David the Trickster!

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

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

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!