another "A" word

*I have pictures for this and will update when I have them on the computer.*

Yesterday Emory went for her eye exam to test her optic nerve and look a bit further into her eye, the reason for this test is because her opthamalogist is concerned with how much she squints because her nystagmous shouldn't cause it. He told me at her appointment a month ago that the test might not give us any answers and we'll have to take it one step at a time.

At 930 am I called to get Emory's time for the exam and they told me one and to be there at 1130 and to not feed Emory anything but clear liquids until 10 and after that she couldn't have anything. Awesome since she hasn't eaten since 10 the night before she's starving and asking me for food and all I have to offer is apple juice. :( As I'm getting her apple juice ready they call me back and ask if she's eaten. I say "no". The lady then says "okay great don't feed her anything because we want to see her earlier. We want you here at 10 and her exam will be at 1130." I tell them we may be a little late because of the roads being bad from the storm last night when in reality we weren't even ready for the day yet. So I hurried and got showered and dressed and off we went on snowy roads in 10 degree temperatures up to Primary Children's for her exam.

We get there about 1030 and check-in in the same day surgery department. We wait a few minutes and then are taken back to a room. They get vitals on Emory and she screams at the nurse. She also put her i.d. bracelet on her ankle and Emory hated it. She then leaves us to dress Emory in cute hospital pjs that are 3 sizes too big for petite little Em. The nurse practiciner comes in to ask about family history, allergies and recent illnesses and they put in eye drops to dilate her eyes. She then tells us about the side effects of anesthesia and how kids can wake up delerious and in really cranky mood. Sometimes they might be violent or sad. I started crying.I was nervous about the exam and the anesthesia and have watched my poor baby go through so much in her 2 years of life. It seemed unfair to do that to her. But I got over it and the n.p. was very nice. She offered to give Emory valium or versed to make her loopy before going back so that she didn't fight them when they gave the anesthesia. We opted out. I didn't want her to have unnecessary pain meds for an exam and she is a little fighter but I'm sure the happy gas would put her out quickly. I also mentioned her having autism and the nurse then told me that its a good idea that we chose not to give meds since she has seen lots of resistence from Autisic children when taking the versed, which was what they were going to give Em had we said yes. She said that it doesn't make them very comfortable and very irritated so they fight more. Phew! Took a load off my mind that I made the right decision. She also gave Emory a cloth doll in a hospital gown as a lovey during the procedure.

We then went out in the hall and Emory got to sit in a car that should would be "wheeled" into the operating room in. She was screaming for the car when we had walked by them to go to the room where we changed her and talked to the nurse so she was happy as could be with her dolly and the car. We pushed the car into the waiting room and Jason drew a face on Emory's doll while she kept asking me to sit down in the car with her. The anesthesiologist came into to talk to us about what he was going to do to make her sleepy for the procedure and see if we had any questions. We didn't and we then wheeled Emory to the OR doors and said our goodbyes. Emory didn't care that we were leaving, she was happy to be in her car and that somebody was making it drive. Handing her off this way was much better than handing her off to a stranger while she screamed for me which is what I expected. Jason and I then walk down the the post op waiting room and check in. There are families all over and I felt weird being in there since our kid wasn't in surgery, just having a 20 min. exam. After about 45 min the dr. comes in and takes us into a consult room to give us the results.

He told us that they found something. YAY! Emory has Achromatosia which affects the cones in her retina. Her cones have hardly any function from what I understand which is making her extremely light senstive and explains the squinting. The rods in the retina work just fine which is great. They checked for Albinism which she doesn't have. Her dr said now the squinting makes sense and so does her nystagmous. Her motor nystagmous is a result of Achromatopsia. The bad news in all of this is there is no treatment other than what we're doing already. You can't bring the cone function back. Her vision is about 20/300-20/350 and this could get better over time since she's only 2 but only time will tell.The treatment is to make her more comfortable in light by finding sunglasses, we will have to try different shades of lenses to see what works best for her. When she's older we'll need to look into making things large scale. Large print books and lots of magnification. He said that we want to make the Deaf and Blind School aware of her but thankfully our vision specialist is from the deaf and blind school so we're one step ahead and we're already getting vision services.  There are things we'll have to deal with when she's older like no being able to drive which is sad that I'm expecting her to be heartbroken and this is something I wont have to worry about for at least 14 more years. Emory may be completely color blind we wont know until she's old enough to distinguish colors. She might only have a some color blindness but it is a symptom of the condition and color blindness explains why she wont do color sorting activities during Pam's visits.

After the consultation we walked out of the room and receptionist said that she was ready for one of us back there. I was so excited to see my baby. The dr. walked me back and Emory had already woken up. She was whining for mommy and asking for her binky. I had taken it out of her mouth when we said bye at the OR doors. I took her and gave her, her "b" and off to slumber land she went. We were then moved to a different room where Jason was brought back. This was at 1. Emory slept until 245ish. She took a really long time to wake up which suprised me. So I held her and we rocked in the dim room. She had an iv in her arm and we found out that she was apparently poked 5 times. :( 1 on her foot, once in each ankle, the top of her hand and then the palm side of her wrist was the last one and where the iv was. Once she fully woke up she kept saying it hurt and was trying to pull it out!! I felt so bad that I couldn't fix it and make it better. I had to hold her while she screamed and hold her arms down so she wouldn't pull it out before the nurse could take it out. The nurse came back and took it out and took off all the blood pressure cuff and blood oxygen thing. We were then set to go home! WHOO HOO!!!! 

Before going home we went and got something to eat in the cafeteria since none of us had eaten all day long. Emory was back to her normal loud, silly self once we were down there. It was long day and I'm glad we have an answer. We're adding another "a" word to our diagnosis list but this one has some benefits like social security and free visual aids for her.