Home Ever Loving Sweet Home

Home Ever Loving Sweet Home

Home is so nice and glad to be here.

I have to step back just for a moment to share this story.

We have been traveling back and forth to Baltimore for over a year now.  We travel with the same airlines because they fly out of Huntsville and they are the least expensive.  The saying you get what you pay for is so true even in airfare.

The crews of the past flights were always impatient and let us know they were ready to go when the aircraft landed.   We are always the last ones to depart the plane because it is easier to get Dake off the plane when all the others are gone. (Plus we take more time to him get off, so no one has to wait.) The crew, (pilots, stewards and stewardess), has to remain with the plane until everyone is off the plane including us.

In our experience, most of the time it takes a while for the airport crew on the ground to bring an aisle chair for Dake to exit the plan.

Then, usually we have another wait for the ground crew to get his wheelchair to the door of the airplane so we can transfer him from the aisle chair to his wheelchair.  The crew in the past has added to our frustration because they are ready to get to their destination and we are “holding” them up.

One time a captain was so ugly about having to wait and made a comment loud enough for us to hear.  David let him know he did not appreciate his comment. A few words were exchanged and the captain threatened to have David put in jail.  (This was not a pleasant time.)

But on our last trip home we are not sure if we were all hallucinating from exhaustion or maybe just delirious from the calamity of events from Baltimore.

As we landed we stayed in our seat and waited as we normally do but the next few minutes were not the usual.

As we sat comfortably chatting as the last passenger exited the plane. The smiling friendly steward came down the aisle and pulled our luggage from above in storage. He stated that we would need to just take care of ourselves and they would get our luggage and carry it off the plane to where we would meet the wheelchair.  I was speechless at first and replied,” Oh it is ok we can get it.”   He insisted to go through with his plan. “Whoa” that was nice and never ever happened before.

Then the ground crew brought the aisle chair and rolled it carefully down to our assigned seats. We are about midway back. It will take two and sometimes three people to get Dake situated and secured in this tiny thin chair. (Dake has no core strength or the strength to pull his arms in while rolling down the close tight aisle so someone has to hold him so his arms do not flop and get caught on the seats as we exited.)

It was late at night and only one ground crew came to help with Dake. (Usually two crew members come). David does all the lifting and gets him to the aisle seat and the ground crew guy was behind the chair getting the straps straighten so we could get him secured. The Captain of the plane come to us and gets down on the floor on his knees and gingerly straps Dake in his chair and then he backs out and holds Dake’s arms as they exit the plane.  I almost cried at everyone’s kindness. This just never ever has happened to us before. I am in shock.

Then the whole crew waits with us as we wait for his chair to be retrieved from beneath.  I am not sure what I looked like but when there was some trouble with the chair one of the stewardesses came over and hugged me.  Nothing was said just a kind hug. Finally the chair arrived and we all left together and as we separated I profusely thanked them but I could not adequately get my words out. They waved and acted like it was no big deal. Wow.

The kindness of those strangers touched us and we will never forget them.

THANK YOU TO THE AWESOME FLIGHT CREW OF FLIGHT 1873, ON AIRTRAN, ON JULY 24, 2012, FROM BWI BALTIMORE, MARYLAND TO HSV HUNTSVILLE.

A little kindness goes a long way but an abundance of kindness goes to the HEART!

 

Ryan Lochte Swims for Duchenne Boys in the OLYMPICS

http://www.parentprojectmd.org/site/PageServer?pagename=nws_index

Going Home Ever Sweet Home

The Cardiac MRI was run today on Dake but they were not able to get all the details they needed. 

 Dake was worn out from the manual chair and not being in his own bed.

The doctor told us they were able to get the core of the information needed for the research. Woohoo.  Home here we come.

 The test was run at 7:30 this morning but we would not be able to fly out until 8:25 tonight. This was  the earliest flight we could get. We were still hoping the new joystick might arrive today so we would not have to push the 357lb wheelchair thru the airport.  Especially since the wheelchair was not wanting to move easily.

We were also told this morning we may not get reinbursied for our hotel, flight, food and wheelchair that we had to purchase while waiting on the piece of equipment that never did get repaired.

This went over about like a lead balloon.

They had reassured us this was not going to be a problem before we agreed to even stayed.

The main doctor who wrote the research had given his word on the phone that it would be taken care of if we stayed.

 Needless to say we were not happy.

 We will hopefully find out for sure soon.

Dake, Lyndsey, Gracey and I went to see Brave.   The movie theater is next to our hotel.  David was waiting in the lobby

for the UPS man to walk thru with the new joystick that we all had anticipated on.

At 2:37 the UPS man came thru carrying several packages. In those packages was

 the well awaited joystick. HOORAY!

David and the very nice bellhop worked and worked on the chair until finally the familar click sounded and the chair could move.

A special thank you to Mike Provines with AAA Home Health was our hero.  If you ever need wheelchairs or other home health needs Mike is your man....we highly recommend him. He is with AAA Home Health out of Huntsville.

You would think if you are at Johns Hopkins Hospital, you would not have a need to call Alabama for help.

As we are loading up the van provided to take us to the airport a mother with a son in a wheelchair, about 14 years old,  was pushing and tugging his electric chair thru the doors of the same hotel.  I totally recognized the frustration.  We were getting our luggage out of baggage claim at the hotel so we did not have to lug our luggage around all day.

The bell hop who help David was helping this family as well. They were speaking Spanish.  I went over to ask if they needed help in English. The young man said his back wheels on his chair( that was just like Dake's )were not balanced. He would turn on the joystick and only one wheel would make contact with the floor and the other wheel would just spin. He was traveling with two women. One was his mother and maybe an aunt.

When it looked like it was not a quick fix I gave them the wheelchair we had purchased to help them until they could figure their problem out on his chair.

The were very appreciative. I explained it had saved us during a rough time and we hope it would help them.

We are currently at the airport waiting on the time for our flight.....

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Still waiting and Lyndsey's birthday

            Today is Lyndsey’s birthday (27) and we are still waiting on the cardiac MRI equipment to be fixed. It has been a bummer kinda of day waiting and hoping we could get called with good news. They only calls have been “not yet” or “can’t get it fixed” .

 The new used joystick is on it’s way and should be here around 2 ish toomorrow. Pray this works.  Getting the 357 lb chair to the airport will be a major challenge. We currently have Dake in a chair we bought at a Rite Aid drug store for $220.00. Dake’s poor body is having a hard time adjusting from a $36,000.00 wheelchair to a $220.00 wheelchair. He is sore and has no control so his spirits are low. (At least we are thankful it is only temporary.)

The last call was from the research coordinator saying they have found another place to do the cardiac MRI at 7:30 in the morning. Woo Hoo….at this point we would go at 3:00 in the morning if need be.

 The only flight we can take is at 8:25 pm tomorrow night. So we will be here a little longer but home is at least in sight.

We all need Snow White and the Seven Dwarves  t-shirts  labeled “Grumpy”. Attitude adjustments needed.

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!)