David's 21st Birthday!

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

Video Last Winter

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

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

The Continuing Journey

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

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

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

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

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

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.