who doesn't love a FREE book?!

I belong to multiple yahoo groups.

A couple for (crazy) homeschool mommies. But mostly pertaining to Trevy. And his medical challenges.

Shortly after his 3T MRI revealed (mild) bi-lateral PVL I joined one for parents of children with the same condition. I've mentioned before that PVL is a brain injury that indicates there has been a lack of oxygen to the brain...at some point either pre-birth or shortly after birth. It's most often a preemie thing. Which Trevy was not. In fact...all three of my kiddos had to be given the Pitocin boot to force them out! I must have a comfy womb. It can also result from a neonatal stroke. Dr. Neuro has speculated this as a possiblity for Trevy. PVL is almost always linked to Cerebral Palsy. Yet...mobility has always been one of Trevy's gifted areas. His right side has been noted (by therapists...teachers...doctors...friends...ME...) to have a mild (neurological) delay (he walks with a slight limp and his right hand has always been a bit slower to the draw). But only one doctor has ever documented a case of mild CP. Sadly...he also documented that Trevy would never be a surgical candidate. A bit of a credibility crisis.


But here is where I must insert that I have ALWAYS believed Trevy has mild CP.


I was going somewhere with this. And it was SO not where I've already been!

Sorry...it's a rabbit trail kinda day I guess.

So I'm not really active on my PVL forum. Mostly because many of the children are much more affected than Trevy. And only one or two of them had Infantile Spasms.

But I still read the posts from time to time.

Especially the posts offering free literature.

With a title like this...

Getting the Therapy, Benefits, and Resources Your Child Needs
(a guide for parents of children with Cerebral Palsy and Brain Injury)

Compiled and donated by an attorney. And offered by a wonderful little foundation ~ Danielle's Foundation. I immediately submitted my request. And was on the phone with a sweet voiced parent advocate a handful of days later. How refreshing was she! So many times foundation is just a less slimy sounding name for money grubbing disengaged machine. IMO anyway. But not once was I asked for my credit card information. Nor if I would consider a montly or one time donation. Notta. Nothing. It was all about listening to my stumbled through Trevy story and how they could serve me. Serve Trevy. I fully anticipated some sort of donation form packaged together with my free book which arrived in the mail today. Nope. Not there either. Just the book with a beautiful cover. And a letter again emphasizing their desire to help support our family. Refreshing I tell you! At this point they could send me a dozen donation forms daily...and I'd still be smitten!

If you're the parent or care-giver of a child with CP and/or brain injury...

I highly recommend sifting through their website and applying for your own free book!


Sarah said...

Thanks so much for posting this. Both of my girls have PVL and IS, I hope it helps us in some way.

happy's mommy said...

Sarah...I skimmed through and there was some really great ideas! One in particular...is swapping treatments. So if the girls qualify for nursing care...but you don't use nursing care...and they don't qualify for something else (let's say hippotherapy) and you do want them to have hippotherapy...the premise is working with your insurance to agree not to use the nursing care and instead have them approve the hippotherapy.

And other good ideas like that.


Anonymous said...

I've been to Danielle's Foundation site before. I have a couple of problems with it - totally unrelated to the name.

The premise of the foundation is that they want other parents to know all their options because (presumably) their child died because they did not know all their options. Unless I misunderstood. Because then I was confused as to whether their child was given every option and did not get better or survive.

I strongly disagree with the representation that all treatments should be given equal consideration. Like it or not, hooksters exist who will gladly prey on the emotions of parents looking for a cure for their child. Barbara

happy's mommy said...

I didn't do a ton of digging on the internet. It could be their mission has shifted? But to me it seemed like the mission online (again...I didn't spend a ton of time) and the mission with the parent consultant (we spent about an hour on the phone) I felt that the mission was providing support because Danielle's mom felt very alone through her journey. And to provide assistance in understanding the complicated letter of the law...because again...she felt alone. And I can't disagree...it's very overwhelming trying to figure out who covers what...what should he qualify for...why do I have to fight about simple things...etc etc...


Anonymous said...

I just did a quick re-visit, too, danielle. I agree that the support portion of their site is emphasized and do not discount support as a valid mission for parents of children who are medically complicated.

Providing support that implies all treatments are equal and effective is a disservice.

There are established support organizations like Easter Seals, United Cerebral Palsy, and March of Dimes that provide similar purposes.

I'm grateful, as your friend, that you felt some support from DF, but if I don't voice my objections I feel complicit in what they promote. Barbara

happy's mommy said...

Your principled nature is one of my favorite things about you. :)