Tuesday, August 31, 2010

Revive Hope

I recently discovered an amazing blog that chronicles the lives of Organ/Tissue Donors and Recipients. Please check it out and help spread the word about how important it is to "Live Life and then Give Life"


My Mantra...

Monday, August 30, 2010

Cautiously Using The Word "Stable"

For almost 3 years we have been on this insane roller coaster, never knowing if we would ever get a chance to slow down and enjoy watching our daughter be a little girl. Would her childhood be dominated by long car rides, doctors waiting rooms and hospital visits? Or would she get a chance to just be a "normal" child. To be completely honest, in the days and weeks after her birth, I envisioned Emily as a blind child who struggled to live with her disability...Wow was I wrong!

Our little girl is now almost 3 years old and she can do just about anything any normal sighted child can do. She has some limitations, and hesitates when she isn't sure about something, but 95% of the time she is a normal child. She CAN kick a ball around in the yard, play in the sandbox, ride a scooter, jump into a swimming pool, chase seagulls on the beach, swing on a swing, play miniature golf, ride a carousel, color with crayons and chalk (and know the colors she is using) climb up and down steps without help, play with dolls, watch TV, look at books and name the pictures she sees, tell the difference between a panda bear and a brown bear...the list goes on and on. She can do ALL of those things!

She loves watching fish swim around in a fish tank, building with LEGO's and giving our kitty cat hugs. She knows the difference between orange and pink...blue and purple...red and yellow. EMILY CAN SEE! ! ! She is NOT blind anymore! The quality of her vision may not be "perfect" but neither is mine. I wear contacts, my husband does too - who knows...she may see better than either one of us does without glasses or contacts. She is simply amazing!

At our last appointments with all her doctors, they were all extremely happy with how she is doing. Her corneas are very clear (with the exception of the scarring in the center of her left eye). Dr. Zaidman reduced the Durezol (steroid drops) to 3 times a day in the Right eye and once a day in the left. (It had previously been 8 times per day in each eye at one point). She is still on 3 different Glaucoma meds, but her pressure has been within a good range consistently for the past few months and Dr. Kane is considering eliminating one of them. Dr. Morgan was so impressed with her vision at her visit a couple weeks ago. She is still farsighted, but her vision at a close range doesn't seem to be interfering with her daily life, so the need for glasses is questionable. They could help make her see things that are close less blurry, but it may not be significant at this point. We are holding off for a little while and will wait to see how things go over the next few months. No glasses and less eye drops! THAT is a wonderful thing!

Because of the decrease in meds and good range for her eye pressure, I've cautiously began to describe her as "Stable" when someone asks me how she is doing. Anything is possible, so I can't really subscribe to the idea that for the long term she is ok, but for the past few months and at this very moment...she is as stable as she can possibly be. That roller coaster has slowed down, our doctors visits have been decreased from once a week (right after the cornea transplants) to every 7-8 weeks. And when she goes back at the end of September, the appointments could be spread out even longer.

She is doing well, and I can't ask for more than that. Her eye drop schedule is just routine now...its not as consuming as it once was. Its just part of our daily life. She gets 7 different meds at various times of day, but there is flexibility now. I am not looking at the clock and saying "oh my god, I didn't give her drops at 9:47 like I needed to". Giving them at 10 or 11:00 is fine. Two years ago I never envisioned I would feel that way.

Living By Hope has worked for us so far...