Wheelchair Under the Weather

We woke up to Dake's chair not working.  We can not get the joystick to work. Maybe the moisture from all the rain?  Maybe just completely worn out.  Phillip and David started disassembling the joystick and now parts are laid out on the table like a surgeon performing and intricate surgery. Lyndsey and I have  researched the Baltimore area wheelchair repair places and a place tor rent or purchase a manual chair for temporary use. We can not get his chair to go completely into neutral.

 Lyndsey found a drug store with a manual chair several miles away. (after calling 17 places). She, Gracey and David are on that adventure currently riding and switching public buses until they find the destination. They called and are on their way back but need us to look a couple of connection points.  We had to purchase a portable temporary wheelchair.  Poor David had to lug it all the way back in a box on the public transportation. 

They  returned now and we have to assemble the new chair. We had to borrow tools from the hotel maintenance. We got him set up and we went to eat breakfast finally at 1:00 in the afternoon.

I keep repeating the follow post to myself over and over again.

                       "God will not give you more than   
     you can take, He may make you bend but you  
                              won't brake........"
                     Group One Crew, HE SAID. ll

I called several repair places and called emergency numbers. I had one man return our call only not to care.

I called our local repair guy, Mike Provines with AAA Home Health and ask if he could over night us a joystick.  We sent him pictures and he is going to do his best to help us out. Thank you, Mike!

PRAY THIS WORKS!

If this doesn't work we will have to ship the wheelchair back I guess?

Dake is not comfortable which cause more stress on everyone.

Please Pray for US ALL.

Phillip is flying back to Alabama tonight so he can get back to work tomorrow.

The Day of Test and NOT

Testing @ Johns Hopkins @ One Year.

Our day started with Dake doing ultra-sound of the heart’s artery in the arm.  This test was not too bad on the pain scale. He has to wear a blood pressure cuff inflated on his arm during this procedure. It is on his arm for 10 minutes. So dumbness (lol, this is obviously a slight typo but Phillip, who is still laughing, insisted I not change it to numbness as it should be) sets in but no pain.

He went next to get his weight and height. The ordinary type doctor visits.

He has lost 4 pounds since his 9 month visit.

W00-H00!

He has lost 10 pounds in a year. Having a sister with culinary skills has paid off. YIPPEE!

For a non- ambulatory person in a wheelchair full time losing 10 lbs. is awesome!!!

He then moves to another room for an EKG. This went smoothly and easy.

We go to yet another room for the grip and pinch tests.  This is the test he had been anxious to see if he has improved as much as he had at 9 months. Every 3 months since the beginning he has gradually gotten improved results.

 (The natural progression of Duchenne MD boys is to lose muscle strength and NEVER be able to regain it. (When it is gone, it is gone….)

At 9 months Dake got his best score ever. So today we were all anticipating great news.

They test is done on each side.

Today the results were disappointing. Unfortunately his grip strength and pinch strength has declined from the 9 month test.

Pinch test	Pinch test	Grasp test	Grasp test
9 mos.	12 mos.	9mos.	12 mos.
Left hand	Left hand	Left  hand	Left hand
4	2.0	5.4	4.3
Right hand	Right hand	Right hand	Right hand
4.5	3.0	7.9	5.0

His pulmonary function showed some improvement but the Doctor believes this could be due to an added non-invasive ventilator our pulmonologist added at night time about a month ago.

Pulmonology	TEST
6 months	12 months
.73 liters of exhalation	.92 liters of exhalation

We left this building and headed across the street for Dake to get the Cardiac MRI.  It is 1:00 in the afternoon and Dake has not eaten.  He could not eat because of the blood work but the doctor’s schedule ran over and he only had 10 minutes to eat and get across the street. We should have had an hour and a half.  We stuffed half a chocolate chip muffin down him and a sip or two of o.j. and off we went. 

The MRI crew needed to get a contrast i.v. started for contrast for the cardiac MRI. They worked and searched and could never find a vein. Finally they said it will not affect the test results and chose not to do one. Woo Hoo!

 They just made Dake’s day.

NO MORE POKING ON DAKE FOR TODAY!!!

Phillip was the chosen one by Dake to stay with him during the whole process. I stood outside the door until time came until the door had to be closed. The prep time was a total of an hour and twenty minutes.

At this point, you just wanna get it over with.

They lay Dake on his back and place these “grills” on his chest until they have to squeeze him into the MRI tube. They were literally pushing him in.

This went on for approximately 30 more minutes until finally it was “take-off” time!

The door closed and I walked around the corner to sit with the rest of the family. The estimated time of test was an hour and half.

10 minutes has gone by…

I see one of the three MRI technician go by, then another one, (that’s two), and then the third. I thought who is running “this show” if they all went out to the room?

Two more minutes go by and the door opens. Dake has been pulled out once again from the tube.

They think the bed that slides in and out of the tube is not functioning.

10, 20, 30 minutes pass and Dake still has the mountain of “grills” on his chest. David goes up to the door and demands they remove them at least until they figure out what is wrong.

They obey.

Soon Phillip and Dake have been set free of the room of forces. Another hour goes by and still they do not know the source of the problem.  

The research coordinator said they do not know for sure what is wrong but they would figure it out. She explained we must have this test done. We could either leave and go back to Alabama but we would have to return to do the test. It had to be done for the research or the result would not be accurate. Or we can stay over the weekend and hope they have it fixed by Monday at noonish.

Travel is such a challenge we chose to stay thru the weekend and hope the repair will occur as soon as possible.

So to wrap up the day. A bit of disappointing news on his results and definitely not what we had wished. Frustrated on the delay of the last test but know we have to have it done.

Staying thru the weekend and going to live it up and enjoy the sights….

Plan to go to D.C.

while we are stuck waiting on the repairs.

Big challenges lie ahead because we have no transportation.

No fear Phillip and Lyndsey are on a mission to figure out the public transportation. They will have it mapped out in no time.

So for tomorrow….nothing but Fun!

Please continue to pray. Thanks.

Arrived in Baltimore

        We arrived safely in Baltimore this morning around 9 a.m. central time. I knew it would be hot in Houston when we visited, and I knew it was hot in Alabama but I never thought Baltimore could be as hot. Most of the time we have spent here has been during the cold season.  It was 104 degrees yesterday.  It is exhausting.
We got out a little this afternoon but returned early because of the heat. We were all drained. Dake fell asleep and rested a couple of hours. Trying to keep him hydrated is not easy in this heat. He has to hydrate intensely prior to having blood drawn because of the difficulty he has had in the past. We decided to order in for supper and relax this evening getting ready for tomorrow's testing. We are watching, The Three Musketeers with the air conditioner turned to very (icicle) cold.
 (Yes, I know we are spoiled...ahhhhh!)

ANOTHER TRY FOR NEW PULMONOLOGIST

ANOTHER TRY FOR NEW PULMONOLOGIST

Dake had an appointment with the ONE pulmonologist we found in the area who had at least seen one muscular dystrophy patient. The office info us the doctor was not necessarily a Duchenne patient but at least muscular dystrophy.  So it was worth a try to see if he will work with us.

Dake and I meet Lyndsey and Brittany at Alabama A & M before his appointment. Lyndsey is looking at a couple of masters programs there.  She was like a child in a candy store.  It is a joy as a parent to see your child have a passion for something.  To know they have a desire do to something so strong and productive.

The professors were impressed with her credentials.  (Of course, my thought as her mom was if you are impressed with what is on paper wait until you get to know her!!!)

She was overflowing so much with passion she was offered a job before she had even committed to enroll.

She has many decisions to make ahead of her for her future.  But what a wonderful place to be, having choices is a blessing.

Dake and I left earlier so he could eat before his appointment.

We arrived at the new pulmonologist office an hour early.  I figured out I could get started on the mountain of paperwork I did not receive in the mail. We went into the lobby and found the location of his office. He was located close to the empty information desk in the lobby. The door had his name and the other doctor he shares the office with was also on the door.  We tried to open the door but the door was locked.  This was early afternoon time so I thought they must be at lunch.  The info desk was empty and so I thought well everyone must be at lunch.  Neighboring offices were busy with people coming in and out but I figured they had a different policy.   Five minutes till the appointment time the info desk attendant returned and informed us that the doctor had moved down the street. Really?... Seriously why not just put a sign up people!!!!  Better yet take down the doctor’s name off the door!

Extremely frustrated we rushed to the car as fast as we could with a wheelchair, waited for the one speed folding ramp to unfold, lower, wait for Dake to adjust his chair so he would bump his head, raise the ramp and wait for him to carefully drive in the van so he doesn’t give himself a scalp job, close both doors and now for me to jump in.

We arrived at the new office and repeated the above process in reverse and enter the waiting room drenched with sweat.  We explained to the receptionist our challenges.  She replied, Yeah, we moved last October.   This was our first time here. A sign would have been nice.  And the internet contact info needs a little update too. She wasn’t to compassion about our dilemma. We received the mountain of paper work and began filling them out. I was thinking, well, I guess we are the only ones with having trouble finding his new office until another man came in with a similar story.  (She did not seem to bothered about him either.)

Finally, after witnessing some waiting room drama with other patients we went back to see the doctor.

(Not getting a good feeling at this point but we will see.)

The doctor came in and was knowledgeable about Duchenne . He seems to be willing to work with us with the pulmonology issues. The thing that bothered me most was he was very negative about telling us there is no cure and he was limited in what he could do and most boys don’t live very long. (Of course we know all about Duchenne’s  and the negative sides . Dake could probably teach him a thing or two. )  I told him,  “I just wanted to know if you are willing to work with us….I KNOW you are not God. “

He agreed and that was that. He wants to do some testing after our Baltimore trip.

I just don’t want to be bombard with the negatives of the disease when our lives currently is positive with the disease. We all know this can change in a minute but let us enjoy the good while we can.  It helps anybody to say encouraging words to them.

Dake said maybe he thought we didn’t know. I said,  “Surely he did you have out lived all the ones you have known. They were almost all younger than you.  He had to know we knew the doom and gloom side because you are eight years over what the doctor’s said you would live!”

Our former pulmonologist who moved to Arizona was so encouraging and made Dake want to work at stay healthy.   I really miss him.  I think maybe I could have used a little encouragement from doctor too.

But we at least have one familiar with muscular dystrophy and we are going to focus on that!!!!

"God will not give you more than you can take,
He may make you bend but you won't brake........"
Group One Crew, HE SAID

VISITS

Nick and Brittany are here now visiting. They are Dake, Lyndsey and Gracey’s first cousins.   Dake always enjoys family visiting. It seems to lift his spirits and seems to motivate him too. Right now all of them are in the kitchen plus Phillip and a friend of Gracey’s, Chesney cooking supper. The chatter and laughter is joy to my heart.

One Year at Johns Hopkins for Dake’s Heart Research

 We are coming up on the one year mark of Dake’s research at Johns Hopkins in Baltimore, Maryland.  The whole family plus Phillip is planning on making the trip. We want to be together as we wait for his results and celebrate (hopefully) together.  He has been working out in the swimming pool hoping to inflate his results.  We plan on putting Dake in his old chair because of the damage done in the past.  He will have a hard time adjusting back to it but it is best considering our luck with airlines and wheelchairs.

Lyndsey will be having a birthday the following Monday so she is going to pick a place in Baltimore to celebrate her special day.  It is so fun having a certified chef in the family.

A VERY Stressful Day for Dake

A VERY Stressful Day for Dake

Talking about stress, Dake had a major stress moment on Tuesday (July 10).  The lady (an angel in my opinion) who comes and helps us out with the house and Dake was at our house.

 Dake has a station set up for him in a small room off the kitchen. This is next to his bedroom and kinda gives him his own personal space yet still in the house.   My dad custom made him a table (desk) to house his computer, television and a telephone. The garage is off this room and he will go outside often and enjoy the sun.  This is the way he goes to get to the front of our house. We leave the door slightly cracked so he can come in when he wants to get out of the heat. My mom and dad live across the street kinda caddy cornered from our driveway. Our mailboxes are on mom and dad’s side of the road. I tell you all of this info to continue with the story.

Our living room is in the front of the house away from Dake’s area.  Lyndsey and I were in the living room on this day during this time.

 Dake had had his breakfast and retrieve to do computer stuff or watch a movie.  This is his morning routine unless he is a little tired and he will go outside in the sun and maybe nap some….(Lyndsey calls Dake a cat  because he migrates to a warm sunny place to nap.)` The lady finished and came thru the living room and said, “Bye” then left.

Lyndsey and I were busy doing computer work in the living room and Dake was in his area watching a movie are working on something.  Usually every 30 minutes or so, Dake will come visit us in the living room when he takes a break or if he needs something.   This morning about 30 minutes had passed since the lady had exited out the front door.  I thought to myself, ‘Dake must have found something interesting this morning because he hasn’t been in to see us for a while.’  Another 15 minutes or so go by Dake and my mom comes from the back of the house  into the living room.  Dake is drenched in sweat. He said in a panic, “Didn’t you hear me calling?”

 Lyndsey and I are totally confused.

Why was my mom with him? Why was he covered in sweat if he was watching a movie? Why did I not hear him if he was in his computer area?

I replied,” No, Dake, why?” I am still very confused.

Dake said the lady let him out the garage before she left through the living room.   She then came into the living room and said, “Bye”, but did not say anything about Dake going outside.

I just assumed he was in his computer room.

Dake went into the garage and fell asleep. He got sweaty while sleeping and his had slipped off the joystick and arm rest.  His finger must have turned his chair electricity off which is near his joystick.  He woke up but he could not get his arm back up on his arm rest.  He screamed and yelled for Lyndsey and I but we never heard him.  He was in the garage about 30 minutes yelling for us.  He could not move or get anyone of us to hear him.  Luckily my mom went out to get her mail and thought she heard Dake’s voice.  She thought at first he was in the backyard calling for us.  Dake said he was at the point of saying ugly words.  (He apologized to his grandmother if she had heard anything.)  She found him in the garage and brought him inside.  I felt so bad. How horrible!  I did not even hear him.  Neither one of us did. If I had known he was outside I would have had my ears in high radar mode.  I usually check on him frequently when he goes out these days because of the heat. 

Ok….I deserve the “Bad Mother’s Award” for this one.  I do.  I do.  Just go ahead and say it.

He got well hydrated and was fine. Thank goodness.

 Thank God my mom loves to get her mail and has good hearing.

Dake was in an awesome mood the rest of the day.

 I told Lyndsey maybe 30 minutes of gut curdling screaming was a good stress reliever we should all try….

(I MUST make sure and tell my mom our plans if we choose this method of stress relief because she might have a little added stress going to the mailbox!)