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!!!
Friday, June 29, 2007
Thursday, June 28, 2007
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
luv yas, themotts
Wednesday, June 27, 2007
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
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
Tuesday, June 26, 2007
Brief update
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
love, themotts
Sunday, June 24, 2007
Cameron update
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!!
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
Saturday, June 23, 2007
Daddy's home (for now)
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
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
Friday, June 22, 2007
new pictures as promised
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"
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
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 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.
Thursday, June 21, 2007
Cameron to move on Friday
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
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, June 20, 2007
Wednesday evening.
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..............
Tuesday, June 19, 2007
Happy Tuesday--sleep is good!!!!
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
take care, cmott
Monday, June 18, 2007
Monday afternoon
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
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
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. 
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
Sunday, June 17, 2007
Happy Father's Day!!
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.
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.
Saturday, June 16, 2007
Cameron's Saturday
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.
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?
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.
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.
Friday, June 15, 2007
Post surgery day 1
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
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
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
Peace be with you my friends. Thanks so much for lifting us up. Shelly
Thursday, June 14, 2007
What a day! Cameron is such a strong little one....
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)
All our love,
the motts (Cameron, Caroline, Shelly & Casey and Dillon & Amber back home)
Monday, June 04, 2007
Counting Down
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.
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.
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