after a restful, peaceful looking night of sleep for her, the nurse woke her up when she was cleaning out her throat. She said "I don't feel so good" which might be the understatement of the year. She had some small sips of apple juice and when I asked her if she would like to rest again she said "all done?" Cameron is back--look out world!!!!!! Her pulse has come down a lot and is low especially when she is resting. I think after all this trauma and foreign things being put in her veins her system is finally settling down. She looks great and did manage to open her eyes a bit while we were talking. We will probably move out of the PICU into a regular room either later today or tomorrow. It will be nice to sleep in the room with Cameron. I did have a better setup last night but 2 hours must be the max I can sleep in a chair that is not a recliner.

Here are some pictures. On the one of the side of her head you can see the staples she has above her ear. The other staples are on top and go to the back of her head. Hardly any hair was shaved. By the time we come home we have been told that you can hardly notice them at that point---amazing!! The PICU staff is great and we will have to pay them a visit once Cameron is walking again. Suffering, prayers and healing...all part of God's plan to draw us closer to Him and each other. Happy Monday!!

take care, themotts

Happy Father's Day!!

2007-06-17T12:24:00.000-04:00

I still have to call Joe Mott b/c he has not caught the internet or email bug yet--that is another project back home once things settle down a bit.

My first all-nighter in a PICU was interesting. Cameron got her breathing tube out about midnight and they asked that I leave the room for that. Soon after they came out and said she did great. Before for this they had slowly moved her head from her side close to "midline" so her face is up now. The swelling in her eyes in starting to come down and our little girl is starting to take her shape again.

I am amazed at the patience and kindness of the PICU staff. 12 hours shifts are grueling but you can see how they get through it with all of the teamwork. Everyone is helping everyone and I think that is one thing that might make Hopkins different. Anyway Cameron did not move much while I was in there but I hit a wall about 2 am and had to find some place to rest a bit. I created something to prop my feet on and awoke 2 hours later with a crick in my neck. Amazingly this did the trick and I was back in her room at 4. Around that time one of the babies next to Cameron was having a fit--please say extra prayers for these tiny people. Coffee was calling me so I made an escape to get hidrated again. 2 cups later and then it was 7am and shift change. Shelly actually called for the update at that time cause my cell phone was off. 7-8 is the only time we have to be out so I went downstairs to wait for Shelly. I nearly dosed off again sideways in a chair and Shelly had a delay in getting to the hospital. It was 8am before I knew it so I went to see Cameron one more time.

A new nurse in there told me the previous shift told her Cameron did better while I was there. During my little nap while I was out of the room I think Cameron jerked her leg up and they questioned me if I thought that was a seizure. They did not see and funny readings so I don't think it was but more of a release of some bottled up energy. I think my presence there soothes her and maybe that is what they meant that she does "better". PICU night 2 should be better and I have found a new place to actually lay down for a bit if needed :-)

Well, off back to the hospital now. Jim (grandpa) and Shelby (Shelly's niece) are the new visitors today. My family is gone now and the Daubenspeck's will go back to Woodbridge tonight with Caroline. Shelly can have some nice alone time at the hotel tonight but 1st it's baseball time for me!!!!!! Orioles/Diamonbacks tonight at 5pm. Very exicted as I have heard Camden Yards is an awesome ballpark. Nice father's day indeed................

talk to you tomorrow, Casey

p.s.--we will figure out how to post the pictures at some point soon. Jay got some tapes for my video recorder too--thanks my friend--nice suprise with your visit.

Cameron's Saturday

2007-06-16T22:13:00.000-04:00

Cameron is doing well and had a pretty good day. Basically, she was in the same state and the plan for today was to keep her bed flat but to move her head to midline today, meaning she would be lying flat on her back. They also planned to remove her breathing tube. All of this was to take place at 5:00 but they are just in the process as we speak. It is 10:00 now and they should be complete by 12:00. Cameron is doing enough of her breathing on her own to make the doc's believe she will do well throughout the process. They really take things slowly which is comforting. Casey is sleeping at the hospital tonight and says things are going well but that she is irritated. Cameron is still running a mild fever and they are not worried. She basically is doing very well and the doctors are pleased with her progress but she will stay in PICU until Monday before moving us to a regular room.

Jay, our youth minister and Casey's 1st cousin Susan came to visit today which truly breaks up the day and helps time pass quickly. Mom, Stacy, Joe and Jan are all still here as well and we are grateful for their support. Stephanie and Emma just made the long drive home and they are safe and sound as well.

We have really enjoyed reading your words of support and sharing them with our family ............thanks.

I'll send another update tomorrow. Our love, Shelly.

Were you wondering about the cameras?

2007-06-16T21:59:00.000-04:00

Just to let everyone know, there is a group from Granada Productions from the UK that is following Cameron's case. Shortly before we were scheduled to come to Baltimore, we were contacted by Hopkins to see if we were willing to allow Granada Productions to follow us to help them understand the plasticity of the brain (how things transfer to the good side). I talked with Casey and prayed about it and we both knew this was something we wanted to do. Mainly, because we knew that Cameron would get extra attention if she was being followed on film. Also, we are glad to share our story with others in the hopes that they may benefit in some way. It has really turned out to be a blessing in many ways . Toby and Kate (the film crew) have been with us for a week or so; they came to our home in North Carolina and filmed there and even filmed the prayer service at our church. It has been very theraputic for us to talk about our emotions throughout the process. Toby and Kate have been very sensitive and respectful to Cameron and our family. The film is being produced for a show similar to Discovery Health in the UK.

Our church, as many of you know, had a prayer service for us the day before we left and the crew was there so I wanted to explain. It was a very moving experience for us and Toby and Kate were also very moved. This church service was amazing and really sent us off under God's protection.

Love you all.

Post surgery day 1

2007-06-15T20:03:00.000-04:00

Hello our dear friends!

All is well here in Baltimore. Cameron looked good today and they said she is doing well and has been the whole time. She is still heavily sedated to keep her still. Her head will remain on her left side through sometime tomorrow before they move her to "mid-line" or on the back of her head. This time just on the left is to allow fluid to build up in her empty space so the other side does not shift and cause damage. The Hopkins staff is very thorough in everything they do and the slower they take things the better to assure Cameron's safety. She will be in the PICU through the weekend and we might move to a normal room Monday. If I can figure out how to do it I will post a picture of her current state at some point for those who can stomach it. Her eyes are swollen shut right now but the overall swelling is not as bad as we had anticipated. She has slight bruising around her eyes but none elsewhere that we can see now. Of course there is a large bandange covering her wound and the top of her head.

We are back at the hotel again tonight and this might be the last night the rest of the family is together here at the same time. When Cameron is awake we will be at her beside for sure--shifts will start then. Since they talked about moving her to midline we assume she will wake up some tomorrow but are not real sure yet. If the swelling in her eyes comes down she surely will open them as she has noticeably tried to no avail so far. I can feel her energy and strength so the days ahead will be more challenging to keep her as still as possible as they begin to eventually back off the sedation. We met the head of the rehabilitation team today and he was really nice as everyone else on the staff has been--some of the rehab will start once she is moved to a regular room--the majority will be when she is eventually moved to the Kennedy Kriger Institute which is accross the street. My brother Joe and I took Caroline over there to their lobby today--they have an awesome saltwater fish tank there and also a frog tank and other nice kid's things--Caroline had lots of fun of course.

There is a large statue of Jesus in one entrance to the hospital and Caroline prayed to him today for Sissie's safety. Cameron's prayer card that Stephanie Fischer made is sitting at his feet next to the flowers other people have placed there. What an awesome symbol of who has his arms around us in this journey. Thanks for your continued prayers!!!

Much love, themotts

Cam's first night

2007-06-15T06:08:00.000-04:00

Morning. I just called the PICU nurse and she said that Cameron had a good night. She was waking periodically and moving her right side. At these points they shoot Cameron a little pain medication and send her back to sleep. She is also itching when she wakes which is caused by the meds so they are also giving her meds for that. She was very swollen yesterday and now they nurse is telling me her eyes are completely swollen shut. I will not lie when I say that it is hard to see her like this and it is very hard to be away from her right now. So with that said we are heading over there now to be with her so that she can feel our presence and support. As I went to bed last night I envisioned angles over her bed keeping a close watch on her.......that was the only way I could close my eyes.

Peace be with you my friends. Thanks so much for lifting us up. Shelly

What a day! Cameron is such a strong little one....

2007-06-14T22:22:00.000-04:00

Our angel and one of God's special children did great today. In the last report--every 2 hours throughout the day--Dr. Vining said she was "rock solid" throughout the procedure--total of about 8 hours. They removed most of the brain tissue on the right side and only left tissue that would have been a danger to remove but disconnected it instead to not be able to spread a seizure. The removed tissue definitely was diseased (noticeable atrophy) so this finally confirmed we did the right thing for Cameron's future. It is amazing that they can do this and the rest of the brain compensates mostly for the lost function eventually. She will remain in the PICU for the next few days and tonight she is asleep and will be afixed to her left side allowing the spinal fluid to fill the space left after the removal so as not to allow the other side to shift causing damage. Everything explained to us by the tremendous staff at Johns Hopkins has made perfect sense. We were told to go back to the hotel and get good sleep tonight as the following days will require much attention to keep Cameron comfortable as she recovers. We are in the room and Shelly is already asleep so we will be back to see our baby early in the morning. God's grace is truly wonderful and we have been touched very deeply by the prayers, tremendous faith, and encouragement given to us by all of our dear friends and family. Caroline will be here tomorrow--thanks Stephanie!!--and we can't wait to see her. We will probably wait to take her to see Sissie b/c of the swelling Cameron will probably have tomorrow. Mainly to have her here in Baltimore will make our initial journey feel complete and start our new journey to Cameron's recovery and new life. Many thanks to Dr. Jallo, Dr. Vining, Dr. Hartman and all of the surgical staff for taking such good care of our special girl. Toby & Kate from our film crew even qualified us for a special private waiting room--nice perk for sure for our large family support network here. All of your prayers for Cameron's safety and the doctor's hands were answered today---praise the Lord!! Thank you for your continued prayers for her recovery and rehabilitation. With God all things are possible--we have evidence from today........more updates to follow and we will try to post daily during our stay in Baltimore.

All our love,

the motts (Cameron, Caroline, Shelly & Casey and Dillon & Amber back home)

Counting Down

2007-06-04T12:31:00.000-04:00

Hey. The Mott Family is preparing for our trip NEXT week. That is so hard to believe but time has been flying. Cameron is doing about the same and follows the same pattern most days. Here is a sample. She wakes up bright and cheery full of life and wonderful things to say. She can't wait to go downstairs to get her usual grits or cereal. After breakfast (it is about 6:30 or 6:40 at this point) Cameron takes all of her meds. Within about 20 minutes she starts to loose her spunk and energy due to the meds. Then around 7 she gives us a scare with her moring seizure. It is almost funny that it doesn't ever stop scaring you especially when she makes a loud noise. Then we either give her diastat or she takes a 20-30 min nap. Once she wakes up she is off to school. The girl is a trooper to say the least and we are all ready to end this particular routine and start a new one.

Cameron began Hyperbaric Therapy last week and we are doing it everyday this week as well. It is something that Dr. Cave in LA recommended to us long ago and thought that it would benefit Cameron prior to surgery. It basically gives her oxygen under pressure which allows it to absorb more easily into her system. There are a list of benefits and hopefully this will strengthen her system to allow everything to go as well as possible.

While we are up at Hopkins there will be a family coming about the same time whose daughter Tessa will also be having the Hemi on June 21st. She is only 17 months old and has a different disorder but it will be good to meet them during our stay.

Much love - The Motts.

Upcoming Dates

2007-05-25T14:29:00.000-04:00

Hey everyone. We have a couple of dates we wanted to share with everyone.

First, our church Jamestown United Methodist in J-town is having a Prayer Service for Cameron and our family on June 12th at 7pm. This is open to everyone and if you are able to attend we would love to see you there.

We also have a date for Cameron's golf tournement which will be on Friday September the 14th with a 9:00 start. Please save the date. We will be sending out invitations and providing more details on the site as we get closer to September.

Finally, many of you have asked about contributions for Cameron's benefit. An account has been set up at our church and I have the information below. Thank you all for your continued support and prayers. Love the Motts.

Make checks payable to Jamestown United Methodist Church or JUMC
P.O. Box 339
Jamestown, NC 27282
Attention: Darlene Davenport
In Memo section identify: Caring for Cameron

Update on Cam's

2007-05-22T12:59:00.000-04:00

Hey everone, Just wanted to let you all know that things are starting to sink in for us and I believe that Casey and I have acceptance of what will happen in a matter of weeks. We still have questions that are popping up and continue to be in contact with Hopkins and they have been very helpful.

The week after we found out about the surgery I got Cameron's hair cut in a very short bob. It is really, really cute and I am glad that we did this. The doctor will only shave the incision site which resembles a question mark. Because of the way we part her hair and b/c I have heard that Dr. Jallo has great scars I hope that her sites will not be very noticeable.

Cameron continues to have 4-8 seizures a day but has a very bright disposition. She really does not have an awareness about her seizures which I also believe to be a huge blessing. We have been injury free and I hope to keep it that way. School is going well and I hope to know soon what enviornment she will be in next year.

We have a wonderful group of friends here that are planning a golf tournement fundraiser for Cameron's benefit and as soon as I know a date I will let everyone know. It will be sometime in September. It will be called "Caring for Cameron" and has been such a wonderful gesture from our dear friends. Many of you have asked about making contributions and I will post the information soon. Our church will be taking care of this for us which is also a wonderful blessing. God is good and we have truly put our trust in him so that the worry and fear do not overwhelm us. Thank you all for your prayers and we will keep you posted. Take care. Shelly

Surgery June14th

2007-05-10T21:09:00.000-04:00

Wow it has been a long time since I have posted. The past month has been very busy and as you can tell from the title we have news. We received a call from Hopkins on Tuesday and they are ready to proceed with Cameron's Hemi. Dr. Andermann from Canada felt like Cameron did not have bilateral Rasmussen's and that althought there is activity on the left side she would benefit from the Hemispherectomy. So..................I think Casey and I were both in shock to say the least. This however is the only news that we really wanted to hear. The other option would have been devastating.

Cameron has really had a struggle over the past month or two. Her seizure activity was getting more intense and more frequent even with the addition of a new medication. We are averaging about 6-8 per day, in addition to lots of focal seizure which are very disruptive to Cameron in a learning enviornment. The medication that we recently added was our last medication to try. We were having to think about recycling medications that we already know don't work or that only worked for a very short time. This was a scary thought as well.

We are now in the planning process and trying to understand the details of the surgery and rehab. The entire process will keep Cameron up there for atleast one month if all goes well which I believe it will. I know that this is in God's hands and that these doctors did not make this decision lightly. Nevertheless, it is scary. Cameron is a survivior and I know that to have a more coherent little girl will be an incredible thing. I can only imagine.

Cameron had what we hope to be here last IVIG treatment today. Everything went very well once they got her IV started and a good friend Stephanie brought some lunch and company for several hours which made the day fly by. We are truly grateful for the support and love of so many and we know that your concern for Cameron is on your minds. We will post again as more details arise. Love you all. Shelly, Casey, Cameron and Caroline.

update for Cameron (finally :-) )

2007-04-06T14:11:00.001-04:00

Hello all!!

Happy Easter!!! Since our last update Cameron's condition has worsened some. We have not heard back from Hopkins on their recommendation and it has now gone on too long so we will follow up every week now until we get somewhere. Basically all the meds, etc. that we are doing now seem not to be working very well as Cameron is having more seizures daily now than at the beginning of this year. Plus when Shelly was at the beach last weekend Cameron busted her head open requiring 7-8 stitches after falling from a drop seizure and hitting her head on a table. We are now keeping a closer eye on her than normal as the wound heals and the risk of another fall is greater now than in the past 6 months. She is still a super-sweetheart of course and it breaks our hearts to see her go through all of this. Through it all though Cameron is very strong--for example in getting blood work done yesterday she did not even cry--tough girl!!!!! Despite all of this our faith is still very strong in God that He has a plan for our dear Cameron later in life. Things will get better for her eventually and we are so fortunate in so many ways. Caroline is an awesome little sister and loves to take care of her big sis whe she is having a seizure and in general copies Cameron in most activities. Treasure the years with these younguns as I hear they grow up pretty fast. Shelly & I are doing good and we truly thank all of you for your thoughts and prayers. Have a great Spring--hopefully the weather warms back up soon............

take care, Casey

Hopkins visit last week

2007-02-13T06:45:00.000-05:00

We are home!! Actually got home on Saturday after a week at Johns Hopkins with Cameron being hooked to the wall by EEG leads since Tuesday. We left the hospital Friday and came home from NOVA on Saturday. Overall our stay at Hopkins was good and we found out a lot of unanswered questions. Our doctor there is great--thanks Dr. Vining!!--and they were all really impressed with Cameron's improvement in her cognitive and motor skills since our last visit there in September 2006. Her seizures are about the same as when they reviewed them in September so that is the main concern now. She still has seizures daily and this is not good to continue on with forever. At this point we have no decision or answers from Hopkins but after we get another MRI here at Baptist on 2/20 Dr. Vining is sending Cameron's test results to an expert doctor in Montreal--she called him a "guru" in this field. Then once he reviews his opinion comes to them and then they review and give us feedback and information. So we are looking at probably 6 weeks before we here anything definitive about the surgery or not. The good news is we are almost done with the tests and the fact that they think Cameron has mad dramatic improvement. So hopefully we can maintain that progress and be patient because this is God's plan for us. We are in the best hands possible and that is all we can ask for at this point. Thanks again for all of your prayers---they work for us everyday.

take care, Casey, Shellly, Cameron & Caroline

back in the good 'ol south :-)

2007-01-26T07:41:00.000-05:00

We got back from Baltimore and NOVA on Wednesday. Overall we had a good but exhausting trip. Sunday night we stayed with the Miller family outside of Baltimore and met their sweet 16 year old daughter Jody. We enjoyed our visit with them and Jody & Cameron had fun with all of Cameron's demands to play. Jody has done well since the surgery she had at almost 4 and is a junior in high school in the middle of exams. We watched her dance video and she has way better skills than either Shelly or I. Monday was full of evaluations of Cameron's speech & physical skills at the Kennedy Krieger center. This is were Cameron will have therapy if we have surgery and we were highly impressed with everything there especially the people. Tuesday morning was more of the same there testing motor skills in the occupational therapy part. Cameron had a couple of spurts of difficulty in all of that but overall she did great and of course everyone loved her sweetness. For lunch time Tuesday we went to have some fun at a place call Port Discovery--a 3 story Children's Museum with a climbing tower in the middle going all the way to the top. Cameron had a great time and we can't wait to take Caroline next time we are there. Then back to the hospital to meet with the doctors. After the looooooooooooooong wait we finally got in the meet the surgeon (Dr. Jallo) which was very brief and then we were back in the lobby waiting again. It was good to meet him and he seemed like a nice man but we were disappointed with what seemed like a waste of time. Finally we did get in to see Dr. Vining and they were highly impressed with Cameron's improvement in skills since the last time we saw them. We all agreed to about a 50-60% improvement in her overall condition so that was good. Basically at this point surgery is on hold until we do another EEG monitoring visit. We will probably go back up to Hopkins in February to do this and that is a 2-3 hospital stay. We plan on taking Caroline with us to Baltimore this time and hopefully stay at the Children's Center--a $20 a night place for families right accross the streat from the hospital. Surgery is still a high probability but we will know for sure in a month or so. Another option of treatment is a chemo drug called Citoxin--we will look into this as well. Thanks for all of your prayers--they are working as Cameron is definitely back with her bubbly personality that we had lost back in the summer. God provides us with miracles if we keep the faith.

take care,

Casey, Shelly, Cameron & Caroline

Heading north.........

2007-01-19T20:41:00.000-05:00

Hello all!!

We are leaving for NOVA tomorrow to stay at Shelly's parent's house. Sunday night we will stay with a very nice family whose 16 year old daughter had the surgery we are considering when she was 3. Our appointments at Johns Hopkins are Monday & Tuesday--on Tuesday we will have time to go to the aquarium and do other fun stuff at the Bay in Baltimore. These appointments should give us the information needed for the decision to have surgery now or not and when that would be scheduled. We will be back in the Triad late Wednesday so pretty quick trip this time. Thanks for all your prayers and concern for Cameron--she is a super sweetheart and we hope to get some conclusion for her future with this trip.

take care, Casey

2007-01-05T14:29:00.000-05:00

Hello, Casey posted some family photos from our holiday beach trip. As you can see Cameron was very active and had a great time. Kitty left behind some candy canes for us to enjoy and Caroline found them and unwrapped the one she is enjoying right away.

Cameron is now going to speech thearpy four days a week and ot once a week thanks to Cap C. She is really doing very well and meeting goals at most appointments. Cameron's seizures have returned as we knew they would so it has been a tough week for her. Yesterday required three uses of diastat which is a strong medication to supress or stop the seizures. Today has been a much better day and she has been seizure free. We are officially in countdown mode for Hopkins. We will keep you posted. Much love, The Motts.

Vacation

2007-01-04T17:20:00.000-05:00

Holidays

2007-01-01T09:09:00.000-05:00

Hello, hope that everyone had a great time this holiday season. We actually went to the beach thanks to the Simmons family and their beautiful home. It was a perfect time as Cameron was really seizure free and she was able to run and play helmet free on the beach. My parents, sister and niece joined us as well and the time flew by quickly. As you know I did not get out X-mas cards so I am going for the new years card instead, we shall see.

Our little break from seizures has ended as Cameron had three drop seizures on Saturday and Sunday morning she started off with a more severe but short seizures that consisted of very rapid shaking all over her body and head. Neither of us had witnessed this type before but they are always changing. That first seizure got her on a bit of a pattern and the day was a little rough for her. The same thing has already happened this morning so not sure what the day has instore for her.

The Depakote has been a blessing in many ways for Cameron. Over the past week Cameron started speaking in 5 and 6 word sentences and then it moved up to 10, 12 and even more on some occasions. This is great because Cameron normally was talking in 2 to 3 word phrases and they were often not clear. This made the doctors think that her speech had been destroyed or that she could have this rare form of Rasmussen's on both sides of her brain. The important thing is that she does have her speech and her congnitive awareness has also improved. This tells me that her previous medications were really putting her in a fog. I am very excited to get back to Hopkins to see what the doctors say now. January 22nd could not get here soon enough. Many thanks to you all for the continued prayers and kind gestures. All our love The Motts.

IVIG

2006-12-16T13:07:00.000-05:00

Cameron completed her 4th round of IVIG on Thursday. We are getting the hang of things but hoping that we will not have to do this for much longer. We got our call from Hopkins this week and Cameron is scheduled for the 22nd and 23rd. She will have a pre-surgery work up with PT, OT and Speech testing and we will meet Dr. Jallo the surgon and meet with Dr. Vining and her team again.

Cameron is having a much better week as far as seizures go but she is dealing with nausea and gastrointestinal upset due to the depacote. It is such a challenge because no matter what you do there is a trade off.

As many of you know Cameron received a wish from Make a Wish and many of the items are arriving which is so much fun. We asked for a thearpy room and she loves the items and toys that have come in so far. We are also getting a special computer that should be here very soon. Other then that all is well. My mom was here and celebrated breakfast with Santa this morning which the girls loved. I am hoping to get out x-mas cards with a picture this week. We are heading to Atlantic beach next Saturday for a relaxing Christmas and I can't wait. Cameron and Caroline can't stop talking about the beach so we will pray for beautiful weather.

Take care. Shelly

Review of last week

2006-12-10T20:22:00.000-05:00

Hello. Just wanted to update everyone on Cameron's week and some news that we have recieved from Hopkins.

Cameron started a new medication this past Sunday called Depakote. It has been a bad week for her due to the fact that this medication interacts with her Lamital (a current medication). Cameron normally has a level of 15 on Lamital and it was up to 52 with the addition of the new med. This caused some major problems for her and she missed most of the week of school. As strange as it is when you have too much medication in your system it acutally can cause seizures which is what happenend with her. She was not walking well or talking and was in pretty bad shape. As soon as we got the information on her high levels we took her off of the Lamital and saw immediate improvements.

We also heard from Hopkins this week and got the news that they want to see Cameron for a pre-surgery work up. They are not satisfied with the level of results from the IVIG and do not feel like we should waste anymore time. We have lots of questions of course, but this is what I always thought things would boil down to. We will know soon when we should be heading up there but hopefully it will be in January.

Cameron has another IVIG treatment on Thursday and I am excited for her to get another boost although I do see the impact of each treatment fading somewhat.

Cameron's CNA care will begin soon and I am excited. The individual will be able to work with Cameron on educational items as well as providing her with care. Our other great news is that Cameron recieved a Make a Wish and is getting all kinds of great theraputic items including a touch screen computer with special programs to help with her development. I will update soon as soon as we know more about our next appointment with Hopkins. Much love and thanks again for the support. Shelly

Appointment at Baptist

2006-11-29T19:38:00.000-05:00

Cameron had an appointment today with Dr. Santos and our wonderful nurse Valerie. She had an adjustment to her Vagus Nerve Stimulator to a "rapid cycle". Previously it would go off for 30 seconds with a 5 minute break. Now it goes off for 7 seconds with a 18 second break. Very different but often this rapid cycle works well in children. We are starting yet another new medication Depacokte soon and I am not as hopeful about this as I am the change to her VNS. This really seems to be the only thing that has made an impact on her seizures.

Cameron is doing well at school and is riding the bus which is working out well for me. It was hard to wake up Caroline everyday to pick Cameron up so I don't feel quite as stressed. We have decided that Cameron will stay at her new school for now mainly b/c of her new teacher and her fantastic PCA (personal care assistant) Renee. Hi, Renee.

Cameron did have a seizure yesterday at school and hit her face and cut her eye. She did not need stiches and now just looks a little strange b/c of a slight black eye and swelling. She is such a trooper and Casey has started to call her brewser. This is the second injury near the eye in the last two weeks so we are going to have to get a hard helmet with a face guard. If I ever thought her current helmet was unattractive I thought wrong. Otherwise all is well and we are continuing to find some good food options for Cameron on her diet. I am getting better at understanding lables and what to look for which makes a difference. Now if I could only find some bread that was not the consistency of bricks she would be good to go. Take care. Shelly

Visit to Baton Rouge

2006-11-23T12:00:00.000-05:00

Hello, We had a visit to Casey's sister and brother-in-law last week and it was wonderful. Casey got to go to an LSU game and Cameron and Caroline got to spend some QT with their four cousins Thomas, Annie, Claire and Daniel. While we were there we went to see a Dr. Stephani Cave. She has put Cameron on a gluten and casien free diet. This is wheat and dairy product free. The diet has it's challenges but we are more then willing to try this. Many children bodies do not breakdown these proteins which get into the bloodstream that eventually end up in the brain as a form of morphine. These morphines interfere with the transmittion of nerve impulses which effect behavior and development. She also has Cameron on alot of supplements to help cleanse her system. Like I said we are willing to try anything but what she talks about makes a lot of sense. She has written a book that links vaccinations to auto-immune disorders as well as autism that I am currently reading and find very fasinating.

As Casey said we got the approval for Cap-C yesterday. This was great news as we were not expecting to hear anything until after Christmas. Cameron will have a CNA everyday from 2:30 to 5:30 to help with her care. This covers just about everything and will be very helpful to me. We have to now choose an agency and interview CNA's to find a good fit. Addtionally, this will allow Cameron to get much needed speech thearpy four days a week. It would also cover cost for equipment that Cameron may need which will also be helpful. We are excited and truly appreciate all of the prays for this matter. Much love and Happy Turkey Day--Shelly

Great news!!

2006-11-23T11:28:00.000-05:00

Yesterday Cameron was officially approved for Cap-C services!!! This is a Medicaid sponsored program that will primarily provide us with Respite Care (official definition--A service that gives someone temporary time away from the continual care of the person they are responsible for. It could be in the form of an adult day care center, occasional in-home nursing care, "trade-off" afternoons with another caregiver or service from a community volunteer)--a much needed break for Shelly. I think the hours are 2-5 daily for them to come to our home during the week but Shelly will post soon with all the details on this and the other things going on now. I am so fortunate to have these blessings of a thoughtful wife & mother and 2 beautiful & super sweet daughters. Thank you God!! Happy Thanksgiving to you all!!!!

take care, Casey

Update on School

2006-11-17T20:45:00.000-05:00

Hello everyone. I know it has been a while so I will be updating on several topics over the next few days. Cameron has moved to Pilot Elementary to the Lifeskills class. They have a full time nurse in this class and Cameron is able to keep her personal care assistant. I was honestly very heartbroken about the move for several reasons but as Casey and I see it this is a trial. If it is not a good fit as much as we would hate to do it we would move her back to Jamestown. Cameron and I went to visit the classroom last week and I had a complete breakdown. I don't do this often but Cameron had a bad seizure in the car and then I had to go into the classroom and tell her story all over again. This is the third time as we had originally started out at Florence Elementary. The teacher, assistant and nurse that we met with were very compassionate and we felt good about giving this a try. This classroom is not as acedemic but the teacher grew up with a twin sister that had seizures as well and feels comfortable with the situation.

I did find out on Cameron's first day that they do not have a speech teacher at this time and we are trying to work through this with the school system. This is Cameron' s greatest need at this time to we will pursue the issue until we have resolution. Cameron is also riding the bus which is a great source of joy for her. She is so proud when she gets home and it makes my life so much easier as I do not have to wake up sweet Caroline everyday to pick up Cam's. Next week Cameron will start to ride the bus to school as well. I am a little nervous about this as she will be at school during a the time of day when her seizures can be more active. Please pray for her saftey next week and pray that her caregivers are prepared to handle her needs. Love you all Shelly.

Update from Shelly

2006-10-25T20:47:00.000-04:00

Hello everyone and thank you all so much for showing interest in Cameron's progress and continuing issues. I truly believe that this last IVIG treatment provided Cameron with some improvements in her speech and use of her left hand which has been wonderful. She does however still continue to have about five seizures a day and they are very unpredictable and vary in type. This has made it hard for Cameron to remain at school for any lengthy period of time but we are working through it daily. Her school, teachers and resourse teachers are fantastic and they want the best for her. She was assigned a personal aide and they are now wanting to upgrade that person to an actual nurse that can determine when Cameron needs immediate medications and when an ambulance would need to be called. When she has a seizure at school there is certain rules they must follow, but with her seizures changing so frequently it is hard for them and for us for that matter to make a decision about when to use the diastat.

Diastat is a rectal sedative that must be given when a seizure does not stop which happens about three times a week. Even after the medication is given the seizure will usually last for another 15 minutes which can be very upsetting in a classroom setting.

We have added a new medication Kepra recently and we are hoping that it will provide some relief for her. She is also scheduled to due her next IVIG on the 16th on November. My mom will come again to help which worked out perfectly last time. Cameron has stared private Speech, OT and PT which is also wonderful. I truly believe that this new place is where we are supposed to be and I have a lot of confidence in all of her thearpist.

Please continue to share this blog with anyone who may ask about Cameron. It has really made life easier for me but I still would be glad to talk anytime and appreciate the genuine concern form everyone. We also thank all of you who continue to pray for Cameron. I know that God is with her and will protect her from harm. I also know that God can provide a miracle for Cameron and we are still hopeful. In the meantime we are doing all we can to help her to have a normal and happy life.

You may see Cameron around sporting her new pink helmet. It has been wonderful and allows us to relax a little more on a daily basis. Casey's Aunt Gay form Denver was here recently and painted beautiful flowers and butterflies on it-which Cameron loves. Thanks Gay. Take care all. Shelly

Update

2006-10-13T09:28:00.000-04:00

The visit to Baptist yesterday went well without incident with either the MRI or the IvIG treatment. The IvIG infusion was more than she had in our first round of this therapy and she came home in a noticeably upbeat spirit. She had a great night but this morning had another seizure that was lengthy. She did not have any seizures yesterday so it was not a suprise to have one this morning. Hopefully as we move through the weekend the IvIG will settle in to lessen the seizure activity going forward. Thanks for all the comments and encouraging words!!

Baptist tomorrow

2006-10-11T20:03:00.000-04:00

Cameron is having another MRI at 8am tomorrow to be followed by her 2nd round of IvIG therapy. IvIG is intravenous immunoglobulin and is taking from a combination of many donors of human plasma. This will be the 1st in what will be monthly IvIG treatments--the infusion lasts about 6 hours or so. We are hoping that this can put a stop to her daytime seizures and will allow her to go back to kindergarten next week. Our doctors at Johns Hopkins want to run through this option of therapy before we look furthur into surgery. Also the MRI we are having will show them if any changes have occured since the last one which would be a sign that the Rasmussen's Syndrome has progressed. Please continue to keep her in your prayers to give her relief from the seizures or to move us to a point that surgery is a more viable option. At this point, surgery is the only "cure" for Rasmussen's and IvIG or any other non-surgical therapy possibly just gives her temorary relief. However anything is possible and with God's help miracles do occur. While we were at Johns Hopkins Shelly met Holly Paauwe and her daughter Avery. Avery just had a hemispherectomy (the surgery Cameron might have later) and has had a rough time since the operation. Here is her blog http://thepaauwereport.blogspot.com If you read this you will see how great Holly's faith is in spite of what is going on now. We pray that we can be as strong as her if we ever have to cross that path. Please keep Avery and her family in your prayers so hopefully things will improve for them quickly. We greatly appreciate all the support that you have given us and we feel very blessed to have Cameron & Caroline regardless of what we have to deal with to provide them with the best quality of life in the future. Nobody ever said parenting was easy and man were they not joking :-) We love you all--Casey, Shelly, Cameron & Caroline

Results from Johns Hopkins visit

2006-10-08T14:51:00.000-04:00

We got a call on Wednesday from Johns Hopkins on their recommendations from the meeting they had about Cameron this week. They have decided to delay any brain surgery now but she will start to receive monthly IVIG therapy instead--this is what she had during our last stay at Baptist. She will also have another MRI when we have the 1st therapy scheduled which is pretty soon. Also another non-surgical therapy, a chemo drug called Citoxin used primarily to treat MS, is an alternative that they might explore pretty soon as well. While this is not the final solution to the problems we are having with Cameron's seizures, we feel we are definitely in the best hands possible to lead us to the decision about surgery. They want to give theIVIG a chance to see if there is any noticeable improvement but will be open to reevaluating everything if Cameron's condition does not improve or gets worse. God has led us to this place and we will continue to trust in Him that there are better days ahead for Cameron. Thank you again for thinking of us and we are very grateful for all the prayers and support.

Cameron's Johns Hopkins letter

2006-10-08T14:09:00.000-04:00

Dr. Vining,
I emailed you earlier about my daughter Cameron who was recently diagnosed with Rasmussen's Syndrome in July. She started having seizures when she was 3 and was initially diagnosed with Cortical Dysplasia. She is 5 years old now and turns 6 in December. From contact through a number of different resources we have decided that we need to come to Johns Hopkins to be evaluated to see if Cameron is a candidate for surgery. She has experienced a significant decline in her speech and motor skills that started in December of last year. At this point she really does not communicate and rarely responds to even simple questions that we ask her. Additionally, her left-sided weakness is becoming more profound everyday. This is a dramatic change where as this time last year up to December she could communicate easily with us and really did not have any noticeable decline in her skills. We now feel she is headed down a path to be severely handicapped permanently if something is not done soon. She just got through with her 1st round of IVIG therapy at Wake Forest University Baptist Medical Center where our current neurologist Dr. Cesar Santos is located. On Friday we sent information on Cameron to Johns Hopkins based on what was requested when my wife spoke to Diana Pillas. We are pleading that we can be seen soon. We have been in contact with a number of families that had successful surgeries with Dr. Ben Carson who encouraged us to consider not delaying in looking at surgery for Cameron. Of course we are new to all this and really feel that you and the staff there can help us make the right decision if Cameron's decline is indeed due to Rasmussen's. Please take all of this in consideration to help us get in to see you and the staff there as soon as possible.