on Friday I took Max back to Amy's Playground where he had his birthday party. They have a gal there who does haircuts for kids. His hair is just a touch over his eyes now and I thought I'd like a trim just above his eyebrows because I think it looks good a little long.....the gal I told this to had different ideas.....
Here he is just before getting it cut. So cute.
here is how he felt just after he had the hair cut. Upset because the gal didn't listen!
Here he is looking super cute after the hair cut - however the look only lasted 2.5 seconds and now it just looks terrible. His hair grows straight down and looks like crooked bangs that are too short and just makes him look....heavy sigh....I can't even say how I feel about this hair cut. I HATE IT. so there. HATE IT. AUGH!
I am now on the lookout for baby hair gel - seriously - so that it stays over to the side like in this photo because if it isn't like that - it's HORRIBLE.....
on a more seriously note
We took Max to the Eye Doctor last week and found out that he has Strabismus. Which basically means that his eyes are not lining up properly and they cross. Both eyes alternate so it's either the left one or the right one. rarely both although with Down syndrome it often looks that way.
The Dr. wants to do surgery within the next 4-6 weeks to cut the muscles of both eyes and re-align them.
I can hardly breathe when I type that out.
I am not breathing right now.
I cannot deal with this.
ARE YOU SURE??????
So - we went to another dr yesterday who is not into doing surgery unless it is very severe. This one says visual therapy is the way to go. Glasses with special lenses and therapy in the form of play with his PT, OT and who ever else does any sort of therapy with Max regularly. He would work with all of them to incorporate special therapy into the mix to help him work on how he uses his eyes.
his feeling is that just changing the alignment of the eyes isn't going to change the way the brain thinks about how to use the eyes. You have to train the brain or re-train it.
He says success rate is about 50%
The surgeon says surgery is 80% success rate and that some need more than one surgery. um oh god. not breathing again.
We are making an appointment with another dr.
and we are leaning toward doing BOTH the visual therapy - starting with glasses AND then doing the surgery so Max has a little time to get used to using his eyes differently even before they do the surgery.
oh god this just makes me sick.
The whole thing makes me sick.
Jerry and I have been telling our Pediatrician for MONTHS that we think Max's eyes cross. So the pediatrician pulls out a small flashlight and points them into Max's eyes. and then draws two eyes on a piece of paper and shows us that the light is hitting both eyes at the same point which means he is not cross eyed. he sent us to an eye dr. that said that kids with Down syndrome look cross eyed and basically made me feel bad for coming in more than once to re-check. This was all getting on my nerves because my gut was telling me otherwise. So that is when we decided to pay out of pocket for someone out of our insurance network to get another opinion. Then we hear SURGERY. and not only THAT but that this should have been taken care of 6 months ago.
I'm talking with everyone about this and I hear so MANY stories about surgery that corrected the problem and that everything was ok and it all worked out. I'm hearing about different doctors that people have gone to and who people really liked.
This all helps - but at the end of the day
I have to hand over my baby to someone so that he can be "put under" for surgery. No matter how much research I do - nothing can make me feel ok/good/better with this.
We will keep you all posted on what we decide to do - and how things are going.
All I know for sure is that Max is the most amazing human I have ever met and I want to do everything I can to give him all possibilities for the best life ever. Even if I am uncomfortable and feel like I might die just typing this all out here now.
It's terrible this surgery thing.
I'm off to eat another cookie - that's what I've been doing ever since I heard the news. Eating cookies and not breathing.