Monday, August 29, 2011

the dreaded eye patch

Amelia is supposed to be wearing an eye patch over her right eye for at least one hour a day to strengthen her left eye because it is weaker.  She is very near sighted but appears to have good vision in her right eye with glasses.  Her left eye has a lot more problems largely because most of that lid was missing when she was born.  She has some jittering in that eye and she developed a corneal ulcer when she was about 3 months old.  The ulcer healed fairly quickly but has left small indentation on her eye.  Because of this she has some depth perception issues.  Whenever she needs to walk over different types of floor (ie carpet to tile or tile to wood) or even has to cross a crack in the concrete, she puts her hands down first to see if it is uneven.  She is definitely learning to compensate for this problem and has no problem navigating around places she is familiar with.    The fact that she is missing the balance nerves in both ears makes walking even more difficult but she is improving daily.  As I said before, she is a very determined little girl and is not letting anything slow her down :-).

Now, back to the eye patch......  As you can imagine, she is not a big fan of the eye patch.  We have to entertain her the entire time she is wearing it just to get her to keep it on.  She is actually getting better with it on so I am hoping that means that her vision in her left eye is getting better :-). 

Siena joining in the fun
Mama too
On the coffee table? Whatever works!
Now we're just getting silly :)
Horse's turn next

Tuesday, August 23, 2011

We made a decision...finally!

After much agonizing, tons of research, countless doctor consultations, hearing evaluations, prayers, hearing aids, plus a few MRIs and CT scans, we have finally decided to go forward with taking Amelia to Italy to receive an Auditory Brainstem Implant (ABI). This was not an easy decision but we feel it is the right thing to do for Amelia. I think I have been leaning in this direction the whole time but everything seemed so unreal. I sometimes still think it is unreal to have a daughter born with so many difficulties. Our family has led a relatively normal life with many of the usual ups and downs but nothing as serious as what Amelia has been through and will go through. Yet she has been such a blessing to our family and has opened so many new doors for us to explore as well as introduced us to so many amazing people. Amelia is truly unaffected by all of her obstacles and gets so much joy out of life. She is also incredibly strong and determined. I have learned so much from her already and she has made me a much stronger mom for both her and Siena. It also seemed so unreal to imagine that I would be taking my daughter to Italy for a medical procedure that she is not able to get in the US. I do believe it will eventually be approved by the FDA but we don't have the time to wait. The earlier she gets the implant, the greater her success will be at comprehending sound. What is real is our love for Amelia and our willingness to do whatever it takes to provide her every opportunity available in life.

We cannot do this without everyone's help. As my mom stated in a previous post, we will need to raise about $100,000 to cover the cost of the procedure as well as travel expenses. We will need to be in Italy for about 6 weeks because the implant cannot be activated until a few weeks after it is put in place and she will require close monitoring after that. Because the implant is not FDA approved, our insurance will not be helping us at all. We would like to be able to schedule the ABI within the next 6 months.

There is a special fund set up for Amelia which is open to receive donations. We would appreciate any amount that you can give toward the cost of Amelia's surgery. We realize that this is a lot of money to be raised, and that each one of you has your own needs within your family. Please give whatever amount you feel comfortable contributing. No amount is too small, or too big, and you are not obligated or expected to give, but we are asking you to donate if you can.

Donations can be made to the following:

Mission Federal Credit Union
C/O Amelia Heston Benefit Account
PO BOX 919023
San Diego, CA 92191-9023

Donations can be made in person or by check through the mail. I've also set up a paypal button on this blog. There is no additional fee for you to use paypal however they will charge us a small percentage of each donation.

Thank you everyone for all of your love and support.  Please continue to keep Amelia and our family in your thoughts and prayers.

Thursday, August 18, 2011