David Camp's Diary

Giving Thanks

2011-11-23T16:16:00.000-08:00

Graduation and Wedding

2011-10-25T06:57:00.000-07:00

Hello!
Once again, it's been a while since I've updated David's blog. Since the last post, we've had several major events happen.

Graduation!

After nearly 18 years in school, David graduated at the ripe old age of 21! He started in Special Education Pre-School in the Public School system when he was only 3 years old. That was quite a heart-wrenching decision for us since, at the time, we were staunch home schoolers. In fact, when it was first recommended to us we put it on the backburner because we thought, "There's no way we are sending this child to the public school when his older siblings are home schooled." But shortly after the recommendation, a young missionary from our tiny home church brought his fiance to Memphis who "happened" to be a sp. ed. pre-school teacher in the public school in California! She came to our home and spent a little time with David. Then in her sweet and diplomatic way she asked us why we wouldn't let David go to school. She reminded us that God could use those teachers to help him since they were trained to help children like David. That's all we needed to hear. Shortly after that visit I went and observed the classroom. The next week we enrolled him and never looked back. Being the social butterfly that he is, I think for the most part, he enjoyed his years in school and has become quite the scholar.

Here are a few more pictures for your viewing pleasure. David is in line to get his diploma, wearing the biggest grin ever!

David and Mr. Braslow.

David posing with his good friend Margaret who graduated last year.

Hannah's Wedding!

This summer also brought another exciting event! Hannah's wedding! On May 17th Hannah married a wonderful young man, Caleb Beasley. Here are a few pictures from the wedding.

That's all for now. I'll write another update soon! Thank you for following!

David's 21st Birthday!

2011-04-08T18:17:00.000-07:00

Today is a big day! David turns 21 years old today! It's hard to believe! I don't think he has stopped grinning since he got up this morning. This week he did the finger count-down with the bus drivers every day. I think they all got a kick out of how excited he was.

The festivities started yesterday when the bus driver gave him an early present - a T-shirt (she knew how much he LOVES new T-shirts) and a Happy Birthday pin. He is wearing both in the picture. Then this morning I put him on the bus wearing a huge cloth birthday hat with candles on top. He was decked out! From what I can tell, school was all about David today. I sent him with a ton of cupcakes. He came home with a huge balloon tied to his wheelchair that one of his classmates had given him and the hat still on his head.

When he got home, I showed him a fun e-card his Granddad and Aunt Wanda sent him. He really got a kick out of that!

He doesn't ask for much for his birthday. Usually his list includes the latest Pokemon or Mario game for his DS hand held game system. As you can see, he was pretty thrilled. Next week we will have a party with a few of his friends.

I know it's been a while since I updated David's blog. There really hasn't been much to report since there hasn't really been any positive changes from the DBS surgery. Today's post is all about David's birthday. Soon I'll write and give an update about the most recent happenings concerning David.
Thank you to all who sent David birthday messages on my Facebook page. He loved it!

I created a photo album of the last 8 - 10 years of David on my Facebook page. Feel free to go over there and see them if you want. Just click on Facebook to get there.

Thanks again for following David's journey!
The Lord make His face to shine upon you and be gracious to you!

Dayna

David the Trickster!

2010-10-17T14:34:00.000-07:00

Always the Joker, David thought he was so clever taking his feet out of his shoes while they were strapped down in his new wheelchair! Speaking of his new wheelchair, I don't think I've told you about getting his new power chair. After waiting several months, the chair as well as the stander was completely approved by insurance!! A big blessing!

More Tricks

Because of David's propensity for being tricky, we had to have the controls to his new power chair moved to the back of the chair so he couldn't be "in control". Even at that, he can reach behind his head and press the buttons and move the joy stick. The other day he ran into the china cabinet! Hopefully the novelty will wear off soon!

There is quite a learning curve with the power chair! We've put plenty of dents and gashes into door frames, walls and doors! We are very slowly getting the hang of using it. He loves using it on the school bus and at school. Although they were a little leery at first, the staff at school is getting used to maneuvering it too. One of the great things about this chair is the ability to tilt it so that he can reposition himself which will help his posture and make sitting in a chair all day more comfortable. The real trick is figuring out how we are going to transport it in our van. Many people with a power chair get a conversion van. At this point we haven't decided what to do. We don't really want to have our van converted since it is quite old. Portable metal ramps are pretty heavy and bulky. If that's the only choice, I won't be taking David many places. At this point, we are still using his old chair when we take him anywhere in the van.
I plan to make a few appointments with friends who have power chairs so we can see how they transport their chairs.

The stander is a whole new ball game! We've never used one before. It helps him stand in place fully supported to strengthen and stretch his muscles. I'll try to take a picture of him soon and put it up on the blog. He seems to enjoy standing in it and playing his game boy with the support of a big tray. Although cumbersome, I'm sure we will get it down to a system like everything else.

Now we need to really get working on getting David a new speech devise!
Thanks for following!
Until next time!
Dayna

Video Last Winter

2010-10-04T12:23:00.000-07:00

Hi Friends!

I had forgotten about this video of David we took last winter. It was about 4 months after surgery and the settings to his stimulator had been changed maybe 2 times. No matter how much strain is involved, he always somehow manages to play his DS Gameboy!

Summer Recap and DBS Adjustments

2010-07-26T18:06:00.000-07:00

I can't believe summer is about to wind up and school will start back in 2 weeks! David has had a great summer with staying up late, sleeping in very late, watching his shows, playing his games, playing on the computer, a few fun times with friends, Special VBS, and a little bit of swimming.

Swimming

Getting David in the pool isn't the hard part. I just wheel him up to the edge of the pool, unbuckle his seat belt, help him stand, count to 3 and give him a little shove. He goes in with a great big belly flop and loves it! He comes up grinning but has to be constantly reminded to close his mouth so he won't gulp the water or choke.
It's getting him out of the pool that is the real trick! It usually takes 2 people. So that's why he hasn't been in the pool quite as much as I had hoped since we have to carefully schedule it around a time when Marshall is home so he can help me get him out.

Family Time

Probably the highlight of the summer was having Rachel, Michael, Caleb, and baby Abby come for a visit. It was so good to see them! David had fun holding Caleb's hand when he would squeeze by him. He also really enjoyed the chance to hold Abby in his lap for a few seconds.

DBS Update

Since the scare of possible seizures in May, Dr. Ledoux hadn't increased the stimulator all summer. But last Wed. we took David for a regular appointment and he increased the voltage to 2.5 and increased the width of the stimulators. I don't really understand what the second part means. Maybe I can get Marshall to go into a better explanation later. Since David has done well with the adjustments and since we really haven't seen any real noticeable changes yet, Dr. Ledoux decided to start taking a more aggressive approach. After he turned up the stimulator he had us wait in his office for about 45 min. just to be sure David didn't have any adverse reactions. He seems to be doing fine although it may take several weeks to see any real positive changes.

Wheelchair, Speech Devices, and Such

With the possibility that David's insurance could change when he turns 21 (next April!) we are trying to get David set up with several pieces of equipment he has been needing. We are in the process of the insurance waiting game and red tape again with another wheelchair. Hopefully this go round will go more smoothly than the first time. At this point it looks like we will be putting in for a power chair. That's a scary thought considering David's sense of humor! I also hesitate about this move because it seems so final. I believe that David will get better but if he gets comfortable with a power chair, will he be motivated to get better or will he become lazy and complacent about it? Regardless of what kind of chair we get, one thing we know, it will be a chair that gives him a lot more support for his trunk and the ability to change positions. We are also waiting to get the ok from insurance about a stander. A stander will help David to be in a standing position safely for short periods of time, which will help strengthen his muscles and bones. The last piece of equipment we are looking into is another speech device. His AlphaSmart has worked wonderfully. But as his ability to speak has gotten progressively worse we are seeing the need for a device that can do more and will meet his needs a little better. In our research we have found a few apps with the ipad that have been created especially for people like David. So, therefore, we are looking into getting him an ipad by the time school starts.

This has been a rather long-winded post! Hopefully I won't wait as long for the next update!

Thank you so much for keeping up with us. We appreciate all the questions of concern and especially your prayers. Our God can do great things!

God bless!
Dayna

Summer's Here!

2010-05-27T20:27:00.000-07:00

So sorry it's been a while since the last update on ole Dave. There really isn't much to report. The last time I took him to his Dr. here in Memphis, Dr. Ledoux decided not to make a change to the settings. He wants us to do an experiment. Since David's speech has gotten worse since DBS he wants us to turn it off for a little while and see how his speech is. Apparently, turning it off for about 5 or 10 minutes is long enough to possibly see any difference. At the next appointment, which is in July, we will report back if we saw any difference at all. That will give him ideas of how to change the settings. But otherwise, his Dystonia doesn't seem any worse. We just need to get him standing up more so his bone mass doesn't shrink. Soon, we hope to get some Physical Therapy going.

We have so much to be thankful for. David has a great disposition and seems perfectly content to be home and play his computer games and watch his silly shows. With his easy going way, it's easy to let him and not make him do something active.

Sister Hannah's College Graduation

It's hard to believe that Hannah's college years are over! Seems like we just took her to Bryan just last year! We had a great time going to Dayton, TN for Hannah's graduation. We met my sister and my Dad there too. Here is proof that Hannah graduated!

Please Pray For Michael

I would like to ask you to pray for a new friend. Michael is 14 and has severe Dystonia. He and his parents live in St. Louis. When I went to see our new grandbaby in March I got to meet Michael and his parents. He had DBS surgery a few months before David. His doctors decided to take a more aggressive approach to the setting changes. Michael has not done well with the changes. He has been in and out of ICU for aspiration pneumonia, swallowing issues and breathing problems. He is now on a feeding tube. His mom is desperate for answers. Please remember Michael. I don't think he has the development delays that David has but he can't talk at all. He loves to get mail so if you want to send him a card let me know and I'll send you his address.

Thanks again for following our journey!

The Clown and His Friends

2010-04-24T13:31:00.000-07:00

Ever the clown, David posed well for his birthday pictures. Here he is with some friends from church. The Jacksons popped in for a surprise!

A few days later we got together with Sammy and Margaret and their moms to see a movie and have Dad's famous homemade pizza!

As always, a great time was had by all!

Happy Birthday David!

2010-04-08T05:28:00.000-07:00

Today is David's birthday! The big 2-0! It started out rather rushed and crazy with getting brother John up and to the airport for his choir trip to San Francisco but I know he will have a great day with all the birthday high-fives at school.

The Alien!

2010-04-01T04:44:00.000-07:00

Oh No! An Alien has taken over David's body! APRIL FOOLS!
Let me just warn you that if you plan on seeing David today you need to know that April Fools Day is one of his favorite holidays. He already told me a roach was on my head and that Laurel and Hardy are coming to our house today.

Yesterday I took him to Baptist East for a CAT scan, EEG, and EKG. He did really well! Now we are waiting for results. In the meantime, the nurse at his neuro's office called and set up swallow test for next week. I'll let you know the results.

We hope you all have a wonderful Easter as you celebrate the power and resurrection of our Savior Jesus Christ!

The Continuing Journey

2010-03-30T06:42:00.000-07:00

It's been a while since I gave an update about David. That's because there really hasn't been much to say. But before I go any further, I want to thank all of you who sent emails and Facebook messages when I sent out a prayer request the other day. It really means so much knowing that there are so many out there who really care about David.

Now on to the latest update.
Last Friday the school called and said David had a seizure. Now I've been told that a "Dystonic Storm" looks like a seizure so I assumed that's what it probably was until they described it. So it appears that he really did have one that lasted about 45 seconds. Dr. Ledoux says that it is not uncommon for people who have had brain surgery to have seizures at some point. So on Wed. we will take him for some tests to see if we can come any closer to finding out if he is having seizures and what could be the cause. It looks like David will need to be going on meds for seizures. I hate to give him another medicine (that will make 5) but Dr. Ledoux assured us that they won't conflict.

In spite of this new development, David continues to be his usual happy and laid back self. We haven't seen any real benefit yet but the setting and voltage changes have been ever so slight. Being on the internet support group for Dystonia has really helped me realize how slow the process can be and that, once again, patience is a virtue!

Although we are looking for and praying for huge benefits, we are learning that, at the same time, there could be other side effects and developments that aren't so desirable. I have met some very dear people who suffer greatly from a number of issues with Dystonia, and some may be even from the DBS. The issues I've heard about are swallowing issues (to the point of aspiration pneumonia in some cases!), digestion (where some have needed a feeding tube), and more difficulty with speech. My prayer, of course, is that David's swallowing difficulties won't get any worse and that they will get better. I would ask you to pray for him in this "journey" that he will not develop these negative issues and that we will start to see some positive results in the coming months.

Once again, thank you so much for your thoughts and prayers!
Dayna

Setting Change

2010-01-29T06:35:00.000-08:00

Hello friends,
After about 2 months, David has finally had his setting changed on his battery. His battery voltage had been set at a very low setting of 1 but now Dr. Ledoux in Memphis has increased it to 2. In chatting with the Dystonia group online, we are learning that there isn't usually a noticeable difference until about 10 - 12 days after the setting change. Even at that it isn't a guarantee. We have also started decreasing some of his medicine since Dr. Ledoux noticed that David seemed more lethargic. Once again, the name of the game is Patience! Thank you for following us on this journey and for your prayers!
Dayna

For your viewing pleasure I'm putting up a funny picture of the Camp boys wearing their cool hand-knitted caps they received from Rachel for Christmas!

Powerful Man

2009-12-05T04:40:00.000-08:00

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!

2009-11-20T10:47:00.000-08:00

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!

2009-11-18T09:53:00.000-08:00

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...

2009-11-14T17:13:00.000-08:00

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!

2009-11-08T15:59:00.000-08:00

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!

2009-11-05T06:55:00.000-08:00

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!

2009-11-03T05:48:00.000-08:00

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!

2009-10-28T13:51:00.000-07:00

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.!

2009-10-25T20:46:00.000-07:00

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 :

that David would fully cooperate so the doctors can place the screws in the exact place.
that the doctors would be able to put the screws in the right place.(is that redundant?)
that David would stay healthy.
for traveling safety.
that we would be a light to all we come in contact with.
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

2009-10-14T08:36:00.000-07:00

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

2009-09-27T19:02:00.000-07:00

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.

2009-09-07T06:17:00.000-07:00

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

2009-09-02T08:53:00.000-07:00

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!

2009-08-28T15:46:00.000-07:00

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

2009-08-19T20:39:00.000-07:00

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

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.
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.
Nov. 4th - Stage Two - The actually surgery to implant the leads into his brain. He will stay over night or possibly 2 nights.
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

2009-08-13T21:14:00.000-07:00

This is a short video I took of David while he was watching something exciting on the computer. The purpose of the video was to show his doctors at Vanderbilt Medical Center how his dystonia acts when he gets excited. They used it in their meeting to determine whether or not to recommend DBS (Deep Brain Stimulation) for him. They recommended it.

Back from Nashville!

2009-08-13T15:47:00.000-07:00

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?

2009-08-12T17:38:00.000-07:00

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.