You gotta wear shades!!
Yup, Mina has her first pair of sunglasses. Could she be ANY CUTER?!?!
We spent several hours at Primary Children's this morning. We owe a huge thank you to Keith for taking care of the boys all day!! They got ice cream, at the mall and played on the Dinosaur bones and he made them lunch and had them down for naps when we got home. Um, can I keep him?!?!
Here's the summary of the appointment:
*Love Dr. Hoffman, very knowledgeable and clear about everything
*Confirmed diagnosis of Aniridia
*Very good prognosis for maintaining good vision due to her healthy retinas, lenses, optic nerves, eye pressure...
*Very good sign that she has not developed Nystagmus (shaky eyes) by this point. It usually sets in by age 2 months.
*Essential to have her eyes checked every 2 to 3 months (wow) to check for glaucoma or cataracts which are very common with Aniridia.
*Essential to have kidney screenings for the Wilmes tumor every 3 to 6 months at the longest through age 5.
*In the event that she develops the tumor we would be referred to oncology for treatment which could include surgery, medication and/or a form of chemotherapy.
*20% of those with Aniridia develop kidney tumor(s).
*Essential to have "real" genetic testing and gene mapping done for her and not to rely on the free research based testing for which we have already signed up.
*Will be setting up an appt. with Prim Chdrns genetic counselling on Monday after a referral is in place, apparently they are hard to get into, super.
*Sunglasses ARE a good idea for her starting NOW.
*Any kinds of surgical reparations of the irides (plural for iris) are not even on the radar until she is an adult.
*There are contact lenses available that have an iris on them to make her eyes look normal... good to know for when she gets older!!!
*There is a partner of Dr. Hoffman's who comes to Orem twice a month who we can see instead of going to SLC every few months. Dr. Hoffman said "he is fabulous or he would not be working with me." We are scheduled with him, Dr. Larsen, on Oct. 12th for her next appointment.
*I'm tired.
So that's it in a nutshell, for now. We are sooooooooooooo blessed to have the priesthood in our home. Mina received a wonderful blessing a while ago promising that her little body will be strong and able to tolerate any tests and procedures that she will have to undergo AND that in a timely manner her body will be healthy and she will have full use of all her faculties. So we just have to learn all we can and follow sound medical advice so we don't drop the ball on our end! Sounds easy! :)
Thanks for all your prayers for our little Mina, she sure is an angel in our home!!!
