Powerful Man

It's a bird! It's a plane! No, it's Powerful Man! That's what David wants to be called. Our last visit to Nashville was short and sweet. No surgeries! We met with Dr. Phibbs and Dr. Neimat and got the thumbs up (as David would describe) on his healing and recovery. Then Dr. Phibbs, using a remote control type of devise, turned David's battery on. They usually look for sparkling lights or tingling in the legs to let them know when they've reached the best setting, but since David had his thumb up and a big grin on his face almost the whole time, it was hard to get a straight answer from him. Therefore, Dr. Phibbs put him on a very low setting to start with. She said that we probably won't notice any difference with this first setting since it is so low. From here on out Dr. Ledoux, David's neuro in Memphis, will change the settings every couple of months. We will only go back to Nashville for annual check-ups unless there is a problem. For this first setting, we won't be doing any fine tuning at home with the remote that we have. We will only be checking to make sure it is on. At the next appointment with Dr. Ledoux, we will be shown how to do minor adjustments.

A Lesson In Patience

Our friends in the DBS for Dystonia group tell use the key word here is PATIENCE. And the second key word is PATIENCE. For most, this is a gradual process and certainly not a quick fix in any shape or form. As you think of them, please keep these wonderful people with Dystonia in your prayers. If you go to youtube and look up dystonia, you will find some heart-wrenching videos of people who suffer much more than David. We met some at the Dystonia Symposium in April. But I feel like I know many of them personally as we have corresponded through the group.

In Summary

We are very thankful that David hasn't been sick at all throughout this whole process!! That's pretty amazing since he has been around family members with occasional colds. I think it has been threefold: LOTS of sleep (10 - 12 hours a night!), isolation from the public for the most part, a very small amount of vitamins. But above all, the Great Physician has been taking care of David. We are truly grateful for our church who has been there for us in many ways. We are also thankful and appreciative to all the friends and family who have prayed for us and inquired regularly about David.

Moving Forward

On Monday, David starts back with half days at school. He is looking forward to seeing his friends! Then, in January he will go back full time. I am not looking forward to getting him up at 5:00 a.m.! Schools starting at 7 should be outlawed! On Monday I will also look into starting David with a physical therapist 3 times a week.
Once again, thank you for following David's journey with us! I will continue updating every once in a while. We hope you have a wonderful holiday season!

"For unto you is born this day in the city of David a Saviour, which is Christ the Lord."
Luke 2:11

Relief and Fairies!

Well, it's high time I gave an update on the 'ole boy! David is doing much better since the last post. I didn't give him any pain meds yesterday. He is complaining about pain much less and farther apart. I finally got the nerve to remove the bandage on his chest this morning. The wound looks good and clean. Everything seems to be healing nicely!

I hope you enjoy these pictures of David preparing for his 3rd surgery! I finally remembered to get the camera out when Dr. Neimat came in. We are very thankful for such a great and personable doctor! Dr. Neimat makes us feel very at ease and confident. David seems to relax when he walks in the room.

Cleaning Fairies!

I didn't know there was such a thing as cleaning fairies until Monday night! They really do exist! As I started putting things up when we got home Monday, I kept noticing unusual things, like folded up blankets in the den, vacuum marks on the carpet (a very unusual site in our house!), a clean kitchen floor! But the biggest shock and give-away was my bathroom! I just about fell over when I walked in and saw it! That's when it really hit me that fairies do exist! OK. I know they weren't real fairies but some wonderful, caring friends. How blessed we are! (and VERY embarrassed!) Thank you, Lord for such friends!

Happy Thanksgiving!

Well, in case this is the last post before Thanksgiving, we hope you have a very wonderful Thanksgiving! Let us give thanks not only to those we love and appreciate, but especially to the One who made us and loved us and sent His Son for us.

"All good gifts around us are sent from heaven above,
Then thank the Lord, O thank the Lord for His love, for all His love!"

(from All Good Gifts by M. Ryan Taylor)

In His Grace and Joy,
Dayna

Not a Happy Camper!

Hello friends,

We have been home now since Monday night. Everything went well with the surgery and I finally got some pictures with Dr. Neimat. But I will say that as of this morning (Wed. around 9:30), David has been in a lot of pain. He keeps pointing to his underarm and yelling. I'm not sure yet if this is something I should call the dr. about. Please keep him in your prayers. I will update again soon and put up pictures.
Thank you!
Dayna

Happiness Is...

A Special Card!

David has been delighted lately receiving many cards from friends! He grins from ear to ear! Thank you so much! I think it has really helped him feel like he is not forgotten by his friends.

Venturing Outside These 4 Walls!

Last night I took David to the Special Dance for a little while at the Pickering Center. He stayed home from the Masquerade Dance last month since Grandad and Aunt Wanda were here and it was too close to the string of surgeries. But now that we are nearing the end we thought it would be ok to get out in public for a little while. So many of his friends from school came up to him to see how he was doing! They had been very concerned. I think it was good for them to see that David is fine. Next week we plan to take him back to church. We are also planning one of his favorite past times - a movie! Anyone who has been around David for any length of time has probably been shown his list of movies he wants to see. He has written the list out on his AlphaSmart keyboard. It says that he needs to go "every Sat. at 12 noon". That's wishful thinking for Dave. We make it about once every 4 - 6 weeks.

Dear Friends

Thank you to many who helped out with meals while we were out of town for the Big One. Special thanks to my Care Group at church. Thank you for the phone calls and emails asking about David. Thank you for stopping me at church to ask about David and to get a little explanation of his surgery. Thank for the Blockbuster gift card. Thank you to my sweet friend who got my pansies in the ground that I bought from John's concert choir almost 2 months ago!

Coming To The End Of Surgery!

We leave once again for Nashville Sunday afternoon for David's 3rd and final surgery. His appointment is at 8:00 Monday morning. This one is an outpatient surgery so we should be back Monday night. They will put the battery in his chest at this time. I heard from friends on the Dystonia board that, for some, this one is the most painful. So far, David has done great! He hasn't tried to touch and pick at his staples or incision much at all. And he hasn't had much pain. (Thank you God!) So we would appreciate your prayers for:

1. Safety to and from Nashville.

2. The least amount of pain and discomfort.

3. Safety during anesthesia.

4. That we would be a light and witness for Christ.

5. John and Aaron as they hold the fort again. (John- no unforeseen"sickness" that would keep him from school, getting to bed at a reasonable hour, you know, that sort of stuff)

Once again, thank you for following David's journey of DBS with us! We appreciate you !

In His Grace and Joy,
Dayna

Finally Home!

It is now Sunday and I am finally getting a chance to update you . As many of you already know, we didn't go home on Thursday but stayed another night after all. David was having a hard time staying awake and being alert. I'm sure that was due, in part, to the strong pain meds they had him on. Here are some pictures of David all ready to go home. He had many wonderful nurses. I only thought to take a picture of the last one, Joey, while we were waiting to be released on Friday. Then signing the release form. Next week I'm going to try hard to remember to take a picture of Dr. Neimat. He really puts us at ease and seems to be a great doctor.

Are You The Brain Surgeon?

Speaking of Dr. Neimat, I wanted to tell you about a funny thing that happened. Not long ago we told David about the funny clip from Monty Python in the 70's (?) about the man who walks into the surgeon's office and asks if he is the brain surgeon. The surgeon says, "No! No! I'm not the brain surgeon!" Then after thinking about it for a minute he says, "Yes! Yes! I Am the brain surgeon!" David thought that was so funny. So when Dr. Neimat walked in to talk to us as they were prepping David for surgery, David pointed to his head, grinned, and said in his slow speech, "Are you the brain surgeon?" We all laughed!

We arrived home around 5:00 on Friday evening. David has gradually been getting back to his old self, watching his shows, playing computer games, and his gameboy. His appetite is also slowly coming back.

Our next trip to Nashville for Stage 3 will be on Mon. the 16th. We will be leaving next Sunday afternoon.

Thank you so much for all your prayers. It means so much knowing that there are a lot of people out there thinking about David and praying for him.
Until next Sunday!
In His Grace,
Dayna

Sleeping Beauty at Vanderbilt!

Well, it's high time to give an update! The surgery went very well! In fact, it didn't last quite as long as anticipated. It took 3 1/2 - 4 hours instead of 4 - 6. This was probably because David was asleep. Thank you so much for praying about the specific things during surgery! I talked to a few people after we talked to the anesthesiologist who gave us a scare. I guess by law they have to tell us certain things about what could happen. He said that because of some of the medicine David has been on for the Dystonia, he could have a serious reaction to the anesthetics. He said he would know in the first 10 min. Everything went well though because we didn't hear any more from him and Dr. Neimat said David did fine with the anesthetics. Dr. Neimat was very pleased with the CT scan and said the leads look like they are placed in the very spot needed in his brain.
Recovery Room and Beyond


We were able to go into the recovery room around 6:30. David was pretty unhappy until the nurse was able to give him some pain meds after the CT scan. After that he was a happy camper and even asked for a hamburger in between dosing off. What usually is about a 2 hour stay in recovery turned out to be about 7 or 8 hours of waiting for a room to become available! The night shift (Dad) took over around 11 when we realized how long it was going to be. I (Mom) went back to the hotel to get some sleep.


I relieved Marshall around 8 this morning . David has been in and out of sleep and hasn't complained of pain since 5:30 this morning (at which time the nurse gave him meds for pain). Dr. Neimat came in right after I arrived and said everything looked really good and David was responding well. At noon they will come back and let us know whether or not David can go home today.

Once again, thank you for following along with us! We really appreciate your prayers. I rest in the fact that we have a loving and all powerful God!

Dayna

The Big One!

It is Tuesday morning , Nov. 3rd. We will be aiming to leave around 3:00 this afternoon to go back to Nashville for Stage 2 , the lead implantation. The actual surgery is 2:00 tomorrow.

As with many major decisions, once we make the decision we have peace. But over time as the event gets closer, we start to doubt. I think, for me, the more informed I become with all the positive results, I also hear the negatives and then I start to overthink. But we really do believe the Lord has brought us to this decision for David.

Home-bound

As you may know, we've kept David completely home-bound that last few weeks. For the most part, he has done well and he hasn't caught the bugs going around. But he does miss his friends. He missed the special Masquerade Dance last Friday and was rather sad about it. I've also kept him home from his once a week Special Olympics Bowling on Mondays. Yesterday he wanted to go because it was his friend Katherine's birthday. I'm leading up to something here. David would probably love a phone call or 2 over the weekend, and I know he would love a card. Although he doesn't communicate much or well, he is fully aware.

Prayer Requests

Certainly a major praise is that David has not been sick. Also, things have been pretty calm around here. Once again, I am so thankful that Aaron is living at home right now. Although, at 17, John is quite capable of holding the fort, getting himself up and to school, and getting to bed at a reasonable time. Right? Hmmm.

Here is how we would appreciate your prayers :

1. Please pray that the doctors would place the leads in the exact right spot in David's brain. Most of the time the patient is awake and can do simple commands like "lift you right leg" to help the doctors know they've hit the right spot. But they felt like it would be better for David to be asleep and they are confident they can do it right.

2. Please pray that no infection would set in and that he wouldn't catch anything from being in the hospital.

3. Traveling safety.

4. John and Aaron.

5. Harmony and good communication for Marshall, David and me.

6. The the Lord would be honored in our lives and we would be a light for Him.

Thank you so much for joining us in this journey! We appreciate you!

Dayna

Stage 1 over!

Here are a couple of blurry pictures of the happy boy the day after Stage 1 of David's DBS surgery for his Dystonia! Everything went well! After arriving at 6 a.m. and getting all checked in, they took him back around 7:30. He was gone for about 2 hours. During that time they implanted the four screws into his skull, then connected each small incision with small staples. While he was still "under", they did an MRI and CT scan. Meanwhile, Marshall and I went back to our hotel for breakfast. As soon as we got back to the hospital, the buzzer they had given us rang. We went back to the recovery room to find a VERY groggy David. It took about 45 min. for him to come out of it. The only real problem was that he complained of his head hurting. But the pain medication they gave him in his IV took care of it quickly. We were able to get on the road back to Memphis shortly after he could sit up. He was wide awake on the way home playing his gameboy for about 2 hours. Then after a big cheeseburger at Cracker Barrel ( he hadn't eaten since the night before), he slept the rest of the way home.
Once again, thank you so much for praying!
Until next week!
Dayna

Stage 1 on Tues.!

Well, the journey with DBS truly begins! We will leave Memphis tomorrow (Mon.) in the afternoon and head to Vanderbilt.
We hope to get to Nashville early enough to do a run through from the hotel to the hospital to make sure we can get there without any glitches Tues. morning since we have to be there soooo early (6:00!). Then we'll get an early dinner so David can get in bed early to have plenty of sleep.
Thankfully he hasn't caught any of the bugs that have been going around! We appreciate all those who have asked about David's surgery. It really means a lot to us knowing there are so many praying and thinking about us.

Aaron's few months at home couldn't have come at a better time! He will be around to help hold down the fort with John and get him to school while we're gone. Over the summer when Hannah was home from school, she was able to help out too, while we went to Nashville for appointments. We see God's hand even in details like that! (It's great having a big family!)

We would appreciate your prayers :

1. that David would fully cooperate so the doctors can place the screws in the exact place.
2. that the doctors would be able to put the screws in the right place.(is that redundant?)
   
3. that David would stay healthy.
4. for traveling safety.
5. that we would be a light to all we come in contact with.
6. that things would run well at home while we're gone.

I'll write again soon!
Thank you so much!
Dayna

Pre - Op and The Doctors

Hello friends!
Pre-op went well yesterday, although they did have to stick David 3 times to get enough blood! He was a real trooper! My main concern right now is that he will stay healthy and well over the next several weeks so we won't have to reschedule the surgeries. I'm even considering keeping him out of school so he won't be around as much sickness. Here is a reminder of the surgery dates:

Oct. 27th - Stage 1 - outpatient for screws
Nov. 4th - Stage 2 - main surgery for implanting the leads in his brain.
Nov. 16th-Stage 3 - battery implanted in his chest.

THE DOCTOR'S

On another note, a dystonia patient has been on The Doctor's TV show recently. You can see a recording of it here:

http://www.thedoctorstv.com/

Stay tuned! The next time I write I'll probably include a buzz hair cut picture!!
Thank you for keeping up with David and for so many who ask about him and are praying for him!
God bless you!

A Glimpse Into the Past

Here is a little glimpse into David's past. Sometimes it's hard to remember that David could walk just a few years ago. I've tried over and over to get the text to line up with the pictures but I can't figure it out. So I'm just going to say that these are pictures mostly starting from middle school. They are pictures of David at Special Olympics events, dancing at Camp Smile with his friend Sarah, swimming without a life-jacket, being the king at his birthday, standing with Hannah, at Clearwater Beach with Grandma, riding a horse at his cousin's house, and at Hannah's high school graduation reception in 2006.

Waiting it out.

Hello friends,

We are just waiting it out until Oct. 13 when David begins this whole process with the pre-op appointment. In the meantime, he has received some very sweet cards, seen movies on brain surgery, watching intently, and remained his sweet, content, and ornery self.

Here is a great article I just ran across that gives some good insight into Dystonia and the surgery.
Please read it and pass it on to others so Dystonia can become a household word and a cure will be that much closer!

Click for the Dystonia and DBS article.

Thank you so much!
Dayna

A Beautiful Video

Hello friends!

I just received this link to a wonderful video that will let you peek into the window of Dystonia.
Please watch it and share it with others. The more we share things like this, the more people will know about and understand Dystonia. The more people understand, the more they will do everything they can to help find a cure.
Enjoy!

http://www.youtube.com/user/cemiwire

Dayna

Insurance Approved!

Great news! I just heard from the scheduling lady at Vanderbilt that the insurance company has approved David's surgery! The approval happened in a pretty timely manner! From what I've heard from the Dystonia Group, it could have taken a lot longer! Thank you to all who have asked about this and who have been praying! We really appreciate it. Although we have talked to David about the surgery, I'm sure he does not fully understand what all will go on. According to the times they emailed to us, it does look like we will need to spend more nights than expected in Nashville since some of his appointments are early in the morning. Thankfully Aaron is living at home for a little while and will help John hold down the fort while we are gone. So please rejoice with us as we are seeing the Lord work these details out for this important event in David's life!
Dayna

Hello Friends,
We have some tentative dates now for David's DBS surgery. If the insurance goes through, here is the schedule:

1. Around Oct. 13 - Pre-Op- This appointment will be to draw blood and test him to make sure he is in top shape for sugery.
2. Oct 27th - Stage One - They will measure his head for the "star" that will be made to fit David's head exactly. Then they will put 4 tiny screws in his head. This is an outpatient procedure.
   
3. Nov. 4th - Stage Two - The actually surgery to implant the leads into his brain. He will stay over night or possibly 2 nights.
4. Nov. 16 - Stage three - This is when they will implant the battery pack in his chest.

A month later we will return to Vanderbilt for the dr. to "turn David on". This will be his first setting and he will truly be able to say that he is "battery operated"!

Thank you all for your prayers and thoughts! So many of you have asked about David and his surgery. It means so much to us. Please be in prayer that the insurance will go through in a timely way without any glitches.
Thanks again!
Dayna and family

David's Dystonia In Action

Back from Nashville!

Hello friends!

We just returned from Vanderbilt where we met with Dr. Neumat, the surgeon, and Dr. Phibbs, the neurologist. They took their time with us and answered all our questions. They said that there were about 10 different doctors and specialists in the meeting when they reviewed David's case and all felt that the surgery could benefit him. We're feeling more comfortable and confident that this is the way to go for David. After signing several forms, we got the scheduling process started. We should hear from the scheduler on Mon. or Tues. If we don't run into any snags with the insurance, David will probably start the surgery process in Sept. or Oct. He seems ok with it. We've talked to him several times about it and even went to some youtube videos with him. Thanks for following the process with us! We covet your prayers!
Dayna

Who is David Camp?

David Camp is a 19 year old child of God and a cool dude. He was born developmentally delayed on April 8th, 1990. His parents didn't realize his delay until he was almost 3 years old because he was just a really laid back kind of guy and his sibblings did everything for him and doted on him.
Somewhere around age 10 his teacher and parents started noticing that he was getting kind of wobbly when he walked, swaying back and forth down the hall. This progressed. In middle school they noticed him holding his arm up tight to his chest and turning his right foot in. Some wondered if maybe he had Cerebral Palsey all this time and it was somehow undiagnosed. The more his parents learned about CP , the more they felt like it couldn't be, since he was getting worse, there was no apparent brain damage on MRIs, and it wasn't detected when he was younger. By the time David entered high school he had to be physically guided by the elbow, arm or belt so he wouldn't fall. By the next year the teacher's were using the school wheelchair to take him longer distances in the large school. Still, all this time, no one knew what was going on. He began to get more twisted and tense in his movement and to do anything with his hands was a huge effort. Somewhere around this time, when helping him walk was becoming a huge task, a highly recommended movement specialist entered the scene. It was this doctor and his partners who diagnosed David with "Dystonia". Dys - what? Never heard of it! According to Wikipedia,

Dystonia is a neurological movement disorder in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures.^[1] The disorder may be inherited or caused by other factors such as birth-related or other physical trauma, infection, poisoning (e.g. lead poisoning) or reaction to drugs, particularly neuroleptics.^[1]

By the time David turned 17 he was in a wheelchair all day. An assortment of medicines have helped him with his spasms, twisting, and pain. An AlphaSmart writer, gifted to him by dear church friends, has helped him communicate (he's a great speller!) as his speech has become more affected. Throughout all these changes he has remained his happy, smiling self! About a year ago his movement specialist suggested to his parents that they consider Deep Brain Stimulation in the future. Brain Surgery! After much thought, googling, prayers, discussion on the DBS for Dystonia board, and meeting some of these amazing people who did it, they are now at the threshold of DBS for David Camp. This blog has been set up to keep friends and family informed about David's Dystonia and DBS journey. Please bookmark or RSS David's blog and feel free to leave messages and comments to David and his family. They will love it! And most of all, please be in prayer that God will be glorified and that He would do His amazing miracles in David's life.