Apr 16, 2014

Miraculous Mobility


Most of you know by now that we are fundraising for a wheelchair accessible van but might not know how that came to be. 

Summary highlights …

Manny got his powerchair.  It made me cry.  We take mobility for granted.  It was like watching first steps.  The moment is almost magical.

We had no way to get it home as our van doesn’t have a lift or ramp and we can’t deadlift 350 pounds up 3 feet. 

So the powerchair company graciously drove it to our house.  (Custom Mobility in Pinellas County if anyone is looking for a great wheelchair company!)

At that point he was able to drive around the house and explore for the first time.  He was able to play tag and football in the backyard for the first time in his life.  There were tears. 

I started looking into how much it would cost to convert our van (which still has many more miles in it) to one with a lift and then how much more to remove a row so he could stay IN his wheelchair rather than me try to lift him. 

It is shockingly expensive to do this.  I was complaining explaining to some girlfriends how I hated money.  They asked what I needed and I said that I needed a wheelchair accessible van I could actually afford.

Well, my good friend Shelli said she’d sell hers to us for $20,000.  And another suggested that I fundraise.  She said that everyone loves Manny and they might want to help if they just knew we had a need. 

And the idea was born that very day. 

Now what I haven’t told you is about Shelli and this van.  See, I know Shelli because we both have children adopted from China.  It’s how we met.  She has a homegrown son (now grown) who has the same basic skill level as Manny.  (Wheelchair bound but super bright, etc.)  And Shelli fell in love with Manny early on.  She is even the one who came down and photographed Manny for the cover of Mighty Manny. 

Their van is already wheelchair accessible with a lift.  Manny could drive up on the lift, the drive into the van and park.  He can stay in that chair for the ride.  Wow.  No lifting for me.  I’d not be hurting him. 

Now some more about this van.  It’s got LESS miles than our current van.  And it’s CUSTOM.  It’s decked out.  The kids don’t even know what all is in it as I want them a bit surprised when they see it.  They are gonna freak! 2 DVD players, chargers on each row, etc.  I can’t wait to see them!  This thing is worth WAY more than what she’s asking from us.  They were even offered more and turned it down. 

Our current van is still in really great shape.  I know a TON of adoptive families that have a slew of kids just like we do.  We needed to sell this van to pay for the new one.  One day I put it out there on Facebook.  Basically, we need to see the van.  Wanted to offer it to friends first.  By that afternoon, we had a verbal agreement.  By the next morning, a price was agreed upon. 

Now here’s the rest of that story.  I won’t share the WHO because she hasn’t shared the story yet.  But let’s just say it’s one of my adoption friends.  She had been praying for a 15 passenger van.  Their family has grown and they have to take 2 vehicles anywhere they go now.  New ones are very pricey and it’s hard to buy used since you don’t know if you can trust where it’s been, etc.  So when she saw mine for sale, she leapt at the chance.  We discussed it with our husbands and agreed we would pray for the right amount for the sale price.  We needed as much as possible because of the new van.  But we also wanted them to feel they were getting a great deal. 

Dan threw out a price to me and it was the one that had come to me.  The next morning we put out the number on the table.  And to our surprise, it was the same number they had in mind.  Go God. 

Now the details of how/when to pick it up.  We can’t exactly be without the van.  And wouldn’t you know … they want to come get the van within a week of us getting the other one.  There will be no time we are without a van! 

Meanwhile, the last piece is the fundraising part.  I decided to put it on GoFundMe.  Why? It’s one of the easiest.  Straight forward.  Simple to use. 

One day I put it out there and I saw several people share it on Facebook.  One was a friend I have never bet but we are connected because our kids share a disease.  I will not share all of her story at this point as she’d like it private but let’s just say … Manny has Merosin Deficient Congenital Muscular Dystrophy.  As did her daughter.  Unfortunately, her daughter passed last year unexpectedly. 

She shared my blob about the fundraiser.  She asked that her friends and family donate what they could in her daughter’s name.  And they did.  To this point, this one extended family has donated over 50% of the raised funds (Not counting the sale of the van of course).  I’m blown away. 

What’s even more interesting to me is … this family knows we are Christian.  I know this family is Muslim.  We all have respected each other in views and beliefs.  When their daughter died, I prayed that God would comfort them.  When they announced the birth of their new child recently, I thanked God for them.  When Manny is in the hospital, they tell me they are praying for him.  And I thank them. 

So much of this world is about division.  When truly, we are all so similar.  Shelli has a son with disabilities like my son.  She just wanted my life and Manny’s to be a bit better.  My van will make one family’s day just a little easier.  And giving to us in honor of this little one whose life was cut way too short, to see Manny continuing on, brings a bit of peace and closure to this hurting family.  And I’m struck by the humanity. 

I don’t know about you … but I’m tired of hearing how horrible this world is.  How hateful the people are.  I think the world is still a pretty amazing place.  Filled with people who are loving and generous and kind and beautiful and just trying to survive.  And every now and then they look up and see their fellow man. 

We offer that cup of cold water and a bite to eat.  We visit those who are sick or in prison.  We make sure the homeless person has warm clothes and a blanket.  And somehow the world is a better place. 

Well, I’m used to being on the giving end of these kindnesses.  It’s new and even a bit difficult and humbling to be on the receiving end of the blessings from fellow man.  But because of the loving people in our lives, we are so close to our new van’s price.  As I write this, we are only $3415 short.  Crazy. 

I know some of you cannot give monetarily.  And that’s fine!  No guilt.  Just pray for blessings for all those who did.  Pray for blessings for everyone who covers us in prayer daily.  Pray for blessings for Shelli and her family.  Pray for blessings for the family buying our van.  And pray for the family that lost their treasured daughter. 

And for those who still would like to contribute to this miracle … here’s the link.  http://www.gofundme.com/7aknhw

Or you can send a check.  Just let me know it’s coming and I’ll shoot you over the address. 

 

Apr 1, 2014

Bittersweet


Manny got a broviac (also called a central line or line, a type of semi-permanent IV) on February 7, 2012.  It has been through a lot.  (Understatement).  And I even explain more details here in the Blog entry called, “Bye Bye Broviac”.  http://destinyshousechurch.blogspot.com/2014/03/bye-bye-broviac.html

April 1, 2014 they will remove this broviac due to its instability. 

Plan A:  They will attempt to put a new one back in the same vein.  This might be tricky because it’s been in for 25 months.  Scar tissue and other things might complicate it.  (UPDATE:  Due to the ultrasound results, this is no longer a viable option.  The surgeon said the angle of the old one is too sharp of a turn to try that or it might rupture the vein.) 

Plan B: To put a new broviac in another vein in his chest.  Today they did an ultrasound to check patency and it appears there is still a viable alternative in his right chest.

Plan C: To put a new broviac in his leg.  This would be a last resort and quite frankly, a pain in the butt. 

In addition, we are having a nerve biopsy done.  A muscle biopsy is quite common but a nerve biopsy is relatively rare.  This is being done as a diagnostic test.  He has Merosin Deficient Congenital Muscular Dystrophy (LAMA2).  That account for his muscle weakness, why he can’t walk, etc.  But it does NOT account for his intestinal failure.  And it seems progressive (meaning getting worse with time).

An EMG (nerve conduction study) was done and had two results.  For LAMA2, the nerve relay signal is delayed.  The signal still arrives at the destination but slower.  (Think a car going 30 instead of the expected 60 mph.)  And his did this. 

What was unexpected was that there were reduced axions in the nerve bundle.  Every nerve is actually made up of lots of axions.  (Think about how there are lots of wires inside a cable for example.)  Say there should be 250 in a nerve bundle.  His had like 50.  This gives us a clue. 

When the doctor performed this test I was like, “Cool, it’s a hint.  What does it mean? And what causes this?” He told me he didn’t know.  I asked who would know and he said a neurologist.  I said, “Uh, aren’t YOU a neurologist?”  Yes.  But in true Manny fashion, this is RARE. 

The only way to know what type of neuropathy this is … a nerve biopsy.  Now if this was only to give us a name, I wouldn’t do it.  But it’s possible that with the name MIGHT be a treatment.  Or a way around it. 

And if this was only affecting his arms and legs, we wouldn’t pursue this answer.  But we think this is affecting his Autonomic Nerves as well.  That means the heart, lungs, kidneys, bladder, brain … important stuff.  And this biopsy could help “Stage” how far this has progressed. 

It will be several weeks before we get results.  Hoping we get answers though and that I’m not putting him through this for nothing. 

So around 11am EST, think of Manny.  Send up prayers for him, us, the whole surgery team.  For wisdom on what to do and how to do it.  For no complications.  For no issues with anesthesia.  For no complications in recovery.  For pain control.  For a quick discharge.  For an easy transition back to home.
The whole thing is bittersweet.  The central line lasted 25 months.  That's HUGE.  And I hate to see it go.  But it's time.  While it's technically still working, there are things we cannot do with it.  For example, we are supposed to do a "power flush" to help clear the line of "gunk" like clots that build up inside the catheter.  But that now breaks the line instantly.  So there's no way to clean it.  And this could cause MAJOR problems (like the line to rupture, the vein to rupture, infection, clots, etc). So it's time. 
Today is bittersweet because he has to do another surgery.  I hate putting him through it.  He's scared.  He freaks.  He's in pain.  He throws up.  He's miserable after.  It's just so pitiful. But it's necessary. 
Same with the nerve biopsy... pain inflicted.  But hopefully it's for a good cause.  But still, it's pain. 
But if we don't do the broviac replacement, he can't get his TPN and he can't go home.  So forward we push. 
But it's bittersweet.