I have a friend Tony Tellez who asked me to post this for him. He said you can be skeptical, but they are providing you with opportunities to meet Reiley and see just how she will touch YOUR life like she has other people. Like me. That KISS melted me. Reiley gave him a big kiss and a hug the other day when she met him for the first time.

Again, she has two website, one is strictly about her medical fund,golf tourney, a you tube tribute to her, and now I blog there too. www.reileylakemedicalfund.weebly.com

The other I have had since I think August or September of last year... I was keeping a word document until another special needs mom told me about this site.

www.caringbridge.org/visit/reileylake

People all the time are in the news looking for help, seeking answers, asking their community can you help me... I don't see how my posts are any different than that. I want the best life for my child, I want the best care for her, I want her brothers and sister to not lose their sibling, I don't want to lose a child... is that so wrong?

So I just posted today's surgical procedure on her websites if you are curious on how it went.

Blog page of the www.reileylakemedicalfund.weebly.com  or her CB site on the journal update for today www.caringbridge.org/visit/reileylake . I'm going to lay down and try and catch some ZZZzzzz.

 LOL......

Don't flatter yourself....it just enhances your lack of compassion and sincerity...

Go play somewhere else....

We have a date for Ohio to see the motility specialist. July 21st - July 25th. You can find out more by going to either of her websites. Thanks!!

I haven't read all your posts (sorry I'm rarely on here) but I caught a line about muscle bx and mitochondrial disease. I have a 5 yr old son with mito and a chromosome deletion at 2q37.3.

As I was browsing through I saw that you are trying to get to see some out of state specialists.  We took our son to the Cleveland Clinic to see Dr. Bruce Cohen (world renowned specialist in mito).  We were able to get Southwest airlines to donate tickets and there is a Ronald McDonald house on the campus that offers lodging. 

What you wrote about having a child who "looks normal" but is a train wreck internally/developmentally hit so close to home.  I'd love to chat with you, I think we may be able to offer each other some support.  I've been down this awful road of not knowing, then the gut wrenching road of knowing.  I can probably offer you some advice that may save you some valuable time and heartache. (I sent you an email through this website with my contact info). 

In any case, best of luck!

I have posted some recent updates about Reiley on her caringbridge site. A friend Mallardisme contacted KTAR and you can view a story about her as well on their website.

Local news Radio Station KTAR 92.3 Darrell Ankarlo - Ankarlo in the mornings and Rob Hunter producer of the show, have put this story on their website about Reiley helping us with promoting her Golf Tournament and raising funds for her medical care. 

 http://ktar.net/blogs/dankarlo/2008/05/13/ankarlo-kares-2-year-old-reiley-lake/

Sorry the above link doesn't work for the KTAR blog.. If you just go to Ankarlo blog spots you will see her story. We will be on the air on May 28th at 1135am thank you to mallardisme for contacting them.

Thank you to RuthAnne for doing the story "Heathcare sevices still lag behind population growth" and Jake Johnson for taking such cute photos. Also to Howard WaGGner for his cute photo at the top of the story.

I hope that the story will bring more awarness to the lagging healthcare services and special services needed for families with special needs children, here in Maricopa. It is important that the city think about all the families here with special needs children who need services, NEED support groups right here in our city, as well as sibshops (workshops for children who have special needs siblings).

This is a very big hole that needs to be corrected - availability of services, the need for DES, WIC, AHCCCS and DDD to be right here in Maricopa Monday - Friday.

I found it interesting the spokesperson for the County mentioned the mobile unit they have in Maricopa twice a week. However what wasn't mentioned is the mobile location is at the Baptist Church South of the tracks. People standing outside in the hot sun waiting for these workers to show up who I was told are there Tuesdays and Thursdays from 9am to noon. The person I had my phone interview with to renew our state services told me to show up at 930am. The workers didn't arrive until almost 10am. Went inside and locked the door until they were set up. Then finally opened the door about 10-15 minutes later. And we all crammed into a tiny room no bigger than my den, and then Ifound out these hours were set up for people with appointments. So we were made to stand around even longer while all we needed to have done was be finger printed and were told to just go on in and get it done and we would be done.

Anyway, my point is, this mobile location is not a fix, it's not even a start. We need services available to the citizens of Maricopa in Maricopa. In a building were they can go inside and out of the elements. Were they have people available for appointmens only and people who need assistance in getting started or dropping off paperwork, or just needed to get fingerprinted. We need support groups set up and sibshops. Councilmen and women I hope you hear the cries of the special needs community and the community who needs state assistance. Thank you!