Out situation as of May 1st.
Another busy week for us. We went out to support AIDS/HIV treatment and awareness with friends by simply eating. (My favorite!) 
They gave us cool stickers for it too, as you can see from the picture above. We also went to friends’ houses and played with toys, took Lali to book club, watched Lali’s first experience with french fries, and we colored A LOT! The Park Gallery even put Laelia’s artwork on display. (We are selling it for $400,000,000,000,000.00 give or take a few zeros, if anyone is interested. ) But I think the best thing that happened for Lali this week was PT on Friday.
It was probably our best visit to physical therapy in the history of ever! And I really didn’t think it would be. We once again failed at the stander because Laelia’s body is not quite stretched out enough to benefit from one. Usually this would totally bum us out (almost did), but then our PT told us that she believed Laelia could be transitioning from a lying down position to a sitting up position soon! Now we have homework to do with her that we’re excited about! I keep imagining her learning to sit up by herself because we did specific exercises with her. You know, as opposed to waiting for her to figure it out on her own. It makes me feel a little more empowered; whereas most of the time her amyoplasia (lack of muscles) is so much bigger than I am. I guess we were just given hope and encouragement at this latest session which is so helpful.
Speaking of PT, the Regional Center, who helps us with Lali’s therapy (you know, besides Grandma ), recently announced that arthrogryposis is now a qualifying condition for CCS’s therapy program. So the Regional Center will no longer be helping us out with PT or OT at Children’s Hospital. ~ Seriously. ~ We are unwilling to lose Jill (our OT at Children’s) because CCS outsources to her regularly anyway! (Making CCS inferior in my book.) Jill is the best hand specialist in San Diego and works with arthrogryposis a lot. In fact I know more AMC kids through Jill than anything. And CCS is unwilling for us to transfer just PT over to them. Oh and our insurance is unwilling to pay for anything if we do anything with CCS. (sigh)
So bottom line: Pretty much Regional Center is taking an out so they don’t have to help us financially anymore. And they’re dumping us where all the welfare children end up. I was near tears because my last meeting with a CCS representative was not pleasant. Their attitude was mostly, “Hey this is free! So, (parents), sit down and shut up!” Charley says we’ll keep Lali in the program she’s in now-despite the rise in costs–because that’s what we both know is best for her. Although we are cutting back on our trips to save money. But with Charley’s job situation the way it is (his place of work was just sold and we’re wary of layoffs), I’m worried. But no one is really loving this currant economy anyway, so I’m just one more complainer. But I’m not on welfare, I’m not irresponsible, I’m not asking for a bailout! I just have a disabled child! And this isn’t some beauty treatment I’m wanting for her, it’s therapy to help her with basic functioning!!! And I’m unhappy because this just got harder… and more expensive… and generated more paperwork… ugh.
:-/
May 3rd, 2009 at 6:57 am
Hi from an Alta (not EI) Service Coordinator,
I’m so sorry to hear about the edict from you Regional Center. I was just at an “all staff” meeting last week where our Exec. Director gave us some hints of what is to come. Dept. of Dev. Services (state agency) needs to cut $100 from its budget–they fund the Regional Centers. We (service Coords) received an email with all the proposed cuts to save this gand amount of money. It will cut services to our consumers both in EI and over 3 in many areas and families will be asked to pay a portion of respite for the EI program too.
It all boils down to the economy–ugh. I’ve had contact with some CCS PTs here, probably not enough and certainly not in the same way you do. I remember trying to get a client (teen with involved CP) something that would get her into the tub and mom wouldn’t have to use her back to get the 100 plus pound girl into it. I think they “tried” but whatever they came up with wasn’t really effective.
I’ll keep you and Laelia in prayer. She’s progressed so much and will continue with therapy and support. God wants her to have the best!
Blessings,
Robin
May 8th, 2009 at 6:15 pm
We love you guys and are praying for you! It was absolutely wonderful to see you in March. Some of my favorite pics from the rehearsal day are of Laelia! She’s a wonderful little girl… I am so glad to have met her at last!