Stressed spelled backwards is DESSERTS!

Stressed spelled backwards is DESSERTS!

Stressed spelled backwards is desserts!  This statement helps me sometimes….just knowing it makes me happy and feel better.   I get tickled when the doctor and or anybody who does not know us ask, “do you have much stress in your life?”

  Ohm, maybe a little……but doesn’t everybody?

Ok.  Everybody does have stress BUT what is the best way to channel it or relieve it. I guess I feel like stress is like air in a balloon.  The more air equals more stress.  The balloon grows and grows until it of course burst.  I feel like our family, as a whole, is so good of riding out the storms but we let the air in balloon little by little, day by day until the balloon has reached its maximum capacity and then everyone blows up.

Then, we have a “family” meeting and everyone gets it out.

  We are exhausted from all the “air” that has built up”….

We talked about doing it like once every couple of weeks or so but honestly we are afraid it would be a total world of “overload” all the time. Frankly we don’t have enough emotion energy.

Having to do 95%, (day and night), of another person’s movements is not only hard on the individual unable to complete the movement but the individual(s) who is helping. ….in other words this can equal stress for everyone even on the best of days.

We are trying to work on stress as a whole.  .  Dake is stretching and working out in the pool a couple times a week.   He has been working really hard.  (Water is the best place for a Duchenne Muscular Dystrophy boy to exercise. The water takes the weight off the muscles making it possible for lots of boys to have the sensation of walking long after they are in a wheelchair. Dake swam well as a child.  It was the only physical exercise he could beat his 15 month old younger sister at when they were younger.)  

Another fun fact about Duchenne Muscular Dystrophy is they all float.

This is nice when they can turn over by their selves but not good if they can’t and land up face down.  We have to weigh Dakes legs down in the pool so he can experience a little walking.  We always tease him and say we are with the mafia and this is our version of concrete blocks.

We have all been exercising regularly and eating right for a while now.

 Which is always good….not always fun but good.

Our individual plan for stress is……

 Lyndsey gardens and cooks. Gracey has gymnastics.

Dake retrieves and gets on a computer or goes outside by himself.   David retrieves and starts cleaning angrily. He has football games in the fall.  (I, personally, am not always sure football is a stress reliever….it seem pretty stressful as serious as he takes it.)

I paint.

We all have our outlest but it seems we need more sometimes.

Anyone have any suggestion please send me your comments.

Spots, Dots and Polka Dots

Spots, Dots and Polka Dots 

My "studio"  dog is a dalmation named Crayola.  When I paint in my studio she stays right beside me for every stroke. She is my loyal friend.

  She had 12 puppies 2 weeks ago.  Ten beautiful puppies survived and are thriving very well. They are cute little rolly pollies with polka dots. Taz. the dad of the pups is a liver and white dalmation and Crayola is the traditional black ands white.

So far one little girl puppy is covered all over with liver colored spots. There is possibly another couple pups with their dad's trademark....only time will tell. Dalmations are not born with any spots and the first sign of any dots and spot is at a week. They are mostly light at this time and continue to come in and get darker upto a year.

We would have never quessed she had 12 little pups in her tummy.  She has been such an intentive mother and is doing a great job.  Her puppies will be ready for new homes around August 5th...  ish....We are selling them if anyone is interested. The liver colored spots are rarer and the picks of the litter  will sell for $350.00 and the traditional black and white cuties will sell for $300.00. They will be CKC registered.  Mom is CKC registered and Dad is AKC registered. 

 Let us know if you want to take a look to buy or just for fun.

I wanted to say "Thank" to those sending in suggestions for Dake (as requested in "Needing Something") in last post....some awesome ideas...PLEASE, Please keep'em coming.......

Needing Something

Something to Do

We have known Dake needs something productive with his time for a while now.   He has tried different things.  Right after high school he wanted to work.  He was a tour guide for Children’s Museum for a year and a half.  Then he decided to go to school for a couple years and had to stop because of fatigue.  He did go to a couple of class with Athens States continuing education.  Dake needs something to do.  He has seen every movie and T.V. show American and British, well, just about.   He is great on his computer but limited physically in his abilities. He can fatigue easily but it is some better for now.   He can move his fingers to do his computer but needs help with raising hands and arms.  This has been a challenge for all of us for such a long time. We have just run out of ideas.  If you have any ideas even if you are not sure, please make a suggestion.

We have prayed and prayed for answers and now we ask you to help us pray.

Postcards for sale

Postcards for sale

Cards have six current paintings on front of cards with a correspondence back side

$2.00 each or $18.00 for 10 postcards

You can order postcards on www.artbylynn.etsy.com

Dake's NEW Wheelchair

Dake’s new wheelchair

We have been working since December of 2011 to get all the paperwork finished  and approved for Dake’s new wheelchair. The last chair cost $27,000.00.  He usually gets a new chair every five years.  When he was in high school Lyndsey got a  used car  when she started driving. It cost approximately $5000.00  Dake got a  new wheelchair when he was a senior. She was jealous because her dad spent only $5000 on hers and 24,000.00 on his. She was kidding ,of course. Insurance  and several agencies equal a wonderful thing.

David described it best when he said “he has the Cadillac of wheelchairs.”

His new wheelchair and his last three wheelchairs have been  a Permobil. Permobil is a Swedish company with a headquarters in Lebanon, Tennessee. Dake always wishes a Swedish girl would be included. (I am sure that would be an extra fee.)

 Dake, Lurch, (his service dog) and I flew when Dake was 13  years old to a physical therapist, named Laura Case,  at Duke University whom specialized in Duchenne Muscular Dystrophy. She told us then what we needed until he would be twenty years old. ( Which is the usual lifespan of a Duchenne boy)? Now at 28 years old, it is a great design for him still today with just a few added adjustments to fit his body. Dake decided on the color orange for his Dad. ( Tennessee fan) It was the first time it has been an option for a color.  It has seven motors. It  tilts  (which helps with breathing and comfort), reclines, leg rest that raise up and down, front wheel drive, has a seat elevator, (Helps him adjust to the table he pulls up to in a restaurant or school. It helps in a place like Wal-Mart when an item is up high on the shelf. It aids in self-esteem because he can be at eye level when having a conversation. ) This new model of Permobil has a new computer system on it which is ….awesome  It has an indoor and outdoor mode.  It has a pedometer on it that keeps up with his mileage.  It can go up to 6 mph…..(I think I have a new running coach. Not sure these short legs can keep up with him.) And his favorite part is it has a clock. I know this sounds simple but I have duct tape, zip tied, and glued clocks  on his previous chairs. He has challenges with time. Yahoo! No more pages over the Wal-Mart intercom.

Seven months later Dake heard via email his chair was in but still had to be put together. Two weeks was the approximated time frame for delivery. He was so excited.  Finally the day arrives…..Mike the wheelchair guy rolls in the beautiful bright shine new RED chair.  Dake says nothing about the color. I came in later and admired the beautiful chair as he showed me all his new gadgets…I noticed it was red but thought he had already it. When Mike left I asked Dake about the color. He said he liked it so he did not say anything.

Red verses Orange….Yikes….kinda hard for an orange fan to swallow.  It is more like a cherry red.  And  Dake was happy and that was what really mattered.

This chair came in with a total of $36,000.00

Now …if I could  only program it to clean the house……

Dake looked like I have seen his face on Christmas Day. He later told us he was caught up for the next 10 Christmas’.

We are so, so, so very blessed and thankful  to be able have this elite type of equipment for Dake.

The Learning Experience

The New Pulmonologist Experience

We waited patiently  in the vintage paneled waiting room.  It was after lunch time frame.  Soon a large robust  woman, who had sweated off most of her make up( but had reapplied her ruby red lips tick), called us back cheerfully. I cheerful face is always welcoming in these situations no matter what condition  it  is  in.  The nice lady had  to take Dake thru the kitchen  break room  area  to get him to the x-ray room. The other door way was too narrow for him to enter.  We went for two other stops before making  it  to the “official “ doctor’s examining  room.  We kinda felt like we had been taken by the arms and swung around in circles like when we were kids.  Finally were able to catch our breath while waiting  on the doctor. The doctor comes in and was reading his file and introduces himself to Dake and then to me. He seemed to me to be in a rush.  He began to ask Dake questions about his cough.  He is asking  his questions quickly. I could tell this question began to make Dake nervous. (He told me later he felt like he was getting the third degree.)  When the doctor asks  about specific  medication or things Dake might not know names of I would tell him specifics. This seemed to irritate the doctor.  The doctor began to ignore me.  So I stopped him and started asking him a few questions…I asked him if he had ever worked with a Duchenne Muscular Dystrophy patient.  The doctor answered quickly in a defensive tone.  He said, “I have been practicing medicine  for thirty years!”  Of course this did not answer our question.  So I continue to look at him for more answers and he blurts out . “I have seen probably (he hesitates) four or five.”  I replied, “O.K., good!  He immediately turns from me and  ask Dake a few more questions.  Then he sits there and reads a little and says to Dake, “Now which muscles are affected with” your” Duchenne Muscular Dystrophy?   Dake blinks three times and replies, “Uh ….All of them!” I then describe  and tell him the progression of the basics of Duchenne Muscular Dystrophy.  In the background Dake looks at me and widens his eyes as to say, “Is he serious?”  My thoughts exactly. We politely listen to the rest of what he said and got out of there as soon as we could.  He had no knowledge about Duchene Muscular Dystrophy. He would have never asked the question he did.   Was it not obvious what muscles are affected when a person in a motorized chair  cannot even raise  his  arm to shake hands with  you . (He just needed to be honest.)

We came home and I called at least seven pulmonologist before I found one doctor who has worked with a Duchenne.  We go later this month so we will see.

I credit this doctor for teaching me something.  He continued to ignore me and I realized if this had been a situation where Dake could not answer  about his personal wants and  needs we must  have legal paperwork in order so the doctors will listen to us. We do not want to be in the middle of legal issues at a critical time with Dake’s health.  So Dake and the family are working on these details….So thank you arrogate pulmonologist.

Home Sweet Home

The night we returned home from New Orleans.

We got back home from the trip on a Sunday evening.  Dake  had a runny nose at the beginning of the trip but had gotten much better as the trip came to an end.  When we got home within minutes he started coughing.  The cough continued until he could not breathe very well.  We pulled out his electric nebulizer or the first since January.  We gave him a treatment with two medications in it.  Soon he was able to relax and breathe with ease.  The cough had come on out of nowhere mimicking the episode  he had back in the winter.  That winter episode lasted a month or little longer.  I pray this was not going to be a repeat performance. 

Dake slept pretty well Sunday night with no more coughing.  He woke up the next day feeling fine.  I was feeling better about him when I left to drive Gracey’s carpool.  Lyndsey would be home with him that morning.

 I left early to take Gracey to gymnastic.  In the summer Gracey wakes up earlier than she does for school. She practices 8:00 till 1:00 Monday, Tuesday, Wednesday and Thursday  equaling 20 hours a week.  Today was my turn to take the carpool of the Athens girls and drive them to the gym in Decatur.

I got the girls to the gym and watched them as they warmed up. They so moved far more than my body would allow me to that early in the morning.  I had nested in my usually spot and pull out my projects for the allotted time for that day.  I would watch when Gracey and her teammates were on the side of the gym where I could see but the other times I try to stay productive as much as possible. I had just got a good rhythm started with my work in front of me when my phone rang.  It was Lyndsey calling explaining Dake had another coughing episode during his bath.  The Home Health crew had called Lyndsey in and she set up his breathing machine and had already had the medicine going. She said he was asking for me.  I told her I would call the general doctor and the pulmonologist and for her to call me immediately if it did not settle down She called back to let me know he had done well with the treatment . I

 I knew I could think better if I called from there instead of in the car or in the middle of Dake having difficulty breathing. I also had to call my” back-up” mom and see if she could pick up the girls in the afternoon.  I also called my mom to go over and check on things but I did not want Lyndsey to have to handle things by herself especially if things did not get better. Don’t get me wrong, she had everything under control but I wanted her to have back up just in case. Our family and a few close friends are an amazing network when things get go a little haywire. I thank God often of the awesome people in Dake’s life.  I got my calls made and alerted Gracey of what was going on and headed out the door. I had a 25 minute drive to home.

Our former pulmonologist  had moved to Arizona (whom we loved) and we basically were starting all over. I have talk to the pulmonologist’s receptionist getting the general information and echoing paper work about a month ago. But Dake has not actually seen him yet. The general doctor agreed we needed to go onto the pulmonologist in Huntsville but he was on “standby” in Athens if we need him.

Dake was mad he had to go into Huntsville.  He did not want to waste his time.  (this was my first sign he was feeling better).  We loaeded up Dake up and my mom and I headed to the new pulmonologist.  There are a few things about Duchenne Muscular Dystrophy that is handled a little different when it comes to medicine. Pulmonology is one of those components a doctor must  understand  Duchenne Muscular Dystrophy or at the least he needs to have experience with muscular dystrophy in general. ( David and I learned early on the knowledge of Dake’s disease we could attain  was the best defense in helping him get the best care.  We  attended countless  workshops, medical  conferences, interviews with research doctors and physical therapist and read books and books. We  had   medical dictionaries  next to the other books looking up words and definitions to make sense of the information we were trying to absorb.)