Time to move forward

Moving forward to the “Next Step”

  Life on the road for rehabilitation is not easy.  It’s funny how most people see
it as we are on some

kind of “full-time vacation”.  That could not be further from the truth actually.  I suppose if you have never had a special needs child or worked with a special needs child you couldn’t possibly understand

what is involved.

We have not had an actual vacation in over twelve years. No time off.

Someone please send us on a vacation- I’m tired of being an adult.

Most people associate someone staying in a RV with being retired or on vacation. In our case neither one stands true.

In fact it can be a lot more challenging.
This is what works for our daughter and to fit her needs.  We as a family have made many sacrifices. We will continue to make sacrifices when we need to in order to get this little girl better.
I really can’t expect people to understand this and thats ok.  You also can’t expect to understand something if you aren’t familiar.
Its time for therapy again and once again we are challenged with work, therapy, travel, repairs and costs associated with all of this.
Our daughters care has been highly successful with the therapies and treatments that we have done with her.  There are still many things we are working on.  There is a much larger puzzle.  Therapy, treatments, her daily care, education, daily life skills, and inclusion into our society are all some of the things we are faced with on a daily basis.
We will be trying a new therapy in September this year and are very excited about it.  In the
meantime we have lab work and a Dr. appt. with Dr. Jerry to get out of the way first.
What this involves is finding a “clean lab” not a hospital to get labs and a trip to either Florida or California to see the Doc.
( This expense involves travel – fuel for coach and accessible van, a campground to park while in Florida or California for Dr. appt. and fuel to the next therapy)
We start a new therapy in September. This is exciting. I actually researched conductive education early on. In 2010 there was only one facility in Miami which wasn’t financially possible at the time.
In 2010 at this point we had already lost our house. Not because of mismanaged funds but health insurance doesn’t make house payments or make up for time off from work missed to keep our child alive.
I personally would rather have my children alive and well than to have a house. Hence, this is why we are where we are. Yes we would all love to have a home to come to when we are not doing therapy and treatments. But tell me, how many of you can afford the upkeep and expenses of 2 homes? I’ll bet not very many. I know we can’t. Im just being realistic. It isn’t an option.
 ** Septembers therapy is in Texas. We will need fuel for coach and van as well as a campground while we are there for the month doing therapy. We need to be near the Lewisville, Grapevine or Carrolton, Denton areas.  
There are not a lot of campgrounds in North Texas where we are going. It is also sometimes difficult to find a campground that can fit all of our equipment. Im sure people think we are probably rock stars but we are not.
We have a 2000 LX Bluebird wander lodge motor coach http://beachnest.net  that we have been blessed to use.  We also have a handicap accessible van and a 10 ft cargo trailer that hold rehabilitation equipment and a freezer that contains her restricted meal plans and food. We have close to 80 feet of equipment or can side by side 45 feet.
We had hoped to then head to the west coast to do Physiotherapy at Polfit Wellness http://www.polfit.com/ourstory.html  if you look on the Testimonials page there is our Abigail.  We had planned to do this in October.  I just don’t see this right now. It may be financially impossible.
Hopefully one day I can devote more time to this blog and to our websites so that I can share photos and videos with you. Polfit therapy in Southern California http://www.polfit.com/ourstory.html
in conjunction with
Hyperbaric oxygen treatments also in Southern California http://cfnmedicine.com/hyperbaric-oxygen-therapy/ and the blessing of God helped Abigail to take her first steps.
I was going to post a photo of Abi doing hyperbaric therapy but with crashing my computer three times I have photos scattered everywhere in external drives. This is also why our web site is so far behind in being rebuilt.
None of these therapies or treatments is covered for our diagnosis on any insurance .  As you can tell this is a huge expense.
In the near future I will put everything together on Beachnest.net so it is accessible by one page.
We do have a special needs trust that is set up for Abigail’s medical expenses but it does not cover the amount of therapy that is needed.  We have to budget the funds we have and do the very minimum of therapy.  Otherwise we will run out of funds for her lifetime.
We have done fundraising and have a page set up on Coles pages to take donations.  http://www.colespages.org/AbigailesStory/pages/visit  We appreciate all donations. There is honestly no donation that is too small ever.  Coles pages does have a fee to cover their processing so that they can send the families a check to cover costs. Many people complain about this fee but in my opinion Coles pages has expenses as well and it does cost money to be able to run a non profit organization.
We have had to cancel the past 2 years Physiotherapy due to unforeseen circumstances and because of work and not being able to take time off.  We don’t want to cancel again this year as well. It is a lot less expensive to stay in Southern California during the winter months as opposed to summer. So many kids come during the summer break that we could not get in during that time if we needed to. We have seen tremendous progress from these therapies.
We are wrapping things up here and are praying for extra work in Texas while doing therapy, funds to get coach in order ( air conditioner that went out, batteries (6 of them) and our awning broke). We will also be praying for a place to stay in Texas while we do therapy. We are also praying for Abi to do well with this new therapy and for us to see progress. Progress is – not everyone sees the same results).
I honestly will just be thankful to leave this place. I love the state it is my home state. I am just ready to move forward and to get this little girl working again and on the road to recovery.
blessings to you all,
Paris xoxo