Friday, March 12, 2010


Hey ladies, I haven't posted in a long time on this blog.  Our focus has been shifted to my husband for the last few months, he's been battling small bowel cancer.  Things are looking a little on the up and up in that department and I've been able to shift more of my attention back on my girls medical/therapeutic needs.

Reagan, my 2.5 year old, is doing really well.  Her microcephaly is still present but it seems the main thing it has effected is her balance... which could also be because of the mild CP.  At any rate, right at this moment we are very happy with her progress.  She's eating, saying 2 word sentences, walking, and identifying objects.  Hurray.  We know success is volatile with kids, but we're very happy she's in a good place right now -especially with our extenuating family circumstances.

Jaylee, my 7 year old, is the one I need your advice about.  They have retested her hearing and she qualifies for a personal FM system, which I think will be of immense help.  I've joined an ADHD support group here in Atlanta and have been getting great ideas for positive reenforcement, organization skills, and daily functionality (if any of you are interested I'd be happy to post).  However, the common thread that has occured at these meetings is the difference between ADHD and LD's.  OR the fact that they can both exists and exacerbate the other.  Jaylee is struggling in school, we know she has a cognitive delay, but I'm concerned that that's not the only issue.  She eventually learns the subject, albiet it takes her 3 months, she eventually grasps.  However, that 3 month gap is really effecting her confidence and such at school.  She also struggles with social cues.  Sooo.... we're doing our best to read about ADHD and social helps, we're also wanting to get her tested for any LD's. We've been working with the school system regarding her cognitive delay and it's just getting nowhere.

There is a wonderful program in Atlanta called "Beyond Words."  It works with the kids individually and in group therapy to find good coping strategies, teaches them social cues, and helps us in our daily parenting to reenforce those coping mechanisms.  Plus, it's legal health documents that will help us with our fight to get classroom modifications at school.

Here's the kicker.  They don't take insurance and just the evaluation alone is $560.  That's not including therapy or family sessions or anything on a routine basis.  They have a fantastic summer day camp for ADHD/Autistic/ADD/PDD but for every two weeks it's $860.  Ouch.

So, my fellow Tulip Moms, do you know of any financial grants out there that we could apply for? Any lottery numbers you feel good about? (haha)  Both my husband and I feel like Jaylee (and by extension, our family) would greatly benefit.  Do you know of any savvy ways to talk to the programs about financial plans? Or proposing payments?  I haven't hit the "we don't take insurance" or the "insurance doesn't cover this" bump like a lot of you have in the past... this is our first time..... help?!?!


Annette Monts Falls said...

These are difficult issues and vary so widely state to state, sometimes county to county. I read about a new foundation that is doing some grants...I'll share the info because one never knows how/where connections may lead. On Facebook there is a fan page @Danielle's Foundation, I believe it is. You are welcome to go to my FB profile & find the link...there are growing numbers of families linking up in amazing ways through facebook. I'm drawing blank on the names just now but all can be found at my page. Also I did start a fan page for Clay when he was fighting for his life last summer that you are very welcome to peek in on if you like @Clayton Alexander Falls. Hang in there. Things can overwhelm us but you will find guidance and support through God's directing hands. I'll keep your family in my prayers~blessings & hugs

hayngrl101 said...

Can you check with your insurance company and see if they will reimburse you for services?

I've heard of organizations applying for grants to subsidize our out of pocket expenses, but none where we can apply for our kids... :(

Susan said...

So sorry to hear about your husband. I don't know anything about insurance stuff, but I'll pray my guts out for you!

Lori said...

thanks ladies.