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

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

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.

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.

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

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.

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

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.

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

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

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

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

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 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

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

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!!!!!!!!

Sunday morning

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!!!

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!!

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!!

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