Monday, January 11, 2010

St. Louis Childrens visit!

Ashton, getting into everything!

Ayden, so relaxed and compliant!

Yesterday was a GREAT day! One that Jeff and I have been looking forward to for a long time! We finally were able to see a Pediatric Ophthalmologist who does a lot of studies on nystagmus, the side of effect of the ocular albinism that Ashton and Ayden both have. Dr. Tychsen (pronounced Tyson), as well as St. Louis Children's Hospital, has come HIGHLY recommended by everyone we talk to. We were referred to him by the leading N doctor in the country right now, Dr. Hertle. We are so thankful we found him and, that through a series of events, we have landed in the same city as Dr. Tychsen, AND we are covered under a great insurance plan that he accepts!
We ventured out to an area near downtown St. Louis yesterday morning with me driving the boys behind Jeff in his car - he had to go to work after the appointment. It was a fairly short drive, and I found several places along the way that I will have to check out soon! We arrived at the hospital with 20 minutes to spare! (That is very exciting and rare for this family!) We found the office very easily and were greeted by a wonderful staff and a full, but very kid friendly, waiting room. The staff were great and the people flowed in and out very smoothly - like a well oiled machine!

When it was our turn we were taken to a room where a doctor quickly arrived. I was surprised to see that a doctor (an optometrist) was the one to do the preliminary tests. He was very patient and spent a lot of time with each boy. Ayden was very quiet and cuddly while we were there. He was also very compliant and smiley for the doctor. Ashton was a little more antsy and just wanted to check it all out. If the doctor turned around to write something down he took that as a sign that he was finished and would try to get off my lap. When the doctor was finished he told us that we would go in another room to get the boys' eyes dilated for Dr. Tychsen. As soon as we walked in the new room we spotted guessed it! Yet another bed to lay down on! Both boys got up there okay and even laid down pretty good (of course, there was a pretty young girl making faces at them over their heads!) Ayden did fine while the dr. looked in his eyes with the light, but when it came time for the drops he started to let that dr. know how he felt about him! Luckily it was just a drop in each eye and it was over. He was fine as soon as he sat up. Ashton seems to be more light sensitive and did NOT like the combination of laying down AND having a bright light in his eye! We had to hold him down while the dr. looked in his eye and put the drops in. Ashton was also fine as soon as we got him off the table/bed. They told us we could walk around or get a drink/snack for about 30 minutes while their eyes dilated.

We walked around the hospital and found some neat things to look at. We also gave the boys a snack before heading back to the office. When we were called back we again saw not an ordinary assistant, but another doctor! He looked at the boys' eyes with bright lights and different lenses. I don't know everything he was looking for, but he was looking to see if they were far or near sighted. Ayden again did excellent for the doctor - we couldn't believe how he just sat there! Ashton, on the other hand, wanted NOTHING to do with this activity! Every dr. tired to use a tv behind their heads as a distraction. Since we don't do tv with the boys, they could care less about that and it was a huge flop! Ashton HATES bright lights and he HATES to be restrained...we had both! It was terrible for me, as a mother, to put him through this! He was sitting on my lap and I had to hold down his hands. The doctor called for an assistant to hold open Ashton's eyes. We did this while Ashton screamed and the doctor flashed a bright light in his eyes! I hated that we had to do this, but at the same time I was glad that they were doing what was necessary to gather all the information they needed to best help us. This doctor then took us into yet another room to finally see Dr. Tychsen! We didn't have to wait long before a man with a bright light around him walked through the door! (Okay, so maybe we were the only one's who could see the light - but, what can I say...we were really anxious to meet him!) Ashton, again, was not real cooperative, but Ayden did great. In order is better look at Ashton's eyes we again went to the room with the bed. Dr. T called for the assistant again and she held his head while I held his arms down and the dr. was able to look at his eyes.

SO, for the exciting news! Our thoughts were confirmed about the null point/head turns that the boys have. Our last PO did not see this, even when I specifically asked him about it. We were told that the boys still do not need glasses! They are a little bit more farsighted than what is normal for their age, but it is not enough to need correction. He did tell us that about 50% off all kids with ocular albinism do end up with glasses. We are scheduled for some very advanced testing the end of February. One of the tests is an eye movement recording. There are very few PO who do this testing, so we are very fortunate to have one locally who has this technology. This testing will tell us more about the extent of their N and how it can be improved. Yup, that's right, I did say that they can improve it! Dr. T will be performing surgery on the boys' eyes sometime before they begin Pre-K. This surgery will move their null points to the center of their eyes so that they will not have a head tilt and will see the best out of the center of their eyes. Currently Ayden can see best out of the top of his eyes. This means when he wants to really see/focus on something he puts his chin to his chest and looks out the top of his eyes. Think of a granny looking over the top of her bifocals! :) Dr. T is more worried about Ayden's head turn because of the potential growth problems it could cause. Ashton can see best out the right side of his eyes so he turns his head to the left and his eyes go to the far right. After the surgery their null points will be moved to the center of their eyes, therefore they will not have to move their heads. Also, the surgery will dampen, or lessen, their N. This is what makes their eyes move side to side, or "jiggle". The surgery was not something that our previous PO was very willing to do. After discussing my research with him he said he would be willing to do it if that is what I wanted. It was obvious that he did not believe it would make a difference. He also did not have the technology to do the surgery with the accuracy that Dr. T can.
We feel so blessed to have found such a great hospital, team and Pediatric Ophthalmologist! We are so optimistic about the future of our precious baby boys and our new relationship with Dr. Tychsen! We will be updating when we find something out from the tests in February!


  1. That is so awesome! So excited for your little guys.

  2. thanks for the update! those boys sure are lucky to have a mommy like you. my mom and i always talk about how you are a supermom!