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Saturday, February 11, 2012


We are counting down the WEEKS I can not wait to get the call from either Iowa or Philly. My bags are packed. Were ready to go.

7 comments:

  1. I hope everything works out for you. We are in Florida as well and going through some similar times with our son. He has a rare eye disorder and is legally blind. It is a daily struggle but it sounds like you have a plan. Good luck!

    Eric

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  2. Thanks Eric,
    We found an amazing Doctor at UF it's a go drive but worth every mile. Her name is Dr.Kay. She has helped us through everything. I have a lot of information on doctors, schools etc. If you would ever like me to email it all to you?
    Best of luck with your son, Do you know if anything can be done yet?

    Sarah

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  3. I would love any info - 97noremac@gmail.com

    We have gotten glaucoma surgery three times, cataract surgery, and recently a failed cornea transplant for our son. We are in a bad place at this time and are anxious for surgery next week at Bascom Palmer. We are not sure if they will be able to do anything next week but his eye needs to be looked at asap.

    Eric

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  4. Hey Eric Here is what Dr.Kay said. I had sent her your comments. Below is her response and her contact info. Or you can also write back on the blog or via email and I can get that to her too.

    Poor guy - is he talking about his child, or is he the patient? It sounds like he needs a corneal transplant - and is going to be seen at Bascom Palmer (eye hospital in Miami - incredibly good place with very good cornea specialists....) so I am not sure I would be able to help him much more. Do you know what the diagnosis is? If there is some retinal issue I could talk to him about that - but it sounds like glaucoma/cornea issues and he couldn't find a better place than Bascom Palmer for last-resort management of glaucoma/cornea problems.



    But if there is anything that I can do to help let me know.



    ===========================
    Christine Kay, M.D.
    Assistant Professor
    Vitreoretinal Surgery
    Department of Ophthalmology
    1600 SW Archer Road
    Gainesville, FL 32610
    (352) 265-7080 (phone)
    (352) 265-7081 (fax)

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  5. Thanks for contacting her! He might have some retina issues going on, we will find out next week. He has Peter's Anomaly and it is pretty severe.

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    Replies
    1. Hi Eric,
      Sounds like you are having a very tough walk with this. In addition to finding good doctors, I hope you know there are nonmedical supports for both your son and your family. Help to understand the impacts, and help to support your son's best development. In many areas, that is through Lighthouse programs. If you would like help accessing the right support program in your area, I'd be glad to help. In the meantime, best wishes as you travel this path.

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  6. Sarah, These pictures are too cute! Of course Creed can't take a bad one. On to Iowa!

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