Braille Books!

Beckett received his first braille book the other day in the mail.  With his diagnosis of low vision, he qualified for Dolly Parton's free braille book program.  He will receive a new book in the mail every other month until he is 6.  How cool is that?  He LOVES to read Llama Llama Nighty Night every day with me, and we take his finger and are preparing him to learn Brailled by moving his finger along the braille words, as we read.  I feel like the best approach to dealing with Beckett's vision loss is early intervention...and this is a great start!

Beckett's Diagnosis

In September, we went to Little Rock, to have an ERG done on Beckett's eyes.  An ERG is like an EKG, but it is for the eyes.  The purpose of this test is to confirm his albinism diagnosis by ruling out degeneration.  Unfortunately, this test showed degeneration and wound up ruling out his albinism diagnosis.

Nick and I are feeling lost right now.  We feel like we learned everything we could about Albinism over the last 2 years, and then we find out that he doesn't even have albinism.  They aren't sure exactly what his diagnosis is at this point.  In fact, I can't even get the doctor in Little Rock to return my calls to answer my questions.  We have made an appointment with a specialist in Memphis, who has provided us with more information than the doctors in Little Rock have over the last couple of years.  We go to Memphis on November 14th and will be staying with my mom's cousin, Regina.

What we know for sure right now is:

*Beckett was misdiagnosed

*Beckett will most likely lose his vision

*Beckett is a strong willed, independent, determined child, who I know will not let this get in his way of living the best life he possibly can

*We have a strong support system to get us through this

*I am a strong willed, independent, determined mama, who will do anything to make sure my son has the best quality of life possible.

*Our support services (therapies) are out of this world!  Seriously!  Beckett has the most amazing therapists.  I will forever be grateful for the time, effort and love they put into the work they do with him each week/month.

*Beckett is happy, smart, and funny

*He is our rainbow baby.  I prayed for him.  I asked for him.  I begged for him.  I promised The Lord I would do whatever He wanted me to do in life, if He blessed me with a child, and that I would take on whatever needs that child had.  I could not be more thankful for the child he sent me, and I know these trials will only strengthen our family, and our faith.

Beckett after his ERG.  He REALLY wanted Cheetos

My favorite picture EVER of Beckett.  I look at this picture and my heart swells because of the joy this beautiful child brings to me.