Sunday, June 19, 2011

Go Dragons!







Cook took Natalie, Carter, Kiernan and I to the Dragon's game last night. The kids had so much fun and were so good! They cheered for the Dragons, ate some pretzels, and took turns driving the fire truck(my brother works at the fire station across from the stadium and was working last night). The weather was perfect while we were there and it started raining right after we left.


Saturday, June 4, 2011

Denied!

On April 20, I attended a state hearing appealing the second medicaid denial of her AAC device (the Vantage Lite communication device I've talked about in earlier posts). The hearing itself was an odd experience. It was all done over the phone as a teleconference. It was myself (and my mom), the Hearings Officer, 2 representatives from medicaid, and Natalie's former SLP Cheryl. I was not impressed with the Medicaid representatives - their attitude was on the nasty side. Cheryl did a GREAT job justifying why the Vantage Lite IS the most appropriate device for Natalie's communication needs.
Unfortunately, I received a letter in the mail on Thursday saying that the Hearing Officer upheld medicaid's denial decision. The reason? While Medicaid agreed that Natalie does need a communication device, they have determined that a "lower cost alternative" would meet her basic communication needs as they now stand. The problem is that according to her current and past SLP, Natalie would likely outgrow the device they are recommending within a year (if she hasn't already) and Medicaid only pays for a SGD (speech generating device) once every FIVE years! So she will have to use the one that they approve now until she is almost 10. Imagine how much her communication needs will change over that time period. I am so frustrated!
So, what are the options? I made some calls on Friday but have not heard back from several people I contacted so I am not positive yet. I'm pretty sure that I can appeal this denial and/or continue to submit documentation trying to get Medicaid to approve the Vantage Lite and I will probably do this. However, I hate so waste even more time that Natalie could be learning to communicate. She has an ipad with proloquo2go software on it but this is just not working that effectively for her due to access issues (touch screen sensitivity and motor skill problems make it frustrating for her to use the ipad very effectively right now). I can try to raise the money myself to just purchase the Vantage Lite but the total cost is $7,900 so that would not be an easy task!
Here's a video of Natalie's reaction when I told her that she would not be getting the Vantage Lite yet:




Ok, not really. This video is from February on a day when Natalie was not in a good mood. I think that it shows how important a communication device is for Natalie. She gets frustrated, like all 4 year olds do at times. The difference is that she cannot TELL anyone why she is sad/mad/hurt. It's frustrating for me but I can only imagine that it is 100x more frustrating for her to not have a "voice".



On a lighter note, she has been so funny lately with her letters. I can tell that she is so proud to be able to show me what she knows. She likes to get the "M" off the refrigerator and bring it to me. She does this at random times during the day, I think because when we practice her letters I always say "give me the M for Mommy".

Sunday, May 29, 2011

May pictures

Sporting her cute new Dora hat from Aunt Susan
Hanging out with Ronan
Reading Bear Snores On before bed
Little ipod/iphone junkies!
Mommy and her sweet girl

Friday, May 13, 2011

Natalie Knows Part II: Letters





I can't help but be amazed by all the knowledge that is inside Natalie's little head. I wonder how much more she knows that I don't realize - probably a ton! The first videos I took had the letters in order. I thought about it and wondered if that made it easier for her to pick the right one so as you can see in these videos I mixed them up just to prove that she could still get them right. As you can see, she sometimes has trouble with B and D, I think because they sound so much alike. I plan to show these video clips to her preschool teacher for next year so Natalie can't fool her. Just because she can't communicate with words doesn't mean she doesn't know what they all mean!

Saturday, April 30, 2011

Taking a walk

Natalie and I walked over to bop and grandma's house tonight. So glad for nice weather finally!

Saturday, April 23, 2011

Negative!

I called the neurologist's office yesterday and got a response in record time for them (under one hour). Natalie's EEG was negative! Whew! Even though I had feeling that it would be, it was still a relief to hear the nurse say those words. She will just have her regular annual neurology follow up with Dr Franz in June and hopefully no further seizures in the meantime (or ever again)!
More updates to come soon about the cool stuff Natalie has been learning lately and about an advocacy training series that I've been lucky to be a part of recently.