Wednesday, February 24, 2010

first hair cut and a post I don't want to write

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.....






ok
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.
Surgery!?
REALLY!??!
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.


13 comments:

Anonymous said...

hi

Anonymous said...

Hi Catherine
First I LOVE your blog and have followed you and Max ever since my little guy Cody ( DS 10mts ) was born..second the new haircut is cute not bad and the great thing is hair grows back:)..third I know all about eye issues Cody was born with bi-lateral cataracts and had eye surgery twice already both times sucessful :) and will go under again st patricks day (we are Irish so good day for us :) ) for the same thing that you might be doing with Max. Just wanted you to know you are not alone in this and I hate it too but I want his sight to be the best it can be. Cody is also starting vt this week it was a bit of a fight to get it but his mama won :)anyway if you would like to compare notes or say Hi suefinnb@yahoo.com we are in NY.

CP said...

Max looks so cute with his new hairstyle and don't worry it will grow out really quickly :-)

Sending you all huge hugs
Axx

cora said...

Catherine, just go through the steps. One day at a time. One step at a time. You will know what needs to be done. It will reveal itself...or better still, Max will somehow let you know. hang in there. Sending you, Max and Jerry good vibes...
-f

Kelly said...

Catherine, inhale.....exhale.....you and Max are going to be just fine:) You are a great mommy and when the time comes, you will just know what to do. Research and second and third opinions is a great start. BTW, Max is so stinkin' cute......regardless of what his hair looks like. That smile.....sigh:)

Kristy said...

Catherine, just a little note to say that I am thinking of you and sending you lots and lots of good thoughts!!

Brienne Michelle said...

Hi Catherine!
Right out of college I worked with some eye surgeons for about a year, and one of the doctors actually had a daughter with the same condition Max has. She wears the cutest glasses, so they went that route rather than surgery. He said they had seen a lot of improvement with the glasses, and that surgery didn't end up being necessary. You and Jerry are some of the most amazing parents I have ever met, and I am sure you will come to a decision that feels right for all of you. Thinking of you all, and sending heaps and heaps of love!! <3 Brienne

Sharon said...

My kids have had more bad haircuts than I can count. Luckily, the hair always grows back!

And good for you for following your instincts about Max's eyes. Surgery sucks. Handing over your baby is hard. But sometimes it has to be done. Brennan has a blocked tear duct that was supposed to be repaired a year ago and I keep putting it off. So, I totally understand how you're feeling. Take your time. It doesn't sound like there's a rush and starting with the therapies is a great start. Hang in there, my friend. This parenting stuff is certainly not easy! Thinking of you and eating a few extra cookies on your behalf.

Megs said...

Hey there Catherine,

No one can tell you what to do, it's such a difficult decision. I just wanted you to know that I can relate to what you're feeling because Owen has to go under general anesthesia for his joint injections for juvenile arthritis. The whole time - leading up to his procedure, during it, and afterward - I was torn between feeling like I was going to throw up and being so grateful that medical science gives him this option to relieve his pain. As a momma, you have reserves of strength you never knew existed.

Thinking of you and Max,
Megan

Sweet Pea's Mommy said...

Max is so adorable with a great haircut or a bad one! His hair will grow back and be thankful he has hair! :-) My little girl is still virtually bald.

We live in So Cal too and my daughter has the same issue and wears glasses. I'd love to let you know what I've learned and what we are being told by various doctors. We just met with a VT last week for the first time, but have been seeing a pediatric opthamologist since she was just over 3 mths old.

Keep hanging in there. You are doing great and I'm glad you were following your gut!

Ellen said...

Hey, Catherine. It is so nice to meet you and your Max (awesome choice of a name)!

Happy birthday little yummy Max.I wanted to reach through the screen and pinch his cheeks.

Listen, when Max was little we got visual therapy for him through The Commission for the Blind (scary name, I know). Max had vision issues because of the stroke he had a birth. They were awesome. You might want to see if you can find a branch in your area. It was all free.

You've inspired me to do a post about trusting your instincts. It's so hard to do when you're the mom of a kid with special needs, but we SO know.

Jill said...

Hi Catherine,
It's Jill from Unravelling. . . just reading the blog roll list and found yours!

I have (had, depending on how you look at it - I've been told it never goes away) strabismus. I've had two surgeries, the first when I was three, the second when I was six. I think I started wearing corrective lenses when I was 4 or so and also wore a patch on my non-affected eye (to help strengthen the weaker eye) for a few years between 3 and 6. I'm 34 now, and for the most part my eyes track together, except when I'm really tired. I can tell sometimes when I watch TV that I'm turning my head and looking straight at it. After years of my parents telling me to look straight, I now can catch myself!

I share this as someone who can remember being really young and in the hospital, going to eye appointments all the time, my parents working with me on the side so I could "read" the eye charts (my doctor didn't have picture charts) before I could read, wearing glasses and wearing the patch. It did make me feel different, and I do remember only a bit of pain associated with the second surgery. My parents also sought a 2nd opinion because they didn't trust the first. And in the end, the 2nd was probably the best course of action for me.

I've seen different eye doctors since and they immediately know I have strabismus, but they all say my eyes "work" together as best they can and "look" straight to an average person. So they consider it a success! I guess I do as well. I'll never have good depth perception and my brain will always read two images rather than one (and cancel out the weaker), but my vision is decent, and that's what counts! I still like wearing glasses, and need them a bit for distance, so I wear them and consider them an accessory.

You know your son the best and will know what he needs. Snaps to you for doing what feels right for him. He's a cutie!

carol said...

Hi, There is an amazing eye doctor in San Diego, Dr. Granet at UCSD. You can email me if you want more information.
greensteinfamily@hotmail.com
( I am the mom of Hannah in your unraveling class) I really like your blog I am going to bookmark it!!!!!