Monday, March 30, 2009

My husband does not like the saying, "the squeaky wheel gets the grease..." He is much too concerned with proper diplomacy (not that I am saying any thing is wrong with diplomacy) but as it seems to be when dealing with the dozens of therapists, specialists and doctors who attend to my babies I have to be a "squeaky wheel." I make no apologies. My boys deserve the absolute best and I will fight so they get it.

I have been frustrated (but unable to even think about this past week) with the vision services that we pursued through the school district. Many of you know through prior postings that the once a week sessions with the LA group, Junior League of the Blind, where useless and their therapists were young gals with day care experience who they stuck in libraries and expected all the vast knowledge of vision care to somehow absorb in to their very inexperienced little bodies. Because of this, I complained to our Regional Center case manager. She put us in touch with the VI specialist through the school district (yes, just ONE for 100 visually impaired children...this makes me ill to even type that). He is a wonderful man whose daughter is also a 24 weeker and has been blind since birth.

He came a month ago to assess Jonah. He offered a few new tips to utilize when working with Jonah, i.e. focus on communication in all situations to help Jonah interpret his environment, continue working with toys that have light or can reflect light easily. He said he would probably see us once a month. What?

I remember that day calling our same case worker and saying, "Wait a minute...not much at all can be accomplished with a once a month visit." This past month we awaited the final paperwork and assessment from George so we could sign off on starting the services. Well a week and a half ago when Noah first went in to the hospital, my father was given the paperwork by our infant specialist from Richardson Center after she finished working with Jonah.

My father told me I was going to be upset because the paperwork listed that George would be making a monthly visit for 20 minutes, WHAT? WHAT?

So, finally, today...I called our case manager (bless the heart of Freddie Opine...she has been a true champion and advocate for my boys and taken dozens of phone calls from me concerned with services) and she agreed it was time for me to first call George and then the school district.

I first called the specialist, George, and left a message asking that he contact me regarding the monthly visit and limited amount of time that would be spent with Jonah. I reminded him that Jonah has little if no vision and falls in the "severe" category and so I planned to push for more regular visits but first wanted to contact him.

Wouldn't you know it? Within half an hour I received a phone call from George and he said, with much sympathy, "I know where you are coming from and how concerned you are. I actually live close to you and there is no reason I cannot make the time to come once a week to work with Jonah." Now, that still may only be half an hour but we will take it!!! Talk about an improvement!!!!

I am thrilled that hard work has paid off.

I also have not posted about my phone calls to Duke University. After pestering them for about a week regarding stem cell treatments, they finally called to say that Jonah did not qualify for any current, ongoing treatment programs but that they would keep us in a database for future contact.

I am not giving up yet. One of the nurses that worked with the boys up at Memorial formally worked at UCLA and she suggested I contact their very established CP foundation and see if there is anything at all they could do for stem cell treatments. I had to laugh at her phrasing, "UCLA loves unique cases like Jonah and he would provide a great opportunity for research." Ok, not exactly sensitive but she does have a point.

So, I guess my next mission is UCLA. I will keep you posted.


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