Summer's Here!

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

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!

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!

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

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

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

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