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
Sunday, October 21, 2007
Wednesday, October 17, 2007
News from trip to Baltimore.
Hey, Just wanted to let everyone know that all went pretty well on our latest trip back to Baltimore. Cameron has had a strange few days with lots of nystagmus (eye movements) and dizzy spells. We do not believe that these are seizures although they do put her in a state where she does not function very well. Typically, they come on and she can sleep them off with a short nap but on Tuesday the day of our appointments, she was like this from 8:15 - 12:15. She did some work on the split treadmill and the folks in the lab were very patient with us as Cameron took two short naps during this time. It was a little frustrating b/c she was not at her best and I was so hoping for them to see how well she is truly doing. Then we were off to see Dr. Jallo the neurosurgeon and she had the same symptoms which was perfect b/c we wanted them to see in person what we were talking about. When it was time to see Dr. Hartman the neurologist she was back to being perky, happy and no nystgmus, of course. Luckily, we had recorded it earlier in the day so that they could see what we had been talking about. We also had an opportunity to see Cameron's MRI which looked great. They really removed almost everything from the right side except for a small area in the frontal lobe and an area of the occipital lobe.
The main discussion was why are these eye movements and dizzy spells occurring. They believe it can be one of three things. First, it could be something just post op caused by the trauma of surgery and it could go away. It could be medication related so we will be doing some blood work and adjustments if necessary. Or it could be that there is some pressure building up in her brain. They want to rule this last option out. SO we are heading back to Hopkins on Wednesday for a Thursday appointment where they will do a Lumbar puncture or a Spinal tap. This will give them a number or pressure level that may answer some questions. We will keep you posted upon our return.
Overall Cameron is doing so well and school is also progressing but not without challenges. It is hard for her educators and therapist at school as this is new to them and Cameron is changing all the time. The group is very dedicated to helping her to be successful and to get the most out of each day which is so important. Thanks to Cameron's Florence team. Take care. Shelly
The main discussion was why are these eye movements and dizzy spells occurring. They believe it can be one of three things. First, it could be something just post op caused by the trauma of surgery and it could go away. It could be medication related so we will be doing some blood work and adjustments if necessary. Or it could be that there is some pressure building up in her brain. They want to rule this last option out. SO we are heading back to Hopkins on Wednesday for a Thursday appointment where they will do a Lumbar puncture or a Spinal tap. This will give them a number or pressure level that may answer some questions. We will keep you posted upon our return.
Overall Cameron is doing so well and school is also progressing but not without challenges. It is hard for her educators and therapist at school as this is new to them and Cameron is changing all the time. The group is very dedicated to helping her to be successful and to get the most out of each day which is so important. Thanks to Cameron's Florence team. Take care. Shelly
Friday, October 12, 2007
Heading to Hopkins
Just wanted to share a success with everyone. Cameron had PT yesterday and it was amazing. Thursday's are usually her swim day's and I went in about mid-way through her session to observe. The therapist had placed four electrodes that send a small electrical stimulation to Cam's muscles, on her quad and lower leg. They had her brace off and no shoes and the girl was walking beautifully. There was barely a limp and almost no hyper extension of her left leg. It is amazing the things they come up with to help her and they are so committed to her success. Thanks, Katherine, Jenny, Carol and Pat. All of these folks that help Cameron each week are amazing.
For Cameron the first year is very important b/c the left side of her brain must learn to make all of these connections that the right side used to make. Hopefully things like this will enable her to have a very mobile life. We are heading to NOVA tomorrow and then to Baltimore on Monday. Cameron will walk on a special treadmill that also reduces her limp on Tuesday morning and then meet with the neurologist and neurosurgeon. We will update everyone on their thoughts as well. Take care. The Motts.
For Cameron the first year is very important b/c the left side of her brain must learn to make all of these connections that the right side used to make. Hopefully things like this will enable her to have a very mobile life. We are heading to NOVA tomorrow and then to Baltimore on Monday. Cameron will walk on a special treadmill that also reduces her limp on Tuesday morning and then meet with the neurologist and neurosurgeon. We will update everyone on their thoughts as well. Take care. The Motts.
Sunday, October 07, 2007
Almost 4 months post op
Hello everyone. There have been so many things going on over the past couple of months that have kept us very busy. Cameron started school as you know and is doing very well. She is surrounded by a great team that is still trying to figure out how to deal with her very specific needs. Cameron spends all day in the regular classroom setting except for a small nap each morning. The teachers and therapist are beginning to come together on ways to modify her work as the pace in kindergarten picks up quickly.
Therapy in High Point also continues with about 10 hours per week and Cameron continues to make progress. She recently learned how to get up from the ground with no assistance at all, I was so impressed. Accomplishments like these really build up her self esteem and are so important.
As Casey mentioned in his last post the golf tournament that our friends had for us and that so many of you played in was a huge success. We had around 130 players and the day was truly perfect in so many ways. We had lots of family and close friends there and it was something that we will never forget. Thank you all. Earlier the same week of the golf tournament Casey's dad, Joe Mott passed away. He was ill but his death was still very hard on Casey and his brothers and sisters as they had just lost "Sophie" there mother in February. It truly was a blessing that PaPa was able to see Cameron's success before his passing.
Cameron had her first post op MRI on Monday October the 1st and I got concerned with the radiologist initial reading but we have been reassured by our Dr's at Hopkins. She has her follow up appointments next week on Tuesday and I am so excited for them to see this happy, funny and hardworking little girl that has come so far.
We also have a link to the documentary that was done on Cam's if anyone is interested in seeing it please e-mail me and I will forward it to you. This was hard to watch but truly shows the miracle that God has performed in her life. That is simply what it is.
Shelly, themotts27@triad.rr.com
Therapy in High Point also continues with about 10 hours per week and Cameron continues to make progress. She recently learned how to get up from the ground with no assistance at all, I was so impressed. Accomplishments like these really build up her self esteem and are so important.
As Casey mentioned in his last post the golf tournament that our friends had for us and that so many of you played in was a huge success. We had around 130 players and the day was truly perfect in so many ways. We had lots of family and close friends there and it was something that we will never forget. Thank you all. Earlier the same week of the golf tournament Casey's dad, Joe Mott passed away. He was ill but his death was still very hard on Casey and his brothers and sisters as they had just lost "Sophie" there mother in February. It truly was a blessing that PaPa was able to see Cameron's success before his passing.
Cameron had her first post op MRI on Monday October the 1st and I got concerned with the radiologist initial reading but we have been reassured by our Dr's at Hopkins. She has her follow up appointments next week on Tuesday and I am so excited for them to see this happy, funny and hardworking little girl that has come so far.
We also have a link to the documentary that was done on Cam's if anyone is interested in seeing it please e-mail me and I will forward it to you. This was hard to watch but truly shows the miracle that God has performed in her life. That is simply what it is.
Shelly, themotts27@triad.rr.com
Sunday, September 16, 2007
Caring for Cameron Golf Tournament
Hello dear friends!!!
It has been a while since our last post which I guess is good news. Not much to report but continued improvements with Cameron and still no seizures since the early ones after the surgery. She is a true sweetheart and has a very bright future ahead.
The golf tournament Friday for Cameron was a huge success both in the turnout and the delay in the substantial rain that we needed badly. We owe a tremendous thanks to all of our friends who put this together for us as well as all the other volunteers and those who decided to participate. It humbles us to see how many people care for us and Cameron's progress. God's grace has definitely touched many hearts. My hope is that this has better prepared us to take initiative to help as others will also struggle with tough times, grief and sorrow. You all have been an awesome example for us. Thank you!!
Below are some pictures from the PBR bull riding event in Greensboro last night--that's right bull riding--ride 'em cowboys!! Cameron was selected by the Believe in Tomorrow Children's Foundation for a backstage visit with the cowboys and bulls. It was a really neat experience and we all had a great time. Go see it next time they come to your town--great patriotic family night with non-stop action and entertainment. The girls had a ball.........
love, the motts
It has been a while since our last post which I guess is good news. Not much to report but continued improvements with Cameron and still no seizures since the early ones after the surgery. She is a true sweetheart and has a very bright future ahead.
The golf tournament Friday for Cameron was a huge success both in the turnout and the delay in the substantial rain that we needed badly. We owe a tremendous thanks to all of our friends who put this together for us as well as all the other volunteers and those who decided to participate. It humbles us to see how many people care for us and Cameron's progress. God's grace has definitely touched many hearts. My hope is that this has better prepared us to take initiative to help as others will also struggle with tough times, grief and sorrow. You all have been an awesome example for us. Thank you!!
Below are some pictures from the PBR bull riding event in Greensboro last night--that's right bull riding--ride 'em cowboys!! Cameron was selected by the Believe in Tomorrow Children's Foundation for a backstage visit with the cowboys and bulls. It was a really neat experience and we all had a great time. Go see it next time they come to your town--great patriotic family night with non-stop action and entertainment. The girls had a ball.........
love, the motts
Thursday, August 30, 2007
Amazing Cameron
Cameron has had two great days at school and woke up this moring and the first words out of her mouth "I don't want to bring my lunch". She wants to buy school lunch but I have been packing a lunch for her. She was singing the days of the week song this morning and really looks forward to school. Cameron is participating in most activities even regular PE which shocked me and she is coping well. We are very lucky for Cameron to be with her same teacher from last year to provide comfort and support and a good understanding of Cameron. Additionally, Cameron has a regular ed teacher whom Casey says reminds him of my mom. I guess that is why I felt so drawn to her and I truly believe that this is a wonderful fit. I was going to say perfect fit but I am learning that nothing is ever really perfect but it sure can get pretty close. I love the school Florence El. and it just felt so "comfortable" to me and Cameron.
After Cameron's first day of school ending at 2:30 she had therapy from 3-6. I thought she would tire and not be able to complete her sessions but she did amazingly well. She was hamming it up for Toby and Daniel the folks from the UK that are finishing up the filming for a documentary on the plasticity of the brain. The film should be done within the next month and we will get a copy to share with friends and family as it will most likely just air in the UK.
Thanks again for all of your support and love. It is our pleasure to share Cameron's journey with everyone as she truly is an amazing little girl. Take care. Shelly
After Cameron's first day of school ending at 2:30 she had therapy from 3-6. I thought she would tire and not be able to complete her sessions but she did amazingly well. She was hamming it up for Toby and Daniel the folks from the UK that are finishing up the filming for a documentary on the plasticity of the brain. The film should be done within the next month and we will get a copy to share with friends and family as it will most likely just air in the UK.
Thanks again for all of your support and love. It is our pleasure to share Cameron's journey with everyone as she truly is an amazing little girl. Take care. Shelly
Tuesday, August 28, 2007
Back to school!!!!!!!!!!!!!
Very hectic morning and day (especially for Shelly) but Cameron started back to school today. Praise God for all the progress and blessing we have received to this point since Cameron's surgery!!! Here is a picture from before school this morning--notice the camera next to her on the right--our film crew came back for the 1st day festivities. Shelly will follow up with more details later.
Tuesday, August 14, 2007
Two more weeks of summer
Hello everyone. Just wanted everyone to know that Cameron is doing very well. I can't explain what it is like to be with her each day and discover with her something wonderful that she can now do. She gets this look of surprise and satisfaction on her face and it is a beautiful thing to watch. Her social skills continue to improve as well. It is very evident with in the way she communicates with Caroline-they are adorable together.
Cameron continues to make gains in her therapies as well. She is swimming each week with Jenny one of her PT's and for the first time in a long time she went under water and did not swallow. This sounds so simple but it is truly amazing. Before Cameron got sick she was a great little swimmer (similar to how Caroline is now for those that have seen her swim). Once the developmental delays started she couldn't seem to grasp the concept of holding her breath even though it was something she really knew how to do. Cameron was also sized for a more permenant AFO (foot brace) that will still give her support but is more flexible, we should have it in a few weeks. Once school starts our days will be very busy but Cameron should be up to it as long as she can cat nap throughout the day. During PT today Katherine her therapist was stretching Cameron while she was laying down and she fell asleep. Cameron also got a special bike this past week based on a recommendation from her therapist. It is wonderful to have this bike and Cameron loves it if we can keep Caroline off of it.
Cameron's golf tournament is now a month away and invitations will go out this week via mail and email. We will also keep you posted here on her blog. Many thanks for checking in and we will continue to update you on our many blessings. Love ya, Shelly.
Cameron continues to make gains in her therapies as well. She is swimming each week with Jenny one of her PT's and for the first time in a long time she went under water and did not swallow. This sounds so simple but it is truly amazing. Before Cameron got sick she was a great little swimmer (similar to how Caroline is now for those that have seen her swim). Once the developmental delays started she couldn't seem to grasp the concept of holding her breath even though it was something she really knew how to do. Cameron was also sized for a more permenant AFO (foot brace) that will still give her support but is more flexible, we should have it in a few weeks. Once school starts our days will be very busy but Cameron should be up to it as long as she can cat nap throughout the day. During PT today Katherine her therapist was stretching Cameron while she was laying down and she fell asleep. Cameron also got a special bike this past week based on a recommendation from her therapist. It is wonderful to have this bike and Cameron loves it if we can keep Caroline off of it.
Cameron's golf tournament is now a month away and invitations will go out this week via mail and email. We will also keep you posted here on her blog. Many thanks for checking in and we will continue to update you on our many blessings. Love ya, Shelly.
Saturday, August 04, 2007
Hello again
Cameron is still doing great and is progressing daily beyond our anticipation before the surgery. She is walking mostly unassisted but does need to wear a molded plastic brace on her lower left leg to keep it stable. Her personality is completely back and she is having fun again at those pretending things kids like to do. Her attention span is also significantly better given that she can watch a whole movie or kid's show without distraction. So far no seizures since right after surgery so that would put us at nearly 6 weeks without one. This has to be the main difference in her abilities now as no sedatives have been in her system since the days after surgery. 
Thanks again to our Homebuilders Sunday School Class from JUMC for all the dinners since we have been home. We will definitely return the favor when others are in need. This awesome community and faith in God have made this experience one to share. Miracles truly still do occur. Praise the Lord!
take care, themotts
Monday, July 23, 2007
Home and loving it.
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.
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.
Thursday, July 19, 2007
Update on Cameron
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
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
Monday, July 16, 2007
Were Home
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.
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.
Wednesday, July 11, 2007
enjoy some pics
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
Tuesday, July 10, 2007
FOUR MORE DAYS
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
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
Sunday, July 08, 2007
Fun day out.
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
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
Friday, July 06, 2007
Happy Friday
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
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
Wednesday, July 04, 2007
Cameron's day out and other pictures--happy 4th!!!
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 split treadmill--Cams in action
love ya,the motts
The 4th of July
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
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 03, 2007
Tuesday July 3rd!
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
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
Monday, July 02, 2007
Happy Monday!!
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!!!!!!!!
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