My Story



"I thought I would have to teach my daughter about the world, turns out I have to teach the world about my daughter. They see a girl who cannot speak, I see a miracle that does not need words."

Welcome to our CaringBridge site. This was created to keep our family & friends updated on Harley.

Be sure to read the journal, view the photo gallery, and drop us a line in the guestbook.

Journal

Tuesday, June 30, 2009 11:09 PM, CDT


I am getting backed up on updating her journal once again.

Harley is 3 years old now !!!! I can not believe how much she is growing. It makes me sad. Before I know it she will be 5 then 10 and so on. We had a birthday party for her her at the new house. We had lots of family and friends. It was a wonderful time and of course she recieved many gifts.I am very very thankful for these past 3 years and look forward to many more.

Harley will be starting Outpatient therapy now that she is 3. We have already done her evaluation we are just waiting on getting a scheduled worked out. She will be getting PT, OT, and Speech therapy. She has never done speech before so i look forward to working with her on that. With the move and the Make A Wish Trip, I slacked off a little on working with her but we are starting up again.

She is doing great. The only problem we are still dealing with is her seizures(they are better) and her reflux. I am trying diffrent things to thicken up her formula to try to prevent her from spitting up.  We are using Thick It right now but it does seem to make her gassy.

On another note, we just found out from SSI that they have been paying Harley too much over the past 2 yrears( never more than about 60 a month) and we now have to pay back $2800 to SSI. They are also taking her SSI away starting July 1st and since they are doing that she will now longer qualify for Medicaid. This is an on going problem that we have been dealing with. She has been on a waiting list for 2 years for the MDCP program and still has 7121 people ahead of her. So it is a frustrating mess that i am sure tons of parents of special needs children deal with. 

But, she is happy and healthy and I could not ask for more.
 


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E-MAIL AUTHOR

harley61706@yahoo.com

HOSPITAL INFORMATION

Childrens Medical Center
Stemmons Freeway
Dallas, TX