Eye Appt

So today we had our appointment at TX Children's with the opthalmologist.  I guess I had different expectations of the outcome.  I was caught off guard, so I was pretty upset when I left.  For some reason I had it in my head that we really didn't need to go, that we were just going as a precaution.  And that the dr would tell us that her ptosis is so minor that there is nothing we needed to do, and it would correct itself, and that you would never know she was born with a droopy eyelid.  So when none of that happened I felt like I was punched in the gut.  It wasn't a BAD appt - just not a very good one. The short story is that we know nothing have to watch her very closely.  And start patching again.

They dilated her eye so she was a little uncomfortable b/c it was bright.  Other than that, dr said her vision currently looks good.  He asked all kinds of questions and I didn't know the answer to many of them.  I did show him pictures of Alysse so he could see her progress from her birth until now.  I showed him her best days and her worse days.  He did agree that it appears to be getting better.  But that didn't mean it would continue to get better, or that everything was ok. 

His main concern was her vision.  He emphasized how critical this time is right now while her vision is developing.  If her lid covers the pupil too much, it could affect her vision.  She could develop a lazy eye (where the eye wanders) or barely have vision in it at all.  He also mentioned something about a brain hemmorage but I lost concentration by that point and didn't really want to hear all the what ifs.  He said many children have to have surgery to correct it but that they didn't recommend until school age b/c it's more accurate and effective then.  He hinted that we might have to do surgery on her much sooner than that, and that he would refer us to a plastic surgeon when the time comes.  For now we have to monitor her closely and bring her in every 2 months for vision checks.  This is when I could feel the tears start building in my chest. 

He told me to patch her good eye every other day for 1/2 hour to 1 hour at a time.  While the patch is on, I need to stimulate the little eye with a toy or something for her to focus on.  His main concern is that she will give up using the little eye and only use the good eye.  So we need to strengthen the muscle in the little eye.  But patching is "tricky" and we have to be careful not to over patch b/c it could affect the vision in her good eye.  Geez, no pressure there.

I told him how I hold her on her side so that her good eye is covered up, that way she is forced to use her "little" eye to see me, hoping it would strengthen that muscle. He thought I was the smartest person in the world. Isn't that what any mom would do??

I asked what he thought her eye would do and he said there is no way to tell.  That the muscle is weak in her eye and with any muscle, it gets weaker over time.  So hers could get better or it could get worse.  There's just no way of knowing.  He didn't give me much hope.  He told me all the things to be on the lookout for... if it gets worse, if it stops lifting at all, changes in her pupils... etc, to call them immediately and not wait until our next appt.  He also stressed for us not to skip or next appt b/c it was very important to get her back in there in 2 months.  It kinda scared me.  What if I mess up or don't do something right?  What if she doesn't get better?  What if, what if, what if?  My biggest fear is that we do all this and it doesn't help.  Then what, surgery?  I did read that ptosis usually does not get better on its own.  I need to go ahead and prepare myself for that possibility. 

I am so worried about the surgery b/c I have heard mixed things (based on what I read off google).  Her eyelid might get worse, or her eye lid might not close all the way... she might lose the ability to blink, her eye would never look normal, ever.  If it's done too early she could end up with multiple surgeries over time.  If it's done too late, her vision could be permanently damaged.  Either way lifting her eyelid would help her see better overall so I guess it would be worth the surgery.  It's just a matter of WHEN to do it.

At this point all I can do is patch her like he told me to and put it in God's hands.  God is in control and will take care of sweet Alysse.  He will also give me the strength to be there for her, take her to all the necessary appts, do the patches and make the right decision on surgery.  And most of all... He will help me stop worrying (I think that's the hardest part).  We are so fortunate to live in Houston where they have some of the best dr's in the country.  I'll do what I have to do to make sure Alysse gets the best dr before ANYONE cuts on her eye!

Her diagnosis (for now I guess): congenital ptosis

 

 

 

 

 

I love this baby.