I've made no secret about the surprise that came when we were told Monday morning that Ashley Kate would need to wear glasses. Thats exactly what it was...a surprise. I went into her eye appointment just to follow up with her surgeon since he hadn't seen Ash since last August just a few weeks before we landed back at the transplant center. I thought I would hear a new plan to attempt patching her stronger eye to strengthen her weaker one, but thats about all I expected. What we were told was a little shocking and now we are adjusting to life with a three year old who needs her glasses.
Ashley does need to wear her glasses all the time. If she is awake then her glasses need to be on her eyes. We were informed that her optic nerve in both eyes had suffered some type of damage. On a scale of 1to 4 her eyes are about a 2. Not healthy but not completely damaged. There is no way to repair the optic nerve. Many people go on to see 20/20 with damaged nerves once they have corrective lenses. What Ashley can and can't see is hard to know because she doesn't speak and can't tell us. When I asked what would have caused the damage I was told that extremely high or low blood pressures, lack of oxygen or cardiac arrest could have contributed. Ashley Kate has experienced all of those in last year to year and a half. Shocking? Yes. We were also told that her eyes, both of them, have a severe astigmatism and that is the main reason she needs to use her glasses. This is more than likely an inherited issue. Up until Monday mornings appointment the only issues we were aware of with Ash's eyes were the strabismus issues we have been addressing and correcting her entire life(due to her prematurity) with patching and surgery. We also discussed the need for another corrective surgery on her eye muscles to be done in the next few months. Ugh! It proved to be a very overwhelming appointment.
But... I would like to say how PROUD we are of her, and I know you are going to be just as proud. She has been amazing!!! Yesterday she wore those glasses for about 8 hours. I said 8! Today? Even longer. She is doing an amazing job! Oh, I have to be on my toes constantly because when I'm not looking she takes them off and throws them in less than 2.5 seconds, but I put them right back on and we go for another hour or so. I am in total shock that this child, our Ashley, ornery as she is, is cooperating with her glasses. Proud doesn't even do my feelings about it justice.
Her eyes have always been my very favorite part of her. You can see her spirit though them. They sparkle with joy when she is happy and they speak to me when she is sad. On the harder days in her life they have shared with me her pain and confusion and on the happier days of her life they have literally sung with joy. Its her eyes that I could stare into for hours on end and never grow tired. Her eyes are so much of who she is and peering at them through her tiny glasses does not change that for me.
Yesterday a stranger approached and said to me, "If that sweet baby has to wear those glasses then I am glad you chose the cutes one for her! Spare no expense!" That made me giggle because our eye doctor said not to spend much money on them because she would go through several, several pairs(we opted to buy a great warranty on them because we know her and all she is capable of). Our choices were pretty limited, but I think the ones we finally ended up with are fairly cute. I think she makes them cute. They look much better when her eyes, whether they be full of tears or full of joy, are behind them.
Her eyes are a gift. I know that they are. Although they may not be perfect, they are beautiful to this mommy and I am so very grateful she has them. If we have to endure patches, glasses, and surgeries in order to make them the very best they can be for her then so be it. There is nothing I would not do to give her the best life we possibly can.
Thank you so very much for your kind words. Your excitement over her glasses has made this whole experience fun. What began as a difficult week is ending as a wonderful one and much of that is a direct result of your encouragement and prayers. I am forever grateful for your love for our daughter. Thank you again. Goodnight and God bless. Trish
Tomorrow she will see her GI doctor. She has been struggling with quite a bit of bleeding in her diapers over the last week and we will discuss this issue and make a plan for how we should address it. I am hoping it is normal, although I fear it is not. Your prayers are appreciated.