I really really try NOT to get frustrated over Aly's health. I can't do anything about it, I can't change it and I'm not in control of it, so why get upset over it, right? Well, I'll tell you why...because she can't catch a break. Since she has Mitochondrial Disease there are certain things she needs checked out on a yearly basis. One of those things is her vision. We've been to alot of doctors and several of them have asked me if I had any vision concerns. My answer has always been "no" because that's an area that I thought was fine. Then again I also didn't have hearing concerns and that didn't turn out great either. I should know by now to not be hopeful when it comes to new medical issues. So, I took her to the Ophthalmologist yesterday for what I thought was to be just a routine visit b/c the eyes can be affected with Mito. By the way, in a momentary lapse of judgement I decided to take Cade with me. About 30 mins into the appt I regretted that decision. The appt started out good (or so I thought), she was naming the pictures on the tv screen pretty well. Once they moved to her left eye she started to get bored with the tv game. She started making things up instead of naming the correct picture. When they uncovered the other eye so she could see with both again, she was getting the pictures correct again. I thought she was just playing games with us but the nurse said for some reason she's not seeing out of her left eye. Again, I thought it couldn't be too bad, after all, she's never acted like she couldn't see so this was an "easy" appt. They dilated her eyes (Aly says her eyes are "peeling out") and we jumped through all kinds of hoops getting Aly to look through machines. She did very well with that once they told her there were pictures of Dora and Diego in the "glasses". Those pediatric Opthal's know what they are doing! The doctor was naming off different numbers and haziness levels, I said "We're leaving here with glasses aren't we?". Because in my mind that was the worst that could happen, not b/c glasses are the worst thing but b/c I didn't even comprehend that it could be anything worse. She's only 3 years old and she never acted like she couldn't see, so it can't be THAT bad. The nurse then took both kids out of the room (to get stickers and suckers) and to allow me to actually hear what the doctor was saying. She then said Aly has cataracts, her right eye was mild but her left eye was severe and she can barely see out of it. The doctor can barely see in her eye so Aly can barely see out. I about fell out of the chair. How could my 3 year old have cataracts?! Well, come to find out it's one of the many things that can happen with Mito. Since this was her first eye exam there's no way to tell if she's had it since birth or if it developed later and there's no way to tell how quickly it worsened. They can follow the right eye since it's not as bad and doesn't need to be fixed yet but the left eye needs to be fixed right away. If it developed after birth and she had time to develop her sight then the end result will be better than if it was present at birth and she wasn't able to develop sight in that eye. They won't know until after it is removed. She will have to wear glasses for the rest of her life no matter what. Since the majority of people that have cataracts are elderly and already have glasses for other reasons it's not something they really think about. I know having glasses at age 3 and having to wear them forever isn't the worst thing that could happen but it's just ANOTHER thing that's happened. Even if her vision is the best they can hope for after the surgery she still has to wear them. They are afraid her right eye is compensating so much for the left that her brain is shutting off her left eye totally. You know the saying "use it or lose it"? That applies here. So she'll have to wear an eye patch on her right eye for awhile to strengthen her bad eye.
So, as I say I'm trying not to be frustrated, I really am frustrated. I would really like even just one month without a major medical issue coming up. Then I have a 5 year old that is acting out so bad that I'm about ready to commit him to his room until he's 18. I feel for him b/c he didn't ask for any of this either. He just wants to play with his sister and have a normal kid life too. Instead we're always at doctors/hospitals, he's being shifted from grandparents and friends while Scotty is at work b/c I have to be with Aly. I feel bad for him but don't know how to fix it. I'm having trouble dividing my energy between the two. Which leaves no energy for anything else for sure.
This is a season and it too will pass. My baby boy will be grown and I'll miss the little boy that craved my attention.
